AAW #5: Women

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 ;)

 

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Things I wish people knew about my brain

This week has been a really, really tough one for me. In short, breakups suck, not getting the job you wanted sucks, and the two don’t really improve each other when they happen on the same day, combined with ongoing mental health stuff. However, in the course of everything that happened, I’ve been forced to look a lot at how people see me, and in particular, the things they don’t seem to get about me as a person with high-functioning autism (HFA). There seem to be some fundamental things that surprise people when I tell them, even people who know me really, really well. So, here’s a (edit: not so) wee list I’ve composed of things I wish people knew about me, and possibly about HFA more generally. It’s by no means exhaustive,  completely based on my personal experience, and isn’t really very scientific, so might be a bit fluffy around the edges. Here goes…

1. I am always acting

This is one of the biggest things for me when I’m in public. Whatever I’m doing, wherever I’m doing it, I am essentially acting. While I can do some bits of my social life instinctively, it takes me a long time to feel like I fit in a group, and to some extent, I’m always calculating how best to do something, say something, what to say, when to say it, who to talk to, whether I offer to buy a drink or not, and a billion other things. To an extent, of course, everyone is acting, because we have our public and private selves as a basic feature of human nature. I would argue, though, that this effect is heightened for me, because I simply don’t trust my instincts. Further explanation comes in the second point…

2. Social situations are learnt by rote

Being able to ‘skim read’ a social situation is a great thing, but not something of which I am capable in the least. For me, I have to read in detail everything that’s in front of me. There is so much social subterfuge about What One Does, what is acceptable when certain people do it, how “in” you have to be before it’s acceptable to do or say something, what comments are and aren’t ok to make. I can imagine a thousand reasons why I’m seeing what I’m seeing, or about why I’m picking up a certain feeling from someone, and I have no way of separating out which reason is most likely, not to mention what I should do with it (if anything).

The problem with all these questions is that they seem generally irrelevant in the end. I can worry all I like about what conversations are and aren’t ok for the day, place, time, company, or general alcohol level, but people often don’t see it except sometimes when I get a bit anxious. The cause of the anxiety, though, is generally rooted in a massive fear of Getting It Wrong, and being somehow punished or ostracised for it. I can’t ‘skim-read’ social situations, which makes being around strangers or going into a new situation really absolutely terrifying and utterly exhausting. On the other hand, I know that things like climbing, sessions, gigs, and parties are something I want to do, in essence, so it’s a plunge worth taking. It doesn’t mean that it’s not hard, though.

3. I can’t lie, and I’m less rude than I look

I genuinely can’t lie. Not seriously, anyway — a white lie here and there, or an economical approach to the truth on a particular point have been known to happen, but it took me a very long time to get there. If I am thinking something, I can’s easily hide it, particularly if I’m asked a direct question. This inevitably causes problems sometimes. People are frequently disarmed by total honesty, which I find really sad. I remember trying to lie when I was younger, and it just got heavier and heavier until I had to come clean, because I couldn’t keep it up. My approach is now an absolutely honest one, and I’m starting to allow myself to do it while also making sure I don’t end up being really rude. I know I look rude sometimes, or I catch people off balance with a comment or a question. For me, this is one of the biggest concerns I have about the entire social thing: that people will judge me by a standard that doesn’t rely on my honesty and my genuine desire to act in good faith at all times. I am honest, and I can’t really be another way without a serious amount of effort, which I’ve never found to be worth it. I know I get it wrong, sometimes, and it hurts people if I’m too blunt. The point is I never want people to be hurt by what I say, or offended, and it’s one of my greatest fears that it will happen without me knowing.

