EXPLORING THE ATTITUDES OF PARENTS OF YOUNG CHILDREN WITH
AUTISM TOWARDS THE TEACCH CONCEPTUAL MODEL:
A NARRATIVE CASE STUDY
by
NATALIE LYNNE POWELL
A Dissertation Submitted to the Faculty
in the Curriculum and Instruction Program
of Tift College of Education
at Mercer University
in Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF PHILOSOPHY
Macon, GA
2012 UMI Number: 3528454
All rights reserved
INFORMATION TO ALL USERS The quality of this reproduction is dependent upon the quality of the copy submitted.
In the unlikely event that the author did not send a complete manuscript and there are missing pages, these will be noted. Also, if material had to be removed, a note will indicate the deletion.
UMI 3528454 Published by ProQuest LLC 2012. Copyright in the Dissertation held by the Author. Microform Edition © ProQuest LLC. All rights reserved. This work is protected against unauthorized copying under Title 17, United States Code.
ProQuest LLC 789 East Eisenhower Parkway P.O. Box 1346 Ann Arbor, Ml 48106-1346 © Natalie L. Powell
2012
All Rights Reserved DEDICATION
For my husband, Andrew.
Thank you for holding my hand on this journey.
iv ACKNOWLEDGEMENTS
To Dr. A1 Stramiello, my committee chair, for your support and honest advice over the years. Your encouragement and wisdom have had a profound on my life.
To Dr. Sybil Keesbury and Dr. Theodora Berry, my committee members, for your feedback and suggestions. This dissertation would not have been possible without you.
To Sheila and Jim Shields, Melissa and Gary Register, and Kay and Roy Powell, my parents and in-laws, for believing in me. It is only through your support and prayers that I have accomplished this task.
To my siblings, family, and friends, for cheering me on through the years.
To Dr. Catherine Bishop Gardner, my colleague, for your continuous pep talks.
You made this ride a little bit less bumpy.
Finally, to the parents of children with autism who participated in this study.
Thank you for sharing your thoughts with me.
v TABLE OF CONTENTS
Page
DEDICATION iv
ACKNOWLEDGEMENTS v
LIST OF TABLES ix
LIST OF APPENDICES x
ABSTRACT xi
CHAPTER
1. INTRODUCTION TO THE STUDY 1
Conceptual Underpinning for the Study 3 The Culture of Autism 3 Disability Theory 5 Statement of the Problem 8 Purpose of the Study 11 Research Questions 12 Primary Research Question 12 Secondary Research Questions 12 Rationale 12 Significance 13 Methodology 14 Limitations, Assumptions, and Design Controls 16 Definition of Key Terms 17 Summary 20
2. REVIEW OF RELATED LITERATURE 21
Autism Spectrum Disorders 22 Treatment and Intervention 26 Applied Behavior Analysis 28 Parents with Children with Autism 37 Benefits of Parent Involvement in Intervention 45
vi Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH) Philosophy 47 Parent Attitudes 49 Disability Theory and Parent Attitudes 59 Parent Views of Intervention Programs 61 Narrative Case Study 63 Conclusion 65
3. RESEARCH DESIGN AND METHODOLOGY 67
Problem and Purpose Overview 68 Research Questions 69 Primary Research Question 69 Secondary Research Questions 69 Population and Sample 69 Data Collection and Instrumentation 71 Materials 71 Procedures 72 Electronic Questionnaires 72 Data Analysis 74 Summary 76
4. RESULTS 77
Participants 78 Results of Data Analysis 79 Interview Questions 80 Phase 1: Making the Text Manageable 82 Research Problem and Theoretical Framework 82 Relevant Text 84 Phase 2: Hearing What Was Said 88 Repeating Ideas 88 General Themes 91 Phase 3: Developing Theory 93 Theoretical Constructs 93 Theoretical Narrative 94 Summary 101
5. SUMMARY, CONCLUSIONS, AND RECOMMENDATIONS 103
Overview of Methodology 103
vii Findings for Research Questions 104 Limitations 113 Conclusions 114 Recommendations 117 Recommendations for Professionals 117 Recommendations for Parents of Young Children with Autism 118 Recommendations for Research 119 Closing Statement 119
APPENDICES
A: INTERVIEW QUESTIONS 121
B: INSTITUTIONAL REVIEW BOARD APPROVAL LETTER 123
C: PARENT INFORMED CONSENT FORM 124
REFERENCES 126
viii LIST OF TABLES
Table Page
1. Phase 1: Relevant Text for Participant A 85
2. Phase 1: Relevant Text for Participant B 86
3. Phase 1: Relevant Text for Participant C 87
4. Phase 2: Repeating Ideas 89
5. Phase 2: Themes 93
6. Phase 3: Theoretical Constructs 94
7. Theoretical Constructs, Themes, and Repeating Ideas Related to Addressing Research Question 1 105
8. Data Pertaining to the Primary Research Question 107
ix LIST OF APPENDICES
Appendix Page
A. Interview Questions 85
B. Institutional Review Board Approval Letter 86
C. Parent Informed Consent Form 87
x ABSTRACT
NATALIE LYNNE POWELL EXPLORING THE ATTITUDES OF PARENTS OF YOUNG CHILDREN WITH AUTISM TOWARDS THE TEACCH CONCEPTUAL MODEL: A NARRATIVE CASE STUDY Under the direction of DR. ALBERT STRAMIELLO
The purpose of this dissertation is to explore the attitudes of parents of young children with autism towards the Treatment and Education of Autistic and related
Communication Handicapped Children Program's (TEACCH) conceptual model, known as the Culture of Autism. One primary research question guided the study: What are the attitudes of parents of young children with autism towards the TEACCH conceptual model, the Culture of Autism? Three additional secondary research questions were also considered: How do parents of young children with autism interpret the meaning of the
Culture of Autism? To what extent do parents of young children with autism agree or disagree with the TEACCH conceptual model, known as the Culture of Autism? What experiences have the parents had with the TEACCH program that has affected their attitudes regarding the TEACCH conceptual model, known as the Culture of Autism?
This qualitative study utilized a narrative case study approach in order to explore the parent attitudes. An electronic questionnaire was given to three parents of children with autism between the ages of 3 and 7. The data was analyzed using Auerbach and
Silverstein's (2003) coding method, which included (1) filtering the text by revisiting the
xi research problem and theoretical framework, (2) identifying relevant text, (3) organizing relevant text into repeating ideas, (4) forming themes, (5) grouping themes into theoretical constructs, and (6) create the theoretical narrative. The four themes that emerged were: acceptance, perspective, hope, and fear. It was concluded that all three parents questioned had positive attitudes towards the TEACCH conceptual model.
xii CHAPTER 1
INTRODUCTION TO THE STUDY
The researcher's deep interest with autism spectrum disorders began as she watched an informational video while a sophomore undergraduate student. Her interest in the field grew as she began a fieldwork experience that same year in a preschool classroom of students with autism. The months that she spent working with those young children with autism led her to the decision that she wanted to pursue a teaching position in a similar classroom after graduating. Ironically, she was given the opportunity to teach that actual class upon graduation from college. As an educator of low-functioning students with autism for the next 4 years, she continued to learn about the characteristics of autism and various intervention techniques to be used with people with autism. She was especially interested in one program in particular, the Treatment and Education of
Autistic and related Communication Handicapped Children (TEACCH)1 program.
The TEACCH program was developed by Division TEACCH at the University of
North Carolina in Chapel Hill. Division TEACCH is a statewide program for people with autism or other similar developmental disorders and their families. The program provides diagnostic, evaluation, early intervention, treatment, and assists in residential and work
'Regarding acronyms, this researcher has chosen to use the full expression of an acronym if found necessary.
1 2 placements. TEACCH was founded in 1966 by Eric Schopler and Robert Reichler, along with the help of several parents of children with autism (Watson, 1985). At that time, parents petitioned the state legislature to make this program a part of the state educational structure. TEACCH is operated by five regional centers and over 50 classrooms, serving over 250 children throughout the state. TEACCH is known around the world for its use of structured teaching, visual structure, and individual work tasks, often referred to as
"shoebox tasks" (Watson, 1985).
Another important factor of the TEACCH program was the collaboration between educators and families (Mesibov, Shea, & Schopler, 2004). In the 1960s, most theorists blamed parents for their child being autistic. It was thought that a child became autistic because they were not given enough attention or physical comforting. TEACCH was partially developed in reaction to this idea, and placed an emphasis on parents taking a role as "co-therapists" (Mesibov et al., 2004). TEACCH also differed from many other treatment programs in that it did not include the goal of curing the individual with autism, but instead involved a respect for the individual's differences and a search to assist the individual in being as successful as possible in society (Mesibov & Shea, 1998).
Educators who are trained to use TEACCH are taught to focus on unobservable variables, including the students' cognition or how they understand their environments, in addition to their behavior (Jennett, Harris, & Mesibov, 2003). The TEACCH program is centered on five core values, which form its conceptual model and philosophy. These core values include the following: understanding and appreciating people with autism spectrum disorders, having a commitment to excellence and strong work ethic, not standing on ceremony or becoming overly impressed by their status, having a spirit of 3 cooperation and collaboration, and looking for the best in others, as well as themselves
(Mesibov et al., 2004).
While an educator of young children with autism, the researcher attended a
TEACCH training course at the University of North Carolina-Chapel Hill and effectively implemented the program in her classroom. She also began working individually with children in their homes; setting up the structure of the home to best fit the child's needs, and working with the parents to incorporate TEACCH interventions in their homes. The researcher witnessed that many of the parents who she encountered were hoping for a
"cure" for autism. They wanted their child to be "normal" and not be exposed to struggles and suffering. On the other hand, some parents spoke of the benefits and the positive effects that their child's autism had on their own lives. Through her involvement with the
TEACCH program and with parents of children with autism, the researcher became interested in the parents' feelings and attitudes towards their child's diagnosis and the available interventions, particularly the TEACCH program. Specifically, she became keenly interested about their attitudes towards the TEACCH conceptual model. By examining parent attitudes, the researcher hoped to enable educators and other professionals who work with families of people with autism to gain some additional insight into the families that they work with, thus allowing them to communicate more effectively and better meet the needs of the parents and the children with autism.
Conceptual Underpinning for the Study
The Culture of Autism
TEACCH developed its own conceptual framework for understanding autism spectrum disorders, which is referred to as the Culture of Autism. Shea and Mesibov, the 4 latter being the former director of TEACCH, first described this conceptual model in their
1998 article "The Culture of Autism: From Theoretical Understanding to Educational
Practice." While autism is not a true culture, "it yields characteristic and predictable patterns of thinking and behavior in individuals with this condition" (Mesibov et al.,
2004, p. 19). In order to meet the needs of the persons with autism and to assist them in making the most progress, educators or other professionals must understand the Culture of Autism and behave as a translator between that individual and the "typical" world that people live in. As stated previously, the values that form the TEACCH conceptual model, known as the Culture of Autism, include understanding and appreciating people with autism spectrum disorders, having a commitment to excellence and strong work ethic, not standing on ceremony or becoming overly impressed by their status, having a spirit of cooperation and collaboration, and looking for the best in others, as well as themselves
(Mesibov et al., 2004).
According to Mesibov et al. (2004), their conceptual model has "facilitated comprehension of autism spectrum disorders by parents and professionals" (p. v).
TEACCH outlined several characteristics of autism. Those included differences in thinking, such as differences in the concept of meaning, the focus on details, distractibility, concrete versus abstract thinking, combining or integrating ideas, organization and sequencing, generalization, and time. Differences in learning included visual and auditory learning and prompt dependence. Differences in neurobehavioral patterns included strong impulses, excessive anxiety, and sensory and perceptual differences. TEACCH also developed a set of manifestations of the Culture of Autism, such as attachment to routines, tantrums and aggression, limited social skills and 5 emotional empathy, limited play skills, difficulty with initiation, and noncompliant behavior. Specific strategies developed to assist people with autism in functioning include careful, ongoing assessment, using their strengths and interests, and family collaboration (Mesibov et al., 2004). In 1998, Mesibov and Shea summed up the
TEACCH philosophy and purpose by stating:
Because the organically-based problems that define autism are not reversible, we do not take "being normal" as the goal of our educational and therapeutic efforts. Rather, the long-term goal of the TEACCH programme is for the student with autism to fit as well as possible into our society as an adult. We achieve this goal by respecting the differences that the autism creates within each student, and working within his or her culture to teach the skills needed to function within our society, (p. 1)
Disability Theory
In addition to the Culture of Autism, the Disability Theory also provided a theoretical lens in which to explore this study. Throughout the course of time, many groups of individuals have struggled against oppression and fought to have equal opportunities and rights. These groups of "positive identity formations," such as the black power movements, gay pride, and feminism, seek to free themselves from society's prejudices. They seek to improve their quality of life by declaring that they are also valuable members of society. By identifying positively instead of negatively with the disability, individuals with disabilities are also able to lead more productive and happier lives (Siebers, 2008).
The Disability Theory suggests that people with disabilities are often discriminated against in today's society through oppression, exclusion, and the generally accepted belief that having an able body and mind can determine if an individual is a
"quality human being" (Siebers, 2008). Since becoming a political force in the 1970s, 6 disability activists have confronted the social, economic, and environmental barriers that exclude individuals with disabilities and deny them their rights as citizens (Barnes &
Mercer, 2001). This discrimination stems from society's need for a "perfect" body. In
1966, Hunt published an essay in which he discussed that society feared individuals with disabilities because they were unable to accept themselves (as cited in Barnes & Mercer,
2001). Modern science focuses on curing diseases and eliminating illnesses so much that any variation of perfection is seen as a weakness or deficit (Siebers, 2008). Seligman and
Darling (2007) determined that the medical field equated disability with illness: "In short, disability is viewed as a negative condition requiring treatment, rehabilitation, or cure"
(p. 5). Siebers suggested that society's ideology of ability, which is summed up as the preference for able-bodiedness, causes the fear of disability.
Disability studies focus on the oppression that is unique to individuals with disabilities and on the positive values that those individuals possess that can contribute to society (Siebers, 2008). Advocates of the Disability Theory argue that the disabled population has basic human rights as well and should be respected for their differences
(Mulvany, 2000). In fact, there is a group of people known as disability rights activists who view disability as a form of oppression. Those activists believe that the "disability- as-deficit notion" is one created by the medical and clinical society. Members of the medical and clinical society are said to believe that expert opinion and knowledge is needed in order to cure or correct the differences that the person possesses (Gabel, 2009).
"The medical model defines disability as an individual defect lodged in the person, a defect that must be cured or eliminated if the person is to achieve full capacity as a human being" (Siebers, 2008, p. 3). In a society that is so focused on being healthy and 7
"normal," individuals who deviate from those standards are viewed as having an individual defect (Siebers, 2008, p. 3).
According to Bernier and Gerdts (2010), members of the Autism Rights
Movement encourage "the acceptance of individuals with ASD in the community as they are, without studying them or trying to fix them" (p. 110). Instead of viewing autism as a disorder, autism rights activists see it as a variation in functioning. "Their hope is to be accepted as a minority group in need of representation, rather than a disabling condition in need of repair" (Bernier & Gerdts, 2010, p. 110).
In addition to the medical model, there is also a social model for Disability
Theory. Siebers (2008), author of Disability Theory, stated that disability is not a product of the medical society as much as a result of social injustice. Disability is not a physical or mental deficit but is instead a cultural identity that is socially constructed (Siebers,
2008). Siebers explained that disability studies do not focus on curing the individual with disabilities, but instead, focus on altering the environment in order to eliminate negative emotions and connotations related to disabilities. Disability theorists "study the social meanings, symbols, and stigmas attached to disability identity and asks how they relate to enforced systems of exclusion and oppression, attacking the widespread belief that having an able body and mind determines whether one is a quality human being"
(Siebers, 2008, p.4). These individuals' focus is to see disability as an identity rather than a physical or mental characteristic, which will allow the negative connotations surrounding it to be replaced (Siebers, 2008).
Siebers (2008) also explained that many individuals with disabilities do not consider themselves flawed in any way; in fact, many of them do not wish to be cured. 8
Perhaps Siebers was especially effective in describing the thoughts of individuals with disabilities because Siebers himself had a physical disability. Siebers summarized the feelings of these individuals when stating that, "Tired of discrimination and claiming disability as a positive identity, people with disabilities insist on the pertinence of disability to the human condition, on the value of disability as a form of diversity, and on the power of disability as a critical concept for thinking about human identity in general"
(p. 3). Siebers indicated that instead of continuing to allow the disabled to be viewed as having a deficit, these individuals should embrace their differences and find positive aspects of their condition.
Components of the Disability Theory are similar to the TEACCH ideas to suggest that there may be positive aspects regarding autism. Similar to the Disability Theory,
TEACCH recommends that environmental changes may aid the person with autism in functioning mofe successfully (Mesibov et al., 2004). Therefore, in addition to the
TEACCH conceptual model, the Disability Theory also provided a framework for evaluating the data collected through this study.
Statement of the Problem
One of TEACCH's three educational principles is family collaboration.
According to TEACCH, involving the parents in the treatment process has helped children with autism lead more productive and independent lives (Mesibov et al., 2004).
Hausler (1998) found that treatment is only useful if the consumer, in this case, the parent, accepts it. The treatment outcome can also be affected by the parents' belief regarding the etiology of autism; the parents' history, beliefs, values, and coping 9 behaviors form their ideological basis. The parents' ideological style can affect their approach to services (Seligman & Darling, 2007). According to Seligman and Darling,
Because individuals are shaped by the social structures in which they live, people from different societies or different groups within a society may view similar situations differently. Thus the perspective of parents of children with disabilities may not be shared by the professionals who provide services to them. (p. 11)
If the parents' beliefs regarding the causes of autism differ greatly from those of the interventionists, then their professional relationship could be negatively affected because they may have different expectations regarding the child's ability and progress (Hausler,
1998). Therefore, in order to determine the similarities and differences in beliefs and expectations, this researcher believed it was necessary to uncover those beliefs and expectations.
According to Seligman and Darling (2007), "many parents of children with disabilities continue to focus on treatments or interventions that will improve their children's ability to function in society" (p. 6), but individual beliefs vary based on personal experiences. The parents and the professionals working with the same child may have different beliefs and perspectives. The family's beliefs, values, and coping behaviors form their ideological style, which can affect their interpretation of events and approach to services. Therefore, the professionals working with them need to understand the parents' attitudes and expectations. Seligman and Darling explained that understanding those expectations could affect the relationship that the professionals have with the parents of autistic children.
In order for TEACCH interventionists to work better with parents of autistic children, it is necessary for them to become aware of parent attitudes towards the
TEACCH program and their conceptual model: the Culture of Autism. As a part of the 10
TEACCH evaluation services, satisfaction evaluations are conducted with all parents who receive diagnostic or treatment services from TEACCH. In response to the evaluations and the treatment sessions, the parents all responded that they were satisfied. However, those evaluations were focused on the parents' satisfaction with the TEACCH practices not the philosophical foundation that those practices are based upon. Additional research was necessary to determine parent attitudes towards the TEACCH conceptual model— the Culture of Autism.
Studies exist examining the effectiveness of the TEACCH program (Eikeseth,
2009; Panerai, Ferrante, & Caputo, 1997). In Eikeseth's study, it was suggested that
TEACCH was not as effective as another well-known intervention program used with children with autism. Additionally, several studies had been conducted to examine the mental state of parents of children with autism (Schopler & Lofitin, 1969), or to examine parents' involvement in their child's autism (Kanner, 1968). Other studies had investigated the stress and coping skills of parents of children with autism (Fong,
Wilgosh, & Sobsey, 1993; Midence & O'Neill, 1999) or adaptation and spousal support among parents of disabled children (Bristol, Gallagher, & Schopler, 1988). Midence and
O'Neill (1999) found that parents experienced stress and confusion in understanding their child's condition before their child's diagnosis; however, parents appeared to experience a sense of relief after receiving the diagnosis. Parents reported that they accepted their child's condition, were able to set reasonable expectations, and were able to improve their family's sense of well-being (Midence & O'Neill, 1999).
In 2006, a group of researchers in New York examined parent beliefs regarding the cause of their child's autism. Researchers found that 26% of the parents identified 11 that they believed that there was a specific cause for the autism and that their belief affected their attitudes (Harrington, Patrick, Edwards, & Brand, 2006). A 2003 study by
Jennett, Harris, and Mesibov (2003) evaluated teacher attitudes toward TEACCH versus
Applied Behavioral Analysis. They determined that those teachers who were trained to implement TEACCH in their classrooms agreed with its philosophy.
Purpose of the Study
The purpose of this narrative case study was to identify the attitudes of parents of young children with autism towards the TEACCH program's conceptual model, also known as the Culture of Autism. The purpose of this study was to inform individuals working with the TEACCH program and TEACCH interventionists that work with families of individuals with autism to allow them to determine the similarities and differences in their beliefs and expectations. Those similarities and differences could have an effect on the treatment outcome (Hausler, 1998) and the professional-parent relationship (Seligman & Darling, 2007). Because a professional's purpose is to assist the families in achieving their goals, it is necessary that the professional be aware of and understands the parents' goals. A study conducted by Harrington et al. (2006) determined that physicians should "sustain an open, trusting relationship with parents of children with autism by inquiring about the parents beliefs" (p. 460). Therefore, it could be assumed that the same should be true for interventionists as well.
The TEACCH program puts great emphasis on the use of parents as co-therapists.
When working with the parents, TEACCH identified several values that the TEACCH interventionists needed to have. One of those values was "respects the individuality of each family, knowing that their priorities should guide all work with them, and that as 12 much as possible work should be at a tempo that is comfortable for them" (Mesibov et al., 2004, p.l 19). According to Mesibov and colleagues, TEACCH seeks to work with families based on their individual needs, strengths, resources, challenges, and preferences. It is hoped that the results of this study will allow TEACCH interventionists to better understand those qualities.
Research Question
Primary Research Question
What are the attitudes of parents of young children with autism towards the
TEACCH conceptual model, the Culture of Autism?
Secondary Research Questions
1. How do parents of young children with autism interpret the meaning of the
Culture of Autism?
2. To what extent do parents of young children with autism agree or disagree
with the TEACCH conceptual model, known as the Culture of Autism?
3. What experiences have the parents had with the TEACCH program that has
affected their attitudes regarding the TEACCH conceptual model, known as
the Culture of Autism?
Rationale
The researcher has observed many parents of children with autism struggle in their search for a cure for their young child's disorder. Their yearning for their child to become "normal" appeared to be very different from the philosophy of the TEACCH program. Over the years, the researcher became increasingly interested about the attitudes of parents of young children with autism towards the TEACCH conceptual model 13 because of her personal beliefs towards the philosophy and her experiences with those parents.
