Posted by Jesper on April 22, 2023
I don’t expect this will be a surprise to people who know me, but at the same time I have never told most people. So I’m making it official now: I am Autistic (if you wonder about the capitalization of Autistic: please go read this post). I was officially diagnosed when I was around 18 years old, though even then it was not really a big surprise to me. Still, somehow I never felt like telling people about it. Recently I finished reading the book Unmasking Autism by Devon Price, which made me update my opinions on many of the concerns I used to have and made me comfortable with calling myself Autistic in public.
So why did I never tell anyone, even when I suspected they suspected? There are many reasons, which I guess are relatively common: I didn’t want to “put a label on myself”, I didn’t want to be treated differently, I didn’t want to burden the people around me, I didn’t feel like I was “autistic enough” , I was afraid to be mocked or bullied, … But the most important reason was that I didn’t want to view myself as disabled or less worthy than other people. Slowly over the years, I’ve come to the realization that this view is problematic, and it is actually okay to be Autistic (or otherwise disabled, or just different from others). Price’s book helped to dispel the left-over traces of that view in me.
As I mentioned, one of the reasons I used to have for not accepting myself as Autistic is that I didn’t feel “autistic enough” (whatever that means). However, while reading Price’s book I could recognize myself in a surprising number of feelings and behaviours. The book even mentions that thinking “oh, is that an Autistic thing too?” is itself a common Autistic experience! I used to think that being able to successfully hide some parts of my Autism (i.e. masking) meant that I was not disabled or suffering from it, but obviously being continuously exhausted from masking is itself a form of suffering.
My experience with having a wrong perception of Autism - despite being diagnosed as Autistic myself! - suggests that many people still do not have a good idea of the different ways in which people experience being Autistic. So to help other people to expand their concept of what it is like, here is a list of ten things that being Autistic means to me:
I can get completely absorbed by one of my “special interests”. My most enduring interest (apart from dependent type systems) is probably tabletop role-playing games and story games, which I like to play, collect, and analyze the rules of (according to my list, I have purchased physical books of 34 different RPGs, and digital versions of 55 more). Every now and then a new special interest comes up and causes me to spend anywhere from a few hours to a few months being completely absorbed in them.
I am constantly worrying about what is or isn’t “appropriate” in any given social context, and try to adapt to unspoken assumptions. This drains energy and often leaves me feeling exhausted.
I’ve been fidgeting with things for all my life. I’ve been bullied for it in school, reprimanded for it by my parents, and tried to suppress it when I’m afraid people will judge me for it.
I can’t count the number of times I’ve been called “sensitive”, “absent-minded”, “oblivious”, or “naive”, from when I was in primary school to today.
I often have difficulty prioritizing, making decisions, or getting a feeling of what I want to do. This leads to endless overthinking and often stops me from taking action at all.
I often find it hard to maintain a two-sided conversation, especially with people I don’t know well and/or don’t share many interests with.
I am endlessly curious and able to absorb large amounts of information and organize it in a more structured way.
In situations where I feel confident, I can be direct and even blunt in saying things that other people were being afraid to say or were having difficulty articulating.
I am often hesitant in a conversation to take initiative by asking questions or talking about things that interest me, instead biding my time and trying to mirror how other people are acting.
I keep most people in my life at a safe distance and avoid to talk about my personal feelings, out of fear people might find me too weird and distance themselves from me.
For many of these points, I have already been in the process of unmasking for a while now, so they may be less obvious to people who I’ve only got to know in recent years. This process of unmasking has been a very positive experience for me, and hence I want to encourage other people who (suspect they) are Autistic to try the same! I recommend you go read the book (here is a link to the local bookstore in The Hague where I bought it), and, if you feel comfortable, feel free to share your stories with me on Mastodon (@firstname.lastname@example.org or @email@example.com) or send me a private message.