I'm not sure how to start this week. Last week's episode of "What the F happened to me between 2009 and 2014 (or, to be fair, 2017)" was a rough cut. I wanted to write the only thing I really know about the first six months of 2010, and that's it. Flashbacks I didn't know were flashbacks.
This week is all about digging myself out of the hole.
There. That's how I'm starting.
This is a story about how bad mental health access and support was and, well, probably still is. It's also part of a longer story where I, as a newly diagnosed autistic human, have to use this new lens to examine every bit of my past, re-integrate it into my identity, or...
create a whole new identity maybe?
This is also a story about how hard it is to have any kind of identity when you're autistic and you are fundamentally wired differently to almost everybody else around you. And it's about the worst part of being autistic, which is the bit with the meltdowns.
Finally, this is also also a story about me struggling with my creativity, being a writer, and surviving life in the weird afterlife of a dream.
Where do I start with this?
This is how I've survived my whole life as an (undiagnosed) autistic person: I don't get what's going on around me. I'm flailing, drowning, confused, and nobody can quite get why I don't get it. By which I mean life, of course. I'm staggering through the world under the weight of a degree and a PhD, so how come I can't cope with the rest of reality?
That was the question scratched into the faces of the people I had to see at the Job Centre, at the doctor's offices, anywhere I had to go.
School was horrible for me but at least the rules were clearer, the track I had to follow (primary, high school, GCSEs, A-Levels, University). I also didn't have to think too hard about food, shelter, bills, taxes, and all the other things that show up in adulthood and you suddenly had to manage.
I spent a long time identifying different types of people and imitating them, if I had to be around them. I was very good at knowing enough about a lot of different things so I could ask pertinent questions and always, always agree as much as I could. People like it when you agree with them.
In my later teens, I was a goth. When I dramatically decided to quit university life and go be a writer, I thought I would shed all the gothiness instantly. I'd be an Adult Office Worker With An Ambition. The last four or five blogs have been all about how well that didn't turn out.
This is all me interpreting from late 2023, of course, being autistic. At the time, I was just trying to survive.
I adopted the same kind of strategy for surviving the world of claiming and living on benefits, plus my own "please people as much as possible" schtick.
So, obviously, I got obsessed with the idea of being A Good Little Patient.
This did not go well. I grasped the sense of my doctor being exasperated with me. He was supposed to be good at mental health issues, but he only seemed frustrated with me. As though I was lying, making it up. He did refer me to the psychological services, though, and I was put on a one-year waiting list for treatment.
I started seeing a psychotherapist once a week in early 2011. I was given the NHS standard: sixteen weeks of "whatever therapy is available in your local trust". My psychotherapist frequently cancelled and seemed unwell in herself. I worked as hard as I could, applying the rules of school life (work hard, get good grades) to mental health recovery.
At the end of the sixteen weeks, I had a meltdown. I wasn't ready to be out there in the world on my own. I still couldn't function, I still couldn't get out of bed most of the time. Nothing we'd done actually helped. I was scared and frustrated and couldn't understand what was happening to me.
This resulted, sometime in 2012 (I think—at this point dates and times escape me), in me having a series of meltdowns in a series of offices.
The last one was the one that broke me.
I went back to my GP and asked for more help. "You've used up what you're allowed to have on the NHS," he told me. I burst into tears. It's hard, looking back, to get a handle on what was going through my head except that it felt like I was in the middle of a storm. Not a hurricane, because hurricanes have calm centres and there was no calm centre here.
My GP (the mental health specialist) told me I had to grow up and get over it. This didn't help, so he sent me to two different frontline services. One was so hideously generic the person I saw outright said I needed more intensive help and to go to the other service to get it.
So I did.
A bus ride away.
The service was adult psychology, set in a single-storey office block of the sort of red brick government buildings went for after they realised how much Brutalism is like being punched in the eyeballs by the colour grey. A huge waiting room and nobody in it but me, on a plastic chair, waiting.
The receptionist sat behind a long desk at the far end of this grand, chair-filled space, behind a glass wall. How long did I wait? I don't remember. I don't even remember walking to the office, but I have an image in my head of it being at a corner point in a long, anonymous corridor lined with greenish doors.
The psychologist was brusque. I recall people largely as indistinct shapes, and she was another indistinct shape among many. The office was tiny, with an equally tiny window looking out onto an institutional area of nothing. A desk on one side and a filing cabinet in the other.
They'd arranged the desk in the way these places always do. You sit to one side, in this case cramped between desk and door, without the fake-wood barrier between you.
I remember fragments of conversation. I tried to explain that I was sick. I didn't have the right words but I explained about the flashbacks. Or I must've done. I explained a difficult childhood.
