A Manifesto of Self-Worth For Autistics

I don’t know who in the autistic community needs to hear this, but I am telling you now –

YOU ARE WORTHY.

You are worthy of your space here on this planet, of being treated with respect, and of treating yourself with respect, no matter what your situation, or your feelings, or how others are rating you or treating you.

Because autistics don’t have to be perfect, or anything close to it, to be worthy of that. Nothing we do, or say, or are, or have experienced, matters beside this fundamental fact. It matters only that we’re human, and we’re here.

So it doesn’t matter if you make mistakes in life. Even a lot of mistakes. Even if it seems you do nothing but make mistakes. Or your mistakes feel like earth-shattering ones you’ll never recover from, or you’ve suffered severe social rejection/isolation/bullying/ridicule/whatever because of them, or for your stims, or for ‘just being weird’ either.

It doesn’t matter if you have public meltdowns so bad that even the memory of them makes you cringe, and you’re embarrassed to go back there or see those people again, and often ‘burn your bridges’ as a result.

It doesn’t matter if you ‘can’t get your act together’ (especially as mostly what people mean by that is that you should stop being autistic), or if it always feels like your life is falling apart, or that you never got it together in the first place.

It doesn’t matter if you’re unemployed, or homeless, or you’re in some other horrible situation that you can’t escape, because you simply don’t have the skills or emotional resources or practical support to get out of it. Or you have gotten out but still suffer from PTSD or other mental unwellness because of it, or you feel ashamed of having been that, or been through that.

It doesn’t matter if you need daily help to move through life, and nor does it matter if you don’t have and can’t get that help, so that everything feels like a total mess, or the help available is demeaning and patronising or even abusive, or just not what you actually need.

Nor does it matter if you’re not oral-speaking, or only intermittently so, and you’re deemed ‘low-functioning’, or you’re incontinent/faecal smearing/head-banging/whatever, so no-one expects anything of you, and treats you like a child or like you have no mind of your own.

It doesn’t matter if you are or have been incarcerated in an institution or prison or mental health facility, for whatever reason, and you’re ashamed of that, and feel that you must be a ‘bad person’.

It doesn’t matter if you’re poor, or physically disabled, or old, or single, or don’t fit into the whole cis-hetero thing, or people constantly tell you that you’re ugly, stupid, etc, or that you ‘deserve’ the bad treatment you get.

It doesn’t matter, even, if you can’t love or even like yourself, or you maybe really hate yourself, or feel you lack the qualities that would render someone likeable or loveable.

Ultimately, none of that matters. You’re still worthy anyway.

No matter your situation, no matter your ‘issues’.

Because you still matter.

You still have worth. You are still worthy.

You are still worthy.

YOU. ARE. STILL. WORTHY.

And, at the risk of sounding like I’m belittling other liberation movements and their very real struggles – which I’m definitely not – ultimately, it doesn’t matter how many other minority groups you belong to either, because YOU ARE NOT ‘LESS THAN’ because of that, because of your oppression being intersectional. You are STILL worthy of better than whatever bad treatment has been handed down to you because of all of it. ALWAYS.

Because you deserve better than what you’ve had up till now. All of us do. All of us autistics deserve better, all of us are worthy of all the rights other human beings can claim, as well as the right to freedom from the oppressions particular to our lives. Most especially, you are worthy of being counted as human. Even when others do not and will not count you as such – in fact, most especially when that happens.

Because those attitudes, those people, really don’t matter either. Not when weighed against the fact that you – all of you, all of us - are most emphatically still real, still human, still entitled to being treated with decency and respect, still worthy of the space we occupy and the air we breathe, still worthy of people’s time and attention, still worthy of a life where we can openly and freely be our authentic autistic selves and live our lives the way we want and need to live them, still worthy of the right to hold our heads high and be proud of being autistic.

So all that other stuff doesn’t ultimately matter, when it comes to our demanding our rights.

And these rights are non-negotiable, for each and every single one of you. No exceptions. You don’t have to prove anything, live up to anyone else’s standards, become what they want you to be, in order to qualify. Your existence is enough.

Because you’re worth it. You’re worthy of it, of those rights. You all are.

And I’ll say so again and again, for anyone who needs to hear it, even if you’re hearing it through your tears, through your rage, through your fear and pain, through your shame and self-hatred. Because – I repeat - you don’t have to do or become anything in particular to be worthy of the same rights and freedoms that others have.

You just have to be you. Autistic, and human.

And that’s enough.

Never forget it.

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.

