Authentic representation matters, especially when the demographic is so vulnerable.
Like Sir Anthony Hopkins, I am a late-diagnosed autistic person.
And when I tell people that I was diagnosed with autism at 37 years old, they very often don’t know what to make of that fact — some even hinting that since I don’t “seem autistic,” that I might be misdiagnosed, that the highly-experienced mental health professional who spent hours diagnosing me was incorrect.
This experience is rather typical for late-diagnosed adults.
The reasons for this are multitudinous, but can largely be filed under “autism updates in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition” and “stigma and misrepresentation,’ which is where Sia’s movie Music comes into play — as the film is highly problematic in that regard.
As we say in the neurodiversity community, “If you’ve met one autistic person, you’ve met one autistic person.”
In 2013, the DSM-5 redefined autism when it combined five developmental disorders (including Asberger’s) under Autism Spectrum Disorder, a term contested in the autism community, with many favoring the less problematic, and more descriptive, Autism Spectrum Neurotype; but a change that’s generally been supported in both the scientific and autistic communities, though some do call for more revisions to help autistics find diagnosis (and its tools) before traits become more problematic.
The changes were completed nearly a decade ago, but are still being integrated into the often-archaic mental health system, and autistic females are still thought to be extremely underdiagnosed.
One of the reasons for this underdiagnosis is that females are often adept at a coping method called masking, which involves suppressing natural reactions in an often-unconscious attempt to “seem normal.” (It should be noted that this presentation, called the ‘female phenotype’ is another debated term as there’s great evidence that any gender is capable of this — Sir Hopkins, an accomplished actor, is a very likely example of a male who could likely sort out “acting normal” via observation and imitation.)
Though masking can be very effective, this coping method often becomes problematic for the autist’s mental and neurological health.
Masking is highly associated with autistic burnout; a condition which very often results in a severe physical and neurological incapacitation (including going nonverbal) that can last for months, or even longer, and is (unsurprisingly) associated with suicidal behavior.
So, while one might think that if autistic traits don’t persistently disable, they shouldn’t warrant a diagnosis — it isn’t that simple.
Hiding the way one’s brain functions requires an immense amount of neurological effort, and, sooner or later, it comes at a cost; and if society keeps getting the same stereotyped representation, autistic people will continue to be underdiagnosed due to them, and their therapists, not seeing autism as a potential diagnosis.
We shouldn’t live in a society where medical professionals often follow media and societal expectations over science, but we do, so we need the media to take portrayals very seriously.
The Representation Issue
To explore the second matter, “stigma and misrepresentation,” we’ll first turn to the #ActuallyAutistic movement.
Actually Autistic is a movement that was started by the autism community on Tumblr in 2011 and has since been spread to other social media platforms, which now has millions of posts across TikTok, Instagram, Twitter, Facebook, and other social media platforms.
The movement was started because people in our society, at large, have a very narrow idea of what autism looks like, and it causes a lot of really harmful issues for autistic people.
The thing is, autism does not look or “seem like” anything — and the media is telling people it does.
We’re individuals with unique experiences, each affected by different areas of the spectrum; plus, many of us are masking our traits in order to survive in a society that seems determined not to take us seriously.
As we say in the neurodiversity community, “If you’ve met one autistic person, you’ve met one autistic person.”
To further explain, autism also can also manifest in all kinds of ways because the autistic neurotype affects many aspects of neurological function.
Unfortunately, ‘Music’ has not only had oodles of ableism issues, but Sia herself taunted the autistic community when the abundant representation issues were brought up on Twitter.
Most think of the spectrum as a linear construct that goes from ‘mildly autistic’ to ‘very autistic,’ but the autistic experience is actually more akin to a color wheel representing many different traits and behaviors within the areas of executive functioning, perception, social abnormalities, movement, language, monotropic mindset (focus on special interests), sensory processing, and more.
So, Rain Man might have been highly affected in the areas of language, monotropic mindset (counting), and social abnormalities.
Sam on Atypical might have a very similar profile, and, more importantly, expressed in a very similar way.
The same goes for Sean Murphy on The Good Doctor; as well as Abed in Community and Sheldon Cooper on The Big Bang Theory, who arewidely perceived as being autistic.
Therein lies the problem.
When physiological conditions are repeatedly portrayed in the media in a similar fashion, it creates a broad misunderstanding and stereotyping in regard to what conditions actually look like, and, crucially, what responses are actually helpful, and which can (often unintentionally) harm.
This gap in public perception and awareness leads to a lack of emotional support, denial of crucial services, and even misdiagnoses — which is a huge deal as 72% of autistic people are considered high-risk for suicide.
How autistic people are represented matters.
