Category Archives: Aspie and Female

At the Intersection of Gender and Autism – Part 3

The final post of a three part series (read Part 2)

 

While many of the intersections of autistic and female in my life have been social, there are undeniable physical intersections too.

The arrival of adolescence brought with it hints of what it would mean to be an autistic adult. My first real meltdowns. My first experience with depression. My first confusing encounters with physical intimacy.

With nothing to compare those experiences to, I assumed they were a normal part of being a teenager. Everyone said that being a teenager was hard. I couldn’t dispute that. It didn’t seem necessary to look beyond the explanation of “this is hard for everyone.”

That would become a theme. Pregnancy. Breastfeeding. Postpartum depression. My body’s reaction to birth control pills. Countless books and magazine articles assured me that these things were no walk in the park. Not knowing that I was autistic, I had no idea that I might be having a rougher time of it than the average woman.

It wasn’t until I hit menopause–and the hormonal fireworks that come with it–that I finally realized something was different. Not just with how I was responding to the hormonal changes of perimenopause, but with how I was coping with life in general.

At first, I had no idea that perimenopause had begun. It creeps up slowly and because I was barely out of my thirties, the word menopause wasn’t part of  my vocabulary. What I noticed, instead, was that I was having a lot of difficulty coping with the daily demands of life. It was harder to concentrate on work. I wasn’t sleeping well and felt tired all of the time. I was moody and quick to cry over the silliest things. But the most surprising development was a new resistance to socializing. Being around people I don’t know well had always been uncomfortable, but suddenly it felt exhausting.

Ultimately, thanks to the hormonal changes of perimenopause, my autistic traits became too obvious to ignore. This led, in a roundabout way, to my realization that I’m on the spectrum. And that feels like a fitting sequence of events, because the cognitive challenges of menopause are turning out to be much greater than the physical symptoms. Yes, the irregular periods and night sweats and sleep disturbances are hard. But it’s what’s happening in my brain–the way “the change” is changing my cognitive function–that’s taken center stage for me.

Forgetfulness, concentration problems, anxiety, fatigue and mood swings are often listed among the “other symptoms” of perimenopause. Thanks to my autistic brain, I already experience those things to a greater degree than the average woman. Menopause has ramped up the intensity, but I’ve had years to develop coping strategies.

The “symptom” I’ve been struggling the most with is one that you won’t find on any typical list of symptoms. Three years into perimenopause, my language processing has developed some glitches. When I write, I leave out words and make odd substitutions. Speaking is an adventure in trying to remember which noun I’m looking for.

At first, I thought maybe my brain was broken in some new and scary way. When I blogged about my worsening language glitches, I was stunned to hear from dozens of autistic women in their forties and fifties who had similar experiences. Other discussions on menopause revealed more common ground. I wasn’t the only who was suddenly tired of the effort it takes to pass for “normal.” I wasn’t the only one having more meltdowns or struggling to cope with day-to-day responsibilities. There were a lot of “me too” replies, too many for them to be a coincidence.

The autistic female body is fundamentally different, it seems. We start out with an atypical baseline. Add in hormonal fluctuations and we get Menopause: The Deluxe Bonus Edition. Thankfully, I finally have what I lacked during those other hard stages of my life: community. I have other women–women like me–whose experiences I can look to for comfort and wisdom.

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Throughout my life, being autistic has shaped my experience of being female. But how has being a woman shaped my experience of being autistic?

Because I’m new to being autistic–that is, to knowing I’m autistic–this is a harder question to answer. My autistic traits are an indelible part of me and always have been. Whether I was aware of them as autistic or not, they influenced me at every stage of my life. Now that I recognize their autistic nature, I can look back and see how they have made me who I am.

Perhaps the greatest impact of gender has been that it helped to cloak my autism. I grew up in a time before Asperger’s existed. Children of my generation were much less likely to be diagnosed with autism if they could speak and were in a mainstream classroom.

My teachers realized early on that I was different from the other kids. They labeled me gifted and designed a special curriculum to keep me busy. They enrolled me in the town’s gifted classes. They tasked me with helping out the reading specialist and the librarian. They even tried to skip me over a grade, a move that my parents wisely blocked, reasoning that my already painfully shy nature would put me at too big a disadvantage with kids two years older than me.

Even as an adult, autism was a hard explanation to consider. I skirted it for years, buying into the Rain Man stereotype, not seeing myself in the descriptions of boys who loved airplane engines and men who had no social lives. It wasn’t until I discovered Tony Attwood’s writing that I realized there is more than one way to be autistic.

