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Understanding "El autismo" ; A qualitative study of the parental interpretation of autism: A Hispanic perspective

Dissertation

Presented in Partial Fulfillment of the Requirements for

the Degree of Doctor of Philosophy in the Graduate

School of The Ohio State University

By Claudia Lucia Moreno, B.A., M.S.W.

******

The Ohio State University

1995

Dissertation Committee: Approved by James E. Lantz Virginia Richardson Henry Leland Adviser Allege of Social Work OMI Number: 9544647

This microform edition is protected against unauthorized copying under Title 17, United States Code.

UMI 300 North Zeeb Road Ann Arbor, MI 48103 Copyright by Claudia L. Moreno 1995 To my mother and father: Imelda and Jorge

To Joe D. who made it meaningftil "the wind beneath my wings".

To the ten parents of children with autism: their voices will always be here!

11 ACKNOWLEDGEMENTS My deepest appreciation to my committee members who took me through

the path and always stood by me. Dr. Lantz, my advisor who always gave me

his time and was extremely supportive from the beginning. His knowledge,

experience and understanding made it possible. To Dr. Leland whose brilliant

mind always shared with me and took me through roads never traveled before.

To Dr. Richardson who made distance only a keyboard away and gave me good

insights and inspiration. To all my professors who from grammar school until

now cultivated in me the gift of education and the yearning for knowledge. To the parents who participated in this research, when I sat to listen to their stories,

I traveled and dreamed with them. I admire the way these parents rebuilt their life out of broken wings. They gave their own commitment to mend those wings to fly and always found hope. Thank you for taking the resolution to confess your journey with autism.

My thanks go to the Council of Social Work Education (CSWE) National

Institute of Mental Helath (NIMH) and to the College of Social Work at The

Ohio State University for their financial support to complete this project.

iii Thanks to Dr. Sophie Pierog for her initial assistance and for proving me

the entrance to the Hospital. Thanks to all the staff who work there and who

dedicate their time to the care of handicapped children and their families. Thank

you for your help and for making me feel at home.

I am grateful to all those who offered their assistance one way or the other

in this project. To Linda Grabner for her wonderful translations and insights.

To Oscar Cuyubamba for his translations. To Sharyn Talbert for the edition of this manuscript. To Stephanie Bruzuzy for her initial revisions. To my peer debriefer, dear friend and mentor; Donna Catlaw. To Ana Soto for her feedback about Hispanic families. To Dario and Costi who stood with me with good

"arepas y chocolate" and their unconditional friendship. To the aerobic classes that helped me to reduce stress. To Joe D. goes my love and appreciation for being there when I needed him and never made me travel this road alone; your legacy will always live! Thanks go to my parents whose love and support have always been unlimited. To my brothers and sisters who believed in me. Thanks to so many friends and "amigos" whose names remain in my heart. And overall, thanks be to God for everything.

Gracias!

iv VITA

January 28, 1962 ...... Bom, Paz del Rio, Boyaca - Colombia

1982 ...... Intern (WX-TV Channel 41), Secaucus, New Jersey.

1983-1984 ...... Research Assistant, Hispanic Research Center, Fordham University, Bronx, New York.

1984-1987 ...... Intake Coordinator, Rose Gross Children's Center, Jewish Home & Rehabilitation Center of NJ, Jersey City, New Jersey.

1985 ...... B.A., Montclair State College, Upper Montclair, New Jersey.

1987-1989 ...... Clinical Coordinator, Rose Gross Children's Center, Jewish Home and Rehabilitation Home of NJ, Jersey City, New Jersey.

1989 ...... M .S.W ., Rutgers, The State University of New Jersey, New Bmnswick, New Jersey.

1990-1991 ...... Patient Management Coordinator, Children's Center for Special Needs, Jersey City, Jersey City, New Jersey. 1991...... Consultant (Psychotherapist), Mount Carmel Guild, Community Mental Health Center, Jersey City, New Jersey.

1993-1994 ...... Graduate Teaching Assistant, The Ohio State University, College of Social Work, Columbus, Ohio.

1994 ...... Research Assistant, The Ohio State University, Hispanic Oversight Committee, Office of Academic Affairs, Columbus, Ohio.

1994- Present...... Grant Reviewer, Administration for Children, Youth and Families (ACYF), U.S. Department of Health and Human Services, Washington, D C.

1995-Presen t ...... Instructor, Columbia University, School of Social Work, New York.

FIELD OF STUDY

Major: Social Work Advisor: James E. Lantz Concentration: Developmental Disabilities

VI LIST OF TABLES

TABLE PAGE

1. Main Themes 64

2. Demographic characteristics of the parents 68

3. Demographic characteristics of the children 68

Vll TABLE OF CONTENTS

DEDICATION...... ii

ACKNOWLEDGEMENTS...... iii

VITA ...... V

LIST OF TABLES...... vii

CHAPTER I: Page STATEMENT OF THE PROBLEM

Introduction ...... 1 Statement of the P roblem ...... 2 Significance of the Problem ...... 4 Purpose of the S tu d y ...... 5 Implications of this Study for Social W o r k ...... 5

CHAPTER H; REVIEW OF THE LITERATURE

Introduction ...... 8 Emergence of Autism as a L abel ...... 8 Autism Prior to K aim er ...... 9 Philosophical Influences of Kanner's W ork ...... 10 Theories of Causation ...... 11 The Nurture Polemic ...... 11 The Nature Polemic ...... 15 Autism as a Diagnostic Category ...... 17

v iii Kanner's Initial Description: Autism or Schizophrenia?...... 17 Diagnostic Classification of Autism ...... 19 Is autism a Pervasive Developmental Disorder?...... 23 The impact on Parents of children with Autism . . . 24 Is the Impact of Autism on the Parents the Same than any other Disability? ...... 27 Autism in other Cultures ...... 29 Hispanics and autism...... 35

CHAPTER III: METHODOLOGY

Introduction ...... 37 Rationale for Naturalistic Approach to Inquiry . . . 37 Implications for Social Work Practice...... 38 Design: Emergent Design ...... 39 F o c u s ...... 40 Gaining E n try ...... 41 The Setting of Study ...... 42 Sample and Population...... 43 Recruitment of Participants...... 44 Pilot Study ...... 45 Data Collection...... 46 Participant Observation ...... 46 Recordings...... 47 Interviews ...... 48 Data Analysis ...... 50 Data Collection...... 51 Content Analysis ...... 52 Inductive and Deductive Analysis ...... 52 Data Interpretation and Report Writing.... 53

IX Trustworthiness...... 54 Credibility ...... 56 Transferability ...... 60 Dependability ...... 61 Confirmability ...... 61 Protection of Participants...... 62

CHAPTER IV: "WHY ME"

Introduction...... 65 Brief Description of Families and Children...... 67 "He Used to Play by Himself" ...... 70 "Why is God Punishing U s " ...... 73 "That Was Horrible" ...... 75 "It is a Cerebral Deficiency" ...... 81 "It is Difficult to Accept"...... 83 Summary ...... 87

CHAPTER V: "HOW AUTISM HAS CHANGED OUR LIVES"

Introduction...... 90 "My Life Changed Completely"...... 91 "It Dysfunctions The Fam ily" ...... 96 "It Has Affected Our Marital Relationship"...... 100 "It is a 24 Hour-a-Day Jo b " ...... 108 "She [mother] Has No Independence"...... 112 "His Siblings" ...... 126 "We Can't Go on Vacation"...... 132 "Parenting a Child With Autism"...... 138 Summary ...... 144 CHAPTER VI; "THEY ARE CHILDREN TOO"

Introduction ...... 152 "He Has Progressed"...... 153 "They Like to P lay" ...... 159 "He is Intelligent"...... 164 "He Began to Masturbate Him self" ...... 168 Summary ...... 173

CHAPTER VII: "AFTER WE ARE GONE"

Introduction...... 177 "It is F o re v e r" ...... 178 "The Future is Scary" ...... 180 "An Institution is Not The Same"...... 183 Hope and Meaning...... 190 Summary ...... 194

CHAPTER VIII: "WE RECOMMEND"

Introduction...... 197 "We N eed"...... 198 "What Helps"...... 209 Summary ...... 214

CHAPTER IX: DISCUSSION

Introduction...... 218 Discussion of The Themes...... 220 Reflections on Methodology ...... 235 Implications and Recommendations for Social Work Practice ...... 236 xi Implications for R esearch...... 239 Limitations of The Study ...... 239

POEM...... 241

APPENDICES

A. Solicitation Letter to Parents from Agency ...... 243 B. Interview Guide ...... 244 C. Consent Form (English Version)...... 245 D. Consent Form (Spanish Version)...... 246 E. S u rv ey ...... 247

REFERENCES...... 251

XU CHAPTER I

"The image often invoked to describe autism is that of a beautiful child imprisoned in a glass shell. For decades, many parents have clung to this view, hoping that one day

a means might be found to break the invisible " barrier. (Frith, 1993) INTRODUCTION

Autism is a childhood disorder that affects approximately fifteen out of every 10,000 children (Wright, Holmes, Cuccaro, Abramson & Smith, 1993).

It has been characterized as a "severe deficit and pervasive impairment in multiple areas of development" that affects mainly "social interaction, impairment in communication and the presence of stereotyped behavior, interes and activities. The qualitative impairments that define these conditions are distinctly relative to the individual's developmental level or mental age"

(American Psychiatric Association, 1994, p. 65). As a result, autism presents a mystic and peculiar set of behaviors that are different from other developmental disorders.

Autism has also been studied by other cultures (Kuo-Tai, 1987; hotter,

1978; Ohta, Nagai, Hara & Sasaki, 1987; Sanua, 1984; Steffenburg & Gillberg,

1986). However, most non-Westem studies have used Western criteria to

diagnose autism (Connors, 1993). The impact of autism on parents has also

been studied, but very few address parental perceptions of autism. In addition

few studies to date have examined the cultural perceptions of the disorder.

Literature about the perception of autism in the Hispanic community is even

scarcer.

Statement of the Problem

Autism is currently one of the most widely researched childhood disorders. With the first description of autism set forth by Kaimer in 1943, parents were blamed for causing the disorder. However, during the 1960's the attention was directed to seeking biological causes for autism. Currently, researchers are studying the etiology of the disorder (Bemporad, Ratey, and

O'Driscoll, 1987; Cialdella & Mamelle, 1989; Green et al., 1984; Goodman,

1989).

Although some research has focused on the reaction of parents to the disability as well as parental adjustment to autism, very little scholarship has been concerned with patentai perception of autism has occurred. Most of the

studies that deal with parental reactions or adjustment to autism focus on

theories such as psychoanalytic theory, attachment theory, theory of mind, and

grieving theory. Historically, psychoanalytic theories have focused on parents

being the cause of some emotional disorders which affect their children.

Attachment theories have focused on the parental relationship with and towards

the child with autism, and grieving theories have focused on the mourning stages

of having a handicapped child. From a cultural perspective, inductive

studies about parental perceptions of autism are very limited. Only one study has

addressed the cultural perception of autism, "Navajo perceptions of autism and

social competence: A cultural perspective" (Coimors, 1993). Scarcer still is the

literature on the parental perception of autism among Hispanics (Sanua, 1984).

Parents who have children with autism experience a drastic change in

their personal and family life that affects the entire family system. Weiss (1991)

suggests that parents of children with Pervasive Developmental Disorders have measurably more stress than parents of normal children because they have to deal with a child's impaired social relationships, erratic responses to the environment, language deficit disorder, and bizarre behavior. It has been documented that the number of stressors that families of children with handicaps suffer as a result of their child's condition (Frey, Greenberg, & Fewell, 1989;

Orr, Cameron, Dobson, & Day, 1993) can cause personal strains and family

dysfunction (Willner-Selma, 1986), reduced autonomy, and social isolation

(Boushel, 1994). Parents need specialized help within their social environment

in order to deal effectively with a child with autism. Culture is a part of the

social environment that shapes the family's perception and attitude toward

disability. Individuals deal with the concept of disability based on their personal,

cultural, and societal worldview. Understanding the cultural interpretation of

disability is essential for helping with parents of different backgrounds. Often,

cultural perceptions of disability are misunderstood; as a result, treatment

and intervention can be ineffective.

Significance of the Problem

Autism is a childhood disorder that occurs at a rate of 15 to 20 per every

10,000 children (Wright, Holmes, Cuccaro, Abramson & Smith, 1993)

Hispanics, who are one of the largest minorities in this country, are affected in

the same proportion. Parental perception of autism needs to be understood within an eco-cultural frame of reference because it is the essence of a therapeutic relationship, and effective intervention for the family. This is especially true in light of the fact that Hispanics underutilize mental health an supportive services. One argument for such underutilization has been that these

services are not culturally sensitive (Lopez, 1981).

Purpose of the Study

The purpose of this study was to explore, describe, and discover the

experiences of Hispanic parents who have children with autism. Their

experiences as parents and their perceptions of disability were explored in order

to provide the first step in implementing services more sensitive to their beliefs.

This study also explored how disability influences their lives and how culture

shapes their perceptions of disability. For this study, ten Hispanic families with children with autism were interviewed using the naturalistic paradigm of inquiry.

Implications for Social Work

This study will contribute to social work clinical practice with Hispanic families who have disabled children, specifically, children with autism. It will contribute to the knowledge base, clinical practice, and research in social work about the construct of disability from a cultural perspective.

The essence of social work is to assist in helping individuals within their social environment (Casimir & Jones, 1993). It is expected that this study will contribute to the understanding of Hispanic parents who have disabled children and their cultural interpretations of the disability. Families who have children with disabilities experience a set of chronic and acute stressors (Slater &

Wilder, 1986). These stressors include the belief that they were the cause of the

disabling condition, the physical and time demands that raising this type of child

usually involves, the drastic changes in the family system such as limited

mobility, changes in the daily family life, the social stigma related to the bizarre

behavior, the mannerisms that these children present, and the emotional pain of

having a disabled child.

The role of the social worker is to work within the social, cultural, and

emotional world of their clients and to enable families to gain control over the

life forces affecting them. Social workers can assist families to deal effectively

at the personal, interpersonal, and social levels. These enabling mechanisms

need to take place within a socio-cultural context. Understanding clients from a

cultural point of view is important for the therapeutic relationship (Casimir &

Jones, 1993; Halpem, 1993; Sue and Zane, 1987 and Wallen, 1992).

The integration of the socio-cultural perspective is congruent with the social work profession because it takes into account the principal aim of looking at the client as unique within their environment. This also brings awareness to the client/social worker's understanding of the interrelationship of culture, gender, class, religious differences, and world-view. The recognition of these differences provides the necessary tools for an effective and appropriate

intervention (Marin, 1993). For instance, the meaning of disability is viewed

differently in every culture, it is also influenced by the way societies place

stigmas on handicapped children. This makes parents more emotionally

vulnerable to the reality of having a handicapped child. Social workers need to

be aware of cultural issues such as family support groups, financial resources,

the presence of non-discriminatory and non-stigmatizing community resources,

and issues such as immigration and the availability of community services

(Lequerica, 1993).

The goal of the study is to contribute to the knowledge base of social work by bringing understanding to the meaning of autism from a Hispanic perspective. With this in mind, the integration of cultural factors and the meaning of disability can lead to more sensitive practice, better programming and more appropriate policy design and implementation. CHAPTER II

REVIEW OF THE LITERATURE

INTRODUCTION

This chapter presents a literature review of autism and how it relates to

parents. The purpose of the review is to contextualize to the research inquiry.

The main theme of this study is to understand the construct of autism for a group

of Hispanic parents. In order to frame this exploration, it is important to

understand what is known about autism. This literature review offers a brief

historical explanation of the emergence of autism in the literature, diagnostic

classification, theories of causation, parental impact, autism in other cultures, and autism in the Hispanic culture.

Emergence of Autism as a Label

Autism has been one of the most widely studied childhood disorders in the last decades (Schreibman, Charlop & Milstein, 1993). Autism existed before

8 it was recognized by Leo Kanner (1943) and Hans Asperger (1944). However,

autism only began to be recognized as a separate classification entity (Frith,

1993; Schreibman, 1988) when Kanner (1943) described the behavior of eleven

children in the 1940's.

Autism pm i la Kanner

The classification of childhood psychopathology has been the target of

controversy and ambivalence. In 1896, Kraepelin (Kraepelin, 1902) provided

the first classification of schizophrenia calling it "dementia praecox." It was

assumed that the same classification could be applied to children (Kanner, 1971;

Sanua, 1983). However, it was not until 1930 that the concept of infantile

schizophrenia was utilized (Sanua, 1983).

There are speculations about the presence of autism in the literature prior

to Leo Kanner's original description of the disorder. For example, Itard (1801) wrote about the "Wild Boy of Aveyron", a feral youngster who presented some characteristics of autism: "Itard described him as a filthy, affected with spasmodic movements, body rocking, and resistive to contact with others. He showed no affection and did not seem to attend to his environment. He failed to focus on objects or people. He would sometimes appear to be deaf yet respond readily to certain sounds such as those associated with food (e.g., the cracking o f a walnut), he did not play with toys. When he desired something, he would lead someone by the hand to the location o f the desired object. 10

He showed compulsive demands for sameness in his environment and resisted any change in the location of objects in his room" (in Schreibman, 1988p. 12). Itard's (1801) description of the "Wild Boy of Aveyron" is similar to the

children's behaviors related by Kanner (Schreibman, 1988) in his study.

Kanner's work also lead to the recognition of other cases prior to his original

description of the disorder (Darr & Worden, 1951; Haslam, 1809; Vaillant,

1962).

Schopler (1994), however, argues that autism has been described in the

mythology and legends of certain cultures. Some historical information reveal

that "wild and strange" feral children have existed in the history of different countries. Schopler (1994) describes the story of two feral girls discovered in

India in 1929 who were believed to be ghosts; a reverend transferred them to a parish and kept a diary of their lives. The diary was then translated into English and studied by Gessell (1941) at Yale University who assessed the girls' development and found deficits in their language and social behavior. In 1959,

Bettelheim used the examples from Gessell and mentioned that the children described in Gessell's book behaved like autistic children (Schopler, 1994).

EhUosiiphical influences of Kanner's work

Bleuler (1919) initially used the term "autism" to describe how adult schizophrenics remove themselves from reality into a life of fantasy. Kanner and 11

Asperger borrowed the term "autism" from adult psychiatry in order to describe

individuals "with progressive loss of contact with the outside world experienced

by schizophrenics" (Frith, 1993, p. 108). However, critics such as Wing (1976)

argued that the term "autism" used by Bleuler had a different meaning than the

term used by Kanner. Bleuler related autism to the immersion of the individual

into a fantasy world whereas the term as used by Kanner (1943) describes the

lack of creative fantasy that characterizes the behavior of these children

(Schreibman, 1988).

Theories of Causation

The history of autism, as well as other disabilities, has been influenced by

the philosophical trends of the time. The etiological study of autism first presumed a psychological connection where parents were held responsible for causing autism. A few decades later, the nature/nurture debate erupted. The biological and genetic paradigm emerged as an explanation for what the psychogenic paradigm had neglected. The psychogenic theory and the nature/nurture polemic will be discussed further from a historical perspective.

The nurture polemic;

The nurture polemic is also known as the psychogenic theory which emphasizes the influence that parents have on their children's behavior. The 12

psychogenic theory has its roots in Freudian psychoanalytic theory. Child

guidance experts and Freudian interpretations of psychopathology had a strong

influence during the post-World War II era which is consistent with Kanner's

(1943) explanation of autism.

The psychogenic theory focused on the explanation of human behavior.

This theory looks at the individual as the product of past generations and holds

parents responsible for both the child's personality and the child's psychological

problems (DeMause, 1974). This theory includes the concept of the tabula rasa

which argues that children come with innate abilities and their social

environment is responsible for their development. The psychogenic theory was

the influential paradigm during the time that Kanner (1943) published the

description of a distinctive syndrome that he called autism. In an earlier

publication of Kanner's entitled, In Defense of Mothers (1941), he expresses his

assumptions about child psychopathology within a philosophical context; "Why bother about questions of genetics, organicity, metabolism, or anything else if we can proceed promptly with the psychogenic denominator common to all disturbances o f the ego?. " (p. ) Kanner embraced with doubts the psychogenic perspective to provide an explanation for the cause of autism (Schopler, 1994). At that time there was 13

also lack of a clear evidence of biological factors affecting human behavior

(Shreibman, 1988). Kanner mentioned that: "autistic children come into the world with innate ability to form the usual, biologically provided affective contact with people" (Kanner, 1943, p. 250). Thus, assuming that autistic children had a normal biological make-up,

the philosophical influences of the time led Kanner (1943) to believe that autism

was caused by parental psychopathology. The mothers of these children with

autism were described as highly organized and educated, cold and obsessive who

"defrosted" to produce a child (Kanner, 1944). Karmer called these parents

"refrigerator mothers" (Kanner, 1949).

The etiology of autism as psychogenic was accepted for more than two

decades. Many researchers supported the psychogenic perspective that autism

was caused by cold-hearted parents, especially by an obsessive and distant mother (Bene, 1958; Despert, 1951; Lordi & Silverberg, 1965; Ogdon, Bass &

Thomas, 1968; Parrish, 1969; Schain & Yannet, 1960). For instance, Kanner found strong supporters like Betthelheim (1967) who wrote; The empty fortress: infantile autism and Ihe birth of the self. This book clearly blames parents for being the cause of their child's autism. Bettelheim (1967) also viewed tlie child's autistic behavior as a refuge from the parent's behaviors. 14

During the 1940's and 1950's, there was an increase in different

treatment modalities for autism (Ritvo & Freeman, 1977). Many believed that

with the appropriate treatment, autistic children would come out of their shell

(Creak, 1972). However, the treatment to "cure" autism consisted of removing

parents from their children (Baron-Cohen & Bolton, 1993). Some argued that the treatment should be geared towards the family and not the child (Clancy &

McBride, 1969). Psychoanalysis and "new socialization techniques" for parents were also recommended in order for parents to work through their own anxieties and frustrations in order to prevent a generational cycle of psychopathology. In addition, institutionalization was recommended for the children along with psychotropic drugs, megavitamin regimes, and electroshock (Clancy &

McBride, 1969; DeMause, 1974; Shreibman, 1988).

Thus, parents shouldered the burden of being the cause of their child's mental health problems. During the first two decades of the classification of autism, few investigators challenged the existent view that autism was the result of parental psychopathology (Byassee & Murrell, 1975; Eberhardy, 1967;

Eisenberg, 1956, Ney, 1979; Roy, 1974). However in 1975, Byassee & Murrell studied family interactions comparing eighteen families of autistic, emotionally disturbed, and normal children. The study concluded that there was no 15

difference between the families' interactional patterns. In addition, Creak in

1972 presented evidence that in spite of good parenting, children continued to be

autistic. The possibility was finally being explored that maybe the problem was

with the child and not the parents (DeMayer, Pontus, Norton, Barton, Allen &

Steeled, 1972; Eisenberg, 1956; Goodall,1971). In 1971, Goodall advocated for

professionals to stop thinking about parents as "emotional refrigerators."

The nature polemic

Kanner (1943) reported that autism had no connection with other organic

diseases. Karmer wanted to present the syndrome of autism as an entity separate of schizophrenia or psychosis. Karmer used the case of Heller's disease to bolster his own argument about autism's cause. Heller's disease was initially described in 1908 "assigned to children who had normal development for the first two years of life and then lost the ability to speak and deteriorated. Heller's disease was considered a form of "functional psychosis" until a brain biopsy in

1931 revealed that Heller's disease was due to an acute diffuse degeneration of the ganglion cells (Kanner, 1973, p. 155)." Heller's disease was initially pigeonholed as some form of schizophrenia but after evidence was substantiated that Heller's disease was the result of a brain insult, it was moved to the category of organic in nature (Kanner, 1973). 16

Kanner's early work incited a nature/nurture polemic in the field of

autism. Golfarb (1961) wrote an article about the relationship between

environmental and organic factors involved in the disorder. Other researchers

presented evidence that autism was associated with organic and genetic factors

rather than psychogenic ones (Chapman, 1957; Sutton & Read, 1958; Weber,

1966), and challenged professionals who were blaming parents for the cause of

autism (Schopler, 1971). In 1964, Rimland wrote a controversial paper that

separated him from the influential psychogenic theory by demonstrating that

Kanner's theory lacked evidence to explain the development of autism. Rimland

supported the likelihood of a biological cause for autism (Sanua, 1983; Schopler,

1994). Finally, the focus of the etiology shifted toward a model that brought

evidence that autism was a biological problem rather than a psychogenic one

(Ferster, 1961; Scain & Yaimet, 1960; Tonge, Dissanayake & Brereton, 1994;

Weber, 1966).

In 1973, Kanner himself mentioned the possibility of a biological or organic involvement in autism. Kanner shifted his psychogenic focus to a more holistic one "childhood autism is a total psychobiological disorder" (Kanner

1973, p. 100). Kanner advocated for the integration of biological, psychological, and social studies in autism. The 1970's brought a different perspective to the 17

study of autism and an eruption of numerous studies that supported Rimland's

suspicion (Bumbera, 1973; Moore & Shiek, 1971; Schopler, 1994). One

example is the work of Omitz and Ritvo (1968), which stressed that the

vestibular system was responsible for the spinning and rocking behaviors of

autism and the pathogenesis of autism. Ortnitz (1970) argues that the central

vestibular mechanisms play a role in the pathogenesis of autism.

Autism as a diagnostic category

Kanner's initial description; autism or schizophrenia?

Kanner's work broke ground because he identified autism as a separate entity from other childhood disorders (Schopler, 1994; Schreibman, 1988). Prior to Kanner, all the childhood disorders that were considered "psychoses" were classified as schizophrenia (Sanua, 1983). However, Kanner was ambivalent about the classification of autism as a separate entity; in an article published in

1949, Kanner discussed the close relationship of autism and schizophrenia. A controversy was ignited over distinguishing autism from schizophrenia. A number of articles argued that autism should be classified and differentiated from other disorders (Asperger, 1968; Bender, 1959; Bhatara, 1980; Bouchariat &

Audrey, 1966; Braconnier & Ferrari, 1982; Davis, 1975; DeMyer, Churchil,

Pontius & Gilkey, 1971; Eisenberg & Kanner, 1956; Rutter, 1972; Schumann, 18

1966; Stephenson, 1976; Stern & Schachter, 1953; Takahashi, 1961). Most of

the articles and books written about childhood disorders in the 1920's, 30's, and

40's do not describe autistic children except Kanner's article in 1943 (Rimland,

1994).

By contrast, many of the articles written about children's disorders in the

1970's, 80's, and 90's concern children. Kanner (1943) presented autism as a separate entity from schizophrenia and provided a new category to classify the specific childhood disorder, autism. Kanner (1973) mentioned that "autism served as a paradigm" (p. 134), because it broke the myth of classifying all atypical children into one category.

Kanner (1943) provided a detailed description based on the observation of eleven children who had the same characteristics; extreme aloneness from the very beginning of life, desire for sameness in their environments, lack of response to anything that comes to them from the outside world, inability to relate to people and situations, excellent rote memory, inability to use language, echolalia, pronominal reversal, and behavioral mannerisms (Kanner, 1943). In addition, Kanner mentioned that these children "are all unquestionably endowed with good cognitive potentialities" (Karmer, 1943, p. 247). 19

Diagnostic classification of autism

In spite of Kanner's work and other researchers (DeMyer, et al.,

1971; Dryer & Hadden, 1976; van Krevelen, 1973) that supported the

classification of autism as a distinctive category, the DSM-II (American

Psychiatric Association, 1968) in 1968 did not include autism (Schopler, 1994).

Finally, in 1980, the DSM-III (America Psychiatric Association, 1980) included

autism after wide discussion occurred supporting the existence of the different

types of autism (DeMyer, et al. 1971; DeMyer, et al. 1972; Wale, 1978).

Autism was included in the DSM-III as a disorder separate from other

disabilities such as mental retardation (Bhatara, 1980). The term Pervasive

Developmental Disorder was used to cover autism and similar disorders and to

differentiate autism from schizophrenia (Rutter & Schopler, 1992). The primary features included in the DSM-III consisted primarily of four areas; age of onset at 30 months of age, poor relatedness, communication problems, and perseverance. The DSM-III included only two types of Pervasive Developmental

Disorders: Infantile Autism, full syndrome (299.00) and Infantile Autism, residual type (299.01) (APA, 1980).

In 1987, modifications were made in the DSM-III-R (American

Psychiatric Association, 1987) after concerns were expressed about the 20

vagueness of the four categories of DSM-III (Factor, Freeman & Kardash,

1989). In DSM-III-R, the four categories were reduced to three. The age of

onset was increased to 36 months or later. The three main categories were

impairment in reciprocal interaction, deficits in verbal and nonverbal

conununication, and markedly restricted repertoire of activities and interests

(APA, 1987). The residual type of autism was eliminated. The two types of

autism described in the DSM-III-R were Autistic Disorder (299.00) and

Pervasive Developmental Disorder Not Otherwise Specified (299.80).

DSM-III-R satisfied some because there was a better description of behaviors

and more "sensitive" indicators in the autistic disorder category; however, the

Pervasive Developmental category was highly criticized because it did not provide any indicators at all and it was misleading to what constitutes such a category (Factor, Freeman & Kardash, 1989).

The DSM-IV (American Psychiatric Association, 1994) was published in

1994. Once again, a debate in the literature had been held about what types of autism should be included or not (Cotton, 1993; Rutter & Schopler, 1992;

Rasmussen & Sponheim, 1993; Tsai, 1992; Volkmar, 1992). The DSM-IV included five types of pervasive developmental disorders; Autistic Disorder

(299.00), Rett's Disorder (299.80), Childhood Disintegrative Disorder (299.10), 21

Asperger's Disorder (299,80) and Pervasive Developmental Disorder Not

Otherwise Specified, including atypical autism (299.80) (APA, 1994). Some

argue that the disorders included in DSM-IV have been included based on large

amounts of empirical data that support the presence of the disorders such as

Rett's syndrome and Asperger's disorder (Cotton, 1993; Rasmussen &

Sponheim, 1993; Szabo & Aber, 1992; Tsai, 1992). The task force of the

DSM-IV was pressured to include a developmental perspective in the diagnosis

of the Pervasive Developmental Disorders; "the qualitative perspective that define these conditions are distinctly deviant relative to the developmental level or mental age " (APA, 1994, p. 65) and a biological perspective; "The Pervasive Developmental Disorders are sometimes observed with a diverse group of other general medical conditions (e.g., chromosomal abnormalities, congenital infections, structural abnormalities o f the central nervous system) " (APA, 1994, p. 65)

Although the literature about the use of DSM-IV and childhood autism is scarce at this time, the inclusion of more types of autism is an improvement from DSM-III and DSM-III-R. DSM-IV has included more descriptive and etiological (First, 1992) information about the different types of autism including diagnostic features, associated conditions, laboratory findings, etiology, prevalence, physical, general medical conditions, and differential diagnosis. 22

DSM-IV changed from a set of indicators to a more descriptive and informative

narrative about the disorder. It has also included the associations between

psychological and medical conditions (Stoudemire, 1993). Psychiatry and

neurology have always had arguments about whether neurological based

problems should be classified under neurology or psychiatry. From a

cross-cultural perspective, it has been discussed that DSM-IV is not useful in so

called Third World countries because of the heavy emphasis that DSM-IV makes on the biology of certain disorders (Feinstein, 1993). Some countries do not have the medical sophistication to make some diagnoses. The argument that

Sanua (1982) presents, that autism is not present in some cultures, is questionable for this reason. Overall, the area of childhood disorders has been improved and includes one of the largest sections in the DSM-IV (Kutchins &

Kirk, 1993).

The controversy about the types of autism still continues and will continue. Supporters of the view of more categories argue that not all autistic children are the same. Rutter and Schopler (1992) add to this argument by their view that autism should be approached not from the point of etiology but instead from the ways that the disorder presents and the types of services that are needed. They add that a single diagnosis limits the provision of appropriate 23

services such as treatment and education. Further research is needed to see if

the types of Pervasive Developmental Disorders included in the DSM-IV serve

children better in terms of diagnosis, treatment, research, and education.

Is autism a Pervasive Developmental Disorder?

Since the inclusion of autism in the DSM-III, all the subsequent manuals,

DSM-III-R and the DSM-IV, have placed the different types of autism under the umbrella of Pervasive Developmental Disorders, eliciting a controversy about what term should be used (Rutter & Schopler, 1992). The argument is that autism has more in common with developmental problems such as mental retardation than with emotional disorders of childhood (Baird, et al., 1991).

The term "autism" should not necessarily be accompanied by the adjective

"pervasive". As Baird et al., (1991) have pointed out: "autism and autistic like conditions are not necessarily pervasive. Rather, they constitute disorders in which there are specific deficits in social/cognitive functioning. If anything, particularly when there is not associated mental retardation they may be classified more appropriately as coming within the specific developmental disorders category" (Baird, atal., 1991, p. 363). Wing (1992), in an article called, "Is autism a pervasive developmental disorder?", argues that the term Pervasive has no value as a diagnostic system of classification because the meaning is unclear and it constitutes a specific developmental disorder and not a pervasive one (Rutter & Schopler, 1992). 2^^

There is pressure to change the name from Pervasive Developmental Disorder to

its original category, Autism (Rutter & Schopler, 1992). Rutter and Schopler

(1992) argue that the term Pervasive Developmental Disorder (PDD) is not a

diagnosis but more a heading to describe a form of a developmental disorder.

However, they point out that some children who are classified as PDD might not

receive certain services if the disorder is not labelled autism. Furthermore,

Rutter & Schopler suggest the use of the term "autism spectrum disorders" to

replace the term Pervasive Developmental Disorder as a broad category.

The impact on parents of children with autism

In addition to understanding the etiology, theories, classification, and current approaches to autism for this research inquiry, it is important to review the literature on the impact of autism on parents. The etiological history of autism clearly demonstrates how parents were viewed as being the producers of psychopathology. Many other causes of disabilities have also been imposed on parents (Morgan, 1988). Since the classification of autism as a distinctive diagnostic category separate from childhood schizophrenia (Kanner, 1943), a review of the literature has shown that the cause of autism has been associated with parental characteristics such as social class (Kanner, 1943; Lowe, 1966;

McAddo & DeMayer, 1979; Sanua, 1981; Schopler, et al. 1979), emotional 25

instability (cold parents, personality disorders, etc.) (Bene, 1958; Despert,

1951; Kolvin, Garside & Kidd, 1971; Ogdon, Bass & Thomas, 1968; Takatomi,

Suzuki, Dendo & Watanabe, 1974), stress (Akerly, 1975; Bristol, 1979;

Holroyd, Brown, Wilder & Simmons, 1975), family dynamics (Allen et al.

1971; Byassee & Murrell, 1975; Takatomi, Suzuki, Dendo & Watanabe, 1974),

age (Allen et al. 1971; Bristol, 1979), and poor parenting skills (Bettison, 1974;

Mandel, Marcus, Roth & Berenbaum, 1971).

As Rimland mentions, the psychogenic theory was accepted for about

three decades as the only cause of autism, and as "a proven fact" (Rimland,

1994). Some claim the lack of empirical evidence to demonstrate that autism

was an organic disorder assisted with the overemphasis on social causation

(Sanua, 1981). Others believed that some children presented a biological

vulnerability to autism which was exacerbated by deficient parents (McAdoo &

DeMyer, 1979).

Rimland (1964), a psychologist and a parent of an autistic child, wrote a

book called M anlik autism: The syndrome and its implications for a neural

theory of behavior. Rimland's book served to break apart the fallacy that autism was associated with parental psychopathology and also discredited the theory that autism is an emotional disorder. Rimland provided a hypothesis that autism was 2 6

caused by biology. Parents and professionals who were looking for answers

found Rimland's work to be a new turn in the inquiry of the cause of autism.

Rimland (1994) mentions that the psychogenic view "caused the parents great

harm in terms of guilt, grief, and loss of confidence" (Rimland, 1994, p.4).

Rimland's contributions to the paradigm shift in autism research helped not only

to remove the blame and guilt from parents but also spurred the search for new treatment techniques and educational programing for children.

In conclusion, the early understandings of autism were strongly influenced by psychogenic theory. As research progressed, the cause of autism moved from psychogenic factors to biological factors; however, biology was not accepted as an explanation for external factors but extended only to descriptions of factors of vulnerability (McAdoo & DeMyer, 1979).

There are some accounts in personal stories about what it means to have an autistic child (Beavers, 1982; Copeland, 1973; Greenfield; 1972; Hundley,

1971; Kaufman, 1976; Lovell, 1978; Park, 1982; Pieper, 1978; & Rowlands;

1972). These stories have helped to enlighten families from a parental point of view in terms of feelings, stmggles, overcoming guilt, and how to work the system. Such studies have contributed to making autism more understandable and less frightening for parents (Leonard, 1986). 27

Is the impact of autism on parents the same as any other disability?

The review of the literature presents different approaches that have

been taken of how parents respond to the discovery of a disability. Most articles

(Bolling-Bechinger, 1988; Cook, 1988; Dytrych, Tyl, Schuller, Helclova &

Berankova, 1991; Ellis, 1989) discuss the impact of a disability on parents from

the early bereavement conceptualization of Freud (1957) and Kubler-Ross

(1969) who envisioned a series of stages that parents go through. These stages

include: shock, denial, guilt, shame, anxiety, hopelessness, blame, anger, fear, and acceptance.

Flagg-Williams (1991) conducted a literature review of different perspectives beginning in the early 1960's with stage theorists to current research on family/child/environment interactions. Flagg-Williams concluded that the literature can be classified under three major headings; 1) chronic sorrow, mourning, shock, and extensive reactions, 2) family stress, coping, and reciprocal influences in the environment, and 3) social networks. Davis

(1987), however, criticizes the use of a theory of stages to explain a child's disability because such a theory assumes that the stages are time limited and sequential. The impact of disability on parents does not occur in linear fashion.

Their grief is usually mixed with confusion and uncertainty, and parents experience different feelings, often simultaneously, and in varying degrees

according to the nature of the disability. Chronic sorrow should be viewed as

functional and characteristic of parents with disabled children. Davis (1987) adds

that these theories do not take into account the nature of the disability, the

individuals involved, and cultural supports. Disability should be viewed as a

continuum and from a holistic perspective.

Autism is a disorder that is rarely diagnosed at birth (Ohta & Nagai,

1987). Parents of children with autism experience a different kind of impact in

coming to grips with their child's disability in comparison with parents of children with other more visible disabilities (Baron-Cohen & Bolton, 1993).

Autistic children are bom with "normal" characteristics, and the problem begins to be noticed in the first two years of life, depending on the severity of autism

(Ohta & Nagai, 1987). Parents of autistic children develop a series of concerns about their child's development and suspect gradually that there is something wrong. For some parents the concept of a normal child has already been formed because most autistic children achieve their motor and fine developmental skills

(Kretochovil & Devereus, 1988; Morgan, 1988; Wesiner, Breizer & Storze,

1991). However, the discovery that a child is autistic does not always come as a shock. (Baron-Cohen & Bolton, 1993; Leonard, 1986). Bruey (1988) discusses 29

that when the diagnosis of autism is made, some parents experience a sense of

relief, even though they might not know what the diagnosis means and might be

unaware of its prognosis. Some have even questioned their own competence as parents in spite of the acknowledgement by professionals of the neurobiological

etiology of autism (Rodrigue, Morgan & Geffken, 1990). Despite such breakthroughs. Cutler & Kozloff (1987) argue society continues to impose on parents of autistic children misunderstanding about the disorder, burden responsibility, blame, and aloneness.

Autism in other cultures

The presence of autism in other countries is not as rare as we have been led to believe. Most of the studies about autism have been conducted in the

United States of America, Sweden, and England. However, that does not mean that autism does not exist in other parts of the world. Cormors (1993) argues the lack of studies from other countries suggest not the absence of autism but rather the lack of cross-cultural investigators. Sanua (1981, 1986) has been one of the few investigators to discuss autism from a cultural perspective. However, most of Sanua's articles (1979, 1980, 1981, 1983, 1984, 1986) discuss the presence or lack of prevalence of autism in non-industrialized countries, still attributing the cause of autism to psychogenic theory, blaming it on the nuclearization of the 30

family and problematic mother-child bonding (among other causes) in developed

countries.

A brief look at the literature regarding the presence of autism in other

countries illustrates that case studies and reviews have been written from

countries such as in Africa (Lotter, 1978), Australia (Gray, 1993; Gray &

Holden, 1992; Jackson, 1983; Prior, 1984), Belgium (Maes, Fryns,

Van-Walleghem & Van-Den-Berghe, 1993), Canada (Ammara, 1982),

Czechoslovakia (Nesnidalova, 1972), Colombia (Perez-Gomez, 1982), China

(Kuo-Tai, 1987), Denmark (Jorgensen et al., 1984), England (Burgoine &

Wing, 1983; Ricks, 1989; Rutter, 1983), France (de Ajuriaguerra, 1986;

Szweck, 1983), Germany (Gebelt, 1983; Glatzel, 1981; Guendel & Rudolph,

1993; Fehlow & Termstedt, 1985), India (Kapur, 1989), Italy (Montoli-Perani,

1993; Piperno & Ruggero, 1982; Silvestrini, 1993), Japan (Honio, 1984;

Ishikawa, Ishizaki & Fukuyama, 1984; Ohta, Nagai, Kara & Sasaki, 1987),

Mexico (de la Puente, 1980), Poland (Grozca, Szumbarska & Puzynska, 1992),

Russia (Lebedinskaya & Nikolskaya, 1993), Spain (Basil, 1984; Benito-Arranz,

1983; Martos-Perez & Del-Sol-Fortea, 1993; Pedreira, 1992), Sweden (Gillberg,

1984, 1989 & 1991; Steffenburg, 1991), Taiwan (Li, Chen, Lai, Hsu & Wang,

1993), Yugoslavia (Nikolic, 1984). However, very few of these studies have 31

addressed the meaning of having an autistic child from a cultural perspective.

Some studies have addressed the cultural differences in behavioral

manifestations. Cormors (1993) suggests that the African and Chinese studies

done by Lotter (1978), and Kuo-tai (1987), show that the different manifestations

and/or identification of autistic behaviors vary from culture to culture.

In addition, few studies about parental perceptions of autism in different

cultures have been conducted. Ohta, et al. (1987), conducted a quantitative

study about the parental perceptions of autistic behavioral symptoms. The study

is largely concerned with the reliability of parental reporting of autistic

symptoms. The study concluded that Japanese parents of autistic children

"simply tend to want to ignore what they have noticed or to postpone acting on

it" (Ohta, et al., 1987, p. 560). The authors argued that Japanese parents tend to report problems at a later age compared with parents from the United States or

Europe. A similar study conducted in Sweden by Cederblad (1988), which compared 442 Sudanese children, 440 Nigerian children, and 345 children from

Sweden, concluded that mothers in rural areas reported lower frequencies of disturbed children than mothers from urban areas.

One of the few qualitative studies that explored the meaning of autism from a cultural perspective was Connors' doctoral dissertation (1993). 32

Connors (1993) conducted an anthropological study of the Navajo Nation using

fieldwork methods. The research was conducted over a 16 month period. The

purpose of Connors' study was to investigate the Navajo perceptions of social

competence from a cultural point of view. The study argues that the Western

definition of autism is manifested in social deficits and social competence.

Social competence is defined differently depending on the socio-cultural grouping of traditional, semi-traditional, and modern Navajos. The study found that when many individuals with autism are younger they fulfill the role assigned as children. The concept of normality is seen in a broader context than Western definitions provide. The author advocates for the incorporation of social and cultural factors in the definition of autism. The Connors (1993) study suggests that once autism is defined, adequate care and treatment services can be delivered to the individuals and families affected by the disorder.

Another study conducted by Seo (1992) investigated the influence of cultural differences in reference to the behaviors or symptoms of autism. Seo

(1991) compared three groups of autistic children; 25 South Korean, 25

Korean-Americans, and 25 American children. The following behaviors were compared; self stimulation, language disturbances, social impairments, developmental disturbances, and overall behavioral disturbances. The Autism 33

Rating Scale (ARS) and the Autism Behavior Checklist (ABC) were used to

measure the above autistic disturbances. The author found differences on

social impairments and developmental disturbances between the group of South

Korean children and the American children. However, Seo (1992) concluded

that these differences appear to be the results of differences in symptoms and not a result of differences in parental perception that could characterize the two groups.

Another aspect regarding autism in other cultures includes the views of professionals about causation. These views might influence the incidence, the reporting, the knowledge, and the treatment of autism in other countries. It also might directly influence the parents' belief about the causation and identification of behavioral symptoms. Sanua (1985) conducted a cross-national survey with professionals in the United States and Europe in order to explore their opinions about the cause of autism. The study was designed using a similar methodology from a study conducted by Rogan, Dunham, and Sullivan (1973). Rogan et al. studied the opinions of professionals about their views on the causes of schizophrenia. Sanua (1986) developed a similar questionnaire that he sent to

500 professionals in Europe and the United States. The response rate was 56%. 34

The questionnaire included the 12 major etiological factors of autism divided into

three major subdivisions: a. Biological/Genetic 1. organic factors 2. genetic factors 3. metabolic factors 4. constitutional factors b. Environmental/Physical 5. birth complications 6. viral factors 7. pollution, diet and environmental hazard 8. receptive language c. Environmental/ Social-familial 9. parental psychopathology 10. disturbed family interactions 11. deficient mother-child interactions 12. cultural factors (Sanua, 1986, p. 21-24).

Note: Constitutional factors are "basic physiological tendencies that are believed to contribute to personality, temperament, and the etiology of specific mental and physical disorders. These factors include, e.g., body build, hereditary predispositions, and physiological characteristics (circulatory, musculoskeletal, grandular, etc.). " (Goldenson, 1984, p. 174).

The study concluded that professionals in the United States believe that

autism is caused by genetic/organic factors. European professionals believe that autism is caused by environmental factors such as familial. The 12th etiology,

"cultural factors, " was considered less important to professionals in the United

States and Europe. In conclusion, the literature review reveals that the meaning of autism from a parental perspective which includes cultural factors is limited. 35

Hispanics and Autism

According to Sanua (1981, 1984), the literature indicates that autism is

less frequent in different cultures and rare among Hispanics. Cultural studies

about disability have suggested that the perceptions of normality vary from

culture to culture. In terms of autism, behavioral manifestations of the disorder

also varies from culture to culture. Literature on the parental perception of

autism in the Hispanic culture is limited, as are studies concerned with childhood

psychopathology and culture. Very few studies have addressed this issue (Canine

et al. 1987; Cervantes & Arroyo, 1994; Krener & Sabin, 1985; Rogler, 1993).

