Are Celebrity-Studded “Autism-Fundraisers” Actually Supporting Autistic People?

A question mark made out of stacks of U.S. dollar bills.

Back in 2015, about four months prior to my own diagnosis, a video went viral of an autistic singer named Jodi Dipiazza singing the Weird Al Yankovic song “Yoda” alongside the singer himself and a chorus of seven other autistic children. It was charming, it was cute, it warmed my heart a little as I’m sure it did many others’. The performance took place on that year’s edition of Night of Too Many Stars, a telethon headed by Saturday Night Live creative Robert Smigel in honor of one of his children. That’s where this sweet story hits a snag.

Telethons can certainly have positive outcomes, of course. For example, the Children’s Miracle Network started as a telethon to raise money for children’s hospitals in North America, and it’s raised billions of dollars to help children fight diseases and keep their families above water during difficult times. There are good telethons.

Then there are the harmful ones (like the Muscular Dystrophy Association’s annual Labor Day telethon), and this is where we return to the Night of Too Many Stars and, to its follow-up of sorts, the upcoming Color the Spectrum livestream. There are a lot of similarities between the two: both feature comedy and musical performances and many of the same people appear in both, including comedians like Jon Stewart and Stephen Colbert, and both are produced by Smigel and his wife Michelle. But what’s most important here is the charity that they both support. The charity is called NEXT for Autism.

I believe NEXT for Autism has a clear end-goal: to “cure” autism through two different avenues. The first is through early childhood intervention and treatment via the Center for Autism and the Developing Brain. One of the first treatment options touted is applied behavioral analysis (ABA). ABA is one of the most harmful forms of therapy when it comes to autism, boiling down to bending the autistic person – frequently a child – into the neurotypical mold through control and manipulation. The opinion of the person undergoing the therapy does not matter. It’s only the will of the neurotypical people controlling them that does.

The second avenue is the CADB’s research wing. The website currently states that it only seeks to enhance the “understanding and treatment” of autism but, as catalogued by Twitter user AutisticSciencePerson, the original text clearly states that they’re looking to “prevent” autism spectrum disorders.

I’m sure that you all see where the problem is. If you don’t, I’ll happily break it down.

Autism is not something you can cure. It’s an alteration in how a person’s brain works and something to live with, not a disease to be battled and won. Most actually autistic people like ourselves the way we are. Being autistic is part of who we are, a fundamental part. The only people who fervently seek a cure for autism are people who see it as an ill of society, with many parents deeming it as a tragedy inflicted upon their children. The fight for a cure is reflective of a stigma that affects autistic people day after day, pressed down onto us by neurotypical people who refuse to actually listen to us.

The other issue is that there are no autistic people on the board of NEXT, and there are – as far as I can tell – no autistic people appearing on Color the Spectrum. Time and time again, we are shoved into the background of our own narratives in favor of neurotypical people speaking for us. It happened with Sia’s film Music and it’s happening again.

You cannot and should not advocate for something without involving the people who will be affected by what you’re advocating for. “Nothing about us, without us” isn’t just some catchy slogan. It means something.

There were autistic people involved in Night of Too Many Stars, namely the previously mentioned Jodi DiPiazza and YouTuber Carly Fleischmann. But there is a direct difference between having autistic people in front of the camera saying how wonderful your organization is and having us behind the camera actually involved in what you’re doing day-to-day.

There’s a bone-deep cruelty in parading us around for the cameras one day and then actively working to eliminate us from the world the next. Some people – including YouTubers Rhett McLaughlin, Link Neal, and Colleen “MirandaSings” Ballinger – pulled out of the Color The Spectrum telethon after being educated about NEXT’s true nature. But it isn’t enough for only some to flee. This telethon must either devote its time and money to an organization that actually involves autistic people or be abandoned all together.

If we’re to make any strides towards true acceptance of autistic people in this world, then neurotypical people must stand alongside us instead of throwing themselves headlong into “charity” that makes them look good while dragging us deeper into the void. This isn’t helping us; it’s only helping them.

Our revolution will not be with blue lights or behavioral therapy; it will be with acceptance, advocacy, and with autistic people leading the way.

Nothing about us without us.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Sia’s New Film “Music” Isn’t Just Bad Representation of Autistic People; It’s Downright Dangerous.

Photo of Sia in a black dress and blonde wig with a black bow.

Content note: includes discussion of mistreatment of autistic people, including prone restraint

Amidst the utter mess that was 2020, I found a bright spot by discovering the tv show Everything’s Gonna be Okay on Freeform. Though it’s not perfect, I did really enjoy the fact that it’s the first TV show to have an autistic lead played by an actually autistic person. The character of Matilda (played wonderfully by Kayla Cromer) is one of the more well-defined, humanized autistic people I’ve seen portrayed. She reminds me of myself when I was younger, before I was diagnosed: a little awkward, hilarious, very dramatic, and deeply human. Seeing Matilda (and Cromer herself) gave me hope that maybe things were going to get better when it came to media representation of autistic women—that we’d be able to tell our own stories more easily and show the world what we’re capable of.

