So, what happened to Asperger’s? And where did all these Hyundais come from?
- Dr. Jack Davenport, PsyD
- Sep 23
- 14 min read
A historical perspective on the diagnostic evolution, social awareness, and rising prevalence of autism spectrum disorder.
About eight years ago, while I was still in graduate school with two kids and a baby on the way, my wife and I decided it was time to trade in our trusty 2000 Volkswagen Jetta. Given our soon-to-be family of five, we were introduced to a subgroup of vehicles that we’d never given much thought to: the third-row SUV. Research assistant salaries being what they were (low), the price slider of our online car searches didn’t have a very wide margin. But one name kept showing up over and over…The Hyundai Santa Fe.
Now, if you were an aficionado of economical Korean SUVs in 2017, you probably knew about this vehicle. We, however, did not. So, with some trepidation, we went to test drive this hitherto unknown automobile and ended up being the proud owners of a 2007 Hyundai Sante Fe with 80,000 miles on it.
Great, you might be thinking, I clicked on a blog post about autism and this guy goes off on a tangent about his used car history. I promise, there’s a method to this madness. You see, though I couldn’t remember having seen a Hyundai Santa Fe prior to buying one, over the next few days of driving it I quickly realized that they were EVERYWHERE. In fact, keep your eyes peeled and you’ll probably see one on tomorrow morning’s commute.
The point is that I had unwittingly been introduced to a cognitive bias known as the frequency illusion, sometimes referred to as the Baader-Meinhof phenomenon.1 In general, a frequency illusion occurs when a person notices a specific concept, word, or product more frequently after becoming recently aware of it. The Hyundais had been there for years -- I bought a 2007, after all -- I’d just never noticed them before. I didn’t even have a reason to look.
What’s Camus got to do with it?
Albert Camus (1913-1960) was a French philosopher and author who won the Nobel prize in literature in 1957. His most famous work, arguably, is his acclaimed novella, The Stranger. Published in 1942, the main character of the novella (Mersault) was depicted as a man alienated from society who demonstrates difficulties with “social and personal communication, an inability to understand what others are thinking, or to detect nuance and nonverbal signals, an apparent lack of feeling and emotion and an inability to emote; he is withdrawn and uncommunicative, but his silence may be interrupted by a disconcertingly tangential, if logical response; and he can be upset unexpectedly, usually by particular environmental stimuli.”2 Later analysis of this text and the circumstances from which it arose rendered evidence that the character was likely based on a friend of the author’s and is considered by some to be the first literary account of what later became known as Asperger’s syndrome.
Surely, it is impossible for Camus to have written his novella with a contemporary psychological perspective in mind. Autism as a discrete diagnostic category had not yet been clinically defined at the time of the novella’s publishing. In fact, it would not be possible for anyone to receive a diagnosis of autism for several more decades. Asperger’s syndrome itself is a unique case, for it did not exist as a diagnosis until 1994, and is no longer included in the diagnostic manual used by psychologists as I write these words.
Thus, we arrive at the central premise of this blog. The diagnostic construct of autism spectrum disorder is a relatively new phenomenon and there is no biological marker which, in isolation, can be used with any degree of diagnostic certainty. As one of my colleagues likes to say, “There’s no blood test for autism.” In the most basic sense, a diagnosis of autism is based on a thorough developmental history and evaluation of the extent to which symptoms exist and impact functioning (more on that later).
However, people with autism have been around for far longer than we have had words to describe the specific behavioral, social, communicative, and sensory characteristics which currently define our understanding of the condition. With rising rates of prevalence being a hot topic of debate and conjecture, it is worth taking a step back to evaluate how the manner in which we think about autism has influenced the frequency with which we see it in our society.
So, what happened to Asperger’s?
The process of classifying and diagnosing mental health conditions has a long and complex history. The origin of what we now think of as psychiatric classification and diagnosis began in the 1800s, and by the latter portion of that century included categories such as mania, melancholia, monomania, and epilepsy.3 For our purposes, it’s worth starting with a primer on the organization largely responsible for how we think about mental health diagnosis today: the American Psychiatric Association (APA). Though it is currently the largest psychiatric organization in the world with nearly 40,000 members,4 the APA started life as the American Medico-Psychological Association. In 1921, this organization changed its name to the APA and published the first classification system of severe psychiatric and neurological disorders for use in inpatient hospital settings.5 At this time, the concept of autism was nowhere to be found as we understand it today.
