Getting a diagnosis

I received my official Aspergers diagnosis in March 2016, just two months ago. I managed to live 44 years on this earth without even knowing I have it. I’m not alone in this – how many more hidden Aspies are out there? Probably thousands. Prompted to write this by someone last week saying to me “If you don’t have any mental health problems, why would you even want a diagnosis?” So – here’s my story.

Two years ago, my dad’s partner said “if (Dad) was at school today, he’d almost certainly have a diagnosis of autism.” Dad agreed, with his characteristic grunt and lack of eye contact. That got me thinking. It made perfect sense. I’m very like Dad in a lot of ways. Then my partner said to me, after not connecting emotionally with me yet again “how about getting a diagnosis” There was nothing to lose. Jan 2015: I went to my GP to ask about referral to the local autism clinic, and was told “I really wouldn’t bother if I were you. They are far more interested in children, and those with severe problems. There’s a long waiting list.” But my partner and I insisted; I was perfectly entitled to at least try for a diagnosis. A long wait, and I heard nothing. In the meantime, my 9 year old nephew was diagnosed with Aspergers. He’s a gorgeous, endearing child, precociously clever, obsessed with plants and computer programming, with few friends his own age. He chats away endlessly at times, but does sometimes stand a little too close and stare. I’d never heard anyone suggest there might be anything really different about him. But he got his diagnosis. The media image we see of autistic kids is not ones like my nephew.

Jan 2016: I got a phone call, there was a cancellation at the autism centre and could I come that morning? I only had an hour, I had to go on to work. They could start my assessment but not finish it. It was fun to do! My psychiatrist was lovely. I spent a lot of that first session talking about my favourite singer. I had to wait nearly 6 weeks for the next session, but it was good to do in 2 parts- to do it all at once would have exhausted me. In between, my mum was sent a questionnaire to fill in, asking about my childhood behaviour – I told her to emphasise all the odd ways I was as a child, so I might get my diagnosis, and she did, bless her – without that I might not have got it. I am very lucky to have a supportive family- how many others have missed being diagnosed because they didn’t have something like the evidence my mum provided? I was told that I “ticked all the boxes.” Surprising, because I don’t have sensory issues, I’m not a creature of routine, and I don’t have temper or depression meltdowns. I had a small mental health problem in my teens, but that’s been all to date. I’d have thought I only ticked half of them. But Aspies come in all different shapes and sizes. I was told that “due to my high intelligence I have built up excellent compensatory strategies.” (Without wishing to boast, I was quite chuffed at that.) I guess I’m in a good position to help other Aspies which is why I’m writing this.

Since receiving my diagnosis, I have had mixed feelings. On the one hand, it makes sense of all the problems I’ve ever had in my life. It has improved my relationship with my partner (although it wasn’t bad before.) It helps me realise my strengths and my limitations. On the other hand, there is no treatment or cure for Aspergers, it’s something I’ll always live with, and it’s not something I can’t see myself talking about very often except with my closest family and friends. It’s like I’m carrying around this dark secret. I’d like to connect more with other Aspies, but there’s such a lot of negative stuff on the internet that just centres round people’s problems. That’s fine, but in my view it needs to be counterbalanced with more positive stuff. I hope in future it will become easier, as the world wakes up to seeing that we are just different, not disabled.

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Aspergirls and Friends

How’m I gonna let this go,
Am I someone I’d want to know,
Fearful twisting in the darkness alone.
How’m I gonna make me work in overdrive alert
I’m sorry I let you down
But I don’t remember it, remember at all.
(Heather Peace, I Don’t Remember)

If I met me, would I want to be my friend? Probably not. Little social blunders all the time. Too much eye contact, or not enough. Speaking out of turn, or not speaking at all. Harping on about something of no interest to the listener, or changing the subject entirely. Making people slightly uncomfortable, though they can’t quite put their finger on why. People talking to me politely, then turning round to have a much more dynamic conversation with someone else. Sound familiar?
I’m quite a sociable person, I do love being with people, but I have never really had friends, not what many people would describe as friends anyway. Now, amazingly, I have a wonderful partner and a lot of lovely acquaintances, and am rarely lonely. From the age of about 3 I had imaginary friends: I’m told the first ones were the Doctor, the Dentist and the Mouse, (although I don’t remember them!) “Friends” is perhaps the wrong word though, as I didn’t interact with them and I knew they were a figment of my imagination. My favourite game as a primary school child was inventing networks of imaginary people: I would cut pictures of children out of catalogues, give them names, put them into family relationships and school classes. Sometimes fictional versions of real people would join the networks too. I could have written books about them. Their activities tended to mirror what happened in everyday life: when I went to ballet lessons, there were ballet classes in my “school”, and when my sister took up horse riding, the “school” acquired a stables. I still think about a few of these characters from time to time, though not obsessively any more. They’ve grown up and had their own children now! Well, other people watch soap operas, so what’s the difference? Mine is far more creative as I invent the storylines myself.
As for real friends, I did try joining in other children’s games. Most of them involved running (tag, British bulldog) and as I was clumsy and by far the slowest runner, I was always caught. No fun at all. Now and again a group of girls might have a discussion, or enact a fantasy scenario, but I was a painfully quiet child. They would suggest to me what to do, but I hated being bossed around and I didn’t have the words to add my own ideas. Easiest not to join in. Playing by myself was the best option, and this I did, for 95% of my school playtimes.
I always longed for friends. Every time I went somewhere new where there were other children, I thought “it has to happen now, I’ll meet my tribe here.” I still think that way to some extent, though things have become so much clearer since my diagnosis, I now know my brain is just not wired for friendship as most people understand the word.
I remember in Year 4 primary (age 8-9) a new girl joined the parallel class to mine. She was exotic, she’d come from another part of the country and had an unusual name, and knew no one on her first day. I wrote her a letter saying how I’d love to be her friend and could I show her round the school? It lasted about 2 playtimes before she realized I was weird and not the one of the coolest kids in the year. Then I befriended the class naughty girl, who had few friends because she was so naughty. She taught me swear words that 8 year olds shouldn’t know, and inappropriate places in which to use them. She taught me how to insult kids who happened to be different in any way. What happened then? I got into trouble, of course. I’m absolutely not proud of that period of primary school. But I did have a few laughs, that I’d rarely experienced before.
Secondary school – first year, I hung around with a large gang of girls. I blended in. I said very little. I was good. People hardly noticed me. Then in the second year, our differences began to be obvious. I couldn’t do girly gossip. I wasn’t interested in the topics they discussed. Strangely, around this time someone did adopt me as her “best” friend. I didn’t even like her that much – nothing in common, but I followed her round for a few weeks like a puppy dog. Then, just as quickly, she unceremoniously dumped me and spent the rest of our schooldays making faces at me and telling me how ugly I was. I’d rather forget the rest of my secondary years. At uni, I began my current pattern of friendly acquaintances that has continued to this day and has improved as I’ve matured.
There have been advantages to having few or no friends. I’ve had plenty of time to pursue my creative interests, which need solitude and no interruptions, eg music practice. In a group, I’m good at noticing others on their own and talking to them, at least initially. Because I’m not tied into a friendship group, I avoid any cliques and think outside the box. I can be my own person, I don’t have to pretend to go along with things I don’t agree with. Nobody drags me down with petty arguments. If anyone tries, I will never take sides and will always remain neutral. But I’m still looking for my tribe – I’m guessing I might find something close to it among other Aspergirls??? If not, it’ll be fun to find out anyway…….