After my last, slightly fluffy post about some of what it’s like to inhabit my brain, I’ve been sitting on this post for a while as a slightly drier, more factual, and hopefully more widely relevant foil to it. Autism is a huge subject for me for a few reasons — for a start, out of the 11 people in my immediate family on my mother’s side (up to grandparents), 5 of us are (or suspect themselves to be) on the autistic spectrum. Bearing in mind that the current figures show that 1.1% of the UK population is on the autistic spectrum (according to the National Autistic Society), you don’t need to be a mathematical genius to know that’s quite a lot. The research suggests that autism is genetic, to a degree, so it’s not so strange for the numbers to increase quite suddenly with us, but nonetheless, it makes quite the difference when you have to live with it!
My younger brother was the first one we really knew about, so to speak. He was diagnosed at 7 years old, and has proceeded to mix up the words “he’ll never do x…” with “game on” ever since, to the point where he is now the proud owner of lots of GCSEs, 3 A levels, and a degree. Being diagnosed at 7 did wonders for my brother, in terms of the support he got at school, college, and University. Being diagnosed at 21, for me, was perhaps a little less awesome. Being a girl, it was much, much harder for me or my mum to be believed about our suspicions — she started asking doctors and suchlike if autism might be a factor for me when I was around 6 years old, not dissimilar to when she started asking about my brother, who would have been around 4 at the time. He waited 3 years, I waited 15. It’s very difficult not to get really, really bitter about that fact, but my ever-logical brain at least has the ability to filter out the fact that it’s not his fault he got there first. The world seems to see autism as a basically male phenomenon, which when you consider the earliest research on the subject, is not surprising. The first research, by Leo Kanner and Hans Asperger, was done in the 1940s, and concentrated exclusively on small groups of boys, but it wasn’t until much later that autism became a more widely-researched subject, as Asperger’s work was in German and little-translated. It’s a very different ball game, being female and autistic, on the other hand, and it’s only now that research is beginning to catch up with the fact that there are probably lots more women with autism than previously thought.
When I was younger, I met a few girls with autism at my brother’s support group, and I remember thinking how similar they were to the boys, how obviously they fitted in with the group and with the dynamics going on. I assumed that this was how all girls with autism were, because that’s what autism was. I remember asking the first psychiatrist I ever met if I was autistic. I was 10, and he gave me a flat-out “no”, then and there. His medical opinion is not something I get to critique too much, in some senses — I asked him a question, he answered with his knowledge, in the best of faith. At the time, my mother and I were both seen as trying to tack me on to my brother’s diagnosis in a way, with sentences like “Mrs. R., just because one child has it, it doesn’t mean the other has to as well.” Attempts to deflect us off the idea of autism carried on, including a particularly inglorious moment when, on asking staff at my secondary school if they thought it was worth pursuing the idea, even if just to rule it out, there was a threat (albeit veiled) to go back to our family GP as if she were the one with the problem. When accusations like that start flying, the obvious move is to back off, of course, and I don’t blame her for that. I am angry that it had to happen that way, of course, and I am angry for my mother that her logical concern was swept aside as it was. She has never been one for hypochondria on either our behalves or her own, but her honest belief as a mother that there was something going on was shoved away as if it was her problem. Because, according to one teacher she spoke to, “girls don’t get autism”. But why don’t girls get autism? I mean, obviously we do, and the world is catching up to the idea, but why is it so hard to identify?
The answer lies in the fact that (shock horror), boys and girls operate differently. There are different issues that girls and boys face at various stages of life, and deal with differently because their brains are constructed differently. Tony Attwood wrote a fantastic article as an introduction to Safety Skills for Asperger Women by Liane Holliday Willey, which outlines much better than I can the differences in girls with autism compared to the largely male perception that exists currently. I’ve yet to do more than flick through the book itself, but the introduction, I can honestly say, changed my life. I can remember it very clearly: Mum had told me about the article, and she sent it all the way up the stairs by e-mail. Twenty minutes later, I tottered downstairs in tears. “Mummy, that’s me.”
This was a few months after I had to crash out of my third year at University in November 2012 due to mental health issues and stress (future blog post material, so I’ll keep this description brief!). On returning to my parents’ home, I got referred to my local adult mental health (AMH) service, which was, in short, a disaster. I had all sorts of potential labels thrown at me, and my suggestion of autism was binned almost before it had left my mouth. Because she was a Professional, and therefore Knew About These Things, I believed her, and tried to get on with life, with the result that Christmas was horrendous, and when the New Year came, my parents and I knew I needed to do something serious. In the end, our only option was to go private, and I for set up with an amazing, though sadly no longer practising, psychiatrist. He was the one who clocked that maybe an autism assessment wasn’t a totally stupid idea, and agreed that a definite no was better than getting noewhere. That was the 28th of February 2013, and he dictated the letter there and then to a clinic in London (again, private, as the NHS waiting list could have been up to two years for diagnosis) that would be able to sort me out. I had a pre-assessment in March with another psychiatrist to see if he thought we were barking up the right tree, and to also go through some of what it might mean to be diagnosed. On the 17th of April, I went in to see a psychologist, and complete my ADOS (Autism Diagnostic Observation Schedule) test.
The end product is that a week after I had this assessment, I got a letter through the door with the results. I was diagnosed with Atypical Autism, which means that although the psychologist was convinced I was on the spectrum, the scores I had from the test didn’t quite add up. The explanation for this was that because I had been suppressing myself so much for the entirety of my life, I was able to mask my symptoms. I had “acted normal” for too long to really count, numerically, but in the end, it didn’t matter. I had an answer.
So why is it important for me to write about this process? Why do I bother? Why did I bother finding out? For me, finding out gave me an answer as to why my brain works as it does, why I find some things difficult, what parts of myself I’ve been suppressing so as to “fit in”, and how I could be my truest self. I have been warned countless times not to let the diagnosis define me, and I admit, it was and remains a struggle I sometimes lose. But the truth is, in some ways, it does define me. It categorises the way my brain works, tells me that some expectations I have of myself aren’t realistic, allows me to direct myself better towards people, occasions, environments that aren’t going to send me round the bend. It tells me that how I feel, what I do, what I think, are different, but I’m still perfectly allowed to be myself. I am a square peg, that much is for sure, and I can now look for the square holes that will work, and start looking at whether the round holes in my life are still worth having (which they often are).
In a sense, this diagnosis does define me. I am autistic. I am different. I am me. My brain is constructed and wired this way. It may be a “label”, and I can completely understand some people’s aversion to sticking labels on people, but I prefer to think of it as a tiny lapel badge. It’s there, but largely unobtrusive. People can see it and ask, or not ask, or not see it, or have it pointed out, or know it’s there and carry on with their lives. But it’s mine. It’s my badge, it’s my label. And do you know what? I’m actually quite proud of it. As the mantra went around our house for my brother, “different is cool”.