Readers familiar with diagnostic nomenclature may be wondering how this process intersects with another widespread classification system, the International Classification of Diseases (ICD). The ICD, now in its eleventh edition, pre-dates any diagnostic or record-keeping system created by the APA, and was first utilized in 1893 as the International List of Causes of Death.6 Following World War II, the APA developed a variation of the ICD (then in its sixth edition) called the Diagnostic and Statistical Manual of Mental Disorders (DSM). Whereas the ICD is an encyclopedic classification system which uses medical codes to standardize record-keeping on disease and cause of death,7 the DSM was the first standardized tool specifically intended for categorizing mental disorders with a focus on clinical applications.
Autism in the First and Second Editions of the DSM
The first edition of the DSM was published in 1952 and has undergone revision multiple times since then. It was much shorter than the version we use today, only 130 pages long, and included 106 mental disorders. Compare that to a later version, the DSM-IV, which included descriptions and diagnostic criteria for over 400 disorders across more than 800 pages. But let’s not get ahead of ourselves. In the first edition of the DSM, the term autism “appeared only once, in connection with schizophrenic reactions in young children,”8 and did not include description of the core features we associate with autism today. It was coded as a ‘Schizophrenic reaction, childhood type,’ and described as such:
The second version of the DSM was published in 1968, and the concept of what we would later understand as a distinct neurodevelopmental condition was still presented in association with childhood schizophrenia, as “autistic, atypical, and withdrawn behavior.”8:
A Brief Interlude on Kanner and Asperger
Though not yet included as a distinct diagnostic category in the first two versions of the DSM, the concept of autism was already being observed and described in clinical research by several individuals. Foremost among these individuals was the psychiatrist Leo Kanner, who in 1943 published a landmark study8 describing “11 children, 8 boys and 3 girls, who presented with “inborn autistic disturbances of affective contact”. He emphasized two essential features of the condition: (1) autism—or severe problems in social interaction and connectedness from the beginning of life, and (2) resistance to change/insistence on sameness.”9 Kanner’s observations also included description of stereotyped movements such as body rocking and hand-flapping, which he posited as means by which the child could maintain control of their environment.
Shortly thereafter, in 1944, Austrian physician Hans Asperger published an account10 of “boys who had marked social difficulties, unusual circumscribed interests, and good verbal skills… and reported that fathers of his cases showed similar problems.”9 While the contributions of Kanner and Asperger were foundational to how we conceptualize autism in contemporary psychology, there are salient criticisms of their conclusions in relation to the prognosis and associated medical conditions.9 Additionally, astute readers may note that the early work of Kanner and Asperger tended to focus on how these difficulties present in male children, in Asperger’s case even going so far as to comment on similarities with their fathers. Despite concerns expressed by some in regard to increasing rates of diagnosis, recent research tells us it is also the case that autism has historically been underdiagnosed in women and girls.11
Now, back to our regularly scheduled program.
The DSM-III and Inclusion of Autism Diagnostic Criteria
Published in 1980 (and later revised in 1987) the third edition of the DSM-III included the first standardized framework for diagnosing autism, separate and distinct from its previous association with childhood schizophrenia and psychosis as seen in the first and second editions.12 Codified as ‘Infantile Autism,’ this diagnostic category was groundbreaking for its time. Drawing in part from the work of Kanner and Asperger, it also included reference to social and communicative deficits, as well as atypical responses to environmental settings and resistance to change:
Infantile Autism Diagnostic Criteria:
Onset before 30 months of age
Pervasive lack of responsiveness to other people
Gross deficits in language development
If speech is present, peculiar speech patterns such as immediate and delayed echolalia, metaphorical language, pronominal reversal
Bizarre responses to various aspects of the environment, e.g., resistance to change, peculiar interest in or attachments to animate or inanimate objects
Absence of delusions, hallucinations, loosening of associations, and incoherence as in Schizophrenia
Though many aspects of the Infantile Autism diagnosis are present in later editions of the DSM, the scope of criteria at this time was relatively narrow and thus tended to identify individuals with more severe symptoms. Thus, a significant proportion of individuals who would meet criteria for a diagnosis of autism under later editions of the DSM would not meet criteria based on initial DSM-III criteria. The DSM-III revision provided a significant update to diagnostic criteria, with a revised category of Autistic Disorder which is very similar to the disorder of the same name described below in the DSM-IV.
