On Wanting To Be Normal

Recently I wrote a post on all the ways in which I’m different from the mainstream. It’s made me more aware than ever of the whole concept of ‘normal’.

I know that there are many, too many, autistics out there who don’t want to be autistic. Who just want to fit in and be ‘normal’. I don’t agree with their stance, but I can understand why.

If you’re a young person who’s spent their whole life having it drummed into you that autism is a wrongness that needs to be Fixed, Treated, Managed and Social-Skills-Classed the heck out of you, if you’ve drowned in ‘behaviour plans’, IEPs and ‘special needs’, then of course you would wish you weren’t autistic. There are young adult autistics who refuse to identify as such, or even talk about it or be in contact with other autistics, because they’re so sick of all of that.

And if you’re an older autistic who’s spent a lifetime being put down, criticised, reviled, rejected, side-lined and/or abused for simply being what you are, struggling with co-occurring conditions like Executive Dysfunction or Sensory Processing Disorder, whether you have a diagnosis or not; if you’re unemployed, friendless, maybe homeless, struggling with depression, anxiety and other mental issues or addictions, then you’re not going to see much value in being autistic, and will likely reject the autistic community, think it laughable even.

I also know there are even autistics, both young and old, who support ‘that’ kind of autism organisation and their research into eradicating autism. I feel for them, I truly do, and I understand why they would do this, even if I don’t think it’s a good path to take.

The biggest reason not to take this path is simply this – it can’t be done. It’s gene-deep, brain-deep, neurologically-deep. It’s in your very nerves, muscles and cells. You can’t eradicate it. The only way to ‘rid society of autism’ is for all autistics to die and no more to be born, ie you can only eradicate autistics, not autism. Which amounts to genocide. And even if you don’t think this is a step too far, and/or you’re thinking well at least this would mean nobody would suffer like you have, consider that there are autistics who don’t feel this, who want to be alive no matter how difficult it is, and/or whose parents, family and friends, especially other autistics, very much want them to be alive. And you don’t have the right to decide for them. And that the biggest problem in all the above is actually people’s ATTITUDES to autistics. If that changed…

So my feeling is that we might as well accept it, even embrace it, and maybe even try to make the world a little better for all of us not ‘normal’, or at the very least give a giant metaphorical raised finger to the world, with our being proud to simply be ourselves. Because why the heck not.

In light of all this, I look at my own life, and while it’s been difficult beyond words, and there were long spells when I did try hard to be ‘normal’, I didn’t ever really see that ‘normal’ as anything wonderful. The paradox is that the very traits that make me different from NTs are the very traits that led me to think what the heck is so superior about these people? And this was long, long before I had any idea that I was autistic. This is the other thing at the heart of rejecting wanting not to be autistic – why would I want to be something I didn’t regard as an ‘improved model’, even if they obviously did? So no, I don’t want to be NT.

What about the other characteristics that make me ‘different’? Being gay, for instance? I’m gay/lesbian because I don’t find men attractive. So why would I want to be someone who did? And non-binary – same. If I don’t identify with either binary, male or female, why would I want to be someone who did? Then there’s being an aromantic - if I don’t find romance exactly thrilling, why would I want to? Same with being introverted, why would I want to be one of those noisy extroverts who plague me? You get the picture, I’m sure. It’s all the same paradox, knowing that the alternative is more acceptable to society, but I simply can’t find it an attractive enough state to want to be it.

So in what ways do I wish I was ‘normal’? I think the biggest thing I’d rid myself of, if I could, is my physical disabilities. I’d love not to have CFS, or arthritis, or even an ankle that hasn’t been screwed up ever since I broke it. I’d love to have normal energy levels. To get up in the morning and go about my day, without needing hours to rev myself up to regular speed, because if I rush, I’ll get dizzy, nauseous, sweaty and probably end up back into bed. And that’s on a good day. Bad ones, I likely never get up at all, except to take the pills that help prop me up, eat the foods I need for same, or to go to the bathroom. Bad nights, I barely sleep at all. And the next day or even days, just plain suck.

