chapter 1
What Are High-Functioning Autism Spectrum Disorders?
DOI: 10.4324/9781003237860-1
Being eccentric or unusual has become increasingly more acceptable. From the awkwardly entertaining character of Sheldon on the TV show The Big Bang Theory, to the increasing appearance of bookish personalities in all aspects of popular culture, we are becoming more comfortable with members of our community who were seen in recent times as odd. Recently, the word geek, initially a derogatory term, has become a humorous, culturally descriptive term for persons who are far more interested intellectually in technical data and activities than they are skilled in working with people. Now there are computer consultation groups and individuals who rent out their services, such as Best Buyâs âGeek Squad.â
Pictured wearing pocket protectors and heavy horn-rimmed glasses, these same people were called ânerdsâ just one or two decades previously. When technology was somewhat less sophisticated, these same individuals sported slide rules in leather pouches on their belts. This image of the socially inept âtechieâ refers to a continuum of persons who lack the ability to read social cues or manage complex relationships, including the complex Western game of dating.
More recently, it has been suggested that social skill deficits are more than a difference or an eccentricityâthey can fall into a disability classification requiring special supports. This occurs when the so-called âgeekinessâ shares characteristics of high-functioning autism spectrum disorder, which has also been called Aspergerâs syndrome. In fact, there are lots of different terms that have been applied to this group. In this book, we will generally use the term HFASD to capture both the autism symptoms and the strong intellectual abilities of this group. When referring to all individuals with autism, we will use the abbreviation ASD and when referring to specific past studies or investigations conducted with children identified as having Aspergerâs syndrome, we will use that term. In brief, HFASD is characterized by poor social skills, inflexibility, and overfocused interests, which can occur despite normal intelligence, vocabulary, and grammar skills. Hans Asperger, the Viennese psychiatrist who first identified this disorder, described âlittle professorsâ who could be highly successful professionally and had a lot to offer society, but needed specialized education to succeed.
History of HFASD
In order to better understand children with HFASD, itâs helpful to know some of the history behind the discovery of Aspergerâs syndrome as a disorder and the research and treatment that has followed. The term autism was first used by Dr. Eugen Bleuler (1857â1939) to identify extreme egocentrism or a shutting off of relations between the individual and others. The discovery of the group of people we now consider as having HFASD is attributed to Hans Asperger (1906â1980), who, after working with hundreds of children, reported on a study of four boys, ages 6 to 11, in Vienna in 1944. Asperger identified a pattern of behavior and abilities in these boys that he originally called âautistic personality disorders in childhood,â and later referred to as âautistic psychopathy,â meaning âself-personality disease.â Autistic psychopathy was for Asperger a constitutionally given personality type. He noted that almost all of the children were boys and all had at least one parent, usually the father, with a similar, but less extreme, set of traits. Asperger (1944) observed the following traits: little ability to form friendships, conversation that was one-sided, intense absorption in a special interest, and clumsy physical movements.
Asperger developed a strengths model of the children, whom he identified in this group as having âautistic psychopathyâ (Frith, 1991). He deemphasized their weaknesses, believing that their strengths would carry into adulthood. One example he noted was a child named Fritz V. True to Aspergerâs expectations, Fritz did manifest his strengths into adulthood and became a professor of astronomy, solving an error in Newtonâs work that Fritz first had discovered as a child. Asperger was a pioneer in the education of his subjects, opening a school for this group of children near the end of World War II. Sadly, the school was bombed and demolished. This may have contributed to further delays in the spread of Aspergerâs findings, as much of his work was destroyed.
It has been speculated that Asperger may have possessed aspects of the condition later named after him by Lorna Wing, a British researcher. He himself was an isolated child who found it difficult to make friends. He had a seemingly obsessive interest in an Austrian poet, and he repeatedly recited passages from the poetâs works to his classmates, who did not share his enthusiasm for the material.
Asperger wrote in German and his work was not frequently translated into other languages. It was not until the publication of âAspergerâs Syndrome: A Clinical Accountâ in 1981 by Wing in the journal Psychological Medicine that Aspergerâs work was widely known in the United States. Wingâs study of 35 individuals aged 5â35 introduced Aspergerâs work to the English-speaking world. In her paper, Wing dropped the term autistic psychopathy, because it was seen as stigmatizing and suggestive of voluntary antisocial actions in the individuals described by the label. In 1991, Aspergerâs work was translated into English 47 years after his original publication.
Dr. Leo Kanner, often referred to as the father of child psychiatry, was working with children on the autism spectrum at Johns Hopkins University in Baltimore, MD, around the same time Asperger was conducting his study. Kanner and Asperger initially had no knowledge of each other and, when they did, they corresponded briefly, but believed that they were working with two very different kinds of children. Kannerâs subjects were more severe, with a broader range of symptoms, and often were less verbal and had lower IQ scores than those children described by Asperger. Kanner first described the children he was working with as having âautistic disturbances of affective contactâ (1943), which he later referred to as early infantile autism (Kanner & Eisenberg, 1956). Kanner placed autism within the categories of schizophrenia, and other psychoanalysts most frequently attributed the cause, although unknown, to ârefrigeratorâ mothers who lacked the ability to demonstrate affection to their children and who may have, consciously or unconsciously, been rejecting them. During this time, parents not only had to adjust to the challenge of rearing a child with autism, they also were made to feel guilty that their childâs disabilities were the result of poor parenting.