4. Getting my diagnosis allowed me to be myself, and questioning my need for a diagnosis is rude and hurtful

Diagnosis was a weird process for me (and the subject of a drafted blog post currently sitting about waiting to be finished). I was 21, had just had a complete mental breakdown that took me out of University for a year, and was (although I didn’t realise at the time) in the death throes of an abusive engagement that was going to end soon. The diagnosis was, in many ways, the easiest thing on my plate at the time, because it gave me a way forward with my brain and my life that meant I could really be me. I didn’t need to apologise for all the things that made me different from people. It took 15 years of questioning from my Mum and me to get anyone to listen. It took just over two months for the right person to listen, send me on to more of the right people, and for the letter to come through the door from the clinic confirming that I am, indeed, autistic. After the boiling, hellfire anger at having not been listened to for so long, and the immense sense of vindication at Having Been Right, I managed to pick myself up, and start be who I truly am.

For people who don’t get why it’s such a massive deal, my Mum described it this way. Imagine you are wearing a blue t-shirt in a room of people wearing red t-shirts. The colour difference isn’t the end of the world, and you’re quite happy with your blue t-shirt, but everyone around you is telling you it’s red. After a while, you give up arguing, you assume you must be wrong, that in fact you too are wearing a red t-shirt. Then someone comes along and tells you that you are wearing a blue t-shirt, and that it’s totally ok to be doing so. Confused? You probably would be.

Except this is way more than a matter of sartorial colour-blindness. Being denied the way I felt, the way I didn’t fit in anywhere, my suspicions of a reason that would have helped me rationalise how best to live was a massive deal, and took me to some seriously dark mental places that I won’t discuss here. I have been told by people not to cling on to my label, that autism is just a construct, that we’re all on a spectrum somewhere, that so-and-so doesn’t like parties or eye contact and they’re not autistic. Frankly, I don’t give a crap. I remember a conversation over a dinner last year with someone my own age, where they simply didn’t get the need to work out how my brain works, to the point where I was really upset and offended. Admittedly, there was more wine flowing than was conducive to having this conversation sensibly, but I felt utterly invalidated for a long while because I felt I was being told that my need to work out my brain and how to fit in my own skin was unnecessary, a construct, and basically not real.

Diagnosis brought relief, for me. Relief that I was able to wear my own skin, not the one the world had put me in already. Relief that there were other people like me, who knew they were like me, and could talk about it. Relief that I didn’t have to fit, that I didn’t have to conform to a standard that wasn’t built for my brain, that I could be me and could explain myself a bit. Naturally, there are issues around conformity, the need for it, and the need to explain one’s self, but for me, my diagnosis hits those boxes and allows me to be me. It’s not a part of my brain. It is my brain. It’s how I work, how I’m built, how I’m wired, how I am.

Now I’m worried that I’ve totally overdone this, that I’ve explained too much and have made myself look alien to the world. In truth, I am a bit of an alien, because the world isn’t built for people like us, people who don’t fit in whatever way. It’s a bit rubbish, but I still have to live, and work, and play, have my life and share it with the people around me. I just think that if people understood a little more of what is and isn’t going on, it would be easier for everyone. If you allow people to work on their own terms, whether that be gender, race, neurodiversity, height, musical talent, physical ability, whatever, the world gets easier to live in. Just because you don’t see what’s going on to make me different doesn’t mean it isn’t happening, and it certainly doesn’t make it invalid.

Hopefully the next post will be a little less heavy, but if you’ve made it to the end of this one, thanks a million. I’m not saying everyone has to change around autism. I’m hoping that a little more understanding going around will just help things go a bit smoother :)

AAW #6: Autism Acceptance

This is my last post as part of this project, I can’t believe it’s come round so fast! It’s also the post I’ve known I was going to finish with right from the start, and I think the most important of the lot. Awareness is one thing, and as I said in the first post, there’s nothing wrong with it whatsoever. However, stopping at awareness isn’t enough; you have to do something with that awareness for it to really mean much, otherwise it’s just another bit of knowledge you don’t use. For autism, I think one of the best and easiest next steps is acceptance, using whatever understanding you’ve gained to feel more comfortable with the idea of autism and not being afraid of getting it wrong.

There are those out there who actually refer to this week/month as Autism Acceptance Week/Month, which really speaks to the thing that we need. Unlike lots of awareness-raising things, it’s not that you necessarily need to be on the look out for symptoms, or getting tested automatically like for some cancers and things like that. It’s not that a simple blood test will allow you to be diagnosed faster, like with some cancers, or that it’s a dangerous thing to have or be around like infectious diseases.

