It’s Autism Awareness Day today, and in light of that I wanted to share a post I’ve been sitting on for a while about, well, autism awareness.
I’m not sure when I realised I was different from other children. I don’t really remember a time when I didn’t know, when I didn’t feel removed from others, like there was a foggy window between me and those around me and if only I could rub the condensation off the window I could interact with them normally. Try as I might, I never could.
As I grew older, it became more noticeable. I’d make jokes, and people told me I was being rude. I’d answer my sisters’ questions about the Lord of the Rings films with in-depth explanations.
Still, the idea that I was autistic never crossed my mind. What little I knew about the condition was images of boys – always boys – taking a deep interest in stamp collecting or model trains.
I began to dread social events, even as I craved connection with my peers. Parties, especially, were a minefield, once I aged out of the carefully scheduled series of Pass the Parcel and Musical Chairs and into the world of talking and interacting in a group, usually in a loud room with music blaring. I’d struggle to hear what people were saying over the background din, constantly feeling like they were deliberately shutting me out of a conversation – and, who knows, perhaps they were. Perhaps I was going on at length about something only I was interested in and missing all the signals that they wanted me to stop.
Still, I didn’t think I was autistic. I was no more like the autistic boys I’d met than I was my neurotypical peers. I was, I concluded, just a bit of a socially inept weirdo.
A year or two ago I stumbled across some tweets about autism in women and girls. Those tweets led me down a rabbit hole of information on how autism presents differently in women and non-binary folk, and I had this growing sense of realisation that this was it. This was me. From the more ‘socially acceptable’ special interests (I’m more into fantasy novels than model trains) to learning how to imitate others’ behaviours to mask my autistic tendencies, I saw myself.
Still, I did nothing. Even as I had this growing sense that autism answered all my questions, I didn’t do anything about it. What if I was wrong, and the psychiatrist said I was just selfish and unempathetic?
Then a year ago today, on Autism Awareness Day, I found myself reading tweets from one of my favourite authors about her own experience being diagnosed as autistic. So many of the things she said sounded just like me, and as I did more research I finally decided to bite the bullet and pursue testing.
The first place I contacted told me they only tested children and adolescents. The second place had a waiting list of over a year and weren’t taking any more patients. The third, though, could book me in in August, and I eagerly arranged an appointment.
Over the next four months, I began cataloguing my various characteristics, in a 5-page document with both second- and third-level headings (a friend suggested the first thing on the list should be ‘I wrote this list’). I was afraid of leaving anything out, so it ranged from social problems to sensory issues to ‘I read a random tweet from an autistic person saying they do this, and I do too, so maybe?’
When the day of my initial appointment dawned, I was tense and nervous. Still, I worried they’d tell me I was just weird. Of course, that didn’t happen (not least because it would be unprofessional!) and we arranged follow-up appointments for tests.
I did two series of tests. Often, I was told, they do a third, to test academic skills, but we left that one out as I have two Master’s degrees in different disciplines and work in a knowledge field (software development), so there were no concerns there. Instead, I just did the cognitive and social/emotional tests.
The cognitive tests were all right. I answered general knowledge questions, made patterns with blocks, did mental maths, and recited strings of numbers in the order (or reverse order) I’d heard them in. Some of them were harder than others, but for the most part I knew what was being asked of me.
The social and emotional tests were harder, which is perhaps expected with autistic people. I knew I was being tested on these skills, but I spent the whole time not understanding what, exactly, was being asked of me. There were things like ‘reading’ a picture book with no words and identifying what people were doing in an image. It was strange and confusing and I was relieved when it was over.
Then it was time for the interviews. We arranged two interviews: one with my husband and me, and the other with my parents (this was completely optional, but I’m close to my parents and they only live 20 minutes away so it seemed a good idea). During these interviews, my family members were asked questions about my behaviour, and we were all given questionnaires to fill out. I don’t know what the others’ questionnaires asked, but mine had questions about repetitive behaviours, social behaviours, as well as general diagnostic criteria for mood disorders.
I handed in the questionnaires, and returned a few weeks later for a feedback appointment.
Again, I was nervous, afraid they’d tell me I wasn’t autistic, that I was just weird. Again, I was wrong.
