I am taking part in the Instagram Chronic Illness January Photo Challenge, and I thought I’d try and write a few blog posts to go along with the pictures I’m posting. Today’s theme is ‘Diagnosis’.
One of my main motivations for writing about my experience with autism – aside from using the process of writing to help me work through my thought process – is to provide another voice for women who have lived a significant portion of their lives without knowing that they’re autistic. I’m certain I will know other people who are on the spectrum, but haven’t realised it, and if writing honestly about my experiences can help someone else make a connection with their own life then I feel I ought to do it.
So – diagnosis.
The first thing I did, before I even thought about seeing my GP, was an awful lot of online research. The process of thinking ‘oh my goodness… I think I might be autistic… everything suddenly makes sense…’ was quite a nervewracking one, because what if I was wrong? I don’t even know if I can explain how anxious it made me. Having just had this humongous lightbulb moment, which appeared to explain everything that I found difficult about life, and everything that I’d struggled with in the past, what if I was mistaken, and it turned out I was just not very good at being a human – which is how I already felt a lot of the time. I have worked so hard all my life to fit in, to be liked, to make other people happy, and never quite feeling like I was getting anything out of it. I couldn’t work out what I was doing wrong. Here I had potentially discovered an explanation for all of that. Maybe.
I had a lot of preconceptions about what autism is, and isn’t, and most of them were based on what I had learned during my psychology studies in the late 1990s and early 2000s. Back in those days, there was a very male-dominated narrative around autism (there still is, but it has got a bit better at least) and we were taught that women were very unlikely to be autistic, but when they were, it was very severe. We now know this is not entirely true.
There are some great resources online describing the experiences of autistic women, and I would encourage anyone who thinks they may be autistic to have a look at these.
Samantha Craft’s unofficial checklist (this was the one I found that made me realise I was autistic)
The Aspie Quiz (a screening tool – worth looking at)
I spent a long time reading everything I could find online about women with autism. (The above list is by no way extensive, a quick google will give you a lot more to be getting on with!) I also joined in conversations on Twitter with other autistic people, a lot of them female and late-diagnosed, like myself. The #ActuallyAutistic hashtag is a great place to start, and #AskingAutistics if you have any particular questions.
Once I was fairly convinced I was autistic, I decided that I definitely didn’t want to get formally diagnosed, that just knowing myself was enough for me. Then I decided it wasn’t. A lot of the autistic community are very accepting of self-diagnosis, and although I have no problem with other people calling themselves autistic on the basis of their own research, for me it wasn’t enough. I couldn’t allow myself to accept that I was autistic without an official diagnosis.
It was scary though, not least because of the over-reliance of male stereotypes in the diagnostic criteria. I had been reading about how it is much harder to diagnose women with autism because it often displays so differently, and the testing hasn’t really caught up with that knowledge. It took me a while to pluck up the courage, but eventually I went to my GP and asked to be referred for a diagnosis.
In the area where I live, the adult diagnostic service is contracted to an organisation called Healios, who carry out all their appointments online, over video call. It was a bit of a strange idea at first, but it actually worked out really well for me.
The first part of the diagnostic process was a questionnaire, which I went through with a clinical psychologist. There was 80 questions in total, and it took us about three hours to get through it all. (For anyone who’s interested, it was the RAADS-r.) To be diagnosed as autistic you have to have had difficulties before a certain age, so for all the questions I was asked whether this was something I’d experienced as a child, as an adult, or both. I found it hard work, going through the questions. Some of them were unexpectedly difficult, making me think about things in a way that I hadn’t before. Some of them I felt didn’t quite apply to me, but nearly did, and I felt anxious about whether that might be the male bias in the test showing up. I found the sessions quite exhausting, and usually needed to lie down for a bit afterwards! My psychologist was lovely though, and really supportive.
After the questionnaire was over, I had to see a different psychologist for what they called an ‘observation’ session. It’s best practice for autism to have more than one clinician involved in the diagnosis, so don’t be alarmed if this happens to you. The observations sessions were based on a test called the ADOS-2, and I found these even harder than the questions! One of the things I had to do was tell a story from looking at a series of pictures. I found this surprisingly hard to do and it made me quite emotional, but not nearly as emotional as when I had to make up a story completely from scratch, based on five random objects on the screen. The psychologist had done it before me (with different objects) to show me what he meant, and I remember doing a double take when he started telling me this story about ‘Mr Paperclip’ as it hadn’t even occurred to me to animate the objects like that. When it was my turn I stared at the screen, trying to copy what he’d done, make something up, and I just couldn’t. My brain froze. Even though the psychologist had literally just demonstrated how to do the task, I couldn’t do it. I got quite teary over it, but I’m not sure my clinician really understood why. It wasn’t really to do with the fact I’d failed at the task (he was reassuring me that I wasn’t the only one) but more to do with the realisation that I was being asked to do something ostensibly fairly simple but my brain simply did not work that way. In a way, it was validation that it wasn’t all in my head, but at the same time a wake up call about the fact that actually, some things are really difficult for me. All my life I have avoided stuff that I’m not good at, and I think I have some pretty deep rooted feelings of shame associated with failing. Perhaps that’s something to explore another day.
It took about three hours to get through all the stuff in the observations sessions (this was split over three sessions) and after that it was a couple of weeks before I was sent the draft report, formally diagnosing me as autistic.
The report, again, was difficult to read. I think it’s somewhat the nature of the clinical system at the moment, it’s all done on a deficit-based model, and reading in black and white about all the things I’m not good at I found really difficult. At the same time, having a formal diagnosis was incredibly validating.
If this happens to you, I would really recommend involving yourself in some more positive discussions around autism, and what it means to be autistic. There are some wonderful things about my neurology that make me exceptionally good at spotting patterns in things, that allow me to hyper focus on things I find interesting, that mean my attention to detail is second to none. I’m learning about myself more every day, whether it’s noticing things about how I’m reacting in certain situations, or having a sudden lightbulb moment about something that happened twenty years ago.
My diagnosis was not the end of the journey, but the beginning.