PSA: Autism Doesn't Have A Look

International Day of Persons with Disabilities

In recognition of International Day of Persons with Disabilities, this is my PSA:

Autism doesn’t have a look, it has a stereotype.

“But you don’t look autistic!”
“I would never have guessed!”
“But you look so normal!”
“Wait, what??”

It isn’t always said with words, sometimes it’s the way they look me up and down, or the startled reflexive snap of their head doing a double take when I mention it.

And I get it, I did the same thing when I had my first encounter with someone who casually slid the fact that they were Autistic into a conversation. I spent the rest of the afternoon sizing them up, looking for clues, measuring their behavior against every stereotype I knew.

And then later that year I was diagnosed, late in life like the majority of autistic women born of my generation. It answered so many questions about my life experience.

You know why it seems like so many of us are getting diagnosed now?

It’s not some kind of fad, nor is it contagious. It’s not from a fucking vaccine, or red dye #44.

It’s because Autism has a stereotype and it’s based on early research of a small group of young white boys.

Autism isn’t on the rise, brain science, awareness, and the rate of diagnosis is.

Do you know why I didn’t seem autistic to you until I told you?

Maybe because I’m not a young white boy. Or maybe because you, like so many people, equate autism with obvious cognitive disabilities, or have the image of some exaggerated quirky character from a book or on tv in mind. Or perhaps you saw Dustin Hoffman in Rain Man. All of these examples have taken one trait of autism to the extreme for media appeal, they have entertainment value. Like the bearded ladies from the circus train, to be gazed at sympathetically, with curiosity and wonder. Safely from a distance.

Shamefully, as advanced as research has gotten in the study of the neurodivergent brain and ASD, the public at large still remains pretty clueless. There is still a dominant narrative being fueled by an industry that has milked the stereotypes for profit.

I’ve learned much from the Actually Autistic community since diagnosis, and in it I’ve found so many answers.

There is a movement happening to raise awareness that Autism is only considered a disability because the world is committed to misunderstanding us and refuses to accommodate our expressed needs. From my own observations, this is both woefully accurate and an oversimplified statement. Our needs and our traits are not always the same from day to day or from person to person.

There are common issues autistic people deal with as a result of processing and sensory issues central to the definition of autism. They affect each individual to varying degrees depending on circumstances, support, awareness, socioeconomic status, and wait for it—what people group you happen to be born to.

There are common traits that we all typically experience to varying degrees, but those traits, just like having blue eyes or brown hair, do not mean we all look and act alike. Or have the same needs.

There are common early life experiences; being bullied, or being deemed gifted in school, early/advanced readers, struggling to keep up by high school, labeled as lazy or not trying hard enough when the pace or sensory overwhelm of the average classroom causes us to struggle.

There are co-morbid health conditions people on the spectrum are prone to that cause true disabilities, long term and temporary.

So many answers for the mysteries of my life were explained by my diagnosis that I was excited to tell people about it in the beginning. A year and a half in, I find myself hesitating sometimes, because talking about it has come with a cost. I’ve lost opportunities, lost customers, lost people in my communities. Real emotional and financial costs.

On the flip side, hearing about my experience has been a lightbulb moment for many. The number of people who privately message to let me know what I’ve shared was the catalyst to their finally understanding their own experiences in life keeps growing.

Hence my decision for today’s PSA: Autism doesn’t have a look, it has a stereotype.

If we don’t talk about it and keep talking about it, the reaction we get and these stereotypes are never going to change.

Stereotypes are dangerous. They effect perception and acceptance. They move people from “fully human” to “other” category. Stereotypes and fear of the consequences of those misconceptions prevent us from being able to fully show up as ourselves and cause undue hardship when we express a need and are met with derision.

Acceptance is not a pat on the head with sympathetic hug emojis. Acceptance is treating others as worthy of love and respect.

Acceptance begins with open hearted listening, becoming aware of our own misconceptions and unconscious biases, acknowledges our mistakes, and makes a commitment to see each other as part of the fullness of the beautiful expression of all of humanity.

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