I waited almost 45 years to hear the three words that changed everything. Not “I love you,” but “You are autistic.”
The doctor appraised me through the laptop screen. “How do you feel?” His words circled my head like gulls.
I ran a hand through my graying hair. “I don’t know. Surprised, but also not surprised.”
My diagnosis was a long time coming. I had suspected it, hadn’t I? Otherwise I never would have requested a referral almost two years ago. The panel of clinicians who’d assessed me were experts in their field: autism spectrum disorder. At the word “disorder,” I bristled.
The doctor asked if I’d found the process stressful, and I nodded. Three hours of observation, standardized tests, a grueling personal and medical history. Afterward, I had taken to my bed, inexplicably exhausted by sitting at a desk talking to strangers.
It was almost comical how tired I felt. I had not done a triathlon. I had not pieced together strings of code or analyzed data on spreadsheets. All I had done was list the steps involved in teeth brushing, describe what happened in a picture book, and make up a story using random household objects. That last exercise almost did me in. I stared at the pen and the plastic cup for several seconds. My mind went blank, and my heart raced with panic. It was all I could do to stay in the room.
You are autistic.
I can’t be on the spectrum was my first thought. I am not Rain Man or even Temple Grandin. I have no visible quirks — well, none that I know of, at least. I couldn’t care less about planes, trains or automobiles. I’ve never sat through a single Marvel superhero movie, and I’d rather have root canal than attend Comic-Con. But autism is a spectrum, not a stereotype. I should know this after raising a son on the spectrum for the last 12 years.
I have always loved music and books, yet my tastes aren’t exactly esoteric, and I don’t collect obscure facts. As a kid, I read obsessively, but that was mostly to escape my home life.
When I was around 9, I acquired a stepfather and a stepbrother I never asked for. Hence I retreated into the worlds of Atwood and Salinger. I liked being inside other people’s heads, with their thoughts and feelings so clearly mapped out I didn’t have to guess. I wore black eyeliner and filled spiral notebook after notebook with terrible poetry, with “Julia Freak” scrawled on the covers. My angst was in no way exceptional.
When I tell him about my diagnosis, my son shakes his head. “You can’t have autism,” he says. I don’t have his kind of autism, he means.
Mine is another garden variety altogether. Apples and oranges may both be classified as 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 touch as well as to certain noises and smells. We are both masters of making mountains of molehills. Whereas he tends toward explosion, I fake it, only to implode later in the comfort of my own surroundings.
Faking, it seems, is a problem. The ratio of autistic girls to boys has long been placed at 1 to 4. However, in 2017, a meta-analysis of past studies found the ratio was actually closer to one girl to every three boys, indicating a significant gender bias.
The fact is, girls have long slipped through the cracks because autism research has historically been geared toward boys. Savants and little professors. Autism looks markedly different in females. We are often notoriously good at hiding our quirks in a desperate bid to fit in.
Case in point, I don’t like eye contact any more than my autistic male counterparts, yet I have trained myself to do it so convincingly that most people wouldn’t even notice. I don’t flap my hands or walk on my toes, but you will probably catch me compulsively picking at my nails and cuticles.
When I tell him about my diagnosis, my son shakes his head. ‘You can’t have autism,’ he says. I don’t have his kind of autism, he means.
When I was 18, I shaved my head on a whim simply because my hair was irritating me. At various points in my life, I have been prescribed antidepressants. For 40 years I couldn’t shake the feeling that something about me was off, yet I struggled to pinpoint what that something was.
You are autistic.
Ghosts of friends and lovers past haunt me like in that Dickens book. Unlike my son, I had friends growing up, though I was often needy and wanting to please them at any cost. I often felt lonely and rejected, with no idea what I had done wrong. Names I’d been called; jokes I had missed… I longed for an interpreter in my native land.
Social gatherings — even those I looked forward to, like birthdays and Christmas — ended prematurely. Overwhelmed, I inevitably took ill and would be sent to bed in a dark guest room while my family laughed and opened presents in the next room.
And yet through it all there was music and art and printed words on the page. I wandered into books and songs like woods so dense and lush that I got lost for hours, oblivious to the world outside. A university boyfriend once got so frustrated waiting that he abandoned me in the poetry aisle of a bookstore. For a long time I didn’t even notice he had left.
You are autistic.
Autistic girls grow up to be autistic women. If we don’t call it autism, then we call it depression and anxiety or some other mental illness, which raises the question: Are anxiety and depression symptomatic of autism or simply a byproduct of years spent trying to hide who we are?
If we can recognize autism in girls and provide them with support and a positive sense of self early on, perhaps such mental health concerns can be avoided. I hope things are different for this next generation of girls. I hope they don’t grow up feeling lost and alone, perpetually wondering what is wrong with them and why they don’t belong in this world.
In her book, “Women With Autism,” therapist Claire Jack concedes that a late diagnosis for women has a largely “positive impact on their confidence and self-esteem.”
I’m glad I got my diagnosis — better late than never. I’m the same person. Ultimately my autism, like my son’s, is just a label. But labels serve as a Band-Aid on decades of hurt, confusion and isolation. It’s only by naming things that we can truly know them.
While I try not to dwell on the past (because that would be unproductive, not to mention masochistic), I do look back on that girl inside the woman. Now that the mask has dropped, I see her clearly. I understand her better than I did for the first 40 years of her life, and I vow to treat her with more care and compassion for the next 40.
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