Pervasive Developmental Disorders the 1980S to Describe a Class of Disorders

Home , Asperger syndrome, Developmental disorder

FS20, January 1998, Resources Updated 2003

BRIEFING PAPER N A publication of the National Dissemination Center for Children with Disabilities PPerervvasasivivee DDevevelopmenelopmentaltal I DisordersDisorders

by Luke Y. Tsai, M.D.

C Every year the National Dissemination Center for Children with Disabilities (NICHCY) receives thousands of requests for information about the diagnosis, educational programming, and special needs Table of Contents of children and youth with Pervasive Developmental Disor- Introduction...... 2 ders (PDD). Over the past few The PDD Category & its H years, PDD has become a subject Five Specific Disorders ...... 2 of increased attention among parents, professionals, and The Cause of PDDNOS ...... 6 policymakers across the country. Symptoms & Signs of PDDNOS ...... 6 NICHCY developed this Briefing Paper in response to the Diagnosing PDDNOS...... 9 growing concern about, and Special Education interest in, this disability. This & PDDNOS ...... 10 publication is designed to Treatment of PDDNOS ...... 11 C answer some of the most com- monly asked questions regarding Finding a Parent PDD and to provide concerned Support Group ...... 15 individuals with other resources Conclusion ...... 15 for information and support. References...... 15 Y Organizations ...... 15 INTRODUCTION The term Pervasive Develop- mental Disorders was first used in Pervasive Developmental Disorders the 1980s to describe a class of disorders. This class of disorders has in common the following characteristics: impairments in social interaction, imaginative activity, verbal and nonverbal Autistic Rett’s Asperger’s Childhood PDDNOS communication skills, and a Disorder Disorder Disintegrative Disorder limited number of interests and Disorder activities that tend to be repetitive. The manual used by physicians and mental health professionals as a guide to diagnosing disorders is sion about the term, because the THE PDD CATEGORY & the Diagnostic and Statistical Manual term PDD actually refers to a ITS FIVE SPECIFIC DISORDERS of Mental Disorders (DSM). The category of disorders and is not a DSM was last revised in 1994. In diagnostic label. The appropriate All types of PDD are neurologi- this latest revision, known as the diagnostic label to be used is cal disorders that are usually DSM-IV, five disorders are identi- PDDNOS—Pervasive Develop- evident by age 3. In general, fied under the category of Perva- mental Disorder Not Otherwise children who have a type of PDD sive Developmental Disorders (see Specified—not PDD (the umbrella have difficulty in talking, playing chart at right): (1) Autistic Disor- category under which PDDNOS is with other children, and relating der, (2) Rett’s Disorder, (3) Child- found). to others, including their family. hood Disintegrative Disorder, (4) Asperger’s Disorder, and (5) Accordingly, this Briefing Paper According to the definition set Pervasive Developmental Disorder will use the term PDD to refer to forth in the DSM-IV (American Not Otherwise Specified, or the overall category of Pervasive Psychiatric Association, 1994), PDDNOS. (Editor’s note in 2003: Developmental Disorders and the Pervasive Developmental Disor- The current version of the DSM is term PDDNOS to refer to the ders are characterized by severe the DSM-IV-TR, published in specific disorder, Pervasive Devel- and pervasive impairment in 2000. The categorization of PDD opmental Disorder Not Otherwise several areas of development: that is described in this Briefing Specified. The majority of this • social interaction skills; Paper has not changed.) Briefing Paper will focus on PDDNOS. • communication skills; or Many of the questions parents and education professionals ask All of the disorders that fall • the presence of sterotyped NICHCY have to do with children under the category of PDD share, behavior, interests, and activi- who have been diagnosed with to some extent, similar characteris- ties. (p. 65) “PDD.” Doctors are divided on tics. To understand how the the use of the term PDD. Many disorders differ and how they are The Five Types of PDD professionals use the term PDD as alike, it’s useful to look at the a short way of saying PDDNOS. definition of each disorder. There- (1) Autistic Disorder. Autistic Some doctors, however, are hesi- fore, before we begin our discus- Disorder, sometimes referred to as tant to diagnose very young sion of PDDNOS, let us look first early infantile autism or childhood children with a specific type of at the definition of the general autism, is four times more com- PDD, such as Autistic Disorder, category PDD and its specific mon in boys than in girls. Chil- and therefore only use the general disorders. dren with Autistic Disorder have a category label of PDD. This ap- moderate to severe range of proach contributes to the confu- communication, socialization, and behavior problems. Many children with autism also have mental

NICHCY: 1.800.695.0285 2 Pervasive Developmental Disorders (FS20) Diagnostic Criteria for Autistic Disorder Diagnostic Criteria A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3): for Rett’s Disorder (1) qualitative impairment in social interaction, as manifested A. All of the following: by at least two of the following: (a) marked impairment in the use of multiple nonverbal behav- (1) apparently normal iors such as eye-to-eye gaze, facial expression, body postures, prenatal and perinatal and gestures to regulate social interaction development (b) failure to develop peer relationships appropriate to develop- (2) apparently normal mental level psychomotor develop- (c) a lack of spontaneous seeking to share enjoyment, interests, ment through the first 5 or achievements with other people (e.g., by a lack of showing, months after birth bringing, or pointing out objects of interest) (3) normal head circum- (d) lack of social or emotional reciprocity ference at birth (2) qualitative impairments in communication as manifested by at B. Onset of all of the follow- least one of the following: ing after the period of normal (a) delay in, or total lack of, the development of spoken lan- development guage (not accompanied by an attempt to compensate through (1) deceleration of head alternative modes of communication such as gesture or mime) growth between ages 5 (b) in individuals with adequate speech, marked impairment in and 48 months the ability to initiate or sustain a conversation with others (2) loss of previously (c) stereotyped and repetitive use of language or idiosyncratic acquired purposeful hand language skills between ages 5 and 30 months with the (d) lack of varied, spontaneous make-believe play or social subsequent development imitative play appropriate to developmental level of stereotyped hand (3) restricted repetitive and stereotyped patterns of behavior, movements (e.g., hand- interests, and activities, as manifested by at least one of the follow- wringing or hand washing: ing) (a) encompassing preoccupation with one or more stereotyped (3) loss of social engage- and restricted patterns of interest that is abnormal either in ment early in the course intensity or focus (although often social (b) apparently inflexible adherence to specific, nonfunctional interaction develops later) routines or rituals (4) appearance of poorly (c) stereotyped and repetitive motor mannerisms (e.g., hand or coordinated gait or trunk finger flapping or twisting, or complex whole-body movements) movements (d) persistent preoccupation with parts of objects (5) severely impaired expressive and receptive B. Delays or abnormal functioning in at least one of the following language development areas, with onset prior to age 3 years: (1) social interaction, (2) with severe psychomotor language as used in social communication, or (3) symbolic or retardation. (APA, 1994, imaginative play. pp. 72-73) C. The disturbance is not better accounted for by Rett’s Disorder or (Reprinted with permission from the Childhood Disintegrative Disorder. (APA, 1994, pp. 70-71) Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. (Reprinted with permission from the Diagnostic and Statistical Manual of Mental Copyright 1994 American Psychiatric Disorders, Fourth Edition. Copyright 1994 American Psychiatric Association.) Association.)