While research exists involving the effectiveness of TEACCH and stress factors of parents of children with disabilities, there is a need for research focused on parent attitudes regarding the TEACCH conceptual model, the Culture of Autism. The researcher hopes the data collected during this study will serve as a positive contribution to the field of autism that will enable TEACCH interventionists to better meet the needs of the families that they work with.
Significance
While TEACCH interventionists have conducted informal surveys with parents that they work with, there was a need for further research regarding parent attitudes towards the TEACCH conceptual model. By identifying the attitudes of the parents,
TEACCH interventionists and other professionals perhaps will be better able to meet the parents' needs. This was based on the idea that parents should have an active role in their child's treatment (Mesibov et al., 2004). According to TEACCH proponents, parents should serve as "co-therapists" (Mesibov et al., 2004). In order for the TEACCH interventionists and the parents to have a good professional relationship and be able to communicate effectively, it is important for the interventionists to understand the parents' attitudes towards the conceptual model that the interventions are based on. Additionally,
Hausler (1998) determined that parents' beliefs regarding autism could affect the treatment outcome if those beliefs differ greatly from those of the TEACCH interventionists. Therefore, it was necessary to identify the beliefs and expectations of the parents. The results of this study are expected to provide that information as well as 14 encourage professionals and other educators to consider parent attitudes when working with the families with autistic children.
Methodology
The research methods of this study were based on a phenomenological study conducted by Kalash (2009), which focused on the perspectives of parents of children with autism towards their children's diagnosis and treatment options. Kalash's study used phenomenological methods, unlike this narrative case study, but both studies focused on uncovering parent perspectives using interviews or questionnaires. Similar to Kalash's study, this study selected a small number of parents of young children diagnosed with an autism spectrum disorder. In Kalash's study, 12 parents of children with autism were interviewed and in the current study, three parents of young children with autism were given an electronic questionnaire. For the purpose of this study, young children were defined as children between the ages of 3 and 7 who participated in a public education program. The data were analyzed using Auerbach and Silverstein's (2003) six steps for coding: stating the concerns and the theoretical framework, selecting relevant text, recording repeating ideas by grouping related passages, organizing themes by grouping into categories, developing theoretical constructs by grouping themes into more abstract concepts, and creating a theoretical narrative. The six steps were organized into three phases: make the text manageable, hear what was said, and develop the theory. In the first phase, the research problem and theoretical framework were reintroduced and then the responses were read to determine relevant text, also known as "significant statement" sentences (Kalash, 2009, p. xii), as determined by the researcher. The "significant statements" were then organized into repeated ideas and themes. The themes were 15 grouped to develop theoretical constructs and summarized to create a formulated meaning based on the individual parents' experiences, known as the theoretical narrative.
The parents' own words were used in order to produce an autobiographical account of their experiences. This method was the preferred method used in disability studies, black studies, and women's studies (Siebers, 2008). If the participants had difficulty completing the electronic questionnaire or if there were issues clarifying their responses, then the option of a phone interview was given.
Of the three types of coding, including open, axial, and selective coding, this study is classified as open coding. Mills, Durepos, and Wiebe (2010) described open coding as a process of questioning, reflecting, and then categorizing the participant's words. Through categorizing the participant's responses, the researcher was able to organize these responses into categories that were meaningful (Mills et al., 2010).
The researcher identified three parents of young children with autism who had had experience with the TEACCH program. Initially, the researcher sought to only identify parents of preschool children with autism. However, the researcher was able only to identify one parent of a preschool child with autism. Therefore, it was decided to expand the research study to parents of older children as well. The young children had to have received a medical or educational diagnosis of Autism Spectrum Disorder by a licensed psychologist or psychiatrist and between the ages of 3 to 7. Information regarding the study was placed in the research section of the Autism Speaks website, in which parents were invited to participate in various studies. Parents who consented to participate were asked to email the researcher. Those parents were then sent a letter of consent. After agreeing to participate, they were emailed a series of questions regarding 16 their attitudes towards the TEACCH program, specifically regarding its conceptual model. They were allowed 2 weeks to complete the electronic questionnaire and were asked to complete it thoroughly and honestly. The questionnaire was structured and consisted of both closed and open-ended questions. All data were stored in a secure location and the identity of the participants was only known to the researcher. After concluding the interviews, the researcher examined and analyzed the transcripts.
Limitations, Assumptions, and Design Controls
There were several limitations in this study for which the researcher had no control over. First, there was not a great deal of research examining the attitudes of parents of children with autism towards the conceptual models of various intervention techniques. Additionally, some participants may have chosen not to answer the questionnaire honestly, causing the results to be skewed. There are two types of threats that may have affected the validity of the interview. The first was researcher bias, which arose due to the researcher's personal beliefs and expectations of the outcomes and results of the interview.
Secondly, reactivity may have occurred through the researcher's influence on the participant. When conducting interviews with the parents, it was assumed that they were answering the questions thoroughly and honestly. In order to prevent the participants from answering in a manner in which they feel that the researcher expected them to, the interview took place through electronic mail and the questions were phrased as not to lead the participants to answer in a certain way.
In addition to threats to the validity of the interview, there may have also been issues with its generalizability. While the results were internally generalizable to other 17 parents with similar characteristics, it may not be generalizable to parents with various other characteristics, such as socioeconomic status, educational background, age, culture, or race. Therefore, it may lack external generalizability.
Finally, there may have been limitations that arose due to the participants' inability to complete the electronic questionnaire or difficulty in expressing their feelings.
This could be due to their educational background or their computer knowledge. In the off chance that this did occur, an optional phone interview was planned in addition to the electronic questionnaire.
A final limitation of this study may have occurred if the participants had difficulty articulating their ideas on the electronic questionnaire. Difficulty could be due to their level of education or computer knowledge. In order to account for this, an optional follow-up phone interview was offered to clarify any information.
Definition of Key Terms
Within the world of special education, there are many terms used by a variety of groups that may lead to different meanings or interpretations. Therefore, it is necessary to define certain important terminology for the purposes of this study.
Autism Spectrum Disorders. The term autism spectrum disorders (ASD) is often used interchangeably with the term autism. Autism is a developmental disorder, affecting people of all ages. According to the Center for Disease Control, autism spectrum disorders are a group of developmental disabilities that can cause significant social, communication and behavioral challenges. The American Psychiatric Association (2010) defines autistic disorder as a qualitative impairment in social interaction, communication, and restricted repetitive and stereotyped behavior, interests, or activities. They also 18 suggest an autism diagnosis if the delays in social interaction, communication, or imaginative play occur prior to age 3 and if the disturbance is not accounted for by Rett's
Disorder or Childhood Disintegrative Disorder (APA, 2010.). In the Individuals with
Disabilities Education Act (IDEIA, 2004), autism is stated to be typically evident in individuals before age 3 and that it has an effect on their educational progress.
Culture of Autism. Mesibov et al. (2004) explained that the Culture of Autism refers to the theoretical model that was developed by the TEACCH program. It is used to describe people with autism who have similar characteristics. TEACCH's intervention strategies, known as Structured Teaching, are based on this model. The values that form the TEACCH conceptual model, known as the Culture of Autism, include: understanding and appreciating people with autism spectrum disorders, having a commitment to excellence and strong work ethic, not standing on ceremony or becoming overly impressed by their status, having a spirit of cooperation and collaboration, and looking for the best in others, as well as their selves.
Disability. Disability can be defined in various ways based on the philosophy of the person defining it. "The medical model defines disability as an individual defect lodged in the person, a defect that must be cured or eliminated if the person is to achieve full capacity as a human being" (Siebers, 2008, p. 3). On the other hand, Siebers explained that the field of disability studies sees disability as a form of social injustice that requires societal changes instead of a cure:
Disability studies does not treat disease or disability, hoping to cure or avoid them; it studies the social meanings, symbols, and stigmas attached to disability identity and asks how they relate to enforced systems of exclusion and oppression, attacking the widespread belief that having an able body and mind determines whether one is a quality human being. (Siebers, 2008, p. 3) 19
According to the Individuals with Disabilities Education Act (IDEIA, 2004), a disability includes mental retardation, hearing impairment, visual impairment, emotional disturbance, orthopedic impairment, autism, traumatic brain injury, other health impairment, learning disability, deaf-blindness, or multiple disabilities.
Parent. For the purpose of this study, the term parent will be used to refer to a natural, adoptive, foster parent, guardian, or an individual acting in the place of a natural or adoptive parent (IDEIA, 2004).
TEACCH. TEACCH is an acronym used for the Treatment and Education of
Autistic and related Communication Handicapped Children (Mesibov et al., 2004). The
TEACCH curriculum was developed by Division TEACCH at the University of North
Carolina. Division TEACCH is a statewide program for people with autism or other similar developmental disorders and their families. The program provides diagnostic, evaluation, early intervention, treatment, and assists in residential and work placements.
TEACCH was founded in 1966 by Eric Schopler and Robert Reichler, along with the help of many parents of children with autism. TEACCH is based on their conceptual model, known as the Culture of Autism (Watson, 1985).
TEACCH interventionist. For the purpose of this study, the term TEACCH interventionist is used to describe a parent, educator, psychologist, or other professional trained to implement the TEACCH program.
Young student. For the purpose of this study, the term young student is used to refer to a child between the ages of 3-7 that is enrolled in and receives services through a special education program.
Summary The TEACCH program is an intervention program commonly used with children with autism. It was developed in 1966 by Eric Schopler and Robert Reichler at the
University of North Carolina-Chapel Hill. Today, TEACCH consists of intervention programs, adult work programs, and training services for educators, professionals, and parents of individuals with autism (Mesibov et al., 2004).
TEACCH is based on the philosophy of the Culture of Autism and puts great focus on the involvement of parents in the treatment process. In order for TEACCH interventionists to best meet the needs of those parents, and thus make the greatest progress with the child, it is necessary for them to understand the parents' feelings and attitudes towards TEACCH and the TEACCH philosophy.
A review of related literature follows in chapter 2, including literature on the
TEACCH program, its conceptual model, and parent attitudes. In chapter 3, the research design and methodology is discussed. Chapter 3 includes the problem, research questions, hypothesis, population, data collection, and data analysis. Chapter 4 includes the research findings, and the researcher discusses their relation to the literature. Chapter 5 includes the summarization, conclusion, and recommendations for future research. 21
CHAPTER 2
REVIEW OF RELATED LITERATURE
The Treatment and Education of Autistic and related Communication handicapped Children (TEACCH) program is an intervention program commonly used for children with autism. It includes intervention programs, adult work programs, and training services for educators, professionals, and parents of children with special needs.
Components of TEACCH focus on involving the parents of the children in the treatment process. The program is arranged so that the parents work alongside the TEACCH interventionist in order to reach mutually set goals. In order for TEACCH interventionists to best meet the needs of the parents, and thus make the greatest progress with the child, it is necessary for them to understand the parents' feelings and attitudes towards
TEACCH and the TEACCH philosophy.
In this chapter, the researcher has completed a review of literature related to parent involvement in the treatment of children with special needs. The chapter includes literature on parent involvement with the TEACCH program, as well as other treatment programs, and the benefits of that involvement. Additionally, the researcher examined literature regarding parent attitudes and personal philosophies. 22
Autism Spectrum Disorders
The first documented cases in the United States of an individual having autism dates back to the 1960s; however, Feinstein (2010) explained that there were actually descriptions of individuals exhibiting characteristics of autism as far back as 1724.
During this time, reports of a young boy, known as Wild Peter, surfaced. Wild Peter was observed running naked through German fields and identified as having a lack of speech, as well as other characteristics. Years later in France, a young boy, referred to as the Wild
Boy of Aveyron, was found naked and later diagnosed as "an incurable idiot." Additional reports of individuals showing characteristics also surfaced in Italy and Austria in the early 1900s (Feinstein, 2010). Around that time, Dr. Eugene Bleuler first began using the term "autism," which originated from the Greek word "autos," meaning self. However,
Bleuler used the term in a different way than it is used today (Feinstein, 2010).
Case studies describing children who had characteristics of autism were also published early in the 20th century. A 1920 case study published by Dr. Lighten Witmer, considered the founder of clinical psychology, described a psychotic child who seemed to have many characteristics of autism. Several years later, Dr. Howard Potter described several children who were diagnosed as having childhood schizophrenia but who seemed to have characteristics of autism (Feinstein, 2010).
Bleuler began using the term "autism" in 1911, but Kanner and Asperger in the
1930s used the term, in a manner more akin to its use today. Kanner and Asperger would later be referred to as the "pioneers" in the study of autism. During the time that Kanner and Asperger began separately working with children displaying characteristics of autism, it was common practice among most psychiatrists to exclude children with 23 mental retardation from their practices. Kanner, an advocate for children with autism, published a paper in 1943 entitled "Autistic Disturbances of Affective Contact," in which he described five features of autism. Those features included a lack of affective contact with others, an obsession with sameness, a fascination with objects, a delay in language, and an ability to memorize. This landmark paper examined 11 children who Kanner identified as having normal or above-normal intelligence, as well as exhibiting the five characteristics of autism (Feinstein, 2010). One year later, Asperger described four case studies of boys between the ages of 6 and 11, who he found to have above-average abilities, a condition that would later be referred to as Asperger's Syndrome (Feinstein,
2010).
When the first cases of autism were documented, autism was categorized as a form of mental illness. Researchers and scientists often referred to people with autism spectrum disorders as psychotic, atypical, or schizophrenic (Mesibov et al., 2004). In
1952, the American Psychiatric Association's Diagnostic and Statistical Manual of
Mental Disorders (DSM-1) defined autism as the manifestation of childhood schizophrenia (Feinstein, 2010). Also during this time, there was a belief that the parents of children with autism somehow contributed to their child's condition. In Kanner's landmark 1943 paper, "Autistic Disturbances of Affective Contact," he described parents of the children examined as being cold and detached from their children. He used the term "refrigerator mother" to refer to the parents' behavior (Feinstein, 2010, p. 33).
Although Kanner denied blaming the parents for their child's condition, this assumption and belief would continue to gain popularity for many years (Feinstein, 2010). 24
Bruno Bettelheim, a psychology professor at the University of Chicago, was a large supporter of Kanner's ideas and was an influential force in the early days of autism studies. Bettelheim believed that children with autism should be removed from their parents in order to cure them of their mental illness (Mesibov et al., 2004). Not only were parents being blamed for causing their child's condition and not allowed involvement in the treatment process, but they were being allowed no contact at all with their children.
Bettelheim published a book in 1967, The Empty Fortress, in which he examined the progression of three children with autism after receiving psychoanalytic and milieu therapy. He claimed that the parents' behaviors caused their children to become autistic and that the children's behaviors were a defensive withdrawal due to the parents' behavior (Feinstein, 2010). According to Feinstein, Bettelheim believed that "parents of children with autism had a psychological pathology which led them to react abnormally to their infant's normal behaviors" (p. 59). As the children reacted to their parents' behavior, a cycle occurred. That cycle continued until the children were considered to have autistic disease, which could be cured by separating the child from the parent
(Feinstein, 2010).
Eisenberg, a colleague of Kanner's, also discussed the possibility of parents' behavior contributing to their child's condition. Both Eisenberg and Kanner suggested that the parents of the children they worked with had a lack of emotional interaction with their children. However, Eisenberg also suggested that there were certain characteristics that the children exhibited from birth. Therefore, he determined that the parents' behaviors might occur in response to the children's behaviors (Feinstein, 2010). 25
The negative attitude towards the parents of children with autism was also focused on the children themselves. The American Psychiatric Association published two articles during the 1940s in which it was suggested that children with mental retardation over the age of 5 needed to be euthanized. The purpose of euthanization was to relieve them of the "agony of living" and to save their parents from "anguish and expense"
(Feinstein, 2010, p. 34). Kanner spoke out against this line of thinking, but he was a proponent of sterilization (Feinstein, 2010).
In opposition of the view supported by most researchers of the time, including
Bettelheim, many parents formed support groups, such as the National Society for
Autistic Children, which later became the Autism Society of America. The National
Autistic Society was formed in England, termed at the time as Society for Psychotic
Children. At the group's first conference, Eric Schopler, co-founder of TEACCH, was asked to speak on the topic of the autistic child in society (Feinstein, 2010). Schopler had conducted early research in which the purpose was to determine that autism was not caused by parent behaviors. Instead of the commonly held view that parents were to
blame for the child's condition, Schopler believed that autism was somehow related to
how the person experienced the world and interpreted those experiences (Mesibov et al.,
2004). Schopler, along with Robert Reichler, and with the assistance of parents of
children with autism, went on to develop the Treatment and Education of Autistic and
related Communication handicapped Children (TEACCH) program (Mesibov et al.,
2004). Today, the TEACCH program is used to assist people of all ages with autism to
live successful lives through a variety of methods, including the close collaboration
between the interventionist and the parent. 26
Increased research also allowed for a better understanding of autism spectrum disorders. In his 1971 paper, Kolvin provided evidence that autism and schizophrenia were actually two separate conditions. However, it was not until 1980 that the third edition of the DSM moved autism from being described as the manifestation of childhood schizophrenia to the category "pervasive developmental disorders" (Feinstein, 2010, p. 40).
Increased research led to greater awareness regarding autism spectrum disorders
(ASD), which may be one explanation for a rise in the prevalence of ASD. According to
Boyd, Odom, Humphreys, and Sam (2010), "the prevalence of ASD has increased tremendously over the last two decades" (p. 76). In addition to increased awareness, other possible reasons for the increase may include the facts that the diagnoses were being given at a younger age, that ASD is a spectrum disorder, the occurrence of misdiagnoses, and the creation of an autism category amongst certain agencies (Boyd et al., 2010).
Treatment and Intervention
It was not until the 1950s that there was a shift in focus to providing treatment and interventions for children with autism. Both biomedical treatments and educational interventions were considered. The Linwood Center, the first school for individuals with autism, was founded in the State of Maryland in 1955. The founder of the school, Jeanne
Simons, believed that children with autism should not be institutionalized. She, along with her colleagues, developed what was referred to as the Linwood Method and provided service for children ages 3-5. Simons and her colleagues believed that all children had worth and potential and allowed that philosophy to drive their practice. The school was influential towards many psychiatrists and other professionals who were 27 interested in their work. In fact, Kanner visited the school in the late 1960s to conduct a study involving many of the children. By 1973, Kanner had determined that only 10 of the 34 children that he had focused on at Linwood had somewhat recovered from their condition (Feinstein, 2010).
Carl Fenichel, a medical doctor, founded another educational intervention program in New York in 1953. This program, known as the League Treatment Center, allowed the parents to be involved in the treatment process. Although this practice was very uncommon at that time (Feinstein, 2010), it is the basis of many programs today, including the TEACCH program.
Prior to the 1970s, most school-aged children with special needs were isolated in special schools or kept at home. In 1972, the amendments to the Economic Opportunity
Act mandated services being provided to students with disabilities. Federal funding specifically for preschool students with special needs also became available at this time
(Opportunities for Ostego, 1976).
In the early 1970s, preschool education focused on "free play." However, there is an increasing awareness of the need for monitoring students' education even at that young age. Observations, data collection, assessment, and training of teachers are now a common part of special needs preschool (Clark, 1987).
According to the Committee on Educational Interventions for Children with
Autism (CEICA, 2001), education is the primary form of treatment for individuals with autism. Education is "the fostering or acquisition of skills or knowledge—including not only academic learning, but also socialization, adaptive skills, language and communication, and reduction of behavior problems" (CEICA, 2001, p. 12). In addition 28 to TEACCH, some of the other modern interventions used with children with autism in the education setting include Applied Behavior Analysis (ABA), Picture Exchange
Communication System, and facilitated communication (Simpson et al., 2005). However,
TEACCH and Applied Behavior Analysis (ABA) are the two most common interventions associated with autism education (Feinstein, 2010).
Although there is not a single proven method to teach children with autism, there are practices which have been scientifically validated and considered to be effective in treating children with autism spectrum disorders in combination with matching the needs of the children, their setting, and the family. (Kalash, 2009, pp. 20-21)
Applied Behavior Analysis
Ivar Lovaas developed a form of Applied Behavior Analysis (ABA), commonly referred to as Lovaas therapy. The Lovaas technique is based on a traditional operant paradigm in which the child's behavior is modified through the adult's control
(Chambliss & Doughty, 1994). According to Feinstein (2010), Lovaas and Schopler, co-founders of TEACCH, are the two most common names in autism education.
However, the two men differed greatly in their philosophies and practices. Lovaas graduated from the University of Washington before becoming a professor at UCLA's
Neuropsychiatric Institute, Franz Hall. Lovaas worked with children with autism and agreed with the "refrigerator mother" theory. Lovaas began to use behavior therapy with the children, along with corporal punishment and electric shock therapy. In 1970, he founded the Young Autism Project, providing early intervention to children with autism ages 2 through 4. Eventually, Lovaas determined that autism was, in fact, organic in nature and not psychodynamic (Feinstein, 2010). 29
Different theories of autism result in varied approaches to psychological and educational intervention. Interventions for autism typically are located in operant learning theory. One such intervention is Applied Behavioral Analysis (ABA). ABA is often used synonymously with Lovaas therapy and Intensive Behavioral Intervention (IBI); however, there are differences in meaning among the three therapies. IBI is early intervention that addresses significant behaviors and includes ABA. ABA is the process of systematically applying interventions based on learning theory. Similarly, Lovaas's therapy focuses on the treatment of children with autism in the development of language, increasing of social behaviors, and promotion of cooperative play (Tews, 2007).
The intervention that Lovaas developed, known as Lovaas therapy and sometimes referred to as ABA, is one of the three branches of behavior analysis. According to
Fisher, Piazza, and Roane (2011), ABA focuses "on solving problems of social importance using the principles and procedures of behavior analysis" (p. 3). Cooper
(1982) referred to ABA as the manipulation of stimuli to result in a favored response and described it as a foundation for the "systematic application of environment applications"
(Cooper, 1982, p.l 15). Pullen (2008) noted that ABA is at the top of the list of autism therapies and may be considered the "gold standard" by many scholars. Behaviorists, such as Lovaas, believe that behavior can be studied using scientific methods, and that all behavior can be controlled by manipulating the environment (Fisher et al., 2011).
In 1987, Lovaas published results of a 17-year longitudinal study in which he found that 47% of the children with autism were able to function normally in mainstream schools after participating in ABA therapy. This claim was met with mixed responses. 30
Critics claimed that there were serious methodological errors in Lovaas's work. Schopler was highly critical of both Lovaas's work and the published study (Feinstein, 2010).