It needs to be accurate, and it needs to involve us.
The Trouble with ‘Music’
So, you might be saying, “What about Sia’s movie? That’s different, it’s about a female.”
Unfortunately, ‘Music’ has not only had oodles of ableism issues, but Sia herself taunted the autistic community when the abundant representation issues were brought up on Twitter. (This controversy resulted in the filmmaker deleting her account after publicly apologizing.)
Makers of streaming art — please let this Sia moment be the last stereotyped representation of an autistic person.
Additionally, Music appears to be a female version of a similar profile: speech problems, monotropic mindset (music), and problems with social awareness — with a large helping of differences in movement, resulting in highly-problematic stimming imitations performed by a neurotypical actress.
And, again, it’s expressed in a very similar way, Music is a lot like Rainman…but with more pizazz.
There needs to be a wider representation of the autism spectrum, so that people may gain a better idea of all the different ways we can appear in life, and stop unwittingly harming us.
To give an example of a potential presentation that defies stereotypes, I’ll cite another fictional character dubbed likely autistic by many autie fans: the wonderful Leslie Knope, of Parks and Recreation.
Knope is a passionate and hilarious woman who only wants to talk about her special interests (politics, her friends, waffles, and Friday Night Lights), can behave aggressively (often inadvertently), has great difficulty understanding boundaries, and though she’s extremely compassionate and caring, the emotional reactions of others often surprise and confuse her, which continuously causes issues. (She’d have a really challenging time in the “real world,” I guaran-fucking-tee it.)
Or, better yet: the similarly dynamic, complex, and utterly delightful Matilda on Everything’s Gonna Be Okay, played by Kayla Cromer — who is actually autistic!
As Matilda’s a recent grad, maybe in future seasons we’ll see her dealing with day-to-day adult autism issues; trying to make it in an office without masking herself into burnout, dealing with sensory issues whilst need to “be professional,” managing grocery shopping with executive functioning issues, and the challenges of stunted success due to simply not “seeming normal.”
And while I could do with less self-deprecating humor from Matilda in regard to autistic traits, I love knowing that the performance is at least coming through an actress who knows what it feels like to behave in ways that are often misunderstood; and it’s also just so healing and inspiring to see an actually autistic person rocking their chosen field.
Though I still watch The Good Doctor and I wish Atypical hadn’t been canceled, now it has been done: Cromer, and Everything’s Gonna Be Okay, have proved that an autistic person can lead a television series.
As a result, if a new show or film comes out without true autistic representation, it will almost definitely get shit from the #ActuallyAutistic community.
Which brings us back to Music.
Personally, I’m not black-and-white on if only autistic actors should play autie characters; but they absolutely have to be extremely knowledgeable about why we do the things we do, they should understand how it feels, physiologically — and no one knows that better than someone who is actually autistic.
This is especially relevant for a character like Music, who is completely nonverbal (which doesn’t mean vacant, as many presume) and has very visible stimming traits.
We Have So Much to Offer, Please Help Enable us to Do So
I truly cannot overstate the importance of our society becoming more aware of the fact that autism can appear in a myriad of ways, especially in adults.
It’s extremely difficult to live in a society that was literally built for a different kind of brain, that persistently overwhelms our neurology; a society that disables and disregards us, and very often when there’s a simple way to just work with us, if only people would choose to try instead of dismiss.
And I believe, I hope, that they would choose to work with us if they just knew how; and if they just had any idea of what we’re actually up against.
The autistic community hasn’t been able to get people to understand on our own; unsurprising as there’s a lot working against us, and the vast majority of us are exhausted and platform-less.
We need the media’s help with this. We need you to start telling our stories.
Our actual stories, in all their complexity and variety.
They need to be heard so people will start taking us seriously, so we can get the support we desperately need. When you start listening to autistic adults, hearing our harrowing tales of trying to survive in this incompatible world — that horrifying statistic about 72% of us being high-risk for suicide starts to make a lot of sense.
We are truly up against so much, even if we don’t “seem autistic” in the moments that you’ve witnessed.
But our struggles don’t mean we have nothing to offer the world; as wonderfully demonstrated by Sir Hopkins, Miss Cromer, and so many others, we have much to contribute.
We just need people to start asking and learning how to work with us, rather than (often unwittingly) working against us, so that we may live up to our true potential; and while readers are encouraged to peruse the internet of #actuallyautistic, we desperately need the media to take the lead in ensuring accurate and authentic representation of the vast autism spectrum.
So, makers of streaming art — please let this Sia moment be the last stereotyped representation of an autistic person. Fund actually autistic projects, hire actually autistic creatives, and seek actually autistic consultants.
Nothing about us, without us.