Pervasive Developmental Disorders (FS20) 3 NICHCY: 1.800.695.0285 retardation. The DSM-IV criteria by abilities such as speech, reasoning, in multiple areas of functioning which Autistic Disorder is diag- and hand use. The repetition of (such as the ability to move, nosed are presented on page 3. certain meaningless gestures or bladder and bowel control, and movements is an important clue to social and language skills) follow- (2) Rett’s Disorder. Rett’s Disor- diagnosing Rett’s Disorder; these ing a period of at least 2 years of der, also known as Rett Syndrome, gestures typically consist of con- apparently normal development. is diagnosed primarily in females. stant hand-wringing or hand- By definition, Childhood Disinte- In children with Rett’s Disorder, washing (Moeschler, Gibbs, & grative Disorder can only be diag- development proceeds in an Graham 1990). The diagnostic nosed if the symptoms are pre- apparently normal fashion over criteria for Rett’s Disorder as set ceded by at least 2 years of normal the first 6 to 18 months at which forth in the DSM-IV appear in the development and the onset of point parents notice a change in second box on page 3. decline is prior to age 10 (American their child’s behavior and some Psychiatric Association, 1994). regression or loss of abilities, (3) Childhood Disintegrative DSM-IV criteria are presented especially in gross motor skills Disorder. Childhood Disintegrative below. such as walking and moving. This Disorder, an extremely rare disor- is followed by an obvious loss in der, is a clearly apparent regression (4) Asperger’s Disorder. Asperger’s Disorder, also referred to as Asperger’s or Asperger’s Diagnostic Criteria for Childhood Disintegrative Disorder Syndrome, is a developmental disorder characterized by a lack of A. Apparently normal development for at least the first 2 years after social skills; difficulty with social birth as manifested by the presence of age-appropriate verbal and relationships; poor coordination nonverbal communication, social relationships, play, and adaptive and poor concentration; and a behavior. restricted range of interests, but B. Clinically significant loss of previously acquired skills (before age normal intelligence and adequate 10 years) in at least two of the following areas: language skills in the areas of vocabulary and grammar. (1) expressive or receptive language Asperger’s Disorder appears to (2) social skills or adaptive behavior have a somewhat later onset than (3) bowel or bladder control Autistic Disorder, or at least is recognized later. An individual (4) play with Asperger’s Disorder does not (5) motor skills possess a significant delay in C. Abnormalities of functioning in at least two of the following language development; however, areas: he or she may have difficulty understanding the subtleties used (1) qualitative impairment in social interaction (e.g., impairment in conversation, such as irony and in nonverbal behaviors, failure to develop peer relationships, humor. Also, while many individu- lack of social or emotional reciprocity) als with autism have mental retar- (2) qualitative impairments in communication (e.g., delay or dation, a person with Asperger’s lack of spoken language, inability to initiate or sustain a conver- possesses an average to above sation, stereotyped and repetitive use of language, lack of varied average intelligence (Autism Soci- make-believe play) ety of America, 1995). Asperger’s is sometimes incorrectly referred to (3) restricted, repetitive, and stereotyped patterns of behavior, as “high-functioning autism.” The interests, and activities, including motor stereotypes and man- diagnostic criteria for Asperger’s nerisms Disorder as set forth in the DSM- D. The disturbance is not better accounted for by another specific IV are presented in the box on Pervasive Developmental Disorder or by Schizophrenia. (APA, 1994, page 5. pp. 74-75) (5) Pervasive Developmental (Reprinted with permission from the Diagnostic and Statistical Manual of Mental Disorder Not Otherwise Specified. Disorders, Fourth Edition. Copyright 1994 American Psychiatric Association.) Children with PDDNOS either (a)

