Blimey, only one post left after this one! Thanks to everyone who’s been keeping up with these over the week, it’s been really heartening to have the support behind me to keep writing. This is probably one of the biggest issues with my autism, and it’s also probably one of the biggest single areas of research that really needs work when it comes to autism in general.
Being female doesn’t mean that much to me, in general. I’ve never quite understood why lots of people get so hung up on it – I can see with people whose bodies and identities don’t match up why it’s a thing, absolutely, and I can appreciate that it’s an issue for people, but it’s never been something I’ve felt very able to join in on. I find myself arguing against misogyny more and more as time goes on, and I suppose I fall under the definition of feminist, but I’ve never found it a massively useful term, I tend to go with fighting bullshit where I can and not labelling it. These are my ways, and I have no problem with other people’s being different, but that’s just the way it is. Being a woman had little to no bearing on how I thought of myself for a very long time. Then I got diagnosed with autism.
There are a number of estimates about the diagnostic rates of autistic women vs. autistic men, and even more about the actual numbers of autistic women vs. autistic men. The one thing all these estimates agree on is that vastly more men than women are diagnosed with autism, and that there are probably still more men than women with autism, but that women are being seriously underdiagnosed. It’s not surprising, really, when you look at it – the original case studies that Leo Kanner and Hans Asperger used were predominantly male, and ever since then, the emphasis on men in discussions of autistic people has remained disproportionate. The research is beginning to catch up, but there’s a long way to go, and in the mean time, the problems can be huge for women who go undiagnosed.
For me, I spent my life not fitting in, and feeling constantly at odds with the world around me. I made friends with people who then bullied me, only to turn around and say we were friends really, thus dooming me to a number of long and torturous relationships right up to secondary school. I went to an all girls’ secondary school, where the pressure to fit in and be like everyone else came from even my closest friends, to the point where I could tell that at least one friend in particular was embarrassed by me. Orchestra and Wind Band were fun, for sure, and the musical aspect was a great leveller between everyone there, but it was still problematic, and I still felt there was always something I was missing that everyone else had. I have constantly put myself under so much pressure that I ended up having a full scale mental breakdown in my third year at University, which was what eventually led to my diagnosis. My entire life, I felt like I was different from everyone else, that I didn’t fit in, and I couldn’t even identify why.
I first asked a psychiatrist if I had autism when I was 10. He gave me a pretty flat out no. I had depression, anxiety, and was suicidal when I was a teenager, but that was just teenage angst, right? I had huge problems with friendships and bullying at secondary school, but again, girls are harsh when people don’t fit in, maybe just try harder. The heavy stuff came later, during the breakdown, when terms like bipolar II and borderline personality disorder started being thrown around, only to be withdrawn a week later, and for me to be told that I had to stop being so inward, and that the mental breakdown would heal itself if I went out and maybe did some volunteering (it didn’t – I was nearly hospitalised a few weeks later). Even after the diagnosis, someone suggested a personality disorder again during my latest spate of mental health problems. The inability for health professionals to see autism in women for what it really is is frightening, and the damage it causes is massive. My care coordinator has been great at trying to undo some of the nonsense with mis-applied diagnostic labels, explaining that my depression isn’t something bigger and scarier than I think, it’s just that emotional crisis affects me completely differently because I am autistic. For all his efforts, though, these things have been said, and still are said to women who might find a more accurate answer that covers more of their questions if they had an autism diagnosis.
Tony Attwood does a much better job than me explaining what autism looks like in women, but the main reason it gets missed so much, apart from the historical emphasis on men, is the tendency and ability to assimilate, cover, and apologise for differences. I “passed” for normal my entire life by doing that. Woo. Go me. I “passed” so well I might not have been diagnosed, because I masked my true self so well even in my assessment that the scores I got didn’t add up to put me above the autistic spectrum cut-off point. It was only because of what my Mum said in the interview she did about my early life and development that they concluded that I had “atypical autism”, which basically means “screw the numbers, this is what’s going on”. The diagnostic manual changed a month later, so that original diagnosis isn’t used, but I am referred to as have an Autistic Spectrum Disorder. Whatever, I’m autistic, the jargon doesn’t get me very far anyway, and if I focus on what was said by a psychologist 3 years ago more than what’s going on in my life now, I could quite validly be accused of missing the point.
I am honestly prepared to bet anything you like (apart from musical instruments) that these things wouldn’t have happened if I was a boy. My Brother was diagnosed at 7. Mum started asking questions about us both around the same time, and yet because I am female and “girls don’t get autism” (honestly a quote from someone my Mum spoke to about this), it took me 14 years longer to be diagnosed. I was bitter towards my Brother about this for a while, I admit, and I’m not proud of it because it’s not his fault. We’ve smoothed it over now in any case, but the discrepancy still exists.
Really, as Tony Attwood says in the article linked above, the basic autistic tendencies are roughly the same between boys and girls, they just manifest themselves very differently. I was just as obsessive about Tolkien as a boy on the spectrum might have been, but it was marked as an interest in fantasy literature and that’s just fine when you’re a girl. I liked wearing comfy clothes with pockets and having short hair, but that just made me a tomboy. I didn’t fit in with my friends, but I wasn’t trying hard enough. These and so many other things that we now recognise as signs were completely missed, meaning that decades of support I could have had to make life easier for me weren’t accessible to me. The worst bit of it is that I’m not the only one. I know people who went through similar mental struggles to me and have come out the other side, finding their autism diagnosis, whether self-applied or professionally sought, many, many years later than I did. Many still suffer from depression as a result, and I know, certainly, that for me, it’s going to be a long time before I’ve patched up everything in my own head about this.
The research is happening now. There are books about autistic women, often by autistic women, and there are more of us talking about it by the day: parents who’ve found their diagnosis via their child’s, people like me who had a crisis early in their adult life and needed answers, younger girls whose parents finally realise that this might, after all, be a viable explanation for whatever problem is going on.
Even though autistic people are so under-represented in the media at large, there is at least one autistic woman on TV that I know of. Saga Norén in the Nordic crime noir drama The Bridge is an amazing portrait of an autistic woman, and really resonated with me. I can’t tell you how amazing it felt to be legitimised by seeing someone so like me on the TV, having not really realised these characters could exist. I don’t tend to cry at TV programs at all, I’m just not one of those people who do, but when Saga went into a fullscale meltdown and emotional collapse at the end of the most recent series, it hit me hard enough that I did. I recognised her struggle, her breaking point, the moment where she didn’t know whether living was worth it. The fact that the writers gave her someone to cling to in that moment as well was the most heartbreaking bit. Someone who understands her, cares about her, and gets that she needs what anyone needs in a moment of crisis: just someone to be there. Saga is my TV hero, right down to her amazing boots, and the fact that she exists on TV at all is completely brilliant too.
We are becoming more visible, but I’ve still lost count of the number of times someone has cast shade towards my diagnosis because they only thought it affected boys. It doesn’t, and it’s getting towards being as behind-the-times to suggest otherwise as it is to suggest that vaccines cause autism in the first place. We as a world need to understand a bit more about autism to catch up with the number of women who are autistic, so that we don’t blink when they identify themselves where we might not with a man. We need to understand that autism looks different in women, but that it is not less just because it’s the one we know less about, and it’s still the same condition and needs the same considerations you’d make towards anyone else with autism. “Looking normal” isn’t altogether indicative of there being no neurodivergence in there. It’s about time we learnt that and did something about it.
The last post in my Autism Awareness Week series will go up some time tomorrow, and then I promise I’ll stop talking about it *all* the damn time ;)