What’s in a name? – The Autistic Advocate

Autistics are very concerned by words, by the meaning held behind them. Take a brief walk in the minefield that separates “autistics” from “people with autism” and you’ll see what I mean. My written diagnosis refers to Asperger’s Syndrome when describing my autistic symptoms, and I’ve used that as short-hand to describe what my autism is like to others. But I didn’t know about the controversy surrounding “Asperger’s.”

First of all, Hans Asperger was a eugenicist, and worked with the Nazi regime in Germany with children. I didn’t know this, and it will make me re-think about using the phrase.

However:

The biggest irony here is that it’s all utterly irrelevent. So many people are furiously worried about whether or not Asperger was a Nazi without realising that actually, beyond it being named after him, Asperger’s Syndrome has absolutely nothing to do with Hans Asperger.

Despite popular belief, Asperger’s Syndrome is not Hans Asperger’s diagnostic criteria, it was formalised after his death in 1980 and only introduced as a diagnostic label in 1992. It was based only loosely and in part of his recognition that certain children in his care presented in a certain way.

The formal definition of autism, for diagnostic purposes, included late, delayed speech or a lack of speech, but several doctors treated children who had the other symptoms of autism but were early talkers, and talked above their level. This was the behavior that Hans Asperger noted in some of the children; he called them “the little professors.” Asperger’s Syndrome was created as a diagnosis for these children, who didn’t fit the classic autism model.

The autism diagnosis was remodeled to create the Autism Spectrum diagnosis, and Asperger’s was rolled into it. Originally, we were the autistics who couldn’t even fit in with the other autistics. Now we’re all one big happy family, or so I thought.

There are certain countries for whom (America I’m looking at you here) Asperger’s is a now defunct diagnosis. Nobody is being diagnosed with it any longer, or at least shouldn’t be unless the clinician is using an out of date manual (which does happen, because hey, why would you want to keep with the times…).

But there is a world outside of the United States that, rightly or wrongly continues to diagnose Asperger’s on a daily basis and will continue to do so for the next few years – not to mention that Professionals, even when not using a diagnostic criteria that recognises Asperger’s, still use the damaging phrase “What used to be Asperger’s”.

Because the label of Asperger’s has continued to be used, and from all of the years where it was a valid diagnosis, there are connotations and stereotypes associated with Asperger’s, particularly related to intelligence:

The fallacy of the intelligence aspect has backfired on those with an Aspergers diagnosis. The assumption of high intelligence brings with it the assumption of being able to ‘cope’, as much as ‘High Functioning’ Autism does. There’s a whole world of issues with it being assumed that you’re ok because you’re assumed to be ‘smart’ and therefore able to handle everything admirably.

I’ve been dealing with autistic burnout for a good part of the year (though things are better right now, thanks for asking), so this part of the article really struck home:

It’s created a sub-narrative that Autistic people are just ‘bright and quirky’ which has led to too high expectations from people external to families and an inability of families to advocate effectively for their loved-ones.