The American Psychiatric Association has assumed that the symptomatology described in the DSM-IV is universally accepted. Cervantes and Arroyo (1994) argue that no validation studies have been conducted with Hispanic children to ensure the validity of many of the diagnostic categories. The authors consider some DSM-IV diagnoses to be culturally biased, among them is the diagnosis of autism. The potential sources of bias described by the authors are: "Impairments in social interaction and communication including language are elements of criteria. Although it may not make a difference in those persons with severe or profound mental retardation, it may in others with more intelligence. Social interactions and communication styles are strongly influenced by culture. " (Cervantes & Arroyo, 1994, p. 18) 36

The authors recommend:

"Clinicians should understand culturally relevant standards of social interaction and communication and consider the context o f the evaluation or treatment" (Cervanates & Arroyo, 1994, p. 18) Another important aspect to consider is the parental perception of autism from a cultural point of view. Parents are usually the ones to notice that there is something "wrong" with their children. Professionals should be sensitive to cultural prescriptions of normality and perceptions of disability. Cultural differences will impact on the understanding of diagnosis, recommendations, treatment, and education of children with autism. More studies are needed about parental perceptions of childhood disability in order to provide services that are sensitive to the group being served.

This study aims to develop an understanding of how Hispanic parents interpret autism. The refinement in such understanding will ideally lead to the development of interventions, practices, policies, and services that are sensitive to the needs and cultural perceptions of Hispanic parents who have children diagnosed with autism. CHAPTER in

METHODOLOGY

INTRODUCTION

listic Approach to inquiry: "Ways o f knowing are inherently culture-bound and perspectival. " (Lather, 1991, p. 2 ) The purpose of this study was to gain a broader and deeper understanding of how Hispanic parents experience autism. In order to achieve this goal, the study was both descriptive and exploratory and was grounded in a postpositivist tradition. The use of naturalistic inquiry and qualitative methods for this study was advantageous for several reasons. First, qualitative inquiry was most appropriate because little is known about the phenomenon (Jorgensen,

1989; Strauss and Corbin, 1990). Second, qualitative methods are most suitable for emancipatory knowledge. Emancipatory knowledge encourages understanding, self-reflection and the empowering of individuals to gain self

37 38

understanding, self determination and space with the purpose of generating

theoretical knowledge (Lather, 1991). And third, Hispanics who believe in

non-traditional causes of disability tend to be hesitant to talk easily to outsiders

about their beliefs and interpretations of disability (Humm-Delgado & Delgado,

1986). Therefore, qualitative methods of inquiry allow more of an opportunity

for success in obtaining this kind of information. The researcher used prolonged engagement and other qualitative methods with participants to develop trust and to obtain information about their perception of disability.

Qualitative research methods and naturalistic inquiry were believed to be the most effective method for dealing with multiple realities and meanings. This study dealt with the stories of Hispanic parents of autistic children and their interpretations of such disability within the cultural context.

Implications for Social Work Practice

Naturalistic inquiry operates from the stand point of the human construction and discovery of meaning and reality (Goldstein, 1994). Social work as a helping profession is concerned with the enhancement and restoration of individual and social functioning (Meyer, 1995) based upon a comprehensive understanding of the client's life, space, experiences, and the phenomenology of such individual perceptions. Naturalistic inquiry respects the importance of 39

obtaining the perception and beliefs of potential client populations so that

treatment can be emancipatory rather than prescriptive.

Design

This study was informed by the work of qualitative and naturalistic

research which include: Bogdan and Biklen, 1992; Crabtree and Miller, 1992;

Erlandson, Harris, Skipper and Allen, 1993; Glaser & Strauss, 1967; Glesne and

Peshkin, 1992; Lincoln and Guba, 1985; and Patton, 1990.

Emergent Design

Qualitative methods of inquiry are generally viewed as emergent. The

qualitative emergent research design emerges and evolves as fieldwork unfolds

(Crabtree & Miller, 1992; Patton, 1990). The researcher was "committed to the primacy of natural context" (Erlandson, Harris, Skipper and Allen, 1993, p.67) which requires flexibility. Design decisions depended on issues such as time, place, and human interactions. To gain the essence of the context, the naturalistic researcher had to negotiate shared realities with the members of that context (Erlandson, Harris, Skipper and Allen, 1993). Lincoln and Guba (1985) argue that methods can only be clarified as the research emerges. The essence of the naturalistic paradigm is the flexibility and emergence of the design 40

(Erlandson, Harris, Skipper and Allen, 1993) which provides an opportunity to

maximize participation of the population being studied.

While experimental research is designed in advance, naturalistic research

design remains somewhat tentative until its implementation. Nevertheless,

naturalistic research plans in advance some emergent considerations such as

identification, focus, conditions of entry, sampling, data collection, data

analysis, trustworthiness, time frame, ethical considerations, and leaving the

field, but all the time retaining a spirit of flexibility. The conceptual framework

of naturalistic inquiry suggests that there is not a single objective reality but

multiple interpretations or perceptions of such reality. The way things are and

the way things work depend upon the input of the human constructor (Erlandson,

Harris, Skipper and Allen, 1993).

Focus

The purpose of this research project was to discover the perceptions of

Hispanic parents with regard to their children with autism. This study made an attempt to develop an understanding of the following:

1. > What autism means to the Hispanic parents studied

2. > How Hispanic parents perceive autism

3. > How cultural aspects shape such perceptions 41

4. > How cultural perspectives influence the interpretation of

disability

5. > Recommendations of Hispanic parents about how to

increase effective intervention for other Hispanic parents

dealing with a child with autism.

Gaining Entry

The process of gaining entry is very crucial in qualitative research

because it is the door of entrance to inquiry. Glesne and Peshkin (1992) claim,

"if you receive full and unqualified consent, then you have obtained total

access" (p. 33). However, total access is relative because it requires a set of negotiations and sometimes it demands "settling" with whatever you can find.

This process of entrance to inquiry has a decided impact on the fieldwork done

(Erickson, 1986).

The initial process of gaining entrance was negotiated with a county center for developmental disabilities. This process was easier for me because I was an employee of the center and they have previous knowledge of my professional work. Due to the cultural similarities of the participants in this project, it facilitated the process of gaining entry in addition to the similar cultural background and similar language (Humm-Delgado & Delgado, 1986). 42

The participants for this study were Hispanic families. Previous research has

reported (Baca-Zinn, 1979; Becerra and Zambrana, 1985; Humm-Delgado &

Delgado, 1986) that when the researcher belongs to the same ethnic background

(one of their own), respondents might be more in favor of participating in the

research project. Most of the Hispanic families living in the county where the

research was conducted spoke Spanish. The ability of the researcher to

communicate in the participants' language facilitated the process of gaining entry

to the setting (Becerra and Zambrana, 1985). Another asset that facilitated the

entry process was that I already knew some families with autistic children.

These contacts enhanced the "snowballing" technique for obtaining participants

for my study. The process of gaining entry was emergent. This emergent model

helped me to redefine the research (Erlanson, Harris, Skipper and Allen, 1993).

The Setting of Study

The research was conducted in New Jersey, where there are a large

number of Hispanics. The county where the study took take place has a large number of Hispanics who are first generation in this country. The researcher has previous knowledge of the area.

The setting was an evaluation center for developmental disabilities that has a high number of Hispanic clients and serves approximately 30 Hispanic 43

children with autism. This research proposal was submitted to the Hospital's

Human Subject review and research committee for approval. Once approval was

obtained the center was informed. The center where the study took take place is

located in a public institution and is one of the biggest hospitals in the area. The

hospital has traditionally served a number of indigent individuals.

Sample and Population

Purposive and snowball sampling methods were used to find research

participants who were Hispanic and have an autistic child. These parents were

referred to the investigator by the child evaluation center in New Jersey. In order

to optimize the precision of the research, the population used in this project was

as homogeneous as possible in terms of disability. Patton (1990) avers that

homogeneous sampling used in qualitative research is effective for describing a

particular group in depth. This implies that the parents of children with autism

and their children should have similar characteristics. For example, a high

functioning autistic child such as one with Asperger's syndrome was not utilized in this sample. Evidence shows that Asperger's syndrome children have "better" relatedness than other autistic children (Gillberg, 1990). The level of functioning of the child was considered to be an essential variable to consider 44

because it can affect parents differently. However, the degree of severity of the

children's disability varied.

In qualitative research, a purposive sample cannot be totally drawn in

advance (Lincoln and Guba, 1985). In many respects the population was

emergent. The criterion for ending selection of new subjects was the point at

which no new information was emerging and the information became

redundant (Lincoln and Guba, 1985, p. 202). The other criteria for sample

selection was based on the purpose and rationale of the study (Patton, 1990, p.

185). With these considerations in mind, the sample size was determined as the research evolved. Patton (1990) mentions that "the sample, like other aspects of qualitative inquiry, must be judged in context" (Patton, 1990, p. 185). The total sample that participated in this investigation consisted of ten Hispanic parents.

These included seven mothers and three fathers, representing a total of seven families of children with autism.

Recruitment of Participants

Social workers and physicians working at this evaluation center in New

Jersey identified the population for the study. The center contacted by mail

Hispanic families of children with autism who were active clients at the evaluation center. They were informed by letter (see Appendix A) about the 45

nature of this research and their voluntary participation was requested. The letter

was sent to parents in both languages (Spanish and English), and was signed by

the two developmental pediatricians of the center. One is the medical director of

the center. Parents who were interested in participating in the research called

their social workers at the center or the researcher directly wanting to

participate. Information was provided by phone and any questions they had was

explained prior to expressing their willingness to participate. Most expressed that the letter sent was self-explanatory. The Criteria for selection was to be

Hispanic and to have a child between the ages of 3 to 15 years of age diagnosed with autism.

Pilot Study

A previous pilot study (Moreno, 1989) was used in the research with the hope of improving the quality of the present study. Eleven Hispanic parents of children with autism participated in the previous study. The children's ages ranged from 3 to 8 years old. Parents were interviewed with the purpose of developing a grounded questions for this project. The pilot study identified four key factors: first, cultural beliefs shaped the parents perception of their children with autism; second, the meaning of disability and psychopathology varied 46

among parents; third, folk beliefs were understood by participants as a possible

cause of autism; and fourth, services must be culturally sensitive.

Data Collection

Multiple methods of data collection were applied with the purpose of

achieving triangulation (Denzin, 1989). Since no single method of data

collection is sufficient for explaining and/or discovering phenomena, the data for

this study came from different sources. The three major sources were a)

participant observation, b) recordings, and c) individual and conjoint interviews.

1. Earticipant observation

Participant observation is fundamental in qualitative research. It

consists of the researcher's gaining familiarity with the research setting, the families becoming familiar with the researcher, and most important, the recording of the observations, hunches, and experiences that occur within the setting. In qualitative research, observation is essential in order to understand the context under study. Becerra and Zambrana (1985) comment that participant observation is important not only for the researcher to learn about the culture to be studied but for the participants to get to know the researcher. Participant observation is considered one of the most extensive and demanding techniques,

"the observer is always a participant in the observation" (Crabtree & Miller, 47

1992, p. 14). One benefit for the researcher was the familiarity with some of

the families who participated in this research. I was also familiar with the area

of research inquiry for 10 years and have been accustomed for 13 years with the

area where the participants reside. In order to get familiar with the participants,

I assisted at parent support groups and attended family and professional case

conferences at the center. I spent a total of six months at the research site.

Participant observation data were collected in the form of field notes. These notes were used to give a sense of context to the immediate situation within which the study was undertaken.

2. Recordings

A tape recorder was utilized during all the interviews with the consent of the participants (see issues of confidentiality). Audio tape recordings were used as the primary data collection tool. Audio tape recording ensured that everything that was said during the collection of data was recorded. Erlandson, Harris,

Skipper, and Allen (1993) mention that one of the disadvantages of using tape recordings is that the "respondent might be self conscious or overly aware of th interview" (p. 90). Recordings of reflective notes were made after each interview and days later as a form of field notes. This is a technique used by most qualitative researchers in order to write important information, code themes, and 48

make a record of ideas and hunches. It is also a way of documenting

information not captured by a tape recorder, such as observations and body

language.

3. Intem e^yjs

Interviews with the participants were semi-structured and in-depth.

Preliminary questions were developed as a guide for the key research questions

(see Appendix B). They were also used to give focus to the interview. All the

interviews were conducted face to face. Due to the nature of this inquiry, both

parents were interviewed individually and then together. Crabtree & Miller

(1992) claim that individual interviews provide more depth about a topic.

However, in conducting family research several authors recommend both

individual and family interviews (Lantz, 1993; Matocha, 1992; Snyder, 1992).

An advantage of conducting interviews with both parents is that they can give a collective perspective to the research questions not available in individual interviews (Fontana & Frey, 1994).

Phase one: Individual Interviews:

The initial phase of the interview was also an introductory way to gain rapport with the participants. The interviews were conducted at a location of preference to the participants. Such interview sites varied from their own homes 49

to my office at the child evaluation center. Parents were given information about

the nature of the research again and they read and signed the consent form.

Each interview was recorded with the consent of the participant (See Appendix C

& D). The interviews were not structured but they all started with one main

question; What does autisms mean to you? Other questions (See Appendix B)

were held on reserve, and only used if not covered during the interview by the

interviewees themselves. Those research questions that were not addressed were asked later. The interview was interactive and guided by the conversation in context. No notes were taken by the researcher during the interview in order to make it as unobtrusive as possible. Instead, reflective notes were recorded minutes after each interview without the participant being present. All first interviews were conducted before the second interviews began.

Phase two: interviews:

Phase two interviews consisted of interviews with fathers and joint interviews. For the individual interviews with fathers, the same process described in phase one was used. During the joint interviews, both parents shared their experiences of having a child with autism. Mothers spoke more during the joint interviews than did fathers. 50

Phase threeL interviews:

It was noticed that a redundancy in the issues discussed surfaced from the

first to the third interview. This phase consisted more of exploration of issues

discussed during the first and second interviews. Some issues raised before that

needed more context were discussed using member checking techniques.

At the end of the third phase, a survey (See Appendix E) developed

previously in the pilot study (Moreno, 1989) was given to parents with the

purpose of collecting demographic information for descriptive purposes only.

This survey was given to the parents at the end of all the interviews. No names were attached to the survey.

Data Analysis

In qualitative research a constant comparative analysis of data helps to develop grounded theory. The constant comparative method involves the analysis of the data from the beginning of the data collection until the end (Glaser &

Strauss, 1967). Grounded theory is a "general methodology for developing theory that is grounded in data systematically gathered and analyzed" (Strauss &

Corbin, 1994, p. 273). Glaser and Strauss (1967) suggest that grounded theory depends on participant observation and the method of comparative analysis aimed at the construction of theories. The constant comparative method is 51

essential for the development of grounded theory. It involves; (1) the

comparison of data within each conceptual category; (2) the integration and

linkage of categories; (3) the definition and specification of emergent theory; and

(4) the writing up of the theory (Glaser and Strauss, 1967, p. 105-115).

The data gathered in this study came from different sources such as

participant observations, recordings, and interviews analyzed both inductively

and deductively by the researcher. Crabtree & Miller (1992) add that the

"analysis of data is a subjective/objective dance toward contextual truth" (p. 13).

The constant comparative method guided this research. The techniques used for

the analysis of data were described in the following major categories:

1. Data Collection; Patton (1990) claims that "there is typically not a precise point at which data collection ends and analysis begins" (p. 377)

Lincoln & Guba (1985) add that "dam analysis must begin with the very first data collection, in order to facilitate the emergent design, grounding of theory and emergent structure of later data collection phases" (p. 242).

Part of the data collection is the transcription of audio tape recordings and the collection of all materials related to the research inquiry.

Because most of the parents interviewed spoke Spanish, most of the interviews 52

were conducted in Spanish with the exception of one parent who does not speak

Spanish.

2. Content Analysis; Crabtree & Miller (1992) claim that this is the

editing part of the data analysis. Content analysis is the process of identifying,

naming, coding, and categorizing the data. Coding, for example, assists in the

process of analyzing data. Open coding is the identification, examination, comparison, conceptualization, labeling, and categorization of data (Strauss &

Corbin, 1990). Categorizing follows coding and assists in the grouping of concepts (Strauss & Corbin, 1990). Data were placed into different categories or groupings by meaning.

Data were manually analyzed for content because data were in two languages and by a manual technique which provided the researcher closer proximity to the data being analyzed. The first step consisted of reading each transcription and applying labels on the side of each paragraph. Labels consisted of the researcher’s own label as well as words used by participants. A list of labels was created.

3. Inductive and Deductive Analysis; includes the integration of step 1

(data collection) and step 2 (content analysis). Patton (1990) argues that "the point of analysis is not simply to find a concept or label to neatly tie together the 53

data. What is important is understanding the people studied" (p. 392). In this

step, each label was written on a paper as a list of labels or codes. Each label

was read and then placed into categories that emerged from the labels. After

each category was created each label was written under the category. Then

"themes" were generated from the categories, in order to verily the themes and

always using the "constant comparative method" by Glaser and Strauss (1967).

Strauss & Corbin (1990) mention that in analyzing data there is a constant

interplay between proposing and checking (p. 111). The "cut and paste"

technique was used. Each transcription was read again, "pieces" of labels were

placed under each category and then placed into each theme. This process allowed me to faithfully identify the themes.

4. Data Interpretation and Report W riting; After the data were organized and the description was completed and the themes and linkages of concepts were made, the final step was the interpretation of the data in terms of causes, consequences, relationships, and discovery. "Interpretation means attaching significance to what was found, offering explanations, drawing conclusions, extrapolating lessons, making inferences, building linkages, attaching meanings, imposing order, and dealing with rival explanations, disconfirming cases, and data irregularities as part of testing the validity of an 54

interpretation" (Patton, 1990, p. 423). Once the data were written translations

occurred. Two translators and a computer software package of translations were

used as methods of translations. The use of software was discontinued because

its literal translations changed the meaning of the translation. This study aimed

to ensure that the meanings of the narrative did not get lost in the translations:

for this reason two translators were used. One of the translators was a native

Spanish speaker and the other was a native English speaker with a Master's

degree in Spanish.

TRUSTWORTHINESS

There are current discussions about the use of the concepts of validity and reliability to assure the arriving at some "truth" (Kvale, 1989). For instance, some critical researchers reject the notion that research descriptions can accurately portray reality as a tangible, knowable, and cause-and-effect proposition (Kincheloe & McLaren, 1994). Kvale (1989) opposes the concept of validity as used in the positivist paradigm and argues that the concept "neglects the multiple individual experiences of reality, they all have their own truth.

Truth is a mirror of reality, knowledge is a representation of the objective world, and true knowledge corresponds with the world of objective and quantifiable facts" (Kvale, 1989, p. 76). Qualitative research is more concerned with 55

understanding. Lincoln and Guba in 1985 devised a set of standards for

qualitative research into roughly commensurate quantitative research terminology

and this effort started a heated debate. Lincoln and Guba (1985) set forth

techniques to test the trustworthiness of qualitative research parallel by the

standard view of scientific research on validity and reliability. Internal validity

was parallel with credibility, reliability with dependability, and objectivity with

confirmability (Lincoln & Guba, 1985; Guba & Lincoln, 1994).

A new view takes the debate into consideration by accepting that such a thing as "an objective world" is non-existent, and that there are multiple interpretations of reality. Quantitative research departs from rigorous activities understood as functional research tools by quantitative research; rather the concepts of validity and reliability used in qualitative research have been formulated along with an overriding need for activities that help with the understanding and interpretating of data (Wolcott, 1994, p. 349). In a broader perspective, trustworthiness is essential in any qualitative or quantitative research

(Lincoln & Guba, 1985) because it forces the researcher to identify and examine the possible sources of invalidity (Kvale, 1989) and because inquiry must guarantee some measure of credibility (Erlandson, Harris, Kipper, & Allen,

1993). Glaser and Strauss (1967) mention that verification in the research design 56

is part of theory development because it provides a tool of integration within the

research process with continual checks, plausibility, and trustworthiness.

Erlandson, Harris, Kipper, & Allen (1993) add that "the naturalistic researcher is as much concerned with verification as with discovery" (p. 36). Lincoln and

Guba (1985) advocate for establishing criteria that judges for the goodness or quality of an inquiry. Kvale (1989) claims that in qualitative research,

"validation becomes investigation, continually checking, questioning, and theoretically interpreting the findings" (p. 77). With this is mind, Lincoln and

Guba (1985) have established a set of criteria to establish confidence in the

"truth" of the findings, its applicability, consistency, and contextual findings.

In my study an attempt was made to establish the trustworthiness of the study. The categories that guided this process were credibility, transferability, dependability, and confirmability. Trustworthiness, therefore, was centered in a variety of vantage points in this project; namely, it was derived from the participants, the methods used, the ethics of the researcher, and the synthesis of these elements.

Credibility

Credibility was established by using the following methods in order to establish an understanding of constructed realities in context. Prolonged 57

engagement: is the process by which the researcher spends sufficient time to

understand the field of observation and to build trust with the participants. The

researcher spent six months in the research setting in order to get familiar with

the families, the culture, and the environment being studied. My previous seven

years of experience in the field of developmental disabilities provided me with an

advantage in this area. I have worked with many Hispanic families who have

children with autism, and some of the families from the program where I have made contacts knew me before I embarked on the data collection phase.

Prolonged engagement facilitated my solicitation of new families in the program. It also enhanced the development of trust. Lincoln and Guba (1985) mention that trust is developed with daily engagement; from a Hispanic cultural point of view, it is customary to engage people before conducting other business.

An attempt was made to be sensitive and culturally appropriate with the participants; in these respects, prolonged engagement was essential in this inquiry.

Persistent observation. is achieved by "consistently pursuing interpretations in different ways in conjunction with a process of constant and tentative analysis" (Erlandson, et al. 1993, p. 31). This approach allows the researcher to understand the participants, their realities, interpretations, and 58

contexts. Field notes of observations were essential for data analysis. However,

in order to achieve trustworthiness of the observations, they were written in a

more contextual manner rather than single observations.

Triangulation: allows the researcher to see inquiry from different

perspectives. Triangulation was obtained by using different kinds of information

for the collection of data. I obtained data not from a single source but from

several sources such as tape recordings, field observations, unstructured and semi-structured interviews, telephone conversations, etc. These elements helped me to ensure credibility in this research.

Peer Debriefing: involved the evoking of perceptions, insights, and analysis with a peer who was outside of the context being studied. Peer debriefing helped the researcher to clarify interpretations, to refine and redirect the inquiry process, and to understand meaning (Erlandson et al., 1993). Two peer debriefers were used. One peer debriefer has knowledge of families and children with autism, and the other one brings insights about Hispanics to the study. Sessions with the peer debriefers took place biweekly and more often as needed.

Member checking: there is controversy surrounding member checking because it questions truth and the "ultimate answer" (Wolcott, 1994). Member 59

checking is more concerned with the conversation about a reality and the

reaction to an interpretation for the creation of knowledge, "The validity of an

interpretation is worked through a dialogue" (Kvale, 1989, p. 83) and it is

negotiated among people who share decisions and actions" (p. 86). Member

checking is important since it allows the researcher to clarify information reported previously by the participants. It allows the researcher to double-check data reported by participants in order to increase the trustworthiness of the observations and the data obtained. In this study, member checking occurred formally at the end of the interviews and informally during the conversational data gathering. The purpose of member checking were to check with participants about correct use of wording, analytic categories, interpretations, and conclusions. This step was built into the research from the beginning to the end.

Translations were done after the data was displayed in the form of a report. Two translators were used for this process. One was a native Spanish speaker and the other one a native English speaker with knowledge of Spanish, who recently graduated with a Master's degree in Spanish. Information was translated by one translator first and then the second translator double checked for 'accuracy' meaning captured in the translation. Information that did not "fit" 60

as accurate was translated by someone other than the original translator. Since

some Spanish words have different meanings in different countries, participants

were asked for meanings of expressions. Because the purpose of qualitative

research is to capture meaning, translators served as "translator debriefers"

in order to derive understandings and feedback from translations as they applied

in the contextual setting.

Transferability

"An inquiry is judged in terms of the extent to which its findings can be applied in other contexts or with other respondents" (Lincoln & Guba, 1985, p.

290). Qualitative research is not interested in generalizations, but is concerned with the application of an inquiry across contexts. "Transferability across context may occur because of shared characteristics" (Erlandson et al., 1993, p.

32). Two strategies facilitate transferability;

Thick description: the naturalistic researcher made attempts to describe with detailed descriptions the interrelationships and the intrinsically of the context being studied (Erlandson at al, 1993, p. 32).

Purposive sampling: Erlandson et al. (1993) discusses that transferability can occur by using this "sampling procedure that is governed by emerging 61

insights about what is relevant to the study and purposively seeks both the typical

and the divergent data that these insights suggest" (p. 33).

P ependability

Dependability was achieved through consistency in the trackability of the

data, interpretations, analysis, and reporting of the inquiry. Consistency involved

the use of methods that establish credibility and provide evidence for an "audit

trail" (Erlandson, et al., 1993; Lincoln & Guba, 1985). These elements such as

interview notes, researcher's log, record keeping, transcripts, translations, and

records of data analysis were maintained to determine the dependability of the themes that emerged for analysis in the finished product.

C.Qnfinnabllity

The data should be open to public scrutiny in order to allow for observations based on the context rather than the researcher's biases. "This means that the data (constructions, assertions, facts, and so on) can be tracked from their sources, and the logic used to assemble the interpretations into structurally coherent and corroborating wholes is both explicit and implicit"

(Guba & Lincoln, 1989, p. 243). Confirmability insists that the data, analysis, and findings are grounded in the participants and the context and not only in the researcher's point of view. All the information obtained from the participants. 62

observations, and the researcher's data analysis and research logs were kept in

chronological order and open to external reviewers for possible future judgments

about the inquiry.

Protection of Participants

Every participant had the right to voluntarily participate in this project.

Also, the participants were individually informed that they could retire from this

project at any time during the duration of this study. Before participation began,

participants were informed about the purpose of the study. Participants in this

research project signed a letter of informed consent detailing their voluntary

participation and right to withdraw from this project.

Confidentiality was kept at all stages of the research. Participants chose nicknames to keep confidentiality and for identifying themselves in this study.

Taped interviews were conducted only with the written consent of the participants (see consent form Appendix C & D). All information was kept in a locked safe. Tapes will be erased after the publication of this research project in order to protect the confidentiality of the participants.

This research aimed to protect participants against physical or psychological harm. However, when people talk about their inner feelings, emotions that are difficult to deal with might be triggered (Lantz, 1993). Lantz 63

(1993) calls this experience the "focused reflection experience" (FRE) which can

be dangerous when the experience is evoked and the researcher does not help the

participant deal with the ensuing emotional experience in a constructive fashion.

The researcher is a clinical social worker who has been trained to handle any

immediate needs. A list of mental health centers in the area was kept in case a

referral was necessary.

Beginning with the next chapter, the participants narratives will be presented and analyzed. The data will be reported under a series of special headings:

1. "Why me?" (Chapter IV)

2. "How autism has changed our lives" (Chapter V)

3. "They are children too" (Chapter VI)

4. "After we are gone" (Chapter VII)

5. "We recommend", (Chapter VIII) 64

Table 1 Main Themes

"Why me?" "How autism has changed "They are children too" "A fte r w e a re g o n e" our lives” "We recommend"

♦ "He used to play by * "My life changed * "He has progressed" ♦ "It is forever" himself completely" ♦ "We need" * "It dysfunctions the * "They like to play" ♦"The future is scary" ♦ Why is God punishing family" ♦ "What helps" us?" * "It has affected our ♦ He is intelligent" marital relationship" ♦"An institution is not the * "That was horrible" • "It is a 24-hour-a-day-job' ♦ "He began to masturbate same" ♦ "She [mother] has no himself * "It is a cerebral independence" ♦ "Hope and meaning" deficiency" * "His siblings" * "We can't go on vacation" * "It is difficult to ♦ "Parenting a child with accept" autism" CHAPTER IV vraYME?

"Tu no aceptas eso coma una realidad en tu vida, coma que te da tanta pesar que tu tienes la impotencia de poder cambiar las casas, que ya se que nadie me puede decir que le va a dar un cerebra nueva a mi hijay tu tepreguntas:parque a mi? (Gersan's mother).

Translation: "You don’t accept it as a reality in your life, you regret that you are impotent to change things, I know that nobody can tell me that my child is going to have a new brain and you ask yourself: Why me?".

INTRODUCTION

This study represents the voices of the realities of ten Hispanic parents who have children with autism. Although their children's disability varied in severity and their experiences as parents were different, common themes emerged from their stories. Parents in this study spoke of their experiences, identified and described their reality as parents of a child with autism, as members of a cultural group, and spoke about their experiences of dealing with a

65 66

child with autism within a family and what it means to them having a special

child. The common themes that emerged from their stories are: "why me?",

"how autism has changed our life", "they are children too!", "after we are

gone", and "we recommend". Table 3 describes the categories in each theme.

This study aims to keep intact the context and the essence of the stories of

the ten Hispanic parents of children with autism who participated in this study.

In order to protect the confidentiality of these families, the names used here are

pseudonyms and were chosen by the mothers; only they will be able to recognize

themselves. The countries of origin will not be associated with each child because they can be easily identified. Chapter Four begins with a brief description of the children with autism and their families in order to provide context and information to the themes that emerged in this study.

This chapter includes a description of "why me?" which includes the initial perception and interpretation of autism. It is organized into five categories using the participant's own words. They are: "He used to play by himself, " "Why is God punishing us?f "That was horrible," "It is a cerebra deficiency, " and finally "It is difficult to accept. " 67

A brief description of the families and children

For a complete detail and percentages of demographics see table 2 and 3.

On page 68. The demographic information obtained such as age, country of

origin, etc. represents data on seven mothers and six fathers. Data on one father

could not be obtained because his whereabouts were unkown. However, items

such as income represents only the seven families interviewed. See table 2 and 3

for more details.

Jesus is a three-and-a-half year old male who lives with his parents and a

twin brother and older sister. Jesus was diagnosed at two and a half as being

autistic. His mother comes from a different Spanish speaking country. He currently takes medication for his hyperactivity. He has no language facility.

Mario is a fifteen year old male who lives with both parents who came to this country 30 years ago. Mario is the youngest child. His has two older brothers who do not live in the household. Mario was diagnosed as autistic at the age of four. He has a long history of behavioral problems and is taking medication. He speaks some words.

Daniel is an eleven year old male who lives with both of his parents.

Both parents are living in the same house but they are currently separated. Both 68 Table 2 Demographic Characteristics of the Parents Mother Father N Average Range %N Average Range % Age 7 42 yrs 27 to 58 6 46 yrs 32 to 67

Place of Birth South America 3 43% 3 43% Central America 1 14% Caribbean 3 43% 2 29% USA 1 14% 1 14%

Time in USA 6 23yrs 14 to 38 6 27 yrs 11 to 46

Household Income Under 9,999 4 57% 10,000 to 24,999 2 29% 25,000 to 49,999 1 14%

Employed 2 29% 3 43% Non-employed 5 71% 2 29% Retired 1 14% Not Available 1 14%

Level of Education None 1 14% Incomplete High Sch 3 43% 2 29% High School 2 29% 2 29% Incomplete College 1 14% 1 14% Not Available 1 14% 1 14%

Table 3 Demographic Characteristics of the Children N Average Range % Note: Information provided Is based on Age 7 10 yrs 3 to 15 7 mothers and 6 fathers. However, income Is based on information of 7 mothers and Number of Siblinos 7 4 3 to 5 3 fathers.

Bilinaual 7 100%

Lanauaae at Home Spanish 5 71% English Both 2 29%

Lanauaae child understands the most English 5 71% Both 1 14% Do not know 1 14% 69

parents are from the same country of origin. Daniel is the youngest of three

siblings. He was diagnosed at the age of 4. Currently he has a diagnosis of

PDD (Pervasive developmental Disorder). He does not have major behavioral

problems and has some language.

Gregorio is an eleven-and-a-half year male who lives with his mother and

older brother. Gregorio is the youngest of three brothers. He never met his

father. He was diagnosed as autistic at four years of age. He has no behavioral

problems. He has limited language.

Sergio is an eleven year old male who resides with his mother and

younger sister. He was also diagnosed as autistic at two-and-a-half years of age.

He never met his father. He has some behavioral difficulties for which he takes medication.

Roily is a four year old male who lives with both parents and his older brother. He was diagnosed a year ago as having PDD. His language is limited.

Roily's parents are from the same ethnic background. His mother is first generation bom in this country, and His father was bora in the mother's country of origin.

Gerson is fifteen years of age. He resides with his mother and three siblings. Gerson has two older brothers of ages 18 and 17 and a younger siste 70 who is 10. His parents are from different Hispanic background and are currently separated but bis father remains very close to the family. Gerson was diagnosed at the age of three -and-a-balf as being autistic. He has a history of behavioral problems and is taking medication.

"He used to play by him self’

Parents describe their experiences of how they noticed that their child was different. What sort of behaviors made them notice that their child was different. Daniel's mother: "I realized my son didn't talk like the rest, he didn't make sounds, he w asn 't... it was like he was on another planet." "Me daba cuenta que mi hijo no hablaba como los demas, no hacia sonidos, no estaba.. .y como que estaba en otro planeta"

Roily's mother: "You will call his name and nothing, he won't even acknowledge you were in the room. "

Person's father: "That was when she suspected [something], because he didn't act like a normal child ... and he yelled and screamed very sharply and loud and he never shared with other kids. " "Fue cuando ella sospecho porque la actitud no era de un nino normal... y eso el gritaba y daba unos gritos muy agudos, muy fuertes y no compartia con los demas ninos. "

Mario's mother: "He couldn't play with other kids because he played by himself. If he played with his stuffed animals, he put them all in line, gave each one a name and he never forgot the names. But nobody could touch the toys when they were lined up. " "El no podia jugar con otro nine porque el hacia su juego solo... Si jugaba con los peluches, el ponia todos los peluches en linea, le ponia 71

nombre a cada peluche y nunca se olvidaba como se llamaba cada uno pero nadie le podia tocar los peluches en linea. "

Jesus' father: "Sometimes I thought that when someone looked at him it was like he was out of his mind, I thought it was like, like he was trying to freak me out. " "Yo pensaba a veces que cuando uno lo miraba era que estaba fuera de su sentido normal, yo pense que estaba como, como decir tratando de sacarlo de quizio a uno. "

Sergio's mother: "I began to see that the kid had problems because you would talk to him, sometimes he understood what you were saying, sometimes he didn't." "Yo comenze a ver que el nino tenia problemas porque a el uno le hablaba, a veces habia cosas que el entendia otras que no. "

Roily's mother: "I know that he wasn't functioning, he wasn't doing everything, he just laid around, he wouldn't even cry."

Jesus' mother: "I knew it from when they [twins] began to be more active, when they began to run, to walk, to try to walk, to try to do things, I knew the twins were not the same. " "Yo sabia desde que ellos empezaron a comportarse, cuando empezaron a correr, a caminar, a tratar de hablar, a tratar de hacer las cosas yo sabia que ellos no eran iguales."

Having previous exposure to autism because of a family member brings a different experience:

Jesus mother: "I saw everything very clearly and I knew inside myself, deep inside, maybe in my unconcious, I knew he was autistic." "Yo lo tenia todo muy claro y sabia dentro de mi, yo sabia que era eso bien adentro, quizas dentro de mi inconsiente yo sabia que era autista. "

Parents became aware of their child's autism through different sources: 72

Mario's father: "When he was growing up and he didn't talk, then I would see the faces he makes and I realized he was autistic. " "El cuando fue creciendo y no hablaba entonces veo sus muecas y me di cuenta que era autismo."

Gregorio's mother: "My girlfriend told me, that is not normal, I think that you're going to have to look for someone to help you because she doesn't seem well or act right." "Una amiga me dijo eso no es normal, yo creo que tu vas a tener que buscar a alguien que te ayude porque parece que el no esta bien. "

Parents went to look for professional help to find out why their children were displaying such a different behavior:

Roily's mother: "There was a developmental pediatrician there and she saw his behavior and she said that he looked like he was autistic or that he had autistic behavior. "

Daniel's mother: "When they evaluated him, they made me realize that actually the child had that problem of autism because there were specific symptoms that one looks for, and when a child already shows a number of things then they call it autism. " "Cuando lo evaluaron me hicieron caer en cuenta que en realidad el nino tenia ese problema de autismo porque hay sintomas especificos que uno va recopilando y cuando los ninos ya tienen una cantidad de cosas entonces ya el problema se déclara autismo. "

Gregorio's mother: "What caught our attention was that he never talked and he did certain things with his little hands, moving his head all around, walking on tiptoes, lots of things... then from that time on was when I began to look for medical help." "Lo que nos llamaba la atencion era que el no hablaba y el hacia ciertas cosas con sus manitos, el movimiento de la cabeza para todos los lados, caminar en puntitas, muchas cosas... entonces ahi flie cuando empece a buscar ayuda medica hasta el dia de hoy. " 73

"VMiy is God punishing us?"

Knowing that your child is different brings a variety of explanations of causation. Why things happen is part of the individual's worldview and ±e worldview is linked to a context. Part of that context is culture, past experiences, ideology, religion, time in which events occurred. Parents expressed their contextual realities to explain what has happenned to their child:

Person's mother: "During my pregnancies, I always had negative thoughts, and I ask myself would it be possible for me to affect the baby with such thoughts? To affect his brain in some way? But I think no one wants to give birth to a sick baby, I don't think it's my fault, I always guessed it, the feeling was there but at heart I knew it wasn't my fault that he was bom this way. " "Durante los embarazos siempre tenia pensamientos negatives, yo digo seria posible que con esos pensamientos yo haya podido afectar al baby?, su cerebro de alguna manera?, pero digo no creo que nadie quiere que un hijo le nazca enfermo, yo creo que no es culpa mia, siempre lo supe, el sentimiento estaba ahi pero yo en el fondo sabia que no es culpa mia que el naciera asi. "

Jesus' father: "I say it could be from a blow because he suffered a lot when he was little. " "Yo digo que seria de algun golpe porque el sufrio mucho cuando pequeno."

Mario's father: "I don't know if my wife had some problem during labor. " "No se si seria en el parto de la mujer que tuvo algun problema. "

Daniel's mother: "I wanted to think that he had some nervous disorder because of his (erratic) movements that almost all nervous people have, some nervous tic. For me, that was a nervous tic. " 74

"Yo si pense que tenia algun desorden nervioso por el movimiento que casi toda la gente nerviosa siempre esta teniendo, algun tic nervioso, para mi eso era un tic nervioso. "

Rolly's mother: "He [child's father] said oh, what did we do? why is God punishing us for this?, what did we do wrong?"

Sergio's mother: "It could be because I was very depressed during my pregnancy. I don't know if that or something else... I worked like any normal person, no drugs or alcohol, and his father is a normal person." Seria porque yo en el transcurso del embarazo me sentia muy deprimida, no se si algo o depresiones, por mas que yo trabajaba como cualquier persona, nada de drogas, nada de alcohol, el papa del nino es una persona normal."

Person's mother: "I read a theory once, and I believe that autistic children were born that way when their mothers didn't want them, when the mother rejects them while she's still carrying them. Mine was an unwanted pregnancy. " "Yo lei una vez una teoria y creia que los ninos autistas nacian asi cuando las madres no lo querian tener, de que ellos nacen asi cuando uno los ha rechazado cuando estan dentro de uno, yo al nino fue un embarazo que no queria. "

Daniel's mother: "The truth is that sometimes he [the child's father] thinks that maybe God is punishing him, that he's done something bad. He thinks this shouldn't have happened, that God has been unfair. " "La verdad que piensa [referring to child's father] a veces que a lo mejor es un castigo de Dios, que el ha hecho algo malo, que Dios lo ha castigado, que no deberia haber ocurrido esto, que porque Dios ha sido tan injusto. "

Gregorio's mother: "I think that he caught something in the seventh month [ in the womb ], a simple fever left him this way. " "Yo pienso que lo que a el le dio a los siete meses una simple fiebre lo dejo asi." 75

Mario's mother: "He was on a respirator for about two days [after he was born], until he could breathe [on his own]. I think his brain didn't get enough oxygen and that has left him handicapped this way for the rest of his life." "Estuvo como dos dias en camara de oxigeno [al nacer], hasta que pudo cojer oxigeno y respirar [por si solo] Para mi que a el le falta es oxigeno que no le llego al cerebro y se ha quedado con ese defecto de por vida. "

When autism runs in the family, the belief of why it happened was more genetic

or biological:

Jesus' father: "My belief is that it depends on the type of blood one has.. something contagious, because blood is what feeds the human body, without healthy blood I don't think the body can function well. " "Mi creencia es que el tipo de sangre que pueda llegar a tener... una cosa contagiable, porque la sangre es la que evoluciona el cuerpo humano, sin tener una sangre saludable creo que el cuerpo no estaria funcionando bien. "

Rolly's mother: "It has to be some kind of different thing, like the chromosomes have to be different, there has to be something that is not right in the amnio and they just don't know how to interpret it. "

"That was horrible!"

After diagnosis, a common theme among parents was knowing that there was something wrong with the child, feelings of denial, guilt, helplessness, depression, sheme, the realization of "the loss of the perfect child" :

Gregorio's mother: "I thought that was going to happen. " "Yo pense que eso iba a pasar." 76

Daniel's mother: "My mind couldn't accept that I might have an abnormal child... I felt ashamed at first, and depressed. " "Yo no concebia en mi manera de pensar que yo tuviera un nino abnormal.".. "Me sentia avergonzada al principio, y deprimida."

Rolly's mother: "As a mother you want to think that you have a normal child. "... "You don't want to believe that something is wrong, you want to go for the second and third diagnosis."

Jesus' Mother: "One shuts things out in the mind that one doesn't want to accept or remember. Then when they told me, I realized that’s what it was [autism]." "Uno tiene las cosas reservadas en el cerebro que uno no la quiere aceptar y no quiere acordarse, entonces cuando me lo dijeron supe que era eso [autismo]." Person's father: "I felt completely off balance. Even his doctor, who had attended him since he was a baby, didn't diagnose it for a long time, maybe she hadn't seen other cases like this, and she didn't diagnose it until he was pretty big, maybe more than a year. " "Me senti todo desorientado, ni la misma doctora que lo atendio desde pequeno no lo diagnostico hasta ya lo ultimo cuando quizas no se habian tocado casos asi y hasta que estaba bastante grande quizas mas de un ano. "

Jesus! father: "Well, that was like a bombshell at the same time, because I exploded and I didn't want to admit it... I didn't want to accept it, so I became negative, I was very frustrated. " "Bueno, eso fue como digamos una bomba al mismo tiempo, porque explote y no lo queria admitir.".. "No lo queria aceptar por eso me ponia negative, yo lo que hacia era que me frastraba. "

Rolly's mother: "I wanted to die, all I did was cry because I wanted to cry. ".. "That was a horrible day in my life. "

Sergio's mother: "I felt guilty because I didn't give him enough attention to the child... I felt guilty for working so much and also, maybe the 77

woman [babysitter] who took care of him didn't spend enough time with him, and I felt guilty about that too. " Me sentia culpable porque no le habia dado esa atencion al nino .... me sentia culpable porque decia sera que yo trabajo tanto ... y tambien seria que sera que la senora que me lo cuidaba no le daba tiempo, entonces me sentia culpable. "

Jesus' mother: "Horrible, horrible because I thought it was my fault ... At first one cries a lot and thinks that maybe tomorrow they'; tell me it's not true. " "Horrible, horrible porque yo pensaba que era por culpa mia.".. "En los primeros dias uno llora mucho y piensa que quizas manana me digan que no"

When dreams do not materialize, suddenly the reality that hits there is something wrong with your child, as the following words convey:

Rolly's mother: "That was the whole thing of having two boys or having two children that close, that they were gonna be best buddies, best brothers or best brother and sister that whatever the case might be, they were gonna go to school together, they were gonna take care of each other and it turns, it turned out like that, you know that they are two different entities, totally different worlds, totally, it is sad, it is really sad."

Person's mother: "The child that could have been a third happiness for me... it's like my world ended, it's like my light in the sky was extinguished, it's like everything ended for me, and from then on nothing is very important any more. " "El nino que pudo haber sido una tercera felicidad para mi... es como que el mundo se me acabo, es como que me apagaron la lucecita que yo tenia en el cielo, es como que todo se me termino y entonces de ahi en adelante como que a uno no le importa mucho nada. " 78

Some parents felt a tremendous impact to the point of having self-destructive thoughts, loss of hope and pessimism, the augury that life was going to change;

Sergio's mother: "I felt like dying, and sometimes I wanted to hurt [in the sense of physical damage] myself or my child, but then there is a God who says, no, I have to fight for my child." "Me senti morir y queria a veces hacerme un mal para mi y para mi hijo, pero entonces hay un Dios que decia no, yo tengo que luchar por ese nino."