In an interview with Feinstein (2010), Mesibov stated that there are two main differences between ABA and TEACCH. The first was philosophical. Proponents of
ABA believed that they could restore a child with autism to "normalcy" whereas
TEACCH focused on children's strengths in order to allow them to function more comfortably. Mesibov stated that, "ABA—Lovaas is teaching the more "normal" model of development and functioning, while we at TEACCH are trying to expand around the differences" (Feinstein, 2010, p. 136). Additionally, Mesibov suggested that while ABA focused on positive reinforcement in order to cause a behavior to be repeated, TEACCH focused on meaningfulness and understanding. Therefore, ABA and TEACCH differ in both philosophy and practice.
There is a great deal of research supporting the use of behaviorist intervention techniques, such as ABA, Lovaas therapy, and IBI, although some of it has been criticized for methodological errors. The 1987 study conducted by Lovaas examined two groups of young children with autism that participated in long-term behavioral treatment.
The groups included an intensive-treatment experimental group that received more than
40 hours of one-on-one treatment each week and a control group that received 10 hours or less of one-on-one treatment each week. Both groups received treatment for 2 or more years. Intelligence exams, behavioral observations, and parent interviews were conducted. Lovaas (1987) reported that 47% of the children had achieved normal intellectual and educational functioning. Many researchers in recent years have tried to replicate this study; however, most have failed to produce the same results. As stated 31 previously, there have been many criticisms regarding this study, including the suggestion of methodological errors.
In a 1989 article, Lovaas, Smith, and McEachin responded to critiques by
Schopler, Short, and Mesibov (1989) of Lovass's 1987 study. In response to the critique that no other studies have seen results similar to the 1987 study, Lovaas et al. explained that the three factors that enabled them to have the positive outcome in the 1987 study, included the use of intensive interventions, the use of many empirically derived teaching techniques, and improvements on previous treatment programs. Lovaas et al. concluded that the initial study was sound and could withstand scrutiny, adding that it continued to suggest that preschool children with autism could achieve normal functioning.
In a 1994 study, Chambliss and Doughty examined parental factors that affected the behavioral treatment of children with autism. Participants included parents of children with autism, ages 4-7, who participated in a Lovaas approach to intervention.
Questionnaires were sent to five families, including three mothers and two fathers. The data revealed that mothers were more likely to experience greater stress and responsibility in caring for their child with autism than fathers, who were generally more optimistic and spent less time with their child with autism. Both mothers and fathers expressed positive attitudes towards the use of the Lovaas method; however, the fathers tended to have more optimistic perceptions than the mothers. The researcher indicated that this might be due to the fact that the mothers were spending more time with the children in implementing the program. The parents were also questioned about other treatment techniques used with their child. Many indicated that they had previously tried other interventions with their child and that they found those programs to be just as successful as the Lovaas technique.
A 2005 article by Shea sought to dispel some misconceptions regarding Early
Intensive Behavioral Intervention (EIBI), including the Lovaas method and applied behavioral analysis. Specifically, Shea was determined to disprove the perception that
47% of children who received EIBI could be expected to obtain "normal" functioning, which was suggested in Lovaas' 1987 report and the McEachin, Smith, and Lovaas
(1993) follow-up. Shea noted that many studies subsequent to the Lovaas and McEachin et al. studies have consistently failed to replicate those numbers. As Shea (2005) stated, it is understandable that parents may hope for their child with autism to "recover;" however, Shea encouraged the professional community to explain that while EIBI is beneficial, there is no evidence that suggests that children would be able to function
"normally" (p. 109).
A 2005 study by Leblanc, Richardson, and Mcintosh examined the Intensive
Early Intervention Program for Children with Autism (IEIP) program, whose basic tenets are based on Applied Behavioral Analysis (ABA). Leblanc and colleagues examined the effectiveness of the program when treating young children with autism. Over a course of
2 years, the researchers gathered data from three cases. Each participant was male and they ranged in ages from 2 years 11 months to 4 years 10 months. Each child was given a pretest and posttest following treatment to determine their IQ and progression in adaptive functioning and language ability. The researchers found that the program was effective in the case of two of the participants but not the third. The third participant made no 33 significant progress in the areas that were formally assessed. It was stated that the results were inconclusive in determining the effectiveness of ABA.
Reed, Osborne, and Corness (2006) examined the effectiveness of home-based behavioral interventions on children with autism between the ages of 2 and 4. For over
9 months, the children with autism participated in one-on-one teaching by a tutor and under the guidance of an ABA supervisor. Participants were separated into a high- intensity and low-intensity groups. Typical sessions lasted between 2-3 hours, and the programs used an antecedent, behavior, and consequence procedure. All participants were assessed before the treatment began and again after 9 months using the
Psychoeducational Profile-Revised and British Abilities Scale Parents of the children also completed the Vineland Adaptive Behavior Scales and the Gilliam Autism Rating Scale.
Reed et al. found that there was no evidence of recovery from autism; however, they did determine that high-intensity behavioral approaches were more effective than low- intensity programs. The high-intensity group showed statistically significant gains for intellectual functioning and educational functioning while the low-intensity group only showed statistical significance in the educational functioning gains.
Zachor, Ben-Itzchak, Rabinovich, and Lahat (2007) compared the effectiveness of
Applied Behavioral Analysis and another treatment technique on young children with autism. Twenty-two children of the sample population were exposed to ABA while the other 19 children were exposed to a different treatment. The groups were matched for age, autism severity, and cognitive level. Zachor et al. performed a pre-intervention evaluation before the child's enrollment in the intervention program and a reassessment one year later. They determined that the ABA group made significant gains as opposed to 34 the other group. While both intervention groups showed some improvement after one year of intervention, the ABA group's advancement was much more pronounced. The researchers concluded that the ABA program was more effective for the sample population than the other intervention program (Zachor et al., 2007).
Tutt, Powell, and Thornton (2006) examined several intervention methods used with children with autism and their psychological beliefs, including the Lovaas method and TEACCH. According to Tutt et al., Lovaas was not concerned with why children with autism behave as they do. The Lovaas method was critiqued for not focusing on building relationships or reflecting on their actions. Tutt et al. described TEACCH as being similar to Lovaas in that it is based on many behaviorist methods, but also allows for incidental learning and structured teaching. Additionally, it was noted that TEACCH focuses on developing communication skills, personal autonomy, and the use of visual supports. TEACCH accounts for the visual strength of individuals with autism by accompanying verbalizations with visualizations.
Early Intervention
Because the onset of autism spectrum disorders occurs early in life, many intervention programs focus on early intervention. According to Seligman and Darling
(2007), improved assessment, diagnosis, and increased awareness of the symptoms have contributed to earlier identification of children with special needs. Earlier identification of children with autism should lead to more children receiving early intervention services
(Cohen, 2011). It has been suggested that 90% of brain growth is completed in the first few years of life. Some have used this argument to encourage the use of early intervention (Pullen, 2008). Perez (2006) suggested that 90% of brain growth occurs in the first four years of life and that preschool programs are able to allow children a learning opportunity to prepare them with the skills that they will need to achieve further in their academic careers. Most communities now strive to provide preschool opportunities to all children. Perez stated that children who attend quality preschools are more skilled in reading and math, less likely to be placed in special education, and more likely to graduate. It has been suggested that interventions that are early, intensive, and involve the family lead to the greatest impact on a child with autism (Webster, Feiler, &
Webster, 2003).
The Individuals with Disabilities Education Act (IDEIA, 2004) defined early intervention services as developmental services that meet the needs of infants or toddlers with disabilities. According to Boyd et al. (2010), "The increased prevalence of autism spectrum disorder (ASD) and its detection during the first 3 years of life have substantial relevance for early intervention" (p. 75). Research supports that children's prognoses are improved when children participate in early intervention services (Simpson et al., 2005).
According to Perez (2006), children enrolled in quality preschool programs are much more likely to succeed in school and in life, and as such "society reaps short- and long- term benefits from investing in preschool programs" (p. 3). CEICA (2001) stated that a significant number of children with ASD make progress after receiving early intervention services. Nearly all children with ASD participating in early intervention services show some benefit.
A 2011 study conducted by Itzchak and Zachor explored the progress in adaptive and cognitive skills made by young children with autism who participated in an early intervention program. Those programs included ABA or eclectic center-based programs. 36
They examined 78 children under the age of 35 months. They found that after one year of early intervention services, their verbal skills increased significantly. Additionally,
Itzchak and Zachor found that the severity of characteristics of autism had decreased.
Because research suggests that there are positive outcomes for children involved in early intervention programs, it is important to conduct research on early intervention methods in order to determine effective methods and uncover new information in order to improve existing methods.
Mahoney (1997) described early intervention as a voluntary program, in which
parents are able to choose to participate and the level of participation. They are "services for infants and toddlers that are designed to identify and treat a problem or delay as early as possible" (Home, 1990, p. 2). Boyd et al. (2001) outlined two classifications within early intervention practices. The first is focused intervention and the second is comprehensive treatment models (CTMs). Focused intervention practices refer to specific teaching procedures that are focused on the child's individual goals. These types of
interventions include behavioral intervention strategies, positive behavior support,
naturalistic interventions, parent-implemented interventions, picture exchange
communication systems, pivotal response training, structured work systems, and visual
supports. On the other hand, CTMs are more comprehensive techniques focused on more
general concepts. Examples of CTMs include Children's Toddler School, Project DATA
for Toddlers, Early Start Denver Model, Early Social Interaction, and Walden Toddler
Program (Boyd et al., 2001).
The process of identifying students with special needs and ensuring early
intervention services differs from state to state. However, most states follow a guide of arranging an assessment, assigning a case manager, creating an Individualized Family
Service Plan, and determining what services are necessary to meet the child's needs.
Special needs preschool programs are specifically designed for children ages 3-5 with
disabilities who are educated in the public school system (Home, 1990). Children under
the age of 5 may be identified as having a special need through preschool screenings.
Children entering preschool programs with a disability will need to qualify for special
education services. Upon determination that the child is eligible for special education
services, an Individual Education Plan (IEP) is written. The IEP specifies the preschool
services needed and the types of services to be provided (Arizona State Dept. of
Education, 2007). According to the Arizona State Department of Education, parents
should be aware of the changes in services from a medical model to an educational model
to ensure a smooth transition from home-based interventions to a preschool early-
intervention program.
Parents of Children with Autism
The Individuals with Disabilities Education Act (2004) defined a parent as a
natural, adoptive, or foster parent, a guardian, or an individual acting in the place of a
natural parent. Parents of children with autism have not always had the best reputation
among the autism research community. When autistic traits were first identified, parents
were viewed as contributors to their child's condition (Feinstein, 2010). The cofounders
of TEACCH, Schopler and Reichler, were among the first in the autism research
community to oppose this view. Schopler, who had attended the University of Chicago,
had begun working with Bettelheim at the Orthogenic School in the 1960s. Schopler's
opposition to Bettelheim's views continued as he cofounded the Child Research Project 38 at the University of North Carolina, which led to TEACCH. Schopler, along with
Reichler, sought to teach parents to participate in their child's educational progress
(Feinstein, 2010). With this change in perception towards parents came more support and
resources for parents of children with autism. One organization in particular, The Autism
Society of America, was founded specifically to provide support for parents of children
with autism (Mesibov et al., 2004). It was formed in 1963 and initially referred to as the
National Society for Autistic Children. The first formal congress took place in July 1969.
At this meeting, Kanner stated that he believed that the behaviors of parents of children
with autism did not contribute to their child's condition (Feinstein, 2010).
Autism professionals and service providers no longer view parents of children
with autism as contributors to the disorder. However, as Busch (2009) pointed out, most
programs focus first on treating the child. Addressing the needs of the parents, including
their stress levels, frustrations and coping abilities has been secondary until recently.
Currently, more and more studies are being concentrated on the parents of children with
autism in order to examine their needs, concerns, personal philosophies, and attitudes
towards intervention.
In the 1990s, there seemed to be a shift in research from blaming the parents to
focusing on their stress levels and coping skills (Mesibov et al., 2004). Many studies
began to focus on parents' concerns for their child. For example, Kohler (1999)
conducted an interview with families of children with autism in the Pennsylvania area.
He examined the services received by children with autism from ages 3 to 9. Kohler
found that they were concerned most with delays in diagnosis, ineffective treatment, and
problems with their child's service providers. A 1999 study by Kasari, Freeman, 39
Bauminger, and Alkin also sought to determine whether a child's diagnosis of autism, their age, or their current educational placement affected their parents' perspectives of inclusive education. Recently, a study by Ogston, Mackintosh, and Myers (2011) examined the relationship of hope and worry in mothers of children with autism and
Down syndrome. Ogston et al. found that mothers with higher rates of hope reported lower levels of worry. The mothers with lower worry had more education and older children or children who were high functioning. The child's age, their level of functioning, their specific diagnosis, and the mother's education affected the levels of hope and worry (Ogston et al., 2011).
Meadan, Halle, and Ebata (2010) examined the impact of having a child suffering from autism puts on a family. Through their extensive review of literature, they determined that there was a need for interventions to be family focused. Meadan et al. stated that, "professionals and service providers should anticipate specific challenges to families that are likely to occur during various transition periods for the child and consider targeted types of services, supports, or interventions" (p. 31). Meadan et al. found that in order to assist families in coping with stress, three suggested strategies could be used: quality care for all family members, informal and formal support for all family members, and educational programs that allow all family members access to the services. Meadan et al. determined that, "parent education and training programs also are a vehicle that may contribute to feelings of control and support" (p. 32). These and similar studies marked the attitudinal shift from only focusing on the child to realizing that the parents' needs, feelings, and attitudes may be pertinent to the child's treatment. 40
In 1977, Dwinell presented a paper at the Annual International Convention of The
Council for Exceptional Children examined the role of parents of gifted preschool students. The paper focused on a program for preschool children with gifted abilities. The program's philosophy was centered on the idea that a home, school, and community relationship is vital to the child's education.
A qualitative case study conducted by McCloskey (2010) used positioning theory to examine a parent of a preschool child with special needs. The parent used a variety of positioning methods—including interactive and reflexive—to be actively involved in her child's education and interventions. Over a course of 3 years, McCloskey attended, audio-taped, and transcribed formal and informal meetings at the preschool. Additionally, the parent participated in separate interviews and the student was observed twice a week in the classroom. Data collected suggested that the mother was able to use a variety of positioning methods in various situations in order to remain involved in some aspect, whether equally involved in a role of parent and therapist or in a role of just parent.
Through interviews with the mother of a child with autism, McCloskey noted that the mother stressed the importance in the therapists "clicking" not only with the child, but also with the mother. McCloskey determined that because the mother took such an active role in her child's intervention process, it was necessary for the mother and the therapist to have an effective working relationship.
A qualitative study in 2006 conducted by Stoner and Angell focused on the roles of parents of children with autism in the monitoring of their child's education and interactions with school professionals. Stoner and Angell interviewed eight parents of children with autism who were selected using purposeful selection methods. The 41
participants were administered an open-ended, semi-structured interview that lasted for approximately 90 minutes that were audio-taped, transcribed, and analyzed. The
responses were coded line-by-line and categories of perspectives were formed. Those
categories were compared across cases. After analyzing the data, the researchers found
that the parents engaged in four roles: negotiator, monitor, supporter, and advocate.
Finally, they found that the parents' level of trust of the professionals affected the roles
that they played as parents.
In addition to the increase in research regarding the parents of children with
autism, there was also the introduction of parents' involvement in the intervention
process. The increase of family involvement has been a trend in early intervention
programs. Parents are encouraged to become collaborators and advocates for their
children, as well as receive support themselves (CEICA, 2001). CEICA suggested that
parents should take an active role in their child's treatment. Among the many treatment
interventions for people with autism, there are several that stress the importance of parent
involvement in the interventions. The extent of involvement varies from a minimal
involvement to the parent serving as a co-therapist. Some intervention methods expect
the parents to continue the intervention methods when the service provider is not present
(Busch, 2009). Liontos (1992) examined family involvement in schools, specifically for
at-risk families. He found that many educators were not interested in family concerns.
Bailey (2001) examined parent involvement and family support in early
intervention and preschool programs. He described three levels of accountability for the
programs in providing family support, including providing the legal amount of service to
families, providing recommended services, and achieving certain outcomes. Bailey 42 explained that while there is no single definition for what family involvement should be, there are three themes that are commonly accepted. The first is that parent involvement should be individualized. Second, parents should be able to take an active role in the planning of their child's services. Finally, the services should be organized in a way in which the families are able to advocate for their child. According to Bailey, "parent involvement and family support efforts in early intervention are multifaceted and can be conceptualized simultaneously as a set of policies, a set of program models, and a variable set of practices" (p. 2). Bailey determined that parent involvement not only includes allowing the parents to be involved, but also having them take an active role in making decisions and becoming advocates for their child.
Bailey (2001) examined parent involvement from four aspects: policy, program, practices, and philosophical perspective. From a policy perspective, Bailey identified family involvement as based in the IDEA. IDEA states that the goal of early intervention is to assist families in meeting the needs of children. However, as Bailey explained, individual programs differ in how they define parent involvement. Most programs see parent involvement as a segment of the many services that they provide. The varied practices of individual programs are driven and informed by that program's philosophical perspective.
McConnell (2001) also suggested that there is much variation among the programs in regards to their level and degree of family involvement, along with the program's purpose and goals. Bailey (2001) suggested that intervention programs should form partnerships with the parents, should allow parents to be involved in the evaluations of the program, and that it was necessary to determine parents' perspectives on the 43 child's learning goals. Addressing each family member's needs and desires is a characteristic of family-centered intervention approaches (CEICA, 2001).
Kovanen (2001) examined family-centered practices in early intervention programs in Finland. He found a discrepancy between the professionals' philosophies regarding parent involvement in assessments and the actual practices that occurred.
Kovanen stated that, "Professionals' actual practices were more psychologically oriented than family centered, although their appreciation and acceptance of family-centeredness suggested the opposite" (p. 29). It was determined that while the professionals viewed their own perspectives as being objective, they viewed the parents' perspectives as being subjective. Additionally, it was found that the parents and the professionals differed in their expectations (Kovanen, 2001).
Bellin, Osteen, Heffernan, Levy, and Snyder-Vogel (2011) compared parent and healthcare professional perspectives towards Family-Centered Care at an urban hospital in the United States. Family-Centered Care is an approach of service delivery for children with special needs and their families. The study included 92 parents and healthcare professionals. The parents were administered a questionnaire to determine their perceptions of the extent to which the professionals were reflecting the Family-Centered
Care principles. Healthcare professionals were also assessed to determine the extent of their practices. Data were analyzed using an analysis of variance to test for differences between the groups. It was determined that there were no significant differences between the parents and the healthcare providers' perspectives regarding the extent to which the
Family-Centered Care services were being implemented. 44
Carbone, Behl, Azor, and Murphy (2010) conducted a qualitative study to examine the differences between perceptions of parents and pediatricians regarding the needs of children with autism and their families within the medical home, a model of care that is comprehensive and family-centered. The researchers organized two focus groups, each lasting for 90 minutes, and including parents of children with autism and their pediatricians. Five parents participated in the study. The parents and pediatricians identified what they perceived as being unmet needs. The research team took detailed notes and audio recorded the sessions. They analyzed the data by identifying significant themes and selecting poignant quotes. Themes that emerged were the role of the medical
home, the diagnosis and management of ASD, caregiver stress, and complementary and
alternative treatments. Data revealed that parents perceived physicians as not acting early
enough in diagnosing their child. They also noted that the care was not as comprehensive,
coordinated, and family-centered as they hoped it would be. The data also revealed the
pediatricians stating that while they hoped to improve services, they lacked the time,
training, and resources to do so.
When involving parents in the interventions, it is important for the parents to have
a positive working relationship with the service providers. Several qualitative studies
have been conducted to determine helpful strategies for service providers when working
with parents of young children with mental health concerns (Sax, 2007). According to the
CEICA (2001), "Parents of young children typically are focused on understanding their
child's diagnosis, dealing with the emotions that are stirred by encountering a serious
problem in their child's development, finding services, and working intensively on behalf 45 of their child" (p. 37). By providing support to the parents, educators and other professionals are able to help them cope.
Hillmam (2006) outlined the role that the psychologist can play in supporting families of children with autism. She described that psychologists can aid families in three ways: they can be informed about treatment interventions and inform the parents, they can help families develop a treatment team and overcome barriers, and they can
provide mental health support.
Benefits of Parent Involvement in Intervention
Some intervention programs support the involvement of parents in the
intervention process. Family involvement and support is especially important in early
intervention programs. It has been suggested that parents should take an active role in the
child's treatment in order to ensure that their child is able to transfer the skills learned in
the intervention program into the home and other environments (CEICA, 2001).
In a 1997 article, Mahoney noted that family-centered interventions are
philosophically focused on supporting and enhancing the effectiveness of parents of
children with special needs. In response to an article by Baird and Peterson (1997),
Mahoney agreed that family-centered philosophy is most appropriate for early
intervention practices. Mahoney agreed that families should be given choices and their
personal values should be respected as suggested by Baird and Peterson.
According to Schwartz and Rodriguez (2001), "family support has been and
continues to be one of the elements of EI/ECSE that differentiates it from other types of
special education and social services" (p. 20). Intervention programs that involve parents
suggest that the involvement of the parents will bring added benefits and produce the best 46 possible outcomes for the child and the parents. Several studies have determined benefits for both the parents and the children involved. The Acceptance and Commitment
Therapy, known as ACT, emphasizes acceptance by the parents, along with the clarification and commitment to personal values (Busch, 2009). According to Busch, this type of training could give the parents of children with autism better coping skills, increased tolerance to stress, and higher perceptions of their self-efficacy. Busch stated that ACT is "a compatible form of treatment that inherently speaks to the experience of these parents. It offers a distinct and appropriate means of addressing the concerns and difficulties this population faces by focusing on developing more effective coping strategies" (Busch, 2009, p. v). The methods used by ACT have positive benefits for the parents, which, in turn, have positive outcomes for the children as well.
In a 2009 study, Busch determined that parents of children with autism, who were able to maintain the treatment routines and demands while remaining calm, were better able to respond to their children. This led to more consistent and effective interventions.
Busch suggested that parents who had accepted their child's condition and sought support had lower levels of stress and better overall mental health. It is important for service providers to assist parents in achieving less stress and better mental health. According to
Busch, this would result in the parents being better able to respond to their children's special needs.
In addition to lower levels of stress and positive outcomes for their children, involving the parents in the treatment process can also lead to increased empowerment.
