Undiagnosed autistic people almost always share the widespread outdated and stereotypical views of autism. It takes a diagnosis for most of us to discover what “spectrum” really means.

Kristen Hovet

Nov 22, 2020·5 min read

We have a lot to learn from the Sia autism film controversy.

The wildly talented (and tormented) singer-songwriter, Sia, has faced a great deal of criticism for her upcoming movie, which cast an apparently non-autistic actor to play the role of an autistic character.

In addition to her long list of pop albums and collaborations (e.g., “Titanium” with David Guetta), Sia has written hit songs for Rihanna (“Diamonds”), Shakira (“Chasing Shadows”), Britney Spears (“Perfume”), Katy Perry (“Double Rainbow”), Beyoncé (“Pretty Hurts”), and many more.

Of note, most of the songs she’s written for others took her under 20 minutes to write. Words like “genius” and “prodigy” are frequently used to describe Sia, her work, and her tremendous creative output.

“I’ve never seen anyone write a melody and lyrics that fast,” said Greg Kurstin, producer for Adele and Paul McCartney, and Sia’s frequent collaborator. “She’ll sing it and write it and it happens in one motion, and then she’s revising. And then it’s one take. You’ve got to keep up with her, really.” (from “How Sia Saved Herself” by Hillel Aron for Rolling Stone)

Sia’s film, an upcoming musical drama called Music, was cowritten by herself and children’s author Dallas Clayton. The film stars Kate Hudson, Maddie Ziegler, and Leslie Odom Jr. After release of the film’s trailer on November 19, 2020, many autistic individuals felt that the portrayal was not realistic and that the role played by Ziegler should have gone to an autistic actor.

Some responses:

Not realistic

I’m on the spectrum and this [trailer] makes me cringe. … the majority of autistic people don’t act like [the character played by Maddie Ziegler] or the way we are ever portrayed in films. Waiting for a film that portrays autism a bit more realistic, although since we mask so much, might be too boring for people to watch. 🤣 -Victoria Rose on YouTube

Relies on myths about autism

I was diagnosed with autism at six years old. From this trailer alone, watching the brief scenes made me uncomfortable. You can clearly see how they over-exaggerated stereotypical autism traits… It would be like making a film about someone with PTSD and them having a panic attack/flashback every minute and being super dramatic through the entire film from start to finish. It would be like someone with depression in a film saying they want to die every second out loud, etc. It’s just super exaggerated and cringy. Then people are surprised when you tell them you have autism because they expect you to be dumb or silly since the majority of media over-exaggerate the most severe autism traits and symptoms and expects every person with autism to be like that. -Khan on YouTube

Plot twist?

The irony in all of this is that Sia has a long list of characteristics suggesting that she herself may be autistic, or at the very least not entirely neurotypical — the word used for those who are not autistic and do not have other neurodevelopmental differences (e.g., ADHD, Tourette’s, dyslexia, etc.).

Here are some of the characteristics that stand out, in no particular order:

1. Sia identifies as queer. Autistic folks are more likely to identify as gay, lesbian, bisexual, trans, and/or queer than non-autistic folks.
2. Sia was misdiagnosed with bipolar disorder, a common misdiagnosis received by many undiagnosed autistic women.
3. Sia has attempted suicide. Suicide and suicidal ideation are more common in the autistic population than in the non-autistic population. It is not clear whether depression that may lead to suicide is more common in the autistic population because of inherent attributes of autism (e.g., chronic inflammation) or due to bullying, rejection, and abuse experienced by many autistic people throughout their lives. Likely, it’s a combination of these.
4. Sia has not admitted to having an eating disorder (at least not that I’m aware of), but she has admitted to thoughts and behaviours common to those with disordered eating. She told Rolling Stone that her internal monologue goes something like, “Fat f*ck, fat f*ck, fat f*ck. Tree trunk, tree trunk, fat f*ck, fat f*ck, tree trunk, tree trunk, loser, loser, fat f*ck, loser, fat f*ck, fat f*ck. … I have dieted like crazy over the last 10 years.” Eating disorders are more common in the autistic population than in the non-autistic population. There is such an overlap between anorexia and autism, for example, that some experts now suggest that anyone with anorexia should be automatically assessed for autism.
5. Sia has claimed that she struggles with anxiety and PTSD, two highly co-occurring conditions in those who are autistic.
6. Sia has been diagnosed with hypermobile Ehlers Danlos syndrome, a genetic condition that is very highly co-occurring in the autism community. The geneticist who diagnosed my own hypermobile Ehlers Danlos syndrome told me that autism, hypermobile Ehlers Danlos, and mast cell activation disorders co-occur so often that the three together might one day be given their own name or diagnostic category.

People with hypermobile Ehlers Danlos are “more likely to develop autoimmune disorders [which Sia also has], conditions in which the body’s own immune system attacks parts of the body, causing damage or dysfunction to those areas. These can include conditions like psoriasis, rheumatoid arthritis, and Hashimoto’s hypothyroidism.” (from “Researchers have identified a relationship between Ehlers-Danlos Syndrome and autism” by Emily L. Casanova for Autism Research Review International)

It could very well be that even with all of these characteristics Sia is neurotypical or non-autistic. But there are so many indications of autism (or at least neurodiversity) that many in the autism community have suspected for years that Sia is one of their own.

Many autistic adults remain undiagnosed or are not diagnosed until later in life. The reason? They mostly coast under the diagnostic “radar” because their characteristics of autism are not externally obvious.

The majority of autistic people are not obviously autistic and they do not have intellectual disability. Most of the experience of autism is internal, meaning you cannot see it. It involves characteristics like:

• The ability to have intense focus on a beloved topic or activity (e.g., researching, making music, crocheting, painting, etc.),
• Marked sensory differences (either sensory sensitivity to noise, certain textures and fabrics, touch, and so on and the inability to filter out unwanted sensory stimuli; or sensory under-responsiveness, such as having higher pain tolerance or being almost numb to some stimuli),
• Preferring a lot of alone time, often due to overstimulation or even burnout, and needing time to decompress and pursue special interests (which are often experienced as deeply satisfying and comforting), and so on.

Why is it important to point this out?

Sia, like most people, may not have a good grasp on the myriad ways that autism can present. If she is autistic and not diagnosed, then having this information could be helpful — and potentially even life-saving. Many newly diagnosed autistic women describe their adult autism diagnosis as a huge relief. Many talk about their newfound ability to have self-compassion and to look back on their lives with a far deeper understanding of themselves.

This goes for anyone else out there struggling, without answers, knowing from a young age that they were different but not quite understanding why.

For more information check out: Female Autism Phenotype