Autism, labels as tools, intersections with other parts of who I am, and FAQs.
Today was the first day in 2 months that I did not have a bowl of chocolate cereal and milk for at least one meal. Most people don't know I've been doing this, and a few of those who do expressed shock and concern because they didn't know why. So here's a fun fact / piece of information about me: I'm autistic!
I've been considering this for about 2-3 years now as a model that neatly explains a lot of things about me, and although I've tried to have conversations with various people about it at various points, it wasn't until early this year that I really started seeking advice and community in a serious way.
I want to use this post to answer some FAQs and talk about the journey!
I'd be wrong to suggest that labels haven't played a big role in my life. As a child without the word "bisexual," I went back and forth between IDing as a lesbian and thinking, well, I must not be a lesbian because I'm not exclusively attracted to women. Woman was not a label I felt particular affinity for but for a long time I didn't know anything else was an option, but when I eventually discovered the label "agender," I found it felt like home.
Most of my life I've been pretty aware of my verbs (liking people of all genders, feeling no gender, recovering after social interactions, hurting from sounds, etc.), just not my nouns, and discovering the nouns that fit my verbs opened up new worlds, mostly in terms of being able to explain myself to other people.
A lot of things about me seem to really confound people. I can hear, so why would I struggle to follow movies without subtitles? Surely my closing my ears and running away when I hear certain sounds just means that I'm trying to get attention, not that it physically pains me, even when I say so. If I seemed to be able to grasp things, clearly the only explanation for me dropping them all the time was that I was being careless, not that I was having any issues with my hands. And consistently throughout my life, I have perplexed people with how bad I am at getting non-literal language.
I think my favourite example of this was earlier this year when I missed something like 3 jokes in a row that a friend made. This friend is autistic but I hadn't yet brought up my autism. They looked at me and I just threw my hands in the air and said, "I don't know, I just don't get things sometimes," and they said, "Do you realize you're not getting things more often than an autistic person?" and I had to say, well, about that...
Autism is a noun that explains many of my verbs - verbs that I had mostly accepted as just who I am, but that, for other people, are imperative to point out or disbelieve or even make fun of.
I would love to live in a society where I could just ask for the subtitles to be turned on and they were just turned on, but since we instead live in a society where I'm required to declare a justification for my divergent needs and behaviours, the label of autism is a tool to avoid hurt.
Kimberlé Crenshaw's framework of intersectionality is popularly interpreted as there being x, y, z variables (gender, race, class, etc.) and your oppression being some sort of linear combination of the oppression you face in any one of those variables. This interpretation is not just superficial but it's also entirely incorrect, as many people much cleverer than me have repeatedly pointed out.
Her framework is actually about how intersections of identities create unique experiences, privileges and hardships that often don't exist outside that particular intersection. It has been a useful lens with which to consider my experiences since I first heard about it and it's been particularly interesting to think about how autism fits in here.
I was brought up as a girl, which has interesting consequences for what my autism journey has looked like. Fact: Young girls are much less likely to be diagnosed with autism than young boys. A popular explanation offered for this is that girls just "have it less," but this is not a great argument. For starters, the medical profession has a long (ongoing) tradition of privileging the bodies of white men in their research and their symptom descriptions. Secondly, gender socialization starts very early and can strongly incentivize "masking," a survival strategy for autistic people to basically "pass" as neurotypical.
The other consequence of this in a world where autism diagnosis and medicalization is geared so strongly towards children, is that if no one picks up on it when you're a child, then official medical diagnosis is basically out of reach. I looked up the wait times for an adult autism diagnosis in Canada once and it was something like 3 years.
All this means that there is a large community of people who discover that they are autistic in their adulthood and self-diagnose instead of jumping through years of bureaucratic hoops only to potentially be dismissed anyway. After all, not having a piece of paper from a prejudiced system can't possibly invalidate your lived reality of sensory issues and communication difficulties.
