Monday, 9 October 2017

Autistics And Self-Loathing

 Something that’s not really talked about much, apart from the occasional rant, is the self-loathing many autistics feel. I’ve experienced episodes of it myself, and have sometimes seen it in others. We can be tripped up by it, cast into shame, self-hatred and low self-esteem, no matter how much we might believe in autistic pride and all the rest of it. And of course, those who haven’t been exposed to that, are likely even more prone to it.

I want to examine the likely sources of this self-loathing. They seem to me to fall into three categories.

1) The world’s view of us. 

The public picture of autism is an ugly one. The ugliness is there in almost every news item about autism, where announcers talk about our very existence with solemn frowns, discuss worriedly how our numbers are increasing, and then smile perkily when talking about a ‘possible cure’, or gush over yet another piece of inspiration porn.

It’s in how the most frequently projected image is that of young, non-oral-speaking and almost feral boys, who spend their time having constant meltdowns. And who will never progress beyond that, it is implied or even stated outright, without a ton of ‘therapy’. 

It’s also in the next most common image of us, as Asperger’s type teenage boys with fantastic computer skills but zero social skills, with no empathy or emotions, and who border on psychopaths – think of those news items claiming this or that mass shooter was Asperger’s.

It’s in the frequent news items about possible causes of autism, each one seeming more wild and ludicrous than the previous. Not to mention the even more wild and ludicrous potential ‘cures’ for it. As though we are so terrible, anything at all must be considered to ‘fix’ us. Even things that would be considered abusive done to anyone else.

It’s in the almost always negative language used about us. Words like disease, epidemic, brain damaged, disorder, puzzle, problem, burden, cure, treatment, therapy - the list goes on and on – and in all the solemn pronouncements of ‘experts’ and pundits on What To Do About Us. 

The underlying message we hear? “The world hates us, and wants to be rid of us.”

2) People’s treatment of us.

The way people treat us on an individual basis is often ugly too. As children, we can be dragged from one doctor to another, one ‘expert’ to another, put through all sorts of tests, and subject to all sorts of ‘therapies’ and ‘treatments’, designed to make us at least pass for normal, whether we have a formal diagnosis or not. 

Or schools single us out for various behaviour ‘corrections’, or demeaning segregation from others, or we get bullied by other students, and left unprotected or even picked on by teachers. We flounder without help, or get the wrong sort of help that actually makes things worse.

As adults, we suffer frequent criticism, hostility, derision, ridicule, ostracism and rejection. We are bullied at work, in the street or even in our own homes. We’re put down, insulted, pushed around, laughed at, or even beaten up. Our supposed loved ones or even paid caregivers can manipulate us, exploit us, and sometimes abuse us also. This abuse can be physical, sexual, verbal and emotional.

Even in what seem like ‘good’ relationships, we can be subject to a severe lack of understanding, emotional expectations we fail to reach because we don’t even know they exist, silent demands we can’t figure out let alone fulfil, and criticism of our ‘bad’ behaviour.

The underlying message we hear? “They hate me for being autistic/weird/different”.

3) Our own experiences

There are two parts to this. 

       a) The first is when we make a mess of things in front of other people. If you’re autistic, you know what I’m talking about here. The all-too-public meltdowns, or the embarrassing shutdowns at totally the wrong moments. The times we literally fall flat on our faces or break something important. The times we turn up late, or disorganised, or in a total fluster. The times we inadvertently hurt someone we actually care about. The times we get worked up about something, and are told we’re ‘over-reacting’, or ‘making a fuss about nothing’, and ‘need to get a grip’ on ourselves. The social blunders and the awful silence that follows them, the blurts and the clamming up, the muddles and the messes, the times we just end up feeling like a total idiot.

       b) The second part is more private, but perhaps even more potent. It’s the times we come home from struggling through a day at work or school, keeping up face till we get home and can basically crawl into our holes to recover, till we have to get up and do the same thing all over again. The times we get invited to some social event, and know that we just can’t do it, and the resulting feelings of inadequacy. The seeing anyone else do anything we’d love to be able to do, but just can’t. 

It’s the crying all night, or rocking till the wee small hours. The mess our homes get into, even if no-one else sees them, and the realising that we don’t have the slightest idea how to clean them up. Or the moments we realise we’ve stayed up till three a.m. AGAIN, and we have to go to work or school tomorrow. Or our sleeping in, and then being embarrassed because someone might come to the door while we’re still in our pyjamas at midday. Even if no-one does.