This was true for at least one parent who had experience with TEACCH during the early years when many blamed parents for their child's condition. According to Feinstein 47
(2010), she stated that, "Once you are dealing with professionals who are not looking down on you, and treat you as another professional, that really empowers you" (p. 124).
Thus, it may be determined that the parents' involvement in this intervention method had
positive effects. CEICA (2001) determined that, "the identification of parents as serving a
key role in effective treatment of their child has great benefit for the child" (p.33).
In the late 1980s, Southern University began the development of a teacher
education program specifically for future teachers of preschool children with special
needs. During the implementation of the program, families of preschool children with
disabilities were recruited and interviewed to determine their needs and if their needs
could be effectively met through the program's services. Through the assurance that the
program would educate teachers in not only meeting the needs of the students but also the
families, the program was able to increase its impact for the future of education
(Bockmiller, 1994).
Treatment and Education of Autistic and Related Communication Handicapped Children
(TEACCH) Philosophy
TEACCH is a program that strongly encourages parent involvement in the
intervention process of the child in treatment. This program was developed with the
philosophy that the most effective interventions include parents as "co-therapists."
TEACCH emphasizes individual interventions with both the child and their parent.
Because available treatment is only useful if the consumer, or parent, accepts it; it is
important to understand parent receptivity towards a treatment approach (Hausler, 1998).
Parent beliefs about the etiology of autism are very important in regards to
participation in the TEACCH program. For example, if parents believe that they somehow caused their child to become autistic, their feelings of guilt may negatively affect their relationship and ability to work effectively with their child. If the parents' beliefs differ greatly from the TEACCH interventionist's beliefs regarding the causes of autism, that relationship could also be negatively affected because of differing expectations for the child's progress (Hausler, 1998). For example, if the parents believe that severe food allergies somehow contribute to their child's condition, then they may expect that, by changing their child's diet, they may be able to "cure" their child. On the other hand, Mesibov and Shea (1998) explained that the TEACCH program acknowledges that autism is an organically-based condition and that its effects are not reversible. As such, TEACCH does not seek to "cure" the child but to respect differences and to teach children the necessary skills to be successful members in society (Mesibov
& Shea, 1998). In this situation, the differences in etiological philosophy between
TEACCH and the parents would result in differences in opinion regarding the goals for the child.
In terms of TEACCH, parents that are involved with the program are expected to agree with its philosophy, practice, and goals in order for it to be effective. Hausler
(1998) suggested that parents might agree with the TEACCH ideals of focusing on a child's strengths and on the goal of helping the child to become successful rather than
"curing" them. Hausler illustrated this by explaining that, while qualitative studies reported that parents of children with autism expressed difficulty with their levels of stress and psychological problems, they also reported that their child had enriched their lives and that they had a greater appreciation of their child. There are additional core beliefs of TEACCH that parents would need to agree with. For example, TEACCH does 49 not put much emphasis on providing reinforcements. In fact "the TEACCH model works from the idea that task performance and task completion will be motivating for children if they understand a task that is at an appropriate developmental level and that builds on individual interests" (CEICA, 2001, p.164). If the parents' personal beliefs are in favor of using reinforcements for their child's behavior, then those views would not align with the
TEACCH philosophy and would negatively affect the intervention practices.
Parent Attitudes
There are many parents who have ideals and philosophies that differ from those held by the TEACCH program. Some parents try many types of treatments in the hopes that it will "cure" their child. Busch (2009) suggested that some parents might even put their child and their family in danger with such extremes as the use of restricted diets, alternative medical treatments, or dangerous medical procedures. Seeking to "cure" the child and focusing on their deficits rather than their strengths is the polar opposite of the goals of the TEACCH program, as outlined by its conceptual model.
As previously mentioned, Hausler (1998) suggested that some parents of children with autism had reported that their child had enriched their own lives. A 2009 study, conducted by Myers, Mackintosh, and Goin-Kochel, also found that parents were able to find positive effects of their child's diagnoses. This qualitative study questioned parents regarding how their child with autism has affected their lives. They identified 15 negative themes and 9 positive themes. It was concluded that although there was stress and other difficulty in raising a child with autism, some parents were able to find positive points in their lives through these children. 50
Myers et al. (2009) questioned 493 parents of children with autism using an online questionnaire. The parents' written responses were coded for themes. The statements given by the parents were rated as positive, negative, or mixed. Myers et al. determined that 48% of the statements had a negative tone throughout. The researchers
found 39% of participants offered statements that were mixed, discussing both problems
and joys. Ten percent of the parents gave completely positive responses. Those parents discussed how their child had positively affected their lives by making them better
persons and that they appreciated their child's unusual behavior. Finding positive aspects
to their situations allowed the parents to have hope that their family would "find their
way and make sense out of what life has given them" (Myers et al., 2009, p. 682).
The attitudes of parents of children with autism can differ for various reasons
including differences in culture and the country from which they originate. According to
Hausler (1998), "autism is differently conceptualized in different countries and thus
parents' attitudes toward and receptivity to various treatment approaches, too, are not
universal" (p. iii). Attitudes regarding autism can also differ between people of the same
culture. Olkin (1999) identified three models of disability in which people define and
understand disability, including moral, medical, and social. Those models of disability
affected people's attitudes and perspectives.
Additionally, parent attitudes can be affected based on their personal beliefs. A
study conducted by Harrington, Patrick, Edwards, and Brand (2006) investigated parent
beliefs regarding the etiology, diagnosis, and treatment of autism. They determined that
26% of the parents believed that there was one specific cause for their child's autism and
that this belief affected their attitudes. Harrington et al. concluded that physicians should 51
"sustain an open, trusting relationship with parents of children with autism" by inquiring about the parents beliefs (p. 460).
In 2011, Dardennes et al. explored the causal beliefs of parents about autism and its relationship to treatment choice. A questionnaire was given to 78 parents of children with autism. The data revealed that most parents believed that their child's autism was caused by brain abnormalities and genetic factors. Some parents indicated that they believed that early traumatic experiences led to their child being diagnosed with autism.
Others believed that the cause was illness during pregnancy. Still, other parents believed that food allergies were to blame for their child's condition. It was determined that parents who accounted early traumatic experiences as the cause of their child's condition were less likely to use behavior therapy and Picture Exchange Communication System.
Parents who attributed an illness during pregnancy to their child's condition were more likely to choose medication. Parents who believed that their child's autism was a result of a food allergy were more likely to use detoxification treatments and special diets.
Therefore, it was concluded that the parents' causal beliefs were related to their choice of
treatment for their child with autism; these parental conclusions had definite implications
for the current study.
Research has also been conducted regarding parent attitudes and perspectives
towards those who provide services to their children. A 1975 paper, written by a parent
and a teacher, examined the expectations of parents towards parent cooperative
preschools. According to Harms and Smith (1975), the parent cooperative philosophy is
focused on shared responsibility between the parent and the teacher: parent and teacher
should work together towards a common goal. The philosophy also encourages parent 52 participation and teacher acceptance. Finally, it encourages the use of a consistent philosophy.
A 2005 study by Goin-Kochel and Myers also examined causal beliefs of parents.
Parents of children with autism completed an online questionnaire regarding their child's development. Half of the parents indicated that their child showed symptoms of autism from birth while the other half felt that their child was developing typically before regressing. While there were a wide variety of causal beliefs indicated by the parents, the most cited were genetics and external mechanisms. Researchers found that parents who indicated that their child showed symptoms of autism from birth, known as congenital emergence, were more likely to consider genetics as the cause for their child's condition.
On the other hand, parents who felt that their child had regressed attributed their child's autism to external mechanisms, such as vaccinations or environmental toxins. These data had implications for the current study.
Some studies have resulted in suggestions that there is a relationship between parent involvement and parent beliefs. In a study centered on the creation of a collaborative literacy program for African-American adolescent mothers and their children with special needs, Neuman (1993) obtained data regarding the parents' beliefs about learning and literacy through group discussions. He found that the parents had a wide variety of child development perspectives, including transmission, maturational, and transactional beliefs. He also found that the parents and the professionals had shared goals for the children.
A 2009 study by Kratz, Uding,Trahms, Villareale, and Kieckhefer examined the perspectives of 199 parents of children with childhood chronic illness. Researchers 53 collected data during classes for the parents of children with chronic conditions over a
2-year period. The class consisted of a randomized clinical trial of a curriculum,
"Building on Family Strengths," which was developed to strengthen parents' confidence
level. The parents explained the challenges that they had faced and the helpful strategies that they used. Kratz et al. analyzed the data collected through qualitative means to reveal dominant themes. They found that parents identified challenges such as social isolation, strained relationships, and ongoing frustrations with healthcare and educational systems.
They identified helpful strategies, such as being prepared, connecting with peers,
becoming an advocate, developing partnerships, and caring for one's self. According to
Kratz et al., the emerging themes were analyzed separately for each class and topic, and
then compared. Of particular interest was the first effective strategy identified: reframing
one's perspective and adjusting expectations. Parents reported "how one thinks
influences how one feels and acts" (Kratz et al., 2009, p. 307). The parents determined
that by making adjustments to their perspectives, they were able to more effectively
respond to challenges.
Kratz et al. (2009) also revealed that the parents indicated that there were positive
aspects of being the parent of a child with chronic health conditions. The researchers discovered that even when the parents talked about encountering challenges, they also
discussed positive aspects of having a child with chronic conditions. Parents stated that
their children showed increased compassion, tolerance, and maturity. They also described
themselves as having increased appreciation for what was important in life and
understanding life's meaning, personal growth, and inner strength. Kratz et al. suggested
that service providers should support and guide parents in managing their child's needs 54 by addressing stressors and encouraging parents' confidence level and competency. They encouraged service providers to build partnerships with parents by actively sharing information and educating the parents. Additionally, they noted the importance of identifying the desired approach for the parent. According to Rratz et al., service providers should have an understanding of parents' roles and responsibilities, in order to develop a positive parent/provider relationship.
In 2004, Palmer, a mother of a college student with autism, shared her personal thoughts regarding her son. Palmer explained that her son was a wonderful and unique young man, and that fact may have been as a result of his having autism. Palmer recommended for other parents to accept their child for who they are as human beings.
Huhtanen (2009) wrote an article examining mothers' attitudes toward having a child with autism. Huhtanen, in the article, described one mother having a feeling of not wanting to fail her child. This attitude drove the mother to make several decisions— including, moving out of state—in order to ensure that her child received the best treatment. Another mother was described as having a wealth of knowledge concerning autism therapies. That mother explained that when her child was diagnosed with autism, she was given no hope or options by the developmental pediatric team. One may wonder if her drive to educate herself on available treatment options was in response to that negative experience.
Valenzano and LeBauad (2011) stated in examining the positive attitudes of family members related to someone with autism, they found a mother of a child with autism describe how she chose to have a positive outlook towards her child's diagnosis.
The mother indicated that she did have expectations for her child's development. The 55 child did not always achieve developmental milestones she had set for him, but added,
that when he did achieve milestones, it was a source of celebration. A brother of a child
with autism noted that he was more patient because of growing up with an autistic
brother. A sister stated that she would not want her life with her autistic brother to be any
different. She commented that she learned how to be more tolerant and patient and that
her parents had taught her to stay positive in life.
Another article written from the perspective of a parent of a child with disabilities
explained that parents and treatment professionals view a handicapped child differently.
Those parents explained that sharing their perspectives could aid other parents and
professionals in discovering new opportunities for their children with special needs
(Gerlach, 2002).
Buckley (1994) examined the responses of 287 parents of children with gifted
abilities regarding their personal philosophy. Buckley determined that by knowing the
philosophical positions and conceptions of parents of children with gifted abilities, the
school community would be able to examine, explore, and create a meaningful
educational framework for the students. Additionally, Buckley indicated that knowledge
could assist educators in planning, determining educational options, and in facilitating
parent participation and collaboration. Buckley also stated that understanding parents'
perceptions could support future research and identify goals and practices for the
educational community in working with children with special needs.
Yura (1983) discussed the typical expectations that all parents have for their
children's future, and how those expectations can be lost when they discover that their
child has a disability. Parents initially may feel confused, desperate, and fearful. Yura 56 explained that passive or defeatist attitudes from parents might impede their role as change agents. Yura stated that, "understanding parental attitudes toward a special needs child is vital in implementing effective child rearing practices" (p. 371). Parent attitudes may have an effect on the interactions between the parent and the child. It was determined that one factor that may contribute to the parent attitudes is their prior emotional responses to past experiences, such as their child's diagnosis with a special need. Yura suggested that it was important for parents to be aware of and acknowledge their attitudes in order to how best support the child with special needs.
Scorgie, Wilgosh, and McDonald (1999) conducted a study in which they examined the perspectives of parents towards aspects of life management. The mixed- methods study consisted of open-ended interviews with 14 parents along with an analysis of 80 surveys. The data indicated that positive personal reframing, balancing roles and responsibilities, and utilizing resources were the most effective life management strategies referred to by the parents interviewed. The majority of parents indicated that acceptance of their child's disability and valuing their child as contributing to the family was an important asset: Parent attributes, their decision-making ability, and personal philosophy of life were themes that arose regarding parent characteristics. The study concluded three transformations emerged during the interviews: personal transformations of the parents, rational transformations, and perspective transformations. Scorgie et al. also uncovered certain characteristics of professionals that the parents indicated as being helpful, including allowing parents of special needs children to express their thoughts and opinions. 57
Pullen (2008) examined parents' attitudes towards their own acceptance of their children. Pullen explained that the philosophy of play-based therapy included the need for parents to do away with any preconceived expectations for their child and learn to accept their child for who they were. Pullen noted that through acceptance of their child, the parent would be better able to be helpful in the child's development.
Mulick and Butter (2002) suggested that it was important to understand parents' motives for pursuing certain measures in their child's education. They examined parents' rationale for the implementation of intensive behavioral intervention in their child's education, determining that it was either value-based or emotional. They described parents' feelings that could affect the decisions they made for their child and explained that parents felt that when they looked at their child, their view did not match the plans and expectations that they had had for their child. Mulick and Butter explained that parent expectations for their child might affect their interactions with their child's intervention team. The intervention team's views often differ from these of the parents in that interventionists do not seek normality for the autistic child because they have set realistic goals. There was "a discrepancy between the parent's expectations and the expectations of autism" (p. 61). Mulick and Butter concluded that a successful advocate was necessary to understand the family's needs and hopes for their child.
A study in England, in 1982, conducted by Clark, Robson, and Browning, included data related to the choices and attitudes of parents of preschool children with special needs. Over the course of 2 years, data were collected regarding parent involvement, parent choice, and parent attitudes. After interviewing staff regarding parent involvement in regular preschool units containing few students with special needs, the 58 researchers found that most parents were eagerly involved. It was stated that there was a noticeable lack of involvement among Asian mothers. The staff in the ordinary preschool units did state that they would welcome and encourage more parent involvement. On the other hand, during interviews with staff from preschool units with a majority of special needs students, known as special nursery units, many staff members stated that they did not and would not encourage parent visits. Those staff members regarded parents as being disruptive. Other "special nursery units" did welcome parent involvement but noted that they did experience difficulty in encouraging it. One suggested reason for this was that parents may have been in denial regarding their own child's condition and also that they did not want to see other children with more severe disabilities than their own child.
In the same study by Clark et al. in 1982 in England, short, structured interviews were conducted with 13 parents of preschool children with special needs. During the interviews, it was uncovered that while nine of the parents were satisfied with the services provided to their child, four parents felt that more could be done for their child.
Many parents indicated that they believed that early intervention in preschool was vital for their child's development. Without the additional help at an early age, they were worried that their child might not make adequate and timely progress. During an interview with one parent, it was discovered that her son, who had developmental delays, had not received services in his preschool. The parent had agreed with this decision because she did not want her son to be singled out as being "different" from the other children in the classroom. From the interviews, Clark et al. determined that parents should have more information readily available to enable them to make appropriate 59 decisions regarding their child's education and that parents should be informed as much as possible regarding services available to their child with special needs.
Disability Theory and Parent Attitudes
Similar to the beliefs regarding the etiology of autism, parents' agreement with
the disability theory may also determine treatment goals for their children and attitudes
regarding their child's diagnosis and interventions. The disability theory suggests that
people with disabilities are often discriminated against in today's society because they are
seen as not being "normal." This discrimination can be seen in the form of exclusion,
oppression, and the widespread belief that having an able body and mind allows one to be
a "quality human being" (Siebers, 2008, p. 4). The identification of a disability is a form
of social injustice, not a social deficit; therefore, there is no need for a "cure" (Siebers,
2008, p. 3).
Advocates of the disability theory argue that the disabled population has basic
human rights and should be respected for their differences, not discriminated against
(Mulvany, 2000). They claim disability as a positive identity and value it as a form of
diversity (Siebers, 2008). Disability studies do not focus on curing the individual with
disabilities, instead, they focus on altering the environment in order to reverse negative
emotions and connotations related to disabilities (Siebers, 2008). Busch (2009) further
explained that disabilities only exist in a society that is inaccessible and not accepting. He
demonstrated this idea with the example that someone in a wheelchair is only considered
disabled because most structures are built for people who can walk. Parents of children with autism, who are proponents of the disability theory,
would view their child's disability as something to be valued. They would agree with the
following statement:
Tired of discrimination and claiming disability as a positive identity, people with disabilities insist on the pertinence of disability to the human condition, on the value or disability as a form of diversity, and on the power of disability as a critical concept for thinking about human identity in general. (Siebers, 2008, p. 3)
Parents would not seek to "cure" their child but would instead focus on the positive
effects of their child's diversity that may contribute to society. As Siebers discovered,
"many disabled people do not consider their disability a flaw or personal defect—and
with good reason. They are comfortable with who they are, and they do not wish to be
fixed or cured" (Siebers, 2008, p. 4). This belief regarding their child's disability would
greatly affect a parents' expectation regarding their child's intervention program.
Siebers (2008) recounted an essay published in The New York Times in which the
focus was that some individuals who are deaf or are little people chose to not screen out
their genetic traits when having children. Instead, those individuals chose to select those
genetic traits in order to allow their children to continue the disability culture. This
situation acknowledges the fact that many people that are considered to be disabled or
abnormal are actually proud of their diversity and do not see it as a deficit or a struggle.
However, the author of the essay, among many others, greatly opposed this action,
suggesting that individuals with disabilities need to be eliminated (Siebers, 2008).
While the disability theory's focus differs from that of the TEACCH philosophy
in that TEACCH acknowledges the disability, there are many similarities as well.
Advocates for both philosophies stress the importance of respecting differences and in
making environmental alterations (Mesibov et al., 2004; Siebers, 2008). Therefore, 61 parents who agree with the disability theory may have more similar treatment outcomes with the TEACCH interventionists than parents who are focused on "curing" their child's condition.
Parent Views of Intervention Programs
Several intervention programs have chosen to determine parent satisfaction after being involved with their treatment program. Examining parents' perceptions and attitudes is a widely accepted way of accessing an intervention program (McWilliam,
Young, & Harville, 1996). Kohler (1999) further stated that data on parent perceptions can be used to make improvements in programs and to convince policyholders of the effectiveness of programs.
A 1998 study examined the attitudes and experiences of parents of children with autism towards treatment. Parents in Germany, United States (North Carolina), and
Denmark were interviewed based on their etiological beliefs, locus of control for child improvement, attitudes and experiences with service providers and professionals, attitudes and experiences regarding parental roles in the TEACCH program, their knowledge of treatment, treatment evaluation, and their attitudes towards treatment goals.
The parents in the U.S. (North Carolina) and Denmark had prior experience with the
TEACCH program. In regard to the TEACCH philosophy pertaining to parent involvement, the researchers found that the German, Danish, and American parents all had positive attitudes. However, the German parents did not seem to value the co-therapist relationship as much as the parents who had prior experience with TEACCH.
The Danish and American parents had a high level of satisfaction with TEACCH (as cited in Hausler, 1998). Based on the results of this study, one may determine that the 62 philosophies of the parents regarding autism and the intervention goals were similar to those held by the TEACCH program.
A 1998 study explored parent reactions to the adoption of a Reggio Emilia
Approach in an Iowa Head Start classroom. Reggio Emilia is an approach that was developed in the mid-1940s in Italy. The approach allows children and parents to take an active role in the education process. McClow and Gillespie (1998) asked the parents a series of questions during a focus group regarding the adoption of the Reggio Emilia approach. They found that the majority of parents were not knowledgeable regarding
Reggio Emilia. Many parents were supportive and had positive attitudes of the new approach. However, some parents did express concerns. Those concerns included fear that their children would not be academically prepared for kindergarten. Other concerns were based on parents' misunderstanding regarding the curriculum planning. McClow and Gillespie determined that communication was key in addressing the parents' concerns.
Another study conducted in England focused on the views, perceptions, and reflections of local authorities regarding assessment and intervention of children under the age of 5. The local authorities were purposefully selected and the data were collected during focus group sessions. Emerging categories included extent of change, assessment, intervention, reporting, multi-agency working, and role of specialists/experts. The participants expressed concerns regarding the impact of government initiatives. Positive changes expressed included increased parent involvement and assessments. Most participants indicated that there was a lack of clarity regarding the roles of professionals.
The researchers determined that the responses from the participants gave them an insight 63 into the changes that had occurred in the special education system (as cited in Robinson
& Dunsmuir, 2010).
Narrative Case Study
In order to determine the attitudes of parents of children with autism towards the
TEACCH conceptual model, the Culture of Autism, this researcher chose to conduct a qualitative narrative case study. There are many benefits for using qualitative research methods. Gillham (2000) outlined six, including allowing the researcher to carry out research where other methods cannot be used, allowing the researcher to investigate the situation in which there is little known, explore complexities, understand more about a group or organization, view a case from the perspective of those involved, and allowing the researcher to carry out research into the processes of the group. A narrative case study approach was chosen because it was determined that it was the best form to use in order to answer the research questions. The exploratory nature of the research questions fit easily within the case study framework. A case study approach allowed the researcher to answer the descriptive research questions regarding parents' attitudes towards the
TEACCH conceptual model (Yin, 2011) since it is descriptive and inferential in character and allows the data to be described and interpreted (Gillham, 2000). A case study is an empirical inquiry that investigates a phenomenon in depth and in context. This approach was chosen over other approaches for various reasons. For one, the use of a case study allows the researcher to explain the parents' attitudes in depth and make links between their attitudes and their prior experiences (Yin, 2009).
The use of a narrative study enabled the researcher to uncover the parent perspectives using a questionnaire. It allowed the researcher to share the participants' 64
experiences in their own words. Denzin and Lincoln (2005) suggested that narrative
studies not only describe experiences, they also allow the researcher to understand the emotions, thoughts, and interpretations of those experiences. According to Siebers
(2008), this is the method most preferred in disability studies. Qualitative research
methods have the ability to provide "rich" data, reveal complexity, and provide vivid
descriptions that have a strong impact on the reader (Miles & Huberman, 1994).
