About Autism

Introduction to Pervasive Developmental Disorders The Pervasive Developmental Disorders Umbrella Autism Asperger’s Disorder PDDNOS Final Word About the Diagnosis About the Author You probably never heard the phrase “Pervasive Developmental Disorder” until a professional used it when describing your own child. The general population has little knowledge regarding these children and adults, and even professionals who have specialized in this field for many years are gaining new information every day. Try not to be overwhelmed by all the terms and jargon; rather, keep focused upon your child’s needs and abilities while learning as much as you can through reading and talking to other parents or professionals.The key word when understanding Pervasive Developmental Disorders is “”disorder.”” In comparison to other children with developmental delays, a Pervasive Developmental Disorder reflects a disordered developmental trend. Whereas an eight-year old child with mental retardation may function at the level of a three-year old child across a broad spectrum of skill areas (e.g., social, language, motor), a child with a Pervasive Developmental Disorder will show notable peaks and valleys both across and between developmental areas. An example of a child who exhibits different developmental abilities across skill areas may show clear strength in the area of motor development and coordination, but demonstrates no recognition or attachment to family members. An example of disordered development within agiven skill area would be a child who can label all types of foreign and domestic cars but not be able to hold a simple conversation. The unusual array of strengths and weaknesses inherent to Pervasive Developmental Disorders can be especially difficult for parents because they repeatedly wonder, “”If she can do this, why can’t she do that?”” The sequence in which your child learns various skills may seem confusing and “”wrong;”” however, try to merely recognize, appreciate, and build upon your child’s relative strengths rather than trying to understand the unique learning development of a child with a Pervasive Developmental Disorder.Although children with a Pervasive Developmental Disorder will show relative peaks and valleys in development, the three major areas of concern inherent to any Pervasive Developmental Disorder are social skills, language development, and the presence of stereotyped behavior, interests, and activities. When determining how these diagnostic criteria relate to your own child, keep in mind that there is a wide variation within all children who have been diagnosed as having a Pervasive Developmental Disorder. While one child with autism may be completely nonverbal and spend most of the day engaged in repetitive behaviors, another child who is also labeled autistic may be able to participate in a relatively sophisticated conversation and show minimal stereotypic behaviors.Another general characteristic across the three Pervasive Developmental Disorders discussed in this chapter is that the onset of symptoms needs to be apparent at a very early age (e.g., before approximately age three). Parents often do not recognize these symptoms at first, especially if the child with a Pervasive Developmental Disorder is their first child. For example, they may report, “”He was a wonderful baby. He never cried to be picked up,”” or “”She was always so careful, lining up her blocks over and over.”” However, upon retrospect, parents frequently begin to recognize the signs which had been evident all along but became more apparent as the child grew older. The first “”red flag”” for many parents is a delay in speech development, and their first step is often tohave the child’s hearing tested to rule out a hearing impairment. As more professionals are contacted and the child’s developmental history is assessed more carefully, a diagnosis of one of the Pervasive Developmental Disorders is eventually obtained.An important point to be made regarding Pervasive Developmental Disorders is that they are clearly organically-based. In contrast to old-fashioned and unproven notions that parents “caused” these disorders, more recent research has indicated that the neurological system, biochemical makeup, genetic material and/or brain structures of these individuals are often different as compared to typically developing children and adults. Although there are no definitive answers or consistent physiological underpinnings yet, many research studies continue to address the question of etiology with the hope of leading to both prevention and treatment strategies for the future. The most important theme for you to remember is that parents are not the cause. Back to top Although the American Psychiatric Association has defined five subcategories within the general heading of Pervasive Developmental Disorders, the present chapter will be limited in scope to describing three: autism, Asperger’s Disorder , and Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS) as these are the most common types of Pervasive Developmental Disorders. For your knowledge, the other two subcategories are Childhood Disintegrative Disorder and Rett’s Disorder. Back to top The term “autistic” was first coined in the 1940’s by a man named Leo Kanner. He began to see a pattern of behaviors in some of the children he treated and felt that they constituted a separate psychiatric disorder. Although his diagnostic criteria have been modified to some extent through the years, the emphasis upon social and language deficits as well as repetitive stereotypic behaviors was reported within Kanner’s observations. Autism can occur in any family. Although it was once thought that autism occurred in families where both parents worked and were relatively affluent, this contention has since been abandoned. Generally speaking, the frequency of autism is 1 in 500 births. The ratio of boys to girls is approximately 4:1. Autism is often coexistent with mental retardation. When there is one child with autism in the family, the chance of having another child with autism or another type of communication disorder is heightened; however, most siblings of individuals with autism show normal development.As with any Pervasive Developmental Disorder, the major areas of concern with autism are poor social skills, limited communication development, and a limited repertoire of interests and activities. In terms of social skills, children and adults with autism may show minimal ability to respond to family members in a preferential manner. This tendency is often difficult for parents who feel “”rejected”” by their child. Remember that this inability is not a choice on your child’s part, but rather a reflection of autism. Another common characteristic of social interactions in an individual with autism is limited development of friendships and peer-to-peer play activities. Individuals with autism often play by themselves and rarely initiate interactions with peers. A third example of poor socialskills would be children or adults who rarely attempt to share items of interest with others. In