The Emotional Difficulties of Autistics

Over the years, I’ve heard lots about the problems associated with being autistic – our sensory, social, executive dysfunction issues, etc. We have discussed them often, and often at great length. But I’ve never heard anyone, on the spectrum or not, talk much specifically about our emotional issues. They seem to be largely ignored by NTs, while autistics simply suffer through them.

And yet they loom large in our existences, often dominating our thoughts and our days, dragging us down into depressions or other mental illness, hampering our efforts to live full and good lives, and often leaving us feeling ‘stupid’, ‘inadequate’, ‘over the top’ or somehow ‘just wrong’ for having them.

Some of our emotional issues are internally caused, eg by alexithymia. We may not feel anything, when we think we ‘should’. Or we know we’re feeling something, but we’re not sure what. Or the feelings rush in, uncontrollable, overwhelming us, almost drowning us. Or they come at a time or in a way that’s not ‘appropriate’, causing us embarrassment, shame and distress. Simply identifying and managing our emotions can be an enormous battle in itself – and leave us feeling stupid and ashamed, simply for having to wrestle with something that ‘everyone else’ seems to manage okay.

And then there’s the emotions caused by our struggles with executive dysfunction. When your living spaces are knee-deep in chaos, you can’t seem to organise your way out of a paper bag or get to anything on time, can’t get proper meals together, and you feel like you look like you slept in your clothes (and maybe you did), and somehow it’s ‘all your own fault’ and you ‘just need to shake up your ideas’ (as others will no doubt tell you), it’s difficult to feel good about yourself, or about anything in your life. This can fill us with shame, embarrassment and anxiety, and cause low self-esteem and depression.

There’s also our social problems – by which I mean how people react to our efforts to connect with them, or simply co-exist with them. When our social efforts aren’t recognised as such (eg because we’re non-verbal, or we don’t do it in the ‘appropriate’ way), or we’re criticised, yelled at, laughed at, ridiculed, bullied, physically attacked, rejected, snubbed, etc, then we naturally feel a range of emotional reactions. Few of these are acknowledged or validated by non-autistics – in fact our reactions (eg meltdowns, social withdrawal) tend to be blamed on our autism, rather than being understood as reactions to how we’re being treated.

Sensory issues often compound our social problems of course – and add to the possibility of meltdowns, shutdowns, fleeing, or getting a negative reaction from others when you ask for help. If you’re constantly being told that you’re ‘making a fuss about nothing’, or to ‘stop your whingeing’ and that you should ‘just harden up’, it’s hard not to feel ‘weak’, ‘stupid’, scared and inadequate for this on top of all your other problems.

And then our responses to all these can be in turn be misunderstood by others, causing us to be dumped on even more, stressing us out even more... A vicious circle, causing a potent stew of pain, shame, self-loathing, anger and anxiety, which can see us so overwhelmed we end up curled into a sobbing heap under a pile of blankets, pacing back and forth stimming wildly, posting frantic requests for support on social media, or even self-harming. And then we feel shame for having those feelings, and shame for feeling shame… on and on it goes, till many of us are simply, well, broken.

A lot of our emotional issues are caused, therefore, not just by our ‘issues’, but by other people’s reactions to those issues, and/or by not having the right supports. In fact we’ve often had to create such supports for ourselves, or sometimes clued-up parents or aides will, by creating ‘emotion charts’ to help us name a feeling, visual or electronic schedules to help with time management or household tasks, specific guidance with social issues, and so on. But this help varies extremely widely – it’s often a matter of good luck rather than good policy, and the result is we suffer far more than we need to. It’s all a bit of a mess, really.

So I want to say this to autistics – that THERE IS NOTHING WRONG WITH YOU FOR FEELING THE WAY YOU DO. Your feelings are valid, a perfectly logical reaction to the pressures and stresses of our lives – including those stresses not being understood. You have the right to your feelings, and the right to seek support. And, flawed as our autistic community can often be, your fellow autistics are almost certainly the only ones who will understand and accept your emotions, and be able to help you through them, because we’ve been there too. Find your own tribe.

And to neurotypicals, I want to say this. If you want to know why we autistics have such a high rate of mental illness and suicide, LOOK NO FURTHER THAN HOW WE’RE TREATED. If you want to ‘fix’ our emotional states, first acknowledge our issues, then help us find the tools to do something about them. And change social attitudes to the autistic while you’re at it. Simply assuming that they’re ‘just part of being autistic’, and assuming that if you can ‘get rid’ of the autism somehow (newsflash: you can’t), they’ll just magically disappear, is not helping us at all.