An appearance on The Project goes badly wrong
I was interviewed on The Project recently about a book I’ve written and illustrated about being autistic. I was watching in anticipation to see how the interview had turned out. I was very happy with the final result, but at the end of my interview they cut back to the studio, where the three hosts start talking about me and I heard the dreaded words… “I imagine a lot of people like me are watching that and are saying Chanelle doesn't seem autistic?”.
I was heartbroken. It’s taken me years to be diagnosed as autistic, because of these very preconceptions. I’ve had to fight the stereotype of how an autistic person presents to be heard, and to get the support that I need. Those kinds of comments invalidate the progress that I have made, moving out of six years of burn-out to being in a space where I can just be.
But the sadness I felt when I heard these words was not just because of my own journey. It was because I know that these words have hurt and upset many other autistics too. I wrote my book, I Am Autistic, to help autistics feel understood and validated. And when I heard that comment, I felt like I’d failed them. I understood that the comment was made to set up another host so they could explain masking (what we autistics do to appear ‘normal’), and they were trying to educate the viewers but that still didn’t ease the feelings I felt.
“You don’t look autistic”. Let’s talk about this. A lot of autistics will hear this at some point in their life. Often the person who says it understands autism as something different to the presentation of the individual to whom they are speaking and as a result they question the validity of the diagnosis. Other times, the person who makes this comment believes they are being kind and complimenting the autistic individual. Both of these beliefs can be quite harmful and invalidating for different reasons.
People think that I don’t look or seem autistic because I can talk eloquently, because I can sit in front of a camera or microphone and describe my experiences, because I’m social, because I’m not rocking or flapping my hands in front of you… It begs the question: what do people think autism looks like? Are you expecting a screaming child? Someone who only talks about trains or doesn’t talk at all? Are you expecting a mathematical genius or an individual who can’t comprehend social conversation? Are you expecting Sheldon Cooper? Rain Man? Or even Music Gamble?
I was 21 when I was diagnosed so I’ve heard this comment a lot, and, for me, it is particularly upsetting. I went unnoticed and undiagnosed because I didn’t ‘look’ autistic. I fought for over a year and required several professionals to confirm my diagnosis in order to have it recognised … and I still have people saying that I can’t be autistic. Because I didn’t ‘look’ autistic, I almost lost my life. I was suffering greatly. I was burning out from trying to conform to society. Yet I didn’t have the support, information or understanding to adjust my life to meet my needs.
I wasn’t aware that I was masking. I didn’t know that other people weren’t constantly, consciously choosing every little detail of how they present themselves at every second of every day. I wasn’t aware that I was becoming increasingly overwhelmed from sensory inputs like noise or textures of clothing. I didn’t know it was unusual to hurt myself almost every single time I tried to cook or find myself leaving the grocery store without food almost every week after ending up in panic and overwhelm. I was not aware that the reason I regularly forgot to eat was because I had poor interoception (an inability to sense the internal state of the body). I didn’t know there were other people who were like me and were far easier to form friendships with. I was not aware that these problems with day-to-day life had workarounds, that something as simple as wearing headphones could prevent me from wishing that I did not exist. That I could have a support worker to help with cooking, cleaning, shopping… just to help me with the necessities of daily living that I was failing to manage on my own.
When I hear “you don’t look autistic”, it’s not a compliment. Imagine if someone said to you, “You don’t look neurotypical”. If that sounds like an insult, then I’d challenge you to consider why that comes across as an insult. Whatever comes to mind when I say you don’t look neurotypical, well that is likely a negative stereotype that you believe to be true of neurodivergent individuals. When you take this into consideration and then look at the comment, “you don’t look autistic” as a compliment, you can see that it’s very backhanded.
Autism is a hidden disability. All of the challenges and traits that make up what we know as autism, are differences in the way the brain and nervous system functions. These are things that you cannot see and the traits that you can see, such as stimming, lack of eye contact, lack of gestures, etc. are traits that autistics are taught to hide. Autism doesn’t ‘look’ any particular way and when we hear that we don’t look autistic, it invalidates many of our differences and difficulties with coping in the neurotypical world. I might not look autistic but I still need support with it. I might not look autistic but I still need accommodations. I still want to be recognised. My hope is that I Am Autistic will help people understand autism as a spectrum and how its presentation can vary significantly among individuals. My hope is that my book challenges some of the stereotypes and gives information to those who, like me, are burning out from trying to fit in.
I am Autistic: An interactive and informative guide to autism (by someone diagnosed with it) written and illustrated by Chanelle Moriah (Allen & Unwin, $30) is available in bookstores nationwide.
