Part 2: The Impact of Living An Autistic Life when the Wrong People Control the Narrative about Autism

“Rain Man the musical, but with girls.”

That was what Sia described her film as in an old interview dug up by several determined and furious Autistics. If you don’t know why that statement is a problem, then a quick Google search should fill you in.

From the moment I heard Sia describe her project as a such, I knew there would be problems. Don’t get me wrong, many of us would be happy to see themselves represented onscreen at all– but we have hit a threshold of not being able to tolerate “at least they tried” anymore.

While Sia has admitted to listening to the wrong people, and has apologized, many still are treating Autistic criticism as if it’s unfounded and just hollow complaints:

“She’s paying homage and bringing awareness.”

Awareness organizations are what cause us so many problems.

“But making a movie is hard work!” 

Yes, it is. It is also work that would have been better informed by the right consultants. Both of those things can be true.

“But she consulted a legit nonprofit. Advocacy is advocacy, right?”

Wrong. I’ve seen countless comments from non-disabled individuals who bring up the organizations that claim to support families of autistic individuals. I’m no stranger to witnessing how autism has been depicted and described on and off screen, and I often take note of who usually has a hand in manipulating the worlds’ view of my identity.  

“But they’re experts.” 

Full stop.

A degree or a board position on an autism organization and lived experiences are not one and the same. Also, many of these people only surround themselves with people who think like them, still holding onto the demeaning, archaic information taught about autism when the solution to having an autistic kid was institutionalization. Many of them are the causes of late- and mis-diagnosis and the source of parents’ amplified fears and confusion.

Many of them play gatekeeper, preventing minority, immigrant, non-male, and multiply-disabled Autistics from being acknowledged and supported.

So no. They are not experts. That is something they have labeled themselves.

Although I wasn’t diagnosed until my late 20’s, I’m no stranger to the medical deficit model of disability and the harm it does to children and adults my community is comprised of. As the unknowing and undiagnosed ASD+ADHD sister of several ADHD-diagnosed brothers, I grew up thinking anything “abnormal” was broken and must be fixed using methods no one would ever subject their “normal” children to.

Everything I learned and saw around me painted disability as an affliction to avoid, be feared, or be ashamed of. Eventually, I realized that it’s society’s definition of normal that needs changing– not my brothers, me, or those like us.

But first, I learned to mask my traits.

As a kid, I witnessed what the fears and frustrations of having a child with a developmental disability can do to families when the information and support available are based on perception, assumption and lack of inclusion. This same bias was what enabled me to avoid many of the systemic barriers and stigma in my brothers’ paths.

I didn’t fit the stereotypes that raised red flags, so I was allowed to slip under the radar and observe the system unseen. I became the child that received no support at all while my brothers endured treatment centers, separation from equal education, manipulation, and prescription drugs.

To be fair, this wasn’t the reality for all of my siblings and much of it was done out of misunderstanding, but to me it’s evident that the measures taken to “normalize” neurodivergent kids are extreme and unnecessary. The organizations that claimed to be of assistance were the primary manipulators, and parents’ dependence on them only helped grow their influence. 

I look at many of these groups today, and I still see the fear-stoking and false information fed to parents who truly do want the best for their children. I see cruel and uncontrolled research designed, funded, greenlit, completed, reviewed, published, and praised as fact by outsiders– without ever considering the perspectives and treatment of those subjected to them.

On my end, the effect of the deficit model of disability pushed me to be someone I wasn’t. I think I always sensed that there was something wrong or questionable going on with how these organizations and facilities operated, and in a way, subconsciously masking my autistic traits even more was a way to avoid them.

I thought that as long as I wasn’t myself, I was safe, and that is a destructive mindset to have as a child. All I knew back then was, “I’m different. Different is not normal or good. Difference makes others uncomfortable, so be good and fix yourself so they won’t try to fix you.”

Sounds simple, right?

Wrong. 

First of all, this mindset can lead to ableism and the expectation to always conform and always be readjusting the mask. As an unsupported, unreliably-speaking girl, I was led to believe that speech and independence is necessary and required to live whatever a “successful” life is supposed to be, so I pushed myself to always meet, fake, or catch up to the expectations of my peers.

When I reflect back on the meltdowns I would have as a child, I realize at least half of them occurred while trying to– or being forced to– verbally communicate. This was damaging to my mental health in ways I couldn’t unravel until deep into my 20’s and caused just as much fear-based isolation as my natural preference for silence and solitude.

Now after all of that, here I am today: the woman with fluid support needs who still only speaks when spoken to. I can’t help but sometimes feel like I’m just a much more exhausted and neglected version of who I would have been with support and understanding.

It was rough coming to terms with my identity once I began to realize, partly because I did not have to endure the effects of the deficit model of disability until adulthood, and also because I had spent my entire childhood struggling in plain sight to meet expectations.

‎‎Another problem with the assimilation mindset is that we’re led to believe that comparable work is a requirement to be happy, fulfilled, and equal. ‎We believe only those who are “hardworking” are deserving of equity.

We attach work to success and allow disabled people to live in poverty due to inability to find or sustain socially acceptable employment as expected or the lack of accommodations. By blocking out discomfort and riding the childhood momentum, pushing myself to work harder and harder and far beyond sustainable capabilities, I eventually found myself in a trap I was unable to escape.

After finally having several of my disabilities acknowledged, I was thrown into the “high-functioning” category- a label placed on me by people who couldn’t tell that I was one meltdown away from being homeless because I was no longer riding on the momentum from my adolescence.

This was a category of people continuously told we had no excuses, invalid complaints, and just needed to work harder. We didn’t fit the deficit model because no  doctors could see what only they deemed a cause for concern or sign of struggle.

I realize that I tried with everything I had to “be good”, a feat that proved destructive and beneficial only to those I interacted with on sparse occasions, and by the time I found myself wondering if a lifetime of masking was worth being seen in a positive light, I had no idea who I was. It was also interesting to see how that contrasted with people’s view of my brothers disabilities, which were more negative and stigmatized. Because they were diagnosed, they were in need of treatment while I was just lazy, defiant and seeking attention.