This is a post unlike the others that have come so far on this blog. It’s about living with autism, growing up queer, making improvements to make life easier, and building self-confidence in doing so. I’m nervous about posting it because it’s quite personal, but reading other people’s writing on the topics helped me figure out a lot of stuff in my life, so I hope this post might help others do the same.
There are heavy topics included – discussion of disability, queerness, and mental health. I can sense it’s going to be a long post, so maybe grab a beverage of your choosing before you sit down to read it. ☕️
I turned 30 last year and, as I think is common for age milestones, have felt quite introspective. I generally don’t mind getting older now – I feel like life gets better every year (even with the global political landscape of late, and everything that started in 2020), but I know that’s not a common sentiment. Thirty was special for me because as a younger person, it felt unattainable. I distinctly remember pondering life in a decade, in my GCSEs and at university, and there being nothing but a void - a kind of empty blackness my brain served me as a way of saying “there’s no way you’ll make it that far”. I’m thankful to be doing well mentally now, and thinking about my earlier years is a slightly surreal experience. Turning thirty, and a supportive employer, finally gave me the courage to seek a formal autism diagnosis, which I got late last year.
I had a very mixed childhood. I was blessed with a loving family for whom I continue to be grateful. But growing up, I’ve always known that I was “different”. Other kids would often tell me so as well. It’s only now that I can appreciate, with the benefit of hindsight, that there were so many levels of “different”, and that it’s OK to take your time figuring them out, one-by-one.
At first, I started to figure out that I wasn’t attracted to women, and then that I didn’t identify with the standard gender dichotomy. It was, apparently, obvious to other kids at the time – I was informed as much every day at school. In truth, I didn’t feel particularly attracted to anybody until what felt like years after everybody else, in my mid-teens. I suspect the other kids were just attributing my “otherness”, and difficulty in connecting with (or controlling me), with being gay. I remember thinking how odd it was that, to these straight teenagers, lesbians were extremely cool, but gay men deserved merciless ridicule and bullying. Teachers and other adults labelled me as “being a bit sensitive”, which still stings to this day, because it was used as an excuse to allow the bullying to continue. The hope being, I presume, that continued exposure would “toughen me up”. Needless to say it didn’t work, but I did figure out early on about the benefits of “masking” – an autistic survival strategy involving forcing a particular kind of behaviour or movement, scripting conversations, and disguising or minimising coping mechanisms. I didn’t realise there were costs, which I talk about later.
There are numerous experiences I can recall where other people were actively enjoying themselves, and I was sat there wondering how on earth anybody was having fun. Things like discos, clubs, and larger social gatherings, gave me what I now know is “sensory overload”. My brain has trouble filtering sounds out, particularly so in the case of speech. I really enjoy going out to cafés with my partner, but if it’s busy, it can be a bit of a nightmare – different people’s speech collides together in my head to form a sort of “fake English”. It has the right structure and sound, but the words are all muffled. It’s actually quite a lot like the popular “How English sounds to non-English speakers”1 video, except the volume of disparate conversations also ebbs and flows, to add another layer of confusion. I have to concentrate very hard on the person I’m trying to focus on, which most people can’t tell because I’ve gotten good at masking it, but amusingly my partner absolutely can, which I appreciate about him.
Another source of major sensory frustration involves touch. Touch is, for me, extremely personal, and causes an intense amount of discomfort when unwanted. My hands and feet are especially sensitive to basically everything – I have good circulation but if they’re too hot, too cold, covered incorrectly, or the floor has an unpleasant texture, it’s difficult to get anything done. I largely dislike how carpet feels and would be happy never living in a house with carpet again (and my home, appropriately, has none). I gained a reputation from friends in university for not being “a hugger”, though I very much like getting hugs from my partner (who understands my sensory issues and I trust 🤗), which would probably be quite surprising to them now. I would describe tickling as quite painful – not in a sharp way, but it’s like my nerves are on fire all the way up in to my brain. The sensations from unwanted touch linger for seconds after it stops, and often make that side of my body experience pins and needles, presumably from sensory overload. There’s not much you can do about sensory overload – it’s a physical difference in how you process input. I cope with it by imagining it as another internal “battery”, where sensory input depletes it faster than other people.
