Did I mention that I went for my aspergers diagnosis in June? Yes, I know I did: just checking! What I haven’t mentioned is that it’s taken two months for my report to arrive, and what a bloody disappointment it was too!
It’s only now that I have really begun to fully process what happened, and how I feel about it. And probably the major realisation is that, as usual, I had expectations – high expectations which had little basis in anything vaguely resembling reality!
One of the many peculiarities I have discovered about being autistic is that I find that I never seem to be aware of what’s in my mind until a long time later, normally after an event. In this case what appears to have been lurking in my subconscious was the belief that the psychiatrist I went to see, because of his long-time specialised interest in autistic spectrum disorders, was going to be different to your average psychiatrist. He was going to understand me, and be some kind of font of all wisdom – a God-like figure of unimpeachable knowledge about all things autistic. A bit over-optimistic of me, do you think?!
The first evidence for me that he wasn’t and that he didn’t arrived in the form of my diagnosis report. And here comes expectation number two, which I wasn’t fully aware of having either – I was expecting something resembling a certificate! I’d even had the vague idea that I might frame it and hang it on the wall! It was meant to be short, concise, factual, and clinical: and he was meant to state categorically, as he had done at the end of my interview with him, that there was no doubt I have aspergers, along with ADHD.
Instead of which I got a three page report which contains glaring factual errors - I now, apparently, have an A Level in English Literature (I studied it but failed the exam); my niece, who is actually eight years old, is now eighteen; my best friend, who was there with me, was a residential social worker (no she wasn’t: the only residential work she did was when she managed a residential unit for people who were severely autistic); she also, apparently, acted as my AA sponsor when I first joined AA at age nineteen (I didn’t stop drinking until I was twenty-one, I knew her briefly for a year not long after that, but then she didn’t become my sponsor until nine years later); I developed an eating disorder when I was in my twenties (I’ve been addicted to sugar and a compulsive overeater probably since I was about six, and my bulimia developed in my early teens), and on and on it goes.
As if this isn’t bad enough I have apparently overcome and mastered my compulsive behavioural tendencies through the adoption of a very strict timetable, which includes a careful diet and doing yoga twice daily, but there are occasions when something unexpected happens and I panic, and then I look to my friend for support.
Hello? Who is this amazingly well-disciplined, carefully controlled, independent and almost anxiety-free individual to whom this report seems to be referring? Was I body-snatched, and someone else was sitting in that room with him? Was he actually bloody listening to a word I was saying? Yes, I do have a daily plan that I am supposed to follow and which, when I can manage to stick to it for longer than sixty seconds, does actually work to keep me calmer: but note the words “when I can manage”. I haven’t yet managed to go for longer than a week without some distraction or other, and it’s usually to do with one of those pesky “compulsive behavioural tendencies” which I have been so successful in overcoming – namely surfing the web and obsessively reading anything I come across! Hell, I’ve spent the last week doing just that!
Plus my friend, to whom I apparently only look for support in times of crisis, is the lucky recipient of at least one phone call nearly every day, on account of the fact that I need her guidance and interpretation skills most of the time, especially since I have nothing discernibly resembling common sense!
I’m seriously beginning to think that perhaps he was deaf. My friend believes that he is probably autistic, and unaware of it, on account of his total lack of social skills, inexpressive face, and the fact that the building he works in had the same colour scheme throughout! She says that autism is probably his special interest, that he’s learned to diagnose an autistic when he meets one, but that he’s just copying what he’s learned from the medical and psychiatric circles which he frequents. So nothing radical or new to be found there then!
No, for that I have to continue to look within myself, and to have the dialogues with my friend who has more understanding of autism, especially aspergers, than probably all the specialists and psychiatrists out there making a very good living at our expense (and I do mean that to be taken literally!) – and she’s happy to share what she knows for free. She has said to me all along that, if it weren’t for the fact that I need a “formal” diagnosis in order to make it possible for me to access services that I might require at some point, she would have said not to bother because, after all, we both know that I have it, so what does the opinion of someone who doesn’t even know me matter?
Plus, as she also says, it’s disgusting the amount of money he gets considering what he does for it – he sat for a couple of hours asking a few specially designed questions, while I basically did most of the talking because I was so anxious that I couldn’t stop! And, of course, I’m autistic, so the moment I’m given the opportunity to talk about myself I take it – what else am I going to do?!
And, in the end, what is it that we are actually paying for? The ‘privilege’ of being given a label by someone who’s been trained to identify us from the rest of humanity! How ludicrous is that? That’s like being told that I can’t call myself female until I’ve been formally identified and given permission to do so by someone who’s been trained to recognise a woman when they see one!
After all, as I am now beginning to understand and embrace, ‘being’ autistic is part of who I am, just like being female: it’s not something that I ‘have’, like an illness or an affliction. It’s not going to go away or get better (though, with my acceptance and understanding of it, I find that I get better at living with it). I’m even beginning to question the idea of it as a condition, because it makes it sound like it’s some kind of defect that I was born with, an accident of my birth, rather than a design of God that I should be created in a way that makes me experience the world totally differently to neurotypicals.
So, in the end, what has my trip to see this all-knowing, all-powerful God of autistic knowledge given me? Yet more proof that man (in the generic sense of the word) is fallible, and doesn’t have all the answers, and can’t even get the bloody facts right when they’re sitting in a room being told them! Oh, and a three-page report that I can’t, and wouldn’t want, to frame to hang on the wall, but which will go into a drawer somewhere, only to be used in dire emergencies ie when I’m required to provide proof that I am what I say I am!!
"Do you believe in Magic?" asked Colin.
"That I do, lad," she answered. "I never knowed it by that name, but what does th' name matter? I warrant they call it a different name i' France an' a different one i' Germany. Th' same thing as set th' seeds swellin' an' th' sun shinin' made thee well lad an' it's th' Good Thing. It isn't like us poor fools as think it matters if us is called out of our names. Th' Big Good Thing doesn't stop to worrit, bless thee. It goes on makin' worlds by th' million - worlds like us. Never thee stop believin' in th' Big Good Thing an' knowin' th' world's full of it - an call it what tha' likes. Eh! lad, lad - what's names to th' Joy Maker."
From 'The Secret Garden', by Frances Hodgson Burnett
"There is no way to happiness - happiness is the way."
The Dalai Lama
"If you don't stand for something you will fall for anything."