Autism isn’t a mental health problem, but for me there’s a lot of overlap. Would my mental health have been better if I had known earlier that I was autistic? Absolutely. Being autistic does cause me some very real struggles in my day-to-day life, and there are mental health implications of those. But for me, looking back at my complicated and uncomfortable journey through various mental health problems, there’s no doubt in my mind that a huge part of those struggles was down to me living undiagnosed, not understanding myself or my brain, and trying so hard to force myself into a mould that was never made for me.
For me, struggles with poor mental health have been a common theme in my life from early adolescence. Getting my autism diagnosis didn’t fix all these things by any means, but it has given me a very different lens to view my past difficulties through. I think, I hope, it will also make it easier for me to better support myself going forwards and protect my mental health. I was first formally diagnosed with depression at 18, but those feelings had been there long before that time. The first time I can remember feeling that particular way would have been around age ten, but it was never something I spoke with a doctor about. At 19 I crashed out of university, completely unable to cope and wanting nothing more than to hide under my duvet and have the world disappear. I didn’t want to do anything, see anyone or think at all. I was mentally exhausted and I couldn’t see a future at all. I genuinely thought I’d feel that bleak emptiness forever. I was diagnosed with depression and formally signed off for a year of leave, a prescription for Fluoxetine and absolutely nothing else in terms of support.
And so it began. I took antidepressants for years. Between 18 and 30 I was on and off them, probably more on than off overall. Different types, with differing degrees of success, but never really feeling ‘better’, just better able to keep pushing through, which at the time I saw as success. Now I can see that it was that desperate need to push through, to have what appeared to everyone else as a ‘normal’ life, that kept me in that perpetual cycle. Because I thought I was a broken neurotypical, so I never even thought about how I could change my life and my world to enable me to be a brilliant and thriving autistic. So I pushed on. I finished my degree, via the Open University, had a string of progressively ‘better’ jobs which I was successful in, had a stable looking long-term relationship. But that feeling would reappear again and again, leading to bouts of barely being able to drag myself out of bed, of weekends completely catatonic, of losing friendships and closing myself more and more off from the world, just to try and keep afloat.
Anxiety, as I knew it, came later, and I have been told at various times that it’s either Generalised Anxiety disorder or Social Anxiety Disorder. I’ve had CBT on two different occasions, neither of which were helpful. It turns out that often CBT isn’t helpful for autistics, but obviously I didn’t know that I was autistic, and it tends to be the first thing offered in terms of those sorts of supports.
Looking back, the feeling I call ‘anxiety’ has been there on and off throughout my life, it’s just not something I’ve paid a huge amount of notice to. I don’t think now that anxiety is really the right term. I do feel ‘normally’ anxious sometimes, but I think there is another word for the feeling I get, I just haven’t figured it out yet. Maybe it’s overwhelm, or something closer to that. It’s somewhat similar, I think, to anxiety as other people experience it, but that doesn’t explain it fully. It is a primal sense of dread and fear, of being on constant high alert and overload, not able to settle or focus, feeling like my insides are too big for my skin. Even that doesn’t accurately describe it and I get so frustrated with myself that I can’t find the words for what I feel. Perhaps that’s the alexithymia, or maybe it’s because there isn’t an exact word that properly fits. No-one had ever even mentioned looking at the cause. My depression, anxiety, general issues with life, were all just treated individually, treating the symptoms rather than digging into the cause. I didn’t ask, but no one ever suggested. I was given antidepressants and the doctors I saw over the years never even mentioned the idea of counselling until over a decade in, which looking back seems like a massive miss. Surely talking to someone would have been better, or would have been good to try alongside medication but it never came up and I wasn’t in the headspace to ask for it So it never came up and I somehow never thought to look into what caused all of these feelings or if they were linked somehow. I was just a walking cloud of poor mental health symptoms and I assumed I was just broken and that was why I found the world so hard. Or maybe I just wasn’t trying hard enough. It hurts now, looking back, because I feel like I was let down. Surely it wouldn’t have been that hard for one of the many GPs I spoke with to try a bit harder to dig a little deeper. In the end it was all off my own back when I finally went looking for some real answers.
The period of lockdown was a painfully hard time for me. I’m sure it was awful in a lot of ways for most people but for me, I struggled to get my head around the sudden and massive change. That feeling of anxiety really set in then, and got worse and worse. There were other things too, lots of negative feelings, panic, fear, worry for the future and for my family and how the world was going to look going forwards. I struggled more and more to understand or connect with other people and I felt more and more alone and isolated from the world. You would think, perhaps, that for someone who finds social situations as hard as I do, having so much of that side of life removed would be a good thing, but I struggled more than ever. The normality of my routine was gone, my small encounters with people in structured environments that gave me the social contact I needed in a way that didn’t scare me was gone. I hid from a world that didn’t seem friendly or safe anymore and, this all coming when my son had just turned one, I worried about the fact that I had bought a child into it. I wanted to scream and never stop but instead I shut down, mostly. I screamed in private sometimes, and in public on occasion. Sometimes I felt like the world had gone mad, others I worried that I had. It was the start of something though, however bad it felt at the time, that I can just about see as a positive now. Because it was the start, for me, of me thinking that perhaps, after all, it wasn’t actually me that was the problem. All the time alone to process my feelings gave me space to consider that maybe I was just different and maybe the problem was that I didn’t fit in, but also that maybe I didn’t want to quite so much anymore. And having an enforced break from so many situations where I’d mask made me realise how draining it was and how little I wanted to go back to that. So, many months later, I received my autism diagnosis, and I’ve been slowly picking through my feelings and thoughts, trying to understand which bits of my mental health struggles were the autism and which were something else. I don’t have a clear answer, but I’m feeling better about it.
Was it ever really just depression? Or was it a cycle of overwhelm leading to complete mental exhaustion and autistic burnout, again and again, as I did everything I could to mask my way into a ‘normal’ life? Maybe those times, over the years, where I felt I couldn’t do anything, were actually examples of everything catching up with me. All my masking, the pushing through despite everything feeling so difficult, not acknowledging the sensory overload I constantly experienced, never really giving myself the time to recover because it felt lazy and unproductive. Was it every really just anxiety or is my extra sensitive nervous system so highly strung that sensory overload has me in a regular state of dysregulation? And I didn’t know about it so of course I wasn’t giving myself any allowances or building in any accommodations for myself.
Two things I do know: I can’t change the past, and I can change my environment to better support my mental health in the future. And, it’s very early days, but in general I think I make a much happier autistic person than the heavily masking wannabe-neurotypical I was before I found out. I really think finding out might have saved my life.