The researcher chose a case study methodology in order to narrow the focus of the
study to allow an in-depth examination of the parent attitudes. The researcher's focus was
to reveal the individual perceptions of parents and enable the researcher to observe the
differences and similarities among the participants (Thomas & Brubaker, 2008). Case
study research explores an issue through one or more cases within a bounded system. Of
the types of case studies, the present study can be considered a collective case study or a
multiple case study because multiple cases are used to illustrate the selected issue. The
researcher chose this method to demonstrate the variety of perspectives on the issue: in
this case, it was to demonstrate a variety of attitudes towards the TEACCH conceptual
model and how past experiences determine those attitudes (Creswell, 2007). Multiple-
case sampling allows the researcher to understand a single-case finding by analyzing
multiple similar and contrasting cases (Miles & Huberman, 1994). The individual cases
in the collection allow a better understanding about a larger collection of cases. A case
study approach can be used when focusing on cases that respond differently to situations
(Denzin & Lincoln, 2005). In this study, the attitudes of parents towards the TEACCH
conceptual model may or may not have been affected by their past experiences. In order 65 to examine the parents' variety of attitudes towards the conceptual model, a case study approach was considered the best fit.
Many other studies focusing on families and students with special needs have chosen qualitative means, including the narrative case study approach. Hillman (2006) used a case study approach to determine ways in which psychologists can aid families of children with autism. The use of a case study approach allowed Hillman to better illustrate the focus of her study. Carbone, Behl, Azor, and Murphy (2010) chose a narrative case study approach to examine the differences between perceptions of parents and pediatricians regarding the needs of children with autism and their families within the medical home. They noted that a qualitative method allowed for an in-depth exploration of themes.
Conclusion
For many decades, parents of children with autism were not involved in their child's treatment. In fact, many were blamed for causing their child's condition and their child was removed from their care. This notion is no longer held today and parents are becoming more involved in their child's treatment (Mesibov et al., 2004). In fact, many research studies are beginning to focus on parents' needs and attitudes and there are a variety of treatment programs that specialize in involving the parents in the interventions.
Many of those programs have determined the benefits of the parents' involvement
(Busch, 2009). However, Hausler (1998) stated that interventions are only beneficial when the consumer, or parent, in this case, is accepting of it. Additionally, differences in etiological beliefs may cause differences in opinions regarding treatment goals.
Therefore, it is necessary to identify parent attitudes and beliefs in order to determine their agreement with the treatment program being used. Regarding the TEACCH program, there is a need to uncover parent attitudes regarding their conceptual model to establish if the parents are in agreement with their etiological philosophy about autism and if their overarching treatment goals correspond. The following chapter of this study outlines the methodology in which those attitudes will be determined. 67
CHAPTER 3
RESEARCH DESIGN AND METHODOLOGY
The methodology of this narrative case study was based on a phenomenological study conducted by Kalash (2009), which focused on the perspectives of parents of children with autism towards their child's diagnosis and treatment options. While
Kalash's 2009 study used phenomenological methods and this study is a narrative, both studies focused on uncovering parent perspectives using interviews or questionnaires.
Instead of focusing on a phenomenon, the researcher chose to use a narrative approach in order to share the participants' experiences (Thomas & Brubaker, 2008). This study narrowed the parent attitudes to those in response to the conceptual model of the
TEACCH program.
The researcher chose to conduct a narrative case study because it was the methodology that would best answer the research questions. According to Thomas and
Brubaker (2008), the aim of a narrative study is to reveal individualistic perceptions.
Narratives enable the researcher to show differences or similarities among people and focus on the uniqueness of individuals' experiences and the way they interpret events. In this study, the goal of the researcher was to use the personal narratives of the parents to determine their attitudes towards the TEACCH conceptual model, and determine what experiences the parents had had with TEACCH that led to those attitudes.
Similar to Kalash's (2009) study, this study selected a small number of parents of children diagnosed with an autism spectrum disorder. In Kalash's study, 12 parents of 68 children with autism were interviewed. In the current study, 3 parents of children with
autism were given an electronic questionnaire. Like Kalash's study, those responses were
examined for significant statement sentences. Additionally, those "significant statements"
were organized into themes to be summarized to create a formulated meaning based on
the individual parent experiences.
In addition to their attitudes, parents were also questioned about their positive and
negative experiences with TEACCH since those experiences affected their attitudes. The
researcher believes that those experiences will allow the reader to understand parent
attitudes towards the TEACCH conceptual model. In this chapter, the researcher outlines
the research design, participant selection, data collection methods, and data analysis.
Problem and Purpose Overview
Mesibov et al. in their 2004 study determined that the involvement of parents in
the treatment process could assist their child with autism in preparing for a more
productive, independent life. This suggests that there are benefits of involving parents in
the treatment process. Hausler's 1998 study determined that parent's agreement of the
intervention goals and methods are not only suggested, but also necessary for its
effectiveness (Hausler, 1998). According to Hausler (1998), treatment is only useful to a
child if the parent accepts it. In order for the TEACCH interventions to be both useful
and effective, it is necessary for the parents of a child with autism to agree with its goals
and methods. Since the TEACCH conceptual model is at the core of the program and
largely affects its methods, it is first necessary to determine parent attitudes towards the
TEACCH conceptual model. Therefore, the purpose of this study was to understand the 69 attitudes of parents of children with autism towards the TEACCH conceptual model, known as "the Culture of Autism."
Research Questions
By utilizing a narrative framework, this study sought to answer the following research questions:
Primary Research Question
What are the attitudes of parents of young children with autism towards the
TEACCH conceptual model, the Culture of Autism?
Secondary Research Questions
1. How do parents of young children with autism interpret the meaning of the
Culture of Autism?
2. To what extent do parents of young children with autism agree or disagree
with the TEACCH conceptual model, known as the Culture of Autism?
3. What experiences have the parents had with the TEACCH program that has
affected their attitudes regarding the TEACCH conceptual model, known as
the Culture of Autism?
Population and Sample
In collaboration with the Autism Speaks Organization, this study was included on a research page for their website. Autism Speaks is a not-for-profit organization that was founded in 2005 by Bob and Suzanne Wright, whose grandson was diagnosed with autism. Autism Speaks focuses on raising awareness, funding, and supporting research on autism (Bernier & Gerdts, 2010). Requests for assistance in identifying participants were 70 sent to several national organizations, including the Autism Society of America. Autism
Speaks was the only organization that responded to this researcher's request.
Parents interested in participating in this qualitative case study by completing an
electronic questionnaire were asked to contact the researcher. Initially, the researcher
sought to identify the attitudes of parents of preschool children with autism towards the
TEACCH conceptual model. However, only two parents of preschool children agreed to
participate. Therefore, it was decided to expand the study to include parents of young
children rather than only parents of preschool children. For the purpose of this study, the
term young child is referred to as a child between the ages of 3 to 7 who participated in a
public education program. In the case that more than five parents of young children with
autism agreed to participate, the researcher determined that they would use purposeful
selection methods, as will be described later. All of the young children had received a
primary diagnosis of ASD by a licensed psychologist or psychiatrist.
If more than five parents had agreed to participate in the study, then only five
would have been selected using purposeful selection methods. According to Maxwell
(2005), purposeful selection methods allow the researcher to select participants that will
provide the information necessary to complete the study. When using purposeful
selection, it is important for the researcher to identify the features of the sample
population that are causal (Thomas & Brubaker, 2008). In this study, family structure,
socio-economic status, sex, the child's diagnosis, and region of residence were not taken
into consideration.
Maxwell (2005) described four possible goals for purposeful selection methods.
Those included the researcher selecting participants who are representative of the 71 population, who represent heterogeneity in the population, who are critical to the study, and who are able to be compared in order to demonstrate differences. This research study sought to meet all four of those goals.
The Institutional Review Board at Mercer University reviewed and approved the research protocol in this study. The protection of privacy of the participants was assured by informing the participants of the purpose of the study and of their right to withdraw at any time. Parent consent was also requested. The parents' identity was kept confidential at all times and was only known to the researcher. All data was secured.
The questionnaires were sent electronically via email to the parents to enable
them to complete their interviews at their own pace and at the location of convenience
and choice. If there were any difficulties in understanding the questions or if the parents
had any difficulty using a computer or email, they had the option of having interviews
conducted over the telephone or member checking through clarification of what was
meant by the participants' responses was offered.
Data Collection and Instrumentation
Materials
An electronic questionnaire (Appendix A), developed by the researcher, was
utilized during this study. The questionnaire was typed and emailed as an attachment to
the parents. The questionnaire began by asking parents to confirm that their child was
diagnosed with an Autism Spectrum Disorder (ASD), that their child was indeed between
the ages of 3-7, and that they had prior experience with TEACCH. This inquiry was used
to determine that the parents were eligible to participate in the study. They were then
asked if they were familiar with the TEACCH conceptual model and to describe the 72
TEACCH conceptual model in their own words. Next, they were asked what their attitudes were towards the TEACCH conceptual model and what positive or negative experiences they had had that had affected their attitudes. Finally, they were asked to explain their long-term goals for their child and to share any further information that was pertinent to the study.
Procedures
Electronic Questionnaires
For this study, only parents of young children with ASD were chosen to
participate. Those parents were invited to complete an electronic questionnaire regarding
their experiences with TEACCH and their attitudes towards the TEACCH conceptual
model via an informational advertisement on the Autism Speaks website. Parents were
assured of confidentiality and asked to complete a signed consent form indicating their
willingness to participate in the study.
All of the electronic questionnaires were sent via email to the participants. This
allowed the participants to complete the questionnaires at a time convenient to them
when they had little distractions. Therefore, the questionnaires were completed in the
setting of their choice. Each questionnaire was estimated to take approximately
30 minutes to complete; however, parents were allowed up to 2 weeks to complete them.
If the parents had any difficulty completing the electronic questionnaire, an optional
telephone interview was offered in its place. Additionally, if further clarification was
needed, a follow-up discussion via telephone was offered. Written permission for
participation was obtained prior to sending the questionnaire. The questions included in 73 the electronic questionnaire were structured and closed and open-ended. These questions included the following:
1. Does your child have a diagnosis of Autism Spectrum Disorder (ASD) given
by a licensed psychiatrist?
2. Is your child between the ages of 3 and 7?
3. Have you had experience with the Treatment and Education of Autistic and
other Communication Handicapped Children (TEACCH) program?
4. Are you familiar with the conceptual model, or philosophy, of the TEACCH
program, known as the Culture of Autism?
5. In your own words, please describe what you view the TEACCH conceptual
framework, the Culture of Autism, to be.
6. What is your attitude towards the TEACCH conceptual model, the Culture of
Autism?
7. Explain why you agree or disagree with the following statement:
Because the organically based problems that define autism are not reversible, we do not take "being normal" as the goal of our educational and therapeutic efforts. Rather, the long-term goal of the TEACCH programme is for the student with autism to fit as well as possible into our society as an adult. We achieve this goal by respecting the differences that the autism creates within each student, and working within his or her culture to teach the skills needed to function within our society. (Mesibov & Shea, 1998, p. 1)
8. What positive experiences with TEACCH have you had that have affected
your attitude towards their conceptual model, the Culture of Autism?
9. What negative experiences with TEACCH have you had that have affected
your attitude towards their conceptual model? 74
10. Describe your long-term goal for your child. What do you hope to accomplish
through the TEACCH interventions?
11. Do you have any other comments regarding the TEACCH program or their
conceptual model that you feel would be beneficial for this study?
Data Analysis
The data analysis included all three types of analytic options, including memos, categorizing strategies, and connecting strategies (Maxwell, 2005). Those options were incorporated throughout the six steps of Auerbach and Silverstein's (2003) coding method. The six steps were organized into three phases: making the text manageable, hearing what was said, and developing the theory. During the first phase, the researcher was focused on filtering the text by first revisiting the research problem and theoretical framework of the study. As the electronic questionnaires were completed, they were read individually while notes or memos were taken in order to develop tentative ideas about categories (Maxwell, 2005). The next step was to identify the "significant statement" sentences (Kalash, 2009, p. xii). Those statements, also known as relevant text, were defined as text related to the specific research concerns (Auerbach & Silverstain, 2003).
In the second phase, the researcher focused on the participant's experiences by organizing the relevant text into repeating ideas and then general themes. The repeating ideas occur when the participants use the same or similar words or phrases to express their ideas. Those repeating ideas were formed into themes. According to Auerbach and
Silverstein (2003), "a theme is an implicit topic that organizes a group of repeating ideas"
(p. 38). The categories were substantive in nature, meaning that they were primarily descriptive. According to Maxwell (2005), substantive categories include descriptions of 75 participants' concepts and beliefs. Substantive categories are necessary because the participants' ideas may not fit into existing categories. This process is similar to that of
Gresham (2010) where parental concerns of redistricting were examined through interviewing parents and identifying nine themes based on their answers. Additionally,
Spencer (2009) examined a principal's attitude, perspective, and philosophy regarding male teachers by assigning codes. While reading the questionnaires, reoccurring themes or issues were noted, which then became the categories. The third phase occurred as the researcher worked on an abstract level to group the themes into theoretical constructs and then a theoretical narrative. The themes were grouped into theoretical constructs in order to make them more consistent with the theoretical framework. The theoretical construct is
"an abstract concept that organizes a group of themes by fitting them into a theoretical framework" (Auerbach & Silverstein, 2003, p. 67). By doing this, according to Auerbach and Silverstein, the researcher is able to understand the themes and see how they are connected to the overall theoretical framework.
The final step of analysis was to interpret the data. In the sixth step, the researcher created the theoretical narrative by retelling the participant's story. This occurred by making a list of key points or important findings after categorizing the data; identifying quotes or examples of the key points was helpful (Taylor-Powell & Renner, 2003).
According to Auerbach and Silverstein (2003), the theoretical narrative "uses the theoretical constructs to organize people's subjective experience into a coherent story. It employs people's own language to make their story vivid and real" (p. 73). The researcher examined the overall statements as being positive, negative, or mixed.
Additionally, the researcher used connecting strategies in order to find relationships between the parents' attitudes and their prior experiences with TEACCH (Maxwell,
2005). The researcher also made connections between the data analysis and the research problem. This incorporated progressive focusing by first looking at the specific parent attitudes and then broadening the focus to the broader experiences (Wolcott, 1994).
Summary
This narrative case study was based on a similar phenomenological study conducted by Kalash (2009). The coding methods were based on Auerbach and
Silverstein's (2003) six steps. The purpose of this study was to determine the attitudes of parents of young children with autism towards the TEACCH conceptual model, known as the Culture of Autism. Using an electronic questionnaire, this study was expected to elicit responses from five parents of children with autism regarding their experiences and attitudes towards the TEACCH conceptual model. Their responses were to be categorized or coded based on "significant statements" in order to determine parent attitudes. The relevant text was to be grouped into repeating ideas and themes, which were then re grouped into theoretical constructs. The categories were to be summarized and connections were to be made to the parents' prior experiences in order to develop the theoretical narrative. The data analysis is presented in chapter 4, followed by the summary, conclusions, and recommendations in the final chapter, chapter 5. 77
CHAPTER 4
RESULTS
Historically, parents of children with autism were not involved in the treatment process. At one time in the history of autism study, parents were even blamed for contributing to their child's disorder (Feinstein, 2010). Presently, there are several intervention programs that encourage the involvement of parents. One program in particular, the Treatment and Education of Autistic and related Communication
Handicapped Children (TEACCH) Program, was founded in order to provide support for parents of children with autism (Mesibov et al., 2004). TEACCH is based on three fundamental educational principles: ongoing assessment, using strengths and interests, and family collaboration. Studies have shown that involving parents in the treatment process helps people with autism to lead more productive and independent lives
(Mesibov et al., 2004). However, TEACCH may not be as effective with the child if the parent's philosophical views differ from that of the TEACCH program. According to
Hausler (1998), treatment is only useful if the consumer accepts it. Therefore, if the parent is not accepting of the TEACCH conceptual model, the program may not be as effective as it could be otherwise. Differing views between the parent and the TEACCH interventionist may have a negative affect on the treatment outcome. Seligman and
Darling (2007) explained that parents' ideological style, including their experiences and beliefs, may affect their approach to the services. If the parents and the TEACCH interventionists differ in their etiological beliefs, they could have greatly different expectations regarding the child's ability and progress (Hausler, 1998). Because of this and because the professional's goal is to meet the needs of the family, it is necessary for the professionals to be aware of the parents' perceptions and expectations (Seligman &
Darling, 2007).
The purpose of this study was to identify and explore the attitudes of parents of young children with autism towards the TEACCH conceptual model, known as the
Culture of Autism. The TEACCH techniques and methods are based on its conceptual model, or philosophy. In order to identify the parents' attitudes towards that philosophy, it was decided to implement an electronic email questionnaire to three parents of young children with autism who had had some experience with the TEACCH program. The data were analyzed, using a narrative case study approach. Chapter 5 of the study will present the findings of the study and discuss the findings in reference to the literature.
Participants
The researcher sought to identify three to five parents of preschool children with autism who had some experience with the TEACCH program. Experience was defined as the child being a part of the TEACCH program for some length of time, whether in a school, home, or private intervention setting. In order to identify the participants, the researcher placed an advertisement for the study for one month on the research webpage of the Autism Speaks organization. Parents interested in participating in the study were asked to contact the researcher. Six parents contacted the researcher; however, three of those parents had no prior experience or knowledge regarding the TEACCH program. Of the remaining three participants, only one was the parent of a child with autism in preschool. The other two were parents of young children with autism. At this point, it was 79 determined that the study would focus on the parents of young children with autism rather than parents of preschool children with autism. Upon receiving contact from each parent, the researcher obtained consent by either emailing or mailing the consent form to the participant. After receiving the signed consent forms, the researcher emailed the electronic questionnaire for the participant to complete and return within 2 weeks. The first four questions of the questionnaire were used to ensure that the participant qualified for the study. As mentioned previously, three of the parents did not qualify. Since the participants were anonymous, the ethnicity, socioeconomic status, and geographical location were unknown. From this point forward, the participants will be known as
Participant A, Participant B, and Participant C. Participant A was the mother of a 4-year old son. Participant B was the father of a 6-year-old son. Participant C was the mother of a 7-year-old son.
Results of Data Analysis
After concluding the data collection process, the researcher began to analyze the
data using three types of analytic options, including memos, categorizing strategies, and
connecting strategies, along with Auerbach and Silverstein's (2003) coding methods. The
coding process was broken into three phases: making the text manageable, hearing what
was said, and developing the theory. In order to make the text manageable, the researcher
first revisited the research problem and theoretical framework. Next, the researcher read
the transcribed data, took memos, and identified the relevant text. In the next phase, the
researcher focused on the participants' responses by identifying repeating ideas and
organizing those ideas into general themes. Finally, the third phase allowed the researcher 80 to develop the theory by grouping the themes into theoretical constructs and then developing a theoretical narrative.
Interview Questions
The first four close-ended questions were included to ensure that the participants were qualified to participate in the study. The remaining seven open-ended questions allowed the researcher to have a better understanding of the parents' attitudes and perspectives. Throughout the responses, which follow, the child's name was changed to ensure confidentiality.
In your own words, please describe what you view the TEACCH conceptual framework, the Culture of Autism, to be.
Participant A: To accept the child with their differences, as they are and work with those unique qualities to help them learn. (Rather than change or eliminate them, so to speak.)
Participant B: Teaching an autistic child to progress to eventually be able to better cope and get along in life as an adult.
Participant C: TEACCH uses a very structured style of teaching and promotes independence. It involves the use of pictures (picture schedule, visual reinforcements) and encourages the child to learn to the best of their ability with autism.
What is your attitude towards the TEACCH conceptual model, the Culture of Autism?
Participant A: My attitude towards the TEACCH model is favorable. I feel that it was excellent for my son, and has helped him greatly improve his communication. He is a visual learner, and this style of learning clicked for him.
Participant B: I am open towards anything.
Participant C: I can see where it would be beneficial for autistic children. Structure and visual prompts/reinforcement are things that I use daily to help my child cope, learn, and manage. 81
Explain why you agree or disagree with the following statement:
Because the organically based problems that define autism are not reversible, we do not take "being normal" as the goal of our educational and therapeutic efforts. Rather, the long-term goal of the TEACCH programme is for the student with autism to fit as well as possible into our society as an adult. We achieve this goal by respecting the differences that the autism creates within each student, and working within his or her culture to teach the skills needed to function within our society (Mesibov & Shea, 1998, p. 1).
Participant A: I agree. My son will never be normal, but I no longer desire that. Instead we are focused on helping him interact with others, and strive towards an independent, fulfilling life.
Participant B: I agree. I want to make sure my son is self-sufficient in life.
Participant C: I agree with the statement. I do not believe that autism can be cured. I think that the symptoms of autism can sometimes diminish, but overall, I think its important to teach autistic children how to learn, live, and thrive as much as possible with autism rather than focus on curing it.
What positive experiences with TEACCH have you had that have affected your attitude towards their conceptual model, the Culture of Autism?
Participant A: Seeing John respond to visual schedules and understand/express himself with the visual cards gave me a lot of hope that he is capable of more than I could imagine. John really likes seeing the words printed on the cards (with or without pictures) and has really enjoyed learning to say them and to read. He also likes the predictability of moving through stations, and having somewhat of a routine.
Participant B: My son has progressed. -Potty training. -Talking. -Etc.
Participant C: I have found that structure, schedules, and visual reinforcement work very well for my child. We use picture schedules, social stories, and picture charts daily. I was first introduced to these concepts through his school and TEACCH.
What negative experiences with TEACCH have you had that have affected your attitude towards their conceptual model?
Participant A: John is on the verge of mainstreaming with regular kids.... he still needs some supports in place to make the transition more smooth, i.e., the inclusion classroom should have some aspects of the classroom structure in place. 82
Participant B: N/A
Participant C: (No answer)
Describe your long-term goal for your child. What do you hope to accomplish through the TEACCH interventions?
Participant A: Our long-term goal for John is to be able to interact with others, and be as independent, happy and hopefully as productive as possible, quirkiness and all.
Participant B: I call this my "Exit Strategy" in this world. When I am dead and gone I want to know my son is able to make it through life and be a "citizen" in the community.
Participant C: I want my child to thrive, be independent, successful, and happy. I am hopeful that because of programs like TEACCH he will be able to accomplish all these things and more regardless of autism.