Person's mother: "I would think of the period when my child first became sick as something special in my life. It's a time of sadness, of impotence; it's, how can I tell you? it is like uneasiness, a question mark, it is hopelessness, unfortunately only negative things, sad because I can't tell you there is a ray of hope, because I've never had it [hope] ever since I found out he was autistic." "La epoca desde que el nino se enfermo la pondria en un parentises, algo especial en mi vida, es un tiempo de tristeza, es impotencia, es como decirte, es deshasosiego, es un signo de interrogacion, es desesperanza, desgraciadamente cosas negativas, tristes, porque no te voy a decir que es una lucecita, una esperanza porque nunca la he tenido, apenas supe que era autismo. "

Gregorio's mother: "That was something horrible, it was like the end of the world, something that one wasn't going to be able to live with, and that was never going to go away, that was never going to end. " "Eso fue algo horrible, eso fue como habersele acabado el mundo a uno, una cosa que ya uno no iba a vivir y que eso no se iva a pasar nunca, que no se iba a acabar. "

Daniel's mother: "I felt depressed and a little cheated because I said, now my life has to change, I can't go on working as I normally did. " "Me senti deprimida y un poco defraudada porque yo decia ahora mi vida tiene que cambiar. Ya no voy a poder seguir trabajando como normalmente lo hacia. " 79

Some of the mothers expressed that they felt that their husband and children were not understanding what the child had, feelings of being lonely, marital difficulties, doubting themselves about their parenting skills, hesitating about the diagnosis in spite of having latent signs of autism:

Jesus' mother: "At first everything was so wrong [referring to the father]. He didn't accept it, he said the doctors were wrong." "Al principio estuvo tan malo todo. [Refiriendose al papa] Primero no lo aceptaba, decia que los medicos se equivocaron. "

Rolly's mother: "My husband kept telling me there is nothing wrong with him, just leave him alone.".. "That's my frustration that he [father] does not talk about it, we should do this together and he doesn't, for a long time he was not educating himself, he didn't want to read a book about it and it is all part of the denial and he has two sons, these are his only two sons, this is his baby. "

Mario's mother: Even now his father still doesn't understand. " "El padre todavia no lo entiende a estas alturas. "

Daniel's mother: "My other kids didn't understand why this kid was like this, they said he was a rotten kid, and I spoiled him too much." "Mis otros hijos no entendian porque este nino [autistic] era asi, decian que era malcriado, me decian que yo lo consentia mucho." Claudia: "Did they ever make you doubt that [parenting skills]?" "La hicieron dudar alguna vez de eso?. " Daniel's mother: "Yeah, they made me doubt myself a lot until that movie, "Rain Man", came along. Then all of us went to the movie, and it helped them to see that yes, the kid [their brother] had a problem and that they had to help me. Then from then on they changed their attitudes [ways, thinking], and my situation got a lot better. My husband never wanted to accept that our son had a problem, really, until the boy began to hit himself. " 80

"Si me hicieron dudar muchas veces hasta que hubo esta pelicula que se llama Rain Man, entonces fiiimos todos al cine, eso les ayudo a ellos a ver que si, el nino ténia un problema y que tenian que ayudarme, entonces ahi ellos cambiaron la actitud y para mi fue mejorando la situacion, mi esposo nunca quizo aceptar de que el nino ténia un problema en realidad hasta que cuando una vez el nino comenzo a golpiarse el mismo."

Other parents experience uncertainty by having a physically healthy child and, yet, they gradually realize that something is vastly wrong:

Sergio's mother: "Over time, it is like a trauma the parent suffers because from the moment the kid is born and you see the defect, maybe you begin to accept it, but then over time as you see your beautiful baby seeming so normal, and when reality (finally) hits, the problem is even more traumatic for the parent because one lives with this illusion of a perfect, normal child, and when they tell you that your child has this problem, it is very traumatic for the parent. " "Con el transcurso del tiempo es como un trauma que el padre recibe porque desde el momento que un nino nace y Ud. le ve el defecto, uno quizas se llega a conformar pero despues del transcurso del tiempo que Ud. ve que su nino tan lindo, normal y cuando llega el momento de la realidad para Ud. es mas traumatizante el problema para el padre porque uno vive con esa ilusion de que el nino esta bien y lindo y todo y despues que te digan que su nino es un nino con problemas es traumatizante para el padre."

Rolly's mother: "When he was bom he was fine, 1 don't know what happened to him as he grew up..all of a sudden, I knew he wasn't functioning, he wasn't doing everything, he would just lay around, he would not even cry and I was like, look what a good baby I have, this kid is so good, you put him anywhere, you give him a little thing and he will be content.. " "Knowing that the child was fine at birth and now wonderinghow come he has a speech problem." "I just don't understand, they did that test [amniocentecis] and they didn't find anything wrong, they said that my baby was normal, what happened?. 81

Gregorio's mother: "When he was born, as far as I know, they didn't mention any problem to me. As far I can remember, Gregorio was very active from the time he was born to about six months old. " "Cuando el nacio que yo sepa no me dijeron que habia algun problema. Hasta donde yo me recuerdo Gregorio nacio un nino muy activo hasta los seis meses."

Sergio's mother: "They have done various tests on the boy, even a CAT scan, and all the results came out normal. His physical development is perfect, he doesn't have any [physical] problems." "Al nino se le han hecho varios experimentos sobre todo se le hizo el cat scan y el salio con eso normal, su desarrollo fisico es perfecto, el no tiene ningun problema. "

"It is a cereberai deficiency"

A definition of autism was given by parents; they had their own definition of what they thought it was

Gerson's father: "It is a very difficult illness, I understand it is a form of mental retardation with many variations. Many children can overcome this illness but others can't. It is a regressive illness because I understand that there are children who advance but then regress. A certain degree of normality is limited in these kids." "Es una enfermedad completamente dificil porque yo entiendo que es una forma de retardamiento mental con muchas variantes. Muchos ninos pueden superar esto de la enfermedad y otros no, tambien es una enfermedad regresiva porque entiendo que hay ninos que avanzan y retroceden, cierto grado de normalidad es muy limitado en estos ninos."

Gerson's mother: "I think it is an illness that greatly affects a child's capacity to develop socially and emotionally ... it is something very sad for a parent because one has neither time nor space for oneself. In my son's case, it's harder because we never know what to expect, he swings between extremes: Calmness, hyperactivity, all those things that steal one's control of life and can dysfunction [destroy] normal family life." "Creo que es una enfermedad que afecta muchisimo la capacidad de los ninos para desarrollarse emocional y socialmente..como padre es algo bien triste porque no le da espacio a uno, o tiempo. En el caso de mi hijo es mas dificil porque uno no sabe que esperar de ellos, hay situaciones bien extremas; tranquilidad, hyperactividad, todas esas cosas que lo saca del control de la vida y disfunciona mucho la familia. "

Jesus' father: "It is a symptom that develops in these kids and they don't develop a normal mentality. Sometimes they have problems understanding, sometimes they don't act normally, they scream or they communicate what they want in some other less than normal way. Maybe this illness exists within families because of the blood type or because of racial mixing." "Es un sintoma que se desarrolla en los ninos que en ellos no se desarrolla una verdadera prosperidad mental, que a veces tiene problemas en el entendimiento, que no actuan a veces en una forma normal, que ellos a veces cuando desean algunas cosas como bebidas o comidas, en vez de pedir gritan o lo dan a entender en diferente forma a lo normal. Tambien entiendo que es una enfermedad que no deja que el nino tenga un buen desarrollo mental.. ". "Posiblemente esta enfermedad exista entre familias a lo mejor por alguna anormalidad que exista en esa familia o por el tipo de sangre o por las mezclas de razas."

Daniel's mother: "It is a deficiency in brain function which is expressed in different ways. Overall it's also neurological because as they say, an autistic person's nerves are destroyed." "Es una deficiencia cerebral del funcionamiento del cerebro que se manifiesta en diferentes formas. Sobre todo es tambien neurologico porque como se dice, la persona con autismo tiene los nervios destruidos. "

Sergio's mother: "They are people who live in their own little world. Some kids make great progress and others stay stuck. " "Son personas que viven en su mundo que a veces hay ninos que tienen mucho progreso y otros que se estancan. " 83

Gregorio's mother: "For me autism is something that even now I don't understand. " "Para mi el autismo es una cosa que hasta el momento no lo entiendo."

"It is difficult to accept" Autism was difficult to accept by parents. However, they articulated that they accept their children but not the illness. Dealing with the uncertainty of autism is the most difficult part. Parents whose children have a more severe case of autism had difficulites accepting the challenge, but when autism is milder it is even more difficult to accept. Parents stmggle because their children do not have the classic symptoms of autism, which are not present in PDD children:

Rolly's mother: "The only thing that he does is that he jumps a lot, he is not scared of anything, he used to do something with his eyes, like flap his eyes, blink his eyes and they thought that it was self stimulation so that is why they classify him as PDD (Pervasive Developmental Disorder)... I don't see any characteristics of autism... "I was always a daydreamer and Roily is a daydreamer too, so if that is part of autism, I guess I must have it too..". "I want to believe that he has been misdiagnosed. "

Person's mother: "You don't accept it [autism] as a reality in your life; why me?" "Tu no aceptas eso como una realidad en tu vida; porque a mi?"

Daniel's mother: "I couldn't believe that my child was really autistic, so I took him to be evaluated time after time. Even now I still come back to that, but now at least I take him to be evalauted to see if he's made any progress... "I would like him to get over it, because it makes me very sad. " 84

"No podia consebir que en realidad el nino era autista, entonces he pasado de una evaluacion a otra evaluacion, hasta la vez todavia sigo con mi tema, por lo menos lo llevo para que le hagan evaluaciones para ver si ha avanzado..". "mi interes es para que saiga de eso [autism] pero me causa mucha tristeza. "

For some fathers, it might be difficult to accept that there is something "wrong"

with their children: Jesusl mother: "My husband and I had a lot of problems... every time he wanted to punish him. I'd tell him, 'you can punish him a hundred, two hundred times, but he's not going to stop doing what he wants', until finally he accepted that even if he said something a two hundred thousand times, he [the boy] wasn't going to stop doing it. " "Teniamos muchos problemas [con mi esposo] ... cada vez que el queria corregirlo yo le decia tu puedes corregirlo cien, doscientas veces, pero el no va a dejar de hacer lo que el quiere, hasta que por fin acepto que aunque le dijere doscientas mil veces el no lo iba a dejar de hacer. " Accepting the child is viewed differently from accepting the disability. You can accept the child, but not accept the disability:

Gregorio's mother: "I don't accept it [the autism] because I never thought he would have such a problem... From day one, I accepted him because he's my son." "No lo acepto porque no pense que el iba a salir con su problema..". "Hasta el dia de hoy lo acepto porque es mi hijo."

Sergio's mother: "I accept it, especially for myself [for my part in its cause?]. I lived with this illusion that this child would be born a perfect child, my son, a somebody. And then to see him, what happened to him, I was frustrated by my own illusions. It was very traumatic for me, you know, why me?" "Yo lo acepto, sobre todo para mi, yo vivia con esa ilusion que al nacer ese nino iba a ser mi hijo, un alguien manana, y despues ver que se me 85

frustra en el ese encanto que ténia yo, para mi fue traumatizante, el porque de esto?. "

Gregorio's mother: "It's just that it couldn't have happened to me, why me? That's the word that I always come back to, why me? It couldn't be, if I had more kids [who are normal]. " "Es que no me pudo haber pasado eso a mi, porque a mi? esa es la palabra que se queda siempre, el porque a mi? no puede ser, si yo tuve mas hijos [normales]."

Person's mother: "At least in my life, nothing worse could have happened to me than for my son to be like this. It's not that I don't accept it [the fact of the autism], it's just that I never wanted it. I’m not ashamed of him, but it's the worst, I don't know... It's like a blind love û that's what I have for my child, a blind love. " "For lo menos mi vida, nada peor me hubiera podido pasar que mi hijo sea asi y es que no lo quiera, no es que no lo acepte, no es que me de verguenza, es lo peor porque no se... el amor ciega y yo tengo un amor ciego por ese nino."

On the other hand there is a feeling of acceptance that if you brought the child to this world you have to take care of the "whole package":

Person's mother: "It is incredible how this child distorts my life, and at the same time, there's this great affection that we have for him, well, you just ... You can't really say just that you accept him, because we have always accepted him, we always spoil him and we treat him better. " "Bs increible como le distorciona a uno la vida el nino y al mismo tiempo por el carino por el camino que le tenemos pues uno.. no decir lo acepta porque de aceptarlo lo hemos aceptado siempre uno lo consiente (de mimar) y lo trata mejor. "

Gregorio's mother: "I say that if I looked for him myself, then it's my burden to bear him, because no child asks to be bom, and unfortunately. 86

not just the autistic children suffer, but healthy children also. At least I have the privilege of having a child who feels confortable with me." "Yo digo si yo lo busque yo misma me lo aguanto todo porque ningun nino pide venir al mundo y desgraciadamente no solo los ninos autistas sufren sino ninos sanos tambien, por lo menos tengo el privilegio que es un nino que esta bien conmigo. "

Person's father: "He was born sick, it's not his fault he was born this way. It's not anybody's fault" "El nacio enfermo y el no tiene la culpa de haber nacido asi, no es culpa de nadie."

There is also a feeling of resignation:

Gregorio's mother: "Well, yes, that's my only choice. I have to accept it [the autism], because I'm his mother, and if I don't help him, certainly no one else will do it, no one else will be able to raise him.... Because if I'm not there the moment that I have to be, nobody else will be with him either. " "Bueno, si ya esta eso que mas me queda, lo tengo que aceptar porque yo soy la madre y si yo no lo ayudo nadie me lo va ayudar, a poderlo educar... porque si yo no estoy en el momento que me toque estar, nadie va a estar con el. "

Jesus' father: "So then as a parent, yes, I regret that he's like this because [of course] I would like him to be like his twin brother. But really. I'm not bitter about it. I know there are some parents who will start to swear because of their kid's condition, or they start to say things they shouldn't say about their own kid." "Entonces como padre si siento que es la enfermedad de el porque yo quisiera que el fuera como el otro [hermano gemelo] pero en realidad no me da tanto rencor ni remordimiento de que el sea asi. Si, porque hay padres que a veces empiezan a maldecir por lo que tiene el nino o empiezan a decir cosas que no estan supuestas a decir. " 8 7

SUMMARY

Chapter IV "Wiy me?" brings us the initial impact that parents experience

when they find out that they have a child with autism. Parents provided us

their refection of the journey to the world of autism. This initial impact is

classified into five categories that describe parent's experiences. The parents'

own words were used to describe each category. These are: "He used to play by

himself, "Why is God punishing us?, " "That was horrible, " "It is a cerebral

deficiency, " and "It is difficult to accept. "

"He used to play by himself" involves the initial "awareness" of the

problem, how they noticed that their child was different. Parents experiences

were diverse; some learned of the disability through friends, baby-sitters or

because of the child's behaviors. Parents noticed behaviors in their children that

were "odd," including being in a world of their own, not responding to others,

lack of interest in playing with other children, playing with toys inappropriately, not acknowledging the presence of other people, and speech disturbances.

"Why is God punishing us?" represents the cultural explanation of why their children became autistic. Parents describe their worldview and own explanation of why this happened to them. Explanations of why autism occurred include negative thoughts during pregnancy, problems during labor and at birth. 88

nervous tic, punishment by God because they did something wrong, depression

during pregnancy, rejection of pregnancy (unwanted pregnancy), fever during

childhood, blood type and chromosomal problems. Explanations are

contextual and linked to cultural beliefs such as religious views and theories of

causation. These theories of causation were culmral, religious, biological and

genetic.

"That was horrible " represents how parents felt when they found out that

their child had childhood autism. Parents mentioned that they experienced

feelings such as denial, doubt, sorrow and guilt. They also describe their feelings

about "losing the perfect child" and how parents reacted to realizing that their

child had autism. Most mothers reported feeling depressed when they received

their child's diagnosis. In this section mothers talk about their experiences as

mothers of children who are different and how having a child with autism was

experienced within the family context. Mothers described their doubt of their

parenting skills, that marital difficulties arose and that their husbands had

difficulties in understanding the child's condition. Children with autism look

normal, making it difficult for parents to cope with the manifestation of odd behaviors. 89

"It is a cerebral deficiency " represents the construction of the definition

of autism from a parent's perspective. Their definition includes; a form of

mental retardation with many variations, an illness that affects the child's

capacity to develop socially and emotionally, it is caused because of the family's blood type and racial mixing, it is because of a deficiency in the brain function and also it is something difficult to understand.

The last category in this chapter is "It is dijficult to accept, " a self-explanatory sub-heading. Parents speak of their experiences in dealing with autism and how difficult it is to accept. Some parents, despite having had their child's diagnosis for some years, still find it difficult to accept. Progress that their children make is also an issue. Some parents view autism as a disability that is known as "static" and when their children progresses, they wonder if the diagnosis was correct. On the other hand, not accepting the disability does not mean that they are not accepting their children. Parents make this distinction between disability and their children. Parents discuss their feelings and difficulties in accepting the disability, its behaviors and the future. Feelings of resignation help parents to accept the disability as a reality in their lives. CHAPTER V

HOW AUTISM HAS CHANGED OUR LIVES

"Tener m nino asi afecta la relacion de los hermanos, la relacion de la madre del nino.. "Pienso que la responsabilidad es mayor en el momento en que tu sabes que tienes un nino en estas condiciones... " (Gerson's father).

Translation: "To have a child like that affects the siblings' relationship, the relationship between the child and the mother... I think that the responsibility is greater the moment that you realize that you have a child with such a condition. "

INTRODUCTION Parents discussed their perception's from noticing their child's disability to forming their own definition of what autism is. In this chapter parents discussed how autism has changed their life. Both mothers and fathers discuss how autism has affected them as individuals, as members of a family, and as marital partners and as social beings. Parents also talk about their perceptions of how siblings might be affected. They reflect on the past, before the arrival of their child with autism, during the transitional stage of knowing that their child

90 91 had autism, and currently living with a child with autism.

"My life changed completely"

Parents reflect on how life was different before and how different it is now: Person's mother: "It doesn't matter what one intends to do with one's life, because it's going to be different, because I could sum it up, as for me life is divided into before him and after him." "No importa lo que uno intente en la vida porque va a ser diferente porque yo podria resumir, para mi la vida es antes de el y despues de el."

Maria's mother: "It was different [before] because when I had the other two kids who were normal, we went out to eat, we went to the park, we went to the park, we went fishing, to play ball... I worked, I earned my money, I had my own interests. I paid attention to the kids, but I wasn't chained to them. Each of us had our own lives. " "Era diferente [antes] porque cuando yo tenia los otros dos ninos que eran normales nos ibamos a comer a la calle, los sacabamos al parque y los llevabamos a pescar, a jugar pelota...Yo trabajaba, ganaba mi dinero, hacia mis desenvolvimientos y yo estaba pendiente de ellos [normal kids] pero no estaba sometida a ellos cada uno tenia el curso de su vida. "

Person's mother: "The problems of other kids growing up aren't the same. When my kids were small, I dedicated all my time to them. I could pay attention to all of them at the same time when they were small, but now all of them are grown, and Person still has a low IQ, it's like still taking care of a small child, every day it gets harder, it doesn't matter whether he's improved." "Los demas problemas de los chicos que van creciendo no es lo mismo, cuando mis hijos eran pequenos, que les dedicaba el tiempo a todos como pequenos ... los podia cuidar a todos como pequenos pero ahora todos estan grandes y Person signe con un IQ bajo, es seguir cuidando un nino pequeno, cada dia se te hace mas dificil no importa lo poquito que ha mejorado". 92

Some parents comment about how autism has changed their lives, economically, physically, socially, and psychologically. Many aspects of their lives have changed drastically, and everyday chores revolve around the child: Person's mother: "What happens to me with this kid is that without wanting it to happen, I feel like my life is atrophying, it atrophies in such a way, and it's not that I'm blaming him, because it's not his fault, nor is it that I get angry with him, totally the opposite. " "Lo que me pasa con el nino es que sin el quererlo atrofia la vida de uno, la atrofia de una manera y no es que lo este culpando porque el no tiene culpa ni es que tenga coraje con el nino todo lo contrario."

Mario's mother: "Tremendous, because when he got sick, I had no life of my own, I had to stop working, so the economic situation isn't the same [as before], goverment aid isn't enough when one is working, so this completely rearranged my life, in terms of credit, things for the house ... I understand that I can't return to work and I have to economize, I can't go out and have a good time because I can't leave him with anyone. If I want to go to a party, to a movie, I have to go where I can take him with me, and be limited to his behavior. When he begins to misbehave, I have to leave, I can't spend much time with my older children [his siblings] because they have younger children. " "Tremendo porque a la vez que el nino se enfermo ya yo no tengo vida propia, yo tuve que dejar de trabajar so la situacion economica no es la misma, la ayuda del gobiemo no satisface cuando uno esta trabajando so esto me interrumpe a mi para todo, para credito, para tener las cosas de la casa, yo entiendo que no puedo ir a trabajar y tengo que hacer economia, no puedo salir a distraerme porque no puedo dejarlo con nadie, si yo quiero ir a un party, a un cine, tengo que ir a donde yo lo pueda llevar a el y estar sujeta a como el se porta o cuando el empieza a portarse mal tengo que irme, no puedo tener mucha relacion con mis hijos mayores porque ellos tienen ninos pequenos."

Claudia: "You were saying that when you found out that he had problems, you quit working. Do you think your life has changed significantly?" 93

"Ud. estaba diciendo que cuando supo que tenia problemas Ud. dejo de trabajar, Ud. cree que su vida ha cambiado?". Daniel's mother: "Sure, because I couldn't work ever again, and it made me very nervous, and everything caused me grief. " "Claro, porque no he podido trabajar nunca mas y me puse muy nerviosa y todo me causaba llanto. " Person's mother: "I really think one's life revolves around them [autistic kids], because for you there is nothing other than the child, there can be nothing, he can be adorable, but the moment you see that your child is autistic, your life hangs on him, the pain, the bad temper, what he doesn't like, everything. You live inside of them. " "Yo, si creo que la vida de uno gira alrededor de ellos porque para uno no hay otra cosa que ese nino, nada puede haber, puede ser lindo pero en el momento que uno ve que el nino es autista siempre uno esta pendiente de el, el llanto, el mal humor, lo que a el no le gusta, todo. Uno vive dentro de ellos. " Mario's father: "I felt it deeply; I have cried a lot for that child... That's very hard, for my wife and myself. " "Yo me he afectado mucho porque yo he llorado mucho por ese nino... Eso es muy duro para mi, para [mi esposa] y para mi. " Jesus' mother: "What we had with Jesus and the things my husband and I have been through with him, everything affects me; then there'll be one day of the week or the month that with just a little bit of strees makes me explode [blowup]." "Lo que me ha tocado con Jesus y las cosas que hemos pasado el (husband) y yo, todo me afecta. Entonces hay un dia en la semana o en el mes que con un poquito asi hace que yo explote. " Mario's mother: "The only moments I have for myself are when he is in school, and the school is calling to tell me if he's upset or if he's sick, and I can't say that I'm going to take advantage of the time he's in school to do my own things, because they are contantly calling me, I don't even have any freedom then. " "Las unicas horitas que tengo [para mi] es cuando el esta en la escuela y la escuela, me esta llamando que si esta alterado, que si esta enfermo y no 94

puedo decir que las horas de la escuela las voy aprovechar para hacer mis cosas porque estan llamando constantemente, ya no tengo libertad".

Some parents note that having a child with autism causes them to be depressed at different states in life, including the time the diagnosis is made and then learn to live with autism.

Person's mother: "One feels various emotions while the child is growing up. There are days when you wake up and you feel like you can take on the world, and others when everything depresses you." "Uno tiene sentimientos diversos a medida que el nino va creciendo..hay dias que te levantas que quieres cambiar el mundo y hay otros que todo te causa depresion. " Claudia: "Do you think that to have a child like that causes depression?" "Ud cree que causa depression tener un nino asi?" Person's mother: "Yes. There comes a time when you become accustomed, but the first few years are terrible. Yes, it is depressing, because you don't know what you're up against, you live through many different phases. There is the stage when you bring the baby home, and like any baby, he brings happiness into the home. You think the baby is fine, and then you begin seeing strange things, and then comes the stage of exploring and investigating and not wanting to investigate because of what you might find out, and at the same time, stopping the search because deep inside you know that something is wrong, that mother's sense tells you; I don't know, a sixth sense that mothers have. You don't need a professional to tell you that something is wrong with your child, I can discover it for myself, accept it, confront it, I can find out what it is, learn to live with it. There are thousands of stages that one goes through in one way or another. They're all different emotions. " "Si. Llega un momento en que te acostumbras pero en los primeros anos era terrible. Si causa depresion porque tu no sabes con que estas bregando. Son muchas etapas que tu vives; esta la etapa que te llevas la criatura a tu casa y como cualquier nino llega la felicidad en el hogar, despues résulta que el nino esta bien y de pronto ves algo raro, despues 95

llega la etapa de investigar y de no querer investigar y al mismo tiempo acabar investigando porque muy adentro tu sabes que algo anda mal, la condicion de madre, no se un sexto senîido que uno tiene, uno no necesita ser professional para saber que algo anda mal con tu hijo. Yo puedo descubrirlo, aceptarlo, afrontarlo, yo puedo averiguar que es eso, aprender a vivir con eso, son un monton de etapas que uno va pasando de una u otra forma son diferentes sentimientos."

Sergio's mother: "There are days when I feel completely hopeless, then I get tense and I ask God for just a little strenght, and I feel more peaceful. It's difficult for a parent to have such a child." "Hay dias que me desespera, entonces me pongo muy tensa y le pido a Dios que me de un poco de fuerza, como que me tranquilizo. Es duro para un padre tener un nino asi. "

Gerson's mother: "I feel depressed. I have days when I'm a little more content, but definitive happiness is no longer part of my life. You know, I'm kind of in between. I'm not completely sad, but I'm not completely happy either. I'm like in the middle of limbo, hoping but uncertain. " "Me siento deprimida, tengo unas razones para estar un poco mas contenta pero no me nace la alegria definitivamente. Tu sabes estoy asi en un estado que ni estoy triste del todo ni estoy contenta del todo, estoy como en el medio de un limbo, como esperando, una incertidumbre."

Mario's father: "You'd would like to have your child well, and knowing that he's sick this way is very sad, and even more when you love your children. " "Uno quisiera tener su nino bien y saber que esta enfermo es muy triste y mas cuando uno quiere a sus hijos. "

Mario's mother: "Very often I feel cheated, depressed, used up [finished], I no longer get excited about anything. " "Muchas veces me siento defraudada, me siento depresiva, me siento acabada, yo ya no tengo ilusion de nada. "

Gerson's mother: "I wasn't interested in anything; the only thing that interested me was being in the house, I buried myself in the world... 96

Unconciously I was caught in a vicious cycle all the time. If he din't sleep, I didn't sleep, maybe I didn't keep up with some of my responsibilities." "No tenia interes por nada como que lo unico que me interesaba era estar en la casa, yo me meti en mi mundo... inconscientemente estaba en un circulo vicioso todo el tiempo, si el nino no dormia, yo no dormia, quizas no cumplia con algunas responsabilidades."

A mother describes her experience of struggle against depression:

Gregorio's mother: "I think that these 11 years I have battled with what he has, I have fought not to be let myself fall into a nervous depression, because I think I have turned my pain regarding what he has into what he will lose if something happens to me... One depresses oneself out of a mother's grief in seeing her son like this." "Yo creo que estos once anos he batallado con lo que el tiene y he luchado para no dejarme veneer por una depresion, por los nervios porque yo creo que yo me hecho al dolor de lo que el tiene, el que va a perder es el si algo me pasa a mi... uno mismo se causa la depresion por el dolor de madre que siente al ver a su hijo asi. "

"It dysfunctions the family" There is pain about how autism has affected the family as a unit and individually: Claudia: "It [autism] dysfunctions the family? In what sense?." Disfunciona la familia? en que sentido? Person's mother: "In every sense. I think a family with an autistic child is completely dysfunctional, it doesn't matter what kind of ties there are between the parents and other kids. For example, in my case, although my marriage hasn't been the best in the world, I think that while Person's autism was developing [beginning to manifest], well, some things were getting worse, for example, our relations, the intimacy, the time I could invest in the other kids. " "En todos los sentidos. Yo creo que una familia con un nino autista se disfunciona totalmente, no importa de como sean los lazos entre el papa y 97

la mama y los otros ninos, por ejemplo en mi caso, aunque mi matrimonio no ha sido el mejor del mundo pienso que a medida que se fue desarrollando el autismo de Gerson pues algunas cosas fueron empeorando por ejemplo nuestras relaciones, la intimidad, el tiempo que yo le podia desarrollar en los otros ninos."

Person's father: "It affects everyone mentally, not just the couple [the parents], but also the other kids...That limits everything the family can do." "Animicamente afecta a todos, no solo a la pareja, a los hijos tambien..eso limita todas las acciones de la familia"

Person's mother: "The family depends greatly on [the mood ol] the autistic child, even for vacations, for everything, I could even say our sexuality. " "La familia depende mucho del nino [como se siente] hasta para unas vacaciones, para todo, te podria decir que hasta para la sexualidad. "

Any illness within a family affects family members but autism seems to affect the family more than any other illness because of the serious behavioral difficulties an individual might have: Person's mother: "It is incredible to have a sick person in the house, it affects everyone. But I think having an autistic child affects even more, because every day I convince myself of people I know with other types of sickness, and really I think that autism is sonething very difficult [to live with], very hard, for everyone in the family in general. " "Es increible tener una persona enferma en la casa, afecta a todo el mundo, pero yo pienso que tener un nino con autismo afecta mas todavia porque cada dia me convezco mas que la gente que conozco con otro tipo de enfermedades y realmente pienso que el autismo es algo muy dificil, bien duro, duro para toda la familia en general."

A mother reflects on how autism has affected both parents equally: 98

Gerson's mother: "I think it's something that's affected both of us [mother and father] equally, because in some way this condition of our child keeps us together, despite all the problems, all the difficulties, it always keeps us together. And I think it's the boy, I think he matters as much to him [husband] as to me. " "Yo creo que es algo que nos ha afectado a los dos por igual porque de alguna manera eso nos mantiene unidos que el nino sea asi, a pesar de todos los problemas, de todas las dificultades, siempre eso nos mantiene unidos y creo que es el nino, yo creo que a el le importa tanto como a mi."

Autism has not changed the lives of other parents:

Claudia: "Do you think that what happened to Gregorio has changed yours and the family's life completely?" "Ud. cree que lo que le paso a Gregorio ha cambiado su vida y su vida familiar por completo? Gregorio's mother: "No, because I treat him like a normal kid, I don't think it has affected the family life either, because I have always liked staying home. " "No porque yo lo trato a el como un nino normal, no en la vida familiar no, siempre me ha gustado estar en mi casa. "

On the other hand, there is an ambivalence if the child with autism has made any drastic changes in the mother's life;

Claudia: "You don't think there's been a drastic change in your life?" "No cree que ha sido un cambio drastico en su vida?" Gregorio's mother: "No, well, yes and no, it will always be yes and no." "No, parte si parte no, siempre esta el si y el no." 99

Most parents have agreed on the responsibility of having an autistic child and how it has affected them. From a cultural perspective, it affects parents in terms of dealing with the culturally expected behaviors and ascribed roles: Jesus' father: "We have separated... having to deal with all three of them has hurt our relationship considerably. I don't know if it's my own upbringing; I was raised by my aunt and uncle and my bothers and sisters, and whenever someone came home from work, dinner was always ready and served for the man when he arrived. Then, of course, I wanted my wife to be the same way, and very often it bothered me because she wasn't responsible that way. " "Nosotros nos hemos separado... el tener que lidiar a los tres ha danado bastante nuestra relacion... no se si sera por mi crianza porque a mi me criaron mis tios, mis hermanos y que cuando venia una persona de trabajar la comida estaba preparada y todo servido para el hombre cuando llegaba entonces yo la queria hacer a ella a mi manera, a veces me molestaba porque ella no era responsable. "

Jesus' mother: "He would come home and even though I had already picked up the house 30 times that day, when he got home, it was always messed up again. At times I would try to explain to him without yelling, and it's very hard because I don't want to yell, and he doesn't want to hear it. That's the problem with men, they have an idea that a woman should be submissive, but I'm not submissive." "A la casa el venia y aunque yo hubiera recogido [la casa] 30 veces al dia cuando el venia estaba asi [desarreglada]..". "Si a veces yo le quiero explicar a el sin gritar y es muy dificil porque yo no quiero gritar y el no me quiere oir entonces yo para que me oiga grito porque yo soy asi ese es el problema del hombre [country] tiene una idea de lo que es una mujer sumisa, yo no soy sumisa. "

Gerson's mother: "The problem we've always had is that he has always worked nights, and besides that, the responsibility of taking care of the kid [Gerson] separate us. For example, he [the father] doesn't have the patience to spend all day here with the boy; if he's quiet then no problem. 100

but of course, very often he's not 'normal' and quiet, and then he [the father] doesn't have the patience to deal with him like I do. It's not that he beat him or anything, or treats him bad, but he doesn't know the little tricks I do to calm him down. Even when I'm drop-dead tired, like I could just pass out, I always look for a way to calm him down, or at least, I don't give up. My husband reaches a point of such complete lustration that he loses it, and he can't deal with him any more. " "El problema que hemos tenido es que el siempre ha trabajado de noche y nos separo tambien la responsabilidad del nino porque por ejemplo el no tiene mucha paciencia para estar todo el dia aqui con el nino, si el nino esta tranquilo si, pero si el no tiene mucha paciencia para estar todo el dia aqui con el nino, si el nino esta tranquilo si, pero s5 el nino se sale de lo que es normal para el, pues el no tiene mucha paciencia como yo, no es que le pege ni que lo trate mal pero no sabe usar los mecanismos que yo conozco para tranquilizarlo, yo aunque sienta que el corazon se me sale que me voy a desmayar siempre busco algo que hacer, o sea que no me rindo, el [esposo] llega un momento que se frustra tanto que se desespera. "

"It has affected our marital relationship"

The effects of autism on marital life is expressed; Claudia: "Do you think it's affected your marriage?" "Ud. cree que ha afectado su vida matrimonial?" Jesus' father: "Sure, I think it's affected it at least a little bit, because every night when I get home from work, she tells me she's tired... and sometimes I come home tired too, and with the energy she does have, sometimes we argue." "Yo creo que si afecta un poco porque siempre que yo vengo de trabajar, ella me dice que esta cansada... y a veces yo vengo cansado tambien y con esa energia que tiene, a veces ella y yo discutimos."

Jesus' mother: "What happens with me, what with having to deal with Jesus and the things that go on between him and me, everything just builds up inside me, and then comes a day in the week or the month when I'm so stressed, it doesn't take much at all to make me explode." 101

"Lo que me ha tocado con Jesus y las cosas que hemos pasado el (husband) y yo todo me afecta entonces hay un dia en la semana o en el mes que con un poquito asi hace que yo explote. "

Daniel's mother: "Then he started to drink, more over with our son's problem, and I said, honey, instead of doing that, what you need to do is help me take care of our kid and well, that's when all the problems started, until finally he left me to deal with it all by myself, and then came the separation. " "Ahi se dedico a tomar [husband], se dedico a tomar, mas con el problema del nino y cuando yo le decia viejo en vez de tu dedicarte a tomar tu lo que debes hacer es ayudarme a sacar el nino adelante y bueno vinieron los problemas hasta que ultimamente el me dejo sola con el problema practicamente y vino la separacion. "

Claudia: "And your marriage also?" "Y su vida matrimonial tambien?" Gerson's mother: "It was horrible. It's never been perfect, but I think that after he was bom, it got even worse because I was always nervous, I was resentful of my husband. It's normal for a person to react that way [to such circumstances] and not be interested in sex. " "Malisima porque nunca fue buena del todo, pero siento que despues del nino empeoro porque yo siempre estaba nerviosa, estaba resentida con mi esposo, es normal que una persona reaccione asi y no tenga apetito sexual."

Mario's mother: "We're always upset, because he always piles everything up on me, he always blames me for everything that happens, if the kid starts yelling. " "Siempre estamos alterados porque el todo me lo hecha encima, como que me culpa de todo lo que pasa, si el nino grita. "

Claudia: "Do you think that Mario's problem has affected your marital life?" "Ud. cree que el problema de Mario ha afectado su vida matrimonial?" 102

Mario’s father: "No, it is all the same to me. We have been married for 31 years; when one gets old one argues a lot." "No, para mi es lo mismo, tengo 31 anos de casado.. uno cuando esta viejo se pone medio pelion. "

Claudia: "And has your marital life has changed?" "Y su vida matrimonial ha cambiado?" Mario's mother: "No, that's already over, as a couple. We live together, but we don't live together, if you know what I mean. We sleep in separate beds. I'm basically chained to the boy, I can't have a love life. In fact just the opposite, everything bothers me, everything upsets me." "No, ya eso se acabo, ya matrimonialmente nosotros convivimos pero no vivimos, no se si tu me entiendes, el tiene su cama y yo tengo mi cama, yo tengo que estar pendiente del nino, yo ya no estoy para vida sentimental, al contrario todo me molesta, todo me altera. " How to parent a child is also an issue among parents. Some have found that

differences of opinion on this subject have caused difficulties in their

relationship: Jesus' mother: "I think it has greatly affected our relationship, because he [father] has different opinions on how to handle the boy. We argue because he wants to punish him the same as the other kids, and I tell him, you can't do that, so then he goes and blows up. I want to discipline him one way, and his father, another." "Yo creo que ha afectado mucho nuestra relacion porque el [papa] tiene un punto de vista diferente a mi sobre el nino, discutimos porque el quiere castigar al nino igual que los otros ninos entonces yo le digo que no se puede, entonces el (father) lo deja y explota.. ". Yo quiero corregir al nino de una manera y el de otra. " Also when a separation occurs, autism affects the separation in the sense that parents sometimes remain closer because of the disability: 103

Gerson's mother: "Maybe we've managed to be better than at the beginning of our separation, when there was a lot of, I don't know, anger, maybe partly because he was unwilling to see things as they are, he confused things in the sense that I always tried to tell him that it didn't matter to me if we separated, if he wanted to leave or if he had another woman. We can't have a normal marriage like other couples, where we just breake up completely and he deals with the kids and that's it. Unfortunately, the kid's [Gerson's] problem affects us in that sense. I need my husband more than any other person, especially regarding the boy, because, for example, if the kid [Gerson] "goes crazy" at night, I don't want to call a mobile unit (mobile psychiatric unit) to come to the house. I'd rather call my husband at work and ask him to come home. " "Quizas hemos conseguido estar mejor que al principio de la separacion que habia mucho, no se, coraje, quizas de parte de el estaba muy renuente a ver las cosas como son, confundia las cosas en el sentido de que siempre yo he tratado de decide que no importa que nos separemos, no importa que el se quiera ir o que tenga otra pareja. No podemos ser un matrimonio normal que rompe del todo y simplemente briega con los chicos y no mas, a nosotros desgraciadamente el nino [Gerson] nos afecta en este sentido. Lo necesito [husband] mas que a otra persona sobre todo en el aspecto del nino porque por ejemplo si el nino se pone muy majadero de noche, yo no estoy de acuerdo con llamar a una clinica de esas que se mueven (mobile psychiatric unit) de psiquiatria que te vienen a la casa, yo preferia llamarlo al trabajo que el venga. "

Autism is also what makes them different from other parents:

Gerson's mother: "I think that more than anything, the most important thing about this problem we have [Gerson'a autism] is the child, and I definitely believe that our life is different from other families. It doesn't matter what we want out of life, ours is always going to be different. I could sum it up by saying that for me, my life is divided into before him [his birth] and after him. " "Yo pienso que por encima de todo, del problema [el autismo de Gerson] que tengamos nosotros, lo mas importante es el nino y definitivamente yo creo que la vida de uno es diferente a la de la otra gente, no importa que uno intente en la vida, siempre va a ser diferente, yo podria resumir que para mi la vida es antes de el y despues de el. " 104

Gerson's mother: "Before we separated, probably the last five years were the worst ... and even at that, you can see how an autistic child affects things. I think my husband could have been a very good father to our other children if Gerson hadn't come along, and we could have separated very easily, completely severing the relationship with no problems, it could have ended very normally and each of us could have begun our own different lives. But instead this boy keeps us connected like an umbilical cord." "Antes de la separacion quizas los ultimo 5 anos ban sido bastante malos.. y hasta en eso tu vez como afecta un nino autista porque yo creo que mi esposo podra cumplir como un buen padre de los otros ninos si Gerson no fuera asi y nosotros habernos desprendido totalmente cortando la relacion sanamente ... lo que se pudo haber acabado normalmente y cada uno haber empezado un tipo de vida distinta, nos mantiene hay pegados como un cordon umbilical y todo principalmente por el nino. " On the other hand, marital problems and separation have been attributed to other problems within the marriage but not to autism. Autism is accepted as something that occurred and problems in the marriage do not have anything to do with the disability per se: Claudia: "Do you think that autism has affected your marital life?" "Ud. cree que eso [autismo] ha afectado la vida matrimonial?" Gerson's father: "We're separated now, but no, there were other things, and my fault too, but personally I don't think they were because of the child. Maybe through my own fault, but not because of him ... Maybe she [my wife] thinks so, but I don't. But we have the same relationship which is the family, and it would have to be an inhuman person who would think our problems were because of my son, because he was born with this sickness. No, it's not his fault that he is like that, it's not anyone's fault. And one thing [autism] has absolutely nothing to do with the other [the separation]. We've had other types of problems worse than his illness." "Actualmente estamos separados, pero no, fueron otras cosas y mi culpa tambien pero personalmente no creo que fue lo del nino. Quizas por 105

culpa mia, pero del nino no... quizas ella pensara qua si pero yo pienso que no. Pero tenemos la misma relacion de la familia solamente que fuera una persona desnaturalizada que piense que los problemas de ella y yo hubieran sido por el nino o por que el nacio enfermo, si el no tiene la culpa de haber sido asi si no es culpa de nadie, eso absolutamente no tiene que ver una cosa con la otra... Hemos tenido otra clase de problemas mas dificiles que eso de la enfermedad del nino." But different points of views about whether autism has influenced in their separation is latent for this family

Gerson's mother: "I said now, after the third child, I am going to use birth control and I'm going to go back to work, but in less than a year, I realized what was wrong with Gerson and from then on my life changed, but the routine stayed the same for my husband. He cooperated, but I changed from a sweet, loving person into a very withdrawn person, frigid even. But I know that somehow my son affected me also, because I became very sad whenever I thought about his problem, too nervous, I didn't sleep, I tried to escape by eating and pacing at night without sleeping. If he didn't sleep, I didn't sleep. " "Yo dije ahora despues del tercero [Gerson was the third child] me voy a cuidar [birth control] y me voy a trabajar pero al ano yo me di cuenta lo que pasaba con Gerson y ahi cambio mi vida pero la rutina siguo igual para el [husband]... el cooperaba pero de una persona dulce me volvi una persona retraida con el, frigida quizas" ... Pero yo se de que alguna manera el nino tambien afecta porque yo me puse demasiado triste con lo del nino, demasiado nerviosa, no dormia, trataba de escaparme comiendo y rotando las noches sin dormir, si el nino no dormia yo no dormia. " Fathers talk about whether their role in the family has changed as a result of the situation: Gerson's father: "Yes, it's logical that a family will change, it has to be affected by such a problem, in this case, an autistic child has to affect the relationship of brothers, the relationship of the mother and child... I think the responsibility is greater at the moment when you realize that you have a child with such a condition... because it's more of a chore to care for 106

such kids, it's not the same as having a normal child who can take care of himself. " "Si cambia logico, cuando tu ves que la familia se afecta por un problema en este caso un problema de tener un nino asi afecta la relacion de los hermanos, la relacion de la madre del nino..". "Pienso que la responsabilidad es mayor en el momento en que tu sabes que tienes un nino en estas condiciones... porque el cuidado de los ninos es mayor, no es igual que tener un nino normal que se defiende por si solo. "

Gerson's father: "I've changed a bit, such a situation is bound to make you change, especially if you know how things are, and I know how hard it is for her. " "Yo he cambiado bastante, la misma situacion te hace cambiar y sobre todo si uno es consciente de las cosas y yo se lo duro que ella pasa. " Having a child with autism might influence the decision of having more children.

A dialogue between this family describes their reality: Jesus' father: "You know how it affects you? We have three kids, okay, that's enough, sometimes you try to plan a family and all that, but you expect to raise your kids and say. I'm going to start a new career, but she [the wife] has always said she would like to have one more son or daughter, but I've always had this fear." "Tu sabes en que forma lo afecta a uno?, tenemos tres ninos, ok es suficiente, a veces uno hace el plan ya uno con familia y todo eso pero uno esta esperando criar sus hijos y decir voy a empezar una carrera, ella siempre me ha dicho que quiere tener un nino o una nina mas pero yo siempre he tenido esa cosa. " Jesus’ mother: "Are you afraid that it would be autistic [too]?" "Tu tienes miedo? que te saiga autista Jesus' father: "Yeah, that it will come out the same way, you always have that fear. " "Si que te pueda salir afectado, siempre he tenido ese temor." Jesus' mother: "You never told me that. " "Tu nunca me habias dicho eso." 107

Jesus' father: "I didn't want to offend you, because a person always has some things one keeps hidden something that may be can be reject it for life." "No, son cosas por no ofenderte porque uno siempre se réserva algo que pueda haber un desprecio para toda la vida. " Jesus' mother: "Sometimes I say to him, oh, how sweet it would be to have another little girl, but sometimes I also say so what if it would be sweet, but I've never thought another baby would be autistic, or it could be that I don't believe that idea, and sometimes I say, could there be any chance that it would happen again?" "A veces yo le digo ay que bonito seria otra nina, pero tambien a veces digo, caramba, si es bonito, pero nunca he pensado que me va a salir autista o sera que yo no creo en esa idea, y a veces digo habra algun chance?" Jesus' mother: "Well, what happens is that at the beginning you accepted Jesus' problem and told yourself that it's normal. " "Bueno, lo que pasa es que al principio con lo de Jesus tu lo aceptaste y dijiste that's it is normal." However, the birth of a new child might bring expectations and fears that the new child might also be affected: Gerson's mother: "A new baby is like a new hope, it's something that for a moment it takes your mind off of what was happening at that time with the boy, because having a new baby in the house brings a bit of joy, but at the same time, it makes a whole lot more work for you, in keeping the boy [Gerson] away from the girl because the boy has a very low IQ." "Un baby nuevo es como una nueva esperanza, es algo que momentaneamente nos saco un poco de lo que estaba sucediendo en aquel momento con el nino porque un nuevo baby en la casa te trae un poco de alegria pero al mismo tiempo te créa contratiempos de cuidar la nina del nino porque el nino tiene un IQ muy bajo. "

Claudia: "Do you think things changed when you had your baby girl [non autistic]?" 108

"Ud. cree que las cosas cambiaron cuando Ud. tuvo la nina [sin autistismo]?" Sergio's molheii "Yes, especially for me and for Sergio [the autistic child], and because I've been a single parent with him, the dream of working, now that I've had her, everything's changed for me, especially since I've seen that she's a normal kid, what God didn't give me in my son. " "Si, sobre todo para mi y para el [nino autista] y porque yo he sido una persona sola [single parent] con el nino, la ilusion del trabajo, ahora que yo tuve la nina para mi todo ha cambiado, sobre todo que he visto que es una ninn normal, lo que Dios no me dio en el nino. " "It is a 24-hour-a-day job"

Autism affects the entire family and can be traumatic; it limits the family from

social activities and some aspects of gender roles can be more pronounced. For instance, mothers in this study talk about how their role as caretakers became a role of 24-hour-a-day: Gerson's father: "In theory, it was much easier than today, and in fact, I recognize all the work my wife does, because essentially she's the one who's fought with this, not me. She's been the one who has taken care of our son, and it's very traumatic in every aspect, with the rest of the family, the other siblings see their brother so limited in his abilities, but they've become accustomed to it all." "En un principio fue muy facil que hoy y de hecho yo reconozco la labor de mi esposa porque practicamente ella ha sido la que ha lidiado con esto, yo no. Ella ha sido la que se ha encargado del nino y es muy traumatico en todos los aspectos, con el resto de la familia, con los hermanos, ellos ven a su hermano muy limitado pero se van acostumbrando a todo. "

Jesus' mother: "It's the hardest work anyone can have, for me it's incredible, it's exhausting, you have to be incredibly patient. It is exhausting because you have to be tied to him 24 hours a day. It's hard because you always have to be at his beck and call. " 109

"Es la tarea mas fiierte que le pueden dar a uno para mi es fiiertisimo, es agotador, hay que tener paciencia. " "Es agotador porque hay que estar pendiente de el 24 horas al dia ... Es dificil porque hay que estar pendiente de todo. "

Sergio's mother: "He's a kid you have to spend 24 hours a day watching, because he can pick up and drink out of any bottle, of medicine or whatever. He doesn't know the danger, so you have to watch him constantly. " "El es un nino que hay que estar 24 horas mirandolo porque cualquier frasco o medicamento puede tomarselo, como no conoce el peligro, o sea, que hay que estar constantemente mirandolo."

