WHY THE 'LABEL' IS SO IMPORTANT

I’ve written before about identity and labels, eg here. But I think that I haven’t made it quite clear why one becomes the other, and why both are so essential.

To illustrate, let me give two examples from my own life.

The first is the ‘label/identity’ of being autistic. I grew up and spent decades of my adult life knowing I was ‘different’, but having no idea why. From the age of about seven onwards, I knew there was something ‘wrong’ with me, that I wasn’t like others, and much of my life has been dominated by that fact. I spent decades trying to either find out what my ‘problem’ was, or to get rid of it, to forcibly make myself ‘normal’, and just like everyone else. Neither effort was fruitful.

I became convinced that I was just not as good as other people, that I was weak, useless, pathetic, because I couldn’t cope with or do the things that others coped with or were able to do so easily. I was told ‘don’t be so sensitive’ ‘it’s not such a big deal’, ‘what are you worrying about’, ‘you’re making a fuss about nothing’, and so on. I was laughed at for ‘moving funny’, or ‘saying daft things’, or criticised for being ‘insensitive’ or ‘rude’ or ‘selfish’. It often seemed like nothing I did was right, I became scared to do or say almost anything. In the end, I withdrew from much human interaction, because I just couldn’t cope with it.

The result of all this is that I have suffered from low self-esteem, depression, anxiety and self-hatred for most of my life. This self-hatred went so deep, that even now, I haven’t gotten rid of all of it all. But an amazing thing happened, almost by accident. I began to read up on Asperger’s and autism, in order to help a student I was working with, and quickly recognised myself in the descriptions. To say I was surprised is something of an understatement. To say I was relieved, when I finally found that there were others like me, that I wasn’t ‘one of a (weird) kind’, a sort of lemon off the human reproduction line, is even more of an understatement.

What was a label quickly became an identity, as I studied more, read more, listened to my fellow autistics, discussed my ideas with them, shared my thoughts and feelings, asking ‘is this familiar to you? Have you ever felt/done/said this? Had this reaction from others?’ And the response was overwhelmingly YES! Yes, I know what you mean, yes, I’ve done that/been in that situation/felt that, yes, I’m like you.

I’m like you.

I wonder if anyone who’s never felt like they don’t truly belong anywhere can understand how profound that can be, to have people say that to you. To be understood, to finally, finally, FINALLY  know who and what you are. To be validated. To have the right word, the right ‘label’, the right IDENTITY, to describe yourself, a community to fit into, a ‘place’ to call home. To belong.

I don’t think there are words strong enough to describe that feeling.

This autistic identity is one that’s formed over the last ten to fifteen years. But there’s another, more recent, identity that’s been forming, and that’s to do with my sexuality and gender identity.

I always knew I was ‘different’ in this respect as well, and again, I had no labels for it, no words to describe it, I just felt an unease, a sense of ‘not fitting in’ to the prescribed feminine roles. I was designated female at birth, and have a female body. All my life, I’ve been okay with this in the sense that I’ve never felt like I’m male, but... I also always knew something wasn’t quite right (on top of the ‘difference’ I mentioned above, that is). I was called a ‘tomboy’ as a child, and had a sense that I ‘wasn’t like other girls’. Then as a teen and young adult I was totally uninterested in fashion, makeup, long nails, elaborate hairdos, etc. I conformed just enough to avert criticism, but never felt happy doing so. In fact all things ‘womanly’ felt… just not me, somehow. Yet  I didn’t like very ‘masculine’ clothes, or behaviour, either. I found both extremes not just an ill-fit but almost oppressive, like a sensation of being smothered.

Then, when I was in my mid-20s, I came out as a lesbian, and thought ‘oh, this is why!’ I joined the feminist movement and lesbian community, and for years this was my world. It liberated me (or gave me an excuse, take your pick) to chuck out ‘feminine’ clothing, ditch the makeup, and wear mainly jeans, t-shirts and sneakers. But I still felt somehow different to my lesbian ‘sisters’. I never called myself a ‘woman-loving woman’, for instance, as some lesbians did. I told myself it was because it was ‘too much of a mouthful’. I felt uncomfortable with many of their behaviours, and privately ruminated on how so many of the lesbians I knew hadn’t really ‘undone their feminine conditioning’. But I still felt like I was missing something. I groped for the words to describe it, I searched the literature, but there was nothing. Just a blank void that I echoed around in.

