I wasn’t going to soliloquise about my diagnosis and all of that.
I felt, perhaps unsurprisingly, that it would be of little interest to anyone else. We each have our own journey, after all – mine is no more fascinating than any other.
Something I read lately, though, has convinced me otherwise. It is, of course, important to speak. Communication is everything – an ill-fitting motto to adapt for someone with autism, but true nonetheless. And maybe, one day, something, somewhere, might genuinely help someone. I know I would never want anyone else to be in the position I have been in for most of my life.
So here goes. The bare bones, warts-and-all account of… Me, I guess.
Once upon a time…. Noooo, no no! I kid! I jest! Let’s start at the end and work backwards. (Who said autistics can’t do chaos!? Ha!)
My diagnosis came in August 2015. But saying “came” gives lie to the idea that it simply fell in my lap in the hackneyed, stomach-turning manner I keep reading about, where a kindly/concerned/observant (delete as appropriate) friend/teacher/parent/old lady in Sainsburys (delete as appropriate) noticed some oddity/quirk/flaw/atypical behaviour in my actions, raised the issue and supported me in acquiring an accurate diagnosis. No. Because I’m not a child any more.
I am not old – not even 30 – but even in my childhood, awareness and acceptance of autism, especially its variations along the spectrum, was next to nothing. So, sadly, my story begins like so many thousands of others: I slipped through the net. Pegged as shy, quiet, fiercely intelligent, unsociable, not trying hard enough and immeasurably awkward, I was easily ostracised, not just from my peers, but in life in general. The feeling of never fitting in, never being the same as everyone else… I wrote it off as part of the battle of accepting my sexuality. Various aspects are true of that too, so it was easy to do.
I conquered that, though, and into college at 19 I resolved to “make more of an effort”. To be the person I knew I was – the person I wanted to be, and knew I could be. It didn’t work. My grades were never good enough; my life was never good enough, and I was too easily distracted, and focussed, on my new boyfriend. I never quite developed the social circle I had hoped for either, feeling instead like my new-found candidness about my sexuality made me something of a novelty among the younger students. Titillation. (A good description, but also because I like the word.)
University followed – because that’s what normal people did, right? – and it was just the same. Homesickness and relationship troubles played their parts, but that feeling of something fundamentally just… Not being right, couldn’t be shifted. Do you remember, at school, there was always someone so extroverted it hurt you? The guy who always had a smart line; always had something to say; always the cheeky chappy, that even the teachers laughed at and bantered with? I told everyone I knew that that University experience felt like being in a class with 30 of those people. I felt cowed. Ignored. Invisible. Small, and weak, and exhausted. I could not compete, not materialistically, vocally or with personality. They were the antithesis to everything I was.
I moved home. Found a flat – living alone after swearing off ever sharing accommodation again – and enrolled on a new University course. In hindsight, I was still just going through the motions. Nothing changed. The same issues were still present in my academic life, and a new relationship added more pressure still. He was Finnish, and had his own issues. After nearly two years, life imploded. I battled depression and domestic violence, throughout a course of CBT which was less than useless, and everything stopped. I kicked him out, withdrew from my course, took sick leave from work and gave up the flat to once again move home – the night before which, my pet chinchilla died.
I was broken. And I felt I had long been broken, and nothing I tried seemed to ever change anything. I absolutely blamed myself. Depression consumed me, and there were many moments in which I believed it would be better if I were dead. It was your typical “no-hope-no-light-at-the-end-of-the-tunnel” sort of scenario. But instead I ploughed on. I think, again, because it’s just what you do. I don’t think my mind ever detached far enough to think suicide was genuinely a viable option, just that all logic and rationale pointed to it being the best and obvious solution in theory.
So I ploughed on, safer in the bosom of my parents, and accessed counselling with a psychologist. At around the same time I had made an online acquaintance who had Aspergers, and I would often try to pin down similarities in our personalities and behaviours. I had, by now, convinced myself that there had to be a reason for my failings – such is the autistic mind – and this seemed as reasonable a reason as any. On occasion he would suggest a likeness, but always stopped short of diagnosing me. Which is probably a good thing. The idea of Aspies taking things into their own hands and diagnosing people willy-nilly is a terrifiying idea – something for dystopian fiction, perhaps.