Dealing with some autistic behaviors such as hyperactivity, and obliviousness to of danger, can also affect parent and mixed emotions surface:

Jesus' father: "Sometimes she's [the wife] tired, sore from all the daily commotion, because the boy is miming here, painting there, breaking elsewhere. " "Ella [mama] a veces se siente cansada, adolorida por el diario trajin porque el nino esta corriendo aqui, pintando alia, quebrando alia. "

Gerson's mother: "He [the child] can go days without sleeping, he gets aggressive, and then you feel different emotions: pain, anger, rage; in those moments, sometimes I could have easily told him, I could put him someplace, on the moon, anywhere, just because my body can't take any more. But then on the other hand, the next day he'll take his medicine or spend days without sleeping and get up the next day like a baby, walking all over the house, smiling, hugging me. He doesn't kiss me but he taps my mouth or makes me kiss him, and then I forget everything. " "Pasa dias que no duerme [nino autista], se pone agresivo y ahi tu expérimentas diferentes sentimientos; de pena, de coraje, de rabia, en esos momentos yo hubiera tenido la posibilidad de decirlo, lo pongo en un lugar, lo pongo en la luna, lo pongo porque ya mi cuerpo no da mas, pero en cambio al otro dia toma la medicina o pasa unos dias sin dormir y se levanta al otro dia como un baby caminando por la casa, sonriente. 110

abrazandome. El no me besa pero me pega la boca o hace que yo lo bese y ya se me olvida todo. "

When the individual with autism has serious behavioral difficulties it impacts household chores and the way family members feel: Gerson's mother: "He doesn't realize how strong he is, he can attack anyone. My house is small and I'm a clean, careful person, and I didn't have the desire to buy curtains or anything. I cleaned because it was something I couldn't do, but I didn't have the desire to but a curtain, there were holes in the walls, I hired someone to fix them, and he turned around and did it again, he broke them. I was in a situation there, and with all that I still kept going. Now from then on, in the last four months my son has been relatively quiet. I've gone ahead and painted. I've arranged things, or rather. I'm feeling more lively, everything depends so much on his mood, my moods depend on his, and so do those of the rest of the family." "El no sabe medir su fuerza, puede atacar a cualquiera, mi casa es pequena, yo soy una persona cuidadosa, limpia y no tenia el amor de comprar una cortina ni nada, limpiaba porque era una cosa que no podia dejar de hacerlo pero no tenia el amor de comprar una cortina ni nada, en las paredes eran huecos, los mandaba arreglar y volvia a hacer lo mismo, los rompia. Yo estaba en una situacion ahi y con todo eso me mantuve. Ahora por ahi en los ultimos cuatro meses el nino esta bastante tranquilo, me he animado a pintar, he pintado, he arreglado o sea como que me ha llegado un poquito de vida, depende mucho del estado de animo del nino, el estado de animo mio depende mucho de el de el y consecuentemente el del resto de la familia. " The size of the individual with autism who is having behavioral problems can also play a role in how parents feel: Gerson's father: "It's very hard for the parents... He's too strong, and that makes it more difficult... He is very heavy, and too big, no one can control him. He gets in a rage in the house, he's destroyed the house, there were holes everywhere... All of this affects everyone psychologically, not just the parents, but the other children as well." I l l

"Para los padres es durisimo.. el es demasiado fuerte para controlarlo porque el es muy dificil... este esta con sobre peso y es demasiado grande, nadie lo puede controlar, coge esas rabietas por la casa.. la casa la ha desbaratado, eran huecos por todos lados.. todo eso animicamente afecta a todos no solo a la pareja sino a los hijos tambien. "

Gerson's mother: "Having such a child means total chaos, at least in my case. Having such a child is like having a small elephant in the house because he's very big, and you don't have the luxury of having a large house with a lot of space, which would be a great help. " "Es un caos total un nino asi, por lo menos en el caso mio, un nino asi es como soltar un pequeno elefantico en una casa porque es grande [Gerson], tu no tienes las comodidades de una casa grande, un espacio, seria algo que ayudaria mucho."

Gerson's father: "It limits you in every sense, it's very difficult, at least now he's quieter, and in the house you can feel a different atmosphere than before. " "Bn todo sentido limita, es muy dificil, por lo menos ahora esta mas tranquilo y en la casa se vive un clima mas diferente ahora. "

A parent expresses how autism has frustated the dream of the immigrant to come to this country and be successful: Gerson's mother: "It's difficult, especially when one has come [to this country] with dreams of doing great things, and then completely confined to the house for such a reason as this. I think it's valid, because at least I don't feel totally frustated that I haven't been able to do the things I dreamed of doing because of my child. Rather, my frustration has been that the family hasn't been able to develop as they might have otherwise, and as a person, I couldn't grow as I might have; and although it's a valid reason [the autism], at the same time it's very sad because you always have the expectation that nothing is going to get any better, regardless of whatever medicines he might take, regardless of anything. " "Es dificil sobre todo cuando uno ha llegado con el deseo de hacer cosas y se queda en la casa totalmente por una razon como esta porque creo que 112

es valida porque por lo menos yo no me siento fustrada totalmente por no haber hecho cosas por el por el nino, mi fiistracion mas bien es de que la familia no se ha podido desarrollar como se pudo haber desarrollado y yo como persona no pude crecer como hubiera podido crecer y aunque es valida la razon, al mismo tiempo es bien triste porque tu siempre tienes la expectativa de que nada va a mejorar, no importa los medicamentos no importa nada. "

"She [mother] has no independence"

Mothers reported feeling alone with the responsibility: Mario's mother: "The problem is that he's very attached to me, so then the only one he understands and will listen to is me. He doesn't understand anyone else." "El problema es que el esta muy pegado a mi, entonces el lo unico que entiende y lo puede manejar soy yo. El no entiende mas nadie. "

Jesus' mother: "I am here all day long with the kids, going here and there, and I tell him [my husband] that I want to rest... but I can't, it's impossible." "Yo estoy aqui todo el dia entero con los ninos de aqui para alia y le digo a [mi esposo] que yo quiero estar tranquila.. pero no se puede, eso es imposible."

Gerson's father: "It is much too heavy a load for her. " "La carga para ella [wife] es demasiado grande. "

Claudia: "Who do you think that the child's responsibility falls on?" "Ud. cree que la responsabilidad sobre el nino sobre quien recae?" Daniel's mother: "Everything falls on the mother, well, on both parents, but if you don't have the support, well then, it's all on you. " "Sobre todo en la madre, bueno en los dos padres pero si uno no tiene el apoyo pues tiene que ser la madre. " 113

Mothers lose their freedom as individuals:

Mario's mother: "At least for me, I'm his slave, because I have to check on him every minute, I can't have any privacy, or independence, I can't go out or anything. I have to be completely on top of him. I can't even do housework, because if I'm busy with something over there, he's getting into something else over there. " "Por lo menos para mi me tiene de esclava porque hay que chequiarlo minuto a minuto, no puedo ni tener privacidad, ni independencia, ni salir ni nada, tengo que estar completamente arriba de el, ni siquiera para trabajar las cosas de la casa porque si me entretengo en una cosa el esta haciendo algo por ahi. "

Mario's mother: "My life is nothing, it's completely empty." "Mi vida esta en nada, mi vida es nula, nula. "

Gerson's mother: "I feel like I'm not free, I feel like the boy takes away my freedom, and it's my decision to let him do it." "Siento que no soy libre... siento que el nino me quita la libertad y que es decision mia dejar que me la quite. "

Happiness is yet another issue; when the child with autism becomes their responsibility, the mother's life satisfaction may be tentative:

Gerson's mother: "I think I'm never going to be happy... What I regret is that I'll never be content, never feel an ongoing sense of contentment. I have to find it at odd moments when I can, but it's something that's always on my mind. " "Pienso que nunca voy a estar feliz... Lo que siento es que nunca voy a estar contenta, nunca voy a estar mas contenta en la vida, voy a estar contenta momentaneamente pero eso es algo que voy a tener todo el tiempo en la cabeza. " 114

Living a "normal life" becomes almost impossible for some mothers when the

responsibility becomes hers: Gerson's mother: "I'm not content because I think I'm a woman who can't even fall in love if I want to, because of my son's condition. I know there are other women who could do it... I'm not saying my son is a burden, but it is very difficult to raise such a child and have the responsibilities I have. My other kids can't take them on, because they're too young, my husband rejects it [the responsibility] to a degree, I don't think I could find anyone to share it with, who would have the sensitivity to share this kind of problem. Then I think that the possibility of having a relationship someday with someone is an ephemeral dream, a hope without a future. " "Yo no estoy contenta porque pienso que soy una mujer que por el trauma del nino si yo quisiera enamorarme no podria, yo se que hay otras que han podido.. no digo que mi hijo es una carga, pero es lo dificil de criar un nino asi y tener las responsabilidades, mis hijos no podrian porque son menores, mi marido hasta cierto punto rehuye las cosas, yo pienso que no podria encontrar a nadie con quien pudiera compartir, que tuviera sensibilidad para compartir un problema conmigo como el que yo tengo con mi hijo, entonces pienso que de tener una relacion algun dia con alguien tendria que ser una cosa efimera, sin fiituro. "

The pain that a mother feels is difficult to compare with any other pain:

Gregorio's mother: "But a mother's pain is very different from that felt by the siblings, by the rest of the family, by anyone. No one can feel what is there between a mother and child. " "Pero el dolor de la madre es muy diferente al de los hermanos, al de la familia, a todos a todo lo que es entre la madre y el hijo. "

Gregorio's mother: "It is a mother's pain that she carries inside her and no one can take it away. " "Es un dolor de madre que uno lleva adentro y que nadie se lo quita. " 115

They reflect on their lives, their struggle of dealing with the autistic behaviors

and at the same time loving the child with autism: Gerson's mother: "I feel like it's not normal to protect them so much, sometimes I think that protecting him and loving him so much, and not having anyone else close who can relieve you, who can help you, who remembers that you are also a person, that you have the right to a break now and then... but not to have such a person makes things even worse. " "Siento que no es normal protegerlos tanto, a veces pienso que protegerlo y quererlo tanto al no tener alguien cerca que te releve, que te ayude, que te recuerde que tu tambien eres una persona, que tienes derecho a un ratito... pero al no tenerlo hace que la cosa sea peor."

Even personal careers are frustated by the motions and the time spent in dealing

with disability versus feeling love towards the child: Gerson's mother: "There are many conflicting emotions. I say the time I've lost isn't important; and I say lost because I haven't studied or worked [outside the home], but there are times when you feel frustated and when you blame him in some way for not having been able to do certain things, but of course, love conquers all, and never in my life will I regret having stayed at home with my child. I'll never regret it." "Son muchos sentimientos contradictorios, yo digo no importa el tiempo que he perdido, digo perdido porque no he estudiado o trabajado, pero hay momentos en que uno se siente frustrado y que uno culpa de cierta manera que por el no has podido hacer ciertas cosas pero por supuesto, el amor esta primero y nunca en la vida me voy a arrepentir de haberme quedado con mi hijo en la casa, nunca me voy a arrepentir. "

But good experiences come from sacrifice.

Gerson's mother: "I have more patience with him, because I've learned little by little. I've grown with him, it's a growing process day by day, a spiritual, emotional connection...He knows he has everything with me, that I'm his protection. He can't understand or assimilate, he simply reacts, and that's enough for me." 116

"Yo le tengo mas paciencia porque he aprendido poco a poco, he ido creciendo con el, es un crecer dia a dia, una coneccion emocional, espiritual... El sabe que conmigo tiene todo, que su proteccion soy yo, el no lo puede entender ni asimilar simplemente reacciona y eso es suficiente para mi."

Culturally, children are the mother's responsibility in terms of care and discipline. But a disability demands the mother's sacrifice, other members of the family can move on except the mother, who has the sole responsibility;

Gerson's mother: "I know I shouldn't feel guilty... I know all that, but even so, I don't know if it's something personal or cultural, I can't deal with it. Or rather, in my case, I have preferred to sacrifice certain of my wants, a certain amount of time that I can give to the kids. I've preferred to sacrifice a little. For example, not taking vacations and choosing to weave all the threads of my life around my son, and you know what makes me think that? I think that way not just because of my love for my son, I think that the more the other kids can accept his problem, the more they will grow, they have the opportunity to do things, and the time to learn to be independent. It doesn't matter how much he is affected, but they have an opportunity in life, and it will be something I don't have to worry about, because I know they will grow, they will mature, while Gerson will always be the way he is now. And although maybe Gerson is the last to thank me because he doesn't understand, I know that over time the other kids will forgive me, because I don't think they are the least bitter about it, at least they will understand me better. " "Yo se que no hay que sentirse culpable..se todo eso pero sin embargo no se si es algo personal o algo cultural, no lo puedo afrontar. O sea he preferido en mi caso sacrificar ciertas cosas mias y cierto tiempo que le puedo dar a los ninos, he preferido sacrificar un poquito como por ejemplo lo que es irse de vacaciones y mover todos los hilos de mi vida al rededor de mi hijo y tu sabes que me hace pensar eso? me hace pensar eso no solo el amor que le tengo al nino, pienso que los ninos por mas de que acepten el problema de mi hijo, pineso que ellos van a crecer, tienen oportunidad de hacer cosas y el tiempo de independizarse. No importa 117

cuanto lo haya afectado pero tienen una oportunidad en la vida y va a ser algo en lo que yo no me voy a preocupar porque se que van a crecer, van a madurar, mientras que Gerson siempre va a ser igual y aunque quizas, Gerson es el menos que me lo puede agradecer porque no lo entiende, yo se que a la larga los otros hijos me van a perdonar, porque yo no creo que ellos tengan algun rencor, por lo menos me van a comprender mejor. "

Mario's father: "At least she has to be with him, then I go out, and she's the one who stays with him. She can't leave, she has to be there with him, and when she wants to go out, she has to take him with her and when she goes out with him she has to hold his hand." "Por lo menos ella tiene que estar con el, entonces yo salgo para la calle y ella es la que lo atiende... Ella no puede salir, ella tiene que estar aqui con el [Mario] y cuando va a salir tiene que arrancar con el de la mano. "

Gerson's father: "Well, the responsibility is doubled for the mother, because it's more responsibility than for a normal child, and the father, well... no one wants to have a problem hanging over them, and a child such as this is a problem. You don't act the same when you have a problem as when you don't have one, it's a greater responsibility for the rest of your life. " "Bueno, la responsabilidad es doble para la madre porque la responsabilidad es mayor que la de un nino normal y el padre bueno.. .nadie quiere tener un problema encima y un nino de esta clase es un problema, uno no actua igual cuando tiene un problema que cuando no lo tiene, es una responsabilidad mayor para el resto de la vida. "

Gerson's mother: "He [the husband] was the provider, and I was the housewife... Although he loved the boy, it was always me who gave him his medicine, who took him to the bathroom, because I made the same mistake as many other mothers in Hispanic families of taking on the role of housewife and primary caregiver to the family. All the decisions concerning ray son were mine, so I ended up being relegated all the responsibility. " "El era el proveedor y yo la matrona de la casa... aunque el le ha dado amor al nino pero la que ha estado para darle su medicina, para llevarlo al bano soy yo, porque yo cometi el error de muchas madres en familias 118

Hispanas que uno toma el rol qua la matrona de la familia as uno, qua las decisiones de mi hijo son las mias, entonces lo qua consagui fua ralagar toda la responsabilidad da mi hijo."

Mario's mother: "I also need a moment to relax and unwind... I wish there was someone else who could take my place under the same circumstances. " "Yo necesito tambien un momento de expansion... que haya otra persona qua ocupe mi lugar en las mismas condiciones."

A mother perceives her attachement to her child from a cultural perspective:

Gerson's mother: "I've watched my other kids grow up, and then on the other hand. I've watched him, perhaps the sweetest of my children, certainly physically the strongest, but mentally, there he stays for all time, and it's very sad. At least. I'm not saying that Hispanics are more sensitive or that we love our families more [than other cultures], but I definitely believe there are certain cultural aspects that influence how we face this situation, you understand what I mean. Like I said. I'm not trying to say that we love our families any more than other cultures, but for those very sociocultural aspects that I maintain that we have, it makes it more difficult, because you tie yourself too closely to the child, and it's terrible." "Los he visto crecer [a mis otros hijos] y en cambio he visto a mi hijo quizas el mas hermoso, mas fuerte quedarse ahi por todo el tiempo, y eso es muy triste por lo menos yo no digo que los Hispanos seamos mas sensibles o tengamos mas amor por la familia pero totalmente de todos modos hay ciertos aspectos culturales, tu me entiendes que influyen y eso no quiere decir que tengamos mas amor que otras comunidades pero por esos mismos aspectos sociales o culturales que te digo que tenemos, se hace mas dificil porque uno se pega demasiado al nino y es terrible"

Children with more severe cases of autism develop a constant dependency on their mothers; some parents reported that the most difficult part is the lack of 119 independence of children with autism, because they need assistance for personal care and socially:

Claudia: "In other words you can’t say, 'I'm going to rest now’." "O sea que Ud. no puede decir, 'voy a descansar'." Mario's mother: "No, not even here at home, I can't say I'm going to lay down because I don't feel good or because I'm tired or sleepy... Neither can I say I'm going to the doctor. If the homemaker comes to take care of him. I'm always impatient because he can be here fighting when he sees I'm not here, and then what happens is I end up taking him with the homemaker, and she watches him for me at the doctor's office, and if he goes just with me without her, then he has to go into the examining room with me, that's the only way I can go." "No, ni siquiera aqui en la casa, yo no puedo decir me voy a acostar porque me siento mal o porque estoy cansada, o tengo sueno... y tampoco puedo decir me voy al medico.. si viene la homemaker a cuidarlo siempre estoy impaciente porque el puede estar batallando aqui y como ve que yo no estoy lo que hago es que me lo llevo con la homemaker y ella me lo cuida en la oficina del doctor y si el va solo conmigo el entra a la visita conmigo, asi es como unico yo puedo ir. "

Gerson's father: "Even so, he [autistic child] is not an independent person at all, he depends more on the mother. He hasn't progressed as much as other children who are limited. " "Ann asi el [nino autista] no es una persona independiente en todas sus cosas y depende mas de la mama, el no ha avanzado tanto como otros ninos que son limitados."

Claudia: "What has been the hardest thing for you in raising Mario?" "Que ha side lo mas dificil para Uds. para criar a Mario?" Mario's mother: "At least for me, it's his huge dependence on me, because he's not the least bit independent. I have to advise him and help him because you can't tell him to do anything by him. He knows how to eat, but if he sees he's alone, he starts to throw his food. He knows how to dress himself, but if you're not watching him, he won't get dressed, or 120

he'll throw his clothes; the same kind of things happens with giving him a bath." "Por lo menos para mi es esa dependencia tan grande que el tiene de mi porque es que el no es independiente para nada hay que asesorarlo y hay que ayudarlo, estar con el porque a el no se le puede mandar hacer nada solo. El sabe comer pero si ve que esta solo comienza a tirar la comida. El se sabe vestir pero si no lo estas mirando no se viste o tira la ropa, si lo bano es igual. " Claudia: "And what is the easiest thing?" "Y que es lo mas facil?" Mario's mother: "Nothing is easy with him." "Nada es facil con el." Mario's father: "Nothing is easy." "Nada es facil. "

Gerson's father: "He always wants to be right behind her, it's like having a baby, because she gives him too much, too much affection all the time, and then that affects her, she doesn't have any independence. " "[El] quiere estar detras de ella, es como tener un bebe porque ella le da demasiado, demasiado carino cada rato y entonces eso la afecta ella, ella no tiene ninguna independencia. " And when behavioral problems occur, mothers often have the sole responsibility of taking care of the child, and at the same time continue with the other responsibilities of taking care of the house: Mario's mother: "It's just that he does not listen to anyone else and doesn't behave for anyone else. If he's looking at me, he knows he has to behave; as soon as he's out of my sight, he thinks the whole world is his for the taking, so what he likes to do is get into mischief and breaks things." "Es que el se ha encasillado en mi y no se comporta bien con otras personas, si el me esta mirando, el sabe que tiene que comportarse bien, es que a la vez que me pierde de vista ya se cree que tiene el mundo libre para el, entonces lo que le gusta es hacer maldades y romper. " 121

Mario's mother: "It's very confining to have a child who behaves that way." "Es muy esclavizante cuando hay un nino con ese comportamiento. "

Gerson's mother: "I was not in control in my own house... because really I was always stressed out with the kid on top of me, the house was a complete mess, everything, everything. " "Yo no tenia control en la casa.. porque realmente estaba en un estado de nervios y todo el tiempo con la criatura arriba de ti, la casa estaba disfuncionada, todo, todo."

Husbands expect their wives to resolve most problems in relation to the children:

Mario's mother: "There are times when I'm depressed, many times I tell him it would be better to live alone, because I don't have a husband who supports me, he doesn't help me with anything; rather, he makes my life more difficult, and then I still have to take care of the house, the kid, the older kids who all have their own problems, and my husband ignores them all completely, and then he tells them, go talk to your mother, and I tell him, you take care of it, don't count on me to take care of it. It would be better if he would try to take some of the load off of me, but he doesn't do anything. " "Hay veces que estoy depresiva, muchas veces le digo a el que es mejor que yo viva sola porque yo no tengo amparo de el [husband] ninguno, el no me ayuda a nada, al contrario me complica la existencia, entonces tengo que desenvolver [take care of] la casa, desenvolver el nifio, ver los grandes cada uno tiene su problema y el [husband] se desentiende de todo, de todo y dice hay que hablar con tu madre y yo digo pero resuelvelo tu, no te atengas a que yo resuelva, mas bien trata de quitarme cosas de arriba pero el no hace nada. "

Mario's father: "Well, he [Mario] doesn't go out much with me, his mother is the only one who can control him a little better, it seems because I'm always kissing him., he pays better attention to his mother." 122

"Bueno, el [Mario] no se va mucho conmigo, la madre es la que lo contrôla un poquito mejor, parece que porque yo lo estoy besando siempre...elle hace mas caso a la madre. "

Jesus' mother: "It is very difficult because when my husband gets home, I would like him to help me, but all he does is go to sleep. " "Es muy dificil porque cuando el [husband] viene [de trabajar] quisiera que el me ayudara pero el llega es a dormir. "

Fathers recognize the responsibility that mothers have:

Gerson's father: "I can go out to get a break, even if it's just a drive in the car, but she has to be with him 24 hours a day. " "Yo puedo salir a despejarme, aunque sea dar una vuelta en el carro y ella tiene que estar ahi 24 horas con el. " Gerson's mother: "I am full time, but he's... [the father] "Yo soy full time pero el es..." Gerson's father: "Part time." Gerson's mother: "because I'm the one who bathes him, who cleans him, who feeds him. " "Porque yo soy la que lo bano, lo limpio y le doy la comida."

On the other hand, because the child becomes the mother's sole responsibility, fathers attribute the attachment that the child has to the way the mother deal with the child. The following dialogue describes their struggle: Gerson's mother: "When he was growing up, every day he became more dependent on me, and I can tell you that to a certain degree, that's not healthy. For example, yesterday, he wouldn't let go of me... he was like a watchdog. " "El nino a medida que crece cada dia es mas apegado a mi y te lo puedo decir de una manera que no es sana. Ayer por ejemplo no se despego de mi... parecia mi perro guardian." 123

Gerson's father: "I told you, it's because you treat him like a two year old." "Yo te dije es que tu lo tratas como un nino de dos anos. " Gerson's mother: "That's because it seems to me that he responds better that way." "Es que yo siento que asi es como mejor me responde." Gerson's father: "Then that's the price you pay. " "Entonces esa es la consequencia. " Gerson's mother: "If he has a low IQ, I can't very well treat him like a big kid." "Si el tiene un IQ [bajo], yo no lo puedo tratar como un nino grande." Gerson's father: "Then what are you complaining about? He's responding to you the way you treat him, like little kids are with their mothers, always underfoot. " "De que te quejas entonces? el esta respondiendo como tu lo tratas, a los ninos que estan asi chiquitos son con la mama para arriba y para abajo. " Gerson's mother: "But that's terrible." "Pero es que es terrible."

A father recommends ways to separate the child from the mother in order to encourage more independence in the child with autism:

Gerson's father: "If she gave him a little more room, let go of him a little more to have some time to herself, I think she would be better off, and I tell her, then don't complain. If she's sitting with him, she talks to him like a baby, touching him, and I tell her she shouldn't do that so often, because it creates that dependency in him that keeps her tied to his side. " "Si ella le diera un poquito mas, soltarlo un poquito mas para que se quede solo, yo pienso que le iria mejor, yo le digo despues no te quejes y si esta sentado con el le habla como un bebe y sobandolo y no le digo que no lo debe hacer pero no cada rato porque crea en el una dependencia que constantemente tiene que estar. " 124

But when a child with autism has not learned some skills, mothers feels guilty

because they often wonder if they did not do what they are supposed to do: Gerson's mother: "There have been times when I feel a little guilty, for example. I'll think when I'm feeding him, the kid would know how to eat better if I gave him more independence. I always ended up giving him the food, and they are things I'm so used to doing that sometimes I don't remember [that I'm going to let him do it on his own], and I'll say, what am I doing? and then I feel bad... There was a period when I believed he'd always be small and with me, and he wouldn't need anybody else. Well, that stage is past, and now he's in the stage where I feel like I've lost the opportunity to show him more, to give him more independence; but he just can't learn. " "He tenido tiempo que me siento un poco culpable, pienso que por ejemplo darle la comida, el nino podria saber comer mejor si yo le diera mas independencia. Yo termino siempre dandole la comida y son cosas que estoy tan acostumbrada que a veces no me acuerdo y digo que estoy haciendo? entonces me siento mal... Tuve un tiempo que uno cree que va a estar siempre pequeno y con uno y no va a necesitar de nadie, es como que esa etapa ya paso y ahora esta en la etapa esa como que he perdido tiempo en algunas cosas de ensenarlo mas, darle mas independencia a el, pero es que no aprende."

Children with autism develop a means communication with their mothers that no one else can understand. Some mothers call it a "sixth sense" that mothers have: Gerson's mother: "He knows a little sign language, but he doesn't use it with me, because we communicate with each other with looks. There's tremendous communication between this child and me. I think this way of communicating I have with him is different than I use with my husband or with the other kids. It's very extreme, and I tell you, it's not normal, and at times I get exhausted and resentful... You could say it's an emotional connection, spiritual even. " "El sabe un poquito de sign language pero conmigo no lo usa porque es que nos entendemos de miramos, hay una comunicacion tremenda entre ese nino y yo... yo creo que la comunicacion que yo tengo con mi hijo 125

autista no es la que yo he tenido con mi marido ni con mis otros hijos, es una cosa extrema y te voy a decir que no es normal, que hay momentos que uno se cansa y se resiente ... Una coneccion emocional, espiritual te podria decir que si la hay."

Gregorio's mother: "He doesn't say what hurts him, but your sixth sense tells you... when you first discover you have such a child, there's nothing you can do... you're always going to be chained to him, by his cries, by his bad moods, what he doesn't like, everything. You are live inside of them. You don't need words, just looks. " "El no dice lo que le duele pero el sexto sentido de uno le dice ... en el momento en que uno ve que tiene un nino asi, no hay nada que pueda haber... uno va a estar siempre pendiente de el, del llanto, el mal humor, lo que a el no le gusta, todo. Uno vive dentro de ellos... Las palabras no hacen falta solamente con una mirada. "

Mario's mother: "He doesn't understand anyone else [Just me]." "El no entiende a mas nadie [que a mi]."

And mothersbecome the "guardian angels" of these children:

Gregorio's mother: "You're the one who guards him the most closely, it's always the mother who tries to protect this child, because you know he is defenseless, so defenseless, and he doesn't know to be afraid of anything, heights or danger, anything." "Uno es el que se encierra mas en el nino... siempre es la madre que trata de protéger esa criatura porque uno sabe que es algo indefenso, bien indefenso, no conocen temor, altura ni peligro. "

Gerson's mother: "He knows that with me he has everything, he knows I'm his protection, and he doesn't need to understand or assimilate it [he just knows]." "El sabe que conmigo tiene todo, el sabe que su proteccion soy yo, el no lo puede entender ni asimilar." 126

"His siblings"

In this study siblings were not interviewed directly; however, information

on how siblings have been affected by the presence of autism in the family is a

point of view provided by the parents. The following excerpts reveal their

perceptions of how their other children might be affected by having a sibling

with autism. When the child with autism has a sibling who is of a closer age

parents get concerned that the other sibling is imitating the child's inappropriate behaviors and it is a cause for being concerned: Roily's mother: "He [sibling] started using gestures like Roily instead of saying do you want juice? he will pick up the cup and say ummmh, he will make the noise ummmmh. 1 told him, you have to say do you want juice or just say juice. Even playing a lot of activities when they are running around that they play tag and when [sibling] wants to get his attention, usually takes his hand and he holds his face to talk to him because other than that he does not pay attention to him at all. "

Jesus' mother: "For me it's a problem having Jesus how he is, and having his brother who is the same age, imitating everything he does, even up to screaming. His twin knows perfectly well how to talk, but sometimes, he starts making the same noises [as Jesus], and 1 tell him, 'you can talk, you don't have to yell... It's a problem, because I have them both acting like they are autistic... When they're together, 1 have problems because they want to eat paper. " "Para mi es un problema tener a Jesus de la manera que es y tener a [un hermano] de la misma edad porque esta imitando todo, imita hasta gritar. [Twin brother] sabe hablar claramente y a veces empieza 'ahhhhh' y yo le digo 'tu puedes hablar, tu no tienes que gritar'... Es un problema porque los tengo a los dos como si los dos fueran autistas ... Cuando estan juntos tengo problemas porque me quieren comer papel." 127

Sergio's mother: "I had to take her [his older sister] back to [the home country] because she was imitating his same sounds, and his behavior." "Me la tuve que llevar para [pais] porque ella [hermana] estaba cogiendo los mismos sonidos de el y su comportamiento."

Roily's mother: "[sibling] Has stopped talking to him when he wants Roily's attention, he'll go to Roily and gesture him like he does, which is bad because I want him to talk to him but he has been doing the same thing Roily does to him, that is how he is been communicating with him. He [brother] has been showing him that it is okay not to talk, okay we can still understand each other, and they do. "

However, for siblings, learning is reciprocal:

Jesus' father: "You know what I think, and I know it's for certain, with one having this condition, and the other being normal, they are teaching each other, both of them are learning, and each of them imitates the other. " "Sabe que creo, y se que es cierto, uno por tener su condicion y el otro por ser normal, el uno al otro se estan ensenando, ambos estan aprendiendo.. y se imitan ambos." A mother feels that the autistic child might not be the "ideal" mate for his brother:

Jesus' mother: "I think his twin suffers because he doesn’t have an ideal companion. " "Yo pienso que [twin brother] sufre porque no tiene el companero ideal. "

On the other hand, children with autism like to play with siblings and siblings enjoy their company: Sergio's mother: "She's [the youngest sister] very affetionate with him, and she's very careftil of him." 128

"Ella [hermana menor] es carinosa con el, ella lo cuida mucho a el tambien. "

Rolly's mother: "They love each other but they don't know how to play with each other... the big one comes out crying because Roily overpowers him."

Parents who have children who are younger find it difficult to tell their other

children that they have a "special brother": Claudia: "Do you think that your older child is aware that there is something wrong with him?" Rolly's mother: "I think that he is aware, he does not know what because it's hard to explain to a five year old about autism, I don't know how to do it, I am still looking for it. "

Jesus' mother: "Yes, she [the sister] knows he's a 'special' child... she realizes he doesn't understand things like she does; she also knows he can hit harder... with Jesus, she knows she needs to be afraid [to be more careful], because he doesn't know what a knife is [when they're playing], he doesn't know the difference between a knife and a toy. " "Si, ella [hermana] sabe que el es un nino especial., si ella sabe que el no entiende las cosas como ella, ella sabe que el se puede golpiar mas facil... Con Jesus ella sabe que tiene que temerle porque Jesus no sabe lo que es un cuchillo [cuando juegan], no sabe la diferencia entre un cuchillo y un juguete."

A parent tells her older son that he has a "special" sibling:

Rolly's mother: "All I tell him is that Roily is different, he is special, we can say that he is special and that he does not understand like he understands, that you have to be a little more patient with him. "

When siblings are older they are also affected by the presence of autism. Some might feel ashamed: 129

Gerson's father: "Yes, it has to have affected the other kids. The oldest has become a very rebellious person, especially with his mother. I think it's because of his brother's problem- he's one of those kids who is ashamed of his brother's illness. Maybe not so much now, because I see him being very careful and affectionate at home, but he won't take him out to play like his other brother and sister do, and I guess it's because he's ashamed of him. " "Si, tiene que haberlos afectado [hermanos(as)] ... el mayor se ha vuelto una persona bien rebelde, mas que todo con la mama.. Yo pienso que sera los mismos problemas del nino. ..el es uno de los que se averguenza de la enfermedad del nino. Ahora quizas no tanto porque yo lo veo que le da mucho carino en la casa pero el no lo saca a jugar afuera como los demas, la nina y el otro [hermano] si pero el no lo saca afuera, me imagino yo que se averguenza. "

Mario's mother: "My second child doesn't have anything to do with Mario, and when Mario gets nervous, he says, 'look, look' and I tell him, 'no, son that's normal [for him]. ' So it seems like he gets nervous when he sees him. " "El segundo no esta relacionado con las cosas de Mario y cuando Andy se pone nervioso el dice 'mira' 'mira' y le digo 'no, hijo eso es normal'... entonces parece que se pone nervioso cuando lo ve. "

Furthermore, some might find a different way to tell their friends about their brother with autism: Gerson's mother: "So imagine what it's like to have such a child, because here we are talking, just chatting, making small talk, and then my son, who loves sports, and although he's a big kid, 6' 5," he's not strong like Gerson, my autistic son, nor is he as strong as my oldest son... So then, when his friends come over, he always introduces his brother [Gerson] a certain way, because the other kids aren't used to seeing a person like him, he makes a lot of noise, although he doesn't talk much, he's quiet with words, but he has a huge voice... So his brother introduces him, you're watching Gerson, and he [the brother] says, 'look how strong he 130

is,' and he touches him, and he says, 'you know, he'd be a great football player, ' all those things that make you smile when you see them, and you enjoy them, but they're really quite sad. " "Entonces fijate de que manera afecta tener un nino asi porque estamos hablando, trivialmente sale una conversacion entonces [mi hijo] que le encantan los déportés, aunque el es un nino grandisimo que mide 6" 5' pero no es fuerte como Gerson que es mi hijo autista, ni como mi hijo mayor ... entonces cuando llegan los amigos de el hay una manera de el siempre introducir a su hermano porque los ninos que no estan acostumbrados a ver a un nino de estos, mi hijo hace mucho ruido, el no habla mucho, es mustico pero tiene un vozarron... el lo introduce, tu estas viendo a Gerson, le dice, mira que fuerte y lo toca y le dice tu sabes lo bueno que hubiera sido para [jugar] futbol, todas esas cosas que en su momento tu te souries y lo disfrutas pero que son bien tristes." On the other hand, some parents think that the child with autism has not had an

impact on other siblings: Claudia: "And what impact do you think Gregorio has had on the other children?" "Y que impacto cree que Gregorio ha causado en sus otros hijos?" Gregorio's mother: "None, because his brothers and sisters have such strong love for him. I mean, they love him a lot, because they've watched him since he was born, they've watched him grow, but they treat him the same as any other kid. They pick on him, they push him around, they drag him around, they play with him like they would with a normal kid." "Ninguno, porque ese es el amor grande que tienen sus hermanos.. o sea lo quieren, lo quieren mucho porque lo vieron nacer, crecer pero lo tratan igual como cualquier nino, lo molestan, lo empujan, lo jalan, juegan como lo normal."

And siblings may perceive their brother with autism still as a "baby":

Gerson's mother: "They still see Gerson as a small child. I think that's what's helped them deal with the situation so well, because when a small child does things he shouldn't, you have more patience with him [than 131

with an older child], because you know he's small [and he doesn't know any better]. And so here's my 18 year old son, the 17 year old, even the younger sister all see him as their 'baby' brother. " "Ellos siguen viendo a Gerson como un nino pequeno, eso es lo que les ha ayudado a sobrellevar la situacion porque un nino pequeno cuando hace cosas incorrectas tu le tienes mas paciencia porque tu sabes que es un nino pequeno y asi mi hijo de 18 anos, de 17 e incluso la nina lo ve como su baby brother. " Siblings also get concerned that in the future they might also have a child with autism: Gerson's mother "My oldest son asked me, 'Mommy, do you think I have any chance of having a baby like Gerson?"' "[mi hijo mayor] me dijo 'mami, tu crees que yo tenga chance de tener un hijo como Gerson?"' and parents get concerned about their 'normal' children's future:

Gerson's mother: "I don't know what the likelihood is of seeing a "cycle" of autism repeated in the family. It's something I've never read about, although of course I know that many mental illnesses are hereditary, they can run in families. That's something I don't like to think about, that when my older children do have a serious relationship, that they could have serious problems with their partnenrs when they find out there's a brother like this in the family. I know how I've raised them, but I don't know, they might be ashamed; I do know they'll worry. They'll worry because they've suffered, and they have suffered because of it as well. And so of course, we all wonder, what are the chances? could it pop up again? They could have a child like their brother, it's something horrible for me to think about, and I haven't questioned [the possibility] for years. " "No se hasta que punto pueda ver el autismo otra vez repetido en la familia/ Es algo que nunca he leido pero yo si se que en la familia las enfermedades mentales se reflejan mucho en la familia. Eso es algo que a mi me tiene muy mal pensando que cuando mis hijos de verdad tengan una relacion seria de que eso pueda ser un problema serio para ellos de 132

que se enteren que tienen un hermano asi. Yo se de la manera que los he educado yo no se van a sentir avergonzados; pero yo se que se van a preocupar porque ellos han visto como yo he sufrido y ellos han sufrido bastante, digo hasta que punto pueda afectar esto?, se podra repetir? podran tener un hijo asi igual que el mio, eso es algo que es terrible para mi y nunca me lo habia questionado anos atras."

"We can't go on vacation" A child with autism affects parents socially too, who have to restrict their social

life because of the child's behavior: Gerson's mother: "Not just socially, but in all aspects [of life], sexually, everything, you find yourself frustrated to have such a problem... I am always worried about the boy, always, about everything, friendships, with the family, how to get work done at home, even my relationship with my other kids, everything." "Socialmente y en todos los aspectos, sexualmente, en todo te encuentras frustrada con un problema asi... Todo el tiempo a mi me ha preocupado muchisimo lo del nino, mucho, mucho, con las amistades, con la familia, como funcionar en la casa, mi relacion con mis otros ninos tambien, en todo. "

Gerson's father: "We can't take vacations because it's very hard with him. He'll throw a tantrum on the plane, he did that once when he was little, and you can't control him [once he starts]." "Nosotros no podemos ir a unas vacaciones porque es muy dificil con el, le da una cosa de esas [tantrum] en el avion, a el le dio una cuando chiquito y uno no lo puede controlar. " When autistic behaviors are displayed socially, at the beginning parents feel awkward because some outsiders might think that their child's behavior is the result of their parenting skills: 133

Rolly's mother: "They probably think, look at her she doesn't know to take care of her kids, because they don't know, they don't have a clue what it is or why a child is like that so they probably think look at her she is out of control or doesn't know how to take care of her kids, definitely. But it doesn't bother me anymore because I know what is wrong with him. "

Sergio's mother: "People believe that it's a bad upbringing, that you don't know how to teach your child how to behave, but after a while of watching him, then they realize that he has a problem. " "Creia la gente que es como mala educacion, que uno no sabe educar al nino por el comportamiento, pero a medida que van mirando al nino entonces se dan cuenta que el nino tiene un problema. "

Even when parents have to discipline their children in front of others:

Rolly's mother: "It's hard to go in public with him because 'these' people don't understand even when you go shopping to the supermarket and stuff like that, you have to be very strong and firm with him when you tell him something so other people take it as abuse, like you are abusing your child, look at that mother, how she talks to the child but they don't understand that you have to talk to him like that. " Parents get concerned about their children's inappropriate behavior in public places: Sergio's mother: "On one ocassion I felt so bad because he was peeing there in the store, he [Sergio] came and got his stuff o u t... and I said to him [to the store owner], "I'm so sorry, please forgive him, he's handicapped, " but I felt like sinking through the floor. Because there are people who don't understand about his handicap, then they even go so far as to say things [to your face], and you feel very bad." "Una vez me senti tan mal porque se estaba orinando ahi en una tienda, llego y se saco su cosita... y yo le dije "I am sorry, perdone, el es un nino handicapped" pero me senti como si se me fuera el mundo. Porque hay personas que no entienden que son ninos con problemas, entonces llegan hasta decir cosas y uno se siente muy mal. " 134

Mario's mother: "So then the limited social abilities he has also [limit where we can go]. You take him out somewhere, and he's quiet for awhile, he'll sit still for awhile, but before long he gets restless and he doesn't want to sit down anymore, with him you can't go anywhere." "Entonces la poca sociabilidad que tiene tambien uno va a algun lugar con el y por un rato esta tranquilo, por un rato se sienta pero al poco rato se desespera y ya no quiere estar sentado, con el no se puede nada. " Outsiders do not understand their child's behavior and make parents feel bad: Sergio's mother: "I went another time to another store, and Sergio began making his noise, "mioooo," that he makes, and I felt very embarrassed. Then a man came up to me, who didn't know he was my son, and said, "that kid is crazy. " It was like he had punched me in the heart, and I told him, "look, that kid isn't crazy, he's autistic; you're the one who is crazy to say he is crazy; you have no idea what it's like to have a handicapped child, " and I said, "shut up before God punishes you. " "Yo fui otra vez a otra tienda y empezo Sergio "mioooo" como el hace "ioooo" entonces yo me senti muy desesperada y vine un hombre que no sabe que el es hijo mio y dice 'ese nino esta loco'.. me dio una cosa como que me dieron un punal en el corazon y le dije.. 'mire ese nino no esta loco el es un nino que es autista, mas loco es usted al decir que ese nino esta loco. Ud. no sabe lo que es tener un nino con problemas' le he dicho, 'callese que Dios lo va a castigar'. " In order to avoid feeling embarrassed, they isolate their children with autism from public places:

Jesus' father: "It bothers me on ocassions, for instance when I go shopping, or go out to eat, not for the other people, because they don't matter to me, but because he can't stay still in one place... well, it bothers everyone else to have listen to a child scream, or have him mnning all over and not be able to keep still." "Me afecta en ocasiones como cuando uno va de compras o cuando uno va a cenar y almorzar, no por las otras personas, porque eso yo lo tomo de menos,... pero porque no puede estar sentado en un solo sitio... entonces a los demas les molesta de oir un nino gritar o corriendo alrededor que esta intranquilo." 135

Gregorio's mother: "Since they are hyperactive kids, they are so wired up that many people will even make ftin of you, but even that doesn't stop me because since I don't get to go out very often, when I do, I take him with me wherever I go." "Como son ninos hiperactivos, son tan desinquietos que mucha gente hasta se burla de uno. Pero eso tampoco me ha impedido a mi porque como yo no soy casi de salir y me lo llevo a donde sea. "

Roily's mother: "Dealing with other people that don't know what autism is all about... we got into a restaurant, and you know. Roily is Roily and he is not going to be quiet, he is not gonna stay still and he'll start fighting and the person next to him they'll say something and I'll say you have to excuse him because he is autistic and they'll say "hay que Undo" [how cute] and I just want to belt them because they don't know what he is, they don't know what he is.... I don't want to hear that." Claudia: "What do you want to hear?" Roily's mother: "'Ok, don't worry, it doesn't bother us, we'll deal with it, leave him alone, don't worry about him '.... it is difficult, I don't want to take him anywhere. "

Parents themselves may start separating from their friends because they fear if their friends will not understand their child's autistic behaviors:

Person's mother: "When the kids were little, of course, you wanted to be like the other parents and let them out to play together for a while. But for us it was much harder, even my friends... I stopped inviting anyone over... I didn't feel like it, or felt like I couldn't, because in a normal house, you don't have to try to talk over a child getting into everything. He's like a little wild animal... It didn't bother me, but I think it bothered my husband not being able to talk to anyone, to have a normal evening with friends, or just have dinner if they were to drop by. " "Mientras que los ninos cuando eran pequenos tu los conformabas con que fueran a jugar un ratico afuera pero para nosotros era mucho mas dificil, ya los amigos, yo empeze a no invitar a nadie a la casa.. No tenia 136

el deseo o no se podia porque en una casa normal tu no puedes hablar con unas personas y el nino subiendose por aqui.. es como un animalito salvaje... No me molestaba pero quizas a mi marido le molestaba no poder hablar con alguien, tener una veleda normal o una comida si venian a la casa. "

It also affects in limiting social activities with other family members and friends;

Mario's mother: "I can't say, I am going to visit my son for a week to relax, because I have to go with him, and so instead. I'd end up with more problems. " " Yo no puedo decir me voy a ir una semana para la casa de mi hijo para relajarme, porque tengo que ir con el, al contrario tengo mas problemas. "

Gregorio's mother: "You separate yourself from anything social meetings, parties, just going out for a walk. " "Uno se aparta de todo lo que es social, una reunion, una fiesta, un paseo. "

However, for Mario's father, it has not limited his social activities:

Claudia: "Has there been any change in your social life?" "Ha habido algun cambio en su vida social?" Mario's father: "No, it's always the same, we never have gone out much. " "No, siempre lo mismo, salimos poco."

