Monday, 18 February 2019

If We Really Were 'All A Little Bit Autistic'.

I’ve always been really bugged by that thing where we autistics try to share what life on the spectrum is like, and the reaction of NTs is 'well, we're all a little bit autistic aren’t we'. Firstly, because it denies and diminishes our very real difficulties. And secondly, because it’s simply not true. If your naturally white skin is deeply tanned from exposure to the sun, that doesn’t mean you’re ‘a little bit black’, and if you tried to claim so, it would be recognised as nonsense. Yet people insist on equating their occasional moments of social awkwardness or whatever, with actually being autistic.

So I’ve long wondered what the world would look like, if we really were ‘all a little bit autistic’. About a year ago, I asked around in several autistic groups, what their vision would be, of a world where everyone was autistic, with the idea of writing a post on it. Unfortunately, I went through a period of ill-health shortly after, and then got immersed in other projects, and never got round to writing it. But recently I revisited those conversations, which I’d saved in a file, and realised there were some good ideas in it. Plus, it’s still a Thing, where NTs do that. It hasn’t gone away, and I want to supply people with some ammunition to counter it.

So here’s the suggestions people made, divided into several categories, for simplicity’s sake. It turned out to be a long list! I want to thank all those who contributed. I’ve edited some of them slightly, made clear where people offered alternative ideas, and anonymised them all to protect peoples’ privacy.

Foods would be automatically separated.
No forcing kids to finish their dinner.
No Styrofoam… Not just Styrofoam - polystyrene in general.
Weighted blankets would be sold as the norm rather than as an (often expensive) specialist item.
No unwanted touching.
No-one, on complaining about smells, would ever again be told "stop your whining, it's not that bad."
‘Smell pollution’ would be recognised as a thing. It would be considered a social offense to overload with perfume, for example.
[Or] No one would wear perfume or scented deodorant.
[Or] Perfume would only be smellable when you actually sniff it.
No-one would have invented fluorescent lights!
It would be totally acceptable to wear sunglasses year-round and indoors and no one would make jokes about someone giving you a black eye or suspect you of being a shoplifter.
Lighting, music etc would all be customisable to the individual.
Sunglasses would always be available at the dentist or any medical exam with bright lights.
Waiting rooms would be lit dimly.
[Or] Bright lighting would be non-existent.                       
They would come up with tech that doesn't buzz just below the range of hearing.
All motors and buzzing noises in the house and office gone.
Central heating would be [truly] silent.
There wouldn't be a need for earplugs.
Normal earmuffs would have an option to be ear defenders.
No-one would play their music on their phones, in the street. Ever.
Applause would not be a goddamn thing.
Wild or screaming children in small public spaces where waiting in line is required, like post offices, waiting rooms, etc [would be removed].
[Or] A quiet and softly lit room with individual cubicles in every building open to the public. If there is a line that you have to wait in, you could take a number and wait in the quiet room.
Supermarkets and shopping centres would have noise baffling technology. No more echoes.
And the lighting in the supermarkets would be different and there'd be no irritating music or loud tannoys.
There would be no muzak in shops. Ever.
Everyone would get private soundproof cubicles with soft lighting.
Clothing [wouldn’t be like] sandpaper, oddly put together, things glued and dangling, embroidery overloaded, etc.
Clothing labels would be easily removeable from clothes.
[Or -] No tags on clothes ever.
Socks wouldn’t have seams!
They would ban that weird plastic elastic stuff they put in seams in ready-to-wear clothes. Digs in and itches and scratches like mad!
All swimming pools would have the non-chlorine cleaning system. No kid at school would be forced to go to the public swimming pool.
Children's toys would have no battery-operated lights and noise. And the toys would not be all tied in the boxes so much my son gets so upset trying to get the toy out of the box.

There would be no spontaneous social events.
Small talk would not exist.
No one would expect eye contact.
People wouldn't shake hands to greet each other.
People [would say] "hello" as a greeting instead of "how are you". They would only say the latter if they really mean it.
The phrase would you like to go for a drink would mean drinks, and there'd be a different one for 'I've assessed you as a life/night partner, shall we?'
No 'social niceties' - people would just say it how it is & not dance around the truth.
People wouldn't lie so much.
Everyone would trust one another and take people at their word.
People would actually say what they mean and then give you a chance to do it.
People wouldn't assume intent from tone and body language and you could safely take things at face value without the danger of realising, years later, that you were being mocked.
[People would recognise that] stating facts is not being rude.
No one would ask, if they looked good in an outfit, then be offended if you said no.... Or if you liked their new hair etc.
People would not talk to you about things that they know you cannot relate to… then be upset that you told them the solution options. Or finally said something honest that may be considered harsh.
The concept of "reading between the lines" [would not exist]. Along with there not being a singular "right way" to do things.
When something really cool happens no one would care if someone gets very excited and starts flapping or waving their arms. In fact, that's what most ppl would be doing.
No stims would be mocked.
Phone ‘seconds’ would be available to make important calls with your voice and manner.
There would be no socializing over meals. My food [gets] cold.
One sided restaurant tables, to discourage eye contact.
[There would be a] 'quiet please' side of the restaurant.
"I need some time alone" would be totally respected.
Sporting events wouldn't be a thing.
Sales people would be very clear what they were trying to sell you.
No criticism of special or unique interests.
No-one would be made to feel that they were less because of functioning labels, no invading personal space, sarcasm would be always marked with /s so people can tell, it would basically be utopia in an all autistic world for me.

