Bringing disabled women together, mobilising
and sharing through lived experiences

thank you to Cynthia Kim for allowing us to repost this (posted originally on 19 Nov 2014) –

At five, I wanted to be a boy. I don’t know what I thought being a boy meant. Maybe I thought it meant playing outside in the summer, shirtless and barefoot. Maybe I thought it meant not wearing dresses.

Dresses were all scratchy lace trim and tight elastic sleeves. Stiff patent leather shoes pinched my sensitive feet. Perfume tickled my nose. Tights made my legs itch and had maddening seams at the toes.

Too young to understand sensory sensitivities, I followed my instincts. While other girls favored frilly clothes, I gravitated toward the soft comfort of cotton shirts and worn corduroys.

Somehow, comfort got mixed up with gender in my head. For decades, “dressing like a girl” meant being uncomfortable. And so began a lifelong tension between being female and being autistic.

*

For a lengthy stretch of adulthood, I had an entire section of my closet that could best be described as aspirational. Pants suits. Dressy blouses. Pumps and sandals. Skirts, bought and worn once for a special occasion. Dresses, bought and worn never, before being spirited off to the thrift store.

I preferred ripped jeans and running shoes, hoodies and baggy t-shirts. Comfortable and comforting, just as they had been in childhood.

It wasn’t until after being diagnosed with Asperger’s last year that I learned about sensory sensitivities. Suddenly my aversion to dressy clothes, perfume and makeup made sense. A huge weight lifted. I’d spent decades wondering about my lack of femininity. Where other women seemed to revel in dressing up, I saw only itchy skin and painfully tight seams. Instead of making me feel glamorous, lipstick and eyeliner left me counting the minutes until I could wash my face.

Lacking the explanation that sensory sensitivities eventually provided, I spent decades feeling like I wasn’t a “real” woman.

Today I have four dresses hanging in my closet. Made of soft cottons and knits, they’re as comfortable as my worn hoodies and jeans. They’re not aspirational like my dresses of the past. I wear them when my husband takes me out on date nights. No makeup. No nylons. No tight pinching shoes. I’ve found a style that suits me, that makes me feel both beautiful and comfortable.

I’ve learned how to shop in a way that accommodates my sensory needs and I’ve learned that there is more than one way to be feminine.

*

There are many things I’ve had to learn or relearn over the past year. Mostly I’ve had to learn how to be autistic. That sounds like an odd thing to say. After all, I’ve been autistic all my life. But being autistic and knowing that I’m autistic are two vastly different things.

Knowing that I’m autistic has helped me to reconcile so many confusing aspects of my life. It’s as if I’m slowly reassembling the pieces of myself.

There are few role models for autistic women. There is no Rain Woman, no popular stereotype that comes to mind when you hear the phrase autistic woman. Perhaps that’s for the better. Stereotypes carry with them the burden of proving them wrong.

Still, we face hurdles when it comes to public perceptions of autistic adults. Again and again in my blog’s search terms I come across people searching for an answer to questions that surprise me.

Can aspie women marry? Can women with Asperger’s have children? Do aspies say ‘I love you”?

It seems we’re a mystery.

I hope that when people find my blog, they see that the answers to all of those things are yes. I’m married. I have a child. I tell my husband and daughter that I love them.

Sadly, that wasn’t always the case.

*

Women are expected to be intuitively skilled at social interaction. We are the nurturers, the carers. To be born without natural social instincts can leave you questioning your innate womanhood.

The first hint of what was to come arrived long before I’d given any thought to what being a woman would mean. At some point in sixth grade, many of the girls in my class became huggers. They hugged when they met each other and when they said goodbye. They hugged when they passed in the hallway. They hugged when they were happy or sad. They hugged and cried and squealed with excitement and I watched from a distance, perplexed. What did all this hugging mean? And more importantly, why wasn’t I suddenly feeling the need to hug someone every thirty seconds?

This was the first of many confusing conversations I was to have with myself.

I was a mother and wife for twenty-four years before I was diagnosed with Asperger’s. Over and over during that time, I questioned not only my womanhood, but my humanity. I questioned why I didn’t respond the way other women did to their children. I watched the other mothers tear up as the bus pulled away on the first day of kindergarten and felt guilty at my relief. Finally, a few hours alone, was all that was running through my head.

Looking back, I bet the other moms walked back to their newly quiet homes and felt a similar relief. The thing is, I never knew for sure because I didn’t talk with any of them. Beyond a friendly good morning at the bus stop, I was at a loss for how adult women socialized. I hovered around the fringes of social groups, watching as other moms made dates for coffee or shopping. They seemed so at ease, as if they’d all gotten the Mom Handbook while my copy had been lost in the mail.

I probably should have been envious but I was too busy being intimidated.

*

Unlike my difficulties with sensory sensitivities, Asperger’s provided an explanation but little solution when it came to socializing. I’ve had friends over the years, but not, it seems, in the way that other women do. Fortunately, I’ve made one friend who has been a constant in my adult life: my husband Sang.

Again and again as I was researching Asperger’s syndrome in adults, I came across bleak portraits of adult relationships. Broken marriages. Impossible-to-live-with autistic spouses.

Many of the challenges described in the literature were familiar. Our marriage certainly hasn’t been easy. But learning that I’m autistic has given us a new framework for understanding our relationship. Everything from why I find social outings exhausting to why I need to eat the same thing for breakfast every day suddenly had an explanation.

That understanding alone is a tremendous gift. People often question why someone my age would bother getting diagnosed. Especially someone who has a job, a family, a mostly settled path in life.

The explanation that comes with a diagnosis makes all the difference. For years, I knew something was wrong with me but I had no idea what. Most of the possibilities that I came up with made me feel bad about myself. Cold. Unfeeling. Immature. Selfish. Short-tempered.

Defective.

Getting a diagnosis swept all of those aside. Not only did I get an explanation for how I experience life, I got a user’s guide to my brain. It wasn’t an endpoint in my journey, but a starting place.

*

To be continued in Part 2 . . .

Cynthia’s book

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