After my last post on Wednesday, I thought (some of?) my readers would be interested to know the results of my trip to the ASC Diagnostic Team on Thursday afternoon.
It’s officially official, two psychiatrists and a psychologist have looked at my scores in the AQ (10) and RAADS-R (201) screening tests, my behaviour in the interviews and all the information we wrote down and sent them, and have come to the conclusion that I fit the ICD-10 criteria for Asperger’s Syndrome. Very definitely. It does explain why I’m better at writing than verbal communication. And had no friends until Fiona decided to keep talking to me until I gave in, when I was 12.
I am relieved and feel vindicated. It makes a lot of my problems with social interaction and communication, my need for stability and predictability, and my obsessive collection of books and information, make sense. Being undiagnosed for almost 35 years, and struggling with so much sensory overload and burnout from trying to be neurotypical is probably at the root of my anxiety and depression. I still have my mental illnesses, because long-term depression makes changes to the brain, but at least I know why now and can mitigate against such bad episodes in future. With any luck.
I thought I’d share with you something I wrote, to explain to the psychiatrist what social interaction is like for me. The quoted it in my report, actually, so it must have been some help in the diagnosis.
A game I don’t know the rules to
Social interaction has always felt like a game I don’t know the rules to, but I’m forced to play. I don’t know how to play but I’ve got to play anyway. When I get it wrong, someone shouts at me, but doesn’t explain why I’ve got it wrong. And nobody will explain the rules even when I ask them to.
[Example – as a child I was constantly told off for not being ‘ladylike’ or for saying the wrong thing.]
In the end, I give up playing and sit on the side lines, watching and reading. I find that I actually enjoy watching everyone else play the game, but would rather sit under a tree reading. Then someone shouts at me for sitting under the tree, reading, rather than playing the game. Actually, lots of people are shouting/laughing at me, because I’m enjoying my books, not playing the socialising game. Everyone else is playing, why won’t I?
[Examples – Primary and secondary school – spent my time alone, I often talked to ‘myself’, telling stories in my head, or reading books. I struggled to make friends, and was quite isolated. People took advantage of my need to be friends, for instance, if I had sweets they would suddenly all want to play, or if was doing really well in a subject and people wanted help with their coursework, they were suddenly nice to me. I had only one friend, Fiona, since we were 12 she has been my social rock. I was bullied quite badly, I didn’t get the jokes or the innuendo.]
After years of watching others play, and reading books, trying to understand the rules of the game, I think I’ve got the rules down, so I try playing again. I manage for a little while. I get exhausted from playing, because I’m constantly having to dig out the specific rule for that situation. Inevitably, I do something wrong, forget the rules or am just too tired to play properly anymore. People start shouting again.
[Example – Last job – someone asked me how my weekend had been, it hadn’t been great so I said so. A few days later the manager called me in and sacked me. Apparently, when someone asks if you had a good weekend, you have to lie and smile, even if you were suicidal, because telling a co-worker that is inappropriate work conversation. Okay then, don’t bloody ask if you don’t want to know.]
Someone please explain the rules, and stop demanding I play the game if I’m not up to it.
For a very long time I assumed everyone else struggled with social interaction and they hid it better than I did, or that there was something broken about me because I preferred being by myself, or struggled to understand the jokes, or never quite got the dress-code, voice tone, emotional response right. Turns out my brain is just wired differently, and I respond to the world differently.
Asperger’s is part of the Autism Spectrum, and was first introduced as a medical, diagnosible condition in the 1980s, due to the work of the British psychiatrist Lorna Wing, who looked at the work of Hans Asperger in Austria from the 1930s and 1940s and realised there was a connection with ‘classic’ ‘infantile autism’, but without the developmental delays Kaner found in that condition. There are moves to acknowledge the spectrum nature of autism explicitly in diagnostic criteria, with the DSM-V used in the U.S. removing all the separate diagnosis and replacing them with a single ‘Autism Spectrum Disorder’ diagnosis, although in the UK most Psychiatrists are still using the ICD-10 which separates various sub-categories of autism into distinct pathological conditions, rather than the obvious spectrum that it is. Rumour has it that the ICD-11, currently under review by WHO, will follow suit.
