Asperger’s syndrome is a developmental neurobiological disorder that is usually diagnosed in children after age three, characterized by severe deficits in social interactions and communicative abilities, and strange behaviors. The disorder falls under the umbrella term of autism spectrum disorders, which also includes five similar disorders, including autism, and pervasive developmental disorders not otherwise specified. Hans Asperger, a Viennese child psychologist, published the first definition of this disorder under the name of “autistic psychopathy.” From there, other psychologists and researchers were able to expand upon his definition.
Understanding Asperger’s history, especially the progression of perceptions people have had of it at different points in history, can help illuminate its current state and provide a basis for future discoveries on its treatment and management. One example of a current misconception is what some lay groups call an autism “epidemic.” One leading autism researcher, Morton Ann Gernsbacher, has strived to dispel this term by encouraging the public to think more critically and consider all facts, and not just feed right into the hands and sway of researchers pushing their own agendas. This all shows how societal standards and perceptions of a disease can change with the times, and how being able to differentiate these changes from actual biological and epidemiological changes is crucial.
Asperger’s was certainly around long before it was given an official name. In 1926, a Russian neurological assistant named Eva Sucharewa wrote a paper referring to the “Schizoid Personality of Childhood” which was about the behaviors of six boys and their habits that eventually was realized to strongly resemble what Hans Asperger would later note in his studies (1). Hans Asperger published the first definition of this disorder in 1944. He described the patterns he observed in his young subjects as “a lack of empathy, little ability to form friendships, one-sided conversations, intense absorption in a special interest, and clumsy movements” (1). Asperger would also describe his subjects as “little professors” because of their ability to talk about their favorite subjects in intense detail. He believed these special abilities and interests would aid them in their later lives. Asperger had a very positive outlook on the quirky and strange behaviors of his young subject. It was also known that Asperger, as a child, exhibited many of the same traits he was studying. He was described as a remote and lonely child who had difficulty making friends, a special talent in language, liked to recite poetry to his uninterested classmates, and referred to himself in the third person (1).
Around the same time Asperger was observing his subjects and describing what we know today as Asperger’s syndrome, Leo Kanner, an Austrian born psychologist in the United States was making progress towards discovering infantile autism. However, autism was much more widely known in the world during this time than Asperger’s work because Kanner wrote his work in English. Asperger had done all his work in German and it was not spread outside of Germany and Austria until the 1990s when an English developmental psychologist named Uta Frith translated Asperger’s work. The person who actually coined the term Asperger’s syndrome was Lorna Wing, another british researcher who wrote about Asperger’s in her 1981 paper, Asperger’s Syndrome, A Clinical Account.
What defines Asperger’s syndrome has become more complete over the years and better understood as more research is done. Individuals who have Asperger’s exhibit symptoms that range from light to severe. They have a marked deficit in social skills and nonverbal communication skills but their deficits are more subtle and their intellectual and language abilities are better than those with classical autism. Asperger’s is often known as “Autism Light.” Asperger’s syndrome patients usually show no delay in language development and do not have significant cognitive deficits. More boys than girls tend to have the syndrome. Children with autism are usually not diagnosed until after age three because their symptoms are often masked by good cognitive and verbal skills. Asperger’s can also be comorbid with anxiety and depression.
The autism spectrum disorder umbrella term extends to five different disorders including Asperger’s, classical autism, Rett’s disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified (PDD-NOS). There has been debate as to where Asperger’s fit in the spectrum. Some professionals feel Asperger’s is a higher-functioning form of autism while others felt it is better described as a nonverbal learning disability. Asperger’s also shares a lot of the same characteristics with PDD-NOS. Before the DSM IV officially defined Asperger’s in 1994, a lot of individuals were diagnosed with the wrong disorder or remained undiagnosed since so many of these disorders overlap and are not clearly distinguished (2). The previous lack of a solid definition of Asperger’s made it difficult for researchers to interpret each others’ data, allowed clinicians to use the label of Asperger’s based on their own interpretations or misinterpretations, and often left parents confused with the diagnosis they were getting. This made proper treatments and interventions difficult (3).
But even after Asperger’s was officially defined in the DSM IV, research is still limited and all of it that is out there needs to be evaluated with a critical eye. Society is left wondering what the true nature of this disability is, how many people it actually affects, and what we can do to best help the affected people. It is also important to remember that any diagnostic label cannot summarize a person; all of an individual’s strengths, weaknesses, genes, and environment must be taken into consideration to provide an adequate form of treatment and intervention (3). However, none of these critical aspects that need to be considered in a good diagnosis stops some people and researchers from skewing their data to support their own biases and pushing their agendas even if it does more harm than good.
In 2005 a leading autism expert, Morton Ann Gernsbacher at the University of Wisconsin, Madison, wrote a compelling article addressing the ridiculous notion that autism is becoming an epidemic in today’s society and how this notion has been put forth to society by some lay groups who conveniently left out relevant information to prove a point. Gernsbacher makes the strong argument against this claim that there are three primary sources of misunderstanding and misinterpretation of data that has led people to believe that autism is becoming an epidemic. The lack of awareness about the changing diagnostic criteria is a major contributing factor. The blind acceptance of the results and illogical conclusion drawn from one study as well as inattention to a crucial feature of the “child count” data reported annually by the U.S. Department of Education are two other points Gernsbacher attributes to this public misdirection of information (4).