Anyhow, in this interim period – between the heart-wrenching collapse of life and the present day – I was also dating, infrequently. I have always disliked this. It feels like a game to be played, in which there are roles to assume, and the moment you do something incorrectly, that’s it: game over. It never sat well with me and, needless to say, like almost everything else on which I had embarked up to that point, I failed. My perceived bluntness (or rudeness, as it was more commonly called) alienated prospective partners and, on two separate occasions, the sentence, “god, it’s like you have Aspergers or something” was uttered/typed.
This did little for my confidence or dating skills, but it melded with every sliver of a hunch and nugget of knowledge I had mined over the last year or so. I felt, at last, that I had something to pursue; a possible answer. I mentioned it, as best I could, to my therapist. He actively dismissed the idea, saying briskly, “well I don’t think we’re looking at anything quite so serious as that”. I was crushed.
He was made redundant shortly after and I was pleased. It served him right for not listening to me, or taking me as seriously as I felt I ought to have been. Another year passed, and the problems grew stronger and more intense. It took that year to build up the confidence to once again approach my GP and this time, take the diagnosis idea to them directly. It went terribly. After I recounted what my Aspie acquaintance had said, and the response from two of my dates – along with a very detailed description of the other issues I faced and how long I had faced them for – his response was, “… and are any of these people doctors? No.” I was crushed. Of all people, I expected my GP to be neutral and supportive. I hurried to leave, but stopped in my tracks when he announced, peering at his computer, that my psychologist had referred me, eleven months earlier. I was aghast and insisted I’d known nothing about that, else I’d have gone. He offered to re-refer me and I bit his hand off.
If you’re still reading at this point… I dunno… Just… Bravo. I can only apologise: brevity is not my strong suit. Detail is.
The long, tense wait followed, in the dark about the very structure of the diagnostic process and absolute fear of the result. I tossed and turned and agonised and deconstructed it, time and time again, and never quite reached a conclusion. If they decided I wasn’t on the spectrum, that would surely mean… It was just me. Everything, all the difficulty, the struggle, the desperation, the failure: it was all on me. There was no reason, and thus, no answer. Hopeless.
But what of the alternative? What if they declared I was on the spectrum? What would that mean for my future? Could things be different because there was an explanation? Would a label be a help? Or a hindrance? I had no idea what I wanted them to say.
In the event, the process was incredible. Two ladies, a 1980’s pre-fab block with bad lighting and appalling decor, and conversation in which I felt understood, visible and validated in a way I truly had never before. Driving to the appointment I was terrified that I would agree to all manner of things, subconsciously trying to sway the outcome – which suggests I did know what I wanted the answer to be – but as the session flowed I was acutely aware that I wasn’t doing that at all.
A break followed, and the fifteen minutes in that bland, sombre waiting room were probably some the hardest of my life. The anticipation; the dread; the turmoil. Everything, dredged up and raked over, for examination and adjudication by professionals – by someone who knows.
They decided, though, that yes, I was on the autistic spectrum, and applied the tag of ASD. They spoke warmly and eloquently of their experience of me, and of how I must try to stop shouldering so much blame for the failings in my life, as it was achingly clear that they were largely out of my control.
What follows on from that pivotal moment… Well, that’s for other posts. So watch out for them. But the point of this one… Of this post? It’s to tell my story. To tell you how I did it my way.
It wasn’t easy. It wasn’t handed to me. I fought and pushed and met resistance at almost every turn, but because I was so stubborn in my belief, and so assured of my own feelings, I kept fighting and pushing. It worked out for me and I got the answer I had been looking for for nearly 20 years.
So don’t give up. You’re not alone; you’re not invisible. Someone will listen; someone will believe you. Someone, somewhere will help you. Don’t give up, believe in yourself and what you feel, ask questions and tell people until they have no choice but to listen. Make it happen for yourself, if you have to.
If all else fails, turn to the world and talk. It – we – will listen.