Whereas Aspergerâs work received little attention before the 1980s, Kannerâs work became accepted internationally, and autism was generally thought to be an emotional disturbance related to schizophrenia or a form of intellectual disability. Consequently, until the 1980s, children were usually not considered to have autism unless they also had deficits in intelligence and language skills. Over the last several decades there has been a growing awareness both of the biological causes of autism (genes and brain differences) and of the wide spectrum of language and intellectual abilities that people with autism can have. These changes had a major impact on the rules for diagnosing autism in the mental health practitionerâs guidebook, the American Psychiatric Associationâs Diagnostic and Statistical Manual of Mental Disorders (DSM), the fourth edition of which was published in 1994 (and had a text revision in 2000). The DSM-IV introduced the diagnosis of Aspergerâs syndrome, and the idea that a person could have high-functioning autism gained traction. Aspergerâs syndrome and high-functioning autism were thought to be two distinct disorders, both characterized by normal intelligence, social skills problems, and repetitive behaviors, but distinguished from each other based on language development. Basic language skills (vocabulary, grammar, understanding) were considered intact in Aspergerâs syndrome throughout development, but impaired in high-functioning autism. However, studies conducted throughout the 1990s and early 2000s generally failed to find a meaningful difference between the two conditions as they were defined in the DSM-IV (HappĂ©, 2011). Furthermore, different, well-respected autism clinics across the nation did not make the diagnoses in a consistent manner. Even when using gold standard diagnostic tests, different clinics and autism teams came to different conclusions about who had high-functioning autism and who had Aspergerâs syndrome (Lord et al, 2012).
How Are Autism Spectrum Disorders Currently Defined?
In order to address these problems, the newest diagnostic guidelines, just published as the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5; APA, 2013), have removed the different subcategories within autism, including Aspergerâs syndrome and Pervasive Developmental Disorder, Not Otherwise Specified. Now clinicians are instructed to make one diagnosis, autism spectrum disorder, for all people who have problems with social communication and social interaction, and have restricted, repetitive, and inflexible behaviors. The diagnosis of ASD is then qualified by a description of language abilities and intelligence. For example, a person who previously received an Aspergerâs diagnosis would probably be diagnosed with ASD âwithout accompanying intellectual or language impairment.â This simplification makes sense because the previous subcategories of autism, such as Aspergerâs, were not clearly defined or consistently applied. The rules for distinguishing Aspergerâs syndrome from autism were unclear, so that even the most careful clinicians in different clinics could give the same child different diagnoses. It is also an improvement because it releases diagnosticians from imposing categorical distinctions such as Aspergerâs versus high-functioning autism on a disorder that occurs on a spectrum as opposed to in discrete categories (Constantino & Todd, 2003; Szatmari, 2000).
On the other hand, it is confusing and upsetting for a lot of people who have grown up with the Aspergerâs diagnosis, attended Aspergerâs school programs, and made friends on Aspergerâs-related social networks to suddenly have this term removed. It is important that high-functioning individuals with an autism spectrum disorder and their families are able to use the term that they think fits best, and many families and programs may continue to use the term Aspergerâs syndrome. For the purposes of clarity, however, this book refers to autism spectrum disorders (ASD) generally and high-functioning autism spectrum disorder (HFASD) specifically to indicate the presence of social deficits and repetitive, inflexible behaviors in a person with normal or high intelligence and good basic vocabulary, sentence structure, and comprehension of language.
To complicate matters further, the most recent diagnostic guidelines (APA, 2013) also introduced a new language disorder: Social Communication Disorder. It describes people with similar social communication problems and social reciprocity deficits as are seen in ASD, but without repetitive, inflexible behaviors. Recommendations and treatments suggested in this book and elsewhere for HFASD that target social issues may also be appropriate for people diagnosed with Social Communication Disorder. On the other hand, those targeting inflexibility should not be needed for a person with Social Communication Disorder, if that diagnosis has been accurately made.
Another change in the diagnostic rules is that clinicians are now allowed to make a diagnosis of Attention Deficit/Hyperactivity Disorder (ADHD) in a person who is also diagnosed with an ASD. In the DSM-IV, that was not technically allowed. This is a major improvement, because about one third of children with HFASD also have ADHD, and more than half of children with HFASD have problems with attention and impulse control even if they donât meet the full criteria for ADHD (Leyfer et al., 2006). The presence of ADHD symptoms in addition to ASD means that specific accommodations and treatments for attention and impulse control may be helpful in addition to the accommodations and treatments suggested for the social communication and flexibility problems associated with ASD.
How Do Schools Define Autism Spectrum Disorders?