Children with autism might make noise that can affect parents, especially when families live in small apartments:

Person's father: "The neighbors will complain about his noise." "Los vecinos se van a quejar por el ruido del nino. " 137

Parents need time to get used to dealing with inappropriate behaviors outside the household:

Jesus' mother: "I take Jesus out a lot, I take him with me wherever I go; and although I have to pinch him or something [to make him behave], I still take him with me when I go out, so he learns how to behave in public. " "A Jesus yo lo saco mucho a donde quiera que voy, yo me lo llevo y aunque tenga que darle un apreton o eso pero me lo llevo para que el se sepa comportar en los sitios."

Person's mother: "Now, yes, I take him out to restaurants, and even if he starts acting up, I'll still take him out about once a week or so, even if it's just to McDonald's, because I think sooner or later, with enough exposure, he'll start learning how to behave himself. " "Yo si voy ahora a un restaurante y el nino se pone majadero porque me parece que si yo semanalmente lo llevo aunque sea a McDonalds el se va acostumbrar y a portar mejor. "

Jesus' mother: "He [husband] has learned that we don't need to feel bad when we go out with the boy, so then he taught him how to walk holding hands because I couldn't walk with him because I was afraid that if we went out, he was going to fall down. Then he told me that I had to teach him to walk hand in hand...and now when we go out, we don't have problems with him, but I think that with time and patience, he will be able to walk without help" "El [esposo] ha aprendido que nosotros no tenemos que sentirnos mal cuando salgamos con el ni nada entonces el le enseno a andar de la manita porque yo no podia andar con Jesus porque yo tenia miedo que cuando saliera se iba a soltar... entonces me dijo que tenia que ensenarle a andar de la manito ... y cuando salimos no tenemos problemas con el pero yo pienso que con el tratamiento y el tiempo el va a poder. " 138

Families reflect on the lack of the extended family to deal with this type of children. Most of the families interviewed were new immigrants to this country and have "lost" the help from their families:

Person's mother: "When you have a child like this, I think it's terribly hard not to have anyone [family, support network]... not to have any family close by is terrible, it's horrible." "Cuando uno tiene un nino asi yo creo que afecta mucho el no tener a nadie" " y no tener a nadie de la familia es terrible, es terrible. "

"Parenting a child with autism"

Within the common theme of how autism has affected the entire family, the issue of parenting a child with autism surfaced during the interviews.

Parents constructed their experience of parenting a child with autism: Gregorio's mother: "But with Gregorio, you learn things you never even thought about. We're talking about an autistic child, not just any child. " "Pero con Gregorio se aprende hasta lo que uno ni piensa aprender con el nino autista. Estamos hablando de un nino autista, no solamente un nino."

Person's mother: "You don't learn to be a parent automatically with the birth of a child, you learn day by day, it's a natural, day by day learning process, little by little. You have to live the daily life, watch your children grow up, and they're the ones who teach you, they teach you more than you teach them. " "Porque ser padre no se aprende al nacer, se aprende dia a dia, eso es una experiencia que la naturaleza te da dia a dia, eso es una experiencia que la naturaleza te da poco a poco, tienes que vivir la vida a diario, ver crecer tus hijos y ellos son los que te ensenan a ti, ellos le ensenan mas a uno que uno a ellos. " 139

Parents believe that they are special parents or will end up being a special parent

when you parent a child with autism: Person*s mother: "I think that the parents of these kids almost always have something special [to start with], and if not, they end up having something special, simply from the experience of raising such a child... Parents of autistic children have to have something special, and I think maybe I too have something special, something inside that perhaps makes me different from other people. " "Pienso que casi siempre los padres de estos ninos tienen algo especial y si no lo son, terminan siendolo el hecho de criar un nino a s i... los padres de ninos autistas tienen algo especial y yo digo quizas yo tambien tengo algo especial, algo especial, algo intemo, que quizas eso me hace distinta a las demas personas"

Gregorio's mother: "They say it's a privilege to have such a child. " "Dicen que es un privilégie tener un nino asi. "

Educating the child with autism is seen as essential: Gregorio's mother: "In this case [of autistic children], they're youngsters that one has to take and raise, no matter how hard it is for you, even though nobody else helps you out with it. If we don't try to teach him, he'll never know or understand. If I don't teach him from the time he's very small, then I'll have to do it when he's big. " "En este caso son criaturas que uno tiene que cogerlos y educarlos aunque sea dificil para uno, aunque eso ya nadie se lo quita a uno de encima que es un nino autista y hay que educarlo. Si no lo educamos ese nino nunca va a saber o entender. Si no se le educo desde pequeno menos lo voy a educar de grande. "

Daniel's mother: "The doctor explained that it's at home where we're going to be able to teach him manners... that there are two people in the whole world who have become 'normal' over time, but it all depends on how dedicated the parents are. And from then on, I decided that I would be the one to teach him things. I have to be consistent, constant, like a 140

drop of water that falls onto a rock and eventually makes a furrow. Likewise, I think that it's through my consistency that he will develop habits." "El medico me explico que es en la casa donde el nino se va a cultivar.. que habian dos personas en el mundo que habian llegado a ser normales con el tiempo pero depende de la dedicacion que los padres tengan y entonces desde ahi yo decidi dedicarme a ensenarle cosas ...hay que ser costante.. como una gota de agua que cae sobre una roca y hace un hoyo asi mismo creo que con la costancia mia el nino hace habitos. "

Parenting a child with autism who has behavioral difficulties can also be a difficult task; Person's father: "He gets out of control, and no one can control him, not even me, he's too strong. When he doesn't want something, you have to find some way to pacify him, maybe some music he likes. Another thing is that he's overweight, because he eats too much, because sometimes we pacify him with food, because it works." "Se pone asi fuera de control, nadie lo puede controlar ni yo mismo, tiene demasiada fuerza. Cuando el no quiere una cosa hay que buscarle los medios para tranquilizarlo como, ponerle la musica que a el le gusta. Y otra de las cosas es que el esta sobre pesado porque come demasiado entonces trata de tranquilizarlo con comida porque eso tambien es lo que lo calma. "

Mario's mother: "You never know, one moment he's perfectly calm, and the next he's in a frenzy... he starts to scream, to throw things for no apparent reason, no one's bugging him. That's why when he's quiet, I don't even look at him [for fear of setting him off]." "Uno nunca sabe, esta tranquilo y de momento reacciona... el empieza a gritar, empieza a tirar sin motivo, sin nadie molestarlo por eso yo cuando el esta tranquilo ni lo miro"

Mario's father: "It's very hard to have such a child. You have to be very nice to him, you can't even scold him. " 141

"Es muy dificil tener un nino asi.. lo que hay es que tratarlo bien, no se le puede reganar. "

Roily's mother: "He sometimes gets to a point that he is violent, he'll hit you. He's gotten better but he used to bite, 1 mean he used to throw a bite when he was upset, now he'll bite the sheets and the pillows and even sometimes the mattress. "

Sergio's mother: "Now he's starting to get aggressive with me also, because he doesn't understand. He's a very restless kid, you have to live your life giving him medications just to have a little peace and quiet in the house. " "Ahora se me ha puesto un poco agresivo tambien, sera que no entiende. El es un nino demasiado inquieto hay que vivir con el con medicamento para poder estar un poco tranquila. "

Claudia: "What do you think is the hardest thing about autism?" "Que cree que es lo mas dificil del autismo?" Gerson's father: "Everything, because an autistic person grows up but can't take care of himself... He's someone who doesn't recognize danger or anything, his body grows, but his mind stays a child, and he's not aware of danger... Because he's in another world. The hardest part isn't taking care of him, but recognizing the danger [which he doesn't]. It takes all your time, so you don't have time for anything else, you have to give everything to that person. " "Todo, porque una persona autista crece y no se vale por si misma... es una persona que no sabe lo que es el peligro y de nada, una persona autista crece pero tiene mentalidad de nino y no esta consciente del peligro y de nada.. porque esta en otro mundo... lo mas duro no es atenderlo pero el constante peligro.. te quita el tiempo que tienes para otra cosa, tienes que darle la mitad a esta persona" Parents find it difficult to find a "medium point," a healthy balance, in parenting children with autism: Mario's mother: "Then you can't even get too strict with him, because when you try to force him to do something and he doesn't want to, he 142

gets aggressive. You have to treat him very nicely, but not too loose, because if you're easygoing, then he thinks he's free to do whatever he wants, but then if you're too tight, then he feels tied down and like he has to break that tie. " "Entonces tampoco se puede llevar demasiado estricto porque cuando uno trata de forzarlo a algo y el no quiere entonces coge agresividad, hay que llevarlo ni muy recio, ni muy flojo porque si tu lo llevas muy flojo pues el coge el camino libre para hacer lo que quiere y si lo lleva demasiado apretado se siente atado y como que quiere romper esa atadura. "

Mario's mother: "Go figure, his dad's either too soft or too hard on him, there's no happy medium... and neither of those ways is going to control him." "El padre figurate le da demasiado suave o demasiado duro, entonces el no tiene intermedio ... de ninguno de los dos lados el puede dominarlo."

Jesus' mother: "There are days when he's completely out of control... One day I found Jesus inside the washer with the lid closed, and there he sat, inside." "Hay ciertos dias que el nino no tiene control... a Jesus un dia lo encontre dentro de la lavadora y cierra la tapa y se sienta hay adentro. "

Parents have learned "techniques" to parent a child with autism:

Sergio's mother: "When I see him that way, a little restless, I put music on, and then he changes. He likes music, he has his own way of dancing, and do for me, the situation changes, and I can forget for a little while that he's autistic. And then there are times when I treat him more roughly, because everything can't be happy and easy." "Cuando yo lo veo asi un poco inquieto, yo le pongo musica, entonces el cambia, a el le gusta que la musica, hace su manera de baile entonces para mi cambia y se me olvida todo que el es un nino con problemas y cuando hay momentos que yo lo veo un poco fiierte yo le doy porque no todo es carino." 143

Besides basic parenting, some parents take on the role of "educating" their children to help them achieve things, in spite of the fact that little is known about autism and the learning possibilities for children who have it: Daniel's mother: "These are kids that people consider to be low IQ, and so all they do is set them to painting, so at the end of the year, all they've learned is their name. But I started to teach him things when he was four years old, I taught him very patiently." "A estos ninos como los consideran con un IQ bajo de talento y entonces les dan para que esten pintando entonces son ninos que al ano solo aprenden su nombre. Pero yo comenze desde el principio desde que tenia 4 anos a ensenarle.. con paciencia."

Some children with autism get "different" parenting from their parents because it is not the same as parenting a "normal" child: Claudia: "Do you think you treat him differently from the other kids?" "Ud. cree que Ud. trata diferente a su nino que a los otros ninos?" Jesus' father: "Well, yes, at times I treat him differently. As we've said, at times, they can't understand. It's like they just sometimes lose the ability to understand anything, but other times they understand just fine. So then when he's lost his reasoning [ability], of course I have to treat him differently... The father and mother feel that they have to treat him differently. " "Bueno si, en ocasiones si yo lo trato diferente. Como hemos dicho que a veces ellos pierden el entendimiento porque como lo de el es una cosa leve el a veces pierde el entendimiento, a veces entiende y a veces no entiende. Entonces cuando el esta fiiera de lo normal, si hay ocaciones que se le da diferente trato... el padre y la madre lo sienten que hay un trato diferente para ellos. "

Gregorio's mother: "It's twice as hard as raising a normal child, twice as hard in the sense that you always have to be there at his side. " 144

"Es el doble de la crianza de un nino normal, el doble en el sentido que siempre hay que estar ahi cerca de el. "

Claudia: "Yes, I think you touched on an interesting point when you talked about educating the boy, would you say you've raised Gregorio the same as your other children?" "Si, yo creo que Ud. ha tocado un punto interesante cuando Ud. dice sobre la educacion del nino, Ud. diria que ha educado a Gregorio de una forma igual que a sus otros hijos?. " Gregorio's mother: "Yes,... yes, so that he keeps learning, because I keep getting older, and it's up to me whether I'll have more or less problems as he gets bigger. " "S i... si para que vaya aprendiendo porque entonces yo voy siendo una persona mayor y para tener menos problemas o menos estres para mi. " SUMMARY:

Chapter five, "How autism has changed our lives, " it is one of the longest chapters and one of the most important. Parents elaborated at great length about how autism has changed their lives. Parents describe how it has changed the context of their family, marital and sibling's lives. This chapter is divided into eight categories. They are: "My life changed completely, " "It dysfunctions the family, " "It has affected our marital relationship, " "It is a 24 hour a day job, "

"She [mother] has no independence. " "His siblings, " "We can't go on vacation, "

and "Parenting a child with autism. "

"My life changed completely" deals with how parents' lives have changed in many aspects: individually, socially, psychologically, familially most aspects of lives has changed for parents of children with autism. Fathers found fewer 145

drastic changes in their lives than mothers. Mothers in this study described how

their lives changed drastically, some of them could no longer work they see

themselves "chained" to the autistic child. They could no longer be themselves

and their daily activities revolved around the child. Some described that taking

care of a child with autism was like having a baby all your life because a baby

needs constant attention.

As parents constructed their experiences and feelings, they also spoke about how autism affects them. Mothers reported to feel different emotions such as sorrow, depression, helplessness, uncertainty and not having interest in life.

These emotions surfaced at different times. Most mothers discussed that the first years in dealing with the child are difficult because of the child's behavior and not knowing what to do with them.

"It dysfunctions the family" describes how family life has changed because a child with autism demands constant attention, time, and patience.

Family relations, intimacy, social activities, and other aspects of life changed.

Autism was described as being something difficult to live with because of its behavioral manifestations. Parents whose other children do not have behavioral difficulties reported being ambivalent if autism has really made drastic changes in their family life. In cultural terms, parents describe how expected behaviors 146

and ascribed roles for the parents might cause some difficulties because of the

stress and demands that are placed on the mother as the primary caretaker. As a

result, other duties in the house may be neglected. Differences in parenting

approaches friction among parents.

"It has affected our marital relationship" points to the stresses of having a

child with autism on marital relations. Along with general child rearing

responsibilities, having a child with autism creates greater stress for parents.

Parents describe their experiences of how if has affected their marital relationships; as couples they argue more, some got separated and some lost interest in sex. Culturally it has affected mothers more because they become the primary caretakers and all the responsibility falls on their shoulders. Some mothers described being resentful of husbands who do not give them some relief in the rearing of the child with autism and leave them alone with such responsibility. Yet when separation occurs, some parents who have children with autism might remain in contact because of the children's behavioral difficulties. Fathers attributed their marital difficulties to other causes rather than having a child with autism.

Having a child with autism interferes with some parent's decision of having more children. On the other hand, for parents whose child with autism 147

was the oldest, the birth of a new child brings fears at the beginning but then a

sense of happiness with the arrival of a normal child. Concerns about how the

child with autism might interfere with the new sibling also arise. Finally, the

birth of additional children may cause stress because of the additional

responsibility.

"It is a 24 hour a day job " describes the responsibility and involvement

in the care of a child with autism which is a 24-hour-a-day job. Mothers

describe their role as "full time" care takers. The presence of autism was

described as being exhausting, traumatic for the family, and time consuming.

Fathers recognize the commitment and responsibility of their wives in the care

of the child with autism. However, they generally do not have the burden that

mothers have. Mothers schedules revolve around the child. Those who have a child with behavioral difficulties have more demands made on their time. The way mother and the family in general feel depends on the child's behavior.

"She [mother] has no independence. " Here, mothers speak up and raise their voices to describe how lonely they feel as caregivers of their autistic child.

Mothers constructed the world of autism and the world of mothers. They describe the understanding they capture and how they translate the autistic world. The child with autism becomes attached to them, the mothers are often 148

the only ones who can understand them, mothers get no rest, and most of the

responsibility falls on them. They lose their freedom as individuals and

sometimes their happiness. Living a "normal" life becomes impossible.

Ambivalence arises about loving the child and yet having no relief; thoughts of personal careers are coupled with a sense of dreams frustrated.

Culturally disability places more stressors on the mother because they are the primary caretakers of the child. A disability such as autism requires more attention that any other disability. Mothers describe how other members of the family can have and go on with their lives but they cannot do the same. Fathers recognize cultural parameters within which the mother has to take care of the child, and they often give voice to the view that her responsibility is twice the size of theirs. Besides taking care of the child, the house's chores are the mother's responsibility. Children with autism who have severe behavioral problems develop more dependency on the mothers. However, this dependency on the mother might be looked upon by some fathers as a parenting problem because they view the mothers' treating their children as "babies" as exacerbating the dependency of the individual with autism. On the other hand, mothers talk about their understanding of the "autistic world", of how they translate the world of autism in their every day lives. They also talk about a 149

special communication that exists between mother and child that no one else can

understand. A mother and child understanding often deepens as the years go by.

Furthermore, mothers recognize a variety of emotional states in their children.

"His siblings" describes the perception that parents have about how

autism might have affected siblings. When the child with autism's age is closer

to a sibling, parents expressed concern that the "normal" child imitates some

autistic behaviors. Some think that it is beneficial for the child with autism because they learn from the sibling and reciprocity might be beneficial for both.

Some parents find it difficult to tell their children that their brother is special, their difficulty come from explaining to the kid from a child's perspective.

Having a sibling with autism might cause different reactions on siblings some might feel ashamed, sad, or have no reaction at all. Some siblings perceive their brother with autism as a 'baby' and also get concerned about the future of their brother.

"We can't go on vacation" describes the parents limitations to social activities. Having a child with autism restricts the parents' social activities within the family and outside it. Parents described their experiences of how they felt when their children displayed behaviors in public that others noticed as

"different". Some parents heard from outsiders that they lacked parenting skills 150

because their child was "misbehaving". Parents believe that outsiders like

sensitivity and get to a point of offending them when their children display

"normal" autistic behaviors. Parents often decide against going to public places

with their children and some discontinue the habit of bringing friends to their house because they fear theatothers might not understand their child's autistic behaviors. While parents mentioned that at the beginning they tend to isolate themselves more, they indicate that time is needed to get used to the idea of taking their children to public places.

"Parenting a child with autism, " this last section of Chapter Five describes some general experiences of parents learning to live with a child with autism. Parents mentioned that parenting is something that you learn as you do it, they have learned from their experiences. Parenting is an ongoing process guided by hope that the child will acquire some skills. Some parents mentioned the belief that parenting a child with autism makes you a "special parent" because they have "something" internal that either allows them to cope with autism, or that develops as they parent such a child. Parents constructed their experiences in parenting a child with autism; hope moves them to "educate" their children in spite of what they may have heard about autism. Parents discussed how to educate these children and described that such children are more difficult 151 than other children because their disability requires consistency, dedication, time, and energy. On the other hand, dealing with a child with autism allows parents to get to know the child and at the same time fosters learning techniques that work when such children get out of hand. Finally, they discuss specific techniques that work when their children are "out of control," such as playing music for them and allowing them to play with water. CHAPTER VI

THEY ARE CHILDREN TOO

"No hoy que olvidar que ellos son ninos, que son traviesos, que les gusta mirar, tocar, coger, romper, danar porque si todo nino normal hace travesuras cualquier nino autista lo hace tambien. (Gregorio's mother). "

Translation: "You can't forget that they are children, that they are mischievous, that they like to look at, to touch, to grab, to break, to damage. Because if every normal child is mischievous, any autistic child is too."

INTRODUCTION

Often the child inside of the handicapped child is forgotten. Parents remind us that in spite of their child's disability, children with autism are children too. This chapter deals with the stories of how parents see their children from a developmental perspective, what progress their children have made, and how they make sense of their child's behaviors. They construct "normality" from their experiences and they describe the humanity of their children.

152 153

"He has progressed" Parents talk about what progress they have seen in their children.

Children with autism make progress that should be seen within "an autistic perspective":

Sergio's mother: "In some respects, he has advanced in school, he knows a lot. But they've used a certain method to teach him in school, and he understands [things] by way of drawings, so then when he's hungry he makes a sign to the teacher. " "En cierto aspecto el en la escuela ha adelantado, el conoce mucho. Pero en la escuela le han ensenado por metodo y el entiende por medio de unos dibujos, entonces el cuando tiene hambre le hace una sena a la maestra. "

■Person's mother: "My son has improved; for example, when he was five, he was still in Pampers, but now he can go to the bathroom. Although he's still not totally trained, still, it's an improvement." "Mi hijo ha mejorado, por ejemplo mi nino a los 5 anos usaba pampers entonces actualmente ya puede ir al bano. Aunque todavia no tiene un entrenamiento total pero ya es un poquito mejor. "

Roily's mother: "He is considered high functioning, the teacher says that he has advanced. He started school in September ... and he's already been put into a high functioning class."

Daniel's mother: "Every time he shows more development and I take him to his evaluations, they give me another class on how to treat him [for the purpose of training him] a certain way, and it is a big help, because then I keep seeing results. " "Cada vez el nino se va desarrollando mas y lo llevo a las evaluaciones y me dan una clase para que yo aprenda a tratarlo de cierta manera, me da descanso porque me va dando resultado. "

Jesus' mother: [I've seen progress in him]. Yes, because Jesus was impossible you couldn't get through to him. He was a little tornado... 154

Look, you can see all the holes in my walls, he made those holes... We even had to take him down from the top of the refrigerator. From those times, yes, he has definitely changed. His behavior is also different. " "[le he visto progreso al nino] si porque Jesus era incorregible. Jesus era un tornadito.. mire lo que hay es paredes rotas que el ha roto... hasta un dia llegamos a bajarlo de la nevera, entonces si ha cambiado... el comportamiento tambien es diferente. "

Claudia: "You have seen changes in the boy?" "Ud. ha visto cambios en el nino?" Jesus' father: "Yes, lots, because at first when he wanted something [and couldn't get it], he got frustrated, he wouldn't try to do it, or he wouldn't tell you where it hurts, or anything. All he would do is cry and rest. But now, with time, if he wants, he knows how to say some things." "Si, bastantes, bastantes porque primero el cuando queria algo se fustraba, no actuaba, o no decia a mi me duele o nada mas era llorar, llorar y desahogarse pero ahora con el tiempo si el quiere el sabe pronunciar ciertas cosas."

Mario's father: "At least he's talking better... At least he's progressing in talking. " "Por lo menos esta hablando mejor... esta adelantando por lo menos en hablar. " Some children with autism have some facility with language and understanding: Gregorio's mother: "Gregorio understands a lot, and there are commercials he sees on TV, like McDonalds, all the commercials he sees in English and Spanish, if I take him out and say, 'Gregorio, What is that?' 'Burger King '[spaces means paused speech], I tell him what's here, and 'Me Donalds,' and there is 'Pizza,' 'B 1 i m p i e. ' So I think that means when Gregorio is 15, 20, 30 years old, he'll understand a lot more. I get the impression that he knows how to read, it's just that he can't talk. He gets out the phone book and looks at the names." "Gregorio entiende mucho... si habla, hay propagandas que ve en television como de McDonald's, todas las propagandas que ve en ingles y 155

en espanol, si yo lo saco y le digo 'Gregorio que es eso? "Burger K i n g," le digo que es lo que esta aca "Me D o n a 1 d's" y esta "P i z z a," "B 1 i m p i e, " entonces quiere decir que cuando Gregorio llegue a los 15, 20 0 a los 30 el entienda mucho mas. A mi me da la impresion que Gregorio sabe leer pero no lo puede hablar. El coge la guia telefonica y se pone a mirar los nombres." Many children with autism have expressive language problems, they communicate in a way that mothers understand: Mario's mother: "He tells me, 'Have pain..', because he hurts, he will tell you exactly whre it hurts. If he says, "it hurts here' you can be sure that's where it hurts. But he doesn't know how to explain things exactly. If he has a problem with another kid, he can't tell you the names of his schoolmates, but if I tell him, 'find Andres for me,' he goes and he knows who Andres is. " "El dice 'tiene pain' ... porque cuando siente un dolor el te dice exactamente donde le duele, si el te dice 'duele aqui', pegale el cuno que hay es donde le duele (modismo para decir ponle el sello que ahi es). Pero el no sabe explicar las cosas exactamente, si el tiene un problema con un nino, el no sabe decir ni los nombres de los companeros de la escuela pero si yo le digo buscame a Andres, el va y sabe quien es Andres. "

Mario's father: "I am just now realizing that he's speaking better, because this morning he said to his mother, "Look, I broke wall." "Ahora es que me doy cuenta que esta hablando mejor porque esta manana le dijo a la madre 'mira, rompi pared'."

Gerson's mother: "Lately I've noticed something new when he talks to me. I'll say, "Gerson, what do you want?," I always try to talk to him as if he understands me, I don't know how much he actually understands of my verbal communication, but I keep talking to him, and he begins to act like he wants to talk. I don't know, it could be that he's just imitating the movements of my lips, because sometimes he imitates everything I do." "Ultimamente he notado algo nuevo de que cuando el me habla y digo Gerson que tu quieres?... yo trato siempre de hablarle como si me 156

entendiera, no se hasta que punto pueda entender mi comunicacion verbal con el y le sigo hablando y el empieza hacer como queriendo hablar, no se si es que me esta imitando mis movimientos labiales porque el a veces imita todo lo que yo hago. " Most of the children with autism understand Spanish and English: Mario's mother: "I talk to him in Spanish and he understands it perfectly, and also if I speak to him in English, he understands it perfectly. " "Yo le hablo en espanol y el entiende perfectamente el espanol, si le hablo en ingles tambien lo entiende perfectamente. "

Over time some "autistic behaviors" might disappear and develop other skills such as remembering events and associate them with something they see: Daniel’s mother: "If I tell you, the kid [Daniel] doesn't rock himself anymore, he doesn't spin around, he's made a huge improvement. He doesn't get nervous like before, he doesn't get scared of people as easily, or scream, or if he sees some problem- for instance, he saw a kid in K-Mart break some glasses, and then when we visited [her home country], he said to me, "Mama, that kid broke those glasses, and his daddy spank him, " so then people saw him saying that and they saw that there wasn't a kid or even glasses, so they were thinking, he's crazy. But then I knew what had happened, so then I realized that when he remembers something, he repeats everything that happened." "Si le cuento, el nino ya no se mece, el nino ya no hace cosas que den vueltas, el nino ha mejorado totalmente, ya no se pone nervioso como antes a no ser que alguien lo asuste o lo grite o que el vea algun problema. Por ejemplo el vio un nino que rompio unos vasos en el K-Mart. Fuimos a [pais] de visita y me decia; "mama el nino rompio los vasos y el papa le pego" entonces la gente lo veia hablando eso y veian que no habia ningun nino ni vasos, estaban pensando que el estaba loco. Pero yo sabia lo que habia ocurrido entonces me doy cuenta que cuando el se acuerda repite todo lo que ha pasado. "

Gerson's mother: "In 1984, that song by Juan Gabriel 'Querida' was popular... I'll never forget, I started to cry and my son looked at me and saw me crying, and he touched my face like this, and he laughed. Now 157

he is 15 years old, and he doesn’t cry anymore, but in '85 and '86, when he kept hearing that song 'Querida', he would run around the house, covering his ears and crying... I guess he can remember, he can associate one thing with another, he has feelings, he knows. " "En el 84 estaba de moda la cancion Querida de Juan Gabriel.. nunca me olvido que yo empeze a llorar y mi hijo se me quedo mirando y mi hijo me veia llorar y me tocaba asi la cara y se reia. Hoy mi hijo tiene 15 anos, ya no llora pero durante el 85 y 86, durante esos anos cuando el nino escuchaba la cancion Querida, empezaba a correr por la casa, se tapaba los oidos y empezaba a llorar... me imagine que el puede recordar, puede asociar una cosa con la otra, tiene sentimientos, el sabe." Children with autism have certain varieties of skills, as their mother elaborated: Gregorio's mother: "Gregorio has learned to count from one to a hundred, he can write his name and address. He knows the letters of his first and last names, he knows the alphabet in English and Spanish. " "Gregorio ha aprendido a contar del uno al cien, a escribir su nombre, su direcccion donde vive. Conoce las letras de su nombre, su apellido, sabe el abecedario en ingles y espanol."

Jesus' mother: "If he wants a drink, he looks for the juice and a glass; if he wants a sandwich, he knows to look for the peanut butter and jelly." "Si el quiere refresco, el busca el jugo y busca el vaso, si el quiere pan el sabe buscar peanut butter y jelly. "

Mothers talk about maturational changes, which brings with it the inevitable physical changes from child to teenager: Gregorio's mother: "He speaks a little Spanish... and his voice is changing." "El habla un poco espanol... y la voz le esta cambiando. "

Gregorio's mother: "Gregorio is a very cute kid, not just because he's my son, but now that he's a teenager, he's quieter, easier to be with than when he was little. When he was little, oh my God! If Gregorio were to be born again, I would hope to God he would be bom normal, because 158

Holy Mother!... He wasn't bad, but be was incredibly restless and always into something." "Gregorio es un nino muy lindo, no porque es mi hijo pero ahora que se esta baciendo joven, ahora que es un teenager es mas docil estar con el que cuando era pequenito, porque cuando el era pequenito ay Dios, Gregorio si vuelve a nacer que nazca un nino sano porque, ay mi madre, no era malo sino que era bien desinquieto."

Daniel's mother: "Daniel is a little rebellious at times, because overall, his character is changing; he's coming into his teenage years, so of course his character is changing [like any teenager]." "Daniel esta un poco reacio [rebelde] a veces, como que el caracter sobre todo ahora le esta cambiando ya va a ser un joven como un teenager entonces su caracter va cambiando." Mothers understand the world of autism and get to know their children's behavioral problems and methods to change some behaviors:

Sergio's mother: "When I see him like this, a little restless, I put on some music, and then he changes, and I can forget everything, that he's a child with problems. When I see him get a little aggressive, I scold him, because not all situations can be handled with sweetness and affection [just like a regurlar kid]; he understands when he does something bad. Sometimes when he does something naughty, he goes and hides in his room so you won't find out." "Cuando yo lo veo asi un poco inquieto, yo le pongo la musica, entonces el cambia y a mi se me olvida todo, que es un nino con problemas. Cuando lo veo un poco fuerte [dismptive] yo le doy porque tambien no todo es carino, porque el entiende cuando hace cosas malas.. El a veces cuando va a hacer una cosa mala va y se encierra en su cuarto para que uno no se de cuenta. " 159

"They like to play"

Parents talked about their children's inner world: Gregorio's mother: "You can't forget that they are still kids, that they're mischievous, that they like to look and to touch, that they're going to grab things, break things, cause damage, because if any normal child is going to do these kinds of things, then of course any autistic child will do them too." "No hay que olvidar que ellos son ninos, que son traviesos que les gusta mirar, tocar, coger, romper, danar, porque si todo nino normal hace travesuras cualquier nino autista lo hace tambien. "

Gregorio's mother: "Gregorio is learning... when someone goes where they are [inside of them] you see how they act, what they do, but you don't see beyond the surface, in the sense that they can't communicate [with you], but you keep seeing by how he acts that he knows himself. " "Gregorio esta aprendiendo... uno como que llega ahi donde ellos [adentro de ellos], uno ve lo que actua, lo que hace pero no se llega a fondo, no se llega a fondo por el sentido de que no se comunica pero ya viendolo como el actua quiere decir que el conoce su persona. " Knowing the inner world of autism, parents report that there are days that they withdraw into their inner world more than others: Jesus' mother: "Jesus is super intelligent, but at the same time, he can go days on end locked in his own little world, and then one morning he'll wake up locked in his world but then over the course of the day, he'll start changing, coming out of it. Then I tell him was his time to be closed off [inside himself), because there are also many times when he doesn't close himself off. He went three months without 'hiding' himself, but now he has, starting last night he began making noises, singing songs that [only] he understands, opening his eyes wide. When he gets like that, he has nightmares and when he wakes up [from them], he doesn't recognize me." "Jesus es superinteligente pero tambien el va a cumplir cuatro dias que se encierra en su mundo y por la manana se despierta encerrado en su 160

mundo ya despues se va adaptando durante el dia... entonces yo le digo que llego la etapa de que ya se encerro porque a el pasan tiempos que no se encierra. Pasaron très meses que el no se habia encerrado pero ahora si, desde que llega la noche entonces empieza y se pone a hacer ruidos, a cantar canciones que el entiende, a abrir sus ojitos bien grande, entonces cuando el se pone asi le dan pesadillas y se despierta y no me reconoce." Children with autism show feelings and states of emotion that maybe differently

expressed than the expression of other children: Sergio's mother: "Every now and then he makes me so happy, he's a child who loves to be given affection, he likes to play with others, to be hugged, and for me, that's a gift. I forget the world, I play with him, and hug him and forget even that he has this condition. " "Llega un momento que el me da aquella alegria, el es un nino que le gusta que le den carino, el es un nino que le gusta que juegen con el, que lo abrazen y eso entonces para mi es un regalo, me olvido del mundo, juego con el, lo abrazo y se me olvida que hasta es un nino enfermo. "

Gregorio's mother: "I like who he is. he likes to play games, to be touched [affectionately]. He'll come looking for you to go run around with him or play with him. He's a romantic, happy. " "Me gusta como es el ... el busca jugar, uno le hace una caricia, un juego y el viene y lo busca a uno para ir a correr o a jugar. ..e l es romantico, alegre."

Roily's mother: "He likes to watch TV by himself but he is real lovable. "

Mothers understand their world and can perceive if something is going on with their children:

Person's molhetL "The boy understands who gives him affection and who doesn't, and when I see that he's not feeling well at school, I know what's happening... I know some little thing has gone wrong, and he's not happy about it. He knows, even when you look at him wrong [in a mean way, or mad]." 161

"El nino sabe quien le da carino y quien no, y cuando yo veo que el nino esta mal en la escuela yo se lo que esta pasando... yo se que alguna cosita habra ocurrido que yo se que el nino no esta contento porque el si sabe ... el se da cuanta hasta cuando tu lo miras mal."

Some mothers develop different methods of communicating with a child with

autism: Gregorio's mother: "I'm a person who looks for young children's books, and in every children's book I find not special children but normal ones, so I can keep treating him like a normal kid with a young mind. Even though he's almost a teenager, still I treat him like a two or three year old, to be able to communicate with him, because now he's harder to deal with. " "Yo soy una persona que en cuanto libro encuentro de los ninos pequenos, no especiales pero ninos normales para yo poderlos seguir tratando a el como ese nino con su mente pequenita aunque el es ya un jovencito pero lo trato como si fuera un nino de dos o très anos para poderme comunicar con el porque el ahora es mas difîcil de tratar. " They show affection: Claudia: "How is he in terms of his affection" " "Y en cuanto al afecto como es?" Gregorio's mother: "Sometimes you tell him, Gregorio, go give your aunt a kiss, and he goes and gives her a kiss. He understands. " "Si, a veces uno le dice Gregorio vete a darle un besito a la tia y el va y le da un besito. Gregorio entiende." Claudia: "And he gives you kisses as well?" "Y le da besos a Ud.?" Gregorio's mother: "Yes." "Si" Claudia: "On his own, or do you have to ask him for them?" "Espontanemaente o Ud. tiene que pedirlos?" Gregorio's mother: "Not on his own, but if I tell him, Gregorio, give me a kiss, he'll come and kiss me." 162

"No per su propia persona pero si le digo Gregorio dame un besito, el viene y me da un beso. "

Mario's father: "Yes, he's very affectionate, he's sick, but he's affectionate. " "Si el es carihoso, el esta enfermo pero es carinoso."

Person's mother: "When Person was little, he wouldn't let anyone touch him, only me. Now he'll let you hug him. " "Person de pequeno no se dejaba tocar de nadie, solo de mi ... ahora el nino se deja abrazar. "

Jesus' father: "I feel like at times he hides behind me, like he's looking for warmth and he'll spend about an hour with me. I feel that he understands a little more... I feel like there's a bond between us. " "Yo siento que a veces se rehigia en mi como buscando el calor y esta como una hora conmigo, yo siento por dentro que el entiende un poquito mas... siento que hay un acercamiento entre el y yo. "

Roily's mother: "He is very loving, he likes to be by himself but he likes to be hugged and he likes to be kissed and he likes 'moist'. " Children with autism have feelings, too: Gregorio's mother: "I believe that they [autistic children] have their own feelings [emotions], they have them but they don't express them." "Yo creo que ellos tienen sus propios sentimientos, ellos los tienen pero no lo dicen. "

Person's mother: "He gets frustrated because something happens, he doesn't know what it is, but he does know that he can't communicate it, and it makes him mad. It happened to him more at school, and you know when little kids cry, well, it's a reaction. They cry without tears, especially babies. You'll see them crying and hollering, but Person has reached that stage when he begins to cry because he feels something... they are huge tears, tears and tears." 163

"El se frustra porque algo le pasa, el no sabe que le pasa y si lo sabe no lo puede comunicar y tiene tanto enojo. En la escuela lo hacia mas a menudo y tu sabes que los ninos pequenos cuando lloran pues reaccionan, lloran sin lagrimas, los bebes sobre todo tu los ves llorando y dan gritos, pero Gerson llega un momento que empieza a llorar con un sentimiento... son unos lagrimones y lagrimas y lagrimas. "

Gerson's mother: "He has feelings. He gets aggressive with me when I gesture strongly [angrily] at him, because he doesn't like to be treated badly [mean], he resents it. Immmediately he'll grab your hand and put it on his head. So in other words, he [is saying] caress me, he's like that with everyone. He always comes and grabs your hand... In a way, he's making me re-establish our affection, he's trying to make up with me. I am sure that they don't understand that at school. " "[El] Tiene sentimientos ...e ls e pone agresivo conmigo cuando yo tengo gestos fuertes con el ... porque no le gusta que lo traten mal, se resiente. Inmediatamente te agarra la mano y te la pone en la cabeza, asi con otras palabras, acariciame, asi es con todos. El siempre viene y te agarra la mano ... el me obliga de una manera de establecer otra vez el carino y la reconciliacion conmigo. Yo estoy segura que esto en la escuela no lo pueden entender. " Children with autism enjoy sensual experiences: Gerson's mother: "The boy enjoys water, he likes to take baths, he loves water. He enjoys my company first and foremost, and he enjoys food. To a degree, he isn't suffering." "El nino disfruta el agua, el bano, y le le encanta el agua, disfruta mi compania principalemnte y disfruta la comida... Hasta cierto punto no sufre muchisismas cosas."

Gregorio's mother: "Gregorio loves music, he's fascinated by it. I have a cassette I'll put on, and he loves it. He loves to play. He makes funny gestures with his eyes, with his looks, it's like he's saying, 'come on, let's go'. He wants to tickle me. He's always looking for something, he was a child who didn't look for anything, but now he looks, he looks for someone to play with him. " 164

"A Gregorio le encanta la musica, lo que a el le fascina es la musica, yo tengo un cassette ... lo pongo y a el le encanta... el busca jugar... el me hace gracias con los ojos, con sus miradas el como que dice, ven vamos quiere que me hagas cosquillas, algo el busca, el era un nino que no buscaba nada pero el busca, busca que le hagan juego." "He is intelligent"

Parents view their children from a strengths perspective and they highlighted the skills that their children have: Daniel's mother: "He knows in his mind how to judge time, which is something that surprises me. There are times when he says, "Mommy, you're going to buy me that video, right?" just about the time the check comes, because he more or less understands the passage of time." "El tiene en su mente la cantidad de tiempo, le voy a decir algo que a mi me asombra, porque hay veces que el dice 'mami tu me vas a comprar el video', mas o menos cuando es el tiempo que me llegue el cheque, como que el sabe el tiempo mas o menos que corre. "

Gregorio's mother: "He looks at himself in the mirror, he can dress himself, and then he'll come and model [in front of the mirror]. He looks at himself from the back, from the front, he puts on his t-shirt over his head and pulls down his pants by the waistband, the normal ways to dress. Gregorio understands when you tell him, come and take your bath, put on your pajamas; in the morning, Gregorio, come and eat breakfast, and if he doesn't like something, he won't eat it. " "El se mira al espejo, el se viste, despues que se viste viene y como que se pone a modelar, el mira para atras, para adelante, se pone la camiseta por dentro, se baja el pantalon de la cintura lo que es normal... Gregorio entiende cuando uno le dice ven a banarte, cambiale de pijama, por las mananas; Gregorio ven a desayunarte y si no le gusta algo el no se lo come. "

Jesus' father: "He understands, he knows how to distinguish [between things]; for example, he doesn't forget things. I had a blue car. He would see it one time, wherever it was parked, and he knew when we were going to the car. Without having to point him towards the car, he 165

would already be planted in front of it, "Daddy car, " he already knew where it was... He keeps those things in his memory. " [context: there are a lot of cars parked on the street] "Y tiene un conocimiento, el sabe distinguir , a el una cosa no se le olvida. Por ejemplo, yo tenia un carro azul... lo miro por primera vez, donde quiera que estuviera parquiado el carro, el sabia que ibamos para el carro y el sin uno dirigirse para el carro ya estaba parado enfrente del carro "papi carro" [el] ya sabia que ese era... El sostiene en su memoria."

In describing what a parent meant by stating that their child is intelligent, Jesus'

mother compared her twin children, one of whom has autism: Jesus' mother: "I try to buy them [the twins] everything the same, two identical toys. Suppose Jesus touched this one first, and even though they get mixed up, he knows which one he touched first... It's incredible, and then they start fighting, because for the other twin, they are the same thing, but for Jesus, they're not because he touched this one first, so it's his." "Yo trato de comprarles todo igual [they are twins], son dos jugueticos iguales. Vamos a suponer que Jesus toco este primero y aunque los jugetes se mezclen el sabe cual fue el que toco primero .. es increible entonces se pegan con [hermano] porque para [hermano] son iguales, pero para Jesus no porque el lo toco primero. "

Jesus' father: "His twin is trying to grab the knife and fork, and then Jesus knows. He eats perfectly well, and no one taught him. You can give him a piece of candy wrapped in paper, and he unwraps it; his brother can't do that." "[Hermano gemelo] esta intentando coger el cuchillo y el tenedor, entonces Jesus ya sabe. Jesus come perfectamente y nadie le enseno. A Jesus tu le das un candie envuelto en un papel y lo desenvuelve, el otro no." Rolly's mother also volunteered her viewpoint that her child is intelligent: Claudia: "What makes you think that he is smart?" 166

Rolly's mother: "The things he does, he knows things that a normal child would know and the skills that he has like doing puzzles, if he's shown to do something one time and he'll pick it up like that. He has been learning to do ones, number one, so he did number one at school, pages of number one, he came home and did ones on the wall ... one time he was taught to do circles and he came home and was doing circles and it was on the wall... he picks up things like that... and with videos I see him, he watches a video, he understands the fiinny parts, he knows when is a scary part. " Autism can represent a dance between normality and deficiency: Jesus' father: "Absolutely, he's intelligent, because there are things that his twin can't do that he can... If it weren't for his occasional changes of temperament and getting aggressive, he could live a normal life... Jesus is super intelligent. " "Absolutamente, el es inteligente porque hay cosas que el otro nino [twin brother] no las puede hacer... Si no fuera porque a veces le cambia el caracter y se pone agresivo el pudiera llevar una vida normal... Jesus es super inteligente. "

Jesus' mother: "He knows how to open a lipstick, he can turn on the VCR, turn off the television... In other words, all those normal little things, sometimes he can do them and his brother can’t." "El sabe destapar un pinta labio, el sabe prender el VCR, sabe apagar el televisor.. o sea esas cosas son normales que a veces el las puede hacer como un nino normal y el otro no."

Sergio's mother: "My brother says, 'Sergio doesn't have anything [there's nothing wrong with him], he's an intelligent boy, he understands everything with me, he goes and closes the door, and he grabs the candy and eats it. ' And my brother will raise his voice with him, and he understands. " "Mi hermano dice: 'Sergio no tiene nada, el es un nino inteligente, conmigo el entiende todo, es un nino inteligente porque el va y cierra la puerta y coge los caramelos y se los come' y el (hermano] le habla fuerte y el entiende." 167

Daniel's mother: "Daniel is very polite, he says 'excuse me' if he spills the juice, and he cleans it up himself. He keeps everything in its place, he doesn't mess up the house; he's been tidy like that since he was little. One time I lost my keys and I told him, "Daniel, I've lost the keys, can you help me find them?" And he stopped and thought, like he had a radar on his head, and went right to where the keys were. " "Daniel es muy educado, me dice 'excuse me' si se le riega el jugo, y el mismo lo limpia. Mantiene todo en su lugar, no desarregla la casa, desde chiquito le ha gustado tener todo en su lugar, una vez se me perdieron las Haves y le dije 'Daniel se perdieron las Haves, hijo ayudame' el se para y como tiene un radar en su mente y va Justamente al lugar donde esta la Have. "

Gregorio's mother: "There is a part of my son's mind that is just incredible. He knows exactly when which TV shows are supposed to satrt, and he will watch a show from this time to that time, and when he sees it's over, he looks at the clock as if to say that he's going to start watching another show on another channel. " "En la mente de mi hijo hay una parte bien increible ... en cuestion de programas de television, el tiene un horario el mira de tal hora a tal hora un programa.... si el ve que se acaba, mira el reloj quiere decir que va a empezar a ver otra cosa en otro canal. " Children with autism have a physically normal appearence: Mario's mother: "There are times when he acts like he's normal, when he's serious and sitting down, and someone in off the street who doesn't know him wouldn't realize he's got a problem until he does one of his weird little moves, or laughs or tries to talk. But just to look at him, physically nothing shows." "Hay veces que el actua que parece normal, cuando esta serio y asentado tu no te das cuenta, en la calle las personas que no lo conocen no se dan cuenta hasta que el hace una de las de el o se rie o trata de hablar, pero en el fisico asi de verlo no luce. "

Gregorio's mother: "Physically, he's a healthy child, mentally, he's an autistic child." "El es un nino sano fisicamente, mentalmente el es un nino autista" 168

Daniel's mother: "He's a kid who is always well dressed and very fancy with his tie and everything: he has a suit to wear to weddings with his bow tie, he dresses like a normal person... Everyone believes he's normal." "El es un nino que siempre anda bien vestido y muy elegante con su corbata y todo, el tiene su suit de ir a bodas con su corbatica de gato (corbatin), el se mantiene como una persona normal... todo el mundo cree que el es una persona normal. " "He began to masturbate him self

Youngsters with autism, as other youngsters, reach puberty. However, parents become concerned with the way they display their sexual behavior. The realization that sexuality has arrived might be a difficult issue for a parent of a child with autism. "Sexuality maturation" for their normal children is less noticeable; contrariwise, children with autism may exhibit certain aspects of their sexual maturation, a situation that distresses the parents:

Person's mother: "When my son hit 11 years old, it was weird, he began to develop (sexually) before the others, even before his older brother who is three years older. Gerson had pubic hair; I found one little hair right here, and then he began to develop a mustache. I was horrified, I wanted to die; for me that was something... It took me completely by surprise. I noticed it one day when I was giving him a bath, washing him with my bare hands as I always had. When I saw that first pubic hair, I began to wear gloves [to bathe him], thinking, he doesn't realize what's happening to him. It's different with my healthy (normal) sons, they're going through all the hormonal changes, but him, I don't know... An erection, whatever, and that would just make me sick [that she might unwittingly cause him an erection]. "Cuando mi hijo empezo a crecer que agarro los 11 anos, cosa extraha que empezo a desarrollarse primero que los otros que el mayor que le 169

lleva 3 anos, [Gerson] echo vello pubico, un vellito por aqui y a hecharse un bigote, yo me horrorize, yo me queria morir, eso fue para mi algo, me agarro de sorpresa... tanto que yo note cuando lo bane yo se que lo banaba con mis manos normalmente, cuando vi el primer pelo pubico yo comenze a ponerme guantes, porque dije el no sabe distinguir en cambio son ninos sanos, estan en el proceso hormonal el no se... una ereccion cualquier tipo de cosa y eso me va a enfermar a mi." Mothers, especially find it difficult to deal with such behaviors: Person's mother: "I know it's a normal thing, that sexuality is normal and it's a normal process. I know he can't channel [or control] his sexuality, he will never have a normal relationship, but it was terrible for me to learn to deal with his emerging sexual maturity." "Yo se que es una cosa normal, que la sexualidad es normal y que estamos en un proceso normal, se que el no puede canalizar la sexualidad, nunca va a tener una companera normal pero era terrible para mi enfrentarme a eso."

