Two years too long

I try not to let things get to me. I have a tendency towards strong emotional responses when faced with unfairness, injustice or blatant prejudice, regardless of whether it’s directed at me or others. I try to put that in a box. Unless I can take action to change the situation, I do my best to ignore realities that hurt me to feel. But still, every so often, something will set me on fire.

I saw this, from the NAS:

And it made me SCARY mad.

I’ll never forget the night I realised I was autistic. I was walking home from a concert I’d cried all the way through, with the friend that had kept quiet all that time. We walked three miles in the middle of the night because I said I couldn’t face the bus. I dropped a line about probably being “a little bit autistic”. And he said, “yeah”.

I got home and looked it up on the internet. Luckily I found the National Autistic Society, rather than anything more sinister. But still, it was about 2 weeks before I could really stop crying.

The concert was on a Friday. I spent half the night reading up on autism – seeing myself everywhere, my face reflected in the little things. I read about how to go about getting a diagnosis: what to tell the doctor and how to prepare. I made notes, volumes of notes, about how I fit the criteria. I wrote constantly. I cried, on and off. I slept in between.

There were people who scraped me up off the floor during that time. They could be on the phone, made sure that I ate. They came over when I needed them. Although I hadn’t even known myself before – I didn’t know how to be a friend – they were there for me. They were friends, good friends, even though I wasn’t. I didn’t deserve them, and I was so, so lucky I had them. They probably saved my life. But that’s not what this story is about.

I went to my GP the following Monday. I sat in the waiting room for an hour, holding everything in. Before I knew it didn’t matter if I rocked, it couldn’t hurt anyone, I held myself rigid. I clutched the printout I’d made: a bullet-pointed list under each criterion. I took it in with me, and burst into tears.

My GP was great. She took the printout to read. She didn’t let it faze her that I cried, that I was strangely calm and coherent while I cried. She took me seriously, and told me she didn’t know what the procedure was, but could she phone me. Then she phoned me that night after work, and said there was a form for referral. Since I knew myself best, would I like to fill it in and send it back to her? A couple of weeks later I got the letter from the NHS saying the waiting list was long, but I was on it. And things went quiet.

It was well over a year before I heard from them again. The diagnostic service was amazing. They treated me with compete dignity and lack of fuss, accommodated my anxieties as a matter of course, and gave me all the right information to feel comfortable. They knew what I needed without me even having to ask! But by the time I had an NHS diagnosis, bringing with it precious access to the local autism support group, it had been almost 18 months.

Two years is too long.

In the meantime, I’d been lucky. Incredibly, impossibly lucky. I was able to get funding for a private diagnosis. Within six months of everything falling apart, I had official recognition. I had documents that entitled me to support at work. I had access to some limited expertise. No longer stranded, with this glimmer of a safety net, I could begin to build from scratch for myself an identity that was real. Yet for those six months, I had nothing. I was nothing.

I kept my job. I kept my house and my car. My family supported me. The people around me, although they never knew it, kept me from suicide. I was given time and space to recover. I built a shell, a hollow of myself – and it somehow held. For six months. I would not have survived for two years.

Two years is too long.

My GP did everything right – more than right. She listened to me, read what I’d written, realised I knew what I was talking about, and made it easy for me. Not everyone has it that easy.

I have friends, now, seeking diagnoses. People I care about, stranded and struggling. You can’t hope to get a referral unless you’re struggling. One’s GP flat out says she can’t make a referral. Another can’t even get a face-to-face appointment with the GP: only a phone consultation. I couldn’t have had that conversation over the phone – how can they? Of course: they can’t. I walked into my GP surgery and had a referral within two weeks. They’ve been fighting these barriers for months. And that’s before the clock even starts.

Two years is too long.

This isn’t a political campaign from the NAS, in the sense that they’re supporting any one particular party, but it’s the first campaign that’s ever really hit me. If you’re in the UK: register to vote; then do. I’ll vote. It’s small. It’s all we can do.