I don’t believe that any of my mental health problems have been as a result of me being autistic.
Many (Most? All?) autistic people have mental health issues, but being autistic is not a mental health problem in and of itself. Autism is a neurotype, not an illness. It doesn’t cause mental illness either.
What causes mental illness in autistic people is having to contort ourselves to fit into a neurotypical world. To have to constantly mask so we can ‘pass’ as neurotypical. To have to constantly pretend to be someone else so we can have work and friends and relationships and an outwardly ‘normal’ life. To have to struggle to work full time, when our sensory needs and constantly whirring brains mean that we really don’t have the mental energy to do that day after day, year after year. But at the same time, those of us who are perceived to be so-called ‘high-functioning’ are not afforded any kind of support.
Autism is a neurotype, not an illness. It doesn’t cause mental illness either.
I’ve had mental health issues probably all my life, but certainly since I hit puberty. As a young teen I remember experiencing dissociation for the first time (though I didn’t know it had a name back then) and writing in my diary: “I feel like the things that are happening to me aren’t really happening… or that it’s not me doing them. Nothing feels real.’
I started suffering with anxiety so bad it kept me awake at night with a physical sensation in my stomach. My mother took me to the doctor, who diagnosed ‘growing pains’ and sent me home with no suggestions or advice. Whatever it was I was experiencing, I knew it wasn’t growing pains.
Later on, I suffered through two bouts of debilitating depression, one during my first year of uni when I was just 18. I had no support at uni – no one knew I was autistic then, including me – and no one seemed to notice as I gradually stopped attending classes, stopped taking care of myself, withdrew from my few friends and started spending my time either drinking or sleeping. I didn’t have anyone I could talk to about what was happening to me, and had no idea this was depression. I still can’t believe that none of my tutors, or anyone in authority at my uni, noticed my failure to turn up or hand in assignments – or, if they did, didn’t think to ask me about it.
I ended up failing the year and being kicked out.
I managed to somehow get myself back onto an even keel over the summer, and I applied to the uni in my hometown. By some miracle, I got in and was able to start over. I still didn’t know that what had happened to me was depression; I never had any treatment or support, but gradually my mental health improved, though I don’t think I ever fully recovered.
The second time depression hit was four years into my first teaching post, when I was in my late 20s. I think it was the pressures of teaching and the constant daily masking of my true self, combined with finding it impossible to relate to people in the small town I lived in, that caused my mental health to deteriorate. I gradually retreated into myself over a period of months, until I was spending all my evenings watching Buffy the Vampire Slayer DVDs alone in my house, while my marking sat in a pile on the table.
After Christmas at my parents’ I returned home and dumped the unmarked exercise books in the bin, rather than face marking them. I taught (well, turned up and stood in front of my classes) for the first week of January; on the Friday I remember coming home from work and suddenly thinking, out of nowhere, ‘Imagine if that was the last lesson I ever taught.’ It wasn’t, but I never returned to that particular classroom. Instead I took myself to the doctor and cried for twenty minutes, until he signed me off with depression.
At last I now had a word for what I was experiencing, though still no real support was forthcoming.
I ended up taking a break from teaching for a year, then going back when I realised I couldn’t make ends meet without my teacher’s salary. I did some long term supply at first, then got offered a permanent post I ended up staying in that school for five years.
I think that on some level I knew this wasn’t depression, that this was something else, and my gut instinct was screaming that trying to mask it with pills wasn’t going to solve the problem.
Then depression seeped into my life for the third time. This was six years ago, when I was in my late 30s. At least, it was diagnosed as depression at the time; now I suspect that it was actually autistic burnout. But I still wasn’t diagnosed autistic then, and I had been previously diagnosed with depression, so that was the label put on it. I was repeatedly prescribed antidepressants, which I refused to take. I know that antidepressants save lives, and are massively helpful to many people, and I have nothing against their use – though I do think doctors need to stop overprescribing them, and start seeing them as a last resort, rather than the first solution to turn to. But I think that on some level I knew this wasn’t depression, that this was something else, and my gut instinct was screaming that trying to mask it with pills wasn’t going to solve the problem.
I spent five months sitting on the sofa, watching Judge Judy and taking photos of my cat, before quitting teaching for good.
Privately funded counselling saved me. The waiting list on the NHS was so long I’d have been going back to work for my ‘phased return’ before I had my first session. Plus, all they were offering was CBT, and I didn’t need coping strategies. I needed to know, on a deep level, what was going on with me – what was actually wrong, what the root cause was, and how to piece myself back together.
In counselling I was finally able to say out loud something I’d suspected for over 10 years: ‘I think maybe I am autistic’. My counsellor was doubtful, but supportive, and we explored this together. By the summer I’d gone to my GP and asked for a referral; I was diagnosed the following year.
In counselling I was finally able to say out loud something I’d suspected for over 10 years: ‘I think maybe I am autistic’.
I get very angry when I think back over all this. Angry that I wasn’t picked up sooner. So angry on behalf of that bewildered girl who flew under the radar for so many years, the girl who was so good and quiet at school that she presented no apparent problem that needed to be solved. The woman who struggled alone through life, finding things that seemed normal and easy for others such a challenge, not realising there was an explanation for everything that was happening to her. I simply didn’t have the knowledge, the tools or the support to know what was happening to me or to seek help. And even when I did, that help wasn’t forthcoming – it was only by sheer luck of circumstance that I was able to get that private counselling and save my life.
Since my diagnosis I’ve been able to be myself more, do what feels right to me, treat myself with more kindness and stop comparing myself to neurotypical people. My mental health is still a daily consideration, but it has improved immeasurably since I’ve given myself permission to arrange my life around my needs as an autistic person.
I am incredibly lucky.
I’m lucky that I eventually figured out that there was nothing ‘wrong’ with me – I just have a different neurotype.
I’m lucky that I was able to access diagnosis, for free, on the NHS.
I’m lucky that I was able to access good quality counselling privately (because my wife had private health insurance through her work).
I’m lucky that I have the aptitude, skills and circumstances to be able to start a business and create a life around my needs.
I know there are many who are not as lucky as me.
We need to find a way to work together so that girls like us are not missed as kids – that they are spotted and diagnosed and supported. We need to find a way to make it so that any adult diagnosed autistic is able to access the support they need, whether that’s one-to-one, open ended talking therapy, or financial support if they’re not able to work due to burnout or because they simply can’t cope with working full time.
I don’t know yet how we’re going to achieve this – but how amazing would it be if every autistic adult was supported to live her best life, as the autistic person she is, without having to hide any part of herself to do it?