DSM-IV and Changes in Prevalence
So, as we have seen, up until the late 1980’s the diagnosis of autism either did not exist, was associated with childhood schizophrenia, or tended to identify only more severe forms of the condition. A significant change occurred with the publication of the fourth edition of the DSM in 1994, and its subsequent revision in 2000.13 In addition to the diagnosis of Autistic Disorder, the DSM-IV included several other diagnostic categories under the umbrella of what we now call autism spectrum disorder. This included Pervasive Developmental Disorder, Not Otherwise Specified; Rett’s Syndrome; Childhood Disintegrative Disorder; and, most famously, Asperger’s Syndrome.
In the DSM-IV, a diagnosis of Autistic Disorder required onset of symptoms prior to the age of 3 years in the categories of (1) Qualitative impairment in social interaction; (2) Qualitative impairments in communication; and (3) Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities. Diagnoses of Autistic Disorder were often accompanied by intellectual impairment, as well. The addition of Asperger’s Syndrome provided a different lens on how autism may present in children and adults, as seen in DSM-IV criteria presented below:
299.80 Asperger’s Disorder (or Asperger’s Syndrome)
A. Qualitative impairment in social interaction, as manifested by at least two of the following:
Marked impairment in the use of multiple nonverbal behaviors, such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
Failure to develop peer relationships appropriate to developmental level
a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people).
Lack of social or emotional reciprocity
B. Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
Apparently inflexible adherence to specific, nonfunctional routines or rituals
stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
persistent preoccupation with parts of objects
C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).
E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
F. Criteria are not met for another specific pervasive developmental disorder or schizophrenia.
Note that a diagnosis of Asperger’s syndrome did not require a significant delay in language, cognition, adaptive functioning, nor “curiosity about the environment.” Additionally, individuals need only meet two criteria in section A, and one criteria in section B to qualify for the diagnosis (as well as C, D, E, and F). So, how might this have influenced rates of prevalence in the United States? Well, just take a look at the graph below:
This graph from The Autism Community in Action (TACA) pulls from CDC data and includes the startling statistic that autism prevalence has increased 317% since 2000. However, as we have seen, the diagnostic criteria for autism either did not exist or was extremely limited in scope until the latter half of the 1980’s. Beginning in 1994, with the release of the DSM-IV, a child could receive a diagnosis of Asperger’s Syndrome if they demonstrated impairment with use of eye gaze, poor social reciprocity, and significant difficulties adjusting to changes in routine, combined with no delays in language or intellectual development. This is a much different clinical presentation from what would meet criteria for a diagnosis of Infantile Autism in 1980, so it is no surprise that more people would meet criteria for diagnosis of a condition in the domain of autism.
Additionally, consider that the release of a new version of the DSM is not necessarily the cultural phenomenon that has people lining up on the sidewalk waiting for the doors to the bookstore to open. It takes time for this information to trickle into the public consciousness and practice of a licensed psychologist who works in a setting where they are trained to conduct diagnostic evaluations. Furthermore, the distribution of psychologists across the United States is uneven, and the overall number of psychologists have increased over time. Specifically, an article published in the American Psychologist journal of the APA in 1981 reported that as of 1980 there were estimated to be “35,100 licensed psychologists residing in the United States, of whom 24,300 are clinically active doctoral-level, health service providers.”14 In comparison, recent data from the U.S. Bureau of Labor Statistics reports that as of 2023 there were 207,500 psychologists in the United States, with 76,800 identified specifically as clinical and counseling psychologists.15
If we do some quick math, comparing the number of clinically active doctoral-level psychologists reported by the APA in 1980 (24,300) to the number of clinical/counseling psychologists reported by U.S. Bureau of Labor Statistics in 2023 (76,800), that represents a 216% increase. Meanwhile, over that same period of time, the U.S. population grew from approximately 226 million to 334 million, or by approximately 85.4%. Therefore, we see more than double the rate of growth in the approximate number of practicing psychologists qualified to diagnose autism relative to the population.
The statistics provided in the graph above are frightening, and as a practicing psychologist I can attest to the challenges that families face in caring for children and loved ones on the autism spectrum. There are many more (and much longer) blog posts to write about the incredibly resilient and compassionate families who support loved ones on the autism spectrum, to say nothing of the amazing people I know who themselves have received a diagnosis of autism. As we look for answers on how to understand and support the people we love, it can be challenging to parse through the unbelievable amount of information at our fingertips. And to be fair, it is completely understandable for people in our society to seek understanding as to why we have seen such growth in the rates of autism prevalence in the United States. This search for understanding can lead us in many different directions, and occasionally to explanations for rising prevalence rates which are not supported by scientific analysis, such as vaccine injury. However, I posit that objective analysis of available data suggests that the primary causal mechanisms in the rise in prevalence of autism can be most strongly attributed to the following three factors:
A. Broadened diagnostic criteria which include individuals of vastly differing symptom presentations and development in a single diagnostic category.
