I’m having a hard time with the discussion about the movie, Music, written and directed by @Sia. First, everyone is referencing NonSpeakers as “non-verbal.” NonSpeakers are nonspeaking because they are apraxic, and that means they can’t coordinate their movements to speak.
They often also can’t coordinate their bodies. They do things without being able to control themselves. Asking them to act in a movie where they have to do very complex ordered tasks would be overwhelming.
It can take a NonSpeaker a week to write an article because of the difficulty of spelling to communicate. But when we publish articles by nonspeakers, nobody reads or shares them. They are our lowest traffic demographic despite that I put 10x more effort in promoting them.
And they are ACTIVELY oppressed and degraded and mocked by these colonizer ABAers that we could shut all the way down if we worked together. And Ren Everett was one of the most amazing advocates for NonSpeakers, by THEIR consensus, and Ren was bullied out of advocacy.
I saw a 60-second clip wherein an apraxic autistic GIRL was said to be able to understand everything she hears. She was given access to AAC. In reply, @Sia said there were 13 autistics and there were also trans actors on the cast. The girl who plays Music does everything Sia does
And people are acting like that relationship is gross & toxic. @Sia's interview features her stimming by rocking back & forth the whole time. She says she never leaves the house even outside the pandemic. She has a history of suicide attempts. She impersonates everyone she hears
She has historically not been able to perform and can't without a mask or something covering her face. She laughs compulsively at things that aren't humorous. She is wearing a hat made of socks and a stuffed animal. Her profile says she should be in diapers.
She has to sleep 7-12 hours a day and spends the rest of the time watching TV to help regulate because she feels too much. She needs to watch documentaries to turn down her feelings.
She stutters and loses words. I'm sorry, but we don't show this kind of moral outrage when actually, actively oppressive things happen to Nonspeakers.
@ekverstania works her ass off to make sure the community understands and learns from Nonspeakers but most of the people complaining about @Sia's language are using "nonverbal," which is so reductive. We have to advocate for @AllAutistics by listening to them.
If Nonspeakers feel dehumanized by the character's portrayal, I'll honor that. But we are not listening hard enough to them. How many of us have Nonspeaking apraxic autistic friends you can consult about their opinion on this portrayal?
Because if we don't do that FIRST, then we need to ask them before we speak over them. I'm going to ask my nonspeaking friends today, if they have time and spoons, to react. But I do not see that the actor was mocking autistics. She moves like me.
Also, I find Rainman and Forest Gump highly relatable. I'm not sorry about that. I move the way the character in the movie clip does. So does my kid. What's wrong with that? I find incredible ableism in a lot of the way we are reacting.
And let's talk about the predatory Autism Speaks moving in at the 11th hour to put their stain on things. They have a script. They also have neurodiversity advocates and autistics on their staff they use as confirmation bias. Call them and ask them about anything and get this:
"They are a small but vocal minority who are very active on Twitter." That's what they told our board member before they knew she was calling on behalf of NeuroClastic. They also told her they didn't have the resources to focus on what we are doing, then stole my project.
With mega dollars. With all the work we do, we have never even raised a total of $10k. That's facts. They can and do afford to make sure we can't afford search engine real estate or get our content out there.
I researched Autism for 12 years before ever finding out the community exists. It was a local friend who put me onto it after reading my novel and saying that my female main character was autistic. I told her, no, but the protagonist and his dad and grandfather were.
We have to realize that yes, you can be 💯% immersed in Autism and not ever find anything from a neurodiversity standpoint. That day, I saw Agony Autie's sponsored video on neurodiversity, and I just wept. I saw @aspergersgirls’ list of female traits. This is why we need money.
We need to sponsor content. We need to help each other rank up in search engines. You know what Autism Speaks doesn’t have? An autistic audience. The director of adult services there told me that if a site could get an autistic audience of 10k people they’d have major leverage.
If we want people to find us, to find the community and understand themselves, we need to try harder to put all this moral outrage to work. Matthew Rushin’s was politely passed on or ignored by the mainstream, but our community got over 85,000 signatures on a petition in one day
That pardon is historic for a lot of reasons. WE (the autistic community) did that, not the orgs, media, or celebrities who came in at the 11th hour and went right back to their deficit model language. Yes, @Sia is using language that needs some guidance. BUT...
She's also asked the world to #presumecompetence-- which is the biggest revolt against the narrative pushed by the detractors who are trying to maintain Nonspeakers are not the authors of their own words. She is normalizing AAC. She's not making the star into a burden.
Maybe she should have hired an autistic actor for the lead, but using "level of functioning" to describe apraxia is an imperfect way to say that yes, it would be overwhelming for an apraxic person to maintain that kind of schedule and overwhelm and follow that many ordered steps
Deej was free in the month of July, and we advertised it on our platform. There's a heartbreaking scene where he gets embarrassed because he couldn't control during an interview constantly putting his fingers in his mom's hair. He got overwhelmed and the producer had to go meta
And explain that he had to step back. No one would watch it. In See It Feelingly, Tito Mukhopadhyay goes to the Melville (oh, Melville 🖤🖤🖤) house and can't control picking up one of Melville's books on display.
In this hilarious article, Nonspeaking teen Trevor talks about how he can't control himself and uses scissors to cut his own hair. The results are hilarious (with pictures) and he's really got a good attitude about it. Let's platform apraxic autistics. neuroclastic.com/2020/02/11/put…
Trevor's hair. 😂
I'm just saying, there are really important messages in this film that everyone is criticizing so harshly, but hot damn, the whole premise is PRESUME COMPETENCE. If you don't know why that's revolutionary, subversive, and EXACTLY what we need, you need to listen to Nonspeakers.
They have a severe human rights crisis with a cabal that functions like an actual cult to prevent them access to communication rights and to maintain that nonspeakers are not mindless meat sacks. This film is doing something that to the mainstream is vitally important.
Let’s wait for Nonspeaker input, who often are not on social media because they require a communication partner and the privilege of communication access to be able to even share their opinions. Let’s use the attention on this film to promote nonspeakers and their work.
Let’s share their films, their YouTube channels, the orgs focused on communication rights, their books, articles about oppression against them, and let’s hear from own-voice nonspeakers. We need to put in work to make sure they are heard. Sia isn’t responsible for that. We are.
They’ve had movies out for years. Let’s Champion them and learn about communication rights. We already have own-voice representation that we can try harder to platform and signal boost.

