Saturday 7 October 2023 marks one year since my official autism diagnosis. Struggling with a full time job, trying to function as a parent and spending most evenings and weekends trying to distract myself from stressful thoughts has severely restricted the time available to process the news. Nevertheless, something has fundamentally changed about how I perceive myself.
When someone finds out in adulthood that they’re autistic, there’s often a grieving period as we reflect on all of the struggles we’ve been through. This would have led to a huge amount of reflection and melancholic sense of what might have been, if I’d had the headspace for it.
I realise that if I’d been diagnosed as a child in the 1980s my life would have turned out very different — and most likely for the worse. But there were so many chances for medical professionals to have considered autism in my adult life: the GP when I went to him in my early 20s with low mood and he suggested my symptoms sounded like manic depression (I’m not bi-polar but there was brief a period where I had manic episodes); the counsellor I saw in my mid-20s; a different GP and CBT therapist I had in my early 30s; another different GP and another therapist in my late 30s. But it wasn’t until we started considering our son might be autistic (he is) and started doing our own research into autism that we realised I am too.
Even a year on, at least once a week I’m reminded of a past event, or consider a character trait through a completely different lens and I want others to know and see me and my past that way too. Early childhood taught me to hide in plain sight: assimilate; don’t bring attention to myself. I’ve compartmentalised my past and have wished that I could erase all memories of me from the minds of anyone I’ve ever encountered (it’s highly unlikely any of them ever think about me: but better safe than sorry). Now, part of me would like to broadcast a message to them all to let them know that awkward, sensitive kid was autistic all along. He had no idea what he was trying to cope with and whatever outbursts or faux pas they witnessed was very much the tip of the iceberg: they will never understand the scale of what lay beneath the surface.
Like most of the autistic community, I fully accept those who self-diagnose as autistic. Personally, though, I needed the validation of an official diagnosis by a professional team (one of my most destructive traits is how much self-doubt I have) and having got that, the process of understanding myself better has been mostly positive. I no longer wonder why I seem to struggle so much more than my peers (and why people younger than me but not necessarily any more skilled or experienced are often my seniors). I am aware of the reasons I get headaches and feel overwhelmed easily. I have an insight into the conflict I feel between wanting to connect with other people and feeling like I should hide myself away. I understand that the previously unexplained episode where I had to take time off sick with stress (that, 2.5 years later, I still haven’t recovered from) was an autistic burnout (and probably not my first). And bigger than any of those, I now know the root cause of the anxiety and depression I’ve struggled with my entire life.
On the downside, I’m still conflicted between hiding away from the world and wanting to have friends. I’m still exhausted all the time and find it very hard to take care of my physical and emotional well-being (the two are, of course, inextricably linked). I’m still struggling at work. I know that the kind of work I’ve been doing for the last decade has been totally wrong for me and is detrimental to my health but I still have a mortgage and bills to pay. So in a sense, everything feels different but nothing has actually changed.
—
Autism can affect people in a wide variety of ways. For me, it severely impacts my executive functioning; my ability to manage my sensory environment; my anxiety and stress levels; and my communication — with neurotypical people, anyway. (I should add here that my assessment team felt I probably also have ADHD — many people have both conditions — although I don’t have an official diagnosis of that yet).
You might expect there to be some support available for autistic people but there isn’t, other than a few bits designed to keep us working. I’m still working full time: exactly as society — especially capitalist society — expects me to, but the kind of work I’ve been doing for the last decade doesn’t suit how my brain works. I’m worried that if any new challenges or stressors appear, I could have another burnout. Considering how the previous one affected me, I’m not sure how many burnouts I can get through before my ability to continue working is damaged beyond repair.
So, although I know myself far better and despite being able to see a way to stay part of the workforce, pay my taxes and keep political donors in profit by eating and paying my utility bills, I’m stuck. I can’t afford to start a new career from the bottom up again (like I did after the financial crash ended my first one): the starting salary wouldn’t be enough to cover our mortgage and bills. Even if I could afford to pay for my own training, I wouldn’t be able to work and study at the same time: I would just burn out again and end up off work.
—
This weekend, I’m going to enjoy some nice food and a couple of celebratory drinks with my wife: marking the occasion of my first (official) autistic birthday. On Monday, I’ll be back at my desk, trying to make myself do all of the things a neurotypical person might be able to do, in all of the ways neurotypical people seem to prefer them done. I’ll try not to upset anyone by speaking the truth. I’ll try not to lose my temper when something goes wrong. I’ll try not to self-medicate with alcohol (the best way I’ve found to dull the senses and enable me to partially relax). I’ll try to get some exercise. I’ll try not to have a panic attack when I’m away from my desk (getting exercise) and realise there’s something I haven’t done yet. I’ll try my best, again. Because it’s all on me: I’m the problem. The individual; not the system. Forget the long term ramifications and potential cost of my ruined carcass clogging up waiting lists and needing public money to look after it: I just need to pull myself together and continue to do what we’re all expected to do; whatever the conditions and whatever the personal cost.
