Motherness

You are autistic, the doctor says now.

Impossible. I can’t be on the spectrum is your first thought. I am not Rain Man, Sheldon Cooper, or even Temple Grandin. You have no visible quirks—well, none that you know of. You couldn’t care less about planes, trains, or automobiles. You’ve never sat through a single Marvel movie, and you’d rather have a root canal than attend Comic-Con. No offence to those who are into those things. Autism is a spectrum, not a stereotype, after all. And if anyone should know that it’s you, having spent the past 12 years raising a son on the spectrum.

The doctor ends the call, and for a long time you sit staring at the blank computer screen. So that’s that, then. Random scenes flash before you in your mind’s eye:

A brown-haired child in a strange bed, tossing and whimpering in the dark.

A young girl with her nose in a book, absorbing every word on the page while the world around her slips away.

A teenager picking at the skin around her cuticles until pearls of blood appear.

And, older now, in an ivory gown with ornate roses stitched to the bodice, smiling at the tall man with pale blue eyes standing beside her.

Cut to another scene—

Her naked in a Jacuzzi-sized pool, reaching into the claret water and fishing out a baby, pressing his small, writhing body to her chest. And later still: curled on the closet floor, her hair greyed at the temples, rocking and dog-panting in the dim light.

It’s hard to believe these girls and women are the same person. That they are all iterations of people you have been. Like a cat, you’ve had nine lives, or at least nine personas.

Maybe, it occurs to you, this is what autism is.

Ever since Austrian-American psychiatrist and physician Leo Kanner first described “early infantile autism” in 1943, the face of autism has been white, cis, and male. It’s not that autistic girls and women did not exist. We have always been here, hidden in plain sight. Unless we exhibit obvious cognitive and behavioural problems, our autism tends to go undetected. Given our presentation of autism can appear more “subtle,” we sometimes fly under the radar. Compared to males, the female autist tends to exhibit fewer stereotypical or repetitive behaviours. We may appear to be socially motivated and may even have friends. Those of us who are able to often camouflage or “mask” our differences, copying others and adopting interests that seem socially appropriate for our gender. In other words: we do what we can to fit in.

Research has shown that prolonged masking comes at a cost to mental health and can lead to low self-esteem, stress, exhaustion, anxiety, depression, even suicidality. Instead of autism, we are frequently diagnosed with depression, anxiety, or mood disorders, such as borderline personality disorder and obsessive-compulsive disorder.

Since diagnostic testing has historically focused on a single (male) phenotype, females did not fit these criteria and have therefore been undercounted for generations. The gender bias runs deep, with boys around four times more likely to be diagnosed with autism than girls. Fortunately, as understanding of the unique female phenotype continues to develop—with new research identifying significant differences in brain connectivity between the sexes—this bias is shifting.

When I eventually tell my son about the assessment, he shakes his head. “You can’t have autism,” Carson says. I don’t have his kind of autism, he means. And he’s right. My kind of autism is another garden variety altogether. Apples and oranges may both be classified as fruit, but that’s where the similarities end. There is no comparing a 12-year-old boy with a 44-year-old woman. And yet I feel certain that if plotted on a Venn diagram, our respective autisms would intersect. For one, we share the same hypersensitivity to smell, sound, and touch. We agree that jeans are made of sandpaper; clothing tags are razors. We are both highly anxious. Whereas Carson tends toward dramatic explosions, I can usually feign composure, only to implode later in the privacy of my home—or else I hold it in for so long that I get sick.

Faking it. I realize that’s what I have been doing my entire life. Armed with this new twist, my script begs to be rewritten. Entire plot lines and characters that previously didn’t make sense now shine with clarity. I’m not alone. In recent years, countless adults have experienced a similar autistic epiphany on the back of their child’s diagnosis. The apple doesn’t fall far, etc. It’s something which professor and leading autism researcher Simon Baron-Cohen describes as “a phenomenon.” Contrary to popular belief, it’s not that there are suddenly more autists in the world; there are simply more of us being diagnosed, particularly those who were previously overlooked: girls, adults, and people who are racialized. Forty years ago, only those with significant or intensive support needs were likely to be identified as autistic. Today’s net has been cast much wider. Awareness has spread. Diagnostic criteria have improved and expanded (and need to expand more).

So, how do I feel? Relieved. Angry. Sad. Afraid. Overwhelmed. I feel like Dorothy waking up from a dream I could have sworn was real.

Three words, and suddenly everything—absolutely everything—makes sense.

You are autistic.