So that it – it’s happening: in April I will be having an autistic spectrum assessment. I don’t want to wait the estimated two years for a GP referral (that’s assuming my GP would even give me a referral), so I’ve booked a visit from a psychologist who will come and spend the day with me in a month’s time. It will cost me, but not anywhere near as much as one of the quotes I got from a clinical psychologist for about £4,000.
I don’t need help at work (I can’t hold down a job and that’s that as far as I’m concerned) and I don’t need benefits, I don’t need any special concessions from society but I do need some personal help, so for me an educational psychologist’s assessment is perfect. There is still always the chance she will disagree with me and say I don’t have Asperger’s but I do totally believe she will agree that I don’t have a typical brain and that some of my behaviours and problems fit onto the umbrella of autistic spectrum conditions somewhere.
I’ve already filled in some forms, which have held me trapped in a strange kind of self-analysis bubble for the last couple of weeks. Much of it has been quite useful and made me feel a lot better about myself although some of the searching for an honest version of myself is a bit distressing. I really do do things that autistic people do! I really do have extreme ways of reacting to things. A lot of things I’ve pretended are choices over the years are not choices but things that have been imposed or self-imposed because I have no choice but to escape the onslaught of unbearable stimuli in normal society. And, despite years of trying very very hard, I’m not normal in the way 99% of people define normal. Maybe things would have been different if I’d tackled all this years ago and help had been available… who knows… But there’s also humour too: plenty of funny things about myself that I knew about but didn’t know why. It turns out “nose of a dog” for instance – that Richard calls me because of my overwhelmingly strong sense of smell is an autistic trait. Screaming with frustration because ‘the effing dustpan and brush are not where I effing left them, and I hate it when people move things. I need to know things are where I left them!’ is also an autistic trait. My obsessions with symmetry and balance and straightening things are to do with the way I visually try to order things, and my regular crying at unfairness on the TV – even when ‘it’s just a film, Mum!’ is to do with my over-sensitivity.
A lot of the things I have got supermassivelyangry about over the years are because of being overwhelmed by the world I don’t fit. I don’t know if anyone else around me has noticed but I have noticed that I’ve been less angry recently. I am aware of what is happening and, to a large extent, why. I’m no better at coping with the world and my sensory overload but I am better at coping with myself. Today in the supermarket I knew why the other shoppers were making me feel stressed and I knew why I was walking past things I wanted to buy. I needed space. I needed a bit longer to think than other people. I feel crowded very easily.
In the evenings I still find the combination of family voices and TV sounds too much to bear but I can stand still and calmly say so instead of wondering why everything is deliberately being so awful to me. Knowledge brings an understanding that can give comfort and control and not only self-forgiveness but forgiveness of life and of other people. Other people can’t help being in a different world where colours aren’t so bright and noises aren’t so intense and I must forgive them that! Other people’s lives must be so boring. No wonder they sleep better than I do at night!
Now I’m armed with knowledge about some of my troubles they don’t seem so much like troubles anymore. It’s a bit like worrying that your lawn is blue when all the neighbours’ lawns are green. Well, hey, what do you know: mine was planted with blue seed – there’s no way it could have grown green – I was actually supposed to have a blue lawn! All that worrying for nothing…
But I don’t want other people worrying about my blue lawn or trying to help me make it green, and I don’t want the kids going on about how I should have a green lawn because ‘all the other kids do’ so it’s best they know about my blue seeds too.
Earlier this week, I tried to have a family chat about my forthcoming assessment. Even though I’d mentioned the likelihood that I have Asperger’s to our eldest daughter, and left books lying around and had conversations with my husband Richard when the kids were about, I wasn’t sure what they’d picked up on. And I wasn’t sure overhearing stuff was the best way to find out about things. It’s been difficult to know where or when to start and how much to tell them all.
Dinner was going at its usual crazy pace. The 19-year-old was eating like she was in a race, the 9-year-old was eating like she had a plate of rancid fish in front of her, the TV was on, conversation was disjointed.
‘I’m getting assessed for Asperger’s Syndrome soon. Someone’s coming to the house in a few weeks.’
The 9-year-old wanted to know if she could get assessed too. The 19-year-old finished eating and left the table. The conversation changed.
Oh well. I tried.
I’m in limbo right now. I’ve made my decision that I have Asperger’s but somehow I want that seal of approval from someone who’s been working with the autistic spectrum for years; someone who has a badge that says she knows her stuff and can give a definitive, informed, professional opinion. I think this option should be available to anyone that wants it and not just those of us who can scrape together the eight-hundred-ish pounds needed for an educational psychologist or the thousands of pounds needed for a clinical psychologist. I can only imagine what the two-year wait would do to someone stuck in a more difficult lifestyle than my own.
Richard said a couple of days ago that I should stop over-analysing it all: ‘nothing’s changed,’ he told me, ‘you’re still you.’ But I can’t help wondering what effect all this will have on the family and what it might be easier for me and us to do as a result and what I will have to accept I will always find difficult. There is of course some acceptance of – some reluctant resignation to the fact that I will never totally fulfil the role expected of me in today’s society and I will never be able to stop comparing myself with other women and wondering who I am letting down or holding back or disappointing in my family. It has totally consumed me.
Last night I dreamt of a rainbow umbrella. I was walking in the rain. I don’t like walking in the rain usually. I’ve always thought the elements have it in for me. But in last night’s dream I had a large strong umbrella. It was striped with all the colours of the rainbow and birdcage-shaped so that the spokes went down and over my shoulders instead of out and pointing at people. I felt safe and I felt dry. And best of all I knew I wasn’t bothering anyone.
Here’s a lovely little video by the National Autistic Society, called What is Autism?
And here’s what they say about diagnosis/assessment: Clarification is important because, whatever other condition may also be present, when a child or adult has an autistic spectrum disorder, this has a major effect in determining the needs of the person concerned. Providing the right kind of help and services is essential for the person’s future progress and quality of life. The right diagnosis and the right help also makes life much easier for the person’s family.