Do you have any other comments regarding the TEACCH program or their conceptual model that you feel would be beneficial for this study?
Participant A: I think that you should strive toward having some type of reverse inclusion or plan for opportunities for children who are mildly, to moderately impaired to be around other child's who are "normal". This is a benefit for both types of children. I also believe that in stations, the learning opportunities should frequently be fresh and novel, as often as possible, to encourage more critical thinking and problem solving.
Participant B: N/A
Participant C: (No answer)
Phase 1: Making the Text Manageable
Research Problem and Theoretical Framework
Before reviewing the data analysis, it was necessary to revisit the study's research problem and theoretical framework. This step was the first of Phase 1 in Auerbach and
Silverstein's (2003) coding method. As mentioned previously, there are studies that have shown involving parents in the treatment process has helped people with autism to lead more productive and independent lives (Mesibov et al., 2004). However, those same programs may not have been effective if the parents' personal philosophy differed from that of the treatment program. Seligman and Darling (2007) explained that parents' ideological style may affect their approach to the services. If the parent and the professional have differing beliefs, they may also have differing expectations for the treatment outcome. Therefore, it is necessary for the professional to be aware of the parents' beliefs (Seligman & Darling, 2007). TEACCH interventionists should be aware of parents' beliefs and attitudes regarding the TEACCH conceptual model in order to ensure that the program will be most effective.
The methods and techniques of the TEACCH program are based on its conceptual model, known as the Culture of Autism. In the following quote, Mesibov and Shea
(1998) describe the Culture of Autism and outline two concepts that the researcher found to be basic TEACCH principles: acceptance of differences and focusing on the child's strengths.
Because the organically-based problems that define autism are not reversible, we do not take "being normal" as the goal of our educational and therapeutic efforts. Rather, the long-term goal of the TEACCH programme is for the student with autism to fit as well as possible into our society as an adult. We achieve this goal by respecting the differences that the autism creates within each student, and working within his or her culture to teach the skills needed to function within our society, (p. 1)
Advocates of the disability theory also focus on those same concepts. They argue that individuals with disabilities should be respected for their differences (Mulvany,
2000), which is almost identical to TEACCH's goal of respecting the differences that autism creates in each child (Mesibov & Shea, 1998). Disability theorists choose to focus on the ways in which individuals with disabilities can contribute to society and the positive values that individuals with disabilities possess (Siebers, 2008). These concepts 84 align with the TEACCH concepts of setting appropriate goals by focusing on the individual's strengths.
Relevant Text
After revisiting the research problem and theoretical framework, the researcher continued Phase 1 of the data analysis process, in other words, making the text manageable. According to Auerbach and Silverstein (2003), the second step in that phase is to identify the relevant text. The researcher began by reading each answered question individually while highlighting text that related to the research questions or seemed to be
relevant to the study. While doing this, the researcher also took notes, or memos, in order to develop tentative ideas about themes (Maxwell, 2005). The researcher also chose to note a description of the statement and to see if the statement was determined to be positive, negative, or mixed (Myers et al., 2009). In Table 1, the researcher identified nine relevant statements for Participant A. In Table 2, the researcher shows the five relevant statements identified by Participant B, and in Table 3, the researcher lists the eight
relevant statements given by Participant C. The relevant text in each table is stated in
each participant's own words. Tables 1, 2 and 3 conclude Phase 1 of the coding process. 85
Table 1
Phase 1: Relevant Text for Participant A
Relevant Text Memo
To accept the child with their differences, Positive: Parent is accepting that their child as they are and work with those unique is different; similar to TEACCH. qualities to hold them learn.
My attitude towards the TEACCH model Positive: They are happy with the TEACCH is favorable. program.
He is a visual learner, and this style of Positive: Focusing on child's strengths and learning clicked for him. compatibility of program.
My son will never be normal, but I no Positive: Realistic, Acceptance. longer desire that.
Instead, we are focused on helping him Positive: Focused on strengths. The parent interact with others, and strive towards has hopes and dreams for the future. an independent, fulfilling life. Realistic.
Seeing John respond to visual schedules Positive: Focused on strengths; has hope. and understand/express himself with the visual cards gave me a lot of hope.
...he still needs some supports in place Negative: Concern and fear for the future. to make the transition more smooth. Suggested accommodations.
Our long-term goal for John is to be able Positive: Focus is on realistic and to interact with others, and be as appropriate goals and acceptance. Also, independent, happy and hopefully as hope for the future. productive as possible, quirkiness and all.
I think that you should strive toward Mixed: Concern and fear for the future. having some type of reverse inclusion or Focused on solutions. plan for opportunities for children who are mildly, to moderately impaired to be around other children who are "normal." 86
Table 2
Phase 1: Relevant Text for Participant B
Relevant Text Memo
... progress to eventually be able to Positive: Hope for the future. better cope and get along in life as an adult"
I am open towards anything. Positive: Willingness.
I want to make sure my son is self- Mixed: Hope and concern for the future. sufficient in life.
My son has progressed. Potty training Positive: Focusing on strengths. Talking, etc.
When I am dead and gone I want to Mixed: Hope and concern for the future. know my son is able to make it through life and be a "citizen" in the community. 87
Table 3
Phase 1: Relevant Text for Participant C
Relevant Text Memo
It involves the use of pictures (picture Positive: Focusing on strengths. schedule, visual reinforcement) and encourages the child to learn to the best of their ability with autism.
I can see where it would be beneficial Positive: Hope. for autistic children.
Structure and visual Positive: Focus is on solutions. prompts/reinforcement are things that I use daily to help my child cope, learn, and manage.
I do not believe that autism can be Mixed: Acceptance cured.
I think that the symptoms of autism can Positive: Acceptance, focusing on sometimes diminish, but overall, I think strengths, and hope. it's important to teach autistic children how to learn, live, and thrive as much as possible with autism rather than focus on curing it.
I have found that structure, schedules, Positive: Focusing on strengths. and visual reinforcement work very well for my child.
I want my child to thrive, be Positive: Hope independent, successful, and happy.
I am hopeful that because of programs Positive: Hope like TEACCH he will be able to accomplish all these things and more regardless of autism. 88
Phase 2: Hearing What Was Said
Repeating Ideas
Phase 2 of the coding process, focusing on the participant's experiences, began by organizing the relevant text into repeating ideas. According to Auerbach and Silverstein
(2003), repeating ideas are defined as similar words or phrases used by one or more participants to express their ideas. In order to identify repeating text, the researcher began with the first relevant statement identified and compared it to each additional relevant statement to examine similarities. If there were additional similarities, those statements were grouped together. This process was repeated with each additional relevant statement. The researcher organized the relevant text into four categories of repeating ideas:
1. Parent accepts that their child is different. 2. Parent focuses on their child's strengths. 3. Parent has hope for the future. 4. Parent is concerned and fears for the future.
As shown in the following Table 4, each repeating idea was repeated at least four times throughout the three questionnaire responses. The researcher immediately noted that the first two repeating ideas, accepting the child's differences and focusing on their strengths, were ideas commonly connected with both the TEACCH conceptual model and disability theory. Although the final two repeating ideas were not directly connected with the conceptual model or disability theory, the researcher chose to include them for reasons that will be discussed later in this chapter. 89
Table 4
Phase 2: Repeating Ideas
Repeating Idea Participant Supporting Excerpt*
Parent accepts that their child is A To accept the child with their differences, as they are different. and work with those unique qualities that help them learn.
A My son will never be normal, but 1 no longer desire that.
C I do not believe that autism can be cured.
C I think that the symptoms of autism can sometimes diminish, but overall, I think it's important to teach autistic children how to learn, live, and thrive as much as possible with autism rather than focus on curing it.
Parent focuses on their child's A He is a visual learner, and this style of learning strengths. clicked for him.
A Seeing John respond to visual schedules and understand/express himself with the visual cards gave me a lot of hope that he is capable of more than I could imagine.
B My son has progressed. -Potty training. Talking, Etc.
C It involves the use of pictures (picture schedule, visual reinforcement) and encourages the child to learn to the best of their ability with autism. I have found that structure, schedules, and visual reinforcement work very well for my child.
(continued) 90
Table 4 (continued)
Repeating Idea Participant Supporting Excerpt*
Parent has hope for the future. A Instead, we are focused on helping him interact with others, and strive towards an independent, fulfilling life.
A Our long-term goal for John is to be able to interact with others, and be as independent, happy and hopefully as productive as possible, quirkiness and all.
B I want to make sure my son is self-sufficient in life.
B When I am dead and gone I want to know my son is able to make it through life and be a "citizen" in the community.
C I can see where it would be beneficial for autistic children.
I want my child to thrive, be independent, successful, and happy."
I am hopeful that because of programs like TEACCH he will be able to accomplish all these things and more regardless of autism.
Parent is concerned and fears A John is on the verge of mainstreaming with regular for the future. kids.. .he still needs some supports to make the transition more smooth.
A I think that you should strive toward having some type of reverse inclusion or plan for opportunities for children who are mildly, to moderately impaired to be around other children who are "normal."
B I want to make sure my son is self-sufficient in life.
B When I am dead and gone I want to know my son is able to make it through life and be a "citizen" in the community.
Note. "Supporting Excerpt in each participant's own words. 91
General Themes
After organizing the text into repeating ideas, the next step for the researcher was to form the repeating ideas into themes. "A theme is an implicit topic that organizes a group of repeating ideas" (Auerbach & Silverstein, 2003, p. 38). Table 5 depicts this step.
The researcher took the four most repeated ideas and developed the following themes:
Acceptance. Acceptance was the first theme that emerged. This theme was formed by the repeating idea: "Parent accepts that their child is different." In analyzing the results of the questionnaires, it was discovered that two of the three participants made comments that suggested that they had experienced acceptance of their child's condition.
Participant A made two comments regarding her acceptance of her child's differences. At one point, Participant A stated that, "My son will never be normal, but I no longer desire that." Participant C also made two comments suggesting that she had accepted her child's condition, including "I do not believe that autism can be cured."
Perspective. Perspective was the second theme that emerged during the data analysis process. The researcher formed this theme with the repeating idea "Parent focuses on their child's strengths." This theme emerged from the results of all three participants' answers to the questionnaires. Participant A made three comments that suggested that she chose to have a positive, solution-based perspective on her child's future by focusing on her strengths rather than on the problem. For example, after stating that her child would no longer be normal, Participant A went on to state that, "Instead, we are focused on helping him interact with others, and strive towards an independent, fulfilling life." Participant B made one statement regarding perspective by discussing how his son had progressed: "My son has progressed. Potty training. Talking, etc."
Additionally, Participant C made two statements regarding her perspective of her child's 92 condition, including, "I think that the symptoms of autism can sometimes diminish, but overall, I think it's important to teach autistic children how to learn, live, and thrive as much as possible with autism rather than focus on curing it." All three participants' statements suggested that they were choosing to focus on their child's strengths; thus, choosing to have a positive perspective on the child's condition and future.
Hope. The third theme that emerged was hope. This theme was formed from the repeated idea "Parent has hope for the future." Although hope is not a significant idea that the researcher would have identified as defining the Culture of Autism, it was repeated so many times in the data that the researcher determined that it was significant.
It was supported in the data from all three of the participants. Participant A made three statements suggesting that she had hope for her child's future. One such statement was
"Seeing John respond to visual schedules and understand/express himself with the visual cards gave me a lot of hope." Participant B also made three statements that suggested that he had hope for the future. In one statement, Participant B said, "When I am dead and gone I want to know my son is able to make it through life and be a "citizen" in the community." Participant C mentioned hope of her child's future in four separate statements, including "I am hopeful that because of programs like TEACCH he will be able to accomplish all these things and more regardless of autism."
Fear. The final theme that emerged was fear. Similar to hope, fear is not an idea that the researcher would have identified as being related to the Culture of Autism.
Again, this concept arose so many times in the data that the researcher felt it was necessary to include it. Fear, as a theme, was formed from the repeating idea "Parent is concerned and fears for the future." Two of the three participants illustrated this idea. 93
Participant A mentioned ideas regarding fear twice in her responses. By stating that, "he still needs some supports in place to make the transition more smooth," the participant suggested that they had some concern regarding that transition. Participant B also discussed fear or concern for the future twice in his statements, including the statement:
"I want to make sure my son is self-sufficient in life."
Table 5
Phase 2: Themes
Theme Repeating Idea Acceptance Parent accepts that their child is different.
Perspective Parent focuses on their child's strengths.
Hope Parent has hope for the future.
Fear Parent is concerned and fears for the future.
Phase 3: Developing Theory
Theoretical Constructs
In Phase 3, the researcher began to work on an abstract level. To do so, she first grouped the themes into theoretical constructs. According to Auerbach and Silverstein
(2003), a theoretical construct is "an abstract concept that organizes a group of themes by fitting them into a theoretical framework" (p. 67). This step was necessary in order to alter the themes so that they were more consistent with the theoretical framework. This step allowed the researcher to understand the themes in a way that connected them to the overall theory.
The researcher began by reviewing the four themes of acceptance, perspective, hope, and fear, and their supportive statements. The researcher determined that 94 acceptance, perspective, and hope were all positive themes that were suggestive of the parents' positive attitudes towards the TEACCH conceptual model. The final theme, fear, was suggestive of negative attitudes towards the TEACCH conceptual model. Table 6 shows how the themes were categorized into the theoretical constructs.
Table 6
Phase 3: Theoretical Constructs
Theoretical Construct Theme
Positive Attitude Acceptance
Positive Attitude Perspective
Positive Attitude Hope
Negative Attitude Fear
Theoretical Narrative
The final step of the data analysis was the formation of the theoretical narrative, which uses "the theoretical constructs to organize people's subjective experience into a coherent story" (Auerbach & Silverstein, 2003, p. 73). The researcher reviewed both theoretical constructs and identified important findings along with examples of those key points (Taylor-Powell & Renner, 2003). Connecting strategies were implemented to compare the participants' prior experiences and their attitudes. Themes for this theoretical construct included acceptance, perspective, and hope. These themes were repeated throughout the participants' responses to the questionnaire.
Participant A. Participant A responded positively to seven of the nine questions analyzed. The remaining two responses were noted as being negative or mixed. 95
Participant A made several remarks suggesting her acceptance of her child's condition.
By stating, "My son will never be normal, but I no longer desire that," it was suggested that she accepted not only that her son was autistic, but also that autism was not a reversible condition. This view is also held by TEACCH. Mesibov and Shea (1998) illustrated this concept by concluding, "We do not take "being normal" as the goal of our educational and therapeutic efforts" (p.l). The theme of acceptance also is connected with the disability theory, in where the proponents do not wish to change individuals with disabilities, but rather wish to change society's negative views towards individuals with disabilities (Siebers, 2008).
Participant A also exhibited a positive perspective by focusing on strengths in three of her responses. In one statement, it was said, "He is a visual learner, and this style of learning clicked for him." Instead of focusing on the child's weaknesses, the parent chose to focus on the child's abilities and to build on those. After stating that she was aware that her child would never be normal, Participant A went to discuss how she was focused on how to make her child more successful in the future. Choosing this perspective may have allowed Participant A to have a more positive outlook on her situation, as only one of her statements was categorized as being negative. Perspective is a theme also connected with the TEACCH conceptual model and disability theory. The
TEACCH model bases its techniques on the TEACCH conceptual model. One of the values that form the conceptual model is to "look for the best in others" (Mesibov et al.,
2004, p. 14). TEACCH also suggests that interventionists should work "within his or her culture to teach the skills needed to function within our society" (Mesibov & Shea, 1998), p. 1). Instead of continuing to emphasize the problem by focusing on the cause of autism 96 or finding a cure, TEACCH chooses to focus on building upon the individual's strengths in order to encourage success. Similarly, disability theory encourages a positive perspective. However, advocates of this theory actually see the disability as being positive. Instead of viewing the differences as disabilities, disability theorists view them as variations in functioning that should be represented in society. They encourage society to change their perspective regarding people with disabilities (Siebers, 2008).
Participant A made three remarks suggesting that she had hope for the future with this statement: "Seeing John respond to visual schedule and understand/express himself with the visual cards gave me a lot of hope." Although it had already been stated that this participant did not believe that her child could be cured of autism, this statement suggests that she still has hope that the child may have success in the future. Participant A went on to state, "Our long-term goal for John is to be able to interact with others, and be as independent, happy and hopefully productive as possible, quirkiness and all." One may determine that Participant A's ability to alter her perspective to one of focusing on the solution may have allowed her to have hope for the child's future. This is not a value that the researcher would have initially identified as defining the Culture of Autism, it arose so many times throughout the data that is was necessary to include it. However, in examining the participant's remarks regarding hope, the researcher determined that hope was a value that was supported by the TEACCH conceptual model and the disability theory. TEACCH identifies its core goal as assisting the individual with autism in fitting into society by working within the culture to teach the skills needed. This goal does suggest hope for the individual with autism to learn, progress, and live as a member of society. The goal of disability theorists is also to improve the quality of life for individuals with disabilities by declaring that they are valuable members of society, which also suggests hope for the future.
Fear was the final theme that arose in two of the responses by Participant A. Only one of those responses was rated as being negative: "he still needs some supports in place to make the transition more smooth." Both of the comments regarding concern and fear for the future were made in regards to the child's transitioning between schools at the end of the school year. In both comments, Participant A suggested that more support and accommodations should be made in order to make the transition smoother for her child.
Although the participant suggested that the concern was regarding the regular education classroom's ability to incorporate the TEACCH tools, the underlying fear may have been related to her doubt of TEACCH's ability to be effective in the regular education classroom. This theme was the only one repeated by all participants that was unrelated to the TEACCH conceptual model and the disability theory. However, the researcher chose to include it in this discussion because of its repetitious tone in the data.
In examining the data collected from Participant A, it was concluded that she had
a positive attitude towards the TEACCH conceptual model. The participant stated that
she agreed with the philosophy of the Culture of Autism and the themes of acceptance
and having a positive perspective, which were repeated throughout the responses.
Participant A shared several positive experiences that she had with TEACCH— all
related to the child's progress with the program. It was determined that those positive
experiences have led to the participant's positive attitude towards the TEACCH
conceptual model. The only negative experience relayed by Participant A was the
concern related to the child's transitioning to a different school the following year. While 98 this experience did have an impact on Participant A, as seen in the two remarks regarding her concern for more support and accommodations, it did not have an affect on her positive attitudes towards the TEACCH conceptual model.
Participant B. Of the five relevant responses made by Participant B, three were rated as being positive while the other two were rated as mixed. Unlike the other two participants, none of the responses by Participant B suggested that he had accepted his child's condition. However, Participant B did state that he agreed with the TEACCH conceptual model, which suggests that he accepts his child's differences.
One of the responses given by Participant B did relate to perspective. When asked about his positive experiences with TEACCH, Participant B responded with "My son has progressed—potty training, talking, Etc." Participant B was able to see progress in his child's achievement and was able to identify the strengths that his child possessed. This ability to look at the best in others is also valued by the TEACCH conceptual model
(Mesibov et al., 2004). Disability theory also suggests that one should have a positive perspective by choosing to view disabilities in a positive light. Disability theorists celebrate differences in functioning instead of viewing them as disabilities (Siebers,
2008).
The most common theme in the responses by Participant B was focused on hope.
Participant B viewed the TEACCH program as one that allowed the child to "progress to eventually be able to better cope and get along in life as an adult." This summarizes the goal of both TEACCH and disability theorists. The researcher found it interesting that two of the three comments related to hope also suggested some concern regarding the child's fixture. For example, one statement made by Participant B, "When I am dead and 99 gone I want to know my son is able to make it through life and be a "citizen" in the community." While this comment did suggest that Participant B had hope for his child to be successful in the future, it also suggested that Participant B had concern for his child's future after his death.
In reflection of the data collected from Participant B, it was determined that he had a positive attitude towards the TEACCH conceptual model. In addition to stating his agreement with the Culture of Autism, Participant B also made several statements that were rated as positive in regards to TEACCH. Participant B discussed his child's progress as a part of the TEACCH program when asked to describe his positive experiences with TEACCH and answered the question regarding any negative experiences with "N/A," suggesting that he had no negative experiences with TEACCH.
It was determined that his positive experiences, including his child's progress, contributed to Participant B's positive attitudes towards the TEACCH conceptual model.
Participant C. Of the eight responses given by Participant C, all but one was rated as being positive. Two of the statements were related to her acceptance of her child's condition. Very succinctly, Participant C stated that, "I do not believe that autism can be cured." This statement can be compared to the quote given by Mesibov and Shea (1998):
"Because the organically-based problems that define autism are not reversible, we do not take "being normal" as the goal of our educational and therapeutic efforts" (p. 1) and the quote given by Bernier and Gerdts (2010) "to encourage the acceptance of individuals with ASD in the community as they are, without studying them or trying to fix them"
(p. 110). It was determined that Participant C did hold views of acceptance similar to
TEACCH and the disability theory. 100
Four of Participant C's eight responses were related to perspective. The most impressive was the statement: "I think that the symptoms of autism can sometimes diminish, but overall, I think it's important to teach autistic children how to learn, live, and thrive as much as possible with autism rather than focus on curing it." This is the same view held by TEACCH and disability theorists. According to Mesibov, TEACCH tries "to enhance the children's strengths and develop around some of the children's interests, to help them function more comfortable" (Feinstein, 2010, p. 136). Unlike other treatment methods, TEACCH does not focus on teaching normal modes of development and functioning, instead they expand on the differences (Feinstein, 2010). Disability theorists also present a positive perspective—choosing to celebrate differences rather than searching for a cure for disabilities (Bernier & Gerdts, 2010).
As with perspective, four of the responses given by Participant C consisted of themes of hope. One of those comments was that, "I am hopeful that because of programs like TEACCH he will be able to accomplish all these things and more regardless of autism." The goal of TEACCH is to encourage success by working within the culture of autism, as suggested by Participant C. Hope is also suggested in Bernier and Gerdts'
(2010) statement regarding the disability theory: "Their hope is to be accepted as a minority group in need of representation, rather than a disabling condition in need of repair" (p. 110).
Unlike the other participants, Participant C did not make any comments that expressed fear or concerns for the future. Of the eight comments made by Participant C, only one was rated as being mixed while the other seven were positive comments. The researcher determined that Participant C had a positive attitude towards TEACCH 101 through her admittance of agreement with the TEACCH conceptual model and the themes that arose during her responses. Participant C did not answer the question regarding any negative experiences with TEACCH, suggesting that she only had positive experiences with the program. When asked about the positive experiences with
TEACCH, Participant C was the only one to describe the progress made by her child. In addition to the progress, Participant C specified that she found TEACCH's tools and techniques beneficial to her in coping with her child. The tools and techniques were effective. Therefore, it was determined that Participant C had a positive attitude to
TEACCH's conceptual model.
