Content note: this post talks about Sia’s film ‘Music’, the issue of restraint/violence towards people with disabilities, self-injurious behaviors, and meltdowns.

I was honestly trying to decide if I wanted to write about Sia’s film or not. Just thinking about it really hurt my heart.

As an autistic adult who needs a lot of supports, I had a lot of feelings that I couldn’t tangle out of my head. Being an AAC user (especially after my most recent traumatic brain injury in 2020), words are especially hard to come by these days. In fact, I’ve had to use Proloquo2Go’s copy and paste feature to help me write parts of this post – because my brain is needing the picture supports to really figure out how to put it into words for other people.

Being one of “those” autistics like the main character Music, I have a lot of feelings. I’m at risk of being placed in a group home/institution, and I have a full-time caregiver who comes to help me throughout the week. I now use an AAC device to communicate, because my speech is generally unreliable and my brain doesn’t cooperate with me or my body as much as it used to. I carry those noise cancelling headphones with me everywhere I go, in case it’s too loud and I can’t handle it – just like the main character in the film does.

How do I begin?

The film hurts a lot. Not just for me, but thinking about my brothers and the other autistic people I love.

The film is about a autistic non-speaking girl named Music and her older half-sister Zu, who gets custody of her after their grandmother dies. The whole film, however, is mostly about Zu’s plot line. Music is kinda just there to advance Zu along, as well as dancing/showing the “mysterious inner world” of an autistic person. My friends, those dance scene dream sequences are most definitely not what’s going on in my head (except maybe during my seizures, but we’ll get to that in a minute).

It’s important to note that the actress is NOT autistic. The main character, Music, is like a caricature of an autistic person – headphones on, the way she walks/moves, etc. It feels like being mocked, and I remember people making those kinds of exaggerated movements at me when I was growing up.

When I was younger, I got bullied and punished for my natural movements of flapping, rocking, and other obvious autistic behaviors – especially in preschool and elementary school. By the time I was in the higher grades, I would try so hard to suppress myself to avoid punishment. If I showed any of those traits, I got made fun of. (And people wondered why I struggled so badly with self-harm and had those “panic attacks” in high school that were actually meltdowns? Hmmm…)

And Sia turns these natural movements we have into unnatural dance scenes? It makes me feel so uncomfortable. When we are in public, we are told to be still and “stop acting like that.”

But when the neurotypical actors do it as a performance, they are lauded and celebrated.

Why?

Flashing lights in an “autism” movie?

Honestly, what kind of research was done for that? A lot of us autistics (myself included) have seizures as a co-occurring condition – something that is well-known in the community if someone has done their “research” like Sia supposedly did. Those flashing lights would’ve definitely given me a seizure, or at the very least triggered an awful migraine or a sensory overload meltdown. That’s a no thanks from me.

I couldn’t watch the film in its entirety specifically because the opening sequence alone could trigger a seizure for me. I had to rely on clips of it because of safety.

It makes me wonder if either Sia actually did any research or if the film is just not intended for autistic people. I honestly feel like it’s both; for a film about an autistic girl like me, I don’t feel like it’s even aimed at audiences like us at all. It seems like it’s created for neurotypical audiences as a “feel good” movie, while we’re sitting alone in the corner trying to tell people why it stresses us out.

It makes me feel like an object, for people to “enjoy” and move their own plot along while I am eventually left in the background all alone with my headphones on.

And the big part of the film that upsets me: the restraint.

Prone restraint – being held down, face down, unable to breathe during a meltdown.

Music is told she’s being “crushed with… love”. This has literally killed autistic children and adults, and the film promoting this is extremely dangerous. Sia said she would remove the scenes – and then never did.

Now, this is a trauma thing I’ve never talked about on here (or to most people) – I have had the prone restraint done to me once during a meltdown. They thought I was having a “panic attack,” but it was actually a sensory overload meltdown. I wasn’t a danger to anyone else – but I couldn’t communicate. In case you were wondering, it did not help.

Instead, I was left bruised, struggling to breathe, and still have nightmares from it.

When I was hospitalized last year (not the sepsis one, a previous caregiver wasn’t refilling my medicine box or doing the medicine reminders), I saw restraints happen and was so scared of being the next victim. That whole experience could have its own post.

I can speak for myself, Sia.

Why do people always think it’s okay to talk over people like us? It’s not just me; my friends have this same problem too.

Just because I need extra help to live independently and regularly use a speech generating device to communicate, that doesn’t mean that my thoughts and feelings are not valid. I grow weary of the constant narrative that we are a burden, that our presence is either tolerated or that our existence is just to teach someone a moral lesson – because why else would someone else like me exist?

The truth is, we exist for more than the entertainment and gaze of people like Sia.

We’re here to love and be loved, and to establish those longed-for friendships and relationships. We exist to find joy in the small everyday things often looked over, to weep over the heavy things that eventually burden all humans – to experience the full range of emotions that come with the weight of living. We are here to be the change makers that are going to leave this world in a far better place than we ever found it – through actions large and small.

That said, making a difference doesn’t mean I exist solely as a plot device or as someone’s moral lesson. I’m just me, and that’s how it should be.

We’re people – human beings. For some reason, people seem to forget that.

Instead of watching ‘Music,’ here’s a much better alternative: ‘Listen’

The organization CommunicationFIRST made a great short film called LISTEN, which is led by nonspeaking autistic people and discusses their personal experiences! I was very happy flappy to see some of my friends in the film, which was good. It does mention restraint in the film, so be warned there – but I think it’s extremely important to watch.

They also collaborated with the Autistic Self-Advocacy Network and the Alliance Against Seclusion and Restraint to create an excellent toolkit, which covers information on nonspeaking autistics’ preferences, meltdowns, restraints, and other valuable details!

To see their whole page with the short film, toolkit, and more reviews/thoughts from other nonspeaking autistics – here is the link: https://communicationfirst.org/LISTEN

We can speak in our own way. The real question is: are you listening to us?

• disability rights