NICHCY: 1.800.695.0285 4 Pervasive Developmental Disorders (FS20) do not fully meet the criteria of Diagnostic Criteria for Asperger’s Disorder symptoms clinicians use to diagnose any of the four specific types A. Qualitative impairment in social interaction, as manifested by at of PDD above, and/or (b) do not least two of the following: have the degree of impairment (1) marked impairment in the use of multiple nonverbal behav- described in any of the above four iors such as eye-to-eye gaze, facial expression, body postures, and PDD specific types. gestures to regulate social interaction According to the DSM-IV, this (2) failure to develop peer relationships appropriate to develop- category should be used “when mental level there is a severe and pervasive impairment in the development of (3) a lack of spontaneous seeking to share enjoyment, interests, social interaction or verbal and or achievements with other people (e.g., by a lack of showing, nonverbal communication skills, bringing, or pointing out objects of interest) or when stereotyped behavior, (4) lack of social or emotional reciprocity interests, and activities are present, B. Restricted repetitive and stereotyped patterns of behavior, inter- but the criteria are not met for a ests, and activities, as manifested by at least one of the following: specific Pervasive Developmental Disorder, Schizophrenia, (1) encompassing preoccupation with one or more stereotyped Schizotypal Personality Disorder, and restricted patterns of interest that is abnormal either in or Avoidant Personality Disorder” intensity or focus (American Psychiatric Association, (2) apparently inflexible adherence to specific, nonfunctional 1994, pp. 77-78). routines or rituals (3) stereotyped and repetitive motor mannerisms (e.g., hand or The Confusion of finger flapping or twisting, or complex whole-body movements) Diagnostic Labels (4) persistent preoccupation with parts of objects The intent behind the DSM-IV is that the diagnostic criteria not be C. The disturbance causes clinically significant impairment in social, used as a checklist but, rather, as occupational, or other important areas of functioning. guidelines for diagnosing pervasive D. There is no clinically significant general delay in language (e.g., developmental disorders. There are single word used by age 2 years, communicative phrases used by age no clearly established guidelines 3 years). for measuring the severity of a E. There is no clinically significant delay in cognitive development or person’s symptoms. Therefore, the in the development of age-appropriate self-help skills, adaptive line between autism and PDDNOS behavior (other than in social interaction), and curiosity about the is blurry (Boyle, 1995). environment in childhood. As discussed earlier, there is still F. Criteria are not met for another specific Pervasive Developmental some disagreement among profes- Disorder, or Schizophrenia. (APA, 1994, p. 77) sionals concerning the PDDNOS (Reprinted with permission from the Diagnostic and Statistical Manual of Mental label. Some professionals consider Disorders, Fourth Edition. Copyright 1994 American Psychiatric Association.) “Autistic Disorder” appropriate only for those who show extreme symptoms in every one of several Disorder and by another practitio- having Autistic Disorder. Despite developmental areas related to ner as having PDDNOS (or PDD, the DSM-IV concept of Autistic autism. Other professionals are if the practitioner is abbreviating Disorder and PDDNOS being two more comfortable with the term for PDDNOS). distinct types of PDD, there is Autistic Disorder and use it to clinical evidence suggesting that cover a broad range of symptoms Generally, an individual is Autistic Disorder and PDDNOS connected with language and diagnosed as having PDDNOS if are on a continuum (i.e., an indi- social dysfunction. Therefore, an he or she has some behaviors that vidual with Autistic Disorder can individual may be diagnosed by are seen in autism but does not improve and be rediagnosed as one practitioner as having Autistic meet the full DSM-IV criteria for having PDDNOS, or a young child

Pervasive Developmental Disorders (FS20) 5 NICHCY: 1.800.695.0285 can begin with PDDNOS, develop THE CAUSE the possibility that PDDNOS and more autistic features, and be OF PDDNOS Autistic Disorder are on a con- rediagnosed as having Autistic tinuum, many clinical features Disorder). Both behavioral and biological described in the following section studies have generated sufficient are very similar to those being To add to the list of labels that evidence to suggest that PDDNOS described in the literature for parents, teachers, and others may is caused by a neurological abnor- Autistic Disorder. encounter, a new classification mality—problems with the ner- system was recently developed by vous system. However, no specific Deficits in ZERO TO THREE: National Center cause has been identified. Social Behavior for Infants, Toddlers, and Families (1994). Under this system, called While studies have found Some infants with PDDNOS the Diagnostic Classification of various nervous-system problems, tend to avoid eye contact and Mental Health and Developmental no single problem has been con- demonstrate little interest in the Disorders of Infancy and Early Child- sistently found, and exact causes human voice. They do not usually hood, the term Multisystem Devel- are far from clear. This may be due put up their arms to be picked up opmental Disorder, or MSDD, is to the current approach of defin- in the way that typical children do. used to describe pervasive devel- ing PDDNOS based on behaviors They may seem indifferent to opmental disorders. (as opposed to, say, genetic test- affection and seldom show facial ing). Hence, it is possible that responsiveness. As a result, parents However, amidst all this confu- PDDNOS is the result of several often think the child is deaf. In sion, it is very important to re- different conditions. If this is the children with fewer delays, lack of member that, regardless of case, it is anticipated that future social responsiveness may not be whether a child’s diagnostic label is studies will identify a range of obvious until well into the second autism, PDDNOS, or MSDD, his causes. or third year of life. or her treatment is similar. SYMPTOMS In early childhood, children AND SIGNS OF PDDNOS with PDDNOS may continue to show a lack of eye contact, but Generally, children are 3 to they may enjoy a tickle or may 4 years old before they exhibit passively accept physical contact. PDDNOS enough symptoms for parents They do not develop typical to seek a diagnosis. There is attachment behavior, and there is a spectrum no set pattern of symptoms may seem to be a failure to bond. disorder. It can be and signs in children with Generally, they do not follow their PDDNOS. It is important to parents about the house. The mild, with the child realize that a very wide range majority do not show normal of diversity is seen in children separation or stranger anxiety. exhibiting a few with PDDNOS. All the items These children may approach a of behavior described in this stranger almost as readily as they symptoms while in the section are common in these do their parents. Many such children, but a single child children show a lack of interest in school or neighborhood seldom shows all the features at being with or playing with other one time. In other words, all children. They may even actively environment. Other children with PDDNOS do not avoid other children. have the same degree or inten- children may have a sity of the disorder. PDDNOS In middle childhood, such more severe form of can be mild, with the child children may develop a greater exhibiting a few symptoms while awareness or attachment to par- PDDNOS and have in the school or neighborhood ents and other familiar adults. environment. Other children may However, social difficulties con- difficulties in all areas have a more severe form of tinue. They still have problems PDDNOS and have difficulties in with group games and forming of their lives. all areas of their lives. Because of peer relationships. Some of the

