My Life With Asperger's

How to live a high-functioning life with Asperger's.

The Autism Spectrum: Has It Really Changed?

Thoughts of an autism spectrum in light of Leo Kanner's and Han Asperger's ideas

There’s a great deal of talk about how the definition of Asperger’s and autism have changed in recent years. The transition from “autism” to “the autism spectrum,” and having that newly defined spectrum include Asperger syndrome sounds like a major expansion of diagnostic range.

But is that really so? Do today’s descriptions truly contain major new elements? Are new aspects of the spectrum described? To get a sense of that I invite you to read the original papers from Leo Kanner and Hans Asperger.

Thanks to the Simons Foundation, Dr. Kanner’s paper is available online for free.

Dr. Asperger’s WWII-era paper was not translated into English until much later. Lorna Wing’s 1981 article quotes from it, but the paper itself did not appear in English translation for another 10 years, as part of a work from Uta Frith.

I wish there was a free link for that paper too, but this at least has a rental option.

Reading the two papers I am struck by how much of what we describe as “new” today was in fact presented in those seminal papers from 70 years ago.

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Dr. Kanner describes the autistic regression that some parents today attribute to vaccines. Clearly modern vaccines were not a factor for those families. He does not make much of it; the notes of regression are just one observation among many. It’s significant because it establishes that regressive autism is not a new condition. It was common enough that at least one of Kanner’s eight cases of “severe” autism was regressive. Those cases date from the 1930s.

Dr. Kanner describes kids who are significantly impacted by autism, most of whom had significant problems with speech – either not talking or not conversing appropriately. Dr Asperger describes a mix of kids and adults (he followed some of his cases 20+ years) who are much more articulate and verbal. Reading the two descriptions the breadth of the autism spectrum  as we know it today is clear. Both men called the condition they were depicting autism. 

Both men felt autism could be present with intellectual disability (ID) but autism with ID was not the primary presentation for either of them. Even in cases where kids could not speak normally, Kanner made a point of noting that they seemed intelligent–just in their own worlds and hence untestable.

The kids in Kanner's paper had lower IQs than those described by Asperger. Both doctors noted that the parents of all the kids were at least of average intelligence and many were quite bright and accomplished. But that has to be tempered with the observation that clinics like theirs tended to get referrals from more educated and affluent families.

Dr. Asperger described adults on the spectrum, where he made the point that we can be very successful especially in technical work. Dr. Kanner’s work was limited to children and teens, but he too described a progressive emergence from disability and increased adaptation with increasing age. Both men presented hope for the future.

Dr. Kanner and Dr. Asperger are both Austrian. Dr. Kanner came to America after attending college in Berlin; Asperger stayed in Austria. When reading the two papers I could not help but sense a warmth in Kanner and a coldness in Asperger. Asperger was considerably more judgmental, frequently using words like malicious to describe his patients.

Kanner seems more cognizant of the reality that many of the kids he observed were in their own world; you can’t be malicious if you are oblivious to other people. That does not mean you can’t hit someone or act in rage, but when you have no concept of your effect on the other person, malice is not really an applicable term.

Both doctors made a point of describing the “eccentric” (what I would now call Asperger-ish) nature of many parents. Both noted the presence of autism and other issues in the immediate family. Both saw a strong inherited component.

Today I hear a lot of talk about how the diagnostic umbrella has grown to include many children who would not have been picked up 30-50 years ago.  That’s a very interesting observation.  I know from personal experience that my autism was not recognized for what it is when I was in school. Neither was my son’s. Yet several of Asperger’s descriptions of patients were so close to me that it made me squirm. I've little doubt that the good doctor would have recognized me immediately, had my parents brought me into his clinic.

It’s very clear that Dr. Asperger had kids like me in mind when he described the condition that now bears his name, and it's clear that his definition extended to kids (people) with much greater impairments too. He recognized that some of us grew up be stars and others struggled. It’s also clear that his original vision was lost, until fairly recently. 

There’s not enough space for me to summarize all the points of the two articles.  I’ll just say that I saw the full scope of the autism spectrum as we know it today described in those papers.  I’d be interested to hear from any of you who have read these important papers – what are your views?

 

John Elder Robison is Neurodiversity Scholar in Residence at the College of William and Mary, Williamsburg, VA, USA, and a member of the Interagency Autism Coordinating Committee of the US Department of Health and Human Services. John serves on many other autism and neurodiversity-related advisory boards both government and private.  As an autistic adult John is known for his books Look Me in the Eye – my life with Asperger’s, Be Different, and Raising Cubby.

John Elder Robison is the author of Look Me In The Eye: My Life With Asperger's, and Be Different, Adventures of a free-range Aspergian.

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