Girls can be autistic too. In fact, there was a detail in Dr. Attwood’s book that made me gasp out loud. In explaining how autistic girls often have interests that appear to be the same as typical girls, he described how one of his patients liked to play with Barbies, but instead of making up pretend scenarios for them, she enjoyed lining up the dolls and their clothes.

I felt like I’d been struck by lightning. I had a huge collection of mostly hand-me-down Barbies and their clothing and what I most loved doing was laying all of the items out on my bedroom floor and sorting them by type. I had far less interest in dressing the Barbies or sending them on dates than in ensuring that each of them had exactly the same number of dresses and pants and shirts and shoes. I could spend hours sorting and distributing their clothes. Once that was done, I’d play with them for five minutes and pack everything away until next time.

If an adult walked by and glanced in my room, they would have seen a little girl playing with her dolls. Only if they’d watched carefully would they have noticed that I did the exact same thing every time. Classic autistic behavior camouflaged in a girly disguise. If I’d been a boy with a love of sorting batteries or radio parts, my autistic traits may have been more noticeable.

As girls, we learn to hide in plain sight. We hover at the fringes of social groups, giving the impression that we have friends. We sit quietly through years of school, creating the illusion of shyness. We let older girls take us under their wings, mothering and mentoring us in the social skills that they sense we’re lacking. We learn that there are rules and we set out to master them as best we can. We learn that we have roles to play and we struggle to fill them, often at the cost of our self-esteem.

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Coming to understand that autistic girls and women have somewhat different traits than autistic boys and men made it clear, finally, that there was a place on the spectrum for me. Not only that, there were other women like me, other women who shared similar traits and experiences.

I’d spent decades feeling like I was an anomaly and suddenly here was an entire community of people who understood.

As I’ve read the experiences of other autistic women, I’ve come to realize why autism is described as a spectrum condition. As autistic people, we share much in common but we are also different in many ways. No one is autistic in exactly the same way that I am. This has given me permission to be me–to see myself on the broad spectrums of womanhood and humanity–and to embrace myself as I am.

I’d like to say this is a done deal–I’ve accepted myself and now I can move on, brandishing my shiny new self-image. Perhaps that will be the case one day, but for now, I am a work in progress. Each time I think “yes, this is it, I’ve got it now” I soon find myself unpeeling a new layer, discovering some aspect of myself that I’d tucked safely away.

In the past year I have rediscovered the joy of stimming. I have unearthed a playfulness within me that I thought was lost. I have begun to learn how to share my feelings and speak up for myself and identify my wants and needs. I’ve opened up doors inside me that I was once frightened of even approaching.

There is a joy and a terror in this kind of self-discovery that is akin to the best roller coaster ride ever. Again and again I find myself nervously climbing that first hill, anxiously anticipating the first drop and then, finally, with a shout of joy, giving myself over to the thrill of the ride.

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.

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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.

Continue reading At the Intersection of Gender and Autism – Part I

Taking the Aspergers Quiz

I discovered a new Aspergers quiz that wasn’t around (AFAIK) when I did the original Take a Test Tuesday series. At first I was excited because it says that it was created by an MD who is on the spectrum and the range and wording of the questions looked good at first glance.

Unfortunately, that’s about all there is to like about it. I’m hesitant to link to the site because of the way it talks about Aspergers. Lots of pathologizing language and functioning labels and pandering to the search engines along with some blatant misinformation. It’s also visually overwhelming and loaded with ads.

Consider yourself forewarned if you want to check it out anyway.

The Aspergers Quiz

The Aspergers Quiz website says that the quiz was created by Dr. Logan Cook from the University of Michigan. My Google-fu failed to turn up any further information about Dr. Cook or any research the quiz might have been based on, so I’m assuming that it’s based solely on the creator’s anecdotal evidence or personal experience. If that’s the case, it’s the only AS “screening” quiz that I’ve reviewed here that isn’t based on any sort of statistical analysis at all.

The site states upfront that it’s an informational quiz and not diagnostic, which is good. But it also presents the results in terms of a “percentage chance you might have Asperger’s”, which in the absence of any underlying statistical testing, is completely baseless. Answering a screening quiz 75% positive is totally different from having a 75% chance of having a condition. It’s great that there’s a disclaimer at the top of the page, but giving a specific percentage result at the end of quiz without disclosing how that percentage was arrived at is irresponsible.  Continue reading Taking the Aspergers Quiz

Autism and Menopause: More Questions Than Answers

When I first realized that I was starting to experience the symptoms of menopause, I went in search of more information. The first thing I learned is that I’m not experiencing symptoms of menopause but of perimenopause, the period (heh) before menopause when a woman’s body starts producing less estrogen.

