I feel like I’ve lost my voice recently, hence why I haven’t written all summer. It started when I finally plucked up the courage to phone the assessment centre and discovered it could well be another year before I got to talk to someone. There wasn’t any anger about this on my part, I know how stretched our NHS is and they were very apologetic. But I just started to feel really tired of this whole thing.
I always knew the wait would be long, but it gave me a chance to try and work out what I wanted to say anyway, to take a good hard look at myself and find evidence for my suspicions. As someone who isn’t very good at saying what I mean, or getting to the point, or speaking my truth, I needed the time to get clear on what I needed to say. After a whole lifetime burying uncomfortable feelings, pretending really hard to fit in and be normal, I didn’t know who I really was anymore. So the wait wasn’t a problem at first.
But two years doing that? Two years dwelling on what I can’t do, my shortcomings, my difficulties, all the things I didn’t want to admit to or face before… that’s not healthy.
At some point too, the original motivation, to understand myself properly, to ask someone with more knowledge than me; “So I’ve been reading about autism and the similarities with myself are uncanny, does that actually make me autistic or what?” Well along the way, looking for answers to those questions morphed into trying to prove to myself and the world that I am autistic, trying to seek acceptance into a community that seems so similar to myself. But I found myself worrying that I was trying too hard to fit the narrative, was it true or was it that I really wanted it to be true? Not out of malice or even attention seeking, but because I’m someone who never fitted in anywhere, was it desperation to have finally found my tribe? But what if I was a fraud?
I didn’t set out seeking medical diagnosis, I just wanted to talk to someone in the know to help me make sense of myself and understand where I fit in this world. But the only way to do that, with the authority that would allow me to believe it (because I don’t trust my own judgement, I really don’t), the only way is down the path of official assessment. But it’s become more like I’m revising to try and pass a test. And the subject is all the ways in which I’m wrong!
So I felt like turning my back on all of this.
Also a part of me was saying, “Stop being so self-absorbed! There are people in far worse predicaments than you, stop wasting NHS time… Snowflake!!” That is the voice of my upbringing, my “Barnsley sensibilities”: Pull your socks up and get on with things, don’t complain!
I know there are people far worse off than me, I’m fully aware of my privilege. But all I want is to understand who I am and how I work, and maybe meet some people similar to me.
So I stuck my head in the sand. Got a bit depressed. Tried to move on and pretty much just tried not to be autistic anymore. Meanwhile I couldn’t stop hating myself whenever I was around people, noticing more than ever how I stumble in conversations beyond pleasantries, wishing that talking to people didn’t feel like walking on a knifes edge and give me heart palpitations, and feelings of inadequacy. Wishing I could be, well, me, and wishing that was easier to do… Then there were feelings of being overwhelmed by noise and chaos, feeling like I was trying to juggle too many balls, worrying about losing my marbles because I’m so crap at organising things and forgetful, the face blindness, the brain fog… Feeling overwhelmed when I have to organise my thoughts into sentences to reply to messages. I couldn’t string a sentence together in writing either, there wasn’t the mental space for it… There’s been other stuff going on in my family too, but it wouldn’t be right to mention it here.
I’ll just keep on that waiting list I suppose.