At the Intersection of Gender and Autism – Part I

Note: This is my contribution to the Ultraviolet Voices anthology. It’s nearly 5000 words long, so I’m going to serialize it here over the next 3 weeks.  

 

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 . . .

P. S.  I’m having a rough week language-wise so I may be slow in replying to comments for awhile, especially on older posts, but I’m reading and enjoying all of them.

Unreasonable Goals

When I was researching language pragmatics for my recent echolalia and scripting post, I came across an IEP goal bank. For those of you who aren’t familiar with these terms, IEP stands for Individualized Education Plan, which is a personalized document that describes an educational program designed to meet the needs of a child who is enrolled in special education. It includes, among other things, information about current performance, annual goals, services, accommodations, and progress.

Presumably to make these unwieldy documents easier to create, there are databases (goal banks) of scripted goals and objectives (sub-tasks of goals). One can search the goal bank for items that can be inserted into a child’s IEP with a small amount of customization. Of course, I couldn’t resist digging through the databases to see what types of goals autistic children are being asked to meet.

It quickly became obvious to me that I, as a 45-year-old autistic adult, could not consistently meet many of the social and communication goals and objectives that autistic elementary school students are expected to achieve. As I kept digging, patterns began to emerge.  Continue reading Unreasonable Goals

Big Giant Giveaway: Books, Stim Toys, Chewy Jewelry

It’s been a year since I’ve done a giveaway and to make up for that long gap (and to celebrate the launch of Stimtastic) I’ve decided to give away a whole bunch of things this time.

First,  the rules:

  • To enter, do at least one of the following:
  1. Leave a comment on this post
  2. Reblog the Tumblr post announcing the giveaway
  3. Like or comment on the Facebook page status announcing the giveaway
  • Maximum of 3 entries per person (1 for a comment here, 1 for a reblog on Tumblr, 1 for a comment/like on the Facebook status)
  • The giveaway is open to everyone (over 18 or under 18 with parental permission), including those outside the US.
  • Giveaway ends Monday, November 24th at 11:59 p.m. EST
  • 10 winners will be chosen at random on November 25th. The first winner chosen will get first pick of the items. The second winner can choose from the remaining items and so on. The tenth winner will receive the remaining item.

Good luck!

Giveaway Items:

WINNER: Cecily Shaw 1.  2 Spinner Rings: Arrow and Infinity (your choice of size 6,7,8,9 or 10)

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WINNER: Pam Fikter 2. Chewable jewelry necklace and bracelet set #1 (your choice of colors):

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3. Set of 5 Building Block Highlighters

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4. Set of 3 Stim Toys

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5. “Nerdy, Shy and Socially Inappropriate” Book (Your choice of Paperback or Kindle version)

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6. Thinking Putty (Choice of Blue, Green or Lilac) and Gel Ball

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WINNER: Leah Kelley 7. Bike Chain Bracelet (Blue/Silver or Black/Silver)

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8. Chewable jewelry necklace and bracelet set #2 (your choice of colors):

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9. Dog Fidget Necklace and Paracord Keychain (Your Choice of 4 Colors)

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10. “I Think I Might Be Autistic” (Your choice of Paperback or Kindle version)

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Also, this will be the last substantial post about Stimtastic here so if you’d like to get notifications of giveaways, contests, etc. in the future, please go ahead and follow the Stimtastic BlogFacebook, Twitter or Tumblr.

Mindfulness in Miniature

This is my first attempt at writing a post using voice recognition software. For the past week I’ve been “training” Dragon Naturally Speaking. Or maybe Dragon has been training me.

You would think that voice-recognition software would be as simple as speaking (although that statement in itself may be an oxymoron for many of us). But the software is sophisticated enough that there’s a fairly steep learning curve–both in learning the commands and in learning to “write” by speaking. So far, I’ve primarily been using it for work tasks, which are straightforward and often scripted in nature.

Curiously, I’m finding that voice-recognition software makes the writing process both faster and slower. Faster, because my typing and in particular my ability to spell is hampering my writing considerably. Slower, because before dictating each sentence I have to pause and compose the words in my mind in a way that is very different from typing.

There’s always been something about typing that has felt like a direct connection between my brain and the words. Now, something is short-circuiting that connection. I’ve reached a tipping point where the effort to put the words into speech in order to create text is less than the effort required to type those same words. And this new process–both the relative ease and the slowness of it–has me thinking a lot about things like mindfulness and intentionality.  Continue reading Mindfulness in Miniature

Where Am I Going, Where Have I Been

Unlike the short story that the title alludes to, this post is about happy things.

August 2012

When I started blogging, it was scary to be writing about myself. I had no idea what me talking about me sounded like. At first I think I simply imitated the voices of other bloggers I liked, holding myself at arm’s length as a defense mechanism.

I probably shouldn’t have been as worried as I was. Few people read those early posts in real time. A lot of you have since mainlined the entire blog (in chronological order, no less), but at the time, I was mostly shouting in the wilderness.

There have been times when I’ve been tempted to go back and revise some of the early posts. I had little knowledge about autism and no right sounding as authoritative as I did. But I’ve let them stand as they are because I like the record they create and I like the evolution I can trace in my writing and in the way I’ve come to think about autism and being autistic. I’ve learned a lot in 26 months, some through research and self-examination, but just as much through the comments that so many of you have generously shared.