Interestingly, literally every autistic person I've spoken to has validated my self-diagnosis (or even clocked me as autistic!) regardless of their own diagnosis status, and it's only allistic people who say things like, "Oh, you can't possibly be autistic," and "Self-diagnosis isn't real." I think it is easier to be uncritical about a medical system that doesn't often fail you, but that's perhaps a discussion I'll save for another post.
The curse of my existence is being constantly beaten with a shapeshifting rod, the nature of which is sometimes ableism, sometimes racism, sometimes misogyny, sometimes erasure, and very often, all of the above. Having brown skin and an unplaceable non-prestige English accent means that people who go in with the mindset that I can't possibly have autism come up with pretty awful explanations for some of the things I experience.
Like I said, people very often notice how much trouble I have with understanding sarcasm and jokes (I actually have a number of tricks to compensate for this with limited success - a post for another day!). Multiple times when I've brought up that I think it might be a sign of autism, I've been dismissed with statements like "It's probably just an L2 English speaker thing," (I'm not an L2 English speaker) or "You probably weren't exposed to as much wit and humour, culturally," which, frankly, is quite racist! And it's especially hurtful when it comes from people who know you much better than to make assumptions like that.
Because of these responses, I haven't felt as comfortable talking about other things I experience like days when any kind of languaging feels like wading through sludge, or days when I feel like speaking is difficult but texting would be fine. Many autistic people experience this regularly, but so many people are so quick to try and attribute my experience of these things to factors based on incorrect assumptions, that I don't know if I can talk about it and be taken at my word.
There's also a correlation between gender-nonconformance and autism that's interesting to think about in the context of my being agender. I've said plenty about my gender and my pronouns before, so I won't say more other than that all of these puzzle pieces sure seem to fit very well together in my understanding of myself.
You can probably tell that I could expound at length about my opinions on things like medical gatekeeping (in multiple contexts), medicalization, the harms of the deficit model of understanding autism, the problem with accommodations, etc. It's important to point out here that my opinions on these things have come from listening to many disabled people and engaging with disability justice activism. There's so much fantastic writing (both academic and not) that deals with these subjects and I'd do well to use my soapbox to share other people's perspecives too. So I'll try to make my next post about autism a collection of resources I've found useful.
I owe a lot to the folks creating these resources, telling their stories - the autistic people whose writing I saw myself in, those who have had conversations with me about shared experiences and self-diagnosis and official diagnosis and given me nouns for my verbs (like parallel play and dyspraxia and stimming and sensory overload).
I also want to thank all the disabled people who've played a role in radicalizing me against societal ableism and my internalized ableism. This is certainly an area of future work (on myself), probably forever, and could be something I write about too.
- Referring to me? Please feel free to say: Vasundhara is autistic / xe has autism / they are on the spectrum. Please do not say: Vasundhara has Asperger's / xe is high-functioning / "you don't look like you're autistic"
- Vaccines? Please get vaccinated
- A cure? No thank you. Most autistic people don't want a cure - we're actually quite happy being ourselves. I personally would love for allistic people to understand and accommodate some of my autistic needs better, though.
- Shock therapy? No thank you. There's a FDA ban on using it on autistic people in the US but there's a bill in Massachussetts currently to overturn that ban. Read more about #StopTheShock.
- Applied Behaviour Analysis? No thank you. I didn't experience it as a child and I don't have to as an adult with security and stability, but autistic people who've experienced it call it abuse and it's worth listening to them.
- American Birding Association? Hell yes
- Autism Speaks? No thank you. They aren't a community-led organization (they don't have a single autistic person on their board, for example), the autistic community hates them, they run awful campaigns that stigmatize autism and encourage eugenics, etc. Please direct your money to autistic people and to self-advocacy groups instead, if you'd like to donate.
- Simon Baron-Cohen? No thank you
- Sacha Baron-Cohen? Sure, but I'll be honest - I've never actually watched Borat
- Why didn't you eat chocolate cereal today? Great question! It's a samefood which essentially means it brings me a lot of comfort and is another form of structure that helps me feel safe. I think that not eating chocolate cereal today maybe means I'm feeling more settled in Germany, settled enough to loosen up some of my rigidity!
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