Any time clinicians and diagnosticians endeavor to find a pigeonhole in which to categorize a set of symptoms or behavior manifestations, it can be an imperfect solution. That said, there is value into a process understanding of looking into how a clinical diagnostic option comes into being and then subsequently falls out of favor.
Let’s begin with a bit of a history lesson on the Hans Asperger, the man for whom this diagnosis was named.
Hans Asperger, a physician born in Austria whose postdoctoral work on the “Autistic Psychopath” in 1944 is generally accepted to be the basis of Asperger’s syndrome. The original German version is available as a .pdf and here is a translated English version.
As an important note, and the subject of a different blog, readers should be reminded of geopolitical events going on during the first identification and exploration of this condition in 1944 Germany and Austria. While historically Hans Asperger was seen as someone with caring and compassion for those with his namesake diagnosis, based on the 2018 work on Herwig Czech he was also inextricably tied to the National Socialism of the time.
A solid retrospective analysis of this condition, done in 2003 provides a good historical look back at studies related to Asperger’s diagnosis. Further, for our German speaking readers, here is an interesting interview with Hans Asperger done later in his life done a on German radio program which makes for a informative listen.
When I was growing up, I didn’t know anything about the Diagnostic and Statistical Manual (DSM), then in the third iteration, and now in the 5th version, but Aspergers as a clinical diagnosis appeared only in 1994 in the DSM-IV (roughly 50 years from when Asperger’s postdoctoral thesis first identified children with these specific characteristics). More information on the peer review process and the history of this manual is available from the National Institutes of Health. Suffice it to say, there is an extensive review process, as reflected by having only 5 editions since 1952.
“There is a value to having defined categories of disorders as it provides a tool for consistency among and between providers, but neurodivergent individuals don’t always fit into nice tidy boxes.”
This imperfect solution provided many children with diagnosis labels and sometimes treatment modalities that felt at times as it they we inheriting hand me down clothes from an older sibling. These can be adequate, but not really a perfect fit always for them.
I am reminded of several peers growing up that together had the summative list of common traits of what would in the DSM-IV be called Asperger’s syndrome. Intensely interested in Star Wars and getting along much better with adults or younger kids while still yearning for ways to connect in more than superficial ways beyond their immediate cohort, some of them carry similar characteristics into adulthood. They have a desire to please others and to belong, very skilled in fields of math, science or computers, but still are rule-followers and believing in an Arthurian sense of right and wrong with little personal bandwidth for social nuances or mores.
Given that there wasn’t a clinical diagnosis when growing up didn’t minimize the social isolation or interpersonal struggles and many found labels of depression or ADHD as a means to find support from a range of providers. Autism did, and still in many minds, conjures images of the movie Rain Man.
When the DSM-IV came out, it provided a diagnostic home for a child with this particular sub-set of traits in the Autistic neighborhood. However, by the late 1990’s research continued to find limited differences between Asperger’s and High Functioning Autism (HFA) characteristics. Specifically, work by Lichtenstein (and others) as genetic mapping abilities increased, made it more and more difficult to parse genetic differences between these two houses in the Autism neighborhood. Ultimately, with the peer review process and the publication of the most current DSM-V, the Asperger’s and High Functioning Autism (AS and HFA) now cohabitate in the same home in the Autism neighborhood.
Autism did, and still in many minds, conjures images of the movie Rain Man.
While diagnosis does not define an individual, social stigmas around Autism can still persist and it is important to recognize that regardless of clinical diagnosis that understanding these types of traits from a perspective of ability rather than deficit can be a meaningful way to set kids up for success.
The Asperger’s Society of Ontario provides a good summary of many of the social, behavioral and cognitive strengths of this erstwhile diagnosis.
Certainly, since the publication of the DSM-V, the characteristics of the Asperger’s child haven’t disappeared and the needs for social-emotional learning support still continue with these kids. Last month, I was working with a student who exhibited many of these Asperger identified traits, but exhibited anxiety because his label no longer existed. He recounted a conversation with his medical provider whereby, much like before the DSM identified Asperger’s, he had a new label. He, quite wise for his years, joked that it didn’t matter if the label changed, that he was still the same kid who still needed the same kind of supports—and as he was quick to point out, was still awesome at the same types of things.
“Even though genetic markers and increasingly precise diagnostic tools may have made Asperger’s Syndrome as a diagnosis an outdated one, the importance of understanding the strengths of those with these traits, and more broadly anyone who is neurodivergent cannot be overstated.”
We are all people first with a wonderful tapestry of variety and abilities. Building on uniqueness and strengths while supporting areas of growth in the zone of proximal development is a good model regardless of diagnostic labels.
Fascinating article! Interesting commentary on the history of aspergers.