I struggled with relationships too – I always wanted to get to know a person first before jumping into bed with them. The result was that I’d often have to choose between being sexual before I was ready to, or missing out. Mostly, I missed out. And when I did get into a relationship, the problems weren’t over then. Some difficulties were due (I see now) to my undiagnosed autism. But there was also something else that yet again I struggled to define, a sense of being trapped by the ‘romantic’ role, or by simply being in a romantic relationship. And when it ended, my biggest feeling was always one of relief - the kind of ‘oh thank god’ relief that comes when you quit doing something that’s truly beyond your capabilities.

After my last relationship ended, I drifted away from the lesbian community, mainly because I just didn’t feel like i fit in. After a while, I found the autistic community, and made new friends. This soon became a new ‘home’, not least because of its higher rate of sexuality/gender variations, and higher rate of acceptance of them. Eventually, however, some deeper, nagging sense of difference reasserted itself.

I avoided (I realised later) describing myself as a ‘woman’, or even as a ‘lesbian’, and would say things like ‘well I’m female but not feminine’. I also developed an interest in reading about trans people, and in fact anyone else who didn’t fit into the gender binary. More recently, I also found myself reading about other different gender/sexuality identities, such as intersex, asexual, aromantic, all the grey and demi-identities, non-binary, etc, without quite realising why. I soon realised that I’m almost certainly ‘demi-sexual’, and probably also ‘aromantic’, though I’m still exploring both of those. It is however a relief to know that I’m not crazy, for feeling the way I do about relationships!

But it wasn’t till a trans woman friend chanced to remark “you’re a woman if you identify as a woman”, that something clicked for me. Because even as some part of me was mentally nodding, going ‘uh huh, yup’, another part of me suddenly said “….But I don’t identify as a woman”.

Well! To say that was a shock is yet another understatement! I reeled, and then it began to click. Of COURSE I’ve never felt like a ‘typical girl’ or a ‘typical woman’, I’m not one! I dived into exploring the whole non-binary thing, and was amazed. ‘You mean, there’s actually a WORD for what I am?’ There’s a reason I don’t feel comfortable with ‘feminine’ clothing, hairstyles, behaviour, etc, but feel almost equally uncomfortable with ‘masculine’ things/behaviour? There’s a neutral territory beyond gender, devoid of extremes, that not only myself but others exist in? Wow, wow, and wow!

Anyway, although many of my friends on Facebook already know, I guess this is my official ‘coming-out’ as non-binary! In case you’re wondering, I’m still fine with female pronouns, and have no plans to change my name or official gender registration, etc. (Please also note, I’m NOT criticising any non-binary who does, everyone makes their own choices according to their inclinations and needs, and this is mine. I’m too old, too cranky, too tired, too used to my current name - which I chose for myself anyway! - to feel any need to do it, even if I had the spoons, which I most emphatically don’t.)

This is my story, but it echoes that of many others too. Discovering that ‘label’ which becomes an ‘identity’ won’t solve all your problems (I still have plenty!), but it will solve one big one – that of your core identity; knowing who and what you are. No more floundering in whatever kind of social/emotional/sexual/gender/neurological wilderness you were in before. These labels I’ve mentioned, and so many others, are providing real clarity, real self-discovery, real comfort, and a real sense of belonging/solid identities for so many now. And no-one has the right to take that away from us, and to attempt to push us back out into that wilderness.

So think on that, before you disparage ‘all this fancy label nonsense’ or talk about how you ‘don’t want your child to be labelled’, or claim ‘it’s just a fad the young are getting into’. (Need I remind people that I’m far from young? And yet here I am, non-binary etc, anyway.) You may be denying someone the chance to find themselves and their true identity, and to finally feel ‘at home’ in their own skin.

So please, just think before you judge. Close your mouth, open your heart and mind, and listen instead. You might be amazed at what you find out about those you thought you knew.

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.

How To Dehumanise Autistics

Recently, I’ve seen a couple of items floating around social media either proposing that autistics should be killed, or that autistics and those who have autism running in their families should refrain from reproducing, to rid the world of the ‘scourge’ that is us.