NICHCY: 1.800.695.0285 6 Pervasive Developmental Disorders (FS20) children with less severe PDDNOS Impairment in may become involved in other Understanding Speech When children with children’s games. Comprehension PDDNOS develop As these children grow older, of speech in children they may become affectionate and with PDDNOS is speech, they may not friendly with their parents and impaired to varying siblings. However, they still have degrees, depending use it in ordinary ways. difficulty understanding the on where the child complexity of social relationships. is within the wide Some individuals with less severe spectrum of impairments may have a desire for PDDNOS. Individu- friendships. But a lack of response als with PDDNOS to other people’s interests and who also have mental emotions, as well as a lack of retardation may never understanding of humor, often develop more than a limited words or phrases repeatedly results in these youngsters saying understanding of speech. Children without a communicative pur- or doing things that can slow the who have less severe impairments pose—just because it feels good); development of friendships. may follow simple instructions if as a step between a child being given in an immediate context or nonverbal and verbal; or as a way Impairment in Nonverbal with the aid of gestures (e.g., to communicate (Prizant & Rydell, Communication telling the child to “put your glass 1993). Other children develop the on the counter,” while pointing to appropriate use of phrases copied In early childhood, children the counter). When impairment is from others. This is often accom- with PDDNOS may develop the mild, only the comprehension of panied by pronoun reversal in the concrete gesture of pulling adults subtle or abstract meanings may be early stages of language develop- by the hand to the object that is affected. Humor, sarcasm, and ment. For instance, when the child wanted. They often do this with- common sayings (e.g., “it’s raining is asked “How are you?” he or she out the typical accompanying facial cats and dogs”) can be confusing may answer “You are fine.” expression. They seldom nod or for individuals with the most mild shake their heads to substitute for PDDNOS. The actual production of or to accompany speech. Children speech may be impaired. The with PDDNOS generally do not Impairment in Speech child’s speech may be like that of a participate in games that involve Development robot, characterized by a monoto- imitation. They are less likely than nous, flat delivery with little typical children to copy their Many infants with PDDNOS change in pitch, change of empha- parents’ activity. do not babble, or may begin to sis, or emotional expression. babble in their first year but then In middle and late childhood, stop. When the child develops Problems of pronunciation are such children may not frequently speech, he or she often exhibits common in young children with use gestures, even when they abnormalities. Echolalia (seemingly PDDNOS, but these often dimin- understand other people’s gestures meaningless repetition of words or ish as the child gets older. There fairly well. Some children do phrases) may be the only kind of may be a striking contrast between develop imitative play, but this speech some children acquire. clearly enunciated echolalic speech tends to be repetitive. Though echolalic speech might be and poorly pronounced spontaneous speech. Some children have a Generally, children with produced quite accurately, the chanting or singsong speech, with PDDNOS are able to show joy, child may have limited compre- odd prolongation of sounds, fear, or anger, but they may only hension of the meaning. In the syllables, and words. A question- show the extreme of emotions. past, it was thought that echolalia like intonation may be used for They often do not use facial had no real function. More recent statements. Odd breathing expressions that ordinarily show studies have found that echolalia rhythms may produce staccato subtle emotion. can serve several functions, such as self-stimulation (when a child says speech in some children.

Pervasive Developmental Disorders (FS20) 7 NICHCY: 1.800.695.0285 and become very distressed if these Beginning the Search for Information are disturbed. Efforts to teach new activities may be resisted. Sam was an active and busy child. But his parents were worried about him. Compared with the other 3-year-olds they knew, Sam Ritualistic or compulsive behaviors. was different—he wasn’t talking, and he didn’t seem to want or try Ritualistic or compulsive behaviors to play with his sister. At day care Sam wouldn’t join usually involve rigid routines (e.g., in with the other kids, but he really enjoyed insistence on eating particular playing with water. He would splash and play foods) or repetitive acts, such as at the sink for hours, with a big smile on his hand flapping or finger manner- face. After a year of expressing concern to isms (e.g., twisting, flicking move- their pediatrician, Sam’s parents finally ments of hands and fingers carried obtained a referral to a developmental out near the face). Some children psychologist who diagnosed Sam as develop preoccupations; they may having PDDNOS. The pediatrician also spend a great deal of time memo- suggested that they get the school to test rizing weather information, state Sam. The school tested him and said he capitals, or birth dates of family had autism. No one seemed to know any- members. thing about PDDNOS, and although Sam’s parents had heard of autism, they didn't know much about Abnormal attachments and it. They began to search for information on what behaviors. Some children develop PDDNOS was and what autism was. intense attachments to odd objects, such as pipe cleaners, batter- ies, or film canisters. Some chil- Abnormal grammar is fre- the immediate context. They may dren may have a preoccupation quently present in the spontane- talk excessively about their special with certain features of favored ous speech of verbal children with interests, and they may talk about objects, such as their texture, taste, PDDNOS. As a result: the same pieces of information smell, or shape. whenever the same subject is • phrases may be telegraphic Unusual responses to sensory raised. The most able persons can experiences. Many children may (brief and monotone) and exchange concrete pieces of infor- distorted; seem underresponsive or mation that interest them, but overresponsive to sensory stimuli. • words of similar sound or once the conversation departs Thus, they may be suspected of related meaning may be from this level, they can become being deaf or visually impaired. It muddled; lost and may withdraw from social is common for such young chil- contact. Ordinary to-and-fro dren to be referred for hearing and • some objects may be labeled conversational chatter is lacking. vision tests. Some children avoid by their use; Thus, they give the impression of gentle physical contact, yet react talking “at” someone, rather than • new words may be coined; and with pleasure to rough-and- “with” someone. tumble games. Some children carry • prepositions, conjunctions, food preferences to extremes, with and pronouns may be Unusual Patterns favored foods eaten to excess. dropped from phrases or used of Behavior Some children limit their diet to a incorrectly. The unusual responses of small selection, while others are hearty eaters who do not seem to When children with PDDNOS children with PDDNOS to the know when they are full. do develop functional speech, they environment take several forms. may not use it in ordinary ways. Resistance to change. Many Disturbance of Movement Such children tend to rely on children are upset by changes in repetitive phrases. Their speech the familiar environment. Even a The typical motor milestones does not usually convey imagina- minor change of everyday routine (e.g., throwing, catching, kicking) tion, abstraction, or subtle emo- may lead to tantrums. Some may be delayed but are often tion. They generally have difficulty children line up toys or objects within the normal range. Young talking about anything outside of

