It’s the morning of my assessment for Asperger’s, and I’m close to cacking my pants (excuse the graphic honesty!). I’m so glad this day has finally come though because these last few weeks of waiting have become more and more fraught as time’s gone on. I’ve had so many restless nights recently and I am mainly being powered by adrenalin and tea. I can’t imagine having to wait the estimated 2 years currently expected through the NHS in our area! (I’m sure it’s just as bad elsewhere) and I feel sure I would bottle out given that much time to worry about it.
I only vaguely know what to expect of today: my psychologist has given me a rough itinerary over the phone – which I was sensible enough to write down, otherwise I would have completely forgotten. But I still don’t know what it will involve or how things will go. That uncertainty is really scary.
I’ve swung back and forth over the last few weeks from thinking there’s an extremely good chance I have the condition known as Asperger’s Syndrome (although no longer a formal clinical diagnosis), and thinking I’m just a bit different, awkward, socially inept. But each time I’ve swung back to the “Yes, of course I am on the spectrum” camp it’s been with renewed vigour. Asperger’s is all about the social hell I experience and the more I’ve read in the last few weeks, the more set in stone my own self-diagnosis is.
But I still want outside, professional confirmation, and I hope so much that it comes today.
For schizophrenia and bipolar disorder there is medication, for depression and general anxiety disorder there is counselling and/or therapy and/or medication and/or self-help guidance. But what is needed for autistic spectrum syndrome is acceptance and understanding. It’s not about a label for label’s sake, it’s also about ruling out the other things and that includes ruling out a neuro-typical brain. It’s an explanation. An answer.
I’ve not really prepared myself for disappointment today. I hope it doesn’t come.
We’re about halfway through and I’ve escaped for a wee. I was thrilled that the psychologist turned up in exactly the kind of car I was picturing she would have – and in the same lovely blue I had imagined. I’ve decided it’s a good omen. The first hour Richard was required to sit in and speak honestly about what a mess his wife is. I don’t think he enjoyed it too much but he seemed to be very helpful.
It’s all over and I’ve left the room while she summarizes all the tests and questions. I think I know how this is going to go now. She’s let a couple of things slip out, like nodding at the information about me playing schools as a child. She said it’s a classic thing that girls with Asperger’s do. I haven’t managed to eat yet today and feel very light-headed.
It’s all over. I’ve been given the confirmation I was looking for. I am indeed on the autistic spectrum. The psychologist is calling it Asperger’s one minute and high-functioning Autism the next. But the main thing is I have that official, professional corroboration I so wanted. She left at about 3pm and I took a few minutes to text and message a few people who I thought deserved to hear it first (apart from my sister in Australia, who I didn’t want to disturb in the middle of the night), and then Richard and I went for a walk on the beach with the dog.
Then I phoned my mum, and now I’m sitting here thinking about it all.
There’s a really important message in all this. I’ve read books by autistic people, books by autistic experts who themselves are not autistic. There’s a lot of talk about coping. I’ve had a good long think about whether I would want a diagnosis if I was confident and coping.
Well if I was confident and coping I wouldn’t have gone looking for a diagnosis. That’s the bottom line.
The psychologist said something similar. She said I have unusual habits, I have some big differences, but differences in themselves are not enough to call it a problem. It’s a problem when it’s a problem. And that’s the thing: it has been a problem. Well, not knowing has been a problem. Social stuff isn’t just difficult, it is like a living nightmare, things frighten me to the point of illhealth. I’ve spent my life trying so hard to be conventional, sociable, an ideal wife and mother, and it has worn me down so so badly. I am a human being but I am not the human being that other human beings are. I have some bits of my brain put together differently and that means I am not like other people. I’m not just different I’m Different.
We talked about what this knowledge would mean for the children, and agreed that knowing it was something genetic would help them to understand any problems they might encounter themselves. We agreed they may never necessarily need a diagnosis themselves but it might be some help and even some comfort to know that when seemingly normal everyday things get tricky or seem ridiculously difficult there may be an explanation to fall back on. It may just be a help to say ‘I’m doing okay considering what I’m coping with.’ There may never be a reason for any of my children to consider autism for themselves but I hope the fact that I was brave enough to go through today will mean something to them if they need it.
The psychologist looked at us after listening to us talk about our life and said ‘You’ve done jolly well to have coped with everything you have coped with.’ And it’s true. Especially now knowing why it was all so bloody hard for me. But at some point I realised I wasn’t coping and I was exhausted from trying.
The psychologist also asked me if I was relieved. I said I was. She totally understood my reasons for wanting an assessment and saw that some of my traits have been causing me distress because I didn’t understand them and was trying to hide them. I said I spend every day worrying how much my behaviour impacts negatively on other people and it will help me that other people know I am struggling against the odds.
I’d quite like those close to me to be proud of me when they think about just what I’ve put myself through over the years. And if they’re not proud I hope at least they can see how much happier this makes me and be happy for me too. Now, just knowing that I was made this way makes me feel okay about myself, and is going to help me rearrange my thinking. I’m going to be calmer and more accepting of myself. You’ll see.
Now I can think about what I want to try at, what’s worth trying at, and what I can happily ditch.
Thank you so much to the friend who introduced me to the idea that I might be on the autistic spectrum. It did always look like a country I wanted to go and visit.
And if another bloody person mentions boxes I’ll bloody deck them. Nobody puts Rachel in a box. I’ve never felt less boxy than I do today. I feel free. So nerr.