Acceptance is about treading that fine line between treating people equally and accepting that you do need to treat people differently when there’s something going on. No, I’m not saying it’s easy or simple, and I certainly won’t claim perfection on my part. However, if someone tells you they have sensory issues to do with their autism, the acceptance bit is listening to them as to what might help, whether it’s something as small as choosing a different café because the light levels screw up their head less, or making alterations in a workspace to take account of the effects that sensory overload can have. I had a friend whose job included doing accessibility reports for places, and it’s encouraging that part of those reports did include discouraging harsh lights on the basis of sensory issues, which aren’t just restricted to autistic people. The world is getting there on realising how it can make things easier on a grand scale, albeit slowly.

The real acceptance, though, is from people. Individuals are the ones who can make the most difference to making life a bit easier. I’m so used to coping with the sensory stuff when out and about, it’s nice to be somewhere where it’s been considered, but it’s not essential. However, I’ve so far failed to get used to the way friendships seem to fizzle out around me because people don’t talk straight or don’t like it when I do. I still struggle to cope with the social anxiety when sensory stuff and having to talk to people when in combination, and the temptation is to just turn down social engagements full stop. I realise when I go back to University in September I’m going to have to bite the bullet, or end up being that reclusive classmate who never goes to stuff, and that’s my choice. However, what makes it a whole lot easier is not having to swallow or hide my anxiety and sensory overload in front of people. I am learning to “allow myself to be autistic” in public, whether that means I have to flap my hands when I’m stressed out (yes, “high-functioning” people stim too sometimes), get out and go somewhere else fast, or just have a hug and someone telling me it’s OK, that I’m doing alright, and no one’s judging me.

Naturally, my Mum is a pro at this, but she’s had a lot of practice, and it’s actually fairly straightforward, in a lot of ways. It involves listening to autistic people when they say what we need. Yeah, it’s that simple. We are gifted, very often, with the ability to talk very literally, and in a very straightforward, sometimes blunt, manner. If I say “I need to get out of here right now”, that’s honestly what I mean. If I say “the lights are really bright in here, but I’ll be alright for a bit”, it’s not a moment to panic, it’s a forewarning of the fact that my tolerance for that place isn’t limitless. If I say “my anxiety’s kicking up, I need to be outside for a moment”, that’s exactly what’s happening. If I say “please don’t touch me”, or “I can’t deal with this right now”, or “this is too much, please stop talking to me”, I’m not being rude, I’m telling you that I need space. It might seem unusual, and I might look rude while I’m saying it, but if I’m on the edge of meltdown or shutdown, it’s already taking everything I have to stay with it, and I honestly don’t have anything to spare.

Acceptance is not saying “I know about your autism, and I know better than you what needs to happen in this situation”. My Doctor might get to say that, a specialist psychologist might get to say it, and my psychiatric nurse definitely gets to say it, but no one else, not even my Mum. That might seem obvious, but I’ve had it said to me. In a complicated situation involving multiple disagreements, anonymous complaints, and a complete lack of understanding, I was told “the thing you will have to learn with your autism is…”. That would have been all very well if I didn’t already know the thing I was told I had to learn, and if the person hadn’t decided to condescplain (like mansplaining, but without the gender bit) to me about how my autism would work. It was hurtful, and made the autism (and therefore me) a scapegoat for all the problems that were happening at the time, removing my agency in the situation. Bearing in mind, also, that this was one of my peers, it’s doubly insulting that they chose to act high and mighty about autism without accepting their own culpability in the matter. I was not perfect, and nor would I have claimed to be then, or in fact, ever, but the attitude of overriding what I was saying about my needs is the very worst thing you can do with awareness of autism, I reckon.

