On Being Comfortable In My Own Skin

Not many people know this, but I’ve kept journals on and off since my teen years. However I’ve recently realised that in all of them, I’ve been simply repeating the same thing in different ways – “I am what I am, this is me, I’m different, I’m different, and I cannot change.” And of course spilling out all the pain and trauma of trying to live in a world that just isn’t meant for people like me, not to mention the self-hatred, depression, shame, imposter syndrome, and sense of being ‘out of place’ that arose in turn out of that.

I tried tackling these issues through various routes over many years. I tried self-esteem and assertiveness training classes, peer support groups, various counsellors and psychologists, communication skills classes, meditation, self-help programs, and of course lots and LOTS of reading, but all to no avail. I still felt like the lowest of the low. My journal was often the only place I felt no-one would judge or condemn me for being ‘different’, the only place I felt I could be my true self.

But I’ve now reached a stage in my life where I have found that privately repeating the same old same old isn’t actually helping anymore, and instead my urge is to take what I know and feel out to the world at large. Journaling has transmuted into sharing with trusted friends in small groups or private chat, comments on various posts, or, most especially, the rough scrawling notes which I later compile into blog posts like this. It’s taken me a long time to get to this point, and there have been several pivotal steps along the way. The main ones have been -

1) Finding the autistic community. If I hadn’t found the autistic community (as opposed to the ‘autism community’), I would have gone on feeling like an error on the human production line, and that what I believed were my defects were something I had to hide for fear of rejection. I would probably have refused to even identify as autistic, because the official criteria for them just wouldn’t have seemed to fit. What, me, that terrible, almost sub-human creature they describe? No way.

But I did find it. And though I’m no longer rosy-spectacled about it, and will readily acknowledge that it’s far from perfect, nonetheless, it’s a damn sight better than nothing at all. Without it, I was lost in a social wilderness, stumbling and crashing my way through the world, feeling like a fool. But in our community I found for the first time people who thought, felt and acted like me, people who didn’t think I was weird or stupid or laughable. In fact some of them seemed to actually like me! Want to know me! This still sparks amazement, but also the warmth that only comes from having true friends for the first time in my life.

Even so, it’s taken over a decade of support and acceptance from my fellow autistics for this to truly sink in. For the damage of earlier years to be undone, and the messages of autistic pride and neurodiversity to seep down into the deepest layers of my subconscious. I think that even after I found the community, on some level I was still ashamed of being autistic, of being ‘different’. But over time, my attitude has been steadily transformed into “this is me, this is who I am, and if you don’t like it, feel free to go find someone whose company you like better!”

I do appreciate that not all of us have the freedom yet to do this, be like this. I hope that someday we all can. And nor am I going to claim that any of this is easy, or that I’ve magically learnt the secret of ‘loving myself’ that so many people have tried to tell me was so important. Rather, I’ve realised that you don’t need to ‘love yourself’ in order to reach a point where you stop and look at all the negativity that comes your way simply for being yourself, and think “you know what? This is rubbish.” I am what I am. We are what we are. We cannot be anything other. So what’s the use of flagellating ourselves for simply being ourselves? Self-loving isn’t necessary. Self-respect is.

And let’s note here that this also extends to all our co-occurring conditions, such as Executive Dysfunction, Sensory Processing Difficulty, sleep irregularities, alexithymia, etc. I used to feel a lot of shame around these, but after years of struggle, I’ve simply accepted that I have problems with things like organising myself and my time/belongings, sleeping regular hours, coping with various sensory inputs, and recognising what I’m feeling. I’ve learnt that it’s okay to be different, to have different needs, and to do whatever’s necessary to accommodate them. And to stand up for myself when people try to tell me otherwise.

2) Exploring new identities around gender and sexual expression. In the last couple of years, I’ve discovered there are actually new ways to describe how I connect to others, how I am in relationships, and how I define my inner self. Realising that I’m non-binary and almost certainly aromantic and demi-sexual has helped me clarify that my feelings around connection are not flaws I should overcome, but simply part of who I am.

And once again, the understanding that I’m not alone, that there are actually labels for all the feelings I had no words for, has helped relieve a lot of stress. I’m finding another community, one that often overlaps with the autistic one, and no, it’s not all about younger generations or being ‘trendy’, as if identities were like fashions. It’s about deep ways of being, and some of us older ones are finding a new peace and self-confidence in realising that we’re just not into romance, or that we need to get to know someone before becoming intimate, and that this intimacy may not include sex, that friendships can be just as powerful and important as sexual/romantic relationships. Being single is not an inferior state, and Romance is not necessarily the pinnacle of human connection.

