Yes, really. I am autistic.

When I first tell people that I am autistic, I usually get some variation on the same reaction:

“Oh, really? I never would have guessed.”

“Well it must be mild then.”

“I don’t think of you that way!”

“I mean, you’re not really that autistic. My cousin/brother has a child who doesn’t even speak.”

Despite the best intentions of the people giving them, these responses range from benign to profoundly unhelpful. There’s a few common misconceptions that run through these and similar responses, which I address below. I hope this gives the non-autistic friends and family of autistic people a clearer lens with which to see us autistics, and myself in particular.

Neurology is not Disability

Autism is a little tricky because it’s both a neurodevelopmental condition and a disability. Everyone with autism shares common neurological traits, but how we experience these and our degrees of disability vary widely. Here’s the thing: we’re all autistic. We all experience the world in unique, and often challenging ways compared to people without autism.

For example, I am sensitive to noise, particularly when trying to focus. If interrupted by a coworker’s voice, I usually jump in shock. If deep in concentration and someone is trying to talk to me or get my attention it can be physically painful. I am also sensitive to light — in the evenings I can become extremely irritable, sometimes angry, until I enclose myself in a dark place, at which point I’m overcome immediately by peace.

It’s more difficult for me than most people to guess at others intentions, and when they hide them, it’s extremely difficult to build and maintain trust. I miss nuance, hints, and suggestion, which makes me pretty much totally inept at reciprocal flirting. I communicate directly — and don’t know how to effectively communicate any other way — which has led to many instances of me being perceived as rude or insensitive.

All of these things (and many, many more) add up to a unique experience of the world — being autistic — but most are not visibly disabling. Autism is a unique way of experiencing the world, and a disability, and the disability is often hard to spot at first glance.

How I appear to you is a tiny slice of my experience of life

Much of my experience of autism is invisible — hidden from view. Like the iceberg above, you are only privy to a tiny piece of what it means for me to be autistic in the world, and it’s often a misleading piece.

For example, my voice typically comes out as flat and somewhat monotonous, which would seem to indicate I am less prone to experience intense emotions. In fact — the opposite is true. I often experience intense euphoria when listening to music, and am brought to tears by many of my favorite movies.

Not Disabled Enough

Ouch. Not gonna lie, this one stings a bit. It seems many people have internalized the notion that you must be above a certain visible threshold of disability to qualify as being autistic. For example, you must be non-speaking, aggressive, or intellectually disabled.

In addition to being simply wrong [1] — autism can co-occur with intellectual disability, but usually does not, and most autistic people are speaking — this treats autism solely as a disability, and not as a unique neurology, way of experiencing the world, and piece of our identity that it is.

It also belittles the challenges faced by autistics who are not visibly disabled or have lower support needs, who actually have higher rates of co-morbidities such as anxiety and depression than their visibly disabled counterparts [2], precisely because their challenges are ignored. Autistics as a whole also overwhelmingly report social isolation — at rates almost double that of the general population. None of this is to minimize the challenges faced by autistics who are more severely disabled than myself — their challenges are real, unique, valid, and deserving of care and accommodation.

Most importantly though, autism is a fundamental part of who I am. The autistic label, community, and identity is my birthright and no one has the authority to strip me of it. Please respect that.

Listen and acknowledge instead

To my non-autistic peers, I hope this has given you a better understanding of who I am and what it means for me to be autistic. If you see yourself in the unhelpful responses above, I want you to know that I get it — this is counterintuitive. Honestly, I was surprised at the depth of my reaction to these types of comments. I ask that you treat yourself with the compassion and forgiveness that is your birthright as a human being.

If you find yourself now confused and wondering what to say instead — listen and acknowledge this piece of my identity that I just shared with you. Ask questions, be curious, and listen.

To my fellow autistics, I hope this has helped give voice to some of what you feel. What do you think? How has your experience been different? I’d love to hear from you!

[1] Thurm, Audrey, et al. “State of the field: Differentiating intellectual disability from autism spectrum disorder.” Frontiers in psychiatry 10 (2019): 526.

[2] Lord, Catherine, and Somer L. Bishop. “Recent advances in autism research as reflected in DSM-5 criteria for autism spectrum disorder.” Annual review of clinical psychology 11 (2015): 53–70.