As you will read below, many of the important interventions and treatments for HFASD occur in schools. Separate from a clinical diagnosis, students must be identified with an educational disability in order to qualify for special education services. This identification is governed by federal law in the Individuals with Disabilities Education Act (IDEA) of 1990, which was revised in 1997 and 2004. This law and its ramifications will be discussed in detail in Chapter 7. School districts only have one special education eligibility classification available for autistic spectrum disorder, so the recent changes in clinical diagnostic rules may not change how schools define autism for the purposes of special education. There is a risk, however, that some students who would have previously received a clinical ASD diagnosis and educational autism disability classification, could now be given a Social Communication Disorder diagnosis and the educational classification of a speech/language disability.
How Common Are Autism Spectrum Disorders?
The Centers for Disease Control and Prevention (CDC, n.d.) launched the Autism and Developmental Disabilities Monitoring Network in 2000, which aims to get the most accurate statistics possible on the prevalence of ASD by collecting information on thousands of children from schools, medical clinics, and social service providers. The CDC has reported a 78% increase in ASD between 2002â2008, and that between 1%â2% of children in the United States has autism or a closely related disorder (CDC, 2012). It is important to understand that this estimate is based on a survey of only 14 U.S. states and may not reflect the true prevalence of autism because the CDC count is not based on in-person clinical exams but on expert review of school and clinical reports for key words that suggest a diagnosis of ASD. Even with these caveats, it is clear that autism is an urgent public health issue and a major concern, as reported by Dr. Yeargin-Allsopp, chief of the developmental disabilities branch of the CDC (n.d.). The most recent CDC findings indicate that five times as many boys are affected by ASD as girls and the majority (62%) of children identified with ASD do not have intellectual disability. Although more White than Black or Hispanic children are identified as having ASD, this is thought to reflect underidentification in minority groups related to lack of services instead of a true difference in prevalence (CDC, 2012; Durkin et al., 2010).
One of the most prominent questions surrounding ASD at this time is: âIs there really a rise in the disorderâs occurrence and, if so, why?â The answer turns out to be complex and not yet fully understood. There was an almost tenfold increase in measured prevalence of ASDs throughout the 1980s and 1990s (see Fombonne, 2003, for a review) that appears to have been primarily related to increases in awareness of autism and expansion in the types of children who received the ASD diagnosis. As more high-functioning children were identified as having ASD, and some lower functioning children were shifted from intellectual disability to autism classifications, it was only natural for the total number of children diagnosed with autism to increase. Furthermore, as more pediatricians, therapists, teachers, and parents became aware of autism as a result of expanding autism screening requirements, news coverage, and research, more children were referred for and received autism diagnoses. From this perspective, the increasing prevalence of ASD is a good thing because it means that more children who have ASD are getting identified and receiving treatment.
As the numbers of children diagnosed with ASD have continued to rise, however, speculation has spread through the popular press about an âepidemicâ of ASD. Although it is not an epidemic in the sense of malaria or polio, some scientists do believe that there actually are increasing numbers of cases of ASD, as opposed to just better identification of those who have the disorder. A variety of explanations are offered for why this might be happening. Some point to population centers where high-tech communities have arisen (e.g., Silicon Valley) and where âgeeksâ marry âgeeks,â and give birth to increasing numbers of children who have ASD. Dr. Simon Baron-Cohen has hypothesized that people with systemizing brains are finding each other and creating a genetic predisposition toward producing higher rates of HFASD in their offspring (Morton, 2001). Others researchers emphasize social trends, such as older parents having children, which can increase the risk of having children with autism (Hultman, Sandin, Levine, Lichtenstein, & Reichenberg, 2010). Regardless of the cause, there are more children now than ever before who are diagnosed with ASD. This has caused school systems to adjust rapidly to implement effective supports and interventions for these students.
What Causes Autism Spectrum Disorders?
Autism is highly heritable, as demonstrated by the fact that if one monozygotic (identical) twin has ASD, then his or her twin has a very strong chance of also having ASD (Geschwind, 2011). Because heritability is much lower in dizygotic (fraternal) twins, who do not share exactly the same genes like monozygotic twins do, we know that there is a very strong genetic influence in ASD. That does not mean that there is a simple genetic abnormality that is identified as causing all, or even most, cases of ASD. One of the striking aspects of ASDs is how different, or heterogeneous, people with ASD are. For example, there is no other developmental disorder in which intelligence routinely ranges from profoundly impaired to very superior, or in which language abilities range from no verbal ability to the remarkable verbal gifts of writers like John Elder Robison. Hence the popularity of this statement, made by self-advocate and university professor Stephen Shore, at a conference once: âIf youâve met one person with autism, youâve met one person with autism.â The variability in presentation of ASD is also reflected in its etiology, or what causes it. Some scientists talk about the âautismsâ to emphasize that there may be different disorders with different biological profiles that we are lumping together as ASD. Only about 10% of children who are diagnosed with an ASD have a known genetic syndrome, like Fragile X, or tuberous sclerosis (Zafeiriou, Ververi, Dafoulis, Kalyva, &Vargiami, 2013). For all of the other cases of ASD, the genetic contribution is much more complicated. There are more than 200 genes that can contribute to the risk of having autism, but which particular genes are related to autism in a particular individual is variable (Persico & Napolioni, 2013). In many cases, there are a number of genes that interact to cause the disorder. So there is no simple ...