Menopause is the hormonal finish line; perimenopause is the roller coaster ride that gets you there.

There’s plenty of information out there for women experiencing all stages of “the change” but, of course, nearly nothing specifically for autistic women. I don’t know if autistic women experience menopause differently. It sounds like a difficult time for most women, with a lot of variation in symptom type and severity, so it’s hard to say if what I’m experiencing is different from the norm.

What caught my attention, though, is the overlap between some common traits of ASD and symptoms of perimenopause. Many autistic women–myself included–already struggle with sleep problems, temperature regulation, forgetfulness, mood swings (irritability, depression, anxiety), and fatigue.

My biggest question is will this make menopause less difficult because I have coping strategies in place that I can ramp up or will it make it more difficult by compounding my existing difficulties? A couple of years into this grand hormonal adventure, I feel like it might be a combination of the two.  Continue reading Autism and Menopause: More Questions Than Answers

Beyond The Talk: What Else Autistic Girls Need to Know About Puberty

This was originally posted at a group blog that I’m part of: We Are Like Your Child. It primarily addresses parents of young autistics, but I’m reposting here because I thought other autistic adults might have helpful tips to add or their own wishlist of things they’d known about puberty.

One request: if you talk about anything traumatic, please reference it obliquely. There are some younger readers here now and I could see others finding this post in a search for autism and puberty or adolescence.

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When it came to puberty, my parents did what many parents in the seventies did: they gave me a book about puberty written especially for girls. It was a slim cranberry hardback with an ambiguous title like “Everything is Changing.”

I was a voracious reader, so I would curl up in my beanbag and scour the pages for clues to the mysterious changes that were on the horizon. I think I had many of the same fears, anxieties and curiosities about puberty as my friends had. Certainly my body went through the same changes that other girls experienced. However, I think there are some areas where girls on the spectrum would benefit from additional information or guidance. That’s what I’m going to focus on in this post.

Many of the issues I want to touch on also apply to boys. I’m specifically addressing the issue of puberty in girls because I was once a girl and I raised a daughter. Girls are my wheelhouse. If you’re looking for information about boys, I hope you can adapt some of the ideas below but, honestly, boys are a mystery to me.

adolesence

In addition to talking to your autistic daughter about all of the things parents normally cover when talking about puberty, consider discussing the following when you feel the timing and circumstances are right:  Continue reading Beyond The Talk: What Else Autistic Girls Need to Know About Puberty

When Being a Good Girl is Bad for You

Increasingly, experts are realizing that Asperger’s in girls looks different from Asperger’s in boys. Some thoughts on what that means for girls on the spectrum . . .

I was raised to be a good girl. This meant, above all, being seen and not heard. Don’t bother the adults. Don’t make waves.

And this was mostly fine with me. As a child, I spent hours and hours alone. Some of my happiest memories involve going on long bike rides, exploring in the woods, and playing games in my room, all by myself. I remember quite a few fiercely contested games of Risk and Monopoly that pitted me against myself.

My parents never questioned what I did for hours in my room with the door closed. If I disappeared for the afternoon into the woods behind our house, their only concern was that I be home by five-thirty for dinner.

I don’t know what would have happened if I came home at six. I was a good girl and good girls followed the rules.

But the problem with being the good girl, especially if you’re a young undiagnosed aspie, is that good girls are invisible. Aspie boys tend to act out. They have problems with anger management. They’re defiant and oppositional. They’re not team players. They shrink away from competition and refuse to follow the rules.

Years ago these boys got slapped with labels like “juvenile delinquent” and “behavior problem.” Today, out of every ten children diagnosed with Asperger’s syndrome, eight will be boys and two will be girls.

The big question raised by this disparity is: are boys more likely to be aspies or are they just more likely to get diagnosed because their symptoms tend to fit the classic manifestation of AS?  Continue reading When Being a Good Girl is Bad for You

one of these things doesn’t belong here

an introductions of sorts . . .

When I was in elementary school, my younger sister used to watch Sesame Street. At 7 or 8, I felt too grown-up for a show about talking puppets but I secretly loved the “one of these things doesn’t belong here” game.

Once on each show, someone would sing:

One of these things is not like the others,
One of these things just doesn’t belong,
Can you tell which thing is not like the others
By the time I finish my song?

If you’ve never seen it, here’s an example:  Continue reading one of these things doesn’t belong here