Now, I don’t know if these are some horrible kind of satire or the work of (possibly fake) trolls, but it doesn’t really matter. Because it can only work as satire, or trolling, because there are plenty of people out there who DO have these attitudes, for real, even if they’re not usually so blunt about it.

These posts could be called ‘How To Dehumanise Autistics 101’. Here’s how you do it. (All italics are actual quotes from the above mentioned posts, some slightly abridged.)

1) Tell people that we are lacking in basic humanity.

Describe us in language that will frighten people who don’t really know much about autism. Tell them that we are not [in possession of] a fully aware sentient controlled mind, that we’re mental invalids, who are incapable of participating in the kindred spirit of human connection, that we have a deficiency of the essence of feeling, an inability to consider empathy, or that autism is the most inhumane, most destructive and dehumanising condition, in short that we’re the ultimate monstrosity.

2) Create an alarmist picture of ‘typical’ autistic behaviour.

Paint us as mass shooters blowing the brains out of kindergartners, or becoming stalkers, or simply as terrible things who tear our families to pieces, leaving our parents’ lives in ruins, who remain forever incapable of toilet training (what is with these neurophobes, that they always go straight to the faeces?), or the cause of public disturbances, or just claim that each of us cost the world a million dollars of medical care. A big part of much of this, of course, is assuming that we’re all low-functioning human pets, though even THAT picture is a distorted and incomplete one.

3) Insist our lives are ‘miserable’.

Tell people that we are doomed to suffering, spend our time banging [our] heads on the floor (or filling our pants, presumably), live lives of constant pain and hate [ourselves], and that those lives are incomplete, missing the most important components of humanity and sentient feelings. You might even claim that autistics themselves would like it if nobody would again suffer from the condition [we] have.

4) Suggest or even state outright that the world would be better off without us.

The bald advice of these people is to leave [us] by the riverside as babies, or that anyone on the autism spectrum or with… relatives with autism.. needs to be discouraged from reproducing. Because if you carry autistic genes… [they’re] not worth passing on. That we should dare to dream big, that we owe [it] to the future, in fact, to wipe autism from the face of the earth.

Never mind that much of this is contradicted by the evidence, eg that autistics actually have too much empathy, hyper-sensitivity, and all-too-aware minds. Never mind what should be obvious, eg that a kid banging their head on the floor is either in pain or in an extreme of rage and frustration. Never mind that most of us do not consider our lives, or ourselves, or our minds, ‘incomplete’, or ‘lacking’ in anything but acceptance and understanding from others. Never mind even that much of our ‘pain’ is actually caused by that lack of acceptance and understanding. Yes, even the so-called ‘low functioning’ (a label that is essentially meaningless in practical terms anyway). The attitude of those around us is *THE* biggest single indicator of the quality of autistic lives. Period.

Actually, never mind common sense or facts at all. Just go for the jugular, and fill people up with so much fear of us that they’ll agree to anything to get rid of us.

That’s how you dehumanise autistics.

We have been abused, beaten, denied basic human rights, had our intelligence discredited, been tortured with ABA, had bleach or turps or other horrible things shoved up our bums or down our throats, had our authentic autistic selves forcibly or even violently repressed, and much, much more, including sometimes being killed, because of attitudes like this.

I suspect that people like this haven’t actually met any autistics, even those who would be considered ‘low-functioning’, they’re just going by some mental image of ‘what an autistic is’. They certainly haven’t met me, or any of my friends. They haven’t seen their beautiful souls, their depth of compassion, their empathy for the underdog, their ability to create communities and support each other (that ‘kindred spirit’ it’s claimed we don’t have), their joy in their favourite interests, or helping others, or simply in small things like a drop of dew in a flower.

But I repeat – these people are have only *publicly* stated what many others are thinking or feeling, without much reflection. The media, the ‘martyr/warrior mommy’ movement, and Certain Big Autism Organisations who don’t actually include us or even attempt to understand us are largely responsible for this, but the attitudes are rife in the general public as well.

It’s these attitudes, not autistics, that I believe should be ‘left by the riverside’, and ‘wiped from the face of the earth’. Enough with the dehumanising. We’re people. We’re human. We’re here to stay. And we deserve better than to be treated this way.