AAW #1: Autism Awareness

Ok, so the plan was to write a blog post every day for Autism Awareness Week (AAW), which is being celebrated (though I query the use of that particular word) this week, from yesterday, the 2nd of April, which was also World Autism Awareness Day, to next Friday, the 8th. However, I didn’t get my crap together in time to write the first post, so I’ve decided to pick it up today, and put what I think I’d have put in yesterday’s post in this one instead, plus a bit extra. In fact, I’m glad I missed it, because I didn’t get to catch up on the second episode of The A Word until just now, and it’s got loads of stuff that ties into what I want to talk about. This is all by means of saying that my accidental imcompetence is being made up for by an excellent round of coincidences that will cover my arse quite nicely. Onwards…

Awareness is something of a magic word, really. Honestly, I think it’s sometimes a thinly veiled, invented synonym for “money”, but cynicism aside, it still remains an important word and a good thing to do. I am now “aware”of prostate cancer, breast cancer, blood cancers, disabilities, trans* issues, domestic violence, mental health, junior doctors, stillbirth, and a million other things that aren’t floating quite as close to the top of my head. I get it. Awareness is free, but conversely seems to get people more willing to give money, which is what the clever people working these things out need. Awareness seems to give people a warm and fuzzy feeling when they raise it, and sometimes when they receive it, and fair enough. I’m the last person to say we don’t need awareness, being in possession of two invisible problems, one of which was missed for the first 21 years of my life, on which I’m prepared to put my house (that I don’t yet own, but never mind) that it wouldn’t have been so if I were a boy.

So, feeling warm and fuzzy that we’ve raised awareness or had our awareness raised is not, and I repeat, for those at the back, not a bad thing. On the contrary, it is excellent that we know about things, that we can know who to give our money to to make the bad things go away for the good, ordinary human beings who are being mistreated, misdiagnosed, or simply just missed. It’s taken me a while, but now I feel I’ve covered my back enough to get to the heart of my problem with autism awareness. Here it is: we aren’t being made aware of the right things all the time. Or rather, you, the public, aren’t. My awareness is pretty much tied to my awareness of existing, so it’s not entirely fair to count a life lived as an autistic person (or not) against the awareness that’s being spread around, you get my drift.

This is where The A Word comes in. It’s a new drama series, based on an Israeli drama called Yellow Peppers, about a five-year-old boy who has autism. Or rather, it seems to me, about how his family lament the problems of autism without really looking at the kid himself all that much, peppered with various sexual dramas that make sure there’s enough for the scriptwriters to work with. Wow, that sounds a bit harsh when I write it like that. I don’t mean to be unfair. I heard about The A Word a few months ago, and was really excited that we were going to get a whole drama series about autism. Naïvely, perhaps, I thought it would tap into some of the contemporary ideas about autism, i.e. that it’s just a Thing that makes up certain people’s brains in certain ways, but it’s not something scary and horrible. I thought we were beyond that. I grant that my direct experience of autism is limited to one family, my own, but I read, I observe, I try to learn what I can, and it worries me a bit that this particular drama seems so focused on the fear and horror of the parents as to what’s going on with their child.

I don’t entirely know what the process of finding out what was going on with my brother was for my parents, but I don’t remember it being such a big deal, with which Mum agrees. He was different, sure, but he went to mainstream school and flourished, and he’s continued to do so in whatever he does in the intervening 18-or-so years. What I remember of the day he was finally diagnosed is going to town with my Dad and Sister while Mum was with my Brother, and being allowed to choose one book. I don’t remember arguments, or my parents trying to make my Brother anything other than who he was and is. I’ve checked with Mum, and for both her and Dad, the priority was making sure that they worked out how best to help my Brother, along with me and my Sister, to be the best version of himself he could be. In fact, Mum clearly remembers being the one to bring up the idea of there being something to look for, meeting with some resistance on the way. The result is three children who’ve grown up pretty much alright, with our differences from each other and the world simply being part of the deal. They’re proud of us and our achievements, none more than the others, and none less.