As the number of comments on each post has grown, I’ve come to see my writing as a conversation starter and I look forward to seeing what readers will add to my initial thoughts.

I’ve never been good at writing conclusively. Endings are my nemesis. Thankfully, blogging is suited as much to asking questions as to providing answers.  Continue reading Where Am I Going, Where Have I Been

Changing Seasons and Sensory Sensitivities

These past few weeks I’ve had a sensory comfort zone the size of a postage stamp. There are a few things playing into my increase in sensory sensitivities* and one of them is definitely the change of seasons. Transitioning from summer to winter or vice versa is surprisingly demanding.

I think the biggest factor is the constant sensory adaptation. During the winter and summer, the days are pretty consistent from one to the next. It might be uncomfortably hot or cold, but at least my body knows what to expect each day and dressing appropriately doesn’t require a lot of forethought.

Spring and fall, on the other hand, are filled with unpredictable days. Yesterday was t-shirt weather. Today I have on sweats and a thermal shirt. Three days ago I left all of the windows open overnight because it was uncomfortably warm in the house. This morning I dashed out of bed to close the kitchen window, which was open two inches and letting a cold draft in.

With each temperature fluctuation, I find my body struggling to adapt. Too hot. Too cold. Over dressed. Underdressed. It’s hard to find that sweet spot–a consistent, comfortable environmental and body temperature. For the average person, this probably isn’t a big deal. I imagine things like dressing in layers and putting on or taking off clothing as needed is a good solution.

The problem with that strategy is that thanks to wonky interoception I often don’t notice when I’m too hot or too cold until it reaches a level of mild to moderate physical distress. At that point, doing something about it requires not just taking off or putting on a layer, but lowering or raising my body temperature to a comfortable level again. Simply putting on a sweater isn’t a complete solution to whole-body shivering. Continue reading Changing Seasons and Sensory Sensitivities

Conserving Spoons

If you aren’t familiar with “spoons” in the context of disability, take a few moments to read Christine Miserandino’s landmark piece on Spoon Theory before reading this post.

——

Spoons, by nature, are a limited resource. They’re replenishable, but not on demand. Sometimes we get a new supply each day and sometimes we have to ration out spoons over many days before our supply is restocked. And there’s no spoon store, so forget going out to buy some if you unexpectedly run out.

Conserving spoons is an essential skill. The most obvious way to conserve is simply to ration. More things to do today than you have spoons for? Eliminate some stuff!

That works fine when your day has lots of padding. It’s relatively easy to cut out things like “go out for lunch with officemates” or “participate in 500-comment Facebook conversation.” You probably won’t miss them much. But what happens when you’ve got your daily schedule down to only the most essential items–literally just the things you need to do to make it through your day without getting fired, flunking out of school, or starting to grow exciting new cultures in the kitchen sink?

Not only do you have to start choosing among cutting out essential activities, but life can start to look pretty grim. Extreme rationing is not a viable long-term strategy.  Continue reading Conserving Spoons

Echolalia and Scripting: Straddling the Border of Functional Language

The Scientist and I went out to dinner last Friday night. It was the day after I’d taped my radio interview and I was feeling wiped out, so we decided to treat ourselves.

During the course of dinner, the waitress made many visits to our table, asking the questions that waitresses do.

How are you tonight?

Would you like me to bring any ketchup or hot sauce?

Is there anything else I can get you?

Would you like more water?

Do you want to see the dessert menu?

To every one of those questions (and perhaps others I don’t remember) I replied, “I’m good.”

“I’m good” made sense the first time and is an okay answer for the others, assuming I didn’t actually want more water or a dessert or need anything else. Except that I did want more water. I was just too tired to override the default script my brain had settled on and by the time I realized what had happened, she had disappeared into the kitchen.

Not a big deal. Someone else came around and filled our water glasses a short time later. If they hadn’t, I could have just told the waitress I’d changed mind and would like some water.  Continue reading Echolalia and Scripting: Straddling the Border of Functional Language

Melange Survey

We’ve arrived at the final set of survey questions for this round. Phew. These are the questions that didn’t seem to fit thematically in any of the other surveys. I wish I had a snappy title for it, but I ended up going with the obvious. Okay, maybe not that obvious.

You can answer here or anonymously at Survey Monkey

  1. Do you think you would have performed better academically if you hadn’t devoted part of your brain power to performing “normally”?
  2. What [stereo]typical ASD trait you lack would you want to have? Eg maths genius ;)
  3. Do you have a job or volunteer activity that you are particularly suited to because of your autism?
  4. Do you group letters on things like signs and license plates until you can get an even number?
  5. What can’t you still believe everyone doesn’t think?
  6. If you are interested in something typical for your gender (e.g. fashion for girls) are you interested in a different way? (e.g. hats not shoes or historical costume rather than being “bang on trend”)
  7. Do you think some of the appeal of a favourite subject/special interest is that immersion in a topic acts as priming making it easier and more comfortable to remember and think about it? Do you have trouble remembering facts on demand for other subjects you aren’t spending time on even though you know it and find it interesting?
  8. Do you have difficulty concentrating when listening to radio/audio drama?
  9. What was the most helpful thing after you received your diagnosis? Why?
  10. Do you dislike wearing jewellery?

one woman's thoughts about life on the spectrum

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