You know what? No - it wasn’t my last word on the subject. I have been distressed about this Sia stuff for days. It has interrupted the one break I promised myself. It has interrupted my progress and healing. I’m furious and broken to see people eye rolling at our pain.
Portraying disability isn’t just another art project. It’s not just another role for an actor to sink their teeth into. Everything you put out into the world about disability will shape the way abled people see us for generations to come. This is no exaggeration.
I can’t count the number of late-diagnosed autistic people I know who cite not being like Rain Man as the primary reason they didn’t seek diagnosis. I can’t count the number of insensitive, ill-informed reactions to me disclosing I’m autistic as a result of bad depictions.
Sia claims to have spent “three fucking years” researching autism. Three fucking years in which she didn’t learn one basic thing about us. Everything about the way she talks about disability is wrong. She can’t even say the word, disability ffs she relies on euphemism.
If you are so ignorant about disability that you can’t even say the WORD disability, preferring patronising alternatives disabled people generally hate, like “special abilities”, then it is NOT your place to make a movie about us.
If you can’t even provide appropriate accommodations on set for an autistic actor to not become so distressed they can’t continue, you have no business trying to educate the world about autism. What you’re really telling the world is it’s too difficult to work with us.
If in your “three fucking years” of research, you haven’t come across the notion that Autism Speaks is widely regarded as a hateful “cure” organisation, where the hell have you been doing your research? I learned that shit on day one.
If after “three fucking years” of research you’re still using functioning labels, you’re either lying or you haven’t been listening. In my first month after diagnosis I used functioning labels in ignorance & was instantly told why this is wrong. These are basics. ABCs.
I don’t know what to say to the Very Sensible crowd who think this whole backlash is manufactured outrage. I don’t know how to explain to them how it feels to see an abled actor flapping & gurning like a school bully mocking our mannerisms.
I don’t know if I’ll ever be able to explain how it felt to watch that trailer. The visceral pain of being patronised, infantilised, having our story ripped from us and aped that way. My reaction was wrenching. I sobbed. Just on the simple gut level of being mimicked.
Then I thought of the damage this will do for future generations of autistic children. I thought of the year I’ve spent writing my book, telling my own story with careful caveats, terrified with every word that I’ll get it wrong, or falsely claim I speak for everyone.
I thought of the weight of responsibility I’ve felt this last year explaining my own heart, my own brain, my own life, knowing that everything I put into the world could be the difference between someone being diagnosed or misunderstood forever.
And that’s when it’s MINE to tell. This story doesn’t belong to Sia. Yet she’s treated it with all the care of a wealthy brat who knows if they break the toy, they can just buy another. Sia has not spent years agonising over every word, every claim. She doesn’t care.
To Sia, we are just a passing fascination - a concept she’s always had a “thing” for. For us, she has bulldozed years of our hard work, our advocacy, our careful explanations. She has spoken over our collective voices with a megaphone. And we will live with the consequences.
I don’t have a lot more in me right now. I’m drained from fixating on this. I can’t bear the thought that in future years, when people hear they might be autistic they won’t think of an accurate portrayal by autistic artists. They’ll say “nah I’m nothing like Music”.
And for the record, Sia, I’m disabled. Not differently abled, not special abilitied, not someone to pat on the head and be extra special nice to because I can understand what you’re saying. I’m a complete, complex disabled adult. Disabled disabled disabled. Try saying it.

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More from @Sara_Rose_G

21 Nov
This is my very last word on the subject, I promise. But I just watched an interview with Sia where she said it’s cruel to talk about people like us like we’re not in the room. Everything about this project has been talking about us like we’re not in the room.
Don’t want to talk about us like we’re not in the room? Bring us into the room & listen to us. Bring autistic writers into the room. Bring autistic actors into the room. Bring autistic musicians into the room. Bring autistic dancers, costume designers, directors into the room.
Her whole premise is about us (shock) being people, actually. Magical, inspiring people, she seems to think. Yet still not to be trusted with something as precious as a leading role in our own stories. That tells you everything about what she really thinks.
Read 4 tweets
20 Nov
I’m really not supposed to be here. I’m currently not well enough to be here. But this Sia movie has been brought to my attention and I’d like to briefly explain why many autistic people are upset about it before logging off again 1/
Every time a non-autistic person makes a project about us for art, it sets us back in numerous ways. The first is obvious - that it inevitably, no matter how hard it tries, mistranslates the experience of being autistic. This is harmful to us because it puts disinformation out 2/
into the world. This not only damages the way the world views us, creates more stigma around us & paints us as some fascinating alien species, but it also means fewer autistic people understand themselves enough to seek diagnosis. Why would they when movie autism looks 3/
Read 10 tweets
14 Oct
Autistic self-diagnosis is valid for a number of reasons:
- autistic traits, both those in official diagnostic tests & those widely anecdotally reported by autistic people, are very specific & wide-reaching. They also don’t have a lot in common with each other 1/
For example, sensory issues have very little to do with how we socialise but they’re both autistic traits. Given how many things are listed as autistic traits & how disparate they are & how they affect every area of an autistic person’s life, it’s highly unlikely 2/
that someone would identify strongly with much of a list like that & not be autistic. It’s not like a horoscope where it’s designed to be vague & apply to anyone who reads it. If you relate to autism that strongly, it’s very likely you’re autistic 3/
Read 8 tweets

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