Mario's mother: "Two years ago, he hit puberty, with the [typical] sexual desperation, but not in a normal way like other boys, looking for girls, no no. When he began feeling the sensations that were changing his body, he would lay down face down and tried to, you know, masturbate that way. At first all he wanted to do was throw himself down on the sofa, the floor, anywhere, but then little by little I kept telling him, 'you don't do that here,... because you'll be out in front of the whole world throwing yourself down anywhere', and he's more or less started controlling himself. " "Ya dos anos atras comenzo con la pubertad con el desespero del sexo pero no normalmente como otro nino de buscar ninas, no, El como que sintiera sensaciones que le cambiaran su cuerpo y el se acostaba boca abajo y trataba de tu sabes, masturbarse de esa manera, al principio lo unico que queria era tirarse en el sofa, en el piso, en todos lados pero despues poquito a poco le fui diciendo que eso no se hace aqui... como vas a estar ahi delante de todo el mundo tirandote, mas o menos en eso se ha controlado" 170

Gerson's mother: .... "He just had nocturnal emissions, you understand [wet dreams], he got wet and all that... He keeps looking for ways to go to his room to lay down face down, to touch himself with the pillow...And then my daughter sees him in his room, and says, 'Mommy, Gerson is in his bed face down', and he hears her voice, or one of the other kids', or mine, and he gets up and leaves, so he's learning. " "El empezo a tocarse y se ponia la almohada y cosas asi..". "A el simplemente le daban emisiones nocturnas, tu me entiendes, que se mojaba y eso ... el busca la manera para ir al cuarto a acostarse boca abajo, de tocarse con la almohada ... y entonces mi hija ve al nino que se va al cuarto y dice 'mami Gerson esta acostado boca abajo,' no mas el oye la voz de uno de mis hijos o la mia y se levanta y se va, entonces el aprendio."

Daniel's mother: "Recently Daniel has begun to masturbate, and my mother was telling me that maybe it's a premature development, because he's only 11." "Daniel ultimamente comenzo a masturbarse y entonces mi mama me estaba diciendo que puede ser un desarrollo prematuro porque el nino apenas tiene 11 anos."

Sergio's mother: "The time has finally come when he's maturing [sexually], and he'll go lay down and touch himself there. I'm worried about that too, because I see him doing it. " "Ya llego el momento que esta un poco desarrollado y se acuesta y se toca ahi. Eso tambien me tiene preocupada porque yo lo veo con eso."

Gregorio's mother: "When I began to realize that Gregorio was trying, like, to touch his private parts, that was a critical moment for me, because I'd raised my other two boys without ever having had to deal with that, and having to deal with Gregorio, I said, 'my God, it can't be that those kids do that too'. " "Cuando yo empece a darme cuenta que Gregorio estaba como tratando de tocar sus partes intimas y eso fue una cosa bien fuerte para mi porque yo habia criado a mis otros dos hijos y nunca estuve en este punto de sus partes privadas y al tener que tratar a Gregorio yo decia Dios mio no puede ser que estos muchachitos tengan sus cosas tambien. " 171

Parents react differently and use different techniques to discourage them from displaying their sexual behavior, and to teach them how to cope with it: Gerson*s mother: "When he began to try to touch himself when he was alone, and all that, from then on I began something that has cost me a lot at bed time. I always laid him down on the sofa, and I'd lay down on the other one until he fell asleep, and then I'd carry him up to bed, but then I had no time [for myself], it didn't leave me any time." "Como el buscaba la manera cuando el estaba solo de tocarse y demas, desde entonces yo comenze algo que me ha costado muchisimo a la hora de dormir, siempre lo acostaba en el sofa y yo en el otro sofa, el nino acababa durmiendose en el sofa y de ahi lo cargaba y lo ponia en su cama entonces no tenia tiempo, no le daba tiempo."

Daniel's mother: "So I began to ask other mothers... and they told me that their sons were up against the bed, or against the furniture, and then they told me that I didn't need to be ashamed of him for that, but to teach him to do it in private places when he was alone, like in the bathroom or covered up in bed. So then, so he wouldn't be thinking bad things, I put him in occupational therapy, it fills up his time so he doesn't have so much time to think about sex. " "Entonces le he preguntado a otras madres .... y me dijo que el nino de ella estaba contra la cama o contra el mueble ... entonces me dijeron que yo no tenia que avergozar al nino sino ensenarle que se hace en lugares privados como en el bano o en su cama tapado ... entonces para que no este pensando cosas malas le doy terapia ocupacional, que la terapia ocupacional contraresta el tiempo que este pensando en sexo."

Sergio's mother: "I told the doctor, and he told me to let him alone, because it's a natural thing for him, and to teach him to go and look for someplace private to do it. " "Yo le dije al medico y el medico me ha dicho que lo deje asi porque eso es una cosa natural que busqué la manera de que el vaya y lo haga en una parte oculta." 172

Gregorio's mother: "[At first], it was something I couldn't tell anyone, so I had to keep my mouth shut about it; it would have been too much like stepping out of line, that's something part of my son's privacy, so it's something I will keep just between him and me. " "Whenever he went to bed, he would start rubbing his private parts and I would say, enough of that, go to sleep. So he had this idea in his head [masturbation], and I saw he would go to the bathroom, so then I said. Look, come here, what are you doing?, and he would slam the door in my face, and I'd say. Don't do that Gregorio, I'll spank you. And he would say, UHHmmmmmm, in his language. I don't know why he started talking, but one day when I started thinking about it, I thought, you know, if I keep interrupting him every time I catch him doing that, one of these days he's going to get very angry with me or violent, better if I just leave him alone. " "[Al principio] eso fue una cosa que yo a nadie se lo podia decir pues yo tenia que estar callada porque yo decia que hago con comentar, con hablar porque entonces eso es como irme fuera de sitio, de linea porque si eso es la privacidad de mi hijo pues va a ser para el y para mi. " "Siempre que estaba acostado le daba por estarse sobando sus partes y yo decia 'que paso con eso, ya quieto' entonces como que ya tenia [el] esa idea y yo veia que el se metia al bano y yo decia 'mira ven aca que es lo que tu haces?' siempre tirandome la puerta del bano y yo digo pero no Gregorio, mami te pega "uhmmmm [decia Gregorio] y en su lenguaje que me dijo, no se porque el se pone a hablar pero llego un dia en el que yo me puse a pensar, yo dije si esto lo va a perjudicar que cuando yo lo vea y lo intermmpa, lo voy a poner rabioso o muy violento, es mejor que yo lo deje como esta. " Some parents have not yet had to face the sexual maturation of their children with autism, but reveal their trepidations on the subject: Rolly's mother: "Even puberty scares me because you hear so many stories; children like these getting pregnant or having children. " 173

SUMMARY:

Chapter six "They are children too" is the third common theme in this

study. Parents reminds us of the child within their children regardless of their handicap. This chapter captures the parent's stories about the reconstruction of

"normality" in from a parental perspective. Children's skills are viewed from a cultural and developmental perspective, placing emphasis on the strengths and the abilities to children with autism. Parents advocate for the uniqueness of the disorder in comparison to other forms of retardation where the deficits are more uniform. Parents of children with autism in this chapter talk about their child's uniqueness and the interrelation of the child's individual strengths with the disorder of autism.

This chapter is divided into four categories; "He has progressed, " "they like to play, " "he is intelligent, "and "He began to masturbate himself. "

In "He has progressed", parents constructed the developmental perspective of the disorder to be seen not as a static disorder, but rather as progressive in terms of skills. Parents in this study have children from three to fifteen years old. Their stories described their children's progress from an autistic perspective. Children with autism progressed in terms of using the toilet, increasing communication skills, understanding, behavior, identification, 174

bilingualism, and memory. Parents reported that when their children were

younger they were more difficult to handle but as time goes by they get to know

their children and have been able to change some of their behaviors and teach

them some skills. Communication is viewed from a child's autistic perspective.

Some children can make progress and understand others; such understanding is often bilingual in character. Mothers observed that when their children were younger they did not understand them but as time went by communication improved. Language is not spontaneous, yet some children can communicate their needs. Most mothers mentioned that their children understand both languages (Spanish and English) and some speak using words in both languages.

Communication between mother and child was more developed than between child and other family member. Parents added that children with autism might understand more than they can express and what the parents think they understand. Progress is also viewed holistically terms of developmental milestones; some mothers have noticed that their child's mood has changed and they call it "teenager's changes. " They have also noticed maturational changes in the voice tone.

In "They like to play, " parents talk about their child's ability to engag with others and to be hugged, touched, and tickled like any other child. Parents 175

talk about a rapprochement that exists between them and their children. They

get to know their child's inner world, the world of the child and the world of the

autistic. The expression of feelings in children with autism was described here

and reconstructed from an autistic perspective; children with autism, like other

children like to play, to be hugged, to kiss, to caress; they are romantic, happy,

show affection, they also cry and show sadness and are able to identify others'

feelings and states of emotion. Some parents mentioned that their children with autism live in a children's world because there are some things that happen in the world that are not important to them.

"He is intelligent" describes the parental view of "normalcy" in spite of the disability. Children with autism do not have uniform mental retardation.

Parents spoke about their experiences and their perspectives of their children’s behaviors that they consider "normal". Parents spoke about the knowledge some children have of time, of themselves, memory, good fine motor skills, and some

"home skills" such as turning on the VCR, the TV, etc. Parents described the holistic aspects of their children in terms of autism and child development.

Physically, children with autism have a normal appearance and in some settings might look normal. 176

"He began to masturbate himself" is a topic that was somewhat difficult

for some parents to talk about it; the section describes their experiences.

Sexuality was an issue that caught many parents by surprise and they had to deal

with it. Parents found it most difficult to deal with such behaviors because their

children displayed sexual behaviors in front of others and in public places.

Mothers noticed sexual development "earlier" because they were in contact with their child's body in that they had to bathe and dress their children. Because of the proximity that parents have with their children, physical changes of children was the first clue that they had begun to physically mature. Sexual development was apparently not an overriding concern for the fathers interviewed. Parents expressed their views of sexuality from a cultural perspective. Finally, parents describe their experiences with techniques they use to decrease sexual manifestations. CHAPTER Vn

AFTER WE ARE GONE

"The hardest thing? I think the future, it is scary. We wont' know what is gonna happen, the hardest thing for me to deal with him, if something happens to me, who is going to take care of him (Roily's mother). "

Translation: "Lo mas dificil [duro]? Creo qua el futuro, me asusta. No sabemos que va a pasar, la cosa mas dura para mi, para lidiar con el, es si algo me pasa a mi quien se va a encargar de mi hijo?" .

INTRODUCTION This chapter deals with the fourth theme that emerged in this research;

"After we are gone," reflects the future: "autism forever." The theme articulates the concerns of what might happen to the child with autism after parents get older, after they are gone, what parents want for their children in the future, and their fears of potentialities such as institutionalization. They also talk about their construction of hope and meaning.

177 178

"It is forever"

Parents bespoke their concerns of their children's life long disorder, their

worries about what might happen to the child after they are gone and again, as

well as the difficulties of envisioning the future with a child who would always

be afflicted by autism;

Gregorio’s mother: "He will always be autistic, always, always... They say there's no cure for this, that's what hurts more than anything, because if it had been an illness [that was curable], you would say, okay. " "El sigue con eso [autismo], el siempre lo va a tener ahi, siempre lo va a tener ahi, siempre, siempre... porque dicen que no hay cura para eso ... eso es lo que mas duele, eso es lo que mas duele porque si hubiera sido una enfermedad uno dice bueno."

Person's father: "When there's not even a hope that it might be a transitory condition, well that makes it harder. It's like someone who's sick or who had an accident, or people in the hospital, you know that with time they're going to get better, but when you know the condition is forever, you worry more, it catches you at any odd moment... You can't detach that from the rest of your life. " "Y cuando no hay por lo menos una esperanza de una cuestion que es transitoria mas todavia es mas duro. Es como alguien que esta enfermo o que tuvo un accidente o personas que estan en el hospital tu sabes que con el tiempo se van a mejorar pero cuando tu sabes que la cosa es para largo [duradera], la preocupacion es mayor, afecta en todo momento... No puedes desligar eso del resto de tu vida. "

Rolly's mother: "I know that there is no cure for this. "

Parents say that the concern about the future it is something that it is always with you: 179

Gregorio's mother: "I don't think that any mother could leave this confinement, the confinement of knowing that you have an autistic child, that... the trap of knowing what you know, that this is for life. "Yo no creo que ninguna madre puede salir de ese encierro, el encierro de saber que uno tiene ese nino que es autista, que es autista que ... el encierro de uno es que uno sabe que uno sabe que eso es de por vida"

Person's mother: "Even now, no one can say my son will be cured, as if it were some other kind of illness" "Hasta el momento no se sabe tanto como para decir mi hijo se va a curar como si fuera otro tipo de enfermedad. " Autism is compared with other disabilities that are visible and probably easier for the family. Autism's symptons make it a difficult disorder to live with: Person's mother: "If I could have chosen between my child being autistic or having Down's syndrome or spina bifida, I would have preferred anything else, because I think, okay, maybe I'm mistaken, because I'm so selfish. My selfishness is always the same, because I think, when he doesn't have me, they'll treat him bad, and because of his low IQ, he can't protect himself. Really, that's my selfishness, that I think, well, maybe he'd suffer more in a wheelchair with spina bifida, because then he would be aware of all the things he's lost in his life because of being there [in a wheelchair] with his good mind. But I always say what good is it to have a healthy body, what does it matter to him, because I accept him as he is, what does it matter?" "Si hubiera podido escoger en que mi hijo fuera autista o tuviera el Down's syndrome o spina bifida hubiera preferido otra cosa porque pienso, que bueno quizas estoy equivocada porque soy tan egoista, el egoismo mio es el mismo siempre de que cuando no me tenga me lo traten mal y que por la intelectualidad tan baja que tiene no pueda protegerse, realmente ese es mi egoismo, que pienso que quizas sufriria mas en una silla de ruedas con spina bifida porque si esta sabiendo todas las cosas que se ha perdido en la vida por esta ahi con su mente buena pero yo siempre digo de que vale el cuerpo sano, de que le vale a el porque yo lo acepto como es, de que le vale?" 180

"The future is scary"

The future represents a looming worry: Who will take care of the child when parents get older or when parents are gone?

Rolly's mother: "The hardest thing? I think the future, it is scary. We don't know what is gonna happen, the hardest thing for me to deal with him is if something happens to me, who is gonna take care of my child? That's been a real big question, you know a real big issue in my life because the situation with my husband hasn't been the greatest and I don't have anybody else ... I mean, it is hard when you have no one."

Gregorio's mother: "When you start getting older and losing strength, not because you don't understand that your son is just like that, but because of your age... You're not going to be with them all their lives." "A la edad que uno va entrando como que uno va perdiendo fuerza no porque uno no lo entiende al nino de que es asi sino por la edad de uno... uno no va a estar toda la vida con ellos. "

Daniel’s mother: "I worry about the future a lot, because I don't know where these kids will live. They tell me that even now there are towns where they live, but what worries me the most is all the corruption that exists in such places, and then that just kills me when I start to think about that, and I can't even sleep at night, because I know that Daniel can't take care of himself. " "Me preocupa [el futuro] cantidad porque estos ninos yo no se a donde vaya a vivir el. Hasta ahora me dicen que aqui hay unos pueblos donde viven ellos pero a mi lo que mas me preocupa es la corrupcion que existe hoy en dia en estos centros y entonces eso me mata que cuando me pongo a pensar y reaccionar en esto entonces no puedo ni dormir porque me da mucha incertidumbre saber que Daniel no se puede defender. "

Person's mother: "The future is out there, waiting. The teacher, the social worker, people who come in to help you out always say, don't think about it, don't dwell on the future, but you can't do that. You have 181

to think about it, and sometimes from thinking about the negative you can find something positive. I went through a time when I didn't want to think about what would happen when he hit puberty, and then that time hit me anyway, in the blink of an eye... Likewise, I have to think about when he turns 21 and they won't take him at the school any more. There he'll be [without the school support], and every day will bring new challenges to face, and at the same time, the years keep rolling on. Inevitably there will come a time when I won't be here to take care of him. " "Hay esta el futuro presente que a uno siempre el maestro o la trabajadora social o la gente que te ayuda te dice no pienses en el futuro, pero es mentira hay que pensar y a veces de lo negativo uno saca algo positivo, porque yo tuve un tiempo que no queria pensar en el tiempo que le llegara la pubertad del nino, y me llego como un abrir y cerrar de ojos... asi mismo yo estoy que a los 21 anos cuando el no vaya a un colegio, estan ahi y cada dia son nuevos retos que hacer y al mismo tiempo estan los anos que vienen arriba... Irremediablemente va a llegar una epoca en que yo no voy a estar para el quiera o no quiera. " Parents feel that their concern is quite different because other children will be independent but children with autism will not: Claudia: "Don't you have the same concern about your other child too, let's say if something happens to you who is going to take care of him?" Rolly's mother: "Ummm, that is a concern for all my children but mostly him because he can't take care of himself. It is different for him and different than a regular child, I know [that my other child] will be able to get a job and get an apartment and cook and clean for himself, I don’t know if Roily will, I don't know if Roily will have the capacity, I don't know if he'll be able to do that for himself. It is scary! "

Daniel's mother: "Not just me, but all parents worry, what will happen to this child when I die, where will he go? what will become of him? It's not the same when you have other kids who already know what they want to do and can decide for themselves what they want to do with their lives; but these children [autistic] don’t have that option." "Y no solo la preocupacion mia sino de todos los padres, que sera de este nino cuando uno fallezca, a donde va a dar? que sera de el? No es lo 182

mismo cuando uno tiene otros hijos que ya saben que es lo que quieren hacer y pueden decidir su vida por si mismos pero estos ninos no. "

Gerson's mother: "Because all this physical strength and vigor that he has will not be the least use to him in protecting him from the day when he doesn't have me any more, and that day will inevitably come. " "Porque toda esa salud fisica que tenga no le va a servir nada para protegerse el dia que no me tenga, y ese dia irremediablemente va a llegar."

Some have thought that they want God to take their children before they are

gone. Parents believe that nobody will treat them like they do and will give their

children the love they need: Sergio's mother: "I beg my God, that's one of those stages of my life for which I ask His help, that before... It's hard to say to be strong, that before God ends my life that He takes him first, that would give me some satisfaction in life. Because he's my son, and I love him, but it's different, it shouldn't be that I die and he still has to live." "Yo le pido a mi Dios, esa es una de las etapas que yo le pedi a Dios en la vida, que antes que ... es duro decir para ser uno fuerte, que antes que Dios me quite la vida que me lo quite a el primero, me llevaria una satisfaccion en la vida. Porque es mi hijo y yo lo cuido, pero es diferente que yo llegara a fallecer y el quede vivo. "

Gerson's mother: "There are times when what I would like is that he would die with me, or before me. " "Hay veces que lo que quisiera es que se muera conmigo o que se muera primero que yo. " Another concern related to the future is being alone when other family members cannot take care of the child and the care of the child with autism will be only their responsibility: 183

Gregorio's mother: "Claudia, I want to stay with him because my othe kids can go and make their own life, they can get married, have their own family, and I want to stay with him. " Yo, Claudia, quiero seguir con el porque a lo mejor mis otros hijos cogen, hacen su vida, se van, se casan, tienen su familia y quiero seguir con esto. "

Mario's mother: "I worry about the future, where will Mario go when I die, when I fall in bed, when I can't give him everything, what will become of him, who will take care of him? My other kids won't take him on, or his father, where will he go?" "Del futuro [le preocupa] donde va a ir Mario el dia que yo faite, el dia que yo caiga a cama, el dia que yo no pueda darle todo, que va a ser de el?, donde va a ir, quien se va a ocupar de el. Los hijos no se van a ocupar de el, su padre tampoco, donde va a ir?." Trying to avoid thinking about the future might be a way to deal with it: Gregorio's mother: "But in the future, I don't know. I think, the years are passing by. I'm getting older, he's still young... I try not to think of the future, for me or for him. " "Pero en el futuro, no se yo pienso que los afios van pasando para mi en lo que voy entrando a cierta edad, el se va haciendo un joven y eso es lo que no trato de pensar en el futuro, por mi, por el. " "Nunca me gusta estar pendiente a lo que viene adelante porque uno dice hoy uno esta vivo pero manana no se sabe. " "An institution is not the same"

Parents fear institutions for the future of their children. Again their concern is related to how the child will be taken care of: Sergio's mother: "Because if you leave him in an institution, it's never the same, nor even to leave him with another member of the family. " "Porque si lo deja uno en una institucion nunca es igual, a un familiar tampoco." 184

Rolly's mother: "What is going to happen with your child?, is the state going to take over and put him in a home? or what is going to happen to him?."

On the other, hand placement can be an alternative when the child's mother is no longer there: Mario's mother: "From now on, I wanted to look for something for him, for the future, but it hasn't been possible, no one wants to help me. " "Yo queria desde ahora buscarle un destino para el para el dia de manana pero no ha sido posible, nadie me quiere ayudar. " A mother talks about cultural views of placing children in institutions: Person's mother: "Well, I think that a child in a normal American family is seen in a more positive light than when the child or any member of the family is incapacitated with whatever it might be. Sometimes they can assimilate better when the time comes to remove that person from the house, I think they resign themselves in knowing that they will be okay, that this way the parents as much as the kids or other members of the family will have more time for their own lives, to do tilings. And at the same time they assimilate that this is normal, that they have no reason to feel guilty. And I, for example, well, I know all that, but even so, I don't know if it's personal or cultural, I can't deal with it, I can't think about it; in my case, I have preferred to sacrifice certain things in my life [to keep my son with me]." "Bueno yo creo que un nino en una familia Americana normal ven mas positivo de que cuando un nino o cualquier miembro de la familia tenga una incapacidad sea cual sea, a veces pueden asimilar mejor que llegue el momento de remover esta persona de la casa, yo creo que se conforman con saber que van a estar bien, se conforman con saber que asi de esta manera tanto los padres como los hijos o miembros de la familia van a tener mas tiempo para sus vidas, para hacer cosas y al mismo tiempo asimilan que eso es normal que no hay porque sentirse culpable y yo por ejemplo se todo eso sin embargo no se si es algo personal o algo cultural, no lo puedo afrontar, he preferido en mi caso sacrificar ciertas cosas mias." 185

Roily's mother: "I won't abandon him, that is another big issue that I spoke to other mothers about, is that a lot of people, the Hispanics don't do this, but the other culture they will take their child and lock them up and put them in a home. I don't know of us the Hispanic people we can't do that, even our grandparents, they are sick and old and they stay home and they die at home, you won't put them in a home until ... we can't see that, he will be with me until I am not here. " Parents talk about their ideas of institutionalization: Gregorio's mother: "Because they say here, the easiest thing is to put him in an institution, you can do that, but I can't. He's not a little cat or a bird that you can say, I don't want this any more, take it, it's a gift. Because what happens in every family that has experienced this is that the only people who understand him are those who have been at his side [all his life], like your kids or a friend. " "Porque dicen, aqui lo mas facil es que hay una institucion y tu lo entregas, no puedes y yo no, eso no es un gatico o un pajarito que uno dice no lo quiero, toma te lo regalo, porque lo que uno ha pasado con ellos en cada familia que lo ha pasado solamente lo entiende los que estan al lado de uno que son los hijos o una amiga. "

But their major fear is if somebody else will mistreat their children and their child with autism will not be able to express it: Person's mother: "I can't accept that the day will come when he will have a problem, crying, and someone will shut him away thinking he's crazy; I can't accept that no one will understand him, what capacity he has to develop himself, but he can’t express it, shut up in his own little world suffering, and he has to suffer in silence. That makes me furious, it scares me. I tell you in all honesty that the time will come when you'll say I'm crazy. Maybe I verbalize it, but deep down inside I see the day coming when I might do things adequately [and no more], coldly like the inside of a popsicle; on that day, the best thing is to put him in a more appropriate place. " "Es lo que yo no puedo aceptar que el dia que llegue, que este en estas situaciones, llorando, que gente lo amarren, que el tenga rabia, que nadie lo entienda que quien sabe cuanta capacidad pueda desarrollar pero no la 186

pueda expresar, metido en su mundo que sufra y tenga que sufrir callado. Y eso me produce rabia, me produce miedo, me produce de todo, es lo que te digo sinceramente que ha llegado el momento que tu diras que estoy loca. Quizas lo verbalizo y en el fondo el dia que me llegue el momento hago las cosas adecuadamente, friamente dentro de lo posible, lo mejor es dejarlo en el lugar mas apropriado. " Institutions can be a difficult decision for a family, but sometimes family members suggest it as a solution: Mario's mother: "Mario has pushed her [his niece], and pulled her hair... My second son is more nervous, and doesn't like to leave his kids here... He says, yes, I understand that Mario is sick, but a child like that should be in an institution, not in a family, because he's a danger. " "Mario ha empujado a la nina [su sobrina] y le ha tirado el pelo... El segundo hijo es mas nervioso y no le gusta dejar los ninos aqui ... dice que si yo entiendo que Mario esta enfermo pero un nino asi debe de estar en una institucion, no en la familia porque es un peligro" Feeling desperate with the situation can make parents seek institutionalization: Person's father: "She [the mother] has asked [about institutions] because the same frustration makes her think about one of those places. But I know her very well, they could offer her, other places have offered, but she starts watching those programs and then starts thinking that the same thing could happen to her child, and she will never, never put her child in one of those places... The only way I think she would do it is if she can keep open the option of bringing him home to see him every once in awhile" "Ella ha solicitado porque a veces la misma fustracion la hace pensar en un sitio de esos pero ella yo la conozco a ella le pueden ofrecer, aqui mismo le han ofrecido sitios pero ella es una persona que se afecta con todo, ella se pone a ver esos programas y enseguida que tambien puede pasar lo mismo y que ella nunca, nunca va a meter el nino en un sitio de esos... La unica forma que yo pienso que ella lo meteria en un sitio de esos es que le quedara a la vuelta de la casa que pudiera verlo cada rato. " 187

When the individual with autism reaches the age of 21, parents become concerned about the specificities of dealing with them 24 hours a day; Person's father: "Fortunately, she [mama] has the advantage of the school, but that will end, they stop taking them once they turn 21, and she will never put him in one of those places, no matter what happens. " "Afortunadamente tiene [ella] la ventaja de la escuela pero eso ya se acaba, las escuelas se acaban despues de 21 anos y ella nunca lo va a dejar en un sitio de esos, nada que va. " Dealing with an individual with autism who has serious behavioral difficulties, and being practically alone dealing with indecisions of placement versus keeping him in the house also present difficulties. Parents present a different view about placing their own child. The following is a dialogue between two parents regarding placing their child: Person's mother: "Someday, Person will turn 20, and I won't even realize. What most concerns me... is that time is flying and I am afraid of being alone with my son and making decisions... The other day, Person got a little silly, and I think any day now he'll start pushing unexpectedly or acting dumb; and it's like a chain that you keep making until the critical moment comes. And at that moment, I need him [my husband], or I don't know, my son, or my sister, somebody." "De un dia a otro. Person va a tener 20 anos y no me voy a dar cuenta, a mi lo que mas me preocupa ... es que el tiempo vuela y tengo el temor de estar sola con el nino y de tomar decisiones ... el otro dia Person se puso un poco majadero y yo digo cualquier dia de estos se destapa otra vez a empujar o hacer sus socas y es como una cadena que vas haciendo hasta llegar el momento y ese momento yo lo necesito a el o no se, a mi hijo, necesito a mi hermana a alguien. "

Person's father: "Even if he knocks the house down around you, you'll never get rid of him. " 188

"Aunque te tumbe la casa tu nunca lo vas a sacar. "

Gerson's mother: "No, I know someday I'm going to have to do it, because he won't be in the house all the time, the girl will return a young woman, or the boy will simply not be able to live with him. As a human being, I know there will come a time when, it's not that I'll get tired of taking care of him, but rather that right now I know I can [and there may come a time when I'm physically unable]. To think that one is exposed to whatever, like two years ago, he almost knocked out a wall of the downstairs bathroom; what would I do if he did that now? I know there will come a time when I can't handle him any more. " "No, yo se que un dia voy a tener que hacerlo porque el no va a estar todo el tiempo en la casa, la nina se va a volver una senorita o el nino no se va a poder vivir simplemente con el. Uno como ser humano llega un momento que no es que me voy a cansar de cuidarlo, lo que pasa es que ahora yo se que puedo. Pensar que uno esta expuesto a cualquier cosa como hace dos anos que casi echo una pared del bano abajo, que voy hacer ahora? pero yo se que va a llegar un momento en que yo no voy a poder."

It seems very painful and hard to make the decision of placing a child in an institutution: Gerson's mother: "It bothered me, thinking that he should go someplace. I said to my husband that I needed him to make that decision for me, and one of these days when I have to have my son in some other place, I would like to have a strong, decisive person at my side to make that decision for me, because I know that it will be completely impossible for me to make that decision. " "Me preocupaba, pensaba que el nino deberia ir a algun lugar, yo le decia [a mi esposo] que yo necesitaba que el decidiera por mi y va a ser uno el dia que yo tenga que tener el nino en algun lugar yo quisiera tener a una persona a mi lado de mucho caracter y de mucha decision y que décida por mi porque yo se que voy a estar imposibilitada de tomar la decision. " 189

A mother describes her experience in dealing with emergency services and a temporary residential institution; she complains about the lack of sensitivity of medical and psychotherapeutic personnel when dealing with children who are autistic: Mario's mother: "When Mario got aggressive, he destroyed the house, he threw everything: the microwave, pots, plates, glasses. We tried to calm him down... [the respite care worker] called 911, the police came and shackled his hands and feet [to the table?], but he kept jumping around, table and all. They couldn't overcome him, because he kept fighting with them... They started to give him Inderel, and then they took him to a psychiatric clinic... That is the biggest disaster a country can have, you find all the derelicts there: kids addicted to drugs, alcoholics, would-be murderers, suicide attempts. The first night there, they filled him full of medications (drugs)... They had him chained hand and foot, and they drugged him with Haldol, they had him drugged up all the time. They let go of him [by accident] and he went running down the halls punching the nurses. It was horrible, horrible. When he was with us, he was fine (quiet), but let him make the least little ruckus, and along came running the nurses to tie him down and drug him up. He was there something like nine weeks, chained hand and foot; there, you can see the scars on his feet in these pictures. So then finally one day, I got angry and told the nurse, "please don't put him in that room any more, and don't put the chains on him any more," and she told me, "he can kill you. " I started fighting right then to get him out. That stupid doctor who didn't know anything about autism told me that to get him out I had to have a hospital bed put in my home so I could keep him tied up and drugged up [at home], because he was "dangerous." I told him he's not dangerous or anything, it's just that you can't treat him the way you've been treating him. " "Cuando Mario se puso agresivo me acabo la casa, todo lo tiro; microwave, ollas, platos, vasos.... tratamos de aguantarlo... [respite care worker] llamo al 911, vino la policia... lo amarraron de pies y manos y brincaba con mesa y todo, no podia soltarlo porque se fajaba con uno... a el le empezaron a dar Inderel... entonces de ahi se lo llevaron a una 190

clinica psiquiatrica... eso es lo mas desastre que puede tener una nacion, ahi van los ninos que son drogadictos, alcoholicos, que han tratado de matar a alguien, que han tratado de suicidarse.., La primer noche me lo llenaron de pastas... lo tenian amarrado con cadenas de pies y manos y le metian Haldol, drogado todo el tiempo. Apenas lo soltaban, salia corriendo y le daba pinas (punos) a las enfermeras, eso era horrible, horrible. Cuando estaba con nosotras estaba tranquilo pero apenas hacia la minima bulla, venian las enfermeras corriendo a amarrarlo y a drogarlo...estuvo ahi como nueve semanas, amarrado de pies y manos, ahi estan en las fotos las llagas en los pies. Entonces hasta que un dia yo me altere y le dije a la nursa que por favor no se metiera mas al cuarto y que no me lo amarrara mas. Entonces ella me dijo 'te puede matar'... empeze a 'peliar' para sacario.. el estupido medico ese que no sabia nada de autismo me dijo que para sacario tenia que traer una cama de hospital [a la casa] para tenerlo amarrado y drogarlo porque el era "dangerous," le dije no es dangerous ni nada, es que no pueden tratarlo como lo tratan ustedes."

Hope and meaning

When children are young parents hope that their children will get better by a miracle cure. Parents also might believe that if they work hard enough their child will get better:

Mario's father: "I would like for him to be cured. " "Quisiera que el nino se curara. "

RollV-'s mother: "I hope that maybe there will be a miracle cure and he'll get better somehow. "

Daniel's mother: "It's my intention to keep helping him so that he can come out of this." "Ese es mi interes seguirlo ayudando para que saiga de eso. " Parents likewise hope for the "miracle" that they might live forever: 191

Gerson's mother: "I think if life were a fantasy, I'm a dreamer, I like to fantasize about the future so if life were... Taking care of him all his life, that he would have me to count on all his life, nothing else matters to me except to be with him, cleaning him up, feeding him, taking care of him. But unfortunately, life isn't like that, and some day he won't have me any more, and maybe he won't suffer, but I can't prevent it if he does." "Yo digo si la vida fuera una fantasia, yo soy una persona fantasiosa, si la vida fuera... cuidandolo toda la vida, que me tenga toda la vida, no me importaba nada, estar toda la vida limpiandolo, dandole la comida pero es que desgraciadamente la vida va a partir y no me va a tener y quizas el nino no sufra pero yo no puedo evitar sufrir. " God's intervention is another hope for those who have strong religious faith: Gregorio's mother: "Sometimes I think, soon we'll see a miracle fro God." "A veces digo de pronto un milagro de Dios. "

Jesus' father: "I believe in God very strongly, and I pray a lot. it helps me to pray, I tell him all my hopes [for my son], and I think with His help, my son can overcome this. " "Yo soy una persona que creo en Dios, por esa parte yo me siento muy conforme porque siento un alivio y deposito mis esperanzas con la ayuda de El mi nino pueda salir adelante. "

Roily's mother: "I think that prayers work."

Gregorio's mother: "They say faith moves mountains. " "Dicen que la fe mueve montahas." Hope and meaning might be related to how much the parents feel they are giving to their children: Roily's mother: I have to make sure that he gets the best education, learn the most he can, you know that whatever is due to him so when the day comes that I am not around that he can take care of himself. " 192

Jesus' father: "I think with education, like they give them in those special schools set up just for them, they can make progress also. My only hope is that one day they can overcome it [autism] and live a normal life. I am also of the opinion that the parents have to be very careful, they have to teach them the basics of daily home life. We need to "adapt" them them so in the future they can also be socialized into the community. " "Pienso que con una educacion, como se llevan a las escuelas especiales que existen para ellos, ellos puedan salir adelante tambien. Esas son mis unicas esperanzas de que algun dia puedan llegar a triunfar o a llegar a vivir como una persona normal, tambien tengo la opinion que los padres [parents] tambien deben de tener mucho cuidado, deben de ensenar por ejemplo las cosas basicas que se hacen en la casa en el diario vivir. Adaptarlos para que en el futuro tambien puedan socializarse con la comunidad. "

Hope and meaning take shape as the child progresses: Jesus'T ______I father: J.1_____ "In I»T„ the .1. not-so-distant . _____JÎ_.L ______.L C..A ftiture,______so I can continue to see his progress. I'm going to get [more] involved [in his life], because for me, honestly, if I look at it as a setback rather than an illness, well, to my way of thinking, it is a setback, not an illness." "En un futuro no muy lejano a medida que yo vaya viendo la prosperidad de el entonces me voy a ir envolviendo porque para mi sinceramente si lo miro como un retraso pero no como una enfermedad, bueno a mi manera de pensar es un retraso, no es una enfermedad."

Jesus' father: "I've seen a change... I think that in the future he will be a normal person because even though they say it's incurable, such people still have their own type of success. Yes, I hope they do succeed. Well, he's still a child and [already] he's not so, it's like the illness isn't as pronounced; he can develop himself in certain ways. " "He visto un cambio... yo creo que en le futuro va hacer una persona normal porque eso dicen que nunca se quita pero las personas prosperan sus modales. Si yo tengo la esperanza de que prosperen. Bueno aun es un nino y no es tan, como la enfermedad no es tan pesada pues el puede desenvolverse en ciertas cosas." 193

Roily's mother: "Hopefully he'll change, he will grow out of this and he will be able to live a good life, a productive life. Hopefully he will go to school or to college, I have seen it and I heard about it. " Hope requires work and patience and is seen within a family context: Jesus' father: "Maybe sometimes you live on hope, you have that hope that if you can just have the patience needed to deal with that child, then you can raise him and teach him, and he will understand more. You know, he is what he is, [but] he's also part of a family, a momma and daddy and him û and [of course] how that child turns out as he grows up, what kind of character he has, all depends on how his parents raise him. " "Tal vez algun dia uno vive de esperanzas, con esa esperanza si uno tiene la paciencia necesaria para ese nino pues al nino se le puede criar con paciencia y puede llegar a tener un mejor entendimiento porque eso el nino es lo que es, lo que es una familia, mama, papa, y segun mama y papa se traten, asi va a ser el crecimiento de ese hijo. " Acknowledging the future might hurt but always hope is there: Jesus' mother: "What bothers me is when I read about how they grow up, that doesn't interest me to know that; now I don't want to know if he'll be worse or what when he grows up. Yes, I'd like him to get better, it bothers me to know that tomorrow he might not talk to me, or he's not going to behave like sitting and carrying on a conversation, no, that doesn't interest me, because it hurts me, it depresses me. I prefer positive things because negative things bring me down. " "A mi lo que me molesta es cuando yo leo sobre como van a ser grandes, a mi no me interesa saber a mi me interesa saber ahora, hoy a mi no me interesa saber si mas grande peor o que. Si me gustaria que mejorara, a mi me molesta saber si manana no va hablarme o el no va a comportarse como, sentarse y conversar, no, no me interesa porque me hace dafio, me deprime ... Prefiero ... cosas positivas porque negativas me pone mal."

Roily's mother: "You hope that he does [progresses] but you don't know how severe his disability is, so you see progress I am thankful... I pray to God that if he is going to help me with this child, I am going to be able to to get him understand that part, he doesn't know where he is, he doesn't understand none of that, it doesn't mean anything to him like another person... I would want some day to see in him that he understands about 194

the world, understands why we are here, why he is the way he is. That's what my goal is, I want him to get a grasp of that, I want him to be able to understand that yes, he does have a problem. "

Parents get so attached to their children with autism that separating from them to

a place that they feel is not secure and safe for them becomes very difficult: Gerson's mother: "That is incredible, it's something like, you're tied to that person, tied even though at times you try to forget it momentarily... It's just that no one [else] can worry about him [like I do], not even he himself. " "Eso es increible, es algo que uno esta amarrado a esa persona, amarrado aunque a veces uno trate de olvidarse momentaneamente... es que nadie se puede preocupar por el mismo, ni el mismo. " SUMMARY:

Chapter seven "After we are gone" evokes the parent's concern about the

future. This chapter is divided into four categories; "It is forever, " "The future is scary, " "An institution is not the same, "and "Hope and meaning. "

"It is for ever" encapsulates the parent's concern that the disorder is forever. Parents have expressed throughout this research that taking care of a child with autism is like taking care of a baby all through life. There is a mixture of hope and pessimism. On one hand, every parent wants their child to be normal; on the other hand, knowing the manifestations of the disorder makes maintaining faith more difficult. Parents express their feelings of knowing the 195

autism is forever. They mention that thinking about the future it is always with

them.

In "The future is scary, " parents talk about their feelings about the future.

As they age, their children will be moving out and their energy will diminish.

Who will take care of their children? The fear of being alone with such

responsibility with no one who can help. Parents mention that their concern

about the future of their children with autism is different from their other

children because while normal children will be independent, children with autism

will always be of concern to their parents. The future is brought from a religious

perspective, parents praying to God to take their children first before they are

gone. Parents express concern because other family members cannot take care of

their children. They are alone in this country and their other children will have their own lives. Normal children will go on but parents cannot. Thus, the child with autism is their sole responsibility.

In "An institutions is not the same, "parents describe their views about institutions. If placed in an institution, it is feared that the child will not get the same quality or quantity care and the same degree of love. Parents fear that children will be mistreated and because they have autism they cannot talk about it. Parents also discuss their cultural views about institutions and what having 196

their children with them means to them. On the other hand, some families who

have children with serious behavioral difficulties see institutions as an option.

This idea is nurtured by family members whose lives are characterized by

burden and exhaustion. However, the decision to institutionalize can be painful

and it is always held as a possible solution. Parents see it as a faraway event.

"Hope and meaning" are what keep parents going. Hope that the child

will be cured either my magic or by being the recipient of some effective

treatment. Or, religious hope, may keep parents going: maybe God will cure

their children. Hope and meaning gets reconstructed as the child progresses.

Hope is always there no matter how old the children with autism become.

However, when the child is younger and has some skills, the hope tliat autism will go away is more tangible. Hope is a dance with reality and fantasy. CHAPTER Vffl

WE RECOMMEND

"Nosotros los padres... necesitamos como saber tratar al nino... necesitamos ayuda constante... mas servicios, servicios de consejeria... ayudarlos de una forma positiva y sobre todo hacerles quitar esa incertitumbre... de no hacerlos sentir culpables... los padres son la base, los capitanes del barco o sino el barco se hunde (Daniel's mother). "

Translation: "As parents we need to know how to deal with the child... We need constant help... more services, counseling... helping us in a positive sense and over all easing the uncertainty so that we don't feel guilty... The parents are the base, the captain of the ship, without them the ship would sink. "

INTRODUCTION The final theme gives closure to this research. Parents raise their voices here to let us know what they need, what has helped so far in dealing with their child with autism, and what their recommendations are.

197 198

"We need"

Parents often mentioned that they need more services but this need was

linked with the need of qualified professionals: Roily's mother: "We need doctors to educate themselves because my old pediatrician didn't know what autism was about, didn't know how to even recognize it, if he would of recognize it. Roily would have been in the system when he was a year in the half. "

Daniel's mother: "There should have been more services [available], and especially the people who work in those services should be more qualified. There are people who work in those places who don't know anything, who can't even act decent [with the handicapped people they work with]... They should give them more training." "Deberian haber mas servicios y sobre todo que las personas que trabajen en estos servicios debe de ser gente cualificada. Hay gente que se emplea en estos lugares y son gente que no tienen caracter ni tienen manera de comportarse a pesar... que le dan entrenamiento. "

Mario's mother: "Someone who was trained... professionals who understand him, who can tell when he's going to get aggressive." "Alguien que estuviese entrenado... profesionales que lo entiendan que sepa si el se va a poner agresivo. "

As discussed earlier, parents who have children with autism have a 24-hour job and very little time for themselves; they expressed the need for relief: Mario's mother: "[We need] a place where you can send him for a month; someplace where it's going to be like a vacation for him, and where I know he'll be treated right, so it will be like a vacation for me as well, you know what I mean, someplace like that. If only there were some program where you could say, okay, now summer’s coming, I can send him to camp for a month. " 199

"[necesitamos] un lugar donde lo pueda mandar un mes un lugar donde el va a estar como si tuviera sus vacaciones para yo coger las mias, tu me entiendes, tener algo asi... que haya un programa que uno dice ahora viene el verano y lo mando un mes de camping. " Parents complain about the lack of understanding of autism: Mario's mother: "Right now, wherever I send him, no one's going to know what autism is, no one." "Ahora mismo donde quiera que yo lo mande nadie va a saber lo que es el autismo, nadie."

