Yesterday, the following status appeared in my facebook memories from one year ago:
Did all that just happen? Now to try and remember what I was doing 3 weeks ago. And to consider what to do with the new information concerning how my head reacts to stuff.
At that point I didn’t mention on my facebook wall that it had been suggested by several people that I might be autistic. I just vaguely alluded to “new information” about “my head”. As far as I was concerned, the notion of me being autistic seemed extremely strange, extremely unnerving, and, as far as I knew at that point, extremely “not me”!!!
Oh, how I laugh at that last bit now!!!!!
I certainly wasn’t going to start chattering on about it on facebook at that time, and, as far as I can remember, I was still really regarding the whole “me being autistic” thing as one of those slightly wild ideas that folk have and that would eventually fall by the wayside as being just another one of those theories. I didn’t want to post something up on my wall, be shouted down by a whole bunch of people, and then unfriended by a whole bunch more. I wasn’t confident enough of anything at that time to mention the idea to more than my husband and one or two friends.
However, the fact that several people had, independently, suggested that I might be autistic was enough to make me take the idea seriously enough to do some research and see if I might find out what was at the root of their suggestions.
I did what anyone brought up with a toe in the world of science would do. I formed a hypothesis, which I called the “autism hypothesis” (i.e. proving the hypothesis would mean that I had gathered enough evidence to confirm that I was autistic, and disproving would mean that there was insufficient evidence and I wasn’t autistic and I could ditch the whole idea and just go and have a drink and forget about it).
So then I had to investigate the hypothesis. Gather evidence. Find out what this whole “autism thing” was actually about!
A friend of mine had sent a copy of Liane Holliday Willey’s Pretending to be Normal to me and I’d read it with a certain amount of bemusement – apparently it was something to do with autism, but it just seemed like a fairly ordinary account of someone’s life as far as I could tell. It was enough to convince me to investigate further, but I needed more INFORMATION! Actual information, not a life story.
And so I did the modern day equivalent of what my father told me to do when I was young. Back in my childhood if anybody wanted to know anything the answer was always to “get a book from the library” and to find out that way.
I have not been into a lending library for many many years (I think the last time I went into one was for a job interview and I was unsuccessful). And I don’t believe a lending library would have been much help to me.
So I tried Google, which was also no help because it presented me with page after page of search results about small children and parenting and so on. The world of adult autistic blogs was still inaccessible to me as I didn’t know what I was looking for, or that it existed, or how to find it. And it certainly wouldn’t have occurred to me at that stage that there were groups for autistic people on facebook or hashtags on twitter or anything of that sort.
So I went back to what I knew, which was books, and typed “adult autistic” into the Amazon search bar. And discovered a book with a promising title: Cynthia Kim’s I Think I Might Be Autistic (or as it subsequently became known in our household “The book with the pencils in the wrong order”).
And on the 23rd August 2016 I downloaded the sample from the start of the book onto the Kindle app on my iPad and had a look at it.
It pleased me from the start. It provided what I wanted – information, an outline of the diagnostic criteria for autism, and the start of a list of questions that was evidently continued beyond the free sample that I had. This book was speaking my language – it had facts and lists and promised to provide me with exactly what I’d been looking for to start to work on proving or disproving the newly-formed hypothesis.
My Amazon records show that I ordered the paperback copy the same day. And that was the day on which Time Stood Still for me. The 2016 calendar STILL shows 23rd August as the date, and maybe it always will. In Time Stood Still I referred to some sort of mental breakdown, which I now know to be a huge episode of autistic burnout.kn
It was to be months before I started to emerge from that burnout (and I still haven’t, fully) and from that moment almost my entire life was taken up with investigating the newly-formed hypothesis and, later, with trying to obtain a formal diagnosis.
I read the criteria from the sample of the book on my iPad over and over again, and waited for the paperback to arrive in our mailbox so I could try to work out what the diagnostic criteria actually meant, and whether any of them had any relevance to me.
With all that’s happened in the last 12 months, and with the knowledge I now have, it seems utterly extraordinary that it was only a year ago that I started seriously to investigate the possibility that I might be autistic.
And I certainly wasn’t telling anyone who didn’t need to know about it at that stage!
If anyone had told me I’d be blogging about it publicly within 4 months I’d have thought they’d gone mad!