Compared to The A Word, this experience is poles apart. Similar words, like “oh, that’s just the way he is”, are used to explain away what’s going on, rather than serving , as they did for my parents, as a simple explanation and a tacit suggestion that anyone who doesn’t like it can, frankly, do one. “What if they’re wrong?” wasn’t a question for my parents – they cared about getting it right, and still do, but the hopeful tone that comes over in The A Word from Joe’s Mum is really quite painful to hear. The exchange at the end of the episode really hit home, where Joe’s Dad calls out his Mum on her feelings of shame and mourning that she’s clearly (at least to me) denying because she’s ashamed of them. Meta-feelings, they’re a Thing.

If you’re going to raise awareness, it’s often a big task. Making something invisible, unknown, and/or under-studied into an issue that people are aware of and can use to be better human beings towards each other isn’t something to do lightly, and everyone has to start somewhere. The internet is full of people calling out the fact that disabilities are vastly under-represented in the worlds of TV and film, and we’re getting somewhere on that. My biggest problem with The A Word, though, is that it spends a lot of time on the various sexual intrigues going on, and a lot of time on how the parents feel about their son being autistic (not that the word is even allowed to be spoken in their house), but not really that much time on how Joe himself feels. This narrative, of how the parents of autistic children struggle so much and it’s so hard for them, feeds, for me, into the same sort of thing that Autism Speaks (hereafter, A$) say about autism. It’s a tragedy, we’re lost, we’re broken, we need to be cured.

I could rant about A$ forever, about how they are a truly abhorrent organisation, how they’re spending more on eugenics-esque research to eradicate us from the population, how they’ve made videos full of lies and hate about autism to “raise awareness” of how horrible a condition it is, how they manage to appear on the side of the anti-vaxx movement even though Wakefield has been debunked so many times I’m surprised anyone still knows who he is. It gives me the Angers in a very big way, which is an improvement on the suicidal depression spells it used to induce even if it does take more energy. (I would normally give links to this sort of content, but I refuse to link to A$ material on here – it’s easy to find via Google, please feel free, but I will not have them getting clicks from links from this blog.)

The A Word seems to be playing into this idea – the awareness that Joe’s parents have is of how “awful” autism is, how limiting the diagnosis would be for him, how he’s just a normal 5-year-old, it’s not a big deal that he is the way he is, he can’t be autistic, what kind of life will he have.

Last time I checked, my existence wasn’t a tragedy, I’m not broken, and I’m not defective. It’s true that I’m not in the best place right now, and my life has had, and will have its challenges. Autism did not do that. Not being diagnosed, not understanding myself while I was growing up, realising that I’ve been depressed for 40% of my life because I didn’t fit was what did it. Those things are linked to autism, for sure, but they’re more closely linked to the fact that we need awareness of the fact that autism affects women too, we need research on the differences between men and women with autism, and we need to make sure that when we say we’re going to integrate people into the mainstream, we bloody well do it. Integration into schools is great, but it means that there will be more kids coming out of schools, going into Universities and out the other side, who still need support. Again, that’s another blog post (sitting in my drafts pile), but it speaks to the awareness we really need and don’t yet have.

The best awareness we can get, and I’m definitely including myself here, is by listening to what autistic people have to say for themselves. For my part, autism makes me who I am, and I am learning to be proud of it and myself. It makes things difficult, and I would never, ever want to minimise the effects that autism has for those families with members who are more profoundly disabled, whether physically or mentally, than anyone in my family with autism. Disability is a big deal, for sure, and I realise that what I’m talking about here in terms of autism is very much a “high-functioning” version (though be wary of talking about function levels to autistic people, we don’t all like it). But let’s be aware of the fact that autistic people are everywhere, and that we will need help to make the world less frightening and horrible. It doesn’t take much, a lot of the time, to help someone if you listen to what they need, and that works for non-autistic folks as well.

