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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Brilliant words and so much to consider here. I haven’t seen the video/film but had heard vaguely that there was something a little ‘tone-deaf’ doing the rounds. It is, I think, almost impossible to see our kids as others do. We look at them simply as them, in all their brilliance. x
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Thank you! That’s very true Martha xx
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So interesting. Despite what others say though, I can often ‘spot’ other autistic kids when we are out though I suppose in a way it’s not that different to spotting a girl with my daughter’s coat on. I am in fact just spotting the familiar. One of our boys definitely does ‘look’ autistic but to me he’s always just looked like David. #kcacols
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Thank you Ann! Yes, that’s very much how it is for me too, recognising the familiar, as you say xx
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I think that your point here is quite valid; even within one diagnosis there is a multitude of meaning and “looks” and behaviors. There is no one size word that fits any of us though we try like mad to label everyone.
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Thank you, yes, labels can be of some help for sure, but within every ‘category’ that we put people in, we must also remember that everyone is still an individual, of course xx
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This is such an interesting read. It’s not something that is in my daily life, so you’ve given me food for thought. I love that you talk about his acceptance by others being more important. #mmbc
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Thank you so much Cheryl, for reading and for your lovely and thoughtful comment ❤
Wishing you a very lovely Christmas! xx
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I found this really interesting. I think everyone is different and there must be so many variations of autism, how can people get annoyed about one perspective or one portrayal? Thanks so much for linking up at #KCACOLS. Hope you come back again next time.
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Thank you so much! There are sadly so many disagreements and conflicts around these things, when really there shouldn’t need to be. But I guess it’s natural when there are strong feelings involved, that emotions run high xx
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These are beautiful words and inspirational too. I believe that if we all saw the world in the same light, then it would be a really boring place. It is those who see it differently who are there to change the world. Having taught children and adults with all kinds of abilities, it is clear there is no one size fits all, and that’s the beauty of humans 💙 thank you for sharing and inspiring x
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Thank you so much! That’s so lovely how you see the worth of all kinds of abilities ❤ xx
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I guess it is fair to say people don’t look autistic in a still photo but often we can see someone is neurodiverse in the way they carry themselves or act, sometimes it is obvious sometimes not. #KCACOLS
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That’s very true, thank you Jade x
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People can say things really flippantly can’t they – a very thought provoking post #KCACOLS
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Thank you! x
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Totally agree, my son experiences the world differently from other people , dances around excitedly and hums away when he sees something good. Yesterday I took him to the park and we got “the stares” I was totally out of practice of ignoring it because it was busier than it’s been for a while with the sunshine. I never know if people think they’re complimenting the child when they say “he doesn’t look it?” But it’s just as rude as people staring at my child just being himself.
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Thank you so much, I really appreciate connecting with others who share a similar experience, and who can truly understand and relate x
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This was an interesting read! I’m autistic, and what some might call “high functioning,” although my social anxiety is quite severe, so I’m not a fan of functioning labels; they imply I can do things that I truly cannot. That aside, the main issue I have with Sia’s movie is the restraint scene. That form of restraint can lead to death, so it’s dangerous to portray as an option for interacting with autistic people. I agree with you that autistic people should be represented across the spectrum, rather than just focusing on people who may have been previously diagnosed with Asperger’s. Thank you for sharing your view; the more perspectives I can read, the better I can understand.
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Thank you so much for your kind and thoughtful comment! I’m sorry I didn’t see it sooner, it seems to have got stuck in ‘spam’ even though it clearly wasn’t. I agree with you on all of this, and that retstraint scene worries me too. Restraints should not be normalised, and as you say they can be lethal.
I totally agree with you that functioning labels are very problematic, and I generally try to avoid them too.
Thank you again for sharing your perspective! x
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My son is 5, I think he is going to be more like your son, more like the cliche autism look, I love how he looks, I hate his frustrations and meltdowns, I adore his wide eyes , his delayed or no response to questions, I love it all except for his pain. That’s my pain. I feel it with him and for him every single day. Thank you for honesty.
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