Sergio's mother: "Many people don't know anything about autism, there's a great need for the government to make more information available about this to the public. " "Mucha gente desconoce sobre el autismo, hay necesidad que el gobiemo de mas informacion sobre esto." The need for more information includes the need to create awareness in other parents: Sergio's mother: "There are many mothers who don't know about it... and they say it's just that your kid doesn't want to talk. " "Hay muchas madres que desconocen... y dicen que es que su nino no quiere hablar. "

Jesus' mother: "There should be much more information [available], because there are many mothers that I see whose kids are disobedient, not because they want to be, but because they have a problem. What happens is that they're ignorant (or they don't know better), maybe they never took their kid to be re-evaluated, and they see their kid's behavior as misbehavior [rather than as a developmental problem], and so they spank him." "Deberia de haber mucha mas informacion porque hay muchas mamas que yo miro que los ninos son desobedientes, no porque ellos quieren sino porque tienen problemas. Lo que pasa es que son personas ignorantes que quizas nunca han hecho re-evaluar el nino y miran que lo que hace el nino es mal comportamiento y lo que hacen es que le pegan. " 200

Learning to deal with autism was another need that parents expressed in order to prevent the breakdown of marriages. Counseling and support was recommended as an avenue of prevention: Daniel's mother: "We need counseling services, services that can help the parents respond in a positive way [to the situation], and especially to know how to deal with the uncertainty, to know that we don't have to feel guilty, because many... We feel guilty and instead of looking at the problem and setting ourselves to helping the kids, well, instead, many parents become drug addicts [themselves] or alcoholics, and so the home begins to fall apart... It would be much better if the couple worked together towards the shared goal of helping their child make whatever progress he is capable of making. " "[Necesitamos] servicios de consejeria, por medio de esta consejeria ayudarlos [a los padres] a reaccionar de una manera positiva y sobre todo para saber quitarles esa incertidumbre por medio de no hacerlos sentir culpables, porque muchos... nos sentimos culpables y en vez de mirar el problema y dedicarnos a ayudar a los ninos pues entonces de que muchos [padres] se hacen drogadictos o se hacen alcoholicos y comienzan los rompimientos en los hogares... mas bien la pareja de esposos deben trabajar juntos por un mismo fm comun que es el de ayudar a salir adelante a ese nino y sacario adelante."

Roily's mother: "There should be support groups for parents, there should be groups for fathers, there should be support groups for siblings. "

Sergio's mother: "We need to know how to handle this problem that we have, more meetings [with counselors, support groups]... I've seen many marriages that break up as a result of having a child like this, mostly because the man doesn't understand that the child has a real problem, he's not just ill-behaved. The majority of marriages that I know of with autistic children end up with the husband leaving his wife because he believes the kid is like that because... because she doesn't know how to raise him right... I've seen it." "Necesitamos saber llevar este problema que tenemos, mas reuniones... he visto inclusive muchos matrimonios que a raiz de este problema que 201

tienen con los nines se han llegado a separar porque sobre todo el hombre no comprende que el nino es un problema que tiene y no es su comportamiento. La mayoria de los matrimonios que conozco con ninos con autismo entonces el padre deja la esposa porque cree que el nino es asi porque... no lo sabe educar... he visto. " And help for families and couples is necessary to prevent break ups: Roily's mother: "The hospital doesn't have a support group, no counseling. I think that's why families break up because we don't know how to deal with the problem, what do we do? who do we talk to? if you are not strong and you don't have a good solid foundation it's gone you don't have a foundation... our relationship [with husband] is going to help because of this [autism]."

Dealing with the school system can be time consuming, but you can be sucessful if you know how to negotiate the system: Claudia: "You mentioned the system, about you being after the Board of Education and that you didn't know where to go and what kind of gaps you found in the system?" Roily's mother: "That if you don't pursue, if you don't go and ask questions, they don't volunteer any information. In [city] there are four schools that take autistic children and out of the four schools one is a really good school. They'll send you to the other schools, they won't sent you to the best schools... There is a lot of things that they won't tell you, support, there is no support in [city], none whatsoever, there are no support groups in [city], it is horrible."

Roily's mother complains about the lack of services available for parents and the lack of information about those that are available: Roily's mother: "I work, but what happens to the mothers that are on welfare? that have no income, just alone by not having a job and living a life that is frustrating enough. And I imagine not just having one but sometimes some of these parents have 1,2,3 children like this and the Board does not volunteer to help them. No one, the goverment, nobody 202

helps you. If you don't go out there and look for the resources, you are in the dark."

On the other hand, the parents' fmancial situation determines what kind of

services they will be getting: Roily's mother: "What I found out is that you either have to be rich or poor to get anything for your child. I am in the middle. Right now the situation, the money that I make it is too much money to get any kind of help, then I don't qualify for any programs at home. Because I make too much money. I don't qualify for social security or Medicaid or anything for him because I make too much money. Yet, I don't make too much money to be able to put him in a private school to get the best care that he possibly can, so what do you do?." In terms of services, parents complained that some centers that deal with special children are not too sympathetic to their needs: Sergio's mother: "There's way too much apathy in that center... More than anything, the same communication with the parents... You call and there's no communication... Before, all the mothers would call, and never get an answer... I can't.... There's never been another meeting, any kind of orientation about autism, nothing." "Hay mucha apatia en ese centro... sobre todo la misma comunicacion con los padres... Uno llama y no hay comunicacion.. .antes todas las madres llamaban y nunca habia un no puedo... nunca ha habido mas una reunion, una orientacion sobre autismo, nada. "

Further, some centers are not sensitive to the needs of children who take medication and the mother's reasons for relying on recommendations: Marions mother: "My child takes his medicine every six hours... I call to order the medicine, if you go in person, they won't give it to you [in the hospital]. Two weeks go by and the medicine still doesn't arrive; and when it finally comes, it's the wrong prescription." 203

"El [nino autista] toma las medicinas cada sels horas... pido los medicamentos por telefono, si vas en persona no te las dan [en el hospital], pasan dos semanas y no llegan, y cuando Megan las recetas Megan equivocadas."

Gerson's mother: "I had a pretty big problem with the hospital. My son is taking medication, you don't always find sympathetic people in that hospital... The check-ups are pretty drawn-out, but I think that's okay up to a point, because to prescribe medicine and follow him up [how he's doing with the medicine], it's okay... I found that the pills weren't doing him any good, and quit giving them to him on my own, because everyone was saying how much worse he seemed on that medicine, my friends, people who stopped by, and I let myself be influenced by that... There is a lack of information, because I didn't know." "Me he encontrado un problema bien grande en el hospital... El nino esta tomando medicacion, no siempre tu te encuentras con la sensibilidad de la gente en ese hospital... Los chequeos son bien extendios pero creo que esta bien en cierta manera porque para recetar medicina y darle seguimiento a las pastilla it's okey... [yo] encontraba que las pastillas no le haciedo bien al nino... le quite las pastillas a mi hijo por mi cuenta porque todo el mundo dice yo veo al nino peor con las pastillas, las amistades, la gente que venia aqui y yo me deje influenciar por eso... hay una falta de informacion porque no lo sabia. " Another common complaint was the lack of sensitivity of a center's personnel in dealing with clients that miss appointments. This mother descibes her reasons: Gerson’s mother: "The problem is, I missed some appointments, and they tried to close me out... The doctor began the appointment with my son by asking what he could do for me, things that maybe a lawyer or a store clerk would ask you, "What can I do for you?" [but not the kind of question I expected from a doctor]. Not Just the words, but his tone, and his attitude... Because of course, you think you have to establish a certain kind of relationship with a doctor, an element of professionalism, but he didn't even have the sensitivity to realize that I'm in a different situation from the other parents he sees.... Before, my mind was at ease, but not now, I don't have control of my life. " 204

"La cuestion es que perdi unos appointments y ellos trataron de cerrarme la puerta ... la pregunta para comenzar la cita con el nino de que podia hacer [el doctor] por mi, cosas que te preguntan quizas un abogado o una tienda que puedo hacer yo por ti [pero no un doctor]... no solamente esas palabras sino el tono y la actitud... Porque ya se supone que tu necesitas establecer cierta relacion con el doctor, cierta parte de lo professional pero como no tienen la sensibilidad de comprender que yo estoy en una situacion diferente a la de los otros padres... antes mi cabeza estaba tranquila [ahora no], yo no tengo control de mi vida. "

Parents find it difficult to get regular pediatricians in the community who can take care of the child's regular medical needs which specialized centers for special children in the area do not treat: Gerson's mother: "I began to look for places, and I found that I couldn't find anyplace, I couldn't find a doctor who would accept me. When you consult with them, as soon as they hear that he's autistic and how old he is, many don't even want to see him, because he will be a major problem to handle. Lately when I've called trying to find a doctor. I'm afraid. I think [to myself]. I'm not going to say much, I won't talk about how he is, and I think, when he shows up in their office and starts acting goofy, they'll kick me out; you start expecting the rejection [before it even happens]. You expect it because not all of these doctors love kids [or love their work], they want to see your money." "Empece a buscar lugares y encontre que no encontraba ningun lugar, no encontraba un doctor que me aceptara cuando oyen que es autista y el tamano que tiene en los consultorios a veces no quieren ver a un nino asi porque les créa problemas... cuando he llamado ultimamente tratando de conseguir un medico ya estoy con el temor. Pienso no voy a hablar mucho ni a decir como es el y pienso cuando el nino llegue alia y se ponga majadero me lo rechazan, tu estas esperando el rechazo. El rechazo porque no todos estos medicos tienen el amor, tiene que ver el dinero." 205

Others complain about very few personnel and very few programs that serve this

population of so many children: Jesus' mother: "What I do find is that for so many kids there's very little personal [attention]... I didn't realize there were so many children with problems... For every service, there's a waiting list... four months just for the evaluation. For a child, four months is a long time, they can get worse, or whatever. " "Lo que si encuentro es que para tantos ninos hay poquito personal... yo no sabia que habian tantos ninos con problemas.... para toda clase de servicios hay lista de espera.... de cuatro meses para la evaluacion... para un nino cuatro meses [es mucho] se empeora o lo que sea." The language barrier was another factor that impeded obtaining appropriate

services: Claudia: " Do you think [not speaking] English is a factor that limits your access to services?" "Ud. cree que el ingles es un factor que le impide conseguir servicios? Gregorio's mother: "Certainly. The better you can speak English, the better your chances of getting services." "Bastante para el que lo habla suficiente, si, bastante."

Gerson's mother: "There's very little literature about autism available to parents. Sometimes they'll give me a pamphlet... I haven't had the chance to sit down and read anything, because I need help reading anything in English. " "Hay poca literatura [sobre el autismo] para los padres. A veces me dan una hojita... no he tenido chance para sentarme a leer porque necesito ayuda [para leer en ingles] cualquier cosa que yo quiera leer. "

Parents mentioned that those parents who speak English can obtain better services than those who do not: 206

Gregorio's mother: "Our language is a disadvantage for us, because [certainly] the mother who speaks English can defend her[self/child]. In this case, [speaking] the language is essential, it's the principal basis [for being able to accomplish anything with this]. " "El idioma nos va a perjudicar bastante porque la [madre] que habla ingles se va a defender, la base esencial en este caso es el idioma, la base principal en este caso." Translations of services are seen as inadequate; patients and clients may lose the meaning when translations are less comprehensively given:

Daniel's mother: "Discussion (Support) groups don't interest us, because as Hispanics, we're always on another plane; the group leader probably only speaks English, and so [of course] he's going to direct the discussion for the Americans in English. They understand everything perfectly, of course, and then the worker has to translate it all for the Hispanic mothers, and you know how it is, going from one language to another, you can't translate many things directly. What one person pulls from the discussion and the outline is what we get translated to us, [and it might not address what our questions are] so then the parents [we] don't show the proper interest. " "Las charlas ya no estan interesantes porque nosotros como Hispanos siempre vamos en segundo piano, porque vamos a decir el conferenciante... solo habla ingles y da la conferencia para los Americanos en ingles, ellos entendieron todo perfecto. Entonces al grupo de madres Hispanas tiene que traducirlo la trabajadora de alii. Entonces Ud. sabe que de una mente a otra las cosas no van directamente iguales. Lo que capta la persona con los puntos y el bosquejo, eso es lo que cogen los Hispanos. Entonces ya los padres no muestran el debido interes. " Claudia: "And you think not being able to speak in your own language is an important factor?" " Y Ud. cree que la falta de hablar en su propio idioma es un factor importante?" Daniel's mother: "Yes, it's very important, because in your own language you can understand everything better, things make better sense to you, and then, that makes you more responsible because then you can't 207

honestly say, "I didn't understand and I didn't learn anything but what you understood from that presentation. " "Si, muy importante porque en el propio idioma de uno, uno capta mejor, toma mejor sentido a las cosas y eso pues lo hace mas responsable a uno ya que no tiene excusas moralmente a decir, yo no entendi y yo no supe sino que ya Ud. entendio la conferencia que le dieron."

Parents become concerned about quick labels and about a "quick" diagnoses: Roily's mother: "The doctor can make the wrong diagnosis. I can take my child to a doctor and it can be one of those days that Roily is having a really bad day and they can see a whole picture, they can see a whole bunch of other behavior problems that he normally wouldn't behave that at a normal he wouldn't have, so you know they [doctors] will take it a step forward and diagnose something else only because they saw that particular day but the lady, the doctor that diagnosed Roily only saw him not even half an hour and she came up with that FDD. They just want to put a label on these kids so fast, without really finding what's wrong with him, they want to give it a title. I guess it has to do with the parents because they want to know. You want to know, exactly what is wrong with my child so they have to tell you something. So they are pressured by the parents, they make the quick diagnosis like that. "

A parent recommends that professionals have sensitivity with special children and their families; Gerson's mother: "That is something severely lacking. What are these people thinking, who fight with these kids? And not just with the kids, but with the parents too. Because after all's said and done, you can look at these kids meanly and they won't even be aware of it, but a parent has some pretty basic necessities." "Eso es algo que hace falta. Donde esta la psicologia de esta gente que briega con estos nifios?, mas que todo para con el nino, mas que todo con los padres, porque el nino al fin y al cabo tu lo miras mal y ni cuenta se da pero uno como padre tiene unas necesidades basicas." 208

When the social worker is Hispanic, parents acnowledge that there is a stronger

connection between the parent being served and the social worker: Gerson's mother: "Perhaps because I'm Hispanic, because I'm [nationality], because I speak the same language, there's always better communication. " "Quizas por ser Hispana, por ser [pais], por hablar el idioma siempre hay una comunicacion mejor. " On the other hand, fathers complain that services that are available are

insensitive to fathers who work because of their schedule; most of the

information they receive about the child, has been related through the mother: Jesus' father: "I've never been to a meeting with anyone to talk about his illness... She's [the mother] always had to explain everything to me. I don't have <^ime to go to these meetings, because I have to work. I think it would be wonderful if they would take the time to meet with the father [on his schedule] as well as with the mother, because that way my child would have a better chance in life." "Yo nunca he asistido a una reunion respecto a la enfermedad de el... ella me ha explicado a mi... porque yo casi no he tenido tiempo de asistir y porque trabajo. Yo diria que fuera una cosa maravillosa que se instruyera tanto al padre como la madre porque en si ese nino lograra mejores puntos en la vida. "

Finally, parents recommend recreational centers in each community for special needs children because parents cannot take these children to regular parks because others do not understand their behavior: Jesus' mother: "If there were centers close by in every community, I would like him to be able to go and share (be with) with other children like him. Like a community center, a place where he could go to play with people who understand him... Because many times I've taken him to 209

the park and he's begun to scream and behave differently with the other kids. Not everyone understands. " "A mi me gustaria, que hubieran centros cerca en cada comunidad donde uno pudiera ir a compartir con mas ninos que sean igual que el. Como un centro comunitario, como un sitio donde el pueda ir a jugar con personas que lo entienden... porque muchas veces yo lo llevaba al parque y el comenzaba a gritar y a comportarse diferente con los otros ninos, no todo el mundo entiende."

"What helps"

Parents offer their experiences on what has helped them to deal with a child with autism. Services such as respite care are beneficial to give parents "a rest" from their 24 hour job: Sergio's mother: "The "respite care" service has helped me, thank God. They send a woman every Saturday, and she's been coming for six years... That has helped me, especially in giving me a break and letting me rest, because I'm basically "on" 24 hours a day, until he sleeps. As long as he's awake, I have to stick to him like glue. So that helps me be able to have some time to myself, to unwind. Because you know, sometimes you live all tensed up [and maybe don't even realize it]. Having a child with autism, you're always tense, waiting for him to pick up this or that, he's always in danger. So having that respite has helped me a lot. " "[me ha ayudado] el servicio de 'respite care', si, gracias a Dios, mandan una senora todos los sabados que tiene como 6 anos de estar con el... Me ha ayudado y sobre todo descanso porque son casi 24 horas que mientras el esta despierto hay que estar pendiente de el... entonces eso me ayuda a ponerme un poco mas tranquila porque a veces uno vive muy tenso, el que tiene un nino con eso [autismo] tiene mucha tension que si coge esto, siempre esta en peligro el nino, entonces eso si me ha ayudado mucho."

Gregorio's mother: "The "respite care" service is a great advantage, because Gregorio comes home happy, singing, talking about things [he's done], and I feel pretty good about it." 210

"[el 'respite care'] es algo ventajoso, porque Gregorio viene contento, viene cantando, viene hablando cosas y yo me siento bastante bien por esa parte. "

Jesus' mother: "If I have to do something, she [the respite care worker] can attend to him, she takes a load off of my mind. " "Si yo tengo que hacer algo ella [respite care worker] lo atiende, me quita mucha tension de encima. " Meetings with other parents who have children with autism was found to be very beneficial in learning how deal with certain behaviors and to cope with feelings that are experienced as parents of a "special child": Daniel's mother: "It helps a lot to know other parents, you know why? Because you start thinking of yourself as the only one who has ever had to go through this [having an autistic child], you start thinking God is punishing you, maybe you have failed in some way. But knowing there are other parents going through the same thing, you know God isn't going to punish everyone. " "Ayuda mucho [conocer a otros padres], ayuda muchisimo, sabe porque? porque uno mira que a uno solo no mas le ha pasado esto [el autismo], lo toma como que Dios lo castigo a uno porque dice que hasta bien que uno tal vez tenga una falla pero a todo el mundo Dios no va a castigarlo. "

Jesus' mother: "The worst thing that you can do is close yourself off [from the world] when you have a child with problems; you start seeing everything as so much bigger [than it is; blowing things up out of proportion]. There are many other cases worse than my son. " "Lo peor que uno puede hacer es encerrarse cuando uno tiene un nino con problemas, todo se lo mira uno mas grande mientras que las cosas no son tan grandes. Hay muchos mas casos de los que yo cria. "

Roily's mother: "It [parents' support group] has helped because I realize that there are a lot of parents out there that have children much older than Roily, so they have been through this already and it has been hard for them too but they survived it. " 211

They share information on professionals who have been helpful, that

professional have and the qualitites that contributed to their helpfulness: Roily's mother: "I never met a doctor like that [developmental pediatrician], she knows about autism, that's her specialty, she is very compassionate, she understands how parents feel, she understands things that we need that we don't have like counseling and stuff like that, she is always there if I have to take the phone and call her, she is always there to listen to me. "

Parents mentioned that helps to parents is necessary as an ongoing process, as the child reaches different developmental stages: Daniel's mother: "It helps to know how to treat the boy. I think other parents do need this [information], especially in Spanish, as well as constant[ly needing] help. For example, now that my son is becoming a teenager, that presents new problems, like masturbation and those things. Even I thought masturbation was something dirty, something you shouldn't do... But his teachers explained that at a certain age, all boys have to do certain things, normal as well as "special" kids. I never knew anything like that, I never had to deal with it before." "[sirve saber] como tratar al nino, yo creo que esto si le hace falta a los demas padres y sobre todo en espanol y costante ayuda, por ejemplo como ya mi hijo va a pasar de teenager que se presentan otras cosas como la masturbacion y esas cosas, Yo inclusive pensaba que la masturbacion era algo sucio, algo que no debe de ser... pero las maestras me explicaron que a cierta edad estos ninos tienen que hacer ciertas cosas pero como en lo normal yo nunca supe nada ni nunca tuve que lidiar con esto. " Parents also recommend looking at children as unique and working with the child in spite the area of delay: Daniel's mother: "There's a difference between an autistic child and a normal child, and it's up to each individual parent to work with their child. But I don't want to say that they're [the kids?] all stupid, and for 212

every mental [block?] they might have, if you work with them constantly from the time they're little, you're going to find his strengths, and be able to develop whatever you want him to develop. Because consistency pays off in opening him up to new things and developing his interests... All these kids have the same thing [autism], but it shows up in different ways." "Entre un autista y otro hay diferencia y depende de como cada padre trabaje con el nino pero no quiero decir que todos sean brutos y por mas cosa mental que tenga si se trabaja desde pequenito con el nino costantemente se va abrir una brecha y va a desarrollar cualquier cosa que uno quiera que el nino desarrolle... porque la constancia hace que el nino se abre y se desarrolle un interes... todos tienen la misma cosa [autismo]... pero acompanado de diferentes cosas."

When the child gets "out of control" it helps to use different "home" techniques that works with these children: Person's father: "When he doesn't want something, you have to look for a way to calm him down, for instance, putting on some music that he likes; his mom will try to calm him down with his favorite foods." "Cuando el [hijo] no quiere una cosa hay que buscarle los medios para tranquilizarlo como ponerle musica que a el le gusta, [la mama] trata de tranquilizarlo con comida que a el le gusta. "

Person's mother: " I think each parent has to find his own methods [for dealing with it], you can't make one general rule to fit all cases. I know everyone has a different way of disciplining their kid from me, but in my case, love is what works best with him, patience and some little tricks. But when he's really worked up, I try to distract him, and eventually he gets confused [and forgets to be upset]." "Yo creo que cada uno tiene que buscar su metodo, no puede haber una regia establecida para todo. Yo se que cada uno tiene una disciplina muy diferente a la mia pero en mi caso lo que me funciona con el nino es el amor, la paciencia y algunos trucos. Pero cuando el ya esta bien molesto lo distraigo y el se confunde con el tiempo." 213

To have information about autism is something that helps: Gregorio's mother: "Having information helps one think about things rationally, to realize you have to accept the way your son is; once you've done that, you can go on to raise him the best you can. " "Eso [la informacion] le ayuda a uno a reflexionar que hay que aceptar como es el nino para uno poder irlo educando. "

Sergio's mother: "Having a social worker always communicating with the parents is very important... The social worker plays a crucial role in educating the parents about autism. " "Tener el trabajador social siempre en comunicacion con los padres siempre es muy importante... el trabajador social juega u n papel primordial [en que uno aprenda sobre el autismo]. " Parents give advice to others parents with different points of view: Mario's father: "They advise parents to treat the kids well. Yes, it's essential to treat them well, to maintain your temper. With him, you can't agitate him, you can't nag at him; you can't nag these kids, they just get mad. "Les daba el consejo que los trataran [a los ninos] bien, eso si, hay que tratarlo bien, tratarlo bein sin ponerse bravo, con el no se puede alborotar ni reganar, esos muchachos no se pueden reganar, se ponen mal. "

Jesus' mother: "[It's important] to keep fighting, keep fighting for them... and to know how to have patience. Always tell yourself, "Patience, have patience, " because without it, everything will fall apart. The time will come when you think you're going crazy... When you find yourself in a daze, you ask God for patience, that's the advice I give to everyone; and smile, always smile and devote your life to your child. " "Seguir luchando, luchando por ellos... y saber tener paciencia. Decir la palabra siempre paciencia porque no, para no desfallecer porque llega un momento que uno se quiere volver hasta loco... cuando uno se ve muy aturdido, pedirle a Dios paciencia, ese es el consejo que yo le doy a cualquiera, y siempre sonreir, dar la vida." 214

Gregorio's mother: "Many things. Accept it, even though deep down you don't want to. You're always thinking, "It can't be, it can't be." I always came back to that, why me? But suppose I were to tell a mother or father that an autistic child likes to eat paper, they would say to him, "Stop that, don't do that any more," maybe not realizing how he is And the boy looks at you, and then seeing his face, looking at him and him looking back at you, you realize he's autistic, you know if he's angry or not. If he's a violent child, you need to show him, you need to be persistent. Autism doesn't mean he can't learn how to behave, you have to teach him. " "Muchas cosas, aceptarlo aunque dentro de uno esta la palabra no lo acepto. Esta en la mente de uno no puede ser, no puede ser. Siempre me quede con esto de que, a mi porque? Pero vamos a suponer, yo le diria al padre o a la madré un [nino autista] le gusta comer papel, quitale esa costumbre de que no, deja eso, lo entiende o no lo entiende el [nino] sabe eso, porque el nino lo mira a uno, entonces viendolo a la cara, mirandolo a uno sabe uno que es un nino autista, sabe uno si esta enojado o no esta enojado. Si es un nino violento, ensenarle...[hay que tener constancia] ... eso [el autismo] no impide que no se le eduque, hay que ensenarlo." SUMMARY:

Chapter Eight "We recommend, " is the final theme that emerged from thi study. This chapter has two categories; "We need, " and "What helps. " Parent tell us from their perspective what they need to continue with the journey of autism. They also tell us what has been helpful.

"We need, " deals with services linked to qualified professionals who not only understand their journey but who have knowledge of the child's disability.

Professionals are qualified not only in terms of academic degree but in interpersonal sensitivity. One of the greatest needs expressed by parents is relief 215

for themselves. Autism is a 24-hour job and parents need time for themselves;

they need safe places where children can go not only for a few hours but for a

few weeks when parents need "a vacation.". There is a lack of understanding

and knowledge about autism, and this information should be at the micro and

macro level. Macro includes the government and micro includes themselves.

They also need to know more about the disorder. More information includes

awareness programs and dissemination of information. More important, parents

need to learn to deal with their children and with the disorder as a measure of

prevention of marital discord and other problems such as alcoholism. Parents

need to learn to work together for their child's benefit.

Support groups are essential in dealing with the disorder and their children. Parents need to learn to "deal" with the school system in terms of knowledge of different programs and negotiating the system. On the other hand, parents who are middle income "get stuck" in term of receiving services due to their income. Resources need to be better distributed for those in the

"middle". Centers that deal with parents and children with autism need to be more sensitive to their special needs. Parents complain that programs and assistance are not accessible: phone access is often thwarted by recordings, program personnel fail to provide sufficient orientation about call, and support 216

groups are lacking. There is not a good system in place by which children can

receive daily medication and parents need mailed prescriptions to arrive

promptly Parents need centers to acknowledge the way they feel about

themselves and in dealing with their child's disability. There are very few

programs available for the handicapped, and the programs available have long

waiting lists and very few personnel for the number of children and families that

they serve. Language barriers also impede the flow of adequate information and

services. Parents who speak English get better services than those who do not.

Parents become concerned about professionals being to "quick" to label their

children without studying children holistically. Parents require professionals'

sensitivity for dealing with parents and children with disabilities. Fathers pointed out that current services are insensitive to fathers, tending to focus mostly on mothers. There is also a need to include "sensitive" schedules that allow fathers to get involved in services and treatment. Finally parents recommend recreational services to be made available for children with autism, as children with autism require physical activity just as all children do, yet "regular" parks are problematic locations for such children.

"What helps" is the parents' stories about what has been beneficial to them. Parents discuss that respite care services are of great benefit because it 217

gives them relief from the care of their children. Children with autism also learn

from others while receiving respite care services. Meeting and talking with

other parents with similar problems help convey to parents that they are not

alone in their journey; they also learn from other parents how to "parent" their

children and deal with certain behaviors. Professionals' qualities should

encompass not only an academic knowledge of the subject but should include

personal qualities as compassion, availability, and understanding of how parents

feel. Parents who have received ongoing help throughout their child's

development find such long term assistance to be beneficial. Parents advocate for

professionals to look at their children as unique individuals in spite of their developmental delay, and desire other parents to treat their children as

"children" not as "autistic" only. Parents usually discover "home" techniques that are helpful. Finally, information about autism in terms of the disability itself, development, and prognosis help parents to deal with their children more effectively. CHAPTER IX

DISCUSSION

"Tu piensas que eres distinto porque te dicen poeta y tienes un mundo aparte mas alia de las estrellas... De tanto mirar la luna ya nada sabes mirar, eres como un pobre ciego que no sabe a donde va, vete a mirar los mineros, los hombres en el trigal y cantale a los que luchan por un pedazo de pan... vive junto con el pueblo, no lo mires desde afuera, que lo primero es ser hombre y lo segundo poeta. " (Folkloric song by Atahualpa Yupanqui called "El poeta ")

Translation: "You think because they call you a poet, you're special, and you have your own world out beyond the stars... But from so much gazing at the moon, now you don't know how to see. You're like a poor blind man who can't see where he's going. Go watch the miners, the men in the wheat fields; Sing to those who must struggle for their daily bread... Live with the peasants, don't gaze on them from afar. So you can [earn the right to] say. You are a man firs and a poet second.

INTRODUCTION

This study aimed to explore, describe, and discover the experiences of a group of Hispanic parents who have children with autism. As parents described

218 219

their individual stories and interpretations, five common themes emerged from

this context. Each theme and category was named using the participant's own

words. In addition the participants chose the pseudonyms for their own

children, whom they would describe at length in the study. This project's

interpretation began with the participants words, and was also achieved by using

peer debriefing, member checking, self-reflexivity, cultural context, and

contextualized language (Altheide & Johnson, 1994). Because nine of the ten parents interviewed spoke Spanish, an attempt was made to keep their translations as contextually and near precise as possible.

This study strives to allow the voices of this group of parents speak for themselves about what it means to have a child with autism, how they perceive the disorder, how it has changed their lives and their families, the child within, the thoughts for the future, and their recommendations. The commonalties that emerged from the participants' stories were grouped into five themes defined as:

"Why me?," "How autism has changed our lives," "They are children too,"

"After we are gone," and "We recommend." A summary of each theme is included at the end of each chapter. This study is not comparative and does not attempt to discuss culture as a form of comparison; rather it tries to holistically 220

integrate cultural context, worldview and the effects of autism experienced by

ten Hispanic parents. It aims for an understanding of the individual stories.

In this chapter, I will further discuss the interpretation of the themes that

emerged from the study, and reflections on methodology and research.

Furthermore, I will discuss the study's implications for social work, clinical

practice, and policy, and finally, will make recommendations for future research

in the area of childhood autism.

Discussion of the themes

Five major themes emerged from this research they were; "Why me?, "

"How autism has changed our lives, " "They are children too, " "After we are gone, " and "We recommend. " A summary of each theme is discussed at the end of each chapter.

Theme I: "Why Me?" is the initial journey to the world of autism from the parents' perspective. Their initial experience is the assumption of a healthy child and the presumption of normalcy is latent for some months. The journey starts with a dialogue to their inner world, a dialogue that is characterized by the reluctant possibility that something might be wrong with their child. Parents question the reality that their child's behavior differs from other children, and different emotions start to surface with the gradual realization that their child is 221 displaying "odd" behaviors, which vary between and among children and with the severity of the disorder. Parents have their own stories about their inner and outer world.

"Why Me?" is the question often asked by the parents in this study. It is the beginning of a journey filled with uncertainty about the child's disability, about the child's future, and about themselves. Autism seems to be a disorder that is very difficult for parents to accept due to the nature of the disorder. The child's behavioral manifestations, progress, and prognosis influence the parent's own realities. In this study, parents commented that the impact of having a child with autism was different than having a child with any other handicap for many reasons; first, autism is not a visible handicap; second, parents find out about the child's disorder sometime, usually months or even years after birth, when the idea of a "normal" child has been formed; third, children with autism look normal and might have skills in some motor areas, making it harder to accept that they have a long-term disability. Through this journey, parents dance between "signs" of normality and disability. The realization of the disorder becomes more difficult to accept when the child has a "milder" type of autism, because the interplay with normality is closer. 222

In their search to find out what is wrong with their children, parents seek

someone who can tell them their child's diagnosis. The realization of the "loss of

the perfect child" brings feelings that challenge their inner world with a reality

that does not seem fair. Parents confront the powerlessness that accompanies

recognition of the disability and the hope of curing their children. Parents talk

about feelings such as denial, guilt, helplessness, depression, and shame,

and about their unwillingness to believe the diagnosis. "Why Me?" is a question

to both the outside and inner world.

The parents' world is contextual. Because mothers are the main

caretakers, they doubt their parenting skills and fear that they might have somehow caused the disorder. Explanations are offered by parents for causation

Explanations of why the disorder occurred is directly linked to the culture and informed by religious views, mysticism, past experiences, popular, and individual worldviews. Cultural views incorporate elements such as not eating the right food, negative thoughts during pregnancy, unwanted pregnancies, depression. Religious views, for instance, present parents with a question of the injustice of the disability and punishment: some, in fact, challenge God for the unfairness. 22^

The impact of autism not only affects parents but the entire family.

Parents have to confront the realization that their lives will change and that they

must arrange for the incorporation of the child in their lives. Parents encounter a

struggle of accepting a child they did not want, learning to live with a disability

they do not know about , a situation creating a sense of powerlessness of not having control over life and over a future that represents fear, fear of the unknown. Parents went through mixed feelings, and expressed self-destructive thoughts, pessimism, feeling cheated, depression, and yet all clung to hope.

Parents hear from professionals about the classical behaviors of the disorder and about the prognosis. What parents know and understand about the disability plays an important role in how they feel. Parents in this study reconstructed their ideas of the disorder. They spoke about the interrelationship between what they know about the disorder and what they know about autism that they have learned first-hand from their daily life experiences. Fathers in the study seemed to have a harder time accepting the diagnosis when their children were younger. A father expressed that everything he learned about the diagnosis was from his wife.

Finally, the theme of "Why me?" included the difficulties that parents face in attempting to accept the diagnosis. Finding that the odd behaviors they 224

noticed in their children have a name and a diagnosis fostered acceptance of the

disorder. They learn that the child who displays 'odd' behaviors may

have childhood autism. The duality of accepting and not accepting the disability

is a struggle of the acknowledgment of the handicap and its significance. Parents

know that autism is a long-term disability. Yet acceptance of autism as a reality

in their lives is the acceptance of a hopeless future.

The duality of accepting and not accepting the disability is separate and distinct parental acceptance of the child. The child is viewed as a child and the disability is viewed as a disability. Here is the beginning of the parent's journey of integrating the child and the disability into their lives. Acceptance of a child with a specific handicap can mean the resolution of the parents' inner and outer dialogs but acceptance of autism in the parents' lives is the inner conflict between normality and odd behaviors, hopelessness, and resignation. In this study it is the resignation of accepting the child as a "whole package" that has been pinpointed; parents live the paradoxical acceptance of a difficult disorder and the love for the child.

Theme II: "How Autism Has Changed Our Lives" expresses the parents' realization and integration of autism in their lives. It is the realization that the journey will not be short but rather long-term, and it acknowledges the 22J

adjustments they have had to make in their lives. Babies and toddlers gradually

are totally dependent, usually on mothers, but the dependences gradually ends as

a child matures. However, the realization that the child is autistic evokes

different feelings on parents. Mothers begin by initially realizing that they no

longer have control over their lives and their lives are going to change because they have to limit their activities and must deal with a disability they cannot control.

Parents reflected on their initial adjustments to the disability and the changes in all aspects of their lives. Families become vulnerable and all family members have to re-adjust in their lives at some point. Mothers who had worked suddenly found that they could no longer remain employed outside the home, because the disability demands a mother's total commitment. The degree of severity the child's autism causes more dependency on mothers because activities that we take for granted become the mother's responsibilities.

When the child with autism is younger, care seems more difficult because once those odd behaviors are put into a context of disability, the cognition of

'odd' behaviors change. Both the child and the family begin a process of learning to live with each other. Parents teach their children different behaviors and children teach their parents about their needs through their behaviors. The 226

presence of autism in the household represents changes such as economic,

physical, social, psychological, and individual changes.

Mothers in this study discussed their depression at having a child with

autism. However, their depression is not the same as clinical depression. Their

depression is closer to despair, uncertainty, and hopelessness. It is an existential

depression that accompanies mothers through their journey with autism. It is a

question of "Why Me?" and the realization of how autism has changed lives and

the futures. Parents of children with autism travel in many directions in their

search for meaning and in the quest to move beyond despair.

Parents of children with autism do change and they rebuild their lives.

Autism affects every family member in one way or another. There is no end to the readjustments in a family of an individual with autism; such changes must take into account changes in developmental stages, the child’s behavior, needs, and also the family's impact on the child and changes within the family.

Changes that a family of an individual with autism experience must be seen to form a life cycle perspective and from a contextual vantage point.

Marital difficulties arise, and the causes for the difficulties are seen differently by parents. Mothers expressed their feelings that the presence of autism in the family has impacted negatively upon their marital relationship. 227

However, marital problems cannot be seen as only husband-and-wife relationship

but also in a dynamic and holistic perspective by which everything surrounding

the parents' lives are affected. Autism affects the structure of marriage and the

way families normally function. Autism touches much of what parents do

together; it influences the circumstances of family activities, mealtimes, sleep,

work, and social activities. Taking care of a child with bizarre behavior brings

stressors for the entire family causing strain on the family relationship in

unexpected ways.

Parents also reflected upon their perceptions of how autism might have affected siblings. In the world outside the family, siblings like any other individuals' strive to fit. Having a brother/sister with a disability stigmatizes siblings as "different". Siblings also change and go through changes and through periods during which they might resent children with autism. But generally, they learn to accept their brother/sister and to incorporate them in some of their activities.

In this study, parents reflected from a holistic perspective of how autism has changed their lives, the meaning of having a child with a disability, and what it represents for the family from a cultural context. Mothers for instance, discussed how their children's lives revolved around theirs, and that they become 22&

the only caretakers of these children. Culturally, there are ascribed roles

assigned to members of a gender group. Fathers, for instance, continue playing

their assigned role of providers and it is the mother's responsibility to take care

of the child spite of difficult behaviors. For fathers, lives do not change much in

terms of responsibilities, but mothers seem to shoulder the burden of care for the

autistic child which then accompanies the already stressful activities of taking

care of the house and other children. Autism becomes the mother's

responsibility; the other members of the family can generally continue with their

own lives but not so mothers. Some mothers confessed losing their happiness.

Sorrow and hopelessness are , and other aspects of the mothers' lives are experiences along with their sadness.

On the other hand, mothers as the main caretakers learn to "translate" the world of autism. When their children are babies, mothers learn to recognize different types of cries and the mother-child relationship becomes deeper.

Mothers talked about their communication and interpretation of the world of autism; this communication was also given a name of "mother's sixth sense". In this study, mothers spoke about their experiences in parenting children with autism. Autism is known to be a life-long disorder. Mothers struggle with the idea of hopelessness and fears for the future. There is a duality between 229

acknowledging the disability and love for the child. Mothers go towards their

own solutions. What works for some families might not work for the other

ones.

In summary, having a child with autism changes and affects the entire

family one way of another. Each family is different in terms of dealing with the

disability and how it affects upon them. How changes occur need to be addressed

in every family from a holistic and contextual perspective.

Theme III, "They are children too " is the description of the child within

the child with autism. Parents reflected on their views about children, not about

autistic children but about children with autism. "They Are Children Too",

reflects the concept of "normalcy beyond disability". It reflects the acceptance of children within the parent's world. Parents deconstruct the common view of autistic children, and take us to the journey of the inner world of children with autism. Parents discuss the progress they have seen in their children from an "autistic developmental perspective".

Children with autism do improve in many areas, some more than others.

When they are younger, their behaviors are more difficult to handle; until children learn some skills, they require close to 24-hour-a-day care. Parents talk about progress in terms of some abilities, such as behavior, speech. 230

understanding, bilingualism, toileting, memory, association of events, and the

ability to play. Parents present us with a new perspective of development and

autism such as milestones, maturational changes, expression of emotions and progress. What and how much children with autism learn varies from child to child. The impact on autism of factors such as schooling, and the home environment are factors to consider.

Development is associated with the way parents describe their children.

Parents' concept of "normality" and progress is contextual. From a cross-cultural point of view, the concept of progress varies. In some cultures the timely achievement of developmental stages is a sign of normality. In others, normality is viewed by the performance of some activities. However, in this study, parents did not view all autistic behaviors as '"normal," rather they put

"normalcy" into the context of autism, development, and culture, providing a new perspective by which they view the disability. It is also the dance with autism and normalcy that can be different with other linear and visible disabilities. This interpretation of disability might not be universal to a group.

On the other hand, parents talk about their interpretation of the expression of emotions by children with autism. Such parents, particularly mothers, translate the world of autism and can understand their children's feelings. 231

Parents also described their experiences with the expression of sexual changes in

their children and how dealing with those changes impacted their lives. It is a dilemma of dealing with the unknown, wondering how the child might react, how children with autism manifest and channel sexual urges. Culturally it can be stressful and cause isolation because sex is something many do not talk about.

As time goes by, parents learn to deal with their youngster's sexual expression.

Parents of younger children fear that their child might get raped and/or traumatize their other children.

In summary, parents' interpretation of normality emerges from their individual experiences. Their interpretation and journey to the autistic child's inner world needs to be seen within a context of culture in relationship to what autism means to them.

Theme IV, "After We Are Gone " epitomizes parental concerns about the future. The realization that parents will not be around all their lives, "After We

Are Gone" has many layers. It is the concern that autism is a life-long disability, that their children will always be autistic. It is the realization that autism is forever and the expression of the duality of hope with hopelessness. Parents see and talk about their children's progress but they also talk about their limitations.

Every parent is concerned with their child's future. However, for parents of 2^2

children with autism the future takes a different dimension. It is mixed with

parents' realization of their own impotence to change the disability, and the

realization of their own mortality and even how much love hurts. Children with

autism have many limitations and mothers are the extension of their existence.

Mothers worry about who will take care of their children after they are gone,

Will they be loved? Will they be understood? Will they be comfortable? All

these questions emerge. Searching for options becomes an issue. Parents deal with different emotions about the future. Some fear of institutionalization as an option. Others see it as a solution, especially when their children exhibit more serious behavioral difficulties. Each story is different and unique. Feelings and options regarding the future need to be addressed from a cultural point of view.

In some cultures, such as Hispanic, institutionalization is not an option, whether for the elderly or the disabled. Because children with autism are considered children regardless of their age, it becomes very difficult to place a "child" in an institution. They are usually taken care of by family members at home.

However, the parents in the study described mixed emotions that derive from personal experiences, meaning, and cultural traditions. That Hispanics refuse institutions more than other groups is complicated by the fact that parents expressed their fears and concerns of the provision of care for their children 233

after they are gone. It is often assumed that Hispanics have many social

supports but the issue of immigration, and other factors such as financial,

mobility, and knowledge of the English language, often are not taken into

consideration. Many new immigrants to this country left their social supports back home.

On the other hand, hope and meaning is part of the reflection to the journey of living with autism. Parents hope that their children will get better by a "miracle cure" and at the same time they realize that they can help their children to improve but they cannot cure autism. Hope and meaning can have many layers. It cannot be seen as the last stage parents of children with autism go through. Hope and meaning are present from the moment parents come to grips with their child's diagnosis. Hope and meaning are important to all families and it is molded and reshaped as time goes by. It does not always resolve itself in a final harmony.

Parents give different meaning to their child's disability, some believe that they become special parents; others believe that it is a privilege to have such a child, others believe that it is God's wish. Their reasons vary. Hope and meaning are also constmcted according to their child's level of autism and for others emerge during the dance of normality and deficiency. Finally, meaning 234

gives resolution and resignation to parents' pain. Hope gives them meaning to

continue with their journey.

The final theme is V, "We recommend, " in which parents give closure to

this research by making recommendations of what they need and what helps in

dealing with a child with autism. These recommendations have implications for services, practice, research, and policy. Overall, parents expressed the need for qualified professionals that deal with autism at all levels. Parents consider that autism is not the same as other disabilities and indicate they need help from professionals in crossing their journey with autism. Parents need guidance and support to learn to deal with autism as a disability, and as a life-long disorder.

However, help should be holistically designed and implemented from multiple vantage points, depending on the individual needs. The entire family needs to learn to travel through the process, to express their feelings, fears, assumptions, and their hopes for the future. They need to learn to deal with different institutional systems such as school, medical, and social services. Services should be sensitive to individual needs and individual's culture. Parents need the integration of their beliefs : ’.to the helping process. Parents go though different stages and need more help at specific times than at others. 235

Parents recounted their experiences of what helps in this study. Respite

care services are beneficial to families. Meeting with other parents helps to

re-encounter and redefine their own experiences and to hear other stories. Help

to parents should be an ongoing process.

Reflections on methodology and research

Conducting research with members of the same cultural group can be

beneficial and at the same time blurs the researcher's vision for dealing with the

insider vs. outsider perspective. Participant observation was very important in

establishing rapport with participants who did not know me previously.

A reflexive journal was kept through the entire process which helped the

researcher to look at her own biases and techniques during the research process.

This reflexive journal also helped me to keep track of my own judgments, concerns, problems, and areas of improvement regarding the project. This research journal allowed the researcher to improve and change some techniques during the process (for instance, the use of silence during the interviews).

Conducting research in the "natural setting" was very helpful.

Many interviews were conducted at the parents homes and it made a huge difference in terms of participant-researcher's role and relationship. Being at their homes was a more contextual environment. Because I conducted family 236

research (husband and wife), information collected individually was kept strictly

confidential.

Protection o f participants:

I was aware that their stories about having a child with autism is a

sensitive topic for parents. Their revelations might open old wounds and bring

awareness to roads not traveled yet. An effort was made to protect participants from discomfort in sharing sensitive information, recognizing their willingness to share information by building trust and rapport.

Implications and recommendations for social work practice

As stated in Chapter I, it is expected that this study will contribute to the social work profession in many aspects. This study will be of benefit to the clinical practice with diverse families and children who are developmentally disabled, specifically children with autism. It will benefit service delivery, creating consciousness of our methods of practice, delivery, and will offer guidelines for services developing programs and practice that are sensitive to the population being served. This study also aims to enhance research from the people's perspective that is emancipatory rather than prescriptive in nature.

Acknowledgement of other cultures and the diversity within them, and allowing 237

voices to be heard and realities understood, is the hope for the outcome in the

study.

This study suggests that disability and other debilitating conditions should

be viewed with a contextual frame of reference in mind. The context that is

advocated here is the holistic context of culture, worldview and experiences with

autism, to be seen as an integrated unit with Hispanic families. The impact of

how autism affects parents should also be understood as an ongoing process.

Parents of children with autism need constant help due to the behaviors they have to deal with. The impact of autism on families should be seen from a life cycle approach because developmental stages brings new concern to parents.

The life cycle approach should be not only from the child's point of view but also from the parent's own life cycle perspective.

The "stages" perspective suggest that parents go through different stages of conflict and resolution where parents are supposed to reach harmony at the end. This study suggests that parents do not go thought sequential stages and there is no resolution. Autism is very difficult to accept for some families.

Acceptance is never final and unidimensional. Difficulties of accepting and dealing with the disability is also contextual and varies from family to family.

This research not only brings knowledge about parents that have children with 238

autism but it can also help parents who have children with other devastating emotional conditions. It also brings knowledge about how this group of

Hispanic parents respond to the disability and how autism and children have different meanings to them.