B. The increased number of professionals licensed to diagnose autism relative to the general population.
C. Increased public awareness, acceptance, and recognition of characteristics which may indicate the presence of autism.
Ok, but get to the point. What happened to Asperger’s?!
If you’ve made it this far, I’m deeply grateful for the time you took to read this article. I hope it has been informative and interesting, and it is now time to answer the question first posed. As I mentioned in point 1 in the section above, there is now a single diagnostic category which encapsulates vastly differing symptom presentations. This was codified into practice with the release of the DSM-5 in 2013 under a category known as ‘Autism Spectrum Disorder.’ It includes two primary domains, (A) Persistent deficits in social communication and social interaction; and (B) Restricted, repetitive patterns of behavior, interests, or activities. If a person meets sufficient criteria in each of these areas, the level of functional impairment in each domain is then codified as a level 1 (requiring support), level 2 (requiring substantial support) or level 3 (requiring very substantial support). Following a breakdown of the specific criteria in the text of the DSM-5, it includes the following note: “Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder.”16
So, the final, and perhaps unsatisfying, answer is that Asperger’s Syndrome still exists. However, it now falls under the diagnostic umbrella of autism spectrum disorder in the DSM-5 and is no longer given as a diagnosis. Despite this fact, many individuals who received a diagnosis of Asperger’s strongly identify with that term and may actually prefer it as a means of self-identification. The legacy of Hans Asperger, however, is another matter entirely, and we must separate it in our minds from the individuals who prefer the use of that term for self-identification. If you are interested in learning more about the controversy surrounding Hans Asperger’s legacy I recommend the following article from Scientific American as a starting point (The Truth about Hans Asperger's Nazi Collusion | Scientific American).
In conclusion, we must acknowledge that the development of the diagnostic category currently known as autism spectrum disorder has been a complex process which continues to evolve. Conversations about prevalence, while important, should not distract from the fundamental appreciation we have for the variety of human life and experience on this planet. Though deficits in social interaction are an aspect of autism spectrum disorder, it has been my experience that some of the most profoundly impactful and emotionally engaging moments I have experienced as a psychologist have involved my work with individuals on the autism spectrum. Some clinicians, such as myself, are even moving away from conceptualization of autism being a ‘spectrum’ in our direct therapeutic work with clients, as that framing can for some individuals communicate value judgements which are unhelpful. The truth, as I see it, is that despite the importance of understanding a person’s needs through the lens of a diagnosis, there is a more important and universal human experience in which we are all trying to make meaning out of this complex, often confusing world. Compassion for individual differences, combined with a constant striving for greater understanding, will be the cornerstone of our progress as a society.
If you’re still interested in anything I have to say, please tune in for my next blog post where I will discuss in greater detail what occurs in an autism evaluation, how diagnostic decisions are made in relation to current DSM-5 criteria for autism spectrum disorder, and changes in our understanding of how autism may present differently for men and women.
2. Shuster S. Camus's L'étranger and the first description of a man with Asperger's Syndrome. Psychol Res Behav Manag. 2018;11:117-121https://doi.org/10.2147/PRBM.S157669
8. Kanner L. Autistic disturbances of affective contact. Nervous Child. 1943;2(3):217–250.
9. Rosen NE, Lord C, Volkmar FR. The Diagnosis of Autism: From Kanner to DSM-III to DSM-5 and Beyond. J Autism Dev Disord. 2021 Dec;51(12):4253-4270. doi: 10.1007/s10803-021-04904-1. Epub 2021 Feb 24. PMID: 33624215; PMCID: PMC8531066.
10. Asperger H. Die “autistichen Psychopathen” im Kindersalter. Archive fur psychiatrie und Nervenkrankheiten. 1944;117:76–136. doi: 10.1007/BF01837709.
11. Gesi C, Migliarese G, Torriero S, Capellazzi M, Omboni AC, Cerveri G, Mencacci C. Gender Differences in Misdiagnosis and Delayed Diagnosis among Adults with Autism Spectrum Disorder with No Language or Intellectual Disability. Brain Sci. 2021 Jul 9;11(7):912. doi: 10.3390/brainsci11070912. PMID: 34356146; PMCID: PMC8306851.
16. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders: DSM-5. American psychiatric association.
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