I grew up feeling distinctly like “an alien” in social gatherings. I don’t remember it being terrible in my earliest childhood, but as others developed socially, it rapidly became hard to stay connected to other people. Social life is absolutely full of nuance, facial expressions, body movements, and other non-verbal cues that I often don’t perceive or understand in the moment. This causes me not-infrequent problems – I can come away from a conversation thinking everything went absolutely fine, only to find out that I was being actively insulted (which happened at work once 🙀); or the other person thinks I was extremely guarded, when I thought I was just being polite. Masking is especially difficult in these contexts and requires a lot of mental effort. Frequent misunderstandings foment anxiety and make me over-think conversations, to try to make sure things go “well”. I made it a goal in 2021 to try to mask and filter less in conversations, and it’s been very positive for my mental health. I’ve also been asking people to be kind, but direct, with me – if they need something from me, or they want me to know that they care, I need to hear it with words.
I see masking as being a necessary part of life for autistic people, in a world that is not built for, or kind, to them. But now I recognise that it’s a tool to be used sparingly. The negative consequences of masking most of the time, like I did growing up, are anxiety, depression, and burnout23. There are loads more studies and sources – if you’re interested, I’d recommend you Google it. I suspect in an ideal world nobody should ever have to mask, but given a choice between masking and bullying, or masking and employment, I know which one I’d choose. That’s quite a black-and-white view, though, and I’m still finding the right balance. I burn out much quicker than other people, if the task I’m working on isn’t interesting, and I struggle to get through a day without a naps or down-time in a quiet room.
The internet has been incredibly positive for me. I was actually inspired to finally sit down and write this post after reading “The Internet Changed My Life”4. Without it, I would have struggled even more to make friends or connect with other people. Before university, I really enjoyed playing games online with other people, and spent hundreds of hours in an MMORPG called FFXI (Final Fantasy 11 Online). I found small communities on IRC that would help me form friendships that last to this day, a decade later. Google Video (eventually YouTube) fundamentally changed how accessible learning material was, and I continue to watch quite a lot of it for both entertainment and learning. It still blows my mind that I have a feed of videos to watch from people converting Humvees to electric5, building home automation systems using a Raspberry Pi6, or rebuilding an old ship7 🤯. Watching people do interesting projects gives me life and inspiration, and the quality and scale of these videos gets better every year – I’m deeply grateful for people making them.
I was too young to remember, but my parents have pictures and video of me being fascinated with an early DOS computer that they brought home for work. The first “program” I still remember writing as a child was a launcher, all written in batch files, for my favourite games. Because I spent a lot of the time “on the computer”, at home and in school, I was persuaded not to pursue Computer Science at university, despite that being what I now consider to be a “special interest”. I remember having conversations about what to do after school, with career advisors and such who had no idea about computers, and told I would have a boring, underpaid life as a programmer. I suspect they might have been connected to the military because they frequently suggested joining it. Those memories are quite amusing to me now because I enjoy what I do (I’m a Staff Software Engineer), and I’m well compensated for it. I’ve come to accept that my mental health suffers disproportionately if I’m not working on something that I’m interested in. Again – another “battery” that requires management. I’m grateful that my interests have happened to align with something you can make a career out of, and I frequently worry about it becoming untenable or losing my job for whatever reason and having to find another – the hiring process is extremely stressful for me.
A common trope about neurodiverse people is that they have some sort of “superpower”, which I’m sorry to report is not the case for me. However, there are things that I’m particularly good at, that lend themselves well to my career. The main one is getting a rapid understanding of complex systems as someone describes them to me. If it “clicks” in my head, I’ll probably be able to have a meaningful conversation about the system as it’s described. That particular trait also helps understand consequences in connected systems quickly - especially helpful when dealing with webs of microservices. I’m also quite good at recalling songs that I’ve heard, even if it’s only once, from a tiny snippet of it - but my brain forgets the title easily, making this ability useless in pub quizzes.
Getting a formal diagnosis brought me a significant amount of peace, and helps me better understand myself. It’s late, and took a lot of time and courage to do, but it was absolutely worth it. For what it’s worth, the people who said a formal diagnosis “doesn’t matter” were mostly not neurodiverse. I got my diagnosis privately because the waiting list on the NHS is currently around 18 months in my area, which seems to be a common story at the moment. I must admit I struggle with the thought that people should have noticed or helped sooner in my childhood, but you can’t change the past, and my life experiences so far have shaped who I am. There are times when life is hard, but even then, I’m happier than I’ve ever been and still optimistic about the future. I’ll end by saying that although these are my lived experiences, they obviously don’t represent all autistic people. Others will prefer different kinds of interaction, have different sensory experiences. Treat people like human beings and don’t make assumptions about their existence and you’ll be OK 👍
“Understanding the Reasons, Contexts and Costs of Camouflaging for Autistic Adults“ - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6483965/ ↩
“Experiences of Autism Acceptance and Mental Health in Autistic Adults“ - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5807490/ ↩
“The Internet Changed My Life” - https://pointersgonewild.com/2022/01/19/the-internet-changed-my-life/ ↩