A few days ago, a mum I follow on instagram (at ‘bertiesjourney’) did a lovely post about how autism doesn’t have ‘a look’. A lot of others joined in, posting pictures of their autistic children or siblings, to show there’s no specific look. Many had been told by others that “he/she doesn’t look autistic”, and that comments like that feel really awkward/wrong.
All the posts I saw were beautifully positive. But you can trust this goth at heart to bring some misery to the party… I mean, I’m normally one for focusing on positives, strengths, abilities etc. But I feel it might be a good idea to consider a couple of different perspectives on this subject of what autism ’looks like’ (or not).
I can’t remember ever being told that our boy ”doesn’t look autistic”. In fact, the pediatrician who diagnosed him told us ”just by looking at him now, I can tell he’s autistic” (obvs more was needed for the formal diagnosis, but still, that’s what he said). No, it wasn’t about any distinguishing physical features, but about how he moved around, what he paid attention to (or not), the sounds he made etc. A few short minutes was enough for it to show clearly as autism to this experienced doctor.
With age, I think our boy’s autism has become even more apparent. At places we visit, where being disabled/carer can give reduced rates, we’re hardly ever asked to produce evidence of our son’s disability. I think they take one look of us rocking up, with Penguin jumping, flapping, pulling in different directions, often making sounds as well, and they need no further proof. He looks disabled, I guess, and I’m fine with that as long as it doesn’t mean he’s seen as being of less worth.
Which leads me to another thing… The film ’Music’ made by Sia (the singer), for which a trailer was released a few days ago. I’ve only seen the one trailer, as far as I know that’s all the material released so far(?). The film is about a girl who’s portrayed as what could be described as ’severely’ autistic (although rating autism as mild/severe etc is complicated). She’s nonverbal, uses an AAC device to communicate, and by what is shown in the trailer she ’looks’ disabled, in the same sense as my son does. This film has been met with some really harsh criticism from autistic people, on social media and in other forums, articles etc. And the fact that Sia has been pretty clumsy/rude in her replies hasn’t helped. From what I’ve seen, many ’actually autistic’ people online have criticised Sia for casting a non-autistic actor to play an autistic person, but a lot of the upset also seems to be about how the girl in the film appears. How she is (in their words) ”infantilized”.
And I can’t help but feeling that those highly verbal and independently living autistics are insinuating that they don’t want ’their’ autism, or their narrative of what being autistic is like, to be soiled by the portrayal of a person who is *that* different, and *that* disabled. I see them recommending other films about being autistic to watch instead of ’Music’, and when I check them out they are about someone with more of an ’Aspergers’ type of autism.
My son is beautiful inside and out (ok I know I’m partial, but others have said this too, perhaps some of them were just being nice but I still believe it to be true). But I never hear that ”he doesn’t look autistic”. So maybe he does? And if so, that’s fine! The fact that he appears (and is) disabled, the fact that he’s likely to need the help of others for daily support throughout his whole life, does not mean that he should have to hide away (because he doesn’t fit a certain narrative, or for any other reason). What he looks like is not really what matters. What does matter is him being accepted, appreciated and valued for who he is, and not being seen as of less worth due to being quite obviously disabled. Thank you x
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