Then the film Music started gaining buzz, and all of that hope immediately got thrown into the void.

If you’re not aware of Music, I don’t blame you. I’ve been trying to avoid hearing about it for weeks. Music was produced, co-written, scored, and directed by Australian musician Sia, who worked principally alongside American actresses Kate Hudson and Maddie Ziegler. The latter plays Music, a non-verbal autistic girl who’s taken in by her older sister Kazu following the death of her guardian.

Ziegler, unlike Cromer, is not autistic. In fact, there’s no one on the spectrum in the entire main cast. There’s a phrase in autistic circles—“Nothing about us, without us”—that comes to mind. I will state that this is not wholly Ziegler’s fault, especially considering that she was only fourteen at the time of filming. Rather, I choose to place the blame squarely where it deserves to go: atop Sia’s shoulders.

Backlash toward Music was swift, which is to be expected when you have non-autistic people playing the roles of autistic folks. Sia’s reaction to this was telling. Allow me to give you a bullet pointed list of what’s happened so far – barring any other incidents before the film’s February release in the United States.

So far, Sia has:

  • Consulted essentially only with the charity Autism Speaks, an organization widely discredited by the autistic community (especially the Autism Self-Advocacy Network) as not actually listening to autistic people and only focusing on how we affect the neurotypical people around us.
  • Stated in (now deleted) tweets that she attempted to work with a “beautiful young girl non verbal on the spectrum,” but that the girl had found the experience unpleasant so she’d gone with Ziegler instead. Note that, as the driving force behind the project, Sia could have done any number of things to make the experience easier on said unnamed girl…if the girl ever existed at all.
  • Said in a (now deleted) tweet, “I cast thirteen neuroatypical people, three trans folk, and not as fucking prostitutes or drug addicts but as doctors, nurses and singers.” As though casting trans folks and neurodivergent people as near-wordless background characters in a narrative dominated by neurotypical cisgender folks is some kind of noble act.
  • Responded to criticism from autistic actress Helen Z regarding being unable to find an autistic performer for the role of Music by saying “Maybe you’re just a bad actor.”
  • Refused to actively listen to autistic people, even after admitting in an interview with the Australian talk show The Project that the casting was indeed ableist.

But all of that is not the worst of it. Set aside the fact that, once again, our main autistic representation is a non-verbal person played by a neurotypical person, spoken and seen through the lens of a neurotypical caregiver. Set aside the fact that Music only gets a true voice in her own head in fanciful musical numbers. We need to talk about what I think is the most dangerous part of the film.

The prone restraint sequence.

While Music is having a meltdown, the character of Ebo – portrayed by Hamilton star Leslie Odom Jr – uses a method called prone restraint to “calm her down.” This involves a person being restrained by having their face forced down into the floor while another person sets their entire body weight on top of them until they calm down. Ebo, when asked by Kazu what he’s doing, responds: “I’m crushing her with my love.”

There have been many moments during the time I’ve known about this film where I’ve wanted to ask Sia “why?” Every time she tweeted, I wanted to ask it. Every time she attempted to insist that she’d done the very best she could, done all of the research in the world—despite not asking a single autistic person for help—I wanted to ask her why.

But Ebo’s line left me with a new question for Sia. I want to ask if she knows who Max Benson is.

If she doesn’t, I want to tell her about him. About how he was a thirteen-year old autistic boy whose only crime was having a meltdown at school. About how he was killed by being forced into the same position as Music is pushed into. Max died because of the ignorance and cruelty of the people who were meant to care for him, because they thought that the only way to calm him down was by forcing him to lay on his face until he “calmed down.”

A child died partially because of this method, a method that autistic people have spent decades saying is harmful and is painful and literally lethal in some cases, a method that’s been banned in over half of the United States—and Sia is promoting it.


Because she doesn’t care.

No matter what anyone tells you about her “good intentions,” how she “wanted to help the community,” it’s not true. Sia clearly doesn’t care about autistic people. We are to her what we’ve been to so many other people: little dolls to twist and turn, puppets to use to tell “heartbreaking” narratives. People like Sia believe they’re heroes for trying to represent us and we should be grateful that they would even try, no matter how harmful it actually is to us.

There is no good reason to watch Music. The only person it helps is Sia, and it hurts the entire autistic community. Instead, seek out media actually created by autistic people. There’s a wide spectrum – pun intended – of works out there for you to consume, almost all of which are infinitely better than Music could ever be.

Support actually autistic people: silence the Music for good.


Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.