It would be very nice to get at least somewhat closer to normal than this. But I know it’s not going to happen, that there’s not likely to be a cure for CFS in my lifetime. And also knowing that ageing and lack of fitness have taken away a great deal anyway. Having CFS sucks, but so does getting old.

Another way I’d like to be ‘normal’ is to not be poor. But that’s linked to being physically disabled for so long, and to some extent to who and what I am. I was never good at jobs, and was forced to drop out of university because of CFS – an illness caused at least in part by the stress of attending uni without the supports I had no idea I needed. There are, I suspect, many autistics with CFS or some other stress-related illness or disability, not surprising given the amount of daily trauma we suffer. I’ve made a lot of mistakes in my life, but I think the biggest was forcing – pushing - myself to attempt ‘normality’, that it has harmed me on a very deep level.

In summary then, there’s not many ways I’d want to be ‘normal’, and they are based on things I don’t feel are intrinsic to me, unlike being autistic, gay, introvert, etc. If I could change my financial or physical status, I definitely would. But as things stand, I can’t. So I’m kinda stuck with them.

Being autistic though? I wouldn’t change it for the world. Even when it makes my life very, very hard indeed. I am what I am, and I refuse to apologise for it. And nor should anyone else.

All Autistics Are Traumatised

All autistics are traumatised.

This is the conclusion I’ve come to, after over ten years of being in the autistic community, listening to people’s stories, doing research, reading what parents of autistic kids have to say (and how they’re so often misinterpreting our behaviour), commiserating with our problems and woes, and thoroughly absorbing the general state of autistic lives and psyches.

We’re constantly being overloaded, stressed out, misunderstood, rejected, ridiculed, having our voices or our non-verbal attempts at communication ignored, having our intelligence denied or used as a putdown or an excuse not to give us services we desperately need, hearing ourselves described as ‘defective’ or ‘diseased’ or ‘damaged’, being excluded from schools, social gatherings or jobs, being bullied/beaten up/abused by family members or partners or schoolmates or so-called ‘friends’, with many of us ending up unemployed, poor, homeless, in mental health care or jail. We’re pushed to our limits and then over them. Constantly. Repeatedly. And then we’re told that “we’re not trying hard enough”, or that “we’ve brought it on ourselves”, and so on. The list is endless, you all know what we’ve had to endure, both individually and collectively.

There are undoubtedly some very young and/or lucky autistic kids with lovely, accepting parents out there, that haven’t yet been traumatised, but sooner or later, they will meet up with the circumstances that cause that trauma. They’ll be yelled at in a supermarket, encounter an unsympathetic teacher, get bullied in the playground or street, get overwhelmed in a mall and have their reaction misunderstood, (over)hear someone call them horrible things on TV or during ‘mom chats’ over coffee… and it will start.

I believe such traumas are inevitable, given the current public attitudes to autism and autistics. The only things that differ are to what *degree* we’re traumatised, and what our individual reaction to it is, at any given point in our lives.

But – and here’s the ghastly bind we’re in - too many people look at our traumatised state: the meltdowns, the fleeing, the banging our heads on walls, our extremes of emotion, our physical and sometime verbal lashing out, our problems in school or social situations or public places, or our co-occurring conditions or mental health problems, etc, etc, etc, and think/assume ‘Oh, that’s because they’re autistic, it’s an intrinsic part of their being autistic, therefore there’s nothing that can be done about it, look at them, they’re a huge problem for society, wouldn’t it be better if we could get rid of them/their autism/ensure more autistics aren’t born?’ And/or they see us only as ‘problems to be managed’ – something that tends to increase our trauma, not diminish it. With this attitude, about the best that can be expected is that they’re ‘nice’ to us, ie use us as inspiration porn.

This is so endemic, it even affects how we’re diagnosed. The indicators of our trauma are so engrained in the public and professional minds, they’ve become ‘diagnostic criteria’, so that kids or adults who don’t display such behaviours can either lose their diagnosis, or never get one in the first place. Even if our not displaying it is due to the pressures of ‘normalisation’, where we’ve been taught (or taught ourselves, in some cases) to hide our autistic traits and suppress those ‘symptoms’, at the expense of our long-term mental health. (Ie hiding the results of our trauma actually causes more trauma in the long run, which should be a no-brainer, but hey, you know, we’re not supposed to be human…)

But what if we were NOT constantly traumatised?