By spectrum I don’t mean a linear ‘not autistic –> very autistic’ spectrum but a rainbow spinning disc. It’ll be easier to explain when I get the pictures out. Actually, go here, the cartoon explains it perfectly. Below is one part of it, but I recommend following the link and reading the whole thing. Rebecca Burgess, who drew the cartoon, has skills.
Anyway. there’s this thing called the ‘neurodiversity paradigm‘ that says autism spectrum conditions and other neurodivergent conditions and traits, like ADHD, dyslexia etc. are normal variations on the human brain, not aberrations. They aren’t diseases that need curing, but brains that process differently.
It can be disabling, however, especially when neurotypical and abled people are selfish bastards who expect me (and all other neurodivergent and/or mentally/physically disabled people) to do all the work and ‘be normal’, rather than them making an effort to meet us halfway. This reflects what, Fiona tells me, is called the ‘Social Model of Disability’, as opposed to the ‘Medical Model’. I saw a rather good graphic floating around that compares the two. Not the one below, but it’s near enough.
Basically put, the social model says we’re all valid variations on human and the human experience, but some of us need a bit of help to enjoy that experience. That help can come in the form of glasses and hearing aids, headphones and stim toys, lowered curbs and lifts, adaptions for daily living, suitable accommodation, supportive carers, teachers and employers who take the time to understand what a person needs to get the best from them.
Give me a quiet, naturally lit room, with no interruptions and a clearly defined task, and I can photocopy/scan a decade’s worth of files (did that at a clerical work experience job in 2015), write you a sterling, well-researched report (have you seen some of the science blog posts I’ve written?), build you a database of references (lab tech job 2007/8), go through that spreadsheet or presentation with a fine tooth comb, whatever needs doing, and you won’t be able to fault it. Except. I might finish the job sooner than you expect. However, if you stick me in an open plan, noisy, office with no natural light and constant chatter, and too much phone time or repeated unknown tasks (benefits contact centre 2014 – the things I want to say about that place would turn the air blue), I don’t function well. I might manage for a few days and then that’s it, I shut down. I might recover temporarily with a few days rest, but continued exposure to that environment and hello, depression and anxiety, my old friends, oh and look, burnout has come to join us.
The medical model says we’re broken and damaged, our lives are less because something is ‘wrong’ with us, we need to be cared for, separated from ‘normal’ society and fixed in some way, and if we can’t be cured we need to be prevented. This is the sort of thinking that put epileptics into asylums in the 19th century and still pressurises parents to send their disabled children to special schools where academics takes a back seat to forcing them to be as ‘normal’ as possible [Source: Fiona]. It’s the type of thinking that says ‘disabled people don’t have jobs, just hobbies, or volunteer positions’, [remember that taxi driver, Fi?], ‘disabled people are a liability in the workplace’, ‘disabled people should be paid less, because they are worth less‘, ‘disabled people don’t know what’s best for them so they shouldn’t be allowed to make any decisions at all’.
Treat everyone with kindness, you don’t know what’s going on with them.
Anyway, it’s late here, and I should probably go to bed. It has almost collapsed. I feel like I’m sleeping on a futon at the minute.
Also, I’ve been reading the second book I bought in my ‘student loan day spree‘ – Children of Time, by Adrian Tchaikovsky (he’s from Lincolnshire, you know), and I am enjoying it so far. The development’s of the Portia’s over generations is amazing. Love the evolutionary details. The humans and their conflicts are almost a minor part of the attraction of the story (the Portia’s are spiders, they have a very complex society).
Also, I have started typing up what I’ve written of my dissertation so far, but you’ll have to wait for Wednesday for a detailed ‘week 2’ update.