Divergence

There’s a podcast called The Loudest Girl In The World, hosted by Lauren Ober. The show concerns Ober’s autism diagnosis at 42, as well as her experience dealing with this information and opening up to others about it. When I listened to it last summer, I related pretty heavily to what she was talking about. I’ve also started to make peace with how my own brain works in the last few years. It’s been a rough road, though.

I was diagnosed with what was then known as Asperger’s syndrome when I was 8; this was even before it was in the DSM-IV. The old name’s fallen out of favor now that the DSM-V calls it Autism Spectrum Disorder (ASD); as well, Hans Asperger, the scientist who observed the condition, was working for the Nazis. I highly suspect there’s ADHD in the mix as well, but back then it wasn’t believed that was possible to have both. As well, autism was mostly seen as a male disorder until recently. I have to wonder if some of this relates to how masculinity is dominant in social hierarchies; any failure to live up to the ideal is pathologized and considered something to be subjugated.

I was fortunate enough that this happened when my family lived in Manitoba, which offered a bit more in terms of support than many places at the time, but back then, there wasn’t a whole lot of information and research about the condition. There also weren’t that many people with diagnoses who had reached adulthood yet, let alone who were speaking for themselves. Even now, the resources for autistic adults are insufficient.

A diagnosis in childhood has a different effect than getting one later in life, and for many, having this knowledge helps them figure out how their brains work differently. From my experience, having the label was still very othering. I felt boxed in by it for the longest time; a lot of disability narratives are dehumanizing, giving short shrift to our ability to grow as people, as if the skills or knowledge we have are purely accidental, and that we are to be pitied or infantilized instead of engaged with as an equal. I also hate how disabled people are underestimated to the point where their managing to accomplish a mundane achievement is seen as exceptional (this is called “inspiration porn”). I am a complicated being, and as much as my brain wiring impacts my life, I don’t want to be reduced to a fixed list of deficits.

Things weren’t too bad at first, but by grade 5, other students’ tolerance for difference starts to disappear and the prevailing message in the classroom is “be normal, or else”. To be fair, I could be quite disruptive, but I’m not here to recount every traumatic incident from my childhood and adolescence. The city of Selkirk, Manitoba may not have been a great place to grow up neurodivergent, but I don’t think there are many places that would have been, especially back in the 1990s. I also made more of an effort to blend in as I got older, though I don’t know how successful I am at it.

The imposter syndrome can be bad. Sometimes I feel like there are things that I’m not supposed to have, like relationships or gainful employment, and that it’s only a matter of time before I’m found out and I lose whatever measure of agency or autonomy I have in my life. We don’t mask our neurodivergence because we want to; it’s often something done unconsciously in order to survive, especially by those who didn’t get a diagnosis until adulthood. We can learn to play the game, but never quite get the rules right. We make ourselves as small as possible, and do it for so long that we wonder whether people actually know us or just our masks.

Neurodivergence makes the whole process of day-to-day life pretty exhausting. There’s a certain amount of routine socializing and sensory input in any given day; it may not be distressing, but it involves constant processing, calculation and mitigation. I know that I need the time and space to recharge, but it’s difficult to balance this with the things I want to do. If I’m not careful, I burn out. I have the desire to feel connected to and understood by other people, but fear revealing too much of myself; I’m awkward as fuck unless I’m particularly comfortable around someone. Interestingly enough, a lot of people I’ve known for years have been getting diagnoses of ASD and ADHD in adulthood; that probably explains why we’ve gotten along so well.

I worry about the future, especially since fascism is on the rise, and anyone considered deviant or deficient is punished. I’ve seen it in the discourse about trans people, with some believing that somehow autistic people aren’t able to make informed medical decisions for ourselves. Donald Trump (no friend to trans people himself) has said he wants to reopen the mental institutions if he gets a second term. I wonder where that leaves autistic people, especially since his political bedfellows aren’t too keen on the whole concept of “civil rights”. Are they going to declare anyone with an autism diagnosis legally incompetent, stick us under conservatorships, and warehouse us away? I can just hear him now, reading “We have to get rid of autistic” semi-comprehendingly off a teleprompter in his toxic wheeze of a voice. He could also make us the next scapegoat for the culture wars, especially since some of the people who’ve committed mass shootings had diagnoses. I may live in Canada, but what happens in the States tends to spill over the border, especially now that the potential next prime minister is courting the same far-right crowd.

I’m trying to stop comparing myself to other people. I’ve conceded that I probably will never have my shit together; this isn’t defeatism so much as accepting that it’s not something that should be a precursor to my own happiness. I’ll probably always be a bit of a hot mess, and I need the space to be one.

easier said than done sometimes