NICHCY: 1.800.695.0285 8 Pervasive Developmental Disorders (FS20) children with PDDNOS usually to persist. Those children with a No Specific Test Available have difficulty with imitation skills, low IQ show more severely im- such as clapping hands. Many such paired social development. They Currently, no objective biologi- children are very overactive, yet are more likely to display unusual cal test, such as a blood test or an tend to become less overactive in social responses, such as touching X-ray examination, can confirm a adolescence. Children with or smelling people, ritualistic child’s PDDNOS diagnosis. Diag- PDDNOS may exhibit characteris- behavior, or self-injury. nosing PDDNOS is complicated tics such as grimacing, hand flap- and much like putting together a ping or twisting, toe walking, Associated Features jigsaw puzzle that does not have a lunging, jumping, darting or clear border and picture. Therefore, pacing, body rocking and swaying, The emotional expression of it is reasonable to say that, when a or head rolling or banging. In some children with PDDNOS may PDDNOS diagnosis is made, it some cases the behaviors appear be flattened, excessive, or inappro- reflects the clinician’s best guess. only from time to time; in other priate to the situation. For no Obtaining an accurate diagnosis cases they are present continu- obvious reason, they may scream requires an assessment conducted ously. or sob inconsolably one time, yet by a well-trained professional who giggle and laugh hysterically an- specializes in developmental Intelligence and other time. Real dangers, such as disorders, usually a child psychia- Cognitive Deficits moving vehicles or heights, may be trist, developmental pediatrician, ignored, yet the same child might pediatric neurologist, developmen- Generally, children with seem frightened of a harmless tal pediatrician, child psychologist, PDDNOS do very well on tests object, such as a particular stuffed developmental psychologist, or requiring manipulative or visual animal. neuropsychologist. skills or immediate memory, while they do poorly on tasks demand- DIAGNOSING PDDNOS Assessment ing symbolic or abstract thought PDDNOS and sequential logic. The process The purpose of PDDNOS assess- The DSM-IV suggests that the of learning and thinking in these ment is twofold: to gather infor- diagnostic label of PDDNOS be children is impaired, most particu- mation to formulate an accurate used when there is a severe and larly in the capacity for imitation, diagnosis and to provide informa- pervasive impairment in the devel- comprehension of spoken words tion that will form the basis of an opment of reciprocal social interac- and gestures, flexibility, inventive- appropriate intervention plan for tion, verbal and nonverbal com- ness, learning and applying rules, the individual child and family. munication skills, or the develop- and using acquired information. Assessment of PDDNOS usually ment of seemingly meaningless Yet, a small number of children includes the following elements: repetitive behavior, interests, and with PDDNOS show excellent rote activities, but when the criteria are Medical assessment. The medical memories and special skills in not completely met for a specific evaluation should include a thor- music, mechanics, mathematics, disorder within the category PDD ough birth, developmental, medi- and reading. (e.g., Autistic Disorder, Rett’s cal, and family history, and a full Because many children with Disorder, Asperger’s physical and neurological PDDNOS are either without Disorder). How- examination. Not all functional speech or otherwise ever, the DSM-IV children with PDDNOS untestable, some people question framework has require laboratory tests the validity of testing their intelli- not offered such as a chromo- gence. Moreover, it has been specific tech- some study, includ- observed that a number of these niques or ing a test for Fragile children show major improve- criteria for X, an EEG (which ments in other developmental diagnosing measures the brain’s areas during the follow-up period PDDNOS. electrical activity), or without a change in their tested a brain scan such as IQ. Follow-up studies have also MRI (an X-ray that shown that retardation present at gives a picture of the the time of initial diagnosis tends brain’s anatomy). The

Pervasive Developmental Disorders (FS20) 9 NICHCY: 1.800.695.0285 primary care physician determines direct observation and interviewing communication, such as sign if these are needed. Although the the parents) should be used to language and/or using a communi- cause of PDDNOS is generally evaluate the child on the following cation board (i.e., pointing to unknown, the physician may points: pictures to express oneself). discuss some medical conditions that do not cause PDDNOS but • preacademic skills (e.g., shape Occupational assessment. An tend to be found in such chil- and letter naming), occupational therapist may evalu- dren—for example, seizure disor- ate the child to determine the • academic skills (e.g., reading nature of his or her sensory inte- der. Associated conditions can and arithmetic), cause or worsen a child’s prob- grative functioning: how the child’s lems. • daily living skills (e.g., toileting, different senses—hearing, sight, dressing, eating), and taste, smell, touch—work together. Interviews with the parents, child, Standardized tools are used to and child’s teacher. A child with • learning style and problem- assess fine motor skills (such as PDDNOS may exhibit different solving approaches. using fingers to pick up small abilities and behaviors in different objects), gross motor skills (such settings or situations. Parents and Communication assessment. as running and jumping), whether teachers can provide information Formal testing, observational the child is right or left handed, about behaviors not observed assessment, and interviewing the and various visual skills (such as during the formal testing sessions. child’s parents are all useful strate- depth perception). gies for assessing communication Behavior rating scales. Checklists skills. It is important to assess a Evaluation summary. The profes- of possible problems should be range of communication skills, sional evaluating a child will use all completed by parents or caretakers including the child’s interest in the information collected through familiar with the child. Many communication, why (for what these varying techniques to decide diagnosticians use the checklist for purpose) the child communicates, whether that child has a disability autism. However, no scale has yet the content and context of the that falls under the category of been developed specifically to communication, how the child PDD. Assessment and evaluation determine the diagnosis of communicates (including facial can be done through the child’s PDDNOS. expression, posture, gestures, etc.), local public school or a private and how well the child under- practitioner. Direct behavioral observations. stands when others communicate The child’s behavior is recorded as with him or her. Assessment results SPECIAL EDUCATION it happens, and assessment results should be used when designing a AND PDDNOS are often graphed to aid interpreta- communication program for the By law, schools must make tion. This type of assessment can child. This may incorporate one or special services available to eligible be carried out either in an artificial more alternative forms to spoken situation (e.g., a child taking an children with disabilities. These intelligence test) or in a natural services are called special education situation (e.g., a child’s home and related services (discussed more or classroom). below). The law that requires this is the Individuals with Disabilities Psychological assessment. The Education Act, or IDEA. Under the psychologist uses standardized IDEA, school-aged children who instruments to evaluate the are thought to have a disability child’s cognitive, social, emo- must be evaluated by the public tional, behavioral, and adaptive schools at no cost to parents. functioning. Parents learn in Based on the evaluation, a deter- which areas of development mination is made as to their their child exhibits delays. eligibility for services. Educational assessment. Both IDEA defines categories of formal assessment (such as the disability under which a child is use of standardized tests) and considered eligible for services. informal assessment (such as These categories are: autism, deaf-

