My Story

Welcome one and all to my new blog! For my very first post I thought why not go through what brought me to the realisation that I'm autistic, and ultimately to my late diagnosis in December.

The very first time that I ever considered that I might be autistic (although at the time I didn't see it as being at all likely) was way back around 2008 or 2009 when a girl I'd previously had a couple of dates with posted a link to an Autism Quotient (AQ - a bit like an Intelligence Quotient or IQ, but specifically designed around the autism spectrum) quiz on Facebook. I was bored so thought I'd give it a go and scored quite highly on it but I put it down to nothing but a daft quiz on Facebook and thought nothing of it after that...

That was until I met my wife Sarah a few years later and moved in together. We were at home one night in 2012 watching Embarrassing Bodies on Channel 4 and there was a bit at the end advertising their website and the quizzes and stuff you can do on there. So I had a look at it just for something to do, and when I came to the autism quiz I found that I'd scored the exact same on this one as I did on the Facebook one I'd done a few years prior - I think my score was 37 from memory. At this point I'm starting to consider the possibility that there might be something in it so I mentioned it to Sarah and I'd be lying if I said I wasn't shocked at her response of "It wouldn't surprise me." From there I started to wonder whether it might be worth me getting checked out for it although I still didn't really know anything about autism at the time. I knew I'd always been REALLY socially awkward, found it hard to make friends, and that I had a few interests that other people didn't seem to share with me in both the subject itself and in the passion that I had for it, but I'd never realised that it could be because I was different, even though at the same time I always knew deep down that I was different.

So it took me a long time to decide whether I wanted to be assessed for autism, and a long time again to pluck up the courage to see my GP and ask for a referral. From an outside perspective it probably doesn't seem like that big a deal, but I must have been 26 or 27 by the time I actually bit the bullet and saw my GP about it, and in all that time the only person that seems to have indicated that there might be something like autism at the heart of it was my wife, so there was a lot of self-doubt there. They referred me and I was assessed in 2015 in Leeds by a team who didn't seem to take me seriously, with the main assessor talking to me like a child the whole way through, and I got the impression she just took one look at me, decided "Nope" and that was that. I get that the tasks and the assessment were designed to diagnosed children, but there was absolutely no need to talk to me so patronisingly like a child. Anyway, the outcome of that referral was that I wasn't autistic, and their "diagnosis" was a lack of confidence, which I'm pretty sure isn't even a thing in medical terms.

Initially, I was happy enough to be told that I wasn't autistic, but then the more I thought about it the more it started to bug me again as me and Sarah both still thought there was definitely something there, and I was also bugged a lot by thoughts of "if it's not autism, what is it?" We moved back to York in late 2016 and I  soon started to think about asking for a second opinion now that we were in a different area that's dealt with by a different team at a different centre. It was another game of plucking up the courage to ask for a referral again, which I finally did in July 2017 and that started a waiting period of well over a year before I was even contacted with an appointment. It's during this waiting period that I watched Are You Autistic? on Channel 4, and discovered the online autistic community through that and the #ActuallyAutistic hashtag. This is when I started to learn more about autism as a whole. I really started to understand myself and embrace my autistic identity as I reached a self-diagnosis while I waited for the appointments for an official one. Let me take this opportunity to credit Neurodivergent Rebel and Agony Autie on YouTube as 2 of the main channels that I went to for support and information at this point (and I'm still a keen subscriber to both).

September 2018 I finally had my initial screening appointment in York and I could tell straight away that I was being taken much more seriously this time. The appointments were much more in depth than the Leeds one, they treated me like an adult and it was clear that they genuinely wanted to help me establish the cause of my issues. It was so different to my Leeds referral that I made sure I thanked the psychologist at the end of my screening appointment for making it so much better. For a part of the assessment they needed to speak to somebody who knew me as a child to find out what I was like growing up. I was reluctant to ask my parents because of what happened in my first referral. By that I mean partly the fact that I wasn't diagnosed first time around, but mainly their reaction to when I told them I was being referred in the first place. The first thing my dad did was laugh, until he realised I was being serious. He then told me "You're not autistic, you're normal" and stormed out of the room. My mum didn't pretend to understand or think there was anything there to be assessed, but she was at least willing to help me look for answers. One of the reasons me and Sarah think I wasn't diagnosed in Leeds was because my parents basically don't believe in mental health, and they've always put my social problems down to me being in hospital due to asthma for a lot of my childhood so I missed out on a lot of time socialising with other kids, so we think my mum's input with that didn't help. But again, the York referral was much more in depth and spent almost an hour and a half speaking to my mum on the phone, which is more than just the couple of passing questions that Leeds asked her. The other thing that I think made a difference at York was that Sarah couldn't make the appointments with me so I had to go on my own. I think a lot of the time I hide behind Sarah, so it seems to have been helpful this time around that I had nowhere to hide and couldn't do anything but openly and honestly put myself forward.

All the assessment appointments had been and gone, so all that was left was to go to a separate appointment for the results. Aside from a bit of a hiccup on the receptionists's part, it was all good news as they diagnosed me with ASD (Autism Spectrum Disorder) on 4th December 2018. What that meant to me was that I finally had the answers and the closure that I was looking for all that time, and I left the appointment feeling amazingly happy and giddy. The diagnosis was ASD rather than autism or Asperger's or anything else because it's all done under just the one umbrella term now, presumably in part due to the controversy over Hans Asperger's role with the Nazis, but I think that and the terminology that's currently used are different stories for another time.

So there you have it, that's my diagnosis journey, and because this year's World Autism Awareness Week is the first one since my diagnosis I feel like I should do my bit to raise funds, awareness and acceptance. World Autism Awareness Week is from 1st to 7th April, and I'll be doing a 10 mile walk on the 7th from York Minster to home. The link to my Just Giving page is below, and even if you can't donate you can help by sharing the link so that we can spread the word as much as possible.

www.justgiving.com/fundraising/DaveShaw13