Then there’s the moments of overwhelming empathy, where we want to cry for the whole world and the mess it’s in, and then feel stupid for ‘feeling so much’. Or how stupid we feel when we realise the significance of something said to us maybe years ago, or how we were fooled by someone or something way back when. It’s also the times we go off on our own mental ‘trip’ of one kind or another, getting all worked up, only to hear or see something that makes us realise we’ve got it all wrong, and makes us feel like fools. Even if no-one knows we did.

Or the self-flagellation and feelings of shame about even feeling shame, because we’re supposed to be able to ‘pull ourselves together’ – a sort of double whammy. 

The underlying message we give ourselves? “I’m so stupid/weak/useless/pathetic/not good enough.” Or something similar.

All of these can become sticks to beat ourselves with. And no matter how much we believe in autistic rights, autistic pride, and taking an ‘autism-positive’ stance, this self-loathing can still creep up on us and whack us from behind, when we least expect it.

Now, I don’t have any magic cure for any of this. But I do know that, far from being a reason to stop advocating for change, it actually makes that change even more imperative. We need to change the public perception of autism, change the way autistics are treated, and create an atmosphere of support and understanding for ALL autistics - whatever their age, whatever their so-called ‘functioning’, whatever their needs, ambitions, etc. 

Because only then, do we have a chance at being freed from this, and attaining a permanent state of self-respect.

(Note: updated 15/10/2017, to include the last two sentences in the paragraph that begins "Then there’s the moments of overwhelming empathy...")

Thursday, 5 October 2017

Something I hope will be helpful for teachers (and parents) of autistic kids


I wrote this guide a while back, for an autistic group, it's recently occurred to me that many others might find it helpful. Feel free to print it out and/or share it online (with acknowledgements and/or a link to here please!) wherever you think it might be useful.

1) Don’t expect us to be Neurotypical, or ‘normal’. Autism is fixed at the genetic and neurological level, we can no more change it than we can fly. Pressure to be ‘normal’, even if superficially successful, only causes us stress.

2) Presume intelligence. Difficulties with social interaction, verbalisation, auditory processing, information processing and sensory overloads can sometimes lead others to think we are ‘stupid’. We aren’t.

3) Consider our sensory needs. Most of us have very acute senses, meaning things like fluorescent lights, glare, strong smells, and noisy classrooms can cause us huge stress, hindering learning and possibly even leading to meltdowns. Even small accommodations, such as allowing us to wear caps and sunglasses inside, can help.

4) Don’t force eye contact. In autistics, lack of eye contact is not a sign of dishonesty. Many of us simply find eye contact painful, invasive or simply irrelevant. Also some find it difficult to look at someone and listen to them at the same time.

5) Accept that our body language and emotions are different. Many of our emotions don’t seem to ‘reach the surface’ very well, and when they do, are not likely to be the ones considered appropriate or correct, or correctly expressed. This doesn’t mean we don’t have any feelings, simply that we have different ones.

6) Accept that we don’t mean to be rude. We lack any instinctive understanding of social rules, and so inadvertently trespass them. If we are disruptive, it’s best to quietly take us aside, and tell us the rules explicitly. It’s also good to tell us when we do something right, so we can add it to our social ‘repertoire’.

7) Keep change and disruption to schedules to a minimum. We don’t cope well with sudden changes and lots of disruptions. Give us as much advance notice as possible of changes, including transitions from one lesson activity to another.

8) Isolate our meltdowns. Meltdowns are NOT tantrums, but a sign that we are stressed to the point of overload. It’s best to get us as fast as possible to a quiet, isolated, dimly-lit space – and leave us there till we calm down. DO NOT TALK to us during or just after the meltdown, it will just make things worse.

9) Avoid slang, or explain it. We are very literal thinkers, and if we don’t know expressions, can be confused by them. If you tell us to ‘hop to it’, we probably will! This is sometimes assumed to be ‘cheeky’ behaviour. It isn’t.

10) Focus on our strengths, not our weaknesses. We may be lacking in social skills, but are often very good at other things (and no, it’s not always computers!). Our ‘special interests’ can often be used to aid and focus learning. Moreover, a positive attitude on the behalf of the teacher can reduce the chances of us being bullied.

by Penni Winter