‘Autism’ Is Not A Bad Word’
How Being Diagnosed in my Late Thirties Changed the Way I Look at Labels
In my work as a Pediatric Occupational Therapist, I have worked with many Autistic children and their families. There is almost always an aura of anxiety surrounding the parents, as they face the possibility and/or reality of having a child with Autism. I often hear parents say they are worried about “labeling” their child. Somewhere along the way, they picked up the idea that by giving children an Autism “label” we are somehow taking away their ability to become successful human beings. I would argue that while there may be some truth to this, it is only because a massive stigma still exists, and each time we deny a child whom we know is Autistic (or even might be Autistic) that label, we perpetuate the stigma.
I get it. I grew up in the same ableist society as the rest of you. I was trained in the same medical community that never even considered the possibility that Autism could exist in females until very recently. (As it turns out, girls CAN and DO have Autism, it just doesn’t always present itself in the same ways as we are used to seeing in males. For decades we have been using diagnostic criteria based on research conducted solely on white male children. So naturally, more people in that demographic have been diagnosed than any other.) I work in the same public special education system that still treats the word ‘Autism’ as an expletive that we have to substitute with cringey euphemisms. The fact of the matter is: a person is Autistic regardless of whether or not they are diagnosed or even realize it. Autism isn’t something people grow out of it, as we once assumed. As undiagnosed Autistics, we may not have the language to explain why we are the way we are, but we know we are different and spend entirely too much of our lives just trying to seem “normal” and figure out what the heck is wrong with us.
For those parents out there who are struggling with whether or not to have their child diagnosed or aren’t yet talking openly with their child about their neurodivergence, I ask that you please consider how powerful having that sort of language to frame one’s life can be… To be able to put words with the feelings and know that you are not alone.
Imagine yourself walking by a group of people you know and they’re all laughing hysterically. Suddenly they notice you and all get quiet. (I’m assuming this is a phenomenon that almost every human being has experienced at least once in their lifetime?? No? Just me?) You didn’t hear what they were saying, so you have no actual evidence, but you can’t shake the feeling that the joke might have been at your expense.. And even if it had nothing to do with you, it’s still evidence that you are solidly on the outside of whatever joyful bonding experience those people were having without you. Because if they had wanted to include you, surely they would have.
Now imagine that this feeling of being on the outside looking in happens pretty much most of the time you are around other people. Throughout your life, there have always been only a few select people you have truly felt comfortable around and could just BE, without the ever-present, nagging anxiety of knowing you weren’t in on the joke, or worse… you WERE the joke. But over the years, you’ve burned many of those bridges, the ones leading to the safe people. Usually with it having been made clear that you were to blame, but at the same time you were not given a clear explanation of what exactly you had done wrong. You must have broken some unspoken rule you weren’t aware of, or spent too much time oversharing, were too needy, or too self-absorbed, cried one too many times, or you were just plain “too much.”
Most interactions with new people or acquaintances tend to go one of two ways: 1.) people either don’t get your (hilarious) sense of humor or can’t tell when you’re joking and they take you way too seriously OR 2.) You find yourself struggling to be taken seriously when the situation calls for it, whether it’s as a professional, as a parent, as a consumer/customer, as an adult, or even just as a human.
This is the best way I can explain, in MY personal experience, what it feels like to go through life as an undiagnosed Autistic/ADHD person.
I still feel this way as a middle-aged adult. Except I don’t feel like an adult at all. Which is one of the things I told the therapist I sought out during Covid lockdown, that probably led her to “nudge” me towards the realization that I am Autistic. As a kid, adults always commented on how “mature” I was for my age. Now things seem to have shifted to the opposite extreme… It felt like everyone else had matured and I was still 17, walking around pretending to be a grown-up, waiting for the day when someone would discover that I’m an imposter. As I told my therapist at the time, I felt like I had never learned how to manage my emotions. I would break down over little things I knew were silly to be upset about. But the only explanation I could come up with was that I was “overwhelmed by life.”
Discovering that I am actually Autistic at age 38 felt like finally exhaling after holding my breath for three decades. It made so much sense. I still feel awkward most of the time, and I am still easily overwhelmed, but for the first time in my memory, I don’t feel broken.
I now understand that my nervous system and brain work differently than most, and I would never want to change that. Do I struggle with things that seem to come easily to other people? Yes, and it’s frustrating. Do I wish I wasn’t so beyond-next-level clumsy that I constantly have bruises that could have happened any number of ways?? Absolutely. Wouldn’t I love not to forget how to perform even the simplest of tasks the moment I realize someone is watching me do it? Sure. (Do I like answering my own questions?? Sometimes.)
One of the many reasons that my autistic traits were never identified as such, is because the people around me would see them as personality quirks… “That’s just Amy.” As it turns out, most of my little Amy-isms can be attributed to either my Autism, ADHD, or both. But at the same time, they are still a definite part of my personality. Just like anything else, there is bad that comes along with the good. In order to “fix” all those things that I don’t like, you would have to change the way my brain operates… and I would stop being ME.
Being able to finally solve the mystery of “Why am I the way that I am?” has given me the sense of self that I have been missing since adolescence. The reasons that my neurodivergence went unidentified for so long are numerous and nuanced, and frankly deserve their own piece(s) of writing, so I won’t get into all that now. But thanks to books, podcasts, and the internet, quickly after realizing my neurodivergence, I learned that, not only was I not broken, I wasn’t alone. There are actually LOTS of other people out there who, like me, are discovering their neurodivergence in adulthood. And that, to me, has been invaluable.