We have voices. We are not all horror stories, but often we’re not the amazing hero-stories you hear either. I’m not a hero for living as an autistic person, and my parents aren’t heroes for “coping” with me (well, not on account of that at any rate). I’m not giving out stickers for being autism-aware, I’m afraid, and I’m sorry if that disappoints you. To be honest, what would really help is if people stopped raising monoliths as to “what autistic people are like” and judging me against them, do away with your stereotypes as to what you think I’m like based on the label I told you I have, and just treat me as, well, me.

I need you to see that I’m different, for sure, I need you to understand that this is the way I’m made and that it alters who I am compared to who you might assume I was based on the fact that I’m an articulate, intelligent, outgoing Oxford graduate. But I need you to see that I am a human who is made this way, autism literally written into my DNA (probably), and that it affects everything about who I am and what I do. Listen to us when we say we’re not broken, we don’t want curing. We want to be seen, heard, understood, loved, cared for, and accepted just like any other human being. You might just have to try something different to make it happen for us than you might for someone else.

I’m going to publish something every day for Autism Awareness Week, so I’ll probably expand on some of these points a bit in those posts. Please ask questions if you have them. I’ve said a lot here, and lots of it’s a bit rambly, but it’s all stuff I’ve wanted to say for a long time. Until tomorrow, then.

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5 thoughts on “AAW #1: Autism Awareness

  1. Can I be a bit controversial? Where do you stand on those people who think we don’t need to raise awareness because they don’t believe the condition exists for anyone other than the mostobvious (those children/adults who are non-verbal, have uncontrolled movements etc) or those who use the old chestnut ‘we are all on the spectrum, somewhere’?

    • Yay, controversy! I’ve never come across people thinking that autism is only non-speaking (non-verbal’s a contentious term for various reasons on the forums I’m on), physically disabled, and “low functioning” (ugh), and far more who just think you’re the Rainman or something. It’s about stereotypes, a lot of the time, which is where the real awareness comes in – listening to real autistic people about their real lives and experiences. If people don’t acknowledge that part of the spectrum that encompasses people who one might call “high functioning”, I think it’s actually just plain incorrect, so I stand where I always do on incorrectness: it should be corrected, but politely and in a reasoned, backed up manner. The thing with “we’re all on the spectrum somewhere” bothers me a lot too – I don’t really know what the aim of saying it is, but actually, the point of being autistic is that we have a diagnosis that says we are different, we have needs, and we process the entire world differently. Negating that difference by putting it in with the rest of humanity is counterproductive, in my view – you can’t celebrate or deal with difference if you don’t acknowledge it.

  2. I agree with you about listening to autistic people. The problem is, I think, that many people don’t have the opportunity to do so. Or perhaps the autistic people around them have not declared themselves so. Did you see the channel 4 programme about employment for autistic people? It was quite touching when the chap was offered the job after a trial period. Just shows that there is a place for everyone as long as there is tolerance and understanding. With regards to the ‘all in the spectrum somewhere’ thing…I have heard this so many times from people who have not had first hand experience of talking to autistic people. It seems to be their own excuse for what they percieve as odd behaviour. My response is usually along the lines of ‘no, that’s called individuality. Personal quirks do not necessarily put you on the spectrum’. In my job I have definately become more atuned to the subtle signs some children show before diagnosis. Very different to individual personality quirks.

    • To be honest, autistic people are speaking loud and clear all over the place, and there’s no shortage of opportunities to hear them if you look. The fact that it takes a fair amount of looking to find them is a problem in and of itself, no question, but we are talking more and more about what it’s like to be us, including my meagre contribution here. I haven’t seen the program you mentioned, but I have heard of it, and you’re right, tolerance and understanding is often the key.

      I agree with the difference between personality quirks and spectrum traits wholeheartedly. I’ve only ever encountered the “everyone’s on the spectrum” idea in conversations where people are casting shade on the idea of diagnosis, and basically trying to argue that autism isn’t a real thing, which is why it makes me quite as irate as it does. It’s usually used, in my experience, to justify a position and try to walk back attempts to invalidate the idea of autism and diagnosis, which is just generally not OK.

  3. Pingback: AAW #6: Autism Acceptance – C. E. Queripel

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