Note from the author: I wrote this before the neurodiversity and autism acceptance perspective was part of our community discussions. While I didn’t have the terminology from autistic advocates, I felt this lack keenly in the wider world. It speaks to that issue from a parent perspective. We all want our loved ones to be seen for who they are, and for all autistics to be celebrated for what they bring to the spaces they inhabit. And that can’t be done if we aren’t, fundamentally, seeing autism.
No matter where I am or who says it I freeze up when I hear, “He doesn’t look autistic.” I smile and fix my gaze, my mind racing through possible responses, but in the end allowing awkwardness to grow. There’s back tracking and qualifying on the speaker’s part which thankfully opens up a window through which we have a conversation. One that ends well, but leaves me wishing I could have said more or better, or simply done this whole advocacy part of parenting with autism differently.
In my quest to uncover why I have this response, I talked with other autism parents. I’ve learned I’m not the only one that hears the doesn’t-look-autistic comment (or its cousin, “He has autism? I never would have known”), nor am I the only one who has issues with it.
So why the issues? Are we being oversensitive? After all, many say it’s meant as a compliment and respond accordingly. And I get that. I really do. I wish I had the grace to accept it as one. But it doesn’t inspire gratitude in me, so “Thank you” just won’t come out. To me, if it’s a compliment, it’s kind of a backhanded one. A true compliment would be, “He looks like he’s doing great.” No, this is a loaded comment.
This comment essentially negates all my son’s hard work and strips him of his finest qualities – his strength, his determination and his heroic ability to be present despite constant struggles. Plus it drags behind it the subtle accusation of a “wrong” diagnosis. And that accusation is a bit insulting, not just to my son, but to me as well. As if, somehow, I got this all wrong.
There’s a lot of baggage to unpack behind this type of comment. As one parent told me, her immediate internal reaction is, “What does that even mean?!” We feel unable to respond to “He doesn’t look autistic,” because we struggle to understand the intent behind it. Do we launch into a monologue about stereotypes, defend the diagnosis, feel proud, or snap a quick, “What does autism look like?” It’s a lot to sort through.
But, mostly my reaction is an emotional one, hidden behind those more intellectual quandries. I freeze up because I’m taken right back to the days when I was overwhelmed by worry. The days when my concerns were dismissed with a glib, “Let’s wait and see,” or, “He’s fine” and, “He’s just smart, don’t worry.” Those days when my stomach would flip, my heart race and my hands shake when I saw my son struggle mightily to do things other children did with ease. Those days before the diagnosis when I was utterly alone in my fear and worry. I supposedly had nothing to worry about, but there I sat, drowning in it.
And this goes to the core of what autism awareness is all about. That early diagnosis which is so critical to life-long success. It is the autism that goes unseen in doctor’s offices and preschools, on playgrounds and in homes across the country. We’re not seeing it because we can’t look beyond the myth of what “disabled” looks like.
I don’t want people to look at my son and see only a disability. Reduce him to a label that acts as a screen through which they cannot experience who he really is. Yet, they cannot really know him without seeing autism too. It’s how his brain works and, well, that’s pretty huge. This inability to see him as a whole person, one that includes autism, shows how important awareness campaigns are.
Part of Autism Awareness month is doing away with stereotypes and opening up our eyes to seeing autism when it’s right in front of us. It’s about allowing individuals who identify as autistic to embrace that label. For me, it is not a compliment to be told that my son doesn’t look autistic. He does look autistic because he’s part of the mosaic that makes up our collective picture of autism. To deny that is to reduce the diagnosis to a caricature. And that reduction has consequences that are far-reaching.
I don’t always feel like educating everyone that says, ”He doesn’t look autistic.” So sometimes I don’t put on that advocate hat. I just smile, let the awkwardness grow and change the subject. I hope that the speaker lets that awkwardness clear their vision so they can really see my son. Because if they do, they’ll see what autism looks like. It’s bright, it’s charming, it’s puzzling, and it works incredibly hard to be there, present, before them. It’s there, waiting to be seen.