NICHCY: 1.800.695.0285 10 Pervasive Developmental Disorders (FS20) blindness, hearing impairments including deafness, mental retarda- A Mother’s Story tion, other health impairments, orthopedic impairments, serious Ryan, always in a whirl of activity, has had many labels. He was emotional disturbance, specific diagnosed with PDDNOS at age three and a half. When he went learning disabilities, speech or to preschool, his label was “developmentally delayed.” Now language impairments, traumatic he’s 8 years old, and his label is “autistic.” brain injury, visual impairments He spends most of his time in a 2nd including blindness, or multiple grade class. He’s doing great, but he disabilities. If permitted by the still needs lots of extra help—speech state and the local educational therapy, occupational therapy, and agency, a school may also provide physical therapy. He loves playing services to a student, from age 3 soccer with kids in his class. His through age 9, under the separate disability is only one part of who he category of “developmental delay.” is; he also has lots of strengths and Parents should check with their talents. Every day still has its chal- state department of special educa- lenges, but we love him. He’s not a tion to find out what guidelines label—he’s Ryan. their state uses.

It’s important to realize that a be provided on a sliding-scale and the school will develop an child may have a disability and still basis (in other words, according to Individualized Education Program not be eligible for special educa- the parents’ ability to pay). (IEP). This is a document that lists, tion and related services. For a among other things, the child’s child to be determined to be Early intervention services are strengths and weaknesses, and eligible, the child’s disability must designed to meet the developmen- what special education and related adversely affect his or her educa- tal needs of the infant or toddler services the school will provide to tional performance. in areas such as their physical address those needs. If the child is development, cognitive develop- less than 3 years old, he or she will Special education is instruction ment, communication develop- have an Individualized Family that is specially designed to meet a ment, social or emotional develop- Service Plan, (IFSP). Parents can child’s unique educational needs. ment, or adaptive development. contact their state parent training Related services can include a range Services include (but are not and information center (PTI) or of services that are provided to limited to) such services as: family NICHCY for helpful information help the student benefit from his training and home visits, special about IEP or IFSP development or her special education. Related instruction, speech-language and the special education process. services include (but are not pathology, vision services, and limited to) such services as occupa- occupational therapy. To the TREATMENT tional therapy, speech therapy, or maximum extent appropriate, early OF PDDNOS physical therapy. Both special intervention services are to be education and related services provided in natural environments, On the whole, children with must be provided at no cost to the including the home and commu- PDDNOS share the social and parents; both can be extremely nity settings in which children communicative disabilities found beneficial for children with without disabilities participate. in children with Autistic Disorder. PDDNOS. They often need services or treat- The IFSP and the IEP ments similar to those provided to Services to very young children children with autism. are also covered under the IDEA. The majority of school-aged Through the Program for Infants children with PDDNOS will need Traditional Methods and Toddlers with Disabilities, some special education services, states make early intervention services just as those who are younger will No one therapy or method will available to eligible infants and need early intervention services. If work for all individuals with toddlers (birth through two years). a school-aged child is found Autistic Disorder or PDDNOS. Not all services are free; some may eligible for services, the parents Many professionals and families

Pervasive Developmental Disorders (FS20) 11 NICHCY: 1.800.695.0285 will use a range of treatments fear. Think of the child’s behavior treating PDDNOS. Many children simultaneously, including behavior problem as a message to be de- with PDDNOS experience the modification, structured educa- coded. Try to determine the pos- greatest difficulty in school, where tional approaches, medications, sible cause of the behavior. Has demands for attention and im- speech therapy, occupational the child’s routine or schedule pulse control are virtual require- therapy, and counseling. These changed recently? Has something ments for success. Behavioral treatments promote more typical new been introduced that may be difficulties can prevent some social and communication behav- distressing or confusing the child? children from adapting to the ior and minimize negative behav- When a child’s communication classroom. However, with appro- iors (e.g., hyperactivity, meaning- skills improve, behavior problems priate educational help, a child less, repetitive behavior, self-injury, often diminish—the child now has with PDDNOS can succeed in aggressiveness) that interfere with a means of expressing what is school. the child’s functioning and learn- bothering him or her, without ing. There has been an increasing resorting to negative behavior. The most essential ingredient focus on treating preschool chil- of a quality educational program is dren with PDDNOS by working The use of positive behavioral a knowledgeable teacher. Other closely with family members to support strategies for these chil- elements of a quality educational help the children cope with the dren has proved effective. It is program include: important to remember that: problems encountered at home • structured, consistent, predict- before they enter school. Many 1. Programs should be de- able classes with schedules and times, the earlier these children signed on an individual basis, assignments posted and clearly begin treatment, the better the because children vary greatly in explained; outcome. their disabilities and abilities. Treatment approaches that work in • information presented visually Addressing behavior issues. As as well as verbally; children with PDDNOS struggle to certain cases may not work in make sense of the many things others. • opportunities to interact with that are confusing to them, they 2. Children with PDDNOS nondisabled peers who model do best in an organized environ- have difficulty generalizing from appropriate language, social, ment where rules and expectations one situation to another. The skills and behavioral skills; are clear and consistent. The child’s they have learned in school tend • a focus on improving a child’s environment needs to be very not to be transferred to the home structured and predictable. communications skills using or other settings. It is very impor- tools such as communication Many times a behavior prob- tant to be consistent in the treat- devices; lem indicates that the child is ment of a problem across all areas trying to communicate some- of the child’s life—school, commu- • reduced class size and an thing—confusion, frustration or nity, and home. This encourages appropriate seating arrange- generalization of behavior ment to help the child with changes. PDDNOS avoid distraction; 3. A home-community- • modified curriculum based on based approach, which the particular child’s strengths trains parents and special and weaknesses; education teachers to carry out positive behav- • using a combination of posi- ioral support strategies, tive behavioral supports and can be instrumental in other educational interven- achieving maximum tions; and results. • frequent and adequate com- Appropriate educa- munication among teachers, tional program. parents, and the primary care Education is the clinician. primary tool for

