I started working with Disabled young people when I was 23. Working with these young people, seeing how they went about in the world, how they focused on their interests, and their wonderful sense of humour. I just thought:
“I do that. I completely and utterly understand what you mean when you say something which other people might see as quite peculiar. I love making the sounds of a cat too – come meow with me!”
The more I got to know the young people I work with, I just thought “yeah, there’s definitely something here. This is interesting.” and then I reflected back on how I have always felt an outsider looking in, as if had this massive bit of information that had completely and utterly bypassed me for some reason. Maybe there is some element of language or something that just didn’t quite click with me. I thought about this for a few years and then I went in for formal diagnosis. I went to my GP and had a list of things I wanted to tell my Dr as well as my printed out results from online autism tests and she referred me for a diagnosis.
I waited two and a half years (the waiting times for diagnosis varies across the UK but it’s never a short waiting period).The service I got my diagnosis through were not brilliant at telling anxious, potentially autistic people what was going on or what was expected or what the wait time was going to be. The waiting was worse than the assessment.
I went in for a three hour long assessment with a mental health nurse in which they also spoke to my mother as they needed proof that my behaviours and needs started young. The diagnostician was real kind and explained things very well, they apologised for their typing sounds and had a table full of fidgets for me to use if I wanted. I took my bear, Rilakkuma with me and I was allowed to have breaks but after two years I just wanted to get it over and done with!
At the end of our session he said that he thought I was Autistic and he said that it would need to go to panel but it rarely comes back negative from there. He then told me that I should get my information through soon and he also spoke about the positives and neutrality of being Autistic too. He also wrote this in my diagnosis which I really appreciate.
I didn’t know at the time that you can also get diagnosed for other things during an autism diagnosis, so I also ended up with an OCD diagnosis. I got a two for one!
I got my diagnosis when I was 30 and that was it. I have received no help, no support or information since. I got my diagnosis paperwork through two months after my diagnosis but only after my husband rang them to see where it had gone (there was a clerical error which means my paperwork may have been lost forever if my husband had not chased this up).
Everything I have had support with since I have had to fight for and go through massive bureaucratic processes for. Much of the support out there is really inaccessible but perhaps that is for another blog post!