Autism did not enter the DSM III until 1980, 40 years after Leo Kanner first categorized the disorder. Its description has been modified throughout the years. Originally when it was first entered, there were six mandatory criteria that had to be met to be diagnosed with autism. Currently the DSM IV only requires that eight of the sixteen optional criteria be met to be diagnosed. The phrasing of the current DSM which was first introduced in 1994 is also more inclusive than the more severe phrasing of the 1980 version (4). The earlier 1980 DSM III also only had two diagnostic categories (infantile autism and childhood onset pervasive developmental disorder) while the 1994 DSM IV has five categories, which fall under the autism spectrum disorder umbrella. Asperger’s actually did not enter the DSM until 1994. In order to be diagnosed with Asperger’s, only two thirds of the optional eight criteria need to be met. PDD-NOS, which entered the DSM in 1987, only requires subthreshold symptoms (4). Asperger’s and PDD-NOS actually account for nearly seventy-five percent of all current diagnoses of autism disorders. Some psychologists and historians have even done retrospective studies where they concluded that well known people like Bill Gates, Isaac Newton, Lewis Carroll, and the likes would have been diagnosed with an ASD had they been subject to current DSM IV criteria (4). This is all solid evidence for the broadening of DSM IV criteria, one of the true contributing factors to the seemingly increasing number of cases of autism.
The second source of misunderstanding stems from a California study commissioned by the University of Medical Investigation of Neurodevelopmental Disorders Institute. The purpose of the study was to figure out whether the increase in cases of autism could actually be attributed to the loosening and changing of the DSM criteria. The researchers examined two groups of children who received services from the CA department of developmental services, one group born between 1983 and 1985, around the same time that autism first entered the DSM and the second group born between 1993 and 1995, around the time that the newer criteria came out. They concluded that the increase in autism cannot be explained by the loosening of the criteria used to make the diagnoses (4). But upon closer inspection of how the data is assessed, it is revealed that both groups of children were assessed using the new DSM criteria. Of course there was no change because the newer criteria is broader. A more effective way of assessing whether or not the broadening of the DSM criteria was a factor would be to measure both groups according to the more rigid 1980 DSM III criteria. In the case of this study, the conclusion was illogical and misleading, making a case of an autism epidemic when there really is not one.
The third account of misrepresentation of data stems from the “child count” data. This is when schools comply with the Federal Individuals with Disabilities Act (IDEA) by reporting to the Department of Education an annual child count of the number of children with disabilities. IDEA was passed in 1991 and ensures that all children with disabilities are provided with free, appropriate, public education including an individually designed program. In October of 2003 the Autism Society of America sent its 20,000 members a message saying how the most recent (at the time) US Department of Education’s 2002 report to Congress on IDEA revealed that the number of students with autism in America’s schools had jumped an alarming 1.354 percent in the 8 year period from the school year 1991-1992 to 2000- 2001 (4). However the society failed to mention that prior to 1991, there was no child count data of students with autism nor did it even exist as a reporting category. As a result, whenever a new category is introduced, if it is viable, increases in its usage will accrue incrementally and gradually as there is magnified awareness, augmentation, and reallocation of resources (4). This is not to say that there is clear evidence for a rise in the cases of autism. It is about looking at the statistics while keeping in mind the reality of the situation and the full historical background information.
In conclusion to these three counterpoints for dispelling the autism “epidemic,” Gernsbacher tries to encourage the public to be more aware of autism, its history, and the broadening of criteria, and not to blindly accept whatever the most recent research has to say. Some researchers and groups purposely skew their data to push their own agendas and can easily and cleverly mislead the public. That is why it is important for one to think critically and draw ones own conclusions and back it up with concrete knowledge and good reasoning. It is also interesting to question why some groups would even want to make autism out to be an epidemic. Maybe they think by playing to people’s fears it will more effectively make society more aware of the disorder? But it could be doing more harm than good, by being misleading rather than informative. The groups are trying to raise awareness but what good does it do to further stigmatize the disorder by using a misleading and negative term like “epidemic”? Gernsbacher stresses that the apparent rise in prevalence in autism cases due to noncatastrophic reasons like the purposeful broadening of diagnostic criteria and greater public awareness should not diminish societal responsibilities to support individuals with autism nor enthusiasm for further research (4).
1. History of Asperger Syndrome. Available at http://www.asperger-syndrome.me.uk/history.html (9 November 2009).
2. B. Kirby, What is Asperger’s Syndrome (2005) Available at http://www.udel.edu/bkirby/asperger/aswhatisit.html (9 November 2009).
3. A. Klin, F.R. Volkmar, History of Asperger’s Disorder (2007). Available at http://psychcentral.com/lib/2007/history-of-aspergers-disorder/ (9 November 2009).
4. M. A. Gernsbacher, M. Dawson, H. H. Goldsmith, Three Reasons Not to
Believe in an Autism Epidemic. (2005). Current Directions in Psychological Science,14, 55-58.