"What was it like for your brother?" she demanded to know. I told her he was fine—kids, family, etc.—"Well. It can't have been that bad if he's okay."
I tried to explain that I was stressed out and terrified by being on benefits, but that I didn't know how to get back into work because the idea of being in an office—lights, noise, people—was too much.
"Right, let's get you a job then," she said. "What do you like to do?"
"I like writing," I said.
"Well, you can't do that. Nobody makes a living doing that. You have to go back to what you were doing before."
That's when I had the meltdown. I screamed. I never left my chair, but I burst into tears and threw my phone on the floor. Thoughts were too fragmented already, and I couldn't do it any more. I was so mad and so frustrated.
I don't know what happened next.
I only remember that I was escorted back to the waiting room in short order. She told the receptionist to watch me. She announced to anyone within earshot that if I didn't behave myself, she would call the police.
It was a repeat, I think, of what she'd said when I first exploded.
For the last month, ever since I started doing the Sense Writing course, I've found myself back in that office, or the waiting room outside, repeatedly. It stands out even more than the eviction hearing as that moment when I became so terrified that if I dared do any writing they'd call the police on me.
I didn't know who they was. Just that I felt watched, all the time, and this has left me too afraid to even imagine Amnar, the world I created, with any level of consistency or joy. I'd had the one thing I had found that helped, that gave me a space to be in the world, taken away.
I was so deeply, deeply ashamed. I was a grown-up, so everyone kept telling me, I should be able to cope!
I've weirdly been told this since I was eleven, in junior school, having period pain. "Well, you're a grown woman now, deal with it!" said the teacher. This was 1989, though, and teaching was terrible back then.
In 2012, though, I wasn't coping and I didn't know why. My simplistic approach of "Find somebody else to pretend to be and then Be Them" wasn't and honestly hadn't worked very well all the time I had jobs, and now for some reason I couldn't function enough to get out of bed, let alone pretend to be anything.
The meltdowns are the worst bit about being autistic. The bit that I think about from the Louis Theroux documentaries. They're the most obvious bits where people don't understand why I, a grown up human with now two PhDs, can suddenly behave like an angry toddler in a supermarket who's been denied a chocolate bar.
I don't either. I am afraid of meltdowns. I decorate myself in "I'm autistic" signs as a way to mitigate, just in case it happens again. I'm still ashamed when I snap in front of my partner. I'm scared of them, scared of the emotions, and yet also scared to be me.
So scared, in fact, that I officially changed my name. Everything that happened for nearly twenty years of my life turned out to be because I was trying to live a series of different lives, or lies, or some combination of the two. The effort of trying to follow what's going on and understand is so overwhelming that I still spend most of my life in bed.
I got out of the office, the building, in physical terms, but I still pay emotional rent to that space, still freak out at the idea of doing what is and always has been, my true special interest.
As usual, I have no real ending to this post. Except that, over the last month, some of the burden of carrying the memories and the emotional pain of those years on benefits has begun to fall away. There's something about writing out a story of yourself for others to read that releases it.
I'm ashamed at what happened but I'm also angry. It's taken writing all this out again to recognise the emotion. I never felt, at the time, like I had the right to be angry. I was the one who was fucking up, I was the one who wasn't trying hard enough, "meditating hard enough", as one doctor put it.
In 2013, I went back to my regular GP after speaking to a friend about possibly being autistic. I looked up one of those online tests. Oh boy did I come out with a high score. I asked the GP for a referral.
"You don't need another diagnosis," he said.
It took nine years to come back to that one possibility and he's wrong. I did need that diagnosis. I needed it to explain all the other constellation of diagnoses and why they didn't explain what happened to me, what kept happening to me.
I was diagnosed back in 2022, so it'll be two years next March. I'm nowhere near fully integrating that one word, autistic, into my sense of self. I strip back the layers and keep working. It's hard not to keep masking, but all of that deserves separate posts.
One last note: After I stopped isolating myself so profoundly in 2010, I did start to interact with other people again. They didn't see what went on when I was alone, but I did find a lot of support out there and made a number of friends. For all the people who were around at the time and supported me in any way, I'm incredibly grateful.
I remain indebted to my parents, too. They were eventually able to support me to get into a more secure situation rent-wise, and then to help me when I finally figured out a way off benefits. They also stepped up when I broke my ankle in 2016 and then again when I finally, finally, got referred for an actual autism diagnosis.
I'm still struggling to write—well, fiction, my one true love. I haven't managed to do what I planned to do when I set out on this "Do something writerly in 52 weeks", but I don't think I was ready.
In the meantime, this is probably the last post I'm going to write in this weird series I've been doing digging into that specific bit of my past, at least for now. We've got three posts left after this one before the year ends and I have no idea what to do next year except keep on keeping on.