Summary
In this chapter the researcher focused on the data analysis, which overall supported the themes and theoretical constructs of the TEACCH program. Table 6 displays a summary of the themes and theoretical constructs that were developed during the analysis of data. The relevant text was organized in themes: acceptance, perspective, hope, and fear, which were then organized into theoretical constructs of positive attitude and negative attitude. The majority of responses from all three participants were rated as being positive and each participant stated that he/she agreed with the TEACCH conceptual model. Additionally, each participant gave supporting statements that were related to values held by both the TEACCH conceptual model and the disability theory.
While fear is not a value that was connected with TEACCH or the disability theory, it was included in the discussion because of its repetition throughout the responses. By analyzing the responses, the researcher determined that the participants had positive attitudes regarding the TEACCH conceptual model, the Culture of Autism, and that their 102 positive experiences with TEACCH, including their child's progress and the tools that they had gained, had led to that resulting attitude. 103
CHAPTER 5
SUMMARY, CONCLUSIONS, AND RECOMMENDATIONS
The purpose of this research study was to explore the attitudes of parents of young children with autism towards the conceptual model of the Treatment and Education of
Autistic and related Communication Handicapped Children (TEACCH) Program. The researcher utilized a qualitative narrative case study approach in order to answer the research question: What are the attitudes of parents of young children with autism towards the TEACCH conceptual model, the Culture of Autism? The data was viewed through a disability theory lens and analyzed using Auerbach and Silverstein's (2003)
6-step coding process. Previously, the researcher provided an overview of the study and of the history of autism spectrum disorders and treatments, a review of related literature, the methodology of the study, and the data that was collected.
The themes that emerged from the relevant text were as follows: acceptance, perspective, hope, and fear. Those themes were combined into theoretical constructs
(positive attitude and negative attitude) along with a theoretical narrative. This chapter will provide a summary of the study, conclusion, and recommendations.
Overview of Methodology
Three parents of young children with autism spectrum disorders were identified for this study through an advertisement on the Autism Speaks website. Initially, the 104 researcher sought to only include parents of preschool children. However, because only one parent of a preschool child agreed to participate in the study the research committee decided that it would be beneficial to include parents of young children, ages 3 to 7 rather than ages 3 to 5. After consenting to participate in the study, each parent was emailed an electronic questionnaire and was given 2 weeks to complete it.
The researcher analyzed the resulting data from the questionnaires using
Auerbach and Silverstein's (2003) coding methods, which included stating the concerns and the theoretical framework, selecting relevant text, recording the repeating ideas and grouping the related passages, organizing the themes by grouping them into categories, developing theoretical constructs by grouping the themes, and finally, developing a theoretical narrative.
Findings for Research Questions
The primary research question: What are the attitudes of parents of young children with autism towards the TEACCH conceptual model, the Culture of Autism?
The following Table 7 represents the participants' responses pertaining to the primary research question. The table is headed by the theoretical construct and includes the emerging themes as well as the repeated text. The theoretical construct for the research question was a Positive Attitude. This construct emerged through categorizing the themes as suggested by Auerbach and Silverstein (2003). The themes categorized under this construct were acceptance, perspective, and hope. 105
Table 7
Theoretical Constructs, Themes, and Repeating Ideas Related to Addressing Research Question 1
Theoretical Construct Theme Repeated Idea
Positive Attitude towards a.Acceptance Parents accepts child is different TEACCH Conceptual Model b.Perspective Parent focuses on their child's strengths
c.Hope Parent has hope for the future
Negative Attitude towards a.Fear Parent is concerned and fears for TEACCH Conceptual Model the future of the child
The researcher concluded that all three participants had positive attitudes towards the TEACCH conceptual model based on their responses to the research question. Each participant responded in agreement when asked about his and her attitudes towards the
Culture of Autism. Each participant also provided statements related to values held by
TEACCH, suggesting that his or her personal philosophies were similar to the philosophy held by TEACCH.
The following Table 8 displays several statements that were made by the participants along with the themes that were created based on those repeated statements.
It was determined that the attitudes towards the TEACCH conceptual model were ones of agreement. 106
Table 8
Data Pertaining to the Primary Research Question
Theme Participant Excerpt*
Acceptance I agree. My son will never be normal, but I no longer desire that.
I agree. I do not believe that autism can be cured.
Perspective Instead, we are focused on helping him interact with others, and strive towards an independent, fulfilling life.
B My son has progressed.
I think that the symptoms of autism can sometimes diminish, but overall, I think it's important to teach autistic children how to learn, live, and thrive as much as possible with autism rather than focus on curing it.
Hope A Our long-term goal for John is to be able to interact with others, and be as independent, happy and hopefully as productive as possible, quirkiness and all.
B I agree. I want to make sure my son is self-sufficient in life.
I am hopeful that because of programs like TEACCH he will be able to accomplish all these things and more regardless of autism.
Note. *Excerpts include statements made by participants in their own words. 107
Secondary Research Question 1: How do parents of young children with autism interpret the meaning of the Culture of Autism?
This secondary research question was addressed in the fifth interview question. In response to being asked to describe the Culture of Autism, Participant A stated as follows: "To accept the child with their differences, as they are and work with those unique qualities to help them learn. (Rather than change or eliminate them, so to speak.)"
This response describes several components of the Culture of Autism as described by
TEACCH. The first key point that the participant described was the acceptance of the child's differences. TEACCH's conceptual model, the Culture of Autism, is focused on respecting the differences that autism creates in each child (Mesibov & Shea, 1998).
Because TEACCH's methods and techniques are based on its conceptual model, this means that those practices reflect this point as well. TEACCH employs individualized assessments and educational plans in order to meet the individual needs of the child while respecting their different learning styles and characteristics (Mesibov et al., 2004).
Participant A also touched on the point of focusing on the child's unique qualities to help the child learn. The TEACCH conceptual model does support the notion of having a positive perspective by focusing on the child's strengths and "working within his or her culture" (Mesibov & Shea, 2004). One of the values of the TEACCH model is to look for the best in others. TEACCH suggests using the child's strengths, interests, and talents in order to motivate children and to increase their progress (Mesibov et al., 2004).
Participant A also described the Culture of Autism as not working to change or eliminate the child's unique behaviors. Mesibov and Shea (1998) stated that, "the organically-based problems that define autism are not reversible" (p. 1); instead, the goal 108 of TEACCH is to assist individuals with autism in being as successful as possible without changing them or attempting to make them "normal." TEACCH states that they achieve their goal by respecting each child's differences (Mesibov & Shea, 1998).
Through the responses, Participant A demonstrated an interpretation of the
Culture of Autism that noted the acceptance of differences, focusing on strengths, as well as accepting the child's unique behaviors. These components also align with key points described by the disability theory. Advocates of the disability theory promote the acceptance of people with disabilities as they are, with differences and all (Bernier &
Gerdts, 2010). Siebers (2008) explained that disability theorists do not focus on curing the individual with disabilities, as Participant A indicated. Siebers went on to explain that many individuals with disabilities do not see themselves as flawed and do not wish to have their disabilities removed.
When asked to describe the Culture of Autism, Participant B stated that,
"Teaching an autistic child to progress to eventually be able to better cope and get along in life as an adult." This interpretation was a very generalized goal of the TEACCH conceptual model. According to Mesibov and Shea (1998), the long-term goal of TEACH is to assist the individual with autism in fitting into and functioning in society as an adult.
Participant B's statement also aligned with the disability theory, whose proponents suggest that individuals with disabilities can be valuable members of society. Disability theorists suggest that by identifying positively with the disability, individuals with disabilities can lead more productive, lives (Siebers, 2008).
Participant C described the Culture of Autism as involving "the use of pictures
(picture schedule, visual reinforcements) and encourages the child to learn to the best of their ability with autism." This interpretation of the TEACCH conceptual model is reflective of the model itself. TEACCH seeks to provide the individuals with autism with the necessary skills to be successful in society (Mesibov & Shea, 1998). Disability theorists also encourage individuals with disabilities to focus on their positive attributes, including their disabilities, and on how their diversity may contribute to society (Siebers,
2008). Therefore, the opinion of all three study participants regarding the Culture of
Autism is comparable to both TEACCH and the disability theory. Based on the data collected from the three participants, it may be determined that parents who have had experience with the TEACCH program are able to interpret the TEACCH conceptual model in a manner that is in line with the components of the model.
Secondary Research Question 2: To what extent do parents of young children with autism agree or disagree with the TEACCH conceptual model, known as the Culture of Autism?
This secondary research question was addressed mainly in interview questions 6 and 7. Although it is difficult to determine the extent to which the participants agree, it is apparent that they do agree with the basic model. Participant A stated that she had a favorable attitude towards the TEACCH conceptual model while Participant B stated that he had an open perspective. Participant C stated that she found many benefits for the use of TEACCH with children.
When asked if she agreed with the TEACCH conceptual model, Participant A stated, "I agree." Participant A then went on to defend this statement by describing the components of the Culture of Autism that she agreed with. For instance, Participant A explained that she accepts her child's differences and does not want her child to be cured. 110
She described that she focuses instead on assisting the child in gaining skills needed to be successful in society. Those points correspond with principles held by the TEACCH conceptual model. Additionally, those points correspond with principles held by disability theorists. Accepting differences and not hoping for a cure are core beliefs of disability theorists. Therefore, it may be determined that Participant A possesses beliefs that are similar to those held by advocates of the disability theory as well as the TEACCH conceptual model.
Participant B also stated "I agree" and then expanded "I want to make sure my son is self-sufficient in life." This statement suggested that the parent felt that use of the
TEACCH program would enable his child to become self-sufficient. Participant B later stated that, "When I am dead and gone I want to know my son is able to make it through life and be a "citizen" in the community," again suggesting that TEACCH could assist his son in reaching that goal. While Participant B did state that he agreed with the TEACCH conceptual model, he did not provide evidence of specific components of the model that he agreed with. While it is a goal of TEACCH to assist individuals as being as successful as possible in society (Mesibov & Shea, 1998), that does not ensure that the individual will be successful or self-sufficient. Similarly, the disability theory does not address individuals with disabilities becoming self-sufficient. Disability theorists may see the notion of self-sufficiency as a form of oppression created by society. According to
Siebers (2008), disability theorists suggest that individuals with disabilities are discriminated against through the belief that an able body and mind determine who is a
"quality human being" (p. 4). The fact that someone is defined as not being "self- sufficient" would be an act of oppression against that person. Therefore, while the data Ill suggests that Participant B agrees with the Culture of Autism, it also suggests that his beliefs differ from those of disability theorists.
Participant C stated that she agreed with the Culture of Autism. Participant C further explained that, " I do not believe that autism can be cured. I think that the symptoms of autism can sometimes diminish, but overall, I think its important to teach autistic children how to learn, live, and thrive as much as possible with autism rather than focus on curing it." This statement was similar to the one made by Participant A regarding focusing on assisting the child in becoming successful in society rather than on attempting to cure the child of autism. As stated earlier, this idea is supported by the
TEACCH conceptual model as well as the disability theory. All three participants suggested focusing on providing their children with skills necessary to become successful in society. Based on this data, it was determined that all three participants agreed with the
TEACCH conceptual model, the Culture of Autism, in varying degrees.
Secondary Research Question 3: What experiences have the parents had with the
TEACCH program that have affected their attitudes regarding the TEACCH conceptual model, known as the Culture of Autism?
This secondary research question was addressed in questions 8 and 9 of the questionnaire. When asked to describe the positive experiences that had affected their attitude towards TEACCH, Participant A stated that, "Seeing John respond to visual schedules and understand/express himself with the visual cards gave me a lot of hope that he is capable of more than I could imagine. John really likes seeing the words printed on the cards (with or without pictures) and has really enjoyed learning to say them and to read. He also likes the predictability of moving through stations, and having somewhat of a routine."
When relaying their negative experiences that had affected their attitude towards
TEACCH, Participant A stated that, "John is on the verge of mainstreaming with regular kids ... he still needs some supports in place to make the transition more smooth, that is, the inclusion classroom should have some aspects of the classroom structure in place." In this response, Participant A focused on a possible future negative experience rather than a positive experience. Participant A discussed her fear and concerns related to the future of her child's education. The parent suggested that she was concerned with the mainstream classroom's ability to incorporate aspects of TEACCH. This raises the question, if
TEACCH can be used in the mainstream classroom, based on the doubts of Participant A for the future of her child.
Participant A identified her positive experiences as consisting of when John made progress, was interested in an activity, and enjoyed an activity. Incorporating an individual's interests in hopes of the individual enjoying and being motivated to complete an activity is a process suggested by TEACCH. The participant stated her negative experience as concerns and fears for her child's future. In focusing on the progress that
John had made instead of on the deficits of the program, Participant A demonstrated a view held by both the Culture of Autism and the disability theory.
Participant B also focused on his child's progress. When asked about his positive experiences with TEACCH, Participant B stated that, "My son has progressed."
Participant B specified that the child had progressed in both toileting and communication skills. Participant B answered "Not-applicable" when asked to state the negative 113 experiences with TEACCH. The participant instead had decided to focus on the child's progress and strengths. Again, those views are held both by the Culture of Autism as well as disability theory.
Similar to the other two participants, Participant C focused on her child's progress. However, Participant C went on to discuss the tools that TEACCH had provided: "I have found that structure, schedules, and visual reinforcement work very well for my child. We use picture schedules, social stories, and picture charts daily." In reflecting on the statements given by Participant C, the majority of the statements were positive, with only one statement rated as mixed. It may be suggested that Participant C's views of positive experiences included not only with the child's success but with also gaining the use of tools and methods from TEACCH and sees this as a positive contribution, as shown through the responses to the questionnaire.
Based on the data, it may be determined that all three participants had positive experiences with TEACCH that may have contributed to their positive attitudes towards the TEACCH conceptual model. All three participants indicated that they focused on their child's progress. Participant A did express some concern regarding the child's future but Participants B and C indicated no negative experiences with TEACCH.
Limitations
The purpose of this study was to determine the attitudes of parents of young children with autism towards the TEACCH conceptual model. Participants included three parents of young children who were diagnosed with autism spectrum disorders and who had had some experience with the TEACCH program. When interpreting the results of the study, it is important to consider the limitations of the study. Although parents were 114 asked to answer the questions openly and honestly, there is no way to determine that they did so. The results may have been skewed if the participants did not answer the questions truthfully. Reactivity may have occurred by the participants answering the questions in a manner in which they thought would please the researcher. In order to prevent this, the questionnaire was conducted electronically and the questions were phrased in such a way as not to lead the participants. Additionally, the researcher's own personal experiences with TEACCH and beliefs may have contributed to their biases as well. The small number of participants used in this study may have contributed to it not representative of all parents of young children with autism spectrum disorders.
An additional limitation of the study may be due to the sample not being representative of the population of parents of young children with autism spectrum disorders. This study implemented an electronic questionnaire and was advertised on the
Autism Speaks website. It may be suggested that the parents who agreed to participate in the study were more active in the autism community and were of higher socioeconomic status. Those factors may influence their personal ideological status as well as their knowledge regarding the TEACCH conceptual model.
Conclusions
The purpose of this study was to explore the attitudes of parents of young children with autism towards the TEACCH conceptual model, the Culture of Autism. This theoretical model drives the TEACCH practices and is based on the ideas that autism is not reversible and that individuals with autism should be respected for their differences.
The goal of TEACCH, as outlined by its conceptual model, includes assisting the individual with autism to fit as best possible into society by respecting their differences 115 and working with them to develop the necessary skills to function successfully (Mesibov
& Shea, 2004). This intervention method is very different from many other popular methods that focus on teaching normal modes of functioning and development (Feinstein,
2010).
According to Hausler (1998), treatment is only useful if the consumer, in this case, the parent, accepts it. Therefore, it is important to understand the parents' attitudes towards the TEACCH conceptual model in order to determine their acceptance of it as a method of treatment. Based on the data collected in this study, the researcher determined that all three participants agreed with the TEACCH conceptual model and, therefore, were accepting of it as a form of treatment for autism.
There are many factors that may have contributed to the positive attitudes of the participants. Two of the three participants described accepting their child's autism without expecting a cure for their child. Pullen (2008) found that through acceptance of their child, parents are better able to be helpful to the child. The parents' ability to accept their child's condition can also have an impact on the parents' interaction with the interventionist. Acceptance of the children's disability as well as their abilities will affect the parents' expectations for the child. According to Mulick and Butter (2002), differences in expectation between the parents and the interventionists may affect their interactions. Because Participant A and Participant C were accepting of their child's condition, it was assumed that they had appropriate expectations for their child, which would be similar to those expectations held by TEACCH interventionists.
All three participants discussed having a positive perspective by focusing on strengths of their children or areas in which their children had succeeded. Hausler (1998) 116 had previously discussed that while parents of children with autism had higher stress and psychological problems, they also appreciated their child for who they were and how they had enriched their lives. A 2009 study by Kratz et al. revealed that parents found positive aspects even when encountering challenges. This was also shown in Myers, Mackintosh, and Goin-Kochel's (2009) study in which nine positive themes emerged. In the current study, three of the four emerging themes were rated as being "positive."
The three study participants also indicated that they had hope for their children's future. In some way or another, they all commented that they hoped that their child would be successful in fitting into society. Two of the three participants mentioned their children as being successful while still having autistic differences. Yura (1983) concluded that passive attitudes from parents regarding expectations for their children might negatively affect their role as change agents. Each of the three participants in the current study described future goals for their children, suggesting that they embraced their role as a change agent in their child's life.
All three participants described positive experiences that they had with TEACCH.
All three participants described their children's progress as being a positive experience and Participant C also added that the skills she had learned from TEACCH were positive and useful. Therefore, in addition to acceptance of their child's condition, having a positive perspective, and having hope contributing to the parents' positive attitudes towards the Culture of Autism, the participants' positive experiences were deemed as contributing factors. 117
Recommendations
This study sought to examine the attitudes of parents of young children with autism towards the TEACCH conceptual model. The results of this study have implications for both professionals and parents of young children with autism.
Additionally, through the course of this study, several areas for future research have emerged.
Recommendations for Professionals
According to Hausler (1998), if the parents' beliefs differ greatly from the professionals, then their professional relationship could be negatively affected. Different beliefs may lead to different expectations of the outcome of treatment services. It is necessary for professionals to be aware of the parents' ideological style, including their history, beliefs, values, and coping behaviors (Seligman & Darling, 2007). Awareness of their ideological style will allow the professional to determine if their philosophies are compatible. Open communication is necessary in order for this to take place.
Seligman and Darling (2007) stated that a professional's purpose was to assist the families in achieving their goals for their disabled children. In order to meet this purpose, the professional must be aware of those goals. Again, communication and allowing the family to feel comfortable in honestly sharing their thoughts is necessary in achieving this. TEACCH identified several values that are necessary when working with families, including respecting the individuality of the family, allowing the family's priorities to guide the work, and conducting the work at a tempo that the family is comfortable with
(Mesibov et al., 2004). 118
Recommendations for Parents of Young Children with Autism
According to TEACCH, parent involvement in the treatment process can help individuals with autism lead more productive and independent lives (Mesibov et ah,
2004). Because of the possibility of improved treatments, it is necessary for parents to take an active role in their child's treatment process. This may include being informed about the philosophy behind the treatment and participating in the intervention techniques and methods. Haulser (1998) found that treatment is only useful if the consumer accepts it. Therefore, it is necessary for the parents' personal beliefs to align with those of the treatment program. Again, parents should be informed of the philosophy that the treatment program is based on. That awareness will allow the parent to determine if that is the best treatment program for their family. The parents' ideological style—including their history, beliefs, values, and coping behaviors—may affect their approach to services
(Seligman & Darling, 2007). It is imperative that parents be aware of their personal ideological style in order to determine if it is compatible with the treatment style. For example, if a parent believes that autism is curable, then their ideological style would not be compatible with the TEACCH conceptual model, which views autism as non-reversible (Mesibov & Shea, 1998). 119
Recommendations for Research
Continued research is needed regarding parent attitudes towards intervention programs, including TEACCH. As stated in the limitations section, there is a possibility that the small number of participants in this study caused the results to be not representative of all parents of young children with autism spectrum disorders. Future research should include a larger number of participants, which would allow researchers to compare the results of this study to a larger scale study. Additionally, expanding the research to include parents of older children or adults would be beneficial to this field of research. The researcher was unable to uncover longitudinal studies related to the change in parents' attitudes or beliefs over time, suggesting a need for a well-designed longitudinal study in order to examine how parents' attitudes and beliefs change over time.
It is also necessary to repeat this study in order to understand parent attitudes not just specific to TEACCH but to other intervention programs as well. For example, exploring the attitudes of parents of young children with autism towards the theoretical underpinnings of Applied Behavioral Analysis (ABA) would also be pertinent to the field of autism research.
Finally, comparative studies focused on exploring parents' attitudes towards both
TEACCH and ABA philosophies would be beneficial. In doing so, researchers would be able to examine if parents' attitudes were more in line with the philosophy behind
TEACCH or ABA. This research in particular may aid parents in determining which intervention programs would be more effective for their families based on their personal beliefs. 120
Closing Statement
The purpose of this narrative case study was to explore the attitudes of parents of young children with autism towards the TEACCH conceptual model, the Culture of
Autism. This study used a qualitative case study approach utilizing an electronic questionnaire that was given to three parents of young children with autism, ages 3 to 7.
The researcher categorized the repeating ideas into four thematic categories: acceptance, perspective, hope, and fear. The data suggested that all three study participants had positive attitudes towards the TEACCH conceptual model. This conclusion was supported by the acceptance, perspective, and hope themes that emerged. The data also suggested that all three participants had positive experiences with the TEACCH program, but one participant stated a negative concern. The researcher concluded that the positive experiences of the participants with the TEACCH program resulted in positive attitudes towards the Culture of Autism. 121
APPENDIX A
INTERVIEW QUESTIONS
1. Does your child have a diagnosis of Autism Spectrum Disorder (ASD) given by a
licensed psychiatrist?
2. Is your child between the ages of 3 and 7?
3. In your personal opinion, what is the cause of Autism Spectrum Disorders
(ASD)?
4. Have you had experience with the Treatment and Education of Autistic and other
Communication Handicapped Children (TEACCH) program?
5. Are you familiar with the conceptual model, or philosophy, of the TEACCH
program, known as the Culture of Autism?
6. In your own words, please describe what you view the TEACCH conceptual
framework, the Culture of Autism, to be.
