S.R. Salas wrote a brilliant post about the problems of defining the autistic experience by neurotypical standards. Sadly, their blog is down and has been for some time. I have a few excerpts saved, and will endeavour to recreate the information here.
What I found described what could only be called rage-filled tantrums lasting for hours on end. Parents, scared to death, unable to help or control their children’s outbursts.
A parent describing their initial foray for information about autism. Judging by the emotion-laden description, I would guess that this information was from parents in the Autism community (distinct from the Autistic community).
What I read scared the hell out of me! It didn’t sound anything like my child.
I was assured that if Autistic, my child would be unaffectionate, unemotional, unloving, uncaring, untouchable, unreachable. None of which is even remotely true.
Here we can see that the description of autism as provided by non-autistic people relies heavily on poorly-informed stereotypes and misinterpretation of autistic needs and reactions through the neurotypical lens. It also appears very likely that the accounts that make it onto the internet are the ones that are most emotional. Parents crying for help and venting because of the severity of their situation.
If I’m being less kind, I could say that the accounts that make it into these spaces are also the ones that will garner most sympathy and increase the standing of the parent in the social hierarchy of pity that is common in parent support groups.
the description of a meltdown for instance, was not via anyone who had ever actually experienced them, but from people who had observed them. Same for all the other Autistic ‘symptoms’ I had read about.
This bit is interesting not only from a parenting point of view but from a diagnostic one. Autism is defined not as a set of symptoms as one would look for in an illness, ones that patients might self report like pain, nausea, tiredness etc. It is defined as a set of behaviours without insight into why those behaviours occur. The irony that this insight is the stated purpose of (modern) ABA is not lost on me.
An autistic person reading the diagnostic criteria for autism may well not recognise theselves in this definition. How autism is described, and how it feels to be autistic are greatly different.
This can make it easier for parents to believe that something happened to make their child autistic. In cases where subclinical autistic parents have a child who is more obviously autistic and whose behaviour more closely matches autism stereotypes, they can fail to self-diagnose because the criteria work from outside-in, but see their child as fundamentally different from them because in applying the diagnostic criteria to their child they are joining the perspective of the neurotypical observer.
Conversely, the same effect prevents diagnosis between parents and children who are more closely matched in their presentation of autism. The parent sees the reasoning behind the behaviour (inside-out) which is at odds with the diagnostic criteria (outside-in).
In short, neurotypically defined diagnostic criteria for autism is lacking in that it does not include parallel descriptions from the opposite perspective.
Note I have to share that none of the information I came across mentioned adults, possibly because the idea of adult Autistics was merely that…
And here is another reason why neurotypical definitions fail. Parents may assume that because there are no descriptions of autistic adults in these spaces, and certainly not any autistic voices or perspectives, that they cannot possibly be autistic themselves. If they are not autistic, and they understand their child’s behaviour, then their child must also be non-autistic.
To conclude, neurotypical and clinical definitions of autism lack the perspective of autistic people themselves. This limits our understanding of autism and our diagnostic capabilities. With limited understanding, how can we hope to approach autism in a constructive manner?
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