It’s hard to describe how it feels to be diagnosed with something like autism as an adult. There was an overwhelming sense of relief, for a start, but also a deep sense of validation. Here was a name to describe all the things I’d felt, all the things I’d struggled with without understanding the cause.
The psychiatrist explained in further detail what autism is, and what it means for me personally. There were so many ‘aha’ moments in that interview, so many things I’d thought were character flaws that I was somehow unable to overcome, when actually for neurotypical people they aren’t even a challenge because my brain simply works differently.
The biggest moment, though, was understanding how being autistic has contributed to my depression. Part of it I had already suspected – of course I’m more likely to struggle with self-esteem when I have trouble forming bonds with people and think no one likes me.
The other part, however, completely surprised me. Autistic people, seemingly, are inclined towards perfectionism, because the condition tends to encourage rigid thinking. In other words, part of my depression stems from the way that my autistic brain struggles to see anything as ‘good enough’ – it’s either flawed or it’s perfect. This applies to everything from my appearance to my karate to my creative work.
This was a game-changer for me. Realising that other people genuinely don’t see things this way was astounding. I knew I was a perfectionist, but I thought I just had high standards, not that my brain literally works differently from most people’s and because of that I have a much harder time accepting anything less than perfect.
I’m not going to pretend that I’m suddenly cured of my perfectionism, now that I’m aware of the root. That would be a bald-faced lie. But understanding the root of it is so helpful. It’s much easier to tell myself, ‘This is the way your brain works, and have you considered that in this context your autistic brain isn’t serving you as well?’ than it is to tell myself, ‘This is as good as it’s going to get, so you’ll just have to lower your standards.’
The more I learn about autism, the more I can’t imagine who I would be if I wasn’t autistic. It permeates so many aspects of my life, and not necessarily in a bad way. Of course, my autistic brain might try to convince me I’m never good enough, but that same autistic brain also gives me the ability to hyperfocus on my passions and utterly lose myself in research and learning. There are struggles, but learning that they’re due to being autistic gives me a greater ability to deal with them.
For instance, I am a chronically late person. My husband tells me we’re going to leave the house at least a quarter of an hour before we actually need to leave because he knows I’m going to be late. There are two reasons I tend to be late, neither of which has anything to do with me not caring about punctuality (in fact, I get very stressed when I realise I’m going to be late).
The first is that my brain tends to get very absorbed in what I’m doing, to the point where I’ll ignore anything else until I’m finished. I’m sitting here writing this right now, so hungry I’m beginning to feel light-headed and also in rather severe need of the loo, and yet I haven’t gone to deal with either of those things because I haven’t finished drafting this post.
The second is that I have, shall we say, a somewhat flexible relationship with details. I can just as easily get bogged down in the minutiae of what I need to do to leave the house (get a pair of socks, put socks on, put boots on, etc.) as I can simply forget about those details entirely, so that if we plan to leave the house at 17:00 I will be finishing the chapter I’m reading at 17:00, forgetting that I need to change my trousers, brush my hair, get my handbag, and put my coat and boots on.
For years I thought I was lazy. Why couldn’t I just leave the house on time like normal people? I’d berate and browbeat myself to try and make myself less lazy, but it never worked. Of course it didn’t work, because laziness wasn’t the root issue.
Now that I understand that these things stem from being autistic, I’m getting better at dealing with them. I no longer read books or work on creative projects before work, because I know that if I do I’ll get absorbed in something that does not fall under the umbrella of ‘getting ready for work’ and I’ll end up rushing out the door and sprinting after my bus.
Likewise, if preparing to leave the house requires anything more than simply getting up and going out the door, I’ll do as much as possible well before I actually need to leave. If I’m meeting friends for brunch and have to shower first, for instance, I will do it right after breakfast and then get dressed and pack my handbag, before I have a chance to get absorbed in something else and find myself rushing around like a headless chicken, hair dripping into my purse as I try to find my keys.
I could go on about how learning I’m autistic has helped me understand myself as a writer, or how I’ve learnt it affects my ‘adulting’ skills, but for now I’ll just leave you with this:
Being diagnosed has taught my that I’m not broken. I’m not lazy, self-absorbed, or incompetent. I’m autistic, with all the many wonderful and challenging facets that condition brings. And there is absolutely nothing wrong with that.