7. What is your attitude towards the TEACCH conceptual model, the Culture of
Autism?
8. Explain why you agree or disagree with the following statement:
Because the organically based problems that define autism are not reversible, we do not take "being normal" as the goal of our educational and therapeutic efforts. Rather, the long-term goal of the TEACCH programme is for the student with autism to fit as well as possible into our society as an adult. We achieve this goal by respecting the differences that the autism creates within each student, and working within his or her culture to teach the skills needed to function within our society. (Mesibov & Shea, 1998, p. 1)
9. What positive experiences with TEACCH have you had that have affected your
attitude towards their conceptual model, the Culture of Autism? 10. What negative experiences with TEACCH have you had that have affected your
attitude towards their conceptual model?
11. Describe your long-term goal for your child. What do you hope to accomplish
through the TEACCH interventions?
12. Do you have any other comments regarding the TEACCH program or their
conceptual model that you feel would be beneficial for this study? 123
APPENDIX B
INSTITUTIONAL REVIEW BOARD APPROVAL LETTER
20-Mar-2012
Natalie Rowetl Titt College of Education Macon. O* 31207-0001
RE: Exploring the Atfltudeiof A»r»nt»of Preichool 9udentewith Auti*n towardttheTEAOCH Conceptual Modal: A Narrative Caw 3udy (HI203002
Dear Powell:
Vbur application entitled: Exploring the Attitudaeof ferentsof Preschool 9udentswith Autism towards the TEA0CH Conceptual Model: A Narrative Case Study (HI 203092 waereviewed by this Institutional Review Board for Human Subjects Research in accordance with Federal Ftegutalions21 CSH56.110 Vbur Explication wascpproved for one year of study on 20-Mar-2012 H*s protocolexpireel 9-Mar-2013 If the study continues beyond one /ear. it must be reevaluatedby the IRB Committee Hem(4 Approved: New Application Pleas complete the survey tor the IRBand the Office of ffeaarch Compliance. To accesthe survey, ctick on the faI lowing liflk: nip • ^ » ; :ivtr\n ;mq < iHti Sujyr*- /| r-B Respectfully. AvaChamblRB-Richardflon. fvlED OP. CIM Merrier Intuitional Riview Board Me rcer Unrversty IR8& Office of FfesBarch Compliance Phona (478)301-4101 fta (478)301-2329 OfC_Mercer@ Mercer Edu i.Mitvxt *4V "•» onati <4 "»l HH 410I • (AX <4**1 MJi 124 APPENDIX C PARENT INFORMED CONSENT FORM TIFT COLLEGE Of EDUCATION Informed Consent Exploring the Attitudes of Parent* of Preschool Children with Autism Towards the THACCH Conceptual Model: A Narrative Study You »e being asked to participate in a research study. Before you give your consent to volunteer, it is important that you read the following information and ask as many questions as accessary to be sure you understand wfeat you will be asked to do. £0250E^BBSSI Nub L. Powell, M_Ed., Doctoral Candidate Mercer University Tift College of Education 1400 Coleman Avenue Macoa, Georgia 31207 (471) 301-5397 Albeit A. SonmieEto. Ed. D., Faculty Advisor Vlercer University Tift College of Education 1400 Coleman Avenue Macon. Georgia 31207 ;47t)30l-26tt Purpose of the Research Tlsts research study is designed to examine the attitudes of parents of preschool children with autism towards the conceptual model of the Treatment and Education of Autistic and other Communication Handicapped Children (TEACCH) program. The data from this research will be used to enltgiiitea TEACCH interventionists and other professionals about the attitudes, feelings, and needs of parents of young children with autism. It is hoped thai this will allow those professionals io bettw meet the needs of those parents, thus litewing them to make greater progress when working with the child and families. es If you volunteer to participate in this study, you will be asked to complete a short, structured, open and close-ended electronic questionnaire regarding your attitudes and experiences with the TEACCH conceptual model Your participation will take approximately an hour The electronic questionnaire will take you approximately thirty minutes to complete. You will be allowed two weeks to complete the I MO Colcnw .Wiw • Mxon, GA J1207-0001 H?*} J01 * (-»?#> JOt-2V2 or (-178) 301-2*71 • FAX (4?8) J0I-54I6 Pataulid! Risks or Ducomforts There ate no foreseeable risks associated with the study. In order to mature any time tnconvetitencca, the questionnaire will be given electronically so that the participant is able to complete it at a tune ia which they have no distraction and ample time to devote. Participants will be allowed to complete the questionnaire over a two-week period. The participant has die rtjht to discontinue participation at my time, either temporarily or permanently. There are no foreseeable benefits for the participants in this study. It is hoped that the data collected through this study will enable profession*!! working with families of children with autum to better understand the parents' attitudes and needs, This woukl potentially allow those profetisonaU to make further progress with the chitdim with autism. All results of the electronic queetkmnelm will be completed anonymously so that participant's name* will not be used. All data will be stored in a secure location. Only the member* of the research committee will have access to the data The data will be stored at Mercer University for at least 3 yean after the completion of the study. Pamctpanon ami Withdraws! Yotar participator! in this research study is voluntary. As a participant you may rcfasc to participate at anytime To withdraw from the study please contact Natalie Powell and state your wish to withdraw. Natalie Powell, M.Ed. Mercer University Tift College of Education 147!) 301- 5397 If you have my questions about the research, please speak with Natalie Powell or Albert Seranuello. Natalie L. Powell, M.Ed., Doctoral Candidate Mercer University Tift College of Education 1400 Coleman Avenue Macoo, Georgi* 31207 (471)301-5397 Albert A, Scrannel Jo, Ed D, Faculty Adviser Mercer University Tift College of Education 1400 Coleman Avenue Macon, Georgia 31207 (47*) J01-26S8 126 REFERENCES American Psychiatric Association. (2010). DSM-5 development. Retrieved from http://dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94# Arizona State Department of Education. (2007). Transition: From home or early intervention services to preschool special needs. Phoenix, AZ: Arizona Dept. of Education. Auerbach, C. F., & Silverstein, L. B. (2003). An introduction to coding and analysis: Qualitative data. New York, NY: New York University Press. Bailey, D. B. (2001). Evaluating parent involvement and family support in early intervention and preschool programs. Journal of Early Intervention, 24( 1). 1-14. Baird, S., & Peterson, J. (1997). Seeking a comfortable fit between family-centered philosophy and infant-parent interaction in early intervention: Time for a paradigm shift? Topics in Early Childhood Special Education, 17(2), 139-164. Barnes, C., & Mercer, G. (2001). Disability culture: Assimilation or inclusion? Handbook of Disability Studies. Thousand Oaks, CA: Sage Publications. Bellin, M. H., Osteen, P., Heffernan, C., Levy, J. M., & Snyder-Vogel, M. E. (2011). Parents and health care professional perspectives on family-centered care for children with special health care needs: Are we on the same page? Health and Social Work, 36 (4), 281-290. Bernier, R., & Gerdts, J. (2010). Autism spectrum disorders: A reference handbook. Santa Barbara, CA: ABC-CLIO, LLC. Bockmiller, P. E. (1994). The critical need for teachers and preschoolers with special needs and their families: Southern University's response. Education, 115( 1), 105. Boyd, B. A., Odom, S. L., Humphreys, B. P., & Sam, A. M. (2010). Infants and toddlers with autism spectrum disorder: Early identification and early intervention. Journal of Early Intervention, 32(2), 75-98. Bristol, M. M., Gallagher, J. J., & Schopler, E. (1988). Mothers and fathers of young developmentally disabled and nondisabled boys: Adaptation and spousal support. Developmental Psychology, (24)3, 441-451. Buckley, K. P. (1994). Parent's views on education for the gifted. Roeper Review, 16(3), 215-216. doi:10.1080/02783199409553578 127 Busch, E. C. (2009). Using acceptance and commitment therapy with parents of children with autism: The application of a theory. Available from ProQuest Dissertations and Theses. (UMI No. 3388329) Carbone, P. S., Behl, D. D., Azor, V., & Murphy, N. A. (2010). The medical home for children with autism spectrum disorders: Parent and pediatrician perspectives. Journal of Autism and Developmental Disorders, 40, 317-324. Centers for Disease Control and Prevention. (2010, May 13). ASD fact sheet. Retrieved from http://www.cdc.gov/ncbddd/autism/facts.html Chambliss, C., & Doughty, R. J. (1994). Parental response to Lovaas treatment of childhood autism. Scranton, PA: Annual University of Scranton Psychology Conference. Clark, M. M. (1987). Early education and children with special needs. Journal of Child Psychology & Psychiatry & Allied Disciplines, 28(3), 417-425. Clark, M. M., Robson, B., & Browning, M. (1982). Pre-school education and children with special needs. London, UK: Birmingham University. Cohen, S. (2011). [Commentary on] Providing services to students with autism spectrum disorders. Journal of Visual Impairment & Blindness, 105(6), 325-329. Committee on Educational Interventions for Children with Autism, (2001). Educating children with autism. Washington, DC: National Academies Press. Cooper, J. O. (1982). Applied behavior analysis in education. Theory into Practice, 21(2), 114-118. Creswell, J. W. (2007). Qualitative inquiry & research design: Choosing among five approaches. Thousand Oaks, CA: Sage. Dardennes, R. M., A1 Anbar, N. N., Prado-Netto, A., Kaye, K., Contejean, Y., & A1 Anbar, N. N. (2011). Treating the cause of illness rather than the symptoms: Parental causal beliefs and treatment choices in autism spectrum disorder. Research in Developmental Disabilities, 32(3), 1137-1146. Denzin, N. K. & Lincoln, Y. S. (2005). The Sage handbook of qualitative research (3rd ed.). Thousand Oaks, CA: Sage. Dwinell, P. L. (1977). Parent education for gifted pre-schoolers. Gifted Child Quarterly, 18(2), 191-195. 128 Eikeseth, S. (2009) Outcome of comprehensive psycho-educational interventions for young children with autism. Research in Developmental Disabilities, J0(1), 158- 178. Feinstein, A. (2010). A history of Autism: Conversations with the pioneers. Maiden, MA: Blackwell. Fisher, W. W., Piazza, C. C., & Roane, H. S. (2011). Handbook of applied behavior analysis. New York, NY: Guilford Press. Fong, L., Wilgosh, L., & Sobsey, R. (1993). The experience of parenting an adolescent with autism. International Journal Of Disability, Development, And Education, 40(2), 105-113. Gabel, S. (2009). Disability studies in education: Readings in theory and method. New York, NY: Peter Lang Publishing. Gerlach, E. (2002). Informing, empowering, and keeping parents involved, Part I. The beginning: How parents move forward and make choices after diagnosis. Exceptional Parent, 32(6), 105-109. Gillham, B. (2000). Case study research methods. London, UK: Continuum. Goin-Kochel, R. P., & Myers, B. J. (2005). Congenital versus regressive onset of autism spectrum disorders: Parents' beliefs about causes. Focus on Autism & Other Developmental Disabilities, 20(3), 169-179. Gresham, R. J. (2010). A study of parent perceptions of schools before and after redistricting and implications for school leaders. Available from ProQuest Dissertations and Theses. (UMI No. 3420120) Harms, T., & Smith, J. (1975). Changes in parent/teacher expectations in cooperative preschools. Urbana, IL. National Institute of Education. Harrington, J. W., Patrick, P. A., Edwards, K. S., & Brand, D.A. (2006). Parental beliefs about autism: Implications for the treating physician. Autism, 10,452- 462. Haussler, A. (1998). Parents' attitudes and experiences regarding treatment for children with autism: A cross-national study. Available from ProQuest Dissertations and Theses. (UMI No. 9840922). Hillman, J. (2006). Supporting and treating families with children on the autistic spectrum: The unique role of the generalist psychologist. Psychotherapy: Theory, Research, Practice, Training, 43(3), 349-358. doi:10.1037/0033-3204.43.3.349 129 Home, R. E. (1990). Accessing programs for infants, toddlers, and preschoolers with disabilities. Washington, DC: A Parent's Guide. Huhtanen, S. L. (2009). Having a child with autism: A mother's perspective. Exceptional Parent, 39(4), 84-86. Individuals with Disabilities Education Improvement Act (IDEIA). (2004). Public Law 108-446. Itzchak, E. B., & Zachor, D. A. (2011). Who benefits from early intervention in autism spectrum disorders? Research in Autism Spectrum Disorders, 5(1), 345-350. Jennett, H. K., Harris, S. L., & Mesibov, G. B. (2003). Commitment to philosophy, teacher efficacy, and burnout among teachers of children with autism. Journal of Autism and Developmental Disorders, 33(6), 583-593. Kalash, L. A. (2009). Perspectives of parents who have a child diagnosed with an autism spectrum disorder. Available from ProQuest Dissertations and Theses. (UMI No. 3406196) Kanner, L. (1968). Autistic disturbances of affective contact. International Journal Of Child & Adolescent Psychiatry, 55(4-8), 98-136. Kasari, C., Freeman, S. F., Bauminger, N., & Alkin, M. C. (1999). Parental perspectives on inclusion: Effects of autism and down syndrome. Journal of Autism and Developmental Disorders, 29(4), 297- 305. Kohler, F. W. (1999). Examining the services received by young children with Autism and their families: A survey of parent responses. Focus on Autism & Other Developmental Disabilities, 14(3), 150. Kovanen, P. S. (2001). Comprehensiveness is a cliche: Professional practice in child assessment and planning. Journal of Early Intervention, 24 (1), 25-34. Kratz, L., Uding, N., Trahms, C. M., Villareale, N., & Kieckhefer, G. M. (2009). Managing childhood chronic illness: Parent perspectives and implications for parent-provider relationships. Families, Systems, & Health, 27(4), 303-313. Leblanc, L., Richardson, W., & Mcintosh, J. (2005). The use of applied behavioral analysis in teaching children with autism. International Journal of Special Education, 20(1), 13-34. Liontos, L. (1992). Family involvement. Research Roundup, 8(3), 2-5. 130 Lord, C., & O'Neill, P. J. (1983). Needs of adolescents with autism. In E. Schopler, & G. B. Mesibov (Eds.), Autism in adolescents and adults (pp. 57-77). New York, NY: Plenum Press. Lovaas, O. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting And Clinical Psychology, 55(1), 3-9. doi:10.1037/0022-006X.55.1.3 Lovaas, 0., Smith, T., & McEachin, J. J. (1989). Clarifying comments on the young autism study: Reply to Schopler, Short, and Mesibov. Journal of Consulting and Clinical Psychology, 57(1), 165-167. doi: 10.1037/0022-006X.57.1.165 Mahoney, G. (1997). Parent-child interaction—the foundation for family-centered early intervention practice: A response to Baird and Peterson. Topics in Early Childhood Special Education, 17(2), 165. Maxwell, J. A. (2005). Qualitative research design: An interactive approach (2nd ed.). Thousand Oaks, CA: Sage Publications. McCloskey, E. (2010). What do I know? Parental positioning in special education International Journal of Special Education, 25(1), 162-170. McClow, C., & Gillespie, C. (1998). Parental reactions to the introduction of the Reggio Emilia approach in Head Start classrooms. Early Childhood Education Journal, 26(2), 131-136. McConnell, S. (2001). Parent involvement and family support: Where do we want to go, and how will we know we are headed there? Journal of Early Intervention, 24 (I), 15-18. McEachin, J. J., Smith, T., & Lovaas, O. (1993). Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal on Mental Retardation, 97(4), 359-372. McWilliam, R. A., Young, H. J., & Harville, K. (1996). Therapy services in early intervention: Current status, barriers, and recommendations. Topics in Early Childhood Special Education, 16, 348-374. Meadan, H., Halle, J. W., & Ebata, A. T. (2010). Families with children who have autism spectrum disorders: Stress and support. Council for Exceptional Children, 27(1), 7-36. Mesibov, G. B., & Shea, V. (1998). The culture of autism: From theoretical understanding to education practice. Retrieved from http://www .autismuk.com/index3subl .htm 131 Mesibov, G. B., Shea, V., & Schopler, E. (2004). The TEACCH approach to autism spectrum disorders. New York, NY: Springer. Midence, K., & O'Neill, M. (1999). The experience of parents in the diagnosis of autism: A pilot study. Autism, 3(3), 273-285. Miles, M. B., & Huberman, A. M. (1994). Qualitative data analysis: an expanded sourcebook. Thousand Oaks, CA: Sage. Mills, A. J., Durepose, G., & Wiebe, E. (Eds.). (2010). Encyclopedia of case study research. Thousand Oaks, CA: Sage. Mulick, J. A., & Butter, E. M. (2002). Educational advocacy for children with autism. Behavioral Interventions, 17(2), 57-74. doi:10.1002/bin.l06 Mulvany, J. (2000). Disability, impairment or illness? The relevance of the social model of disability to the study of mental disorder. Sociology of Health & Illness, 22(5), 582-601. Myers, B. J., Mackintosh, V. H., & Goin-Kochel, R. P. (2009). My greatest joy and my greatest heartache: Parents' own words on how having a child in the autism spectrum has affected their lives and their families' lives. Research in Autism Spectrum Disorders, 3, 670-684. Neuman, S. B. (1993). Toward a collaborative approach to parent involvement: The implications of parents' beliefs. Philadelphia, PA: Temple University. Ogston, P. L., Mackintosh, V. H., & Myers, B. J. (2011) Hope and worry in mothers of children with an autism spectrum disorder or Down syndrome. Research in Autism Spectrum Disorders, 5,1378-1394). doi:10.1016/j.ph Olkin, R. (1999). What psychotherapists should know about disability. New York, NY: The Guilford Press. Opportunities for Otsego. (1976). A procedural manual for the Cooperstown model: A project to serve preschool children with special needs. Cooperstown, NY. Head Start in Ostego County. Palmer, A. (2004). Parent perspective. Exceptional Parent, 34(9), 34-35. Panerai, S., Ferrante, L., & Caputo, V. (1997). The TEACCH strategy in mentally retarded children with autism: A multidimensional assessment. Journal of Autism and Developmental Disorders, 27(3), 345-347. Perez, G. (2006). The promise of preschool: Local California efforts show the potential of a statewide preschool system. Oakland, CA: Children Now. 132 Pullen, L. C. (2008). The P.L.A.Y. Project: A Revolutionary Treatment Approach for Children with Autism. Exceptional Parent, 3#(10), 42-43. Reed, P., Osborne, L., & Comess, M. (2006). Brief report: Relative effectiveness of different home-based behavioral approaches to early teaching intervention. Journal of Autism & Developmental Disorders, 37(9), 1815-1821. doi:10.1007/sl 0803-006-0306-8 Robinson, M., & Dunsmuir, S. (2010). Multi-professional assessment and intervention of children with special educational needs in their early years: The contribution of educational psychology. Educational and Child Psychology, 27(4), 10-21. Sax, P. (2007). Finding common ground: Parents speak out about family-centered practices. Journal of Systemic Therapies, 26(3), 72-90. Schopler, E., & Loftin, J. (1969). Thinking disorders in parents of young psychotic children. Journal of Abnormal Psychology, 74, 281-287. Schopler, E. ,& Mesibov, G. B. (1985). Communication problems in autism. New York, NY: Plenum Press. Schopler, E., & Reichler, R. J. (1971). Parents as cotherapists in the treatment of psychotic children. Journal of Autism and Childhood Schizophrenia, 7(1), 87-102. Schwartz, I. S., & Rodriguez, P. B. (2001). A few issues to consider: The who, what, and where of family support. Journal of Early Intervention, 24( 1), 19-21. Scorgie, K., Wilgosh, L., & McDonald, L. (1999). Transforming partnerships: Parent life management issues when a child has mental retardation. Education and Training in Mental Retardation and Developmental Disabilities, 34, 395-405. Seibers, T. (2008). Disability theory. Ann Arbor, MI: The University of Michigan Press. Seligman, M., & Darling, R. B. (2007). Ordinary families, special children: A systems approach to childhood disability. New York, NY: The Guilford Press. Shea, V. (2005). A perspective on the research literature related to early intensive behavioral intervention (Lovaas) for young children with autism. Communication Disorders Quarterly, 26(2), 102-111. Simpson, R. L., de Boer-Ou, S.R., Griswold, D. E., Myles, B. S., Byrd, S. E., Ganz, J. B., et al. (2005). Autism spectrum disorders: Interventions and treatments for children and youth. Thousand Oaks, CA: Corwin Press. 133 Spencer, K. (2009). A case study examining an elementary principals attitude, perspective, and philosophy about male teachers and school culture. Available from ProQuest Dissertations and Theses. (UMI No. 3374129) Stoner, J. B., & Angell, M. E. (2006). Parent perspectives on role engagement: An investigation of parents of children with ASD and their self-reported roles with education professionals. Focus on Autism and other Developmental Disabilities, 2/(3), 177-189. Taylor-Powell, E., & Renner, M. (2003). Analyzing qualitative data. Program development and evaluation. Madison, WI: University of Wisconsin-Extension. Tews, L. (2007). Early intervention for children with autism: Methodologies critique. Developmental Disabilities Bulletin, 55(1-2), 148-168. Thomas, R. M., & Brubaker, D. L. (2008). Theses and dissertations: A guide to planning, research, and writing (2nd ed.). Thousand Oaks, CA: Corwin Press. Tutt, R., Powell, S., & Thornton, M. (2006). Educational approaches in autism: What we know about what we do. Educational Psychology in Practice, 22(1), 69-81. Valenzano, J. M., & LeBauad, J. (2011). On family, friendship, love and caring for a child with autism- the story of Rock Harmon and family. Exceptional Parent, 41(10% 18-21. Watson, L. R. (1985). The TEACCH communication curriculum. In E. Schopler & G. B. Mesibov, (Eds.), Communication problems in Autism (p. 57-77). New York, NY: Plenum Press. Webster, A., Feiler, A., & Webster, V. (2003). Early intensive family intervention and evidence of effectiveness: Lessons from the South West Autism Programme. Early Child Development & Care, 173(4), 383-398. Wolcott, H. F. (1994). Transforming qualitative data: Description, analysis, and interpretation. Thousand Oaks, CA: Sage Publications. Yin, R. K. (2009). Case study research: Design and methods. Thousand Oaks, CA: Sage. Yin, R. K. (2011). Applications of case study research. Thousand Oaks, CA: Sage. Yura, M. T. (1983). Raising the child with special needs. Individual Psychology: Journal of Adlerian Theory, Research & Practice, 39(4), 369-379. 134 Zachor, D. A., Ben-Itzchak, E., Rabinovich, A., & Lahat, E. (2007). Change in autism core symptoms with intervention. Research in Autism Spectrum Disorders, 1(4), 304-317. 135