contrast to typically-developing children who frequently bring toys or objects to show their parents, children with autism do not seem to be motivated to do so.The second major area of concern in individuals with autism is difficulty with both receptive and expressive communication. Speech acquisition is often delayed if it develops at all, and many children and adults with autism show unusual speech patterns such as echolalia (repeating words which are spoken by others), pronominal reversal (referring to themselves as “you” instead of “I”), and perseverative speech (repeating the same words or sounds in a noncommunicative fashion). Although a given individual may have the vocabulary to hold a conversation, he or she may be unable to do so. The third diagnostic area for autism is restricted and stereotyped patterns of behavior, interests and activities. For example, an individual with autism may become overly upset if routines are changed even slightly. Another person with autism may collect hundreds of samples of an unusual item (lint, broken pieces of china) but show no interest in more typical hobbies. A third example of this diagnostic category would be an individual who spends a great majority of time engaged in self-stimulatory behaviors (e.g., rocking, staring at his fingers, flipping blinds). Back to topIn 1994, the American Psychiatric Association’s Diagnostic Statistical Manual-Fourth Edition (DSM-IV) added a new subcategory of Pervasive Developmental Disorders: Asperger’s Disorder . Before describing the diagnostic criteria for Asperger’s Disorder, let us review what knowledge exists regarding demographic patterns and general characteristics. Most individuals with Asperger’s Disorder do not show the cognitive deficits as evident in someone with autism. Language development is rarely delayed and in fact expressive speech is within the normal range. Unfortunately, since the disorder is relatively new there is limited research regarding the incidence of Asperger’s Disorder . Similarly, little is known regarding any familial patterns, although it does appear that there is an increasedchance of more than one family member having Asperger’s Disorder.” “Generally speaking, the diagnostic criteria for Asperger’s Disorder are equivalent to those listed for autism with the exception of delays and peculiarities in language development. Individuals with Asperger’s Disorder show marked impairment in social interactions such as poor relationships, lack of spontaneous sharing of items of interest, and more subtle aspects of human interaction such as eye contact and use of gestures. They also demonstrate the types of repetitive and stereotyped behaviors which are evident in autism, as well as a restricted range of interests and insistence on following certain routines and rituals without modification. It is not uncommon for young children with Asperger’s Disorder to remain undiagnosed until they are five years old or older due to their normal speechdevelopment.Many individuals with Asperger’s Disorder are able to eventually lead relatively independent lives. Due to the absence of cognitive impairment, many hold competitive employment and can live in a supervised apartment setting or even independently. However, the social “quirks” and ritualistic behaviors may persist throughout their lifetime which may in turn hinder their personal relationships. Back to top Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS) is a subcategory of Pervasive Developmental Disorders which in many ways ends up being somewhat of a catch-all group for “autistic-like” individuals. As with all Pervasive Developmental Disorders, the major areas of concern are social and language development as well as stereotyped behaviors. In contrast to other subcategories of Pervasive Developmental Disorders, however, PDDNOS does not list specific, detailed behavioral characteristics which must be present for a diagnosis. Instead, PDDNOS is a diagnostic category defined by the absence of sufficient symptoms to warrant one of the other Pervasive Developmental Disorder categories. As a consequence of these rather vague diagnostic criteria for PDDNOS, it is difficult for professionals to agree when diagnosing these children. Parents are often confused and frustrated when their child is labeled as “autistic” by one professional and having “PDDNOS” by another. Some professionals and parents have proposed that autism be divided into gradations of severity, such that classically autistic individuals be defined as having “severe” autism while individuals who would currently be labeled PDDNOS be diagnosed as having “mild” autism. One of the difficulties about having a child with PDDNOS is the lack of information and literature which is available to parents. If your child has been diagnosed as having “PDDNOS,” it is important to recognize that much of the literature which is available regarding autism may very well be relevant to your child. Your best bet is to modify any strategies which are presented in these “how-to” books according to your own child’s developmental and behavioral profile rather than waiting for information which is specific to children with PDDNOS. Back to top It is important to keep in mind that all Pervasive Developmental Disorders are diagnosed purely through behavioral characteristics. As of this writing, there are no blood tests, MRI, EEG, or other physiologically-based format for confirming a diagnosis. As a consequence, there is certainly room for subjective interpretation of the behavioral descriptions listed in diagnostic tools. Therefore, if your child has only recently been diagnosed as having a Pervasive Developmental Disorder, it makes sense to seek a second opinion so you can be assured that the diagnosis is valid. Regardless of the final diagnosis, attempt to see your child as a child first and a child with a Pervasive Developmental Disorder second. Back to topAbout the Author:  Carolyn T. Bruey, Psy.D. received her doctorate in psychology from Rutgers University Graduate School of Applied and Professional Psychology in 1982. She has worked with children and adults with Autistic Disorder for more than twenty years. Her professional experiences related to Autistic Disorder include being the Coordinator of Training and Evaluation for the Teaching Family Homes for Autistic Children, as well as the Program Coordinator for four group homes for children with Autistic Disorder. She served as the supervisor for the Assistant Director of The New Jersey Center for Outreach and Services for the Autism Community, Inc., as well as being a board member for this agency for many years. Publications include “”Daily Care ofYour Child with Autism”” in the book Children with Autism: A Parent’s Guide and the recently published “”Demystifying Autism Spectrum Disorders:  A Guide to Diagnosis for Parents and Professionals.””  She is currently the Managing Partner of Developmental Disabilities Resources in Lititz, PA., an agency which provides psychological services and training to individuals with developmental disabilities, their families, and direct care staff.