My Autism Story
If you’ve visited my blog before, chances are you’ve seen a post or two of mine about autism. With that said, it would be fair to say that this is nowhere near the first post I’ve written about my disability, although perhaps it should’ve been.
It didn’t occur to me until someone mentioned it that I hadn’t gone into much detail about how I got my autism diagnosis on my blog. I’ve spoken about aspects of it, but people always seem intrigued by the process leading up to it. I wrote a guest post about receiving a late diagnosis here, but that is still quite brief compared to where things really started.
In truth, I can’t remember a time when I wasn’t aware of autism. My older brother was diagnosed when I was young, and from then on, it seemed a natural part of life. That’s definitely an advantage in having disabled siblings because disabilities are never seen as ‘weird’ or ‘unusual’. However, he was the only influence I had at the time, so my thoughts about the condition were very much stereotypical.
Autism was first mentioned in relation to me when I was twelve years old, shortly after my mum had attended a Tony Atwood talk. There has been some controversy around the way he uses autistic people as the butt of jokes in recent months, but his expertise is something that should not be undermined. I recently watched one of his talks (you can view it here), and I definitely recommend it if you’re curious about yourself or a loved one.
Although I can now admit that those talks describe pre-pubescent me perfectly, I was at an age where I was prepared to do whatever it took to fit in. Puberty is the time where autistic people—especially girls—commonly fall behind their peers, and while this was definitely true for me, I was prepared to do anything to demonstrate that I wasn’t.
It was brought up again a few times after that, but the next time I remember acknowledging the possibility was when I was fourteen.
Without going into too much information, my mental health severely deteriorated from about the age of eleven. By fourteen, I was self-harming in various forms, and not in a great place.
I was watching YouTube videos at the time, when I looked to my suggested video and saw something about the correlation between self-harm and autistic females. I think it was then that I start to second-guess myself. Could I actually be autistic, even though I didn’t relate to what my brother experienced at all?
Much like when I was twelve, though, I disputed that this could be a possibility. I put it to the back of my mind and tried not to think about it, as I fell further and further behind my peers with no other explanation. I internalised a lot of it back then, thinking it was a problem I had to deal with. I was in and out of CAMHS (mental health services for young people in England), and convinced myself that I just wasn’t trying hard enough. If I really wanted to get better, to be like everyone else, then I would have to put more effort in.
It was only at sixteen, when I had been in a school for people with medical needs for two years because I could not deal with the pressures of mainstream education, that I started to believe autism was the answer. Or at least that it could be.
I didn’t go about it in the way most people at sixteen would have to go about it—through their GP. Instead, I had a meeting with the school, and my mum spoke to a community psychiatric nurse at the local mental health service I wasn’t engaging with. These two meetings combined led to me being put on the waiting list.
You hear horror stories of waiting lists taking forever, with a recent story suggesting certain places in London were going to reserve the diagnostic process for the ‘most severe cases’. I wrote about that a little in my blog post about whether getting a diagnosis is worth it, which you can read here.
When it comes to waiting list times, I acknowledge that I was extremely lucky. The process from the waiting list to diagnosis only took me six months. A lot of factors go into where you sit on the waiting list. For me, I think the fact that I was about to go back into mainstream education with college emphasised the urgency of my diagnosis.
I received my official diagnosis on September 23rd 2015, three days after my seventeenth birthday.
It has been almost two years since the day of my diagnosis, and every day, I am thankful for the knowledge it has given me. I wrote a post a year after receiving my diagnosis on what had changed then, and I have continued to learn since.
I’m thinking about writing an update when my two year anniversary comes around, so if that’s something you’d be interested in, let me know in the comments below!
I hope this blog post has been an informative blog post. Please remember that I am just one person, and my journey to receiving an autism diagnosis will probably not reflect another’s. With that said, if you have any questions about any part of the diagnostic process, or autism in general, I am happy to answer them if you leave your questions below!
Thanks for reading, and until next time,