Tag Archives: menopause

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.

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

Monday Morning Musings (6/10)

E-book Released

I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults went live yesterday at Amazon.com. If you have a Prime membership and a Kindle, you can borrow it for free.

Thank you to everyone who helped me refine the cover art last week and cheered me on. That last mile was more difficult than I anticipated.  Now I need to do some promotion so I can get my giveaway idea off the ground. Strangely, I’m really good at promoting other people’s stuff and am probably going to be terrible at promoting my own.

Another Adult ASD Research Study

This week, I received information on two more research studies. If you live to fill out questionnaires, are over 18 and have an ASD diagnosis, read on. Both studies are by being conducted by Kathrine Birt as part of her Doctoral research at Deakin University in Australia. The goal of the studies is to better understand the impact of Autism Spectrum Disorder (ASD) diagnoses on intimate couple relationship development (in adulthood).

The first is a questionnaire that takes about 20 minutes to complete. To participate, you need to be over 18 and have an ASD diagnosis. You don’t need to currently be in a relationship to be eligible, but if you are in a relationship, you’ll be presented with additional and more detailed questions. (I’ve completed both questionnaires, because I like to be sure I know what I’m sharing information about.) More info about the first study is here.

Study number 2 is for adults with ASD and their intimate partners. Both partners must be over 18 and one must have an ASD diagnosis. The questionnaire for the individual with ASD takes about 30 minutes to complete. After completion, a link is provided for a second (10-15 minute) questionnaire to be completed by that person’s partner. More information about study #2 is here.

Note that for both studies, clicking the “continue to study” button on the first page takes you to a second page with more details about things like the type of information collected, how the information will be used and privacy protections.

Not Quite a Hippity Hop

This is my new exercise ball:

ball

I’ve been using the exercise ball at the gym after my twice-a-week workouts and decided I needed one at home. It’s a fun sensory toy and a good way to stretch and release the tension that I seem to perpetually carry in my upper back and shoulders. Once, a yoga instructor who told me that I carry my negative emotions between my shoulder blades. My slightly less interesting explanation is that I unconsciously put myself in awkward postures that create tension in my body, maybe as a kind of stim. The exercise ball is a good way to consciously check in with my muscles and release the tension so it doesn’t build up into nagging injuries.

Sadly, it doesn’t have a handle so I can’t hop around the living room on it.

Some Girl Stuff

Last week Asparagus Girl wrote a blog post about perimenopause and Asperger’s. Not much has been written about menopause by women on the spectrum so I was excited to see her tackling the subject. The post mainly focuses on mood swings, which should be called mood slingshots or mood boomerangs or something more violent and dangerous and in line with reality.Think PMS on steroids.

I’ve noticed an uptick in meltdowns over the last few years as my hormones become more wacky. I’m definitely more irritable, too, and sometimes I find myself in a strange, unpleasant moods for no obvious reason. There’s other stuff–some that’s TMI even for me–and taken together all of these changes have me wondering if women on the spectrum experience perimenopause differently from typical women. Not necessarily if we have worse symptoms, but if our funky brain wiring creates unexpected side effects of the hormone fluctuations that precede menopause.

Predictably, this isn’t any substantial research on autism and menopause. Like a lot of aspects of being an autistic adult, I’m finding the best source of information is other women who are going through or have done through the process already.