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[R]ight from the start, from the time someone came up with the word ‘autism’, the condition has been judged from the outside, by its appearances, and not from the inside according to how it is experienced.
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On how autistic people have to waste so much time trying to explain that our actions and behaviors don’t necessarily mean what other people assume they mean. And how people will actually argue with us about what our behaviors mean, because they erroneously believe body language and psychology are universal and are arrogantly intent on projecting the meaning of their own typical behaviors onto everyone else.
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We say a child has autism if he displays a combination of traits and behaviours that are deemed to be problematic […] Professionals observe these ‘autistic behaviours’ and then assess the people who display them by using a sort of circular reasoning: Why does Rachel flap her hands? Because she has autism. Why has she been diagnosed with autism? Because she flaps.
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But it’s the research with typically developing babies that truly suggests we should take social attention theories of autism with a large dose of salt.
Too often, researchers assume a specific trait, such as social disability in autism, and then reach backwards looking for something to explain it. Or, they might see two traits – social disability and avoidance of eye contact – and link them together, because intuitively, eye contact seems related to social functioning. This is not good science, and the flaws of this approach become especially obvious when it is done without reference to how the trait [for instance, social (dis)ability] typically develops, as happened here.
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For seventy years (at least), people have been making assumptions about autistic people based on outward behaviour. Even the diagnostic criteria for autism is based on what is easily observable by an onlooker. They think that the stranger we act, the ‘more autistic’ we are.
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Autistic being is predicated on un-being. In order to claim an emotion, we need to have it empirically validated.
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An autistic person cannot experience abuse, cannot feel her body being shoved against the cold wall of a hospital psych ward – an autistic person cannot experience systemic violence unless a non-autistic person validates those claims.
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In my experience, the autism spectrum diagnostic criteria are frustratingly incomplete. They paint a picture of that which can only be seen on the outside, by an observer who knows nothing about the firsthand experience – I.e., “what it’s like” to actually be on the spectrum.
Autism: Explorations 