Job interviews wouldn't ask stupid gotcha questions.
Apprenticeships for teens so you got to learn your passion under an expert without having to go through an interview.
No open plan office/classroom designs.
All workplaces would offer quiet rooms for random breaks whenever needed.
Lunch/breaks would not be mandated at a certain time - if you were on a roll they’d leave you be.
Work from home would be available in all jobs where practicable.
Meltdown leave would be available.
Instructions would all be written and verbal. With no more than 2-3 at a time.
No-one would consider you anti-social at work for sitting at your desk with ear buds in instead of making chit chat about last night's episode of whatever.
DC transformers wouldn't whistle, no-one in the factory could bear it.
We'd probably all be happier in our jobs as we'd have created jobs that focus on our strengths and things we like doing.
I could have a working environment where it was perfectly okay for me to have a balance between work and social skills... In fact, I could easily get a job, for that matter.

School bells would gently chime, not ring shrilly.
Subjects at school can go all day/week not 6-8 subjects/day, different classes, teacher, room, students...
Schools would not change daily routines or specific plans so often or without good reason and would give a lot more notice.
Education would allow for different rates of progress, would encourage people (the young and adults) to learn what they were passionate about and help find ways to build on that passion.
Also, education would be from home if desired.
Classes would encourage people to take breaks with a quiet room available at all times.
There would be no more Group Work in schools except where the task *absolutely requires* a group of people to complete it.
There'd be playgrounds with more tactile play for the kids.
No compulsory team sport classes for kids.
Flexible unisex natural fibre uniforms.
Nature designed integral to classroom, outdoor classrooms.
Low noise classrooms.
No homework.
The [education authorities] would not think mainstream is inclusive and other professionals would not blame parents and also not ignore them over school. Professionals would be agreeing with parents and there would be a partnership. There would be less mental health issues based around autism and related conditions.

The television programming would be radically different. More documentaries, intelligent written scripts, less celebrity driven reality shows. No ads, marketing is such shameless fake manipulation.
Maybe even channels dedicated to different topics, like there would be a train one, a biology one, an astronomy one, a history one....
An Architectural one, actual engineering details, with professional experience not the glut of terrible building makeovers, a photography channel, a drawing channel…
Theme park rides system would be different... You'd have to pre-book your time slot for each ride... No queues and you can book up to 3 goes per ride (so it works a bit like fast track) only fair to all.
Ponderer societies, chess clubs, salons for philosophical debates would be the norm not fringe.

Social justice would be universal.
Places like Alton Towers or Drayton Manor wouldn't exist.
We [would] just accept that religious beliefs [etc] are personal and as individual as being autistic is.
No war, no famine and no poverty.
Nobody would be at war. We would work together to build a unified, accepting world, for the purposes of bettering the lives of every person on earth. We are the innovators that these NTs take for granted.
The planet would have guardians and caretakers, lots of volunteers...

All drivers would use signals appropriately, travel within speed limit, and stop tailgating.
Buildings would be honest and have integrity of materials, not the faux finishes, opulent facades masking crappy design.
Houses would be soundproofed.
Baths would be bigger.
Bedrooms and private spaces would be bigger, and shared/living spaces smaller.
[Subway stations would not] be a huge challenge… [In an autistic world] these issues would be dealt with at source through design and construction.
Transport would be different, it would be larger and have enough room for everyone to have their own space.
Things would run on time, updated info would be spot on and asap.
Supermarkets would have larger aisles so you don't have to go near people to go past them.
Products would [always] be displayed in the same place in supermarkets, [but] if moved instructions for where to find that item would be available.
Everything would be planned and thought out, in a particular routine. There would be no change  whatsoever.
[Or] THEY WOULDN'T CHANGE ANYTHING WITHOUT GOOD REASON and would give notice AND also carry on the original version.
Also, we probably would have conquered the rest of the galaxy by now.

There are probably other things you can think of to add to this list. I offer these as ‘food for thought’, as to how different the world would be, if we really were all ‘a little bit autistic’.

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.