What if our autism was accepted from the beginning of our lives, and our families, childcare workers, teachers, etc, were educated about autism by autistics, and we were properly supported and accommodated through school, higher education, and into work? What if doctors, other professionals and autism organisations were truly educated about autism, and gave parents a positive view of autism, and referrals to autistic organisations, instead of all the doom-and-gloom stuff?

What if we were not assumed to be lacking in intelligence because we can’t use oral speech, or whatever speech we do have is limited, or ‘babyish’ sounding? What if we were taught to use sign language, cards and/or AAC systems right from when it first becomes obvious that we’re struggling with oral speech? What if we’re standardly given OT and various aids as soon as it’s seen we have trouble with movements? What if we were not laughed at because we’re adults who can’t tie our shoelaces or button our shirts? What if it was considered okay for adults to always wear polo- or t-shirts or slip-on shoes, and need help to cook/shower/whatever?

What if NT kids were taught social skills for interacting with us, while we were taught ‘this is how non-autistics think and feel and act, it’s up to you how much you want to do it’, rather than being effectively told that our way of being is ‘wrong’ or ‘defective, and forced into unnatural styles of interaction, simply to hopefully (and usually unsuccessfully) avert bullying and social rejection? What if NT adults were given awareness training too, in workplaces where autistic people work, or because they’re likely to come into contact with us in a professional situation, eg, cops, nurses, teachers, paramedics? What if it were simply a regular part of their training?

And what if supermarkets and malls and other shops had ‘quiet hours’ all the time? What if public ad campaigns about autism, similar to those about mental health, written by autistics and/or their allies, were regularly broadcast on TV? What if we had mentors to help us negotiate both social scenes and acquire practical skills, from getting our first job to getting a mortgage? For that matter, what if it became accepted practise for us to be considered for a job on our CV, references and a job trial, rather than be put through the torture of interviews, which we tend to fail?

I could go on, but you get the idea I’m sure. What if we weren’t being constantly traumatised? What if the whole public image of autism and autistics was turned around, and people actually accepted us as we are, and not only stopped abusing us, but gave us the support we really need? What kind of autistic would emerge? Who and what would we be?

I think we could be amazing. Actually, I think we already are, we just need the world to stop constantly dumping a tonne of excrement on us. Because if they did… we’d be even more amazing.

My review of 'THAT BOOK'

I’ve been trying for ages to write a review of THAT book. You know - ‘To Siri, with Love’. (I got it from the library, because not of all of us can afford to go out and buy new books, and anyway, why should I put money in her coffers?) Others have written theirs ages ago, but I’ve struggled with even reading it, picking it up and putting it down numerous times.

It’s not because it’s badly written that I’ve struggled so much with it. In fact, it’s fairly well-written, chatting away about her life and her sons, with that kind of wry, slightly self-deprecating humour which is always engaging. And she clearly loves her autistic son deeply, and he loves her too. He seems a loving, gentle, caring soul, and it’s great that she’s done what she can to nurture that. Also, she is in synch with us on at least some points, for instance (p 53) on stimming. (See, I’m trying to be fair.)

But. Sigh. I started to read - and the first sentence on the very first page, in the Author’s Note, says – “These days, it’s considered politically incorrect to call a person autistic.” Um… does she even realise that autistics themselves prefer ‘autistic’? Was she even aware of the existence of an adult autistic community, when she wrote that part? (If she wasn’t, I’m sure she is now!)

 A few pages later (p7), she utters what is really the defining sentence of the book. “Every person with ASD I’ve ever met has some deficit in their theory of mind.” Read that again – EVERY person with ASD. Someone has already written an excellent analysis of this, so I only want to say this – Theory of Mind (TOM), as a hypothesis, in my opinion, has more holes in it than a block of Swiss cheese. But even if it were true (and it’s a big if) – she’s forgotten one thing.

WE GROW UP.