Asking everyone else to be accepting of autism is one thing, but actually, the biggest thing I’ve had to do is accept autism in myself. I thought I was OK with it for a long time, particularly in the early months after the diagnosis. I was very (too?) open about it with literally everyone, and I probably became a bit of a bore on the subject (she says having churned out over 11,000 words on the subject in a week, and with no hint of irony). It took me years to realise that I was actually compensating for my own fears and the hurt that being undiagnosed had caused me. I railed against the man who said he didn’t want “children like that” (he was my fiancé at the time) and proudly declared how much I would love any autistic child I had.

Then, some months ago, it crashed in. I hated autism in myself. I hated it, and I hated myself for being autistic. I realised that I had been over-compensating for my autism in conversation, covering myself so that people wouldn’t find out my biggest secret, that I hated the thing that meant my brain was built that way. I realised that I didn’t want autistic children, not because of them being autistic, but because I couldn’t have had a child with a condition I hated so much in myself and not ended up projecting that towards them in some way, and that would be an intolerable thing to do to a child.

That was a long while ago, now, and I’ve been working on how to accept my autism as the defining factor it is on my brain and my life. I’m learning that it wasn’t my fault that nearly all my friendships over my life haven’t lasted, and were often a complete sham at the time too. It wasn’t my fault that I didn’t fit in, and there wasn’t much I could have done. I’m getting there, accepting who I am, finding people who I can trust enough to let them see my true self, and I’m being pleasantly surprised all the time at just how brilliant people can be over this sort of thing. I’m about to move somewhere new, and for the first time, I’m confident that I can be myself from the off, rather than hiding behind the confident front that I’m far too good at putting up. I’ve met some of the people I’ll be hanging out with already (hurrah for the folk world!), and found myself instantly accepted and, I daresay, even liked. I am more in touch with my proper self than at any other point in my life, and I have learnt that actually, autism might just be one of the best things about my brain. It gives me logic, intelligence, the obsessive tendency to pursue a single subject for a long time (which, as an academic, is often no bad thing), the ability to process facts fast, and the years of practice at reading people and situations that makes me insightful and sensitive.

Part of the reason I hated autism so much in myself was because of the rhetoric of organisations like Autism Speaks, telling the world that autism is a tragedy that needs to be cured and eradicated. It’s taken me a long time to stand up and say “actually, sod off, I don’t want a cure for being myself”, and to embrace the fact that my brain works this way rather than fighting it and trying to be normal. I had forgotten a vital thing that someone said to me during my diagnostic process. “You can be normal. You can fit in. But you will have to cut off bits of your brain to do it, restricting your natural tendencies, and it will involve sacrifices. It’s your choice, but you have to decide whether it’s worth it. You can’t be both.”

For a long time, I thought it would be worth it to fit in. I would put the effort in in public, often collapsing when I got home, in total sensory overload and unable to function. Then I realised that, actually, it’s alright to be me, and it takes far less effort than trying to be a neurotypical version of myself. I am sure that those who’ve known me over this process will have seen the change even if they didn’t register it, but I feel myself growing more confident in my autistic self all the time. I would never have dared do these blog posts this time last year, that much is for damned sure, and it still does feel a bit scary baring this much about autism and me in one go. However, I’m glad I’ve done it now. I like speaking up about autism, and the feedback I’ve had has been unanimously good and encouraging, which is even better.

It is easier to be myself in a world that doesn’t treat my self like an oddity. I am very much like other humans in a lot of ways, and in my case, I like to think my differences aren’t huge, though they are much more pronounced for some, including those who are more profoundly disabled by their autism. I want to be loved, accepted, heard, understood, listened to, and to feel safe in the world. As I said in the first post, it might just take a different approach.

That’s the end of my Autism Awareness Week 2016 series. Thank you so much to everyone who’s followed along and read these, or caught up later on. This is just a tiny part of the experience of autistic people at large, but it’s all my experience, and I understand from some of the comments that there’s plenty in there that people didn’t know previously, which makes my inner teacher go all warm and fuzzy. Yeah, I’m raising awareness, but we’re at the point where we know enough, mostly, to move on to the next bit, which is acceptance. That’s the bit we need to carry out of this week and into life in general.

Thanks for reading, and I’ll be back soon with, mercifully, something other than autism for a while!