Four years ago, I was volunteering at the hydrocephalus center for a fairly famous hospital. I had been invited to sit in on an important meeting or procedure – I don’t actually remember which at this point. What I do remember is that I was going to be late. I remember the consuming sense of dread, rage and confusion increased with every passing minute I sat in my car. I couldn’t be late. I didn’t know how to be late. So I did the only thing that seemed sensible to me at the time: I turned the car around and went home. Then I didn’t speak to the doctor who had been kind enough to let me volunteer with him for a few months. I wasn’t trying to be rude. I just didn’t know what to say.
I have a better understanding of what happened now. Words like “meltdown,” “rigidity,” and “routine,” have entered my vocabulary. In most ways, an autism diagnosis has improved my life. I have a better understanding of why I feel, think and do certain things. As a result, I am better equipped to address life’s problems. If I feel ‘bad,’ I know what to do about it, or at least have some sensible guidelines. A friend is angry at me because I unintentionally said something offensive? I recognize where I have a limitation, which makes it a lot easier to talk the problem out. Difficulty falling asleep? A weighted blanket has me sleeping better than sleeping pills ever did. Do I feel anxious or distant? It might be a good time to pop in some earplugs and turn down the volume. Do I feel like the edges of the world are wobbling because of something that should be totally insignificant? Now I know why.
A friend who knew me before I was diagnosed once suggested that space aliens must have abducted me and replaced me with a better version of me in the year or so since then. I’m not offended; He’s right. I’m happier than I ever thought was possible because I have learned how to make myself happy. Even better, if I don’t know, I have a community of peers I can ask for advice. I had always assumed that my quirks and difficulties were some sort of singular, perverse strangeness that I hatched alone in the dark. It’s hard to express the amount of relief I feel knowing that when I have a problem, there is a community of people who will say, “yes, me too.”
The downside to all of this is that my childhood is now viewed almost exclusively through the lens of tragedy. I don’t get to have stories anymore. It all has to get wedged into a pathology framework. My tendency to wander away from softball games to find bits of grass that I found particularly interesting? That’s now, “absence of interest in peers.” That time in 7th grade when a boy asked me to the school dance and I didn’t understand that’s what he was doing until years later? That’s no longer the awkwardness of adolescence. It’s, “atypical or unsuccessful response to social overtures of others” and “deficits in understanding.” Stories my parents told at parties for years are now unbearably awkward. I don’t pick up on a lot of non-verbal cues, but it’s hard to miss the shame and guilt that creeps in halfway through what was once a humorous anecdote upon the realization that whatever happened was yet another unnoticed sign of my autism.
I don’t think my parents should feel guilty. I’m happy. I have a job I enjoy. I have a partner that I love very much and who loves me. I do want my stories back, though. Neurodiversity isn’t just about accepting that people have different kinds of brains. Neurodiversity is about embracing that people have different kinds of brains. Stories about my childhood are still stories about my childhood. My autism does not negate the validity or meaning of my experiences. It doesn’t matter if my childhood meets certain diagnostic criteria. It’s still a childhood like anyone else’s childhood. I want to have stories again, like anyone else.