The Feminism of Autism: Why it was so Difficult to Realize that I’m a Girl with Asperger’s

I would have textbook female Asperger’s if ‘textbook female Asperger’s’ was a thing, but it’s not, because all the textbooks are written about males.

Disclaimer: This post includes a lot of comparing women and girls to men and boys, however, any time I describe something as being more common in one compared to the other, it is a generalization, based on differences between average expression of a trait between males and females. Most of these conditions will not be true for every single individual person; there’s just far too much variation among us humans for any rule to accurately apply to us all.

What image does your mind conjure up when you think of Autism? Sheldon Cooper? Rain Man? A little boy who’s completely socially awkward and obsessed with trains or physics? That’s the sort of image that most people have, and it’s certainly the kind I had growing up. It’s also the kind that I feared the psychologist had a few weeks ago when I, a nineteen year old (relatively) fully-functional girl, was finally doing an autism assessment, something that I had been consciously waiting for for two years, and subconsciously waiting for for my entire life.

I know, it seems like a strange thing to look forward to, but while we conventionally see getting diagnosed with something like autism spectrum disorder as a negative thing, for me, it was a long-awaited source of validation and freedom.

My realization that I was very different from most people (like, different on a clinical level) started during my first year of high school, when after a summer of listening to Green Day’s Boulevard of Broken Dreams on repeat and spending long, insomnia-ridden nights obsessively doing research to figure out what was wrong with me, I identified that I was depressed, and decided that I needed to consult a psychologist. It took a few months, but at 15, I did start seeing a psychologist, and I fully expected her to diagnose me with and attempt to treat me for a particularly eccentric case of major depressive disorder.

To my surprise (and initial horror), after getting to know me she instead suggested that I had ADHD, a notion that I found not only ridiculous but demeaning. I knew what ADHD was; it was for kids who couldn’t sit still, whose highest marks were in gym and who couldn’t pay attention to anything in school, not for the reserved, book-obsessed, knowledge-hungry people like me.

Or at least, that’s what I believed it to be until that afternoon, when I started reading about what ADHD really was. I found that not only was it a much more complex concept than I had thought, but after reading lists of symptoms that included the lesser-known ones, it pretty much perfectly described me.

While this isn’t a post about ADHD, for the record, the term “attention deficit hyperactivity disorder” is a complete misnomer that contains pretty much no truth. The “attention deficit” part is complicated; it’s not so much that people who are labelled with ADHD can’t pay attention to things, but that it’s incredibly difficult to pay attention to things that we don’t believe are important or find interesting (I call this having a built-in BS-detector). The plus side is that when we are interested in something, we can hyperfocus on it.

The hyperactivity part is also more of a stereotype than anything else; there are three official recognized types of ADHD. The one that most of us picture is the “hyperactive” type, but there’s also the “inattentive” type, which features more low-key forms of “not paying attention,” like daydreaming, as opposed to physically moving around and acting out. The third kind is the combined type, which has elements of the two distinct ones.

I, like most girls who are diagnosed, was labelled with the inattentive type. One of the most troubling things that I learned about ADHD was just how rarely girls do get diagnosed, largely because most people don’t even know that the more subdued, inattentive type exists.

Everyone from teachers to doctors, and even the psychologists who are supposedly experts in this area, know how to look out for loud and disruptive behaviours that are obviously problematic, but most are not aware of how differently it can show up in girls or that the generally more calm symptoms are from the same condition and make life just as difficult as the more obvious ones do. While boys typically get diagnosed as children, it’s not uncommon for women to be even older than I was before the suggestion of ADHD or another neurodiverse condition comes up.

This discovery of my ADHD totally changed my perspective of myself for the better; I understood myself on a level than I never had before, and school became so much easier. The more I researched ADHD and other mental conditions, the more sense my life made.

In grade 11, I discovered the concept of neurodiversity: the idea that neurological conditions like autism, ADHD, learning “disabilities”, some forms of OCD and anxiety, and arguably even some cases of bipolar and recurrent depression, are in fact not inherently disorders but normal, natural variations in neurology, and that these things have only traditionally been considered disorders because our societies typically consider anything that’s different from the expected norm wrong and dysfunctional.

By this point, I had realized just how much of the difficulties in my life were due to these atypical neurological traits, which had gone unnoticed because I had become so good at blending in and avoiding drawing attention to myself. I had always felt a bit of a connection to Asperger’s*; every time I saw a portrayal of it on TV, whether it was a more stereotypical character like Sheldon or a more realistic one like Max Braverman from Parenthood, I felt this panging sense of seeing a member of the world that I belonged in.