NICHCY: 1.800.695.0285 12 Pervasive Developmental Disorders (FS20) Medical treatment. The primary aim of medical treatment of chil- Children with dren with PDDNOS is to ensure physical and psychological health. PDDNOS are not A good preventive health care program should include regular the only ones who need physical checkups to monitor growth, vision, hearing, and blood extra help and support. pressure; immunization according to schedule; regular visits to the Parenting a child with dentist; and attention to diet and hygiene. special needs is a An effective medical treatment demanding task. begins with a thorough medical assessment. The pretreatment assessment is essential for detect- ing existing medical conditions, feedback from the child, parents, and carefully assess the program. such as a seizure disorder. and teachers. It’s important to ask for a written description of the program, There is no one specific medi- Psychological treatment. Counsel- including its length, the frequency cation that helps all children with ing may be helpful to families to of sessions, cost, and the rationale, PDDNOS. Some medications help them adjust to raising a child philosophy, or purpose underly- have been found to be helpful, with a disability. If the child is ing the program. It’s also impor- but for many children with autism already attending a school pro- tant to investigate the credentials or PDDNOS, medication levels gram, both parents and teachers of the program director and staff need to be experimented with need to be told of the symptoms and whether evidence exists to until the optimal combination and of PDDNOS and how those prove the effectiveness of the dosage are found. Since this differs symptoms may affect the child’s program, as well as the possible with each child, there is no set ability to function at home, in the negative side effects. Here are medical treatment for children neighborhood, in school, and in some alternative programs avail- with PDDNOS but, rather, an social situations. Psychologists can able: individual medication regimen for also provide ongoing assessments, each. Because of these complexi- school consultation, case manage- Facilitated communication. This ties, in the eyes of many, medica- ment, and behavior training. Some is a method of encouraging people tion therapy is viewed as a treat- children also benefit from counsel- with communication impairments ment to be used only when other ing from an experienced practitio- to express themselves. By provid- types of treatment have been ner who knows about PDDNOS. ing physical assistance, a person, unsuccessful. It is important to Family teamwork can ease the called a facilitator, helps the note that medication can be burden on the primary home individual to spell words using a effective and necessary for condi- caregiver, who needs a support keyboard of a typewriter or com- tions that may coexist in children system. puter or other letter display. with PDDNOS, such as attention Facilitation may involve hand- deficit disorder or obsessive com- Other Therapies over-hand support or a simple pulsive disorder. and Treatments touch on the shoulder. The individual with the impairment ini- Parents’ final decision on While exploring the treatment tiates the movement while the whether to use medication as part options available to help children facilitator offers physical support. of their child’s therapy is a per- with PDDNOS, parents and others sonal one and should be respected may come across several therapies Successful anecdotes of Facili- and supported. Medication should that can be used in conjunction tated Communication therapy always be used in conjunction with with traditional ones. When have been reported and published other therapies, and its effects considering one of these other over the past few years. They have should be monitored through therapies for a child, ask questions also provoked considerable

Pervasive Developmental Disorders (FS20) 13 NICHCY: 1.800.695.0285 controversy, because generally they individual through activities that Dietary intervention. Some have not been supported by challenge his or her ability to individuals with PDDNOS have empirical research. It appears that respond appropriately to sensory been found to have food sensitivi- Facilitated Communication has the stimulation. This type of therapy is ties or food allergies. Some parents potential for becoming a useful directed toward improving how an choose to have their children technique for some children with individual’s senses process stimula- evaluated by allergists and, based PDDNOS, particularly those who tion and work together to respond on the testing results, may elimi- are precocious readers and good appropriately. As with other thera- nate or decrease foods to which with other forms of communica- pies, no conclusive research dem- their child shows the most sensi- tion such as computer and signs, onstrates clear progress made tivity. For example, some foods but who also are severely impaired through sensory integration seem to increase hyperactivity and in verbal expression skills. therapy, but it is used in many autistic-like behavior. Eliminating areas. these from the child’s diet has Auditory integration therapy been found to help decrease (AIT). AIT uses a device that The Lovaas method. This method negative behaviors. randomly selects low and high (which is a type of Applied Behav- frequencies from a music source (a ior Analysis [ABA]), developed by Anti-yeast therapy. Often the cassette or CD player) and then psychologist Ivar Lovaas at UCLA, progression of autism and sends these sounds through is an intensive intervention pro- PDDNOS involves unusual behav- headphones to the child. gram originally designed for pre- iors and communication problems school-aged children with autism. arising around the toddler stage, There are anecdotes about the It uses behavioral techniques— when many children are treated positive effects from AIT. Some of molding and rewarding desired with antibiotics for problems such the results that have been reported behavior, and ignoring or discour- as middle ear infections. Antibiot- include diminished sensitivity to aging undesirable actions—to ics can upset the intestinal flora sounds, more spontaneous achieve its goals. Generally, this and possibly cause “yeast over- speech, more complex language method consists of 30 to 40 hours growth.” However, the existence of development, answering questions a week of basic language skills, higher yeast levels in children with on topic, more interaction with behavior, and academic training. autism and PDDNOS could very peers, and more appropriate social Therapy usually consists of 4 to 6 well be coincidence (Dalldorf, behavior. However, significant hours per day of one-on-one 1995). Some parents have found results from a well-designed training, 5 to 7 days a week. Some that giving their child an anti-yeast treatment study have not been research has shown remarkable medication decreases some nega- available. It is still unclear how AIT progress in about 50% of the tive behaviors. Some preliminary works and whether people benefit children receiving this therapy. The study findings support this type of from it. Lovaas Method is getting wide treatment; however, the results are Sensory integration therapy. attention, but, as with other not conclusive. therapies, it needs more study. Sensory integration is the nervous Summary. Since well-designed system’s process of organizing Vitamin therapy. Some anecdotal studies of these therapies have not sensory information for functional evidence has shown that been conducted, their use. It refers to a normally occur- Vitamin B6 and magne- effectiveness in ring process in the brain that sium help children treating PDDNOS is allows people to put sights, with autism and unclear. sounds, touch, taste, smells, and PDDNOS. The movements together to under- rationale for this is Helping Children stand and interact with the world that Vitamin B6 at Home around them (Mailloux & Lacroix, helps the formation 1992). of neurotransmitters, Parents can use many techniques On the basis of assessment which are thought to malfunction in such and treatments to results, an occupational therapist help their young who has been trained in sensory children (Dalldorf, 1995). child with integration therapy guides an PDDNOS at home.

