My Beautiful Brain
So! I’ve gone back and forth about whether to write this little essay or not. Obviously, I’ve landed on “yes.” But why I’ve decided to write it… well, I’m not so sure about that.
Over the years since I published A Boy Called BAT, I’ve had lots of people ask me if I have an autistic person in my family. This felt, frankly, like a not-okay thing to ask; autism is a medical diagnosis (for better or for worse) and medical diagnoses have been used against me and loved ones as grounds upon which to deny medical coverage (definitely for worse). It felt… dangerous to share such information in a public forum.
Also, since the book’s publication, I’ve seen people cite BAT as “proof” that a non-autistic person can write well and genuinely from an autistic character’s POV. This felt icky and sticky and wrong, and I didn’t like it, and I pushed back some, but again, for reasons of privacy and also because I am a RULE FOLLOWER and also very private (well, weirdly, I vacillate between being very private and then abruptly telling complete strangers way more than they want to know about me), I didn’t say much.
This is where the RULE FOLLOWER in me came in: Bat is me. I wrote Bat because I have felt and done so many of the things Bat has done. I haven’t (yet) raised an orphan skunk kit, but I sure would if I had the chance! But the other things—the sensory sensitivities; the miscommunications; the fascination to the point of compulsion with the things I love… these things are mine. But as a child of the 1980s and a girl, though I was labeled by teachers as someone who had a hard time finding and keeping friends and as “not living up to my potential” and, by other kids, as “weird,” no one ever labeled me as autistic. So, because I hadn’t been given such a name from an expert, it felt inauthentic to me to share my own deep understanding of how my brain functions (my beautiful, wonderful brain! I love my brain!).
Also, I worried that people would think I was lying or that I was making something up to help sell copies of my book. And inauthenticity makes me itchy on the inside of my skin. So, (though it definitely would have helped me to sell copies of my book), I didn’t say anything. (A note: I don’t think that someone who hasn’t had a lived experience can’t do a good job of writing about that experience. I think, actually, this is one of the main functions and joys and challenges of writing. But that’s another essay.)
Well, due to a series of events that I won’t go into as they involve other people, about six months ago, I finally decided to be assessed for autism. I worked for five weeks with a clinician, and at the end of our time together she said: “Elana, you are autistic.” She said there are two “buckets” of qualifications—one must meet all the markers in bucket A and two of four markers in bucket B in order to be diagnosed as autistic. I meet all the markers in both buckets.
How did I feel upon receiving this diagnosis? Vindicated in having been correct in my instincts… and nervous that people will think I am faking if I tell them.
This is something you may not know about me: I operate from a baseline of fear. Almost all the time, I am afraid. There are good reasons for this. Some of them are related to my absolute love of being alive and my deep despair about my own future death. Some of them are traumas I’ve endured at the hands of men. Some of them are the results of just existing in a female-presenting body. Some of the are due to childhood and family traumas. Some of them are, I believe, epigenetic trauma, passed down through my family of Holocaust survivors. But I’m afraid, all the time. Sometimes, several times a day, that fear crests into a white-foam wave that carries me away—for a few seconds, for a couple of minutes, now and again for even longer. This can happen when I am awake or asleep. When the fear isn’t cresting and carrying me, it’s still there, buoying me up, holding me, like saltwater.
So. To the “why” am I sharing this now. I guess the answer is: because inauthenticity makes my skin itch on the inside; and because I’m hoping that sharing it will help break this particular wave of fear. And also because I am proud of my beautiful, perfect, strange, complicated, imperfect, creative, terrified, loving, capable, forgetful, expansive, autistic, mortal brain.
Love,
Elana
