Sunday, 10 February 2019

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.

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