Supporting women with Autism Spectrum Disorder

ABC Life / By Jodie van de Wetering

It’s not often you see someone with autism spectrum disorder in mainstream media. And when we do, these characters tend to be male, nerdy and single. Think Rain Man, Sheldon Cooper and various mean-spirited memes. Now, though, it really feels like things are changing. Women with autism are more present in writing about the condition, research, advocacy and public speaking.

And in a great sign that society’s concept of autism is evolving, we’re meeting different genders and sexualities. In the show, the adorable first-date couple, Chloe and Lotus, mention they were diagnosed at 11 and 12 respectively. That’s late, considering specialists like to get stuck into early intervention before a child turns six, but they’re still babies compared to women whose conditions aren’t being picked up until their 30s, 40s and beyond.

For a long time, research into autism and what we knew about how it presented was largely based on men and boys, meaning girls miss out on diagnosis and therefore miss out on support they need until they’re too old to access it.

Since autism as a concept is still relatively recent, in many ways we just don’t have the framework in place to support an adult autistic population. Yet.

Finding the light after years of stumbling in the dark

“It was like taking off a corset I didn’t know I had been wearing. I could finally breathe,” she says.

Maura reflects on the how autistic women get missed in her contribution to the anthology Spectrum Women: Walking to the Beat of Autism.

Maura says there are a range of reasons why women with ASD can be missed.

“We are more socially adept and less rigid than our male counterparts, so we tend to fly under the radar. We are better at masking our challenges and blending in … we may be perceived as simply shy.”

I was in my mid-20s when I was diagnosed, and am now sneaking up on 40 (except thanks to my dodgy balance and motor skills, it’s less a ‘sneak’ and more a ‘clumsy stomp with sporadic crashing into door frames’).

I’d seen psychologists before with no result — I just left feeling like I couldn’t even ‘do’ depression properly — and was down to my very last overstretched space-saver-tyre of a nerve.

So I rocked up with a laundry list of every symptom I could think of, every weirdness and quirk and personal failing that made me different from the rest of the world.

From shyness to friendlessness to obsessing over children’s TV shows, to not being able to sit still, to inexplicably breaking down into tears every time people started talking over each other. (Auditory sensitivity. Who knew that was a thing? Not 25-year-old me, that’s for sure.)

By sheer luck, I found myself crying and shouting my list at the one psychologist in town at the time who’d worked with autism specialist Tony Attwood, and who got adults on the spectrum. He let me rattle off my long, long list, and then he asked:

“Have you heard of Asperger’s syndrome?”

For me, it was less like a corset loosening, and more like finding my way out from under a thick, hot, itchy, woollen blanket. After years of stumbling around in the dark, uncomfortable and disoriented and bumping into things, it was fresh air and light and lightness.

A couple of months after my diagnosis, after a series of swings and misses in online dating, I had an I’m Going To Die Alone moment. So determined was I to find someone, I contacted an actual old-fashioned done-by-human-beings matchmaking service.

I considered Hans Asperger personally responsible for the skip fire that was my love life at this point. So when the onboarding interview turned to disability, I made it clear I wanted my potential matches to know I was on the spectrum.

“Oh, no,” my matchmaker cooed. “That’s only for real disabilities. Like, if you’re missing an arm or something.” So limb difference is a deal-breaker, but an incurable and not-entirely-understood neurological condition that affects every aspect of my life… isn’t?

(I’m still single at time of writing, but my disastrous dating attempts have become great material for my side hustle as a stand-up comedian, so silver linings.)

Being a human in this weird era isn’t easy, especially if you’re towards the edges of the bell curve. But finding out who we are, what we are, and how we fit into the world, makes the whole thing so much easier.

Jodie van de Wetering is an autistic writer, performer, and generator of creative mayhem based in Rockhampton, Queensland.