I’ve previously written about the “autism epidemic” and why I think it all just reflects better diagnosis rather than an actual increase in the true incidence of autism.  However, this still leaves us with an interesting question: what exactly happened to increase rates of diagnosis?

The diagnosed prevalence of autism has been increasing for a long time, but one big change was the emergence of the idea of so-called “high functioning” autism in the 1980s.  Before then, autism had been thought of as a rare and severe condition.  But by the 1990s and the 2000s, we had changed our understanding, instead coming to believe in a broad spectrum of autism.

It’s true that there were publications that sparked this process.  For example, Folstein and Rutter (1977) published a twin study where they found that identical twins might not always share “autism” in a narrow sense, but the non-autistic twin might still have certain abnormalities.  This suggested that autism was on a broader dimension.  Soon afterwards, Lorna Wing and Judith Gould (1979) published an epidemiological study in which they identified forms of social impairment that coexisted alongside the narrow version of autism that was current at the time.  Wing (1981) then followed up by reviving the concept of Asperger Syndrome, which had attracted relatively little attention until that time.  The idea caught on, and now autism is an identity for numerous people – including myself – who would never have been diagnosed with the narrower version of autism that had existed before.

But why did Asperger Syndrome become popular in the 1980s, but not when it was originally proposed, in the 1940s?

When you look through the literature, it’s not like nobody ever identified kids on the more invisible end of the autism spectrum.  On the contrary.  Of course, Hans Asperger[1] (1991) published his description of these children in 1944, but he was far from alone.  A few years later, Bergman and Escalona (1947) described a group of children with sensory sensitivities who would certainly be classified as autistic today.  Not long afterwards, Robinson and Vitale (1953) described children with autistic intense interests.

Indeed, Grunya Sukhareva (in Wolff 1996) had identified what is clearly a more invisible form of autism as early as the mid-1920s, decades before any of the rest of this work had taken place, although she initially described it as a childhood form of schizoid personality.

Furthermore, I had once assumed that everybody just forgot about Asperger’s work between 1944 and 1981 (you can see this mistaken assumption at work in my very first and rather inauspicious foray into autism writing), but that wasn’t the case at all.  For one thing, Asperger himself was still working and publishing in German.  He also travelled in the United States and was invited to lecture in Japan, where his syndrome attracted some interest from Japanese psychiatrists (Feinstein, 2010).  The differences between autism and Asperger’s syndrome were discussed by colleagues like Bosch (1970) and Van Krevelen (1971).

Like I said, when I was younger, I used to assume that nobody had any concept of more verbal, more invisible autistic people between 1944 and 1981.  It seemed like the obvious explanation for why it took so long to identify the true breadth of the autism spectrum.  But if the idea existed, and was simply not becoming popular, it’s obviously not the right explanation.  What’s going on here?

Well, there wouldn’t have been much value in an autism diagnosis during the 1940s, 1950s, 1960s, and 1970s.  This was the era of institutional psychiatry; people who got diagnosed with childhood psychiatric “disorders” were often separated from their families and warehoused.  Such incarceration doubtlessly caused immense suffering for many autistic people.  Sending more verbal, more invisible autistics to these institutions would not have helped anyone, and attempts to institutionalize these more articulate children would have been more likely to face opposition, given the value society that places on intellectual ability.

However, the United States began bringing children with disabilities into mainstream schools in 1975 and the United Kingdom followed in 1978.  Many other countries have also expanded mainstream access, albeit to different degrees and at different paces.  When children with disabilities were moved into the mainstream, a new system of special education services was created to deliver supports to them.  This system meant that providing a diagnosis to autistic children without obvious intellectual disabilities and other severe challenges could have value – supports could be made available for these children.

And there’s other changes since the emergence of mainstream education that have affected autism diagnosis, of course.  For example, research on ABA-based early intervention created pressures to diagnose autism early on, while children were still of preschool age.

More broadly, as popular awareness of autism has increased, we’ve started to see it everywhere.  Because we know about autism, because it’s salient, we’re more likely to use the category.

Footnote

[1] For the record, merely mentioning the guy’s name does not constitute approval of his role in the Nazi program to exterminate of many children with disabilities. [Author Note, added January 1, 2020.  I originally wrote this footnote because I had seen Herwig Czech’s article discussing Asperger’s connections with the Nazis and his role in this genocide.  Edith Sheffer also wrote a book on the subject (which is on my desk awaiting reading first chance I get).  However, since that time, a pretty vicious academic debate on this subject has started, with Dean Falk arguing Asperger was not complicit in Nazi crimes: see critique of Czech and Sheffer by Falk, response to Falk by Czech, and response to Czech by Falk.  So while Asperger was certainly not perfect (he did suggest that autistic children are somehow malicious or sadistic), it seems like I was probably unfair to him in simply assuming his culpability in the mass murder campaign.  It’s not entirely clear whether Asperger intended for patients he referred to the Am Spiegelgrund clinic to be murdered, and in some ways, his writing was very progressive by the standards of his time.]

References

Asperger, H. (1991). “Autistic psychopathy” in childhood. In U. Frith (Ed.), Autism and Asperger Syndrome (pp. 37–92). Cambridge, UK: Cambridge University Press. https://doi.org/10.1017/CBO9780511526770.002. Original work published 1944.

Bergman, P., & Escalona, S. K. (1947). Unusual sensitivities in very young children. The Psychoanalytic Study of the Child, 3/4, 333–352.

Bosch, G. (1970). Infantile autism: A clinical and phenomenological-anthropological investigation taking language as the guide. New York: Springer-Verlag.

Feinstein, A. (2010). A history of autism: Conversations with the pioneers. Chichester, UK: Wiley-Blackwell.

Folstein, S., & Rutter, M. (1977). Infantile autism: A genetic study of 21 twin pairs. Journal of Child Psychology and Psychiatry, 18(4), 297–321. https://doi.org/10.1111/j.1469-7610.1977.tb00443.x

Robinson, J. F., & Vitale, L. J. (1953). Children with circumscribed interest patterns. American Journal of Orthopsychiatry, 24(4), 755–766. https://doi.org/10.1111/j.1939-0025.1954.tb06145.x

Van Krevelen, D. A. (1971). Early infantile autism and autistic psychopathy. Journal of Autism and Childhood Schizophrenia, 1(1), 82–86. https://doi.org/10.1007/BF01537745

Wing, L. (1981). Asperger’s syndrome: A clinical account. Psychological Medicine, 11(1), 115–129. https://doi.org/10.1017/S0033291700053332

Wing, L., & Gould, J. (1979). Severe impairment of social interactions and associated abnormalities in children: Epidemiology and classification. Journal of Autism and Developmental Disorders, 9(1), 11–29. https://doi.org/10.1007/BF01531288

Wolff, S. (1996). The first account of Asperger syndrome described? Translation of a paper entitled ‘Die schizoiden Psychopathien im Kindesalter’ by Dr. G. E. Ssucharewa; scientific assistant, which appeared in 1926 in the Monatsschrift für Psychiatrie und Neurologie 60: 235-261. European Child & Adolescent Psychiatry, 5(3), 119-132. https://doi.org/10.1007/BF00571671