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More from @NeuroClastic

21 Nov
I want to apologize for my responses to the Sia movie. Nonspeakers had replied, but I didn't see it. It was erasing their input by asking people to listen to them. I also should have used my personal account and not the publication account. (cont)
My personal perspectives are very affected by my experiences & are not universal among our contributors. I am really sad for all the constant pain & erasure & misrepresentation autistic people experience. I definitely don't ever want to invalidate any of that. We deserve better.
I (Terra Vance) will do better to use my personal account to respond to things that are not an issue that is pretty universal among our contributors and apologize for not doing that. I made mistakes and missed things that were relevant to inform a full and fair reaction.
Read 4 tweets
21 Nov
I want to clarify a few points about my thread about the Sia movie because I think in my long thread, I still wasn't clear enough on a few points. I'll try to condense them to one thread at a time.
1. I wanted the point of the thread to be about how we as a community were addressing the issue was often using talking points and language that doesn't reflect the best language for nonspeaker rights.
2. Many of the things said about Sia were things that are tacitly ableist and can cause harm.
Read 17 tweets
20 Nov
Thread: I’m going to put a trigger warning on this for attempted suicide, but is good news. A couple days ago, I announced to Twitter what had been told to me: that someone I cared about profoundly had died from suicide. He was an autistic 22-year-old.
That was what the family was told. He had tried to save someone from an abusive situation, but it resulted in him being shunned and scolded and written off as a troublemaker. But what he did was brave and heroic, which I’d been saying daily. I was afraid this would happen.
But, and my details are incomplete right now, he is ALIVE. What happened (I think. Will confirm) was he was on a ventilator for his family to say goodbye, but he continued to breathe when they took him off the vent. He was triaged for 18 hours, & finally his vitals stabilized.
Read 8 tweets
14 Nov
The people behind #CommunicationRights are not obstructionist behaviorists. @NeuroClastic has speech language pathologists, psychologists, educators, OTs, MTs, researchers, neuroscientists, & nonspeakers who communicate through AAC, spelling, & sign. #ActuallyAutistic #Autism
These people may have an aggressive approach to bullying autistics & our allies out of our own narratives & using their white (that's all white people) privilege to maintain the #monopoly on #Autism, but they are NOT allies. They are #oppressors. We can and do communicate. See?
We have orgs, individuals, & initiatives championing #CommunicationRights. @U4CommChoice @Communica1st @ekverstania @autselfadvocacy @awnnetwork_ @ReachEveryVoice and so many more. It's 2020, and we are #nonCompliant with a #Behaviorist agenda that parades itself as #science.
Read 22 tweets
7 Oct
Let me explain why autistic people may perform better with robots. It’s not their “Easy to read” social cues, it’s because they’re honest and predictable. They aren’t going to give an exasperated sigh or treat us like we’ve verbally assaulted them by expressing a need (cont)
They’re not going to call us into the office and tell us they have “concerns” because they misinterpreted our responses. We aren’t going to find after six months of mistreatment that someone has been harboring a grudge because they misunderstood OUR subtext. (Cont)
They won’t assemble in groups in the break room and stop talking when we walk in. They aren’t going to think we are angry at them if we don’t wrap every instruction up in platitudes or remind them they’re a good person if we need to ask them to do something differently. (Cont)
Read 21 tweets
7 Oct
@NSF @VanderbiltU @Cornell @Yale @GeorgiaTech This is the most disrespectful and dehumanizing thing I’ve ever seen, and that’s a high bar. Somebody needs to do a survey of autistic suicidal ideation after reading about this. Disgusting. neuroclastic.com/2020/10/06/5-m…
I assure you that our ability to tolerate suffering is monastic already and that your testing of our patience is already a Sisyphean marathon you can’t fathom. Maybe the reason we are underemployed is because your nonsense is a parody straight out of Swift’s Laputa.
To be autistic is to be the narrator in Gulliver’s Travels. There are not enough words to express how abjectly fucked this is. You want us to act like human beings? Start with treating us that way.
Read 11 tweets

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