The classic TOM tests are done on children. I don’t know a single adult autistic, no matter where they are on the spectrum, who lacks self-awareness, and who isn’t perfectly well aware that other people have different thoughts, feelings and opinions. We may have great difficulty in working out what those thoughts etc are, but we do know they have them. And, despite what she seems to think, I don’t think our difficulties with reading NTs (p 66) is a sign of TOM.

I soldiered on. Yes, all the horrible things others have quoted are there, and just as offensive in context as out of it. She asks, for instance (p 121), “how do you say ‘I’m sterilizing my son’ without sounding like a eugenicist?” Short answer – you can’t. And no amount of waffling on about the history of eugenics, or how there’s a “good success rate in vasectomy reversals”, just in case she ever changes her mind, will alter that. It isn’t even the issue.

The issue here is that IT’S HIS BODY. Not hers. His. It’s HIS right to decide whether or not he ever wants sex, wants to be a father, wants to have a vasectomy. Not hers. Got that, Ms Newman? And as for the ‘Benny Hill soundtrack’ comment, I’m old enough to remember Benny Hill, and frankly, I find it both revolting and mystifying to associate him in any way with that sweet boy.

I’m not going to dissect the book chapter by chapter – someone has already done that, way better than I could. My concern is rather with the underlying message of the entire book. Because despite her sometimes using adult autistics as a resource, her attitude to autistics in general is, well, troubling. I finally realised she really and truly feels, deep down, that being autistic is an inferior state, that to her we are a lesser breed of human. Even her attitude towards her own son seems rather like what you might have towards a beloved but somewhat less-than-perfect pet.

An example of this is when she compares her two son’s conversations with their friends. Her NT son’s conversation, riddled with smug one-upmanship, is somehow ‘better’ than gentle autistic Gus’s more straightforward communication (pgs 163-164), because it’s more ‘normal’, more ‘what friends are supposed to be about’. (Says who? Is there some rule book somewhere?) Or it’s more ‘proof’ of our lack of TOM. And on it goes. If autistic ways differ from NT, they’re bad, or lesser, or just wrong, or signs of a ‘deficiency’ in us… you get the picture, and I’m sure you’ve heard it all before.

There’s also her comments on autistic students at Cambridge objecting to Baron-Cohen’s suggestion that there will soon be a prenatal test for autism. While she allows that it’s okay to ‘not be normal’ (how kind of her!), she also says (p 213) “If you are on the spectrum and you’re at one of the finest universities in the world, you cannot speak for the person alone in a room, forever spinning the bright shiny object.” Translation: “you’re too high-functioning to understand/speak for the ‘really’ autistic”. I’ve already expressed my feelings about that sort of attitude here and here. Suffice to say that this kind of talk is both perpetuating a false division and unhelpful to all autistics. (Are you now understanding why it took me so long to read this book? It was all I could do to not repeatedly throw it across the room.)

And then there’s the issue of how she’s reacted to autistic objections to the book. Firstly, she seemed startled, saying that she hadn’t written it for autistics (imagine if a white woman wrote a book about raising a black child, then, when black people objected to her racism, said that she ‘hadn’t written it for black people to read’. Imagine the furore.) She’s followed this up with working systematically to silence our voices, even making pitying, denigrating comments about how our reactions are somehow ‘proof’ of that ‘lack of TOM’. Or perhaps, Ms Newman, we understand perfectly well when we’re being insulted and silenced, and quite naturally object to it.

The irony of us using the self-awareness and awareness of ‘different minds’ that we’re not supposed to have, in order to protest her state of mind, is not lost on me. It seems to be lost on her though – she seems unable to understand our states of mind, our opinions and feelings, how hurt we feel, how pushed out into the cold, how dehumanised, yet again.

This book is a strange mixture of awareness, confusion, misunderstanding, and sort-of-acceptance mixed with subconscious prejudice. It’s absolutely riddled with ableism. Despite being entertaining, despite it no doubt appealing to the ‘autism mommy’ crowd, it won’t make our lives any better. I doubt it will even make the lives of our parents any better, except perhaps in a “confirmation bias” kind of way.

The list of those who have done the autistic community a disservice is, alas, a long one. Ultimately, and sadly, Ms Newman has just been added to that list.