As a kid I always felt different and awkward, even though I didn’t seem like it on the outside. I had been identified as gifted, and was naturally good at math and logical reasoning, and was super sensitive to sound – all stereotypical traits of autism. But I also assumed that because I was okay at talking to other people, I wasn’t a complete loner, and no one seemed to notice how different I was, I didn’t have enough autistic traits to actually be on the spectrum.

It wasn’t until the end of grade 11, when the ADHD diagnosis really started to feel insufficient and I became more motivated and confident in my search for an explanation to why I didn’t seem to fit in anywhere, that I got beyond that assumption. On one particular night when I was 17, in a search for some much-needed self-realization, I came across this checklist of female Asperger’s traits, which included so many of my characteristics and pretty much every social and academic issue I’d ever faced, as well as this description of traits which nearly brought tears to my eyes because it was like reading an immaculately accurate description of myself.

I finally had answers to so many questions. Letting myself read those lists and just acknowledge how much I identified with them was one of the most validating experiences of my life.

Like with ADHD, I learned that autism often looks quite different in girls and women than it does in boys and men; so many of the accurate, well-known traits that actually do show up in boys, like having singular special interests, are either expressed less extremely or are non-existent in girls. The main common pattern is that, like with ADHD, traits are less obvious and girls manage to hide them more easily.

While boys are described as “professor-like”, girls are more “philosopher-like”. Boys tend to be drawn more exclusively towards non-fiction whereas girls are more likely to escape into fiction and vivid, imaginary worlds. The most significant difference is that, due to a combination of biological characteristics and social conditioning, girls tend to very effectively learn to mimic the behaviour of people around them, which allows us to mask our symptoms and often appear to be neurotypical.

This is why I didn’t get diagnosed as a child. By blending in, I protected myself from being treated differently, but it also meant that parents and teachers didn’t know that I needed to be treated differently.

This seems to be a common pattern for women in general; when we have problems, we naturally express them in quiet ways rather than loud ones. When we’re overwhelmed, we take that dysphoria out internally rather than externally, and when things in our systems aren’t working, we implode rather than explode.

While this saves us from the consequences of other people seeing us differently, it also means that we don’t get help or different treatment when we should.

When autism and Asperger’s syndrome were first defined in the ‘40s, they were believed to only affect boys. Overtime, girls have increasingly been included in the definitions and in research, but the vast majority of research on autism is done exclusively on males due to lacks of female participants, which means that most of the official sources of information on it only account for the male expression of it.

The result is that autistic girls are very, very underdiagnosed. Because people aren’t used to seeing autistic women, when a woman does search for a diagnosis, clinicians don’t tend to assume that she’s autistic when she is, so in addition to the underdiagnosis problem, misdiagnosis with mental health conditions, especially bipolar and BPD, is also ridiculously common. While getting diagnosed with those things when you actually have them can be life-saving, it can have quite the opposite effect on people who don’t have them, and it brings them that much farther from getting an accurate diagnosis.

Though I now know all of this, during my entire childhood, when I thought that I was different and that I might be on the autism spectrum – that I was right – that it takes way longer, sometimes decades longer, for women to be accurately diagnosed with neurodiverse conditions than it generally does for men, and that the current system allows for so much haphazard misdiagnosis, I still find myself asking why the hell it had to take so long. Why do I have to work so much harder to figure out how I fit into the world than I probably would if I was male?

I haven’t gotten the results of my assessment yet. Part of me doesn’t want to because I’m so afraid that after the mere hour and a half of talking to me, the psychologist won’t have seen enough of my true characteristics to decide that I fit the criteria for autism spectrum disorder, and then this thing that meant so much to me, that symbolized a turning point in my life, will end up meaning nothing.

But ultimately, no matter what, it won’t end up meaning nothing, because I’ve already gotten through the important part. I’ve already managed to see past all the misinformation, from the pharmaceutical company propaganda to the well-meaning gender-biased studies. Despite it all, I found the answers that I was looking for, so I’m going to forget about the rules that say that I need to rely on the same inequitable system to validate them.

*Asperger’s Syndrome is technically no longer an official diagnosis; since the 2013 release of the fifth edition of the DSM, which is the book that defines what mental disorders are officially recognized and how to diagnose them, all forms of autism fall under the single diagnosis of “autism spectrum disorder”. That being said, I’m going to continue to use the term “Asperger’s” because as an idea I think it’s still relevant, especially to my story. Also, I despise the DSM for a number of reasons regarding both its concept and its execution (but that’s for a different blog post).

By: @soniaanhedonia

#2018 #soniarandhawa #treatment #mentalhealth #autism #inclusive #feminism #feminist

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