3) Taking back my personal power. This has been perhaps the biggest step of all, and I couldn’t have done it without the previous ones. My whole life, it seems, I’ve been pushed around, dominated, bullied, manipulated, dumped on, scorned or belittled or outright abused. Over and over again, people have told me what to do, what to say, what not to say or do, how I should live my life, what opinions I should express and how, what I should or shouldn’t eat, what labels I should or shouldn’t put on myself, what I should write about, even how I should dress or walk or stand. And sad to say, I mostly put up with it, either because I was scared, or didn’t know how to stop it, or thought it was normal, or even that I deserved it.

But I’m tired of being pushed around, and I refuse to let anyone do it anymore. I refuse to put up with anyone telling me what to do, whether it’s a bully on a Facebook post trying to excuse other bullies’ behaviour, a martyr mommy telling me that I should shut up because I don’t understand what a ‘burden’ autistic kids are, someone sending me messages simultaneously putting me down and telling me what to do, a health professional telling me to eat foods I loathe or that I ‘don’t need’ vitamin supplements, or an obnoxious person in a public carpark trying to boss me around.

That’s not to say that all my old habits and reactions have completely disappeared. A lifetime of patterns of please-and-placate, submission-and-appeasement, aren’t easy to get rid of. There are frequent ‘knee-jerk’ reactions, but they’re getting weaker, and after a moment my new patterns of thought kick in and cancel the old ones out. I’m getting better and better at this business of standing up for myself, even if this simply means walking away from confrontation, or blocking toxic people. These can be acts of self-respect too. And this change is, I hope, the final shift, the final throwing off of the traces that once kept me bound, the last foundation stone of a life where I don’t have to hate myself, feel ashamed of myself, feel weak and powerless and stupid, and so on.

Anyway, this is where I’m at, right now. So much more comfortable in my own skin, and with the public expressions I have, that I don’t need a private outlet for negative feelings anymore. I can simply be, be myself, with all my faults and idiosyncrasies, but still a person worthy of life, worthy of expressing myself, worthy of a space in the world.

And so are all of you.

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.

About those 'low-functioning' autistics...

In my last post, I talked about the myth of the ‘high functioning’ autistic. Now I’d like to examine the issue of the supposedly ‘low functioning’ autistics.

Functioning levels are not something intrinsic to the autistic individual, but rather an indication of ‘how well this autistic person can pass for NT’, i.e. ‘normal’. The things that are likely to get an autistic judged as ‘low functioning’ include the following –

-They can’t communicate orally. (This, above all.)

-They’re not toilet trained at an age when most NT kids are.

- They seem - and I stress seem - ‘unresponsive’ to other people.

-They stim a lot, noisily, or at times and in places deemed ‘inappropriate’. 

-They have a lot of meltdowns.

-They fail IQ tests. (More on this below.)

There is an assumption that there’s a clear dividing between ‘high’ (HF) and ‘low’ functioning (LF) autistics – ie that we think/react differently or even that the LF don’t think at all. It’s especially assumed that if an autistic isn’t speaking orally, that means they have nothing to say, that their intelligence is minimal, and their potential almost non-existent. Their abilities and strengths get ignored, and if they express anger with their situation, it’s presumed to be just meaningless rage, somehow intrinsic to their autism.

Try to challenge how ANY autistics are treated, and you’ll bump up against these assumptions. You’ll probably be told that you “don’t understand” that “these people” have a lot of “problems”, and hence, in their minds, that it’s okay to do anything which might make them ‘pass for normal’. LF, in too many people’s minds, means ‘worthless’ or even ‘sub-human’, and so all sorts of horrible ‘treatments’ of ‘these people’ are justified. There’s a serious human rights abuse issue right there. Not to mention that this actually puts ALL autistics at risk, because at any point in our lives, any autistic can be deemed ‘in need’ of these treatments[i]. 

Yes, some autistics can and do have difficulties with things like knowing when they need to go to the toilet, or understanding what is being said to them because of auditory processing issues, or co-ordinating their limbs well. Well guess what, many so-called HF types have these difficulties too. Our abilities vary a great deal from one autistic to another, and an autistic can be ‘high functioning’ in some areas, but totally ‘low functioning’ in others.

