My so-called autistic life

I waited almost 45 years to hear three words that changed everything. No, not “I love you”, but “You are autistic.”

“How do you feel?” The clinician appraised me.

I ran a hand through my rapidly greying hair and grimaced. “I don’t know...” I had suspected this diagnosis, after all, and asked my doctor for the referral almost two years ago. The panel of clinicians were experts in their field—in autism. They knew what they were doing, so who was I to argue? But like the astute murderer who finally gets caught when one seemingly unrelated detail slips, I was curious. What ultimately gave me away during the three-hour assessment.

Not one thing in particular, I learn, but the culmination of standardized tests, plus observation and a very detailed personal history. During one portion of the assessment, the doctors were not so concerned with the content of what I was saying but how I said it, my speech patterns and body language. Aha! Well played, Poirot!

The doctor asked if I’d felt stressed during the assessment, and I nodded. Afterwards, I had taken to my bed, inexplicably exhausted from sitting at a desk talking to strangers. For the rest of the day, I moved like a sloth. Like a druggie on a comedown. It was almost comical how tired I felt. I had not done a triathlon. I had not strung together strings of code or analyzed spreadsheets. Instead, I had explained the steps involved in teeth brushing, described what happened in a picture book, and made up a simple “story” using inanimate objects. That last exercise almost did me in. I stared at the pen, plastic cup, paper clip, and squeeze ball in front of me, and my mind went blank.

History was repeating itself. Many years ago, I attended a writing workshop in London. The instructor gave us a writing prompt then told us we would reconvene after 20 minutes and share what we’d written. Limbs stretched and pens started moving all around me. I stared at my notebook. I waited a few minutes, and still, nothing came. My breath grew shallow. There was a pressure in my chest. Like a fist squeezing around my heart, tight, tighter. I threw my notebook and pen in my bag and hurried outside the building without saying a word to the instructor. In an alleyway, I leaned against the cool brick and dialled my husband. I thought I was dying but of course it was just a run-of-the-mill panic attack. I never went back inside.

Twenty years later, the pressure was mounting in my chest… over an exercise a kindergartener could do blindfolded. Really?

You are autistic.

I can’t be on the spectrum was my first thought. I couldn’t care less about planes, trains or automobiles. I haven’t watched a single Marvel superhero movie. I would rather have a root canal than attend Comicon. But autism is a spectrum, not a stereotype.

I have always loved music and books, yet my tastes aren’t exactly esoteric and I don’t collect obscure facts. Growing up, I read obsessively, but that was mostly to escape my home life. When I was around nine, a new stepfather and stepbrother dropped like bird shit into my life. There was no warning and no choice in the matter. There was a lot of arguing and slammed doors in those years. I retreated into the worlds of Atwood and Salinger. I liked being inside other people’s heads, with their thoughts and feelings clearly mapped out so I didn’t have to guess. Like any teen worth her weight in angst, I wore black eyeliner, raided thrift and army surplus stores. I could do moody and affected every bit as well as Angela Chase in My So-Called Life. I filled spiral notebook after notebook with terrible poetry and scrawled on the cover, Julia Freak. (Julie, I felt, was too pedestrian. Every second girl in the ‘70s was a Julie or a Jen, so Julia became my alter ego.) I had a friend, a good friend, and we drove around town smoking menthol cigarettes and listening to the radio while parked outside of the homes of the boys we crushed on. See how normal I was! Still, all the clues were there, if you looked at them in the right light. When weird turns into something maladaptive. Anxiety, depression, OCD. And you take pills and nothing really changes. And you manage to work at an actual job for a while, but you get sick so often your bosses don’t believe you. It’s all in your head, he said. As Fiona Apple says, “so’s everything.”

My son shakes his head when I tell him. You can’t have autism. I don’t have his kind of autism, he means. Mine is another variety altogether. Apples and oranges are both fruit, but that’s where the similarities end. You can’t compare a 12-year-old boy with a 44-year-old woman. And yet I feel certain that our respective autisms would intersect somewhere on a Venn diagram. For one, we share the same hypersensitivity to fabrics and smells. We are masters of making mountains of molehills. He tends toward explosion while I, on the other hand, can usually fake it, only to implode in the comfort of my own surroundings.

I trust the experts know what they are looking at when they look at me. And now the layers peel away and the curtain falls. Slowly, it starts to make sense. What I am is what I am. So what? So what is that maybe I can finally stop wondering why I can’t function in quite the same way as everyone else. Maybe now I can stop posturing and pushing myself till it hurts, till I get sick and shut down. Maybe I can be gentler and show myself the grace and compassion I would show a stranger. Maybe I will come across other Julia Freaks who have found a better way to live in the skin they’re in. Maybe.

I’m the same person. It’s just a label for a different way of being. But it’s also a Band-Aid on decades of hurt and confusion and isolation. It’s only by naming things that we can truly know them.