The five themes that emerged in this study are helpful to social workers in working with Hispanic children with autism. The "Why Me?" questions needs to be addressed in working with parents. "How Autism Has Changed Our Lives" is a central theme in this research. Autism does change the family in many ways. Changes occur in many directions. "They Are Children Too" can be the way parents and some cultures perceive children with disabilities. The issue of normalcy should be addressed from a cross-cultural and contextual perspective.

It also offers us a new twist for looking at handicaps, in that we must acknowledge the child within. "After We Are Gone " seems to be an universal concern for parents. Preoccupation for the future relates to the disability, their own existence and the child's existence. "We Recommend" is this study's linchpin to action research. We must listen to parents and offer services that are sensitive to their needs and worldview.

I am sure that the themes in this research can be generally applied to those families whose children have any handicapping conditions. However, 2^9

cultural factors should be taken into consideration about how families deal with

disabilities. When a traiunatic disorder like autism occurs, there is a tendency

for parents to become more tied to cultural traditions as a sense of security.

Implications for research

This study opens the door to further research in this area. More research

is needed in other cultures to explore the interpretation of autism from a different perspective. An attempt should be made to study parents from diverse cultures and social backgrounds. Further research about the impact on brothers and sisters in needed to attempt to understand their perspective. Similar research is also needed with families whose children have other handicapping conditions for comparative purposes in order to see similarities or differences of themes and interpretations.

Limitations of this study

This research encompasses the limitation of the human instrument as researcher trying to understand experiences the change and re-shape. Despite familiarity with the cultural context, the researcher attempted to make sense from an outsider's perspective of a world unfamiliar to me, the world of parenthood in general and of autism in particular. 240

The limitations of this study also extends to the researcher's efforts to make sense of and derive meaning from the parent's stories and realities that were subject to my interpretation. I hope I did justice to their stories. The limitations were also the use of language or words to describe and communicate the many layers of realities in order to describe our thoughts and feelings. The real limitation of this story is that many children with autism cannot be heard to tell their stories. POEM

From Maria Felizzola

241 Para mi hijo autista: Jorgito For my autistic son: Jorgito

Sé que mi vida ya nunca sera igual, I knew my life was forever changed desde que llegastes, mi angel adorado my beloved angel, from the day you came, con tu sonrisa retorcida y sin par, with your twisted smile unengaged, con tu mirada perdida y sin esperanza en las with your lost and hopeless gaze. manos.

Te lanzaron desde la mas alta estrella, They cast you from the highest star, mas caistes en mi regazo lastimado but you fell into my wounded lap. con tu llanto me llegô de Dios una querella... With your cries came a charge from God; mas crecistes en mi vientre ilusionado. yet you grew in my womb filled with hope.

Esa noche en el cielo hubo tormenta; That night there was a storm in heaven; tQuién te lanzô al espacio sin reparos? Who flung you out into space undefended? &sin un arpa, sin un canto, sin trompeta? without a harp, without a song, without a con tus alas averiadas por regalo. trumpet? With your only gift your wings unfeathered.

Mas te cuidé como la cosa mas bella, But to me you were the most beautifiil con mis besos y mi amor tus alas emplumaron creature; aûn con mi fé sumergida en la miseria with my kisses and my love your wings grew. te régalé mi canto, mi poesia, mis anos. Even with my faith drowning in torment, I gave you my song, my poems, my years.

En vano fue, no aprendistes a volar, All in vain, you never learned to soar, no alzastes el vuelo de este mundo you never rose in flight from this wretched desgraciado, globe. no aprendistes ni siquiera a sonar You couldn’t even learn to dream; te quedastes entre nubes atrapado. Your were trapped in your world between the clouds.

Y a mi se me llenô de llanto el corazon, And my heart was filled with grief; sin el milagro de tus alas realizado. there would be no miracle to give you wings. De nada valiô mil ruegos ni el clamor, Unheard, unanswered were my prayers and y tu, angel, aqui signes en la tierra tears, secuestrado. and, my angel, here you stay, imprisoned on this earth.

Mira, oh Dios, es para ti esta querella Oh God, see my child; to you is aimed this de la madré de este angel olvidado charge qu tu me lanzastes desde la mas alta estrella from the mother of this forgotten angel, sabiendo que un dia sostenerlo no podrian mis whom you cast to me from the highest star, manos. knowing of the day my hands could no longer hold him. 242 APPENDIX A

(Solicitation Letter from Agency to Parents)

Dear Parent:

Claudia L. Moreno is a doctoral student at The Ohio State University who is currently conducting a research about the parental interpretation of autism among Hispanics. The purpose of her research is to develop an understanding of the cultural interpretation of autism in order to develop theory for intervention and therefore services that are sensitive to these parents.

We are wondering if you would like to take part of this research project. Your participation or non-participation would not interfere with your services here at the (program's name) program. Your participation will consist of three interviews. These interviews can be either at your own home, the (program) or any other convenient place that you choose. All the information obtained will be kept strictly confidential. Claudia will not share such information with the (name) program or any other agency or individuals. You will be asked to sign a consent form of your participation in the project. You can withdraw from this project at any time. The information obtained will be used for research purposes only. Please remember that this is not therapy.

Your cooperation with this project will be of great benefit for the Hispanic community as well as other parents who have children with disabilities. We need to develop an understanding of the impact of autism and the provision of services that are sensitive to the Hispanic culture.

If you are interested in participating in this project, please call Claudia L. Moreno at # to set up an appointment for an interview or ask for more information.

Sincerely, (Medical Director) (Pediatrician)

243 APPENDIX B (Interview Guide)

QUESTIONING GUIDE; PARENTAL INTERPRETATION OF AUTISM

1. Opening question: What does autism mean to you?

Reserved questions (to provide structure for material not generated by opening question):

- What is your main concern about your child? - What is your interpretation of your child's behavior? - How has your child's behavior changed you? - What do you think your child has? - What kind of services are you currently receiving? - What services should be made available for parents of children with autism?

244 APPENDIX C (English Version)

INFORMED CONSENT FORM

I ______hereby, consent to participating in the research project entitled "Understanding "El autismo": A qualitative study of the parental interpretation of autism: A Hispanic perspective. "

The purpose of this project is to gather the understanding of parents of children who have been diagnosed as autistic. I understand that I have the right to obtain additional information regarding the study and that any questions I have raised have been answered to my full satisfaction.

As a participant, I understand that the research will include three sessions. Each session will last for approximately two hours. I also give my permission for the researcher to audio-tape these interviews.

I understand that I have the freedom to withdraw from this project at any time and the freedom not to answer or discuss issues I do not want to. I also understand that my participation or non participation will not have an effect on the services currently received at (Hospital's name)

I understand that my name or my child's name will not be used in any publication or professional meeting. Neither any information that I report will be given to any agency. I also understand that all information obtained will be kept confidential and that the taped interviews will be erased after the completition of this project. If necessary any information will be relased only with my written consent.

Signed______Date______(Participant)

Signed______Signed_ (Researcher) (Principal Investigator)

Witness

245 APPENDIX D (SPANISH VERSION)

FORMA DE CONSENTIMIENTO

Yo ______el (la) abajo firmante doy mi consentimiento para participar el el proyecto investigativo, titulado "Understanding "El autismo": A qualitative study of the parental interpretation of autism: A Hispanic perspective".

El proposito de este proyecto es para obtener mas conocimiento sobre los padres/madres de ninos(as) quienes se les ha diagnosticado como autistas. Yo entiendo que tengo el derecho de obtener informacion sobre el estudio y que cualquier pregunta que tenga sera contestada a mi entera satisfaccion.

Como participante, yo entiendo que la investigacion induira très entre vistas. Cada sesion durara aproximadamente dos horas. Tambien doy mi consentimiento para que la investigadora grabe estas entrevistas en casettes de audio.

Yo entiendo que tengo la compléta libertad de retirarme del proyecto a cualquier bora y que tengo la libertad de no contestar o discutir temas que yo no quiera. Tambien entiendo que mi participacion o no participacion en este proyecto tendra algun efecto en los servicios que estoy actualmente recibiendo en el (sitio de la investigacion).

Yo entiendo que mi nombre o el de mi hijo(a) no sera usado en ninguna publicacion o reunion profesional. Tampoco informacion que yo reporte, no sera dada a ninguna agencia. Tambien yo entiendo que toda la informacion obtenida sera mantenida de forma confidencial y que las entrevistas grabadas seran borradas despues de la conclusion de este proyecto. Si es necesario, cualquier informacion sera dada solamente con mi consentimiento por escrito.

Firma Fecha

Firma______Firma______(Investigadora) (Investigador Principal)

T estigo______

246 APPENDIX E

SURVEY

1. Your name:

2. Your age:______your autistic child's age ______Father's age:

3. Your present status: □ single □ married - How many years ______□ separated-How many years ______□ divorced - How many years ______□ widowed - How many years ______□ o th er______

4. How many children do you have including your autistic child?

Boys ______Girls______

5. How many people live at home with you?

6. What is your relationship with them?

247 248

7. What is your present family income?

□ under 4,999 □ 5,000 - 9,999 □ 10,000- 14,999 □ 15,000 - 24,999 □ 25,000 - 34,999 □ 35,000- 49,999 □ 50,000 and over

8. What is your occupation? you ______child's father _

9. Highest grade at school that you attained? you child's father _

10. How long have you been living in USA? you ______child's father

11. What is your country of origin? □ Puerto Rico □ Dominican Republic □ Cuba □ Mexico □ Central America, specify______□ South America. Specify______□ USA □ Other 249

12. How long have you been in this country?

13. What is the child's father countiy of origin? □ Puerto Rico □ Dominican Republic □ Cuba □ Mexico □ Central America , specify______□ South America, specify______□ USA □ Other______

14. How long has the child's father been in this country?

15. Where was you autistic child bom?

16. What is his/her gender? □ male □ female

17. Is your child bilingual? □ yes □ no □ don't know

18. Are you bilingual?

□ yes 250

□ no □ don't know

19. What language does your child understand the most? □ Spanish □ English □ Don't know □ other______

20. What language (s) do you speak at home? □ Spanish □ English □ Spanish/English □ Other______REFERENCES

Akerly, M. S. (1975). The invulnerable parent. Journal of Autism & Childhood Schizophrenia, 5(3), 227-281.

Altheide, D. L., & Johnson, J. M. (1994). Criteria for assessing interpretative validity in qualitative research. In. N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research. Thousand Oaks, CA: Sage.

American Psychiatric Association. (1968). Diagnostic and Statistical Manual of Mental Disorders (2nd ed.). Washington, DC: Author.

American Psychiatric Association. (1980). Diagnostic and Statistical Manual of Mental Disorders (3rd ed.). Washington, DC: Author.

American Psychiatric Association. (1987). Diagnostic and Statistical Manual of Mental Disorders (3rd ed., rev.). Washington, DC: Author.

American Psychiatric Association. (1994). Diagnostic and Statistical Manual of Mental Disorders (4th ed.). Washington, DC: Author.

Ammara. G. L. (1982). Psychose, autisme et déficience mentale (Psychosis, autism and mental deficiency). Revue Canadienne de Psycho Education, 11 (2), 132-141.

Asperger, H. (1968). Zur differential diagnose des kindlichen autismus. (On the differential diagnosis of early infantile autism). Acta Paedopsychiatrica, 35 (4-8), 136-145.

Asperger, H. (1944). Die 'autistichen psychopathen in kendersalter. Archivfur Psychiatrie und Nervebkrankheiten, 117, 76-136.

251 252

Baird, G., Baron-Cohen, S., Bohman, M., Coleman, M., Frith, U., Gillberg, C, Gillberg, C., Howlin, P., Mesibov, G., Peeters, T., Ritvo, E., Steffenburg, S., Taylor, D., Waterhouse, L, Wing, L. & Zapella, M. (1991). Autism is not necessarily a Pervasive Developmental Disorder. [Letter to the editor]. Developmental Medicine and Child Neurology, 33, 363-364.

Baron-Cohen, S. & Bolton, P. (1993). Autism: The facts. New York: Oxford University Press.

Basil, C. (1984). La comunicacion no vocal en el tratamiento de la discapacidad fisica y psiquica grave (nonvocal communication in the treatment of severely physically and cognitive handicapped patients). Revista del Departamento de Psiquiatria de la Facultad de Medicina de Barcelona, 11 (spec), 481-496.

Becerra, R. M., & Zambrana, R. E. (1985). Methodological approaches to research on Hispanics. Social Work, 21 (2), 42-49.

Bender, G. (1959). Autism in children with mental deficiency. American Journal of Mental Deficiency, 64, 81-86.

Bene, E. (1958). A Rorschach investigation into the mothers of autistic children. British Journal o f Medical Psychology, 31, 226-227.

Bemporad, J., Ratey, J. & O'Driscoll, G. (1987). Autism and emotion. American Journal of Orthopsychiatry, 57, (4) 477-484.

Bender, L. (1973). The life course of children with schizophrenia. American Journal of Psychiatry, 130, 783-786.

Benito-Arranz, S. (1983). La echolalia.: Valoracion y sentido en ninos autistas. (Echolalia: Evaluation and meaning in autistic children). Revista de Psiquiatria y Psicologia Medica,16(2), 157-160.

Bettelheim, B. (1967). The empty fortress. New York: Free Press.

Bettelheim, B. (1959). Feral children and autistic children. American Journal of Sociology, 64, 455. 253

Bettison, S. (1974). Simple behavior modification techniques as acids in teaching parents of autistic child-rearing principle. Australian Journal of Mental Retardation. 3 (3), 64-69.

Bhatara, V. (1980). Using DSM-III to clarify the diagnosis: Overlap of autism, mental retardation, and CNS dysfunction. Psychiatric Annals, 70 (8), 31-39.

Eleuler, E. (1919). Das Autistische-Undisziplinierte Denken in der Mediziin und seine Uberwindung. Berlin: Springer.

Bogdan, R. C. & Biklen, S. K. (1992). Qualitative research for education: An introduction to theory and methods (2nd ed.). Boston, MA: Allyn and Bacon.

Bolling-Bechinger, H. (1988). Die bedeutung des trauerns fur die annahme der behinderung eines kindes (the importance of grief in accepting a child's handicap). Praxis der Kinderpsychologie und Kinderpsychiatrie,37(5), 175-179.

Bouchariat, J., & Audrey, B. (1966). A propos de l'autisme chez l'enfant debile. (Apropos of autism in the mentally retarded child). Annates Medico-Psychologiques, (4), 2 532.

Boushel, M. (1994). The protective environment of children: Towards a framework for anti-oppressive, cross cultural and cross-national understanding. British Journal of Social Work, 24, 173-190.

Braconnier, A., & Ferrari, P. (1982). Autism infantile: voies actualles de recherche. Acta Paedopsychiatriaca, 48, 139-147.

Bristol, M. M. (1979). Maternal coping with autistic children: Adequacy of interpersonal support and effects of child's characteristics. University Microfilms International. P.O. Box 1346, Ann Arbor MI. 48106.

Bruey, C.T. (1988, Winter ). Your child has been diagnosed: "Now what"-steps for parents of recently diagnosed children. Outreach: Newsletter fo r parents and adults with autism. (Available from COS AC, Ewing, NJ). 254

Bumbera, R. G. (1973). Infantile autism: The puzzle. Journal of Psychiatrie Nursing and Mental Health Services, 11 (6), 26-28.

Burgoine, E., & Wing, L. (1983). Identical triplets with Asperger's syndrome. British Journal of Psychiatry, 143, 261-265.

Byassee, J. E., & Murrell, S. A. (1975). Interaction patterns in families of autistic, disturbed, and normal children. American Journal of Orthopsychiatry, 45 (3), 473-478.

Canino, G. J., Bird, H. R., Rubio-Stipec, M., Woodbury, M. A., Ribera, J. C., Huertas, S. E. & Sesman, M. J. (1987). Reliability of child prognosis in a Hispanic sample. Journal of the Academy of Child and Adolescent Psychiatry, 26 (4), 560-565.

Casimir, G. J., & Jones, B. (1993). Rethinking work with multicultural populations. Community Mental Health Journal, 29 (6), 547-559.

Cederblad, M. (1988). Behavioral disorders in children from different cultures. Berzelius symposium XI: Transcultural psychiatry (1987, Stockholm, Sweden). Acta Psychiatrica Scandinavica, 78 (344, Suppl.), 85-92.

Cervantes, R. C & Arroyo, W. (1994). DSM-IV: Implications for Hispanic children and adolescents. Hispanic Journal of Behavioral Sciences, 16 (1), 8-27.

Chapman, A. H. (1957). Early infantile autism. American Journal of Disable Child, 99, 783-786.

Chapman, A. H. (1957). Early infantile autism in identical twins: Report of a case. AMA Archives of Neurology and Psychiatry, 78, 621-623.

Cialdella, P., & Mamelle, M. (1989). An epidemiological study of autism in a French department (Rhone): A research note. Journal of Child Psychology and Psychiatry and Allied Disciplines, 30, 165-175.

Clancy, H. & MCBride, G. (1969). The autistic process and its treatment. Journal of Child Psychology & Psychiatry, 70 (4), 233-244. 255

Cohen, D. (1976). The diagnostic process in child psychiatry. Psychiatric Annals, 6 (9). (page).

Cook, S. S. (1988). The impact of the disabled child on the family. Loss, Grie and Care, 2, 45-52.

Copeland, J. (1973). For the love of Ann. New York,NY: Ballantine.

Connors, J. L. (1993). Navajo perceptions of autism and social competence: A cultural perspective. (Doctoral dissertation. University of Wisconsin, 1992). Dissertation Abstracts International, 53/07, p. 2431.

Corbett, J. (1983). Epilepsy and mental retardation: A follow-up study. In M. Parsonage (Ed.), Advancement of epileptology (pp. 207-214). New York XIV Epilepsy International Symposium.

Cotton, P. (1993). Psychiatrists set to approve DSM-IV. The Journal of the American Medical Association, 270(J), 13-15.

Crabtree, B. P., & Miller, W. L. (1992). Doing qualitative research. Newbury Park, CA: Sage.

Creak, M. (1972). The parents of autistic children. Developmental medicine & Child Neurology, 14(5), 659-661.

Cutler, B., & Kozloff, M. (1987). Living with autism: Effects on families and family needs. In D. Cohen & A. Donellan (Eds.) Handbook of autism and pervasive developmental disorder, pp. 513-527. New York: John Wiley & Sons.

Darr, G. C , & Worden, F. G. (1951). Case report twenty-eight years after an infantile autistic disorder. American Journal of Orthopsychiatry, 21, 559-570.

Davids, A. (1975). Childhood psychosis: The problem of differential diagnosis. Journal of Autism & Childhood Schizophrenia, (2), 5 129-138.

Davis, B. H. (1987). Disability and grief. Social Casework, 68 (6), 352-357. 256

de Ajuriaguerra, J. (1986). Problèmes de terminologies utilisées dans les descriptions et les concepts de psychoses infantiles (Problems of the terms used in descriptions and concepts of infantile psychoses). 3rd International Symposium, "The Development of Psychosis at the present Time, 1981, Barcelona, Spain. Enfance, 1 (1), 5-11.

de la Fuente, R. (1980). La prevencion y la intervencion temprana en los desordenes mentales de los ninos en los programas de salud mental. (The prevention of and timely intervention in the mental disorders of children in mental health programs). Salud Mental, 3 (3), 2-5.

DeMyer, M. K., Pontus, W., Norton, J., Barton, S., Allen, J., & Steeled, R. (1972). Parental practices and innate activity in normal, autistic, and brain-damaged infants. Journal of Autism & Childhood Schizophrenia, 2 (1), 49-66.

DeMyer, M. K., Churchill, D. W., Pontius, W., & Gilkey, K. M. (1971). A comparison of five diagnostic systems for childhood schizophrenia and infantile autism. Journal of Autism & Childhood Schizophrenia, (2), 1 175-189.

DeMause, L. (1974). The evolution of childhood: A symposium. History of childhood: The Journal of Psychohistory. 7(4), 503-575.

Denzin, N. K. (1989). Interpretative interactionism. Nevybury Park, CA: Sage.

Despert, J. L. (1951). Some considerations relating to the genesis of autistic behavior in children. American Journal of Orthopsychiatry, 21, 335-350.

Dyer, C. & Hadden, A. J. (1976). A multi-axial classification for the education of autistic children. Child Care, Health & Development, 2 (3), 155-164.

Dytrych, Z.; Tyl, J.; Shuller, V., Helclova, H. & Berankova, A. (1991). Mental and social problems of families with handicapped child. Acta Chirurgiae Plasticae, 33 (3), 166-177.

Eberhardy, F. (1967). The view from "the couch. " Journal of Child Pychology & Psychiatry & Allied Disciplines, 8(3-4), 257-263. 257

Eisenberg, L. (1956). The fathers of autistic children. American Journal of Orthopsychiatry, 26, 556-566.

Eisenberg, L. & Kanner, L. (1956). Childhood schizophrenia symposium, 1956. 6. Early infantile autism, 1943-1955. American Journal of Orthopsychiatry, 26, 236-566.

Erickson, F. (1986). Qualitative methods in research on teaching. In M. C. Wittrock (Ed.), Handbook of research on teaching (3rd ed.). New York, NY: Macmillan.

Erlandson, D. A., Harris, E. L., Skipper, B. L., & Allen, S. D. (1993). Doing naturalistic inquiry: A guide to methods. Newbury Park, CA: Sage.

Fehlow, P., & Tennstedt, A. (1985). Neuropsychiatrische begleitsymptome bei einem fall von Ehlers-Danlos syndrom (On the Ehlers-DanJos syndrome). Psychiatrie, Neurologie undMedizinische Psychologie, 57(4), 215-220.

Factor, D. C., Freeman, N. L. & Kardash, A. (1989). Brief report: A comparison of DSM-III and DSM-III-R criteria for autism. Journal of Autism and Developmental Disorders, 4, 637-640.

Feinstein, A. (1993). Editorial: ICD-10. International Journal of Social Psychiatry, 39 (3), 157-158.

Ferster, C. B. (1961). Positive reinforcement and behavioral deficits of autistic children. Child Development, 32, 437-456.

First, M. B. (1992). Trends in psychiatric classification: DSM-III-R to DSM-IV. Psychiatria Hungarica, 7 (6), 539-546.

Frith, U. (1993). Autism. Scientific American, I\m&.

Flagg-Williams, J. B. (1991). perspectives on working with parents of handicapped children. Psychology in the Schools, 28(3), 238-246. Fontana, A. & Frey, J. H. (1994). Interviewing: The art of science. In. N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research. Thousand Oaks, CA: Sage.

Frey, K. S., Greenberg, M. T. & Fewell, R. R. (1989). Stress and coping among parents of handicapped children: A multidimensional approach. Special Issue: Research on families. American Journal on Mental Retardation, 94 (3), 240-249.

Freud, S. (1957). Mourning and melancholia (1917). In J. Rickman & C. Brenner (Eds.), A general selection from the works of Sigmund Freud. Garden City, NY: Doubleday Anchor Books.

Gebelt, H. (1983). Der fmhkindliche autismus aus verbal tensbiologischer und neurophysiologischer sicht (The early infantile autism at sight of the behaviourbiology and the neurophysiology. Psychiatrie, Neurologie und Medizinische Psychologie, 55 (1), 1-9.

Gesell, A. (1941). Wolf child and human child. New York: Viking.

Gillberg, C. (1991). Outcome in autism and autistic-like conditions. Special section: Longitudinal research. Journal of the American Academy of Child and Adolescent Psychiatry, 30 (3), 375-382.

Gillberg, C. (1990). What is autism. International Review of Psychiatry, 2 (1), 61-66.

Gillberg, C. (1989). Asperger syndrome in 23 Swedish Children. Developmental Medicine and Child Neurology, 31 (4), 520-531.

Gillberg, C. (1984). Infantile autism abd other childhood psychoses in a Swedish urban region: Epidemiological aspects. Journal of Child Psychology and Allied Disciplines, 25(1), 35-43.

Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago: Aldine.

Glatzel, J. (1981). Sobre el autismo maniaco (Manic autism). Psicopatologia, 1 (1), 19-24. 259

Glesne, C., & Peskin, A. (1992). Becoming qualitative researcher: An introduction. White Plains, NY: Longman.

Goldenson, R. M. (1984). Longman dictionary of psychology and psychiatry. New York, NY: Longman.

Golfarb, W. (1961). Childhood schizophrenia. Cambridge, MA: Harvard University Press.

Goodall, K. (1971). Childhood autism-Don't blame the parents. Psychology Today, 5 (4), 8-10.

Goodman, R. (1989). Infantile Autism" a syndrome of multiple primary deficits?. Journal of Autism and Developmental Disorders. 19, 409-424.

Gray, D. E. (1993). Negotiating autism: Relations between parents and treatment staff. Social Science and Medicine, 36 (8), 1037-1046.

Gray, D. E., & Holden, W. J. (1992). Psycho-social well-being among the parents of children of children with autism. Australia and New Zealand Journal of Developmental Disabilities, (2), 18 83-93.

Green, W. H., Campbell, M., Hardesty, A. S., Grega, D. M., Padreon-Gayol, M., Shell, J., & Erlenmeyer-Kimling, L. (1984). A comparison of schizophrenic and autistic children. Journal of the American Academy of Child Psychiatry, 23 (4), 399-409.

Greenfield, J. (1972). A child called Noah. New York, NY; Holt, Rinehart and Winston.

Grodzka, M., Szumbarska, D., & Puzynska, E. (1992). Autyzm wczenodzieciecy aspekty diagnostyczne (Early childhood autism: Diagnostic aspects. Psychaitria Polska, 26 (6), 461-468.

Goldstein, H. (1994). Ethnography, critical inquiry, and social work practice. In E. Sherman and W. J. Reid (Ed.) . Qualitative research in social work. New York: Columbia University Press. 260

Guba, E. G., & Lincoln, Y. S. (1994). Competing paradigms in qualitative research. In. N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research. Thousand Oaks, CA: Sage publications Inc.

Guendel, H., & Rudolph, G. A. (1993). Schizophrenic autism: Historical evolution and perspectives. Psychopathology, 26(5-6-), 294-303.

Halpern, D. (1993). Minorities and mental health. Social Science and Medicine, 36 (5), 597-607.

Haslam, J. (1809). Observations on madness and melancholy. London: Hayden.

Holroyd, J. B., Brown, N., Wilder, L., & Simmons, J. (1975). Stress in families of institutionalized and noninstitutionalized autistic children. Journal of Community Psychology, (1), 3 23-31.

Honio, S. (1984). A bibliographic study of the concept of the borderline child. Japanese Journal of Child and Adolescent Psychiatry, 25(5), 303-312.

Humm-Delgado, D., & Delgado, M. (1986). Gaining community entry to assess service needs of Hispanics. Social Casework: The Journal of Contemporary Social Work, 67(2), 80-89.

Hundley, J. M. (1971). The small outsider: The story of an autistic child. New York, N.Y.: St. Martin’s Press Inc.

Ishikawa, A., Ishizaki, A. & Fukuyama, Y. (1984). Stereotyped movements of handicapped children. Research and Clinical Center for Child Development: 1983-84 Annual Report, 57-62.

Itard, J.M.G. (1801). The wild boy ofAveyron. English translation of two reports by G. and M. Humphrey, 1932. New York: Appleton CenturyCrofts, 1962.

Jackson, H. (1983). Current trends in the treatment of phobias in autistic and mentally retarded persons. Australia and New Zealand Journal of Developmental Disabilities, 9 (4), 191-208. 261

Jorgensen, D. L. (1989). Participant observation: A methodology for human studies. Newbury Park, CA: Sage.

Jorgensen, U. S., Nielsen, K. B., Isager, T., & Mouridsen, B. E. (1984). Fragile X chromosome among child psychiatric patients with disturbances of language and social relationships: A pilot study. Acta Psychiatrica Scandinavica, 70(5), 510-514.

Kapur, S. O. (1989). Infantile autism: Case studies. NIMHANS Journal,7{l), 87-90.

Kaimer, L. (1973). Childhood psychosis: Initial studies and new insights. Washington, DC: V. H. Winston & Sons.

Kanner, L. (1971). Follow-up study of eleven autistic children originally reported in 1943. Journal of Autism and Childhood Schizophrenia, (2), 1 119-145.

Kanner, L. (1949). Problems of nosology and psychodynamics of early infantile autism. American Journal of Orhtopsychiatry, 19, 416-426.

Kanner, L. (1944). Early infantile autism. Journal of Pediatrics, 25, 211-217.

Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217-250.

Kanner, L. (1941). In defense of mothers. Springfield 111: Charles C. Thomas.

Kaufman, B. N. (1976). Son rise. New York, N. Y.: Haper andRow Publishers.

Kincheloe, J. L., & McLaren, P. L. (1994). Rethinking critical theory and qualitative research. In. N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research. Thousand Oaks, CA: Sage.

Krener, P. G., & Sabin, C. (1985). Indochinese immigrant children: Problems in psychiatric diagnosis. Journal of the American Academy of Child Psychiatry, 24 (4), 453-458. 262

Kraeplin, E. (1902). Clinical psychiatry: A textbook for students and physicians. In A. R. Diefendorf (Ed. and trans.). (abstracted and adapted from the 6th Germand ed. of Kkraeplin's "Lehrbuch der Psychiatrie," i.e . Psychiatrie: Ein lehrbuch fur studieerende und Arztel). New York: Mcmillan.

Kolvin, I., Garside, R., & Kidd, J. (1971). Parental personality and attitude and childhood psychosis. British Journal of Psychiatry, 403-406.

Kubler-Ross, E. (1969). On death and dying. New York: Macmillan.

Kuo-Tai, T. (1987). Brief report: Infantile autism in China. Journal of Autism and Developmental Disorders, 17(2), 289.

Kutchins, H. & Kirk, S. A. (1993). DSM-IV and the hunt for gold: A review of the treasure map. Research on Social Work Practice, 3(2), 219-235.

Kvale, S. (1989). To validate is to question. In S. Kvale (Ed). Issues of validity in qualitative research (pp 73-92). Sweden: Studentlitterarure.

Lantz, J. (1993). Existential family therapy. Northvale, NJ: Jason Aronson Inc.

Lantz, J., & Pegram, M. (1989). Cross cultural curative factors and clinical social work. Journal of independent Social Work, (1), 4 55-68.

Lather, P. (1991). Getting samart: Feminsit research and pedagogy withlin the postmodern. New York, NY: Routedge, Chapman and Hall, Inc.

Lebedinskaya, K. S., & Nikolskaya, O. S. (1993). Analysis of autism and its treatment in modem Russian defectology. Journal of Autism and Developmental Disorders, 23 (4), 675-679.

Leonard, J. H. (1986). Families and autism: An ethnographic approach (Doctoral dissertation, Columbia University Teachers College, 1986). Dissertation Abstracts International, 47, 2333A. 263

Lequerica, M. (1993). Stress in immigrant families with handicapped children: A child advocacy approach. American Journal of Orthopsychiatry, 63 (4), 545-552.

Li, S. Y.; Chen, Y. C. J.; Lai, T. J.;Hsu, C. Y. & Wang, Y. C. (1993). Molecular and cytogenetic analyses of autism in Taiwan. Human Genetics, 92 (5), 441-445.

Lincoln, Y.S., & Guba, E.G. (1985). Naturalistic Inquiry. Newbury Park, CA; Sage.

Lopez, S. (1981). Mexican Americans' usage of mental health facilities: Underutilization reconsidered, in A. Baron (Ed.), Explorations in Chicano psychology. New York: Praeger.

Lordi, W. M., & Silverberg, J. (1965). Infantile autism: A family approach. International Journal of Group Psychotherapy,(3), 14 360-365.

Lotter, V. (1978). Childhood autism in Africa. Journal of Child Psychology and Psychiatry, 19, 231-244.

Lovell, A. (1978). In a summer garment: The experience of an autistic child. London: Martin Seeker and Warburg.

Lowe, L. H. (1966). Families of children with early childhood schizophrenia: Selected demographic information. Archieves of General Psychiatry, 14 (1), 26-30.

Maes, B., Fryns, J. P., Van-Walleghem, M., Van-Den-Berghe, H. (1993). Fraxile X syndrome and autism: A prevalent association or a misinterpretated connection? Genetic Counselig, 4(4), 245-263.

Marin, G. (1993). Defining culturally appropriate community interventions: Hispanics as a case study. Journal o f Community Psychology, 21, 149-161.

Martos-Perez, J. & Del-Sol-Fortea-Sevilla, M. (1993). Psychological assessment of adolescents and adults with autism. Journal of Autism and Developmental Disorders, 23 (4), 653-664. 264

Mandel, H. P., Marcus, S. I., Roth, R. M. & Berenbaum, H. L. (1971). Early infantile autism: A pre-ego psychopathology and case report. Psychotherapy: Theory, Research & Practice, 5 (2), 114-119. Matocha, L. K. (1992). Case study interviews; caring for persons with AIDS. In J. F. Gilgun, K. Daly, & Handel, G. (Eds.). Qualitative methods in family research. Newbury Park, CA: Sage.

McAddo, W. G., & DeMayer, M. K. (1979). Research related to family factors in autism. Journal of Pediatric Psychology, (4), 2 162-166.

Meyer, C. H., (1995). The ecosystems perspective: Implications for practice. In C. H. Meyer & Mattani, M. A. (Eds.). The foundations of social work practice. Washington, DC: National Association of Social Social Workers.

Moore, D. J., & Shiek, D. A. (1971). Toward a theory of early infantile autism. Psych dogical Review, 75 (5), 451-456.

Moreno, C. L. (1989). Hispanic parent's perception of autism. Unpublished manuscript, Rutgers, The State University of New Jersey, Department of Social Work, New Brunswick.

Montoli-Perani, R. (1993). The research into autism, from the therapist room: Brief records of protomental functions of psychic exchange observed during the treatment. Giornale di Neuropsichiatria delVEta Evolutiva, 13 (3), 201-207.

Morgan, S. B. (1988). The autistic child and family functioning: A developmental family systems perspective. Journal of Autism and Developmental Disorders, 18, 263- 280.

Nesnidalova, R. (1972). The diagnosis and differential diagnosis of infantile autism. Ceskoslovenska Psychiatrie, 68 (4), 235-243.

Ney, P. G. (1979). A psychopathogenesis of autism. Child Psychiatry and Human Development, 9(4), 195-205. 265

Nikolic, S. (1984). Grupna psihoterapiia roditelia kao oblik obiteliskog pristupa ulijecenju autisticne diece (group psychotherapy of parents as a form of family approach). Socijalna Psihijatria, 12 (4), 303-314.

Ogdon, D. P., Bass, C.L., & Thomas, E. R. (1968). Parents of autistic children. American Journal of Orthopsychiatry, 38, 653-658.

Ohta, M., Nagai, Y., Kara, H. & Sasaki, M. (1987). Parental perception of behavioral symptoms in Japanese autistic children. Journal of Autism and Developmental disorder, 17, 549-563.

Orr, R. R., Cameron, S. J., Dobson, L. A., & Day, D. M. (1993). Age related changes in stress experienced by families with a child who has developmental delays. Mental retardation, 31 (3), 171-176.

Ornitz, E. M. (1970). Vestibular dysfunction in schizophrenia and childhood autism. Comprehensive Psychiatry, 11 (2), 159-173.

Ortnitz, E. M., & Ritvo, E. R. (1968). Neurophysiologic mechanisms underlying perceptual inconstancy in autistic and schizophrenic children. Archieves of General Psychiatry, 22-27.

Park, C. C. (1982). The siege: The flsrt eight years of an autistic child. With an epilogue: Fifteen years after (2nd ed). Boston, MA: Atlantic-Little, Brown.

Parrish, M. C. (1969). Parents of autistic children: Their common needs and attitudes. Corrective Psychiatry & Journal of Social Therapy, (4), 15 14-19.

Patton, M. Q. (1990). Qualitative evaluation and research methods (2nd ed.). Newbury Park, CA: Sage.

Pedreira-Massa, J. L. (1992), Evaluacion del autismo y de las psicosis en la infancia: Revision y protocolo actualizados (Assessment of autism and psychosis in children: Review and protocols). Psiquis Revista Psiquiatrica, Psicologia y Psicosomatica, (3), 13 23-42. 266

Perez-Gomez, A. (1982). Algunas dimensiones de la esquizofrenia (Some aspects of schizophrenia). Perspectivas en Psicologia, 7(1), 3-17.

Pieper, E. J. (1978). Stick and stones: The story of a loving child. Syracuse, NY: Honor Policy Press.

Piperno, R. (1982). Verso un modello di inverto con pazienti psicotici gravi. (Seeking a model of intervention with patients suffering from serious psychoses). Terapia Familiare, 11, 5-23.

Prior, M. (1984). Developing concepts of childhood autism: The influence of experimental cognitive research. Journal of Consulting and Clinical Psychology, 52, (1), 4-16.

Rasmussen, M., & Sponheim, E. (1993). Asperger's syndrome. Tidsskriftfor den Norske Laegeforening, 113 (22)., 2807-2810.

Ricks, D. (1989). Child autism: II. differential diagnosis. NIMHANS Journal, 7(1), 71-75.

Rimland, B. (1994). The modem history of autism: A personal perspective. In Matson, J. L. (ed). Autism in Children and Adults: Etiology, Assessment and Intervention. Pacific Grove: CA, Brooks/Cole Publishing.

Rimland, B. (1964). Infantile autism. New York, NY: Appleton-Century-Crofts.

Ritvo, E. R., & Freeman, B. J. (1977). National Society for Autistic Children: Definition of the syndrome of autism. Journal of Pediatric Psychology, 2 (4), 146-148.

Rodrigue, J. R., Geffken, G. R., & Morgan, S. B. (1993). perceived competence and behavioral adjustment of siblings of children with autism. Journal of Autism and Developmental Disorders, 23(4), 665-674.

Rodrigue, J. R., Morgan, S. B., & Geffken, G. (1990). Families of autistic children: Psychological functioning of mothers. [Special Issue: The stresses of parenting]. Journal of Clinical Child Psychology, (4), 19 371-379. 267

Rogler, L. H. (1993). Culture in psychiatrie diagnosis: An issue of scientific accuracy. Psychiatry: Interpersonal and Biological Processes, 56(4), 324-327.

Rowlands, P. (1972). The fugitive mind. London: J. M. Dent and Sons.

Roy, M. A. (1974, May). A formula for early infantile autism. A tutorial presented at the Rockey Mountain Psychological Association Meeting, Denver, Colorado.

Rutter, M. (1972). Childhood schizophrenia reconsidered. Journal of Autism and Childhhod Schizophrenia, 2 (4), 315-337.

Rutter, M. (1983). Cognitive deficits in the pathogenesis of autism. Journal of Child Psychology and Psychiatry, 24, 513-531.

Rutter, M. & Schopler, E. (1992). Classification of Pervasive Developmental Disorders: Some concepts and practical considerations. Journal od Autism and Developmental Disorders, 22 (4), 459-482.

Sanua, V. D. (1986). A comparative study of opinions of U.S.A. and european professionals on the etiology of infantile autism. The International Journal of Social Psychiatry, 32(2), 16-30.

Sanua, V. D. (1985). Etiologie organique de l'autisme infantile (syndrome de Kanner): Faits scientifiques ou opinions? (An organic etiology for infantile autism (Kaimer syndrome): Scientific evidence or opinions? Semaine des Hôpitaux, 67(27), 2015-2018.

Sanua, V.D. (1984). Is infantile autism a universal phenomenon? An open question. The International Journal of Social Psychiatry, (3), 30 163-177.

Sanua, V. D. (1983). Infantile autism and childhood schizophrenia: Review of the issues from the sociocultural point of view. Social Science and Medicine, 77(21), 1633-1651. 268

Sanua, V. D. (1981). Cultural changes and psychopathology in children: With special reference to infantile autism. Acta Paedopsychiatrica, 47 (3), 133-142.

Sanua, V. D. (1980, September). Economic status and cultural background of parents of autistic children. Paper presented at the American Psychological Association Aimual Convention, 88th Montreal, Canada.

Sanua, V.D. (1979, September). Cultural changes and psychopathology in children: With special reference to infantile autism. Paper presented at a Symposium of the American Psychological Association (New York, NY, September 4, 1979).

Schain, R. J., & Yarmet, H. (1960). Infantile autism. Journal of Pediatrics, 57, 560-567.

Schopler, E. (1994). Neurobiologie correlates in the classification and study of autism. In Broman, S. H. & Grafinan, J. (Eds.) Atypical cognitive deficits in developmental disorders: Implications for brain function. Hillsdale, NJ: Lawrence, Erlbaum Associates, Publishers.

Schopler, E. (1971). Parents of psychotic children as scapegoats. Journal of Contemporary Psychotherapy, (1), 4 17-22.

Schreibman, L., Charlop, M. H., Mlstein, J. P., (1993). The behavioral approach to the treatment of autism. In V. Van Hasselt & Hersen, M. (Eds.). Handbook of behavior therapy and pharmacotherapy for children. Boston, MA: Allyn & Bacon.

Schreibman, L. (1988). Autism. Newbury Park: Sage.

Schumann, W. (1966). Zur problematik des kindlichen autismus un der psychologischen nosologie. (On the problems of children's autism and psychological nosology). Praxis der Kinderpsychologie und Kinderpsychiatrie, 15 (5), 168-175.

Seo, G. H. (1992). Cross-cultural study of autism in South Korea and the United States (Doctoral dissertation. University of Texas at Austin). Dissertation Abstracts International, 52/09, p. 3246. 269

Silvestrini, A. (1993). New psychotherapeutic and rehabilitation strategies on the territory: experiences with a summer camp for young psychotic patients. Quaderni Italiani di Psichiatria, 12 (5), 405-418.

Slater, M. A., & Wilder, L. (1986). Normalized family resources for families with developmentally disabled child. Social Work, 31 (5), 385-390.

Snyder, S. U. (1992). Interviewing college students about their constructions of love. In J. F. Gilgun, K. Daly, & Handel, G. (Eds.) Qualitative methods in family research. Newbury Park, CA: Sage.

Stepheson, P. (1976). What is an autistic child? Canada's Mental Health, 24 (4), 5-7.

Stern, E. & Schachter, M. (1953). Zum problem des fruhkinlichen autismus. (On the problem of infantile autism). Prax. Kinderpsycholo. Kinderpsychiat., 2, (5-6), 113-119.

Steffenberg, S. (1991). Neuropsychiatrie assessment of children with autism: A population based study. Developmental Medicine and Child Neurology, 33, 495-511.

Steffenburg, S., & Gillberg, C. (1986). Autism and autistic-like conditions in Swedish rural and urban areas: A population study. British Journal of Psychiatry, 149, 81-87.

Stoudemire, A. (1993). Psychological factors affecting physical condition and DSM-IV. Psychosomatics, 34iX), 8-11.

Strauss, A. L., & Corbin, J. (1990). Basics of qualitative research: grounded theory procedures and techniques. Newbury, CA: Sage.

Sue, S. & Zane, N. (1987). The role of culture and cultural techniques in psychotherapy. American Psychologist, 42, 37-45.

Sutton, H. E., & Read, J. H. (1958). Abnormal amino acid metabolism in a case suggesting autism, American Disable Child, 96, 23-28. 270

Szabo, C. P. & Aber, D. (1992). Neglect of Asperger's syndrome. Journal of the American Academy of Child and Adolescent Psychiatry, 31 {6), 1171.

Szweck, G. (1983). A propos de la plurifocalite des lieux d'accueil et de soins (Considerations of the multifaceted approaches to the treatment of childhood psychoses found in child care institutions). Neuropsychiatrie de 'lEnfance et de l ’Adolescence, 31(5-6), 276-278.

Takahashi, A. (1961). On psychotic symptoms (especially the autistic tendency) of mentally retarded children. Japanese Journal of Psychiatry, 50-57. 1,

Takatomi, T., Suzuki, K., Dendo, H., & Watanabe, T. (1974). Families of autistic children. Journal of Mental Health, 48 (22), 95-112.

Tonge, B. J., Dissanayake, C., & Brereton, A. V. (1994). Review article; Autism: Fifty years from Kanner. Journal ofPaediatics and Child Health, 30, 102-107.

Tsai, L. Y. (1992). Is Rett syndrome a subtype of pervasive developmental disorders? Special issue: Classification and diagnosis. Journal of Autism and Developmental Disorders, 22 (4), 551-561.

Vaillant, G. E. (1962). John Haslam on early infantile autism. American Journal of Psychiatry, 199, 356.

Van Krevelen, D. A. (1973). Problems of differential diagnosis between mental retardation and autismus infantum. Act Psychiatrica, 89, (8-9-10), 199-203.

Volkmar, F. R. (1992). Childhood disintegrative disorder: Issues for DSM-IV. Special Issue: Classification and Diagnosis. Journal of Autism and Developmental Disorders, 22 (4), 625-642.

Wale, D. (1978). Differential diagnosis in the treatment of autism. Special Education In Canada, 52 (4), 7-9.

Wallen, J. (1992). Providing culturally appropriate mental health services for minorities. The Journal of Mental Health Administration, 19 (3), 288-295. 271

Weber, D. (1966). Zur atiologie autistischer syndrome des kindesalters. (The etiology of the autistic syndrome in childhood). Praxix der Kinderpsychologie und kinderpsychiatrie, 15{\), 12-18.

Wesiner, T. S., Beizer, L., & Stolze, L. (1991). Religion and families of children with developmental disabilities. American Journal on Mental Retardation, 95, 647-662.

Weiss, S. J. (1991). Personality adjustment and social support of parents who care for children with Pervasive Developmental Disorders. Archieves of Psychiatric Nursing, 5 (1), 25-30.

Willner-Selma, D. (1986). Living with a handicapped child: The parents perception. Dissertation Abstracts International, 45(1), p. 219.

Wing, L. (1992). Is autism a pervasive developmental perspective? European Child and Adolescent Psychiatry, 1 (2), 130-131.

Wing, L. (1976). Diagnosis, clinical description, and prognosis. In L. Wing (Ed.), Early childhood autism: Clinical, educational and social aspects (2nd Ed.). Oxford:Pergamonn Press.

Wolcott, H. F. (1994). Transforming qualitative data: description, analysis and interpretation. Thousand Oaks: CA, Sage.

Wright, H. H., Holmes, G. R., Cuccaro, M. L., Abramson, R. K., & Smith, M. (1993). Autism a selected 1990-1992 bibliography. Perceptual and Motor Skills, 77, 1363-1385.