NICHCY: 1.800.695.0285 14 Pervasive Developmental Disorders (FS20) These techniques should be not know where to begin their emotional and practical help to discussed with other family mem- search for information, assistance, those who are involved with, and bers and the professionals who are and support. Parent groups offer who care about, these special working with the child, so that the parents and families a place to children. individuals close to the child may share information, give and receive employ the same methods. This emotional and practical support, will help the child generalize skills and work as a team to address REFERENCES learned at home to other settings, common goals. American Psychiatric Association. such as at school and in the com- (1994). Diagnostic and statistical munity. Parents can work at im- Autism parent support groups are located throughout the coun- manual of mental disorders (4th ed.). proving communication skills and Washington, DC: Author. social skills. See the “NICHCY try. Families whose child has Resources...on Autism and PDD” PDDNOS can benefit from joining Autism Society of America. (1995). Asperger’s Syndrome that accompanies this Briefing Paper these support groups. See “Organi- zations” listed below. information package. Bethesda, MD: for publications on techniques to Author. use with children with PDDNOS. CONCLUSION Boyle, T. (1995). Diagnosing FINDING A PARENT autism and other pervasive Children with PDDNOS development disorders [excerpt from SUPPORT GROUP happen to have a unique disorder Autism: Basic information (3rd ed., pp. that will make certain parts of life Children with PDDNOS are 6-7)]. Ewing, NJ: The New Jersey more challenging. For a wealth of Center for Outreach & Services for the not the only ones who need extra information, contact the organiza- Autism Community, Inc. (COSAC). help and support. Parenting a tions below and visit the Web sites child with special needs is a de- Dalldorf, J. (1995). A pediatric we’ve listed. We also offer a sepa- manding task. Learning and ac- view of the treatment options for the rate “NICHCY Resources...on autistic syndrome. Chapel Hill, NC: cepting that a child has a disability Autism and PDD,” which lists Division TEACCH (Treatment and is a very emotional process. Ini- books, articles, videos, and parent Education of Autistic and Related tially, parents may feel alone and materials on this disability. Communication Handicapped Children). Learning more about the Mailloux, Z., & Lacroix, J. special needs of children with (1992). Sensory integration and PDDNOS can be of enormous autism. Torrance, CA: AYERS Clinic. Moeschler, J., Gibbs, E., & Graham, J., Jr. (1990). A summary of ORGANIZATIONS medical and psychoeducation aspects of Rett Syndrome. Lebanon, NH: Clinical And try these Web Sites! Genetics and Child Development Asperger Syndrome Coalition of Center. the United States, Inc. (ASC- Autism Coalition U.S.), 2020 Pennsylvania Ave., www.autismcoalition.com/ Prizant, B. M., & Rydell, P. J. NW, Box 771, Washington, DC (1993). Assessment and intervention 20006. Telephone: 1-866-427- Autism Patient Center considerations for unconventional 7747. Web: www.asperger.org www.patientcenters.com/autism/ verbal behavior. In J. Reichle & D. Wacker (Eds.), Communicative Autism Society of America, 7910 Autism-PDD Resources Network alternatives to challenging behaviors Woodmont Avenue, Suite 300, www.autism-pdd.net/ (pp. 263-297). Baltimore, MD: Paul H. Brookes. Bethesda, MD 20814. Telephone: 1- Division TEACCH: www.teacch.com/ 800-328-8476. Web: www.autism- ZERO TO THREE: National society.org Indiana Resource Center for Autism Center for Infants, Toddlers, and www.iidc.indiana.edu/irca/ International Rett Syndrome Families. (1994). Diagnostic Association, 9121 Piscataway Road, National Institute of Child Health and Classification of Mental Health and Clinton, MD 20735. Telephone: Human Development Developmental Disorders of Infancy 1-800-818-RETT; (301) 856-3334. www.nichd.nih.gov/publications/ and Early Childhood. Washington, DC: Web: www.rettsyndrome.org pubskey.cfm Author.

Pervasive Developmental Disorders (FS20) 15 NICHCY: 1.800.695.0285 NICHCY’s Briefing Papers are published in response to questions from individuals and organizations that contact us. NICHCY also disseminates other materials and can respond to individual requests for information. For further information or assistance, or to receive a NICHCY Publications Catalog, contact NICHCY, P.O. Box 1492, Washington, DC 20013. Telephone: 1.800.695.0285 (Voice/TTY) and 202.884.8200 (Voice/TTY). You may also e-mail us ([email protected]) or visit our Web site (www.nichcy.org), where you will find all of our publications. NICHCY thanks our Project Officer, Dr. Peggy Cvach, at the Office of Special Education Programs, U.S. Department of Education. We would also like to thank the reviewers who were involved in the original preparation of this publication: Gail Bornfield, Ph.D.; Linda Felini-Smith, Ph.D., psychologist; Susan Goodman, attorney and parent; Frank Robbins, Ph.D., Quabbin Valley Educational Consultants; Vivian Sisskin, M.S. CCC, speech and language pathologist; Judy E. Wade, teacher; and Mary Wolf, parent. The editor would also like to thank Donna Waghorn, Assistant Director of NICHCY, for her guidance in developing this publication. Director ...... Suzanne Ripley Assistant Director ...... Donna Waghorn Editor ...... Mary Kate Gutiérrez Author ...... Luke Y. Tsai, M.D. Professor of Psychiatry and Pediatrics Director, Developmental Disorders Clinic University of Michigan Medical Center This information is copyright free. Readers are encouraged to copy and share it, but please credit the National Dissemination Center for Children with Disabilities (NICHCY). Please share your ideas and feedback with our staff by writing to the Editor.

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