What It's Like for Me as a Woman on the Autism Spectrum
My name is Cass, I’m a 30-year-old graphic designer and I have high-functioning autism spectrum disorder (ASD). Like some other women on the spectrum, I wasn’t diagnosed until adulthood. It was recent; in fact, it was only last year. It’s still very much a secret as well. I had no intention of telling anyone, but my husband accidentally “outed” me to my mum, so then I tried to tell one of my sisters and then I gave up on telling my family. Both my mum’s reaction and my sister’s reaction to the news was immediate and negative: “No you don’t have autism.” My sister called it a pathology. I was so hurt.
I tried a few close friends and they had similar reactions. All of them said things like, “I don’t see that in you” and expressed general disbelief. So I gave up telling people. My husband consoled me that it should be enough for me just to know, and not to look to others to validate what I know to be true. I married a wise man. So I stopped telling people. My other two sisters don’t know, my in-laws don’t know, the majority of people who know me wouldn’t have a clue. Being a designer does tend to give you latitude for being a bit quirky; I guess I chose my camouflage well.
My husband on the other hand was amazing, as he so frequently is. When I told him what my psychologist suspected, and what in myself I knew for certain, he was reflective. I could almost feel him working it through, then in his quiet way he said exactly what I needed: “I think that fits, too. How do you feel about it?” You see, he’d become something of an unofficial expert on autism. Our 4-year-old son had been diagnosed with severe ASD (among other things) nearly two years earlier.
What I don’t think people realize about women on the spectrum, especially high-functioning women, is that sometimes we can mimic and model behavior perfectly. I can only speak for myself, but I know that my “social mask” was in place by about age 16. If you met me now at a party or out socially, I would present as a highly social, outgoing and self-confident woman, and as much as I would like to be that way, I’m not. I struggle daily with things like anxiety, self-confidence, selective mutism, OCD, ridged thinking and trying to cope with situations that are unpredictable or out of my control. I’m photosensitive, struggle with crowds and too many different noises at the same time, and I’m funny about textures.
Professionally I struggled. Why call someone when I can email them? I took criticism, even in its most constructive and valid forms, as a personal attack. As one of my roles as a designer, I had to attend social networking functions that involved public speaking and making small talk with what seemed like a never ending sea of people. By the end of one of these functions, I’d go back to the studio, talk nonstop at high speed for about an hour and then I wouldn’t utter a single word for the rest of the day. If someone talked to me I wouldn’t hear them, it was like static on a TV ringing in my ears. I now know this is a sensory meltdown, and I try not to put myself in situations where this can happen. Even attending dinner in a crowded restaurant, lots of ambient noise, table conversation and close quarters will leave me needing frequent bathroom breaks or trips outside for space.
Motherhood is a challenge for me (like all mothers I know), and I struggle with the little things. I struggle to go with the flow and can get panicked and anxious if the baby wont sleep when she’s supposed to or feed when I think she should. I love my routine and I need the safe predictability of knowing what’s next. I envy those mothers who seem to instinctively know how to mother; it really doesn’t come easily for me. I honestly spend all my mothers’ group catch-ups watching other mothers interact with their children, so when I go home I can try it out with my kids. I also have a predisposition to post-natal depression and anxiety.
Having a diagnosis of autism was a relief for me. It allowed me some freedom and allowed me some room under my stifling mask to breathe. It was the beginning of a celebration. Not all people with autism are savants, act like Rain Man, can fix your computer or have language delays. Some of us just struggle with the little things in life. If someone you know tells you they think they may have autism, don’t be dismissive. If they are like me, it took a lot of courage to own it enough to say it out loud and make it real.
It’s hard to describe the things that make me different from your average woman, wife, mother, professional. The older and wiser I get, the more confident I grow in my own skin, the more I’m letting my quirks show. I want to be the best possible role model for my children, and for me that means celebrating my unique Aspie quirks, the good and the challenging.
My name is Cass. I don’t like peas because they roll and touch the other food on my plate, my tea must be made at the exact moment the water boils, I can’t sleep with the wardrobe door ajar, I hate how my husband squeezes toothpaste from the top of the tube and I rub my feet together to soothe myself when I’m stressed (I’m doing it right now)… and I have high-functioning autism spectrum disorder.
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