This is backed up by how, whenever I read the words of non-speaking, ie supposedly ‘low-functioning’ autistics, I find that what they say isn’t radically different from my own internal experiences. The difference is one of degree, more than kind, and trying to define us by arbitrary levels sets up a false division. The only real difference is that I can (usually) communicate orally.

So when I see a supposedly ‘low-functioning’ autistic, I see something different to what most NTs see, because I’m looking at them through autistic eyes.

When others see an autistic ‘inappropriately’ stimming, I see an autistic trying to self-soothe, or one who needs to express their delight with something, eg a food treat, or seeing a favourite person.

When others see an autistic having ‘constant’ and ’inexplicable’ meltdowns, I see an autistic driven beyond endurance by sensory overload, communication challenges, auditory confusion, or similar.

When others see a ‘violent’ autistic, I see an autistic wild with frustration at their inability to communicate, or how no-one will listen when they do try to, or at how people treat them as though they’re stupid or unable to hear or feel, or who put them through trauma-inducing therapies like ABA.

When others see an ‘infantile’ faecal-smearing autistic, I see an autistic who is deeply sensory-seeking – or perhaps one who has learnt that this is how you make people actually notice you, even if it’s only to scold.

When others see an ‘unloving’ autistic who screams if touched and rejects hugs, I see someone with painfully sensitive skin, but who nonetheless is capable of love and affection, in their own way.

When others see an autistic who scores very low on an IQ test, I see one who was probably overwhelmed by an unfamiliar situation and people, or one who has auditory processing difficulties that get in the way, or who has severe problems with co-ordination, leading the testers to think “they don’t know what an ‘x’ is”, when in fact they do know, but can’t get their hands to point to the right picture.

When others see an autistic who ‘perseverates’, or who has a meltdown if dragged away from their favourite thing, I see an autistic with a special interest, who needs their favourite object or activity to keep calm, and who almost certainly hasn’t been given enough transition time, not to mention one who could, oral-speaking or not, make this into a life-enhancing hobby, or even a career.

When others see an autistic who ‘won’t let’ their family go places like out to dinner without ‘embarrassing’ meltdowns, or who ‘doesn’t appreciate the efforts’ their parents put into taking them on holiday in ‘nice places’, I see one who is never prepared for outings, who is ‘thrown in the deep end’ of strange and overwhelming experiences, and who finds crowded and unfamiliar ‘holiday spots’ sheer torture. In short, someone who isn’t trying to make their parents miserable, but one who is themselves miserable.

When I see an autistic who can’t communicate verbally, and is presumed ‘unintelligent’, I see an autistic who hasn’t yet found, or been given, the right means of communication.

I could go on, but you get the picture. And my biggest point is, that I see this NO MATTER THE AGE OF THE AUTISTIC, AND NO MATTER THEIR SUPPOSED ‘FUNCTIONING’ LEVEL.

To those who think that autism acceptance somehow doesn’t apply to LF autistics, I say this.

While all autistics are vulnerable to ill-treatment, and in desperate need of autism acceptance, I believe that LF autistics are actually the ones MOST in need of it, both for their own sakes, because they’re almost certainly the ones most at risk of abuse and mistreatments, and because if one autistic is at risk, we all are.

LF autistics desperately need those around them to stop, drop what they’re doing, and really look at them. Without judgement or pre-conceptions. They need to be accepted absolutely as they are, before those around them can really help them.

I’m not saying that there aren’t difficult parts of being autistic, I’m saying that the biggest chunk of our difficulties is caused by the lack of understanding and the right support from others – and that THIS IS TRUE FOR ALL AUTISTICS, NO MATTER THEIR ‘FUNCTIONING’ LEVEL. Instead of striving to ‘eliminate’ their autism, it’s far better if you work with it, strive to actually understand the kid, and go from there. 

So I will not let myself be artificially separated from the LF, nor abandon them to the not-so-tender mercies of those who claim to “know best” how to “handle” them. Because they’re my sisters and brothers, or the next generation of us. I’m not letting them go. I will continue to advocate for the LF when they can’t, and encourage others to listen to them/read their words when they are able to.

And I support all other autistics, and our allies, who are doing the same. We can’t afford to let anyone divide our autistic community. Because their, and our, very well-being is at stake.

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[i] Also read Amanda Forest Vivian, “They Hate You. Yes, You.”, pgs. 124-127, in Loud Hands, Julia Bascom (ed), Washington DC: The Autistic Press, 2012.