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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