Showing posts with label autism as socially constructed disability. Show all posts
Showing posts with label autism as socially constructed disability. Show all posts

Friday, 25 March 2022

Two Big Mistakes People Make About Autistics

There are two Big Mistakes that people make when interacting with autistics. Firstly, they presume we’re the same as everyone else. Secondly, they assume we’re NOT the same as everyone else.

If this sounds contradictory, let me elaborate on what I mean.

1) If people presume we’re the same as everyone else (this applies whether we have a diagnosis or not), it means that our actions are judged in that light. So if we do X behaviour, it’s presumed it’s done for the same reason that non-autistics would do it for.

The classic example is the autistic child whose teacher makes a mistake, and the child points this out – loudly, and in front of the rest of the class. The teacher reacts angrily, assuming that this is because the child is being deliberately cheeky, disrespectful, rude, or challenging their authority. The child, however, is far more likely to be simply distressed and/or confused by the teacher making a mistake, because errors can cause us actual pain. And as we’re less sensitive to social hierarchies, the student will likely just blurt out the correction. They will then be even more distressed by the teacher’s response, and possibly have a meltdown, especially if they’ve already had a hard day.

Even as an adult, working as a teacher aide in a classroom, I found myself in this situation. A teacher taught a grammar rule wrong, and it took all my self-control not to correct them. And if it was hard for me, imagine how hard it is for autistic kids not to say anything. A better outcome might be the teacher taking the child aside later, and asking them to tell them in private when they’ve made a mistake, rather than blurting it out in front of everyone. If the child knows that the teacher is sympathetic, they might be able to restrain themselves better.

Another scenario, which I’ve heard frequently from autistic adults, is an autistic employee asking an employer, manager or co-worker lots of questions about how to do a job. They then think we are challenging their authority, ‘acting stupid’ to bug them, and so on. Cue hostile response, and sometimes our being fired, demoted, punished or socially isolated. But we often do need way more guidance than most NTs would need, either because of anxiety issues or because we simply don’t know many things neurotypicals take for granted. In this situation, the probable best thing for the employer to do is to appoint someone helpful to act as a mentor, at least until we get the hang of the job, which we will probably then understand better than the other employees! If the job changes in any way, however, we will probably need further guidance.

2) People can also assume we are ‘not like others’, believing that everything an autistic does is BECAUSE they’re autistic. Implicit in this, and the tragedy at the core of this assumption, is the mistaken belief that we ‘don’t feel things like other people do’.

The classic example here is meltdowns. If it’s simply assumed that it’s a ‘symptom’ of our autism, ie that autistics are violent, disruptive, crying helplessly etc because we’re autistic, and for no other reason, then no-one will bother to dig deeper for the real causes. And thus we will likely have more meltdowns, and the destructive cycle will continue, until eventually we are deemed ‘intractable’ or ‘unreachable’, with all the horrible things that tend to follow on from that.

Whereas if people stop and think ‘well, if a non-autistic person was doing this behaviour, what reasons might they have?’, then they might occur to them that ‘oh! A non-autistic would be doing it because of stress!’ And then they might recognise that actually, we too are responding to various stresses. They might even start to realise the role that sensory overload plays in causing meltdowns. And they might start to change the classroom, office space, home environment, etc, as well as their (and others’) behaviour towards the autistic.

Because we do have feelings and emotions, oh how we do. We may not show them in the same way, or at the ‘right’ time, and sometimes we don’t even register them ourselves until later, if at all, because many of us are alexithymic as well as being autistic. But we do have them nonetheless. And to assume we don’t is to create a situation where our very real distress is ignored or, worse, punished. I can’t begin to describe the depths of the trauma all this causes. Because if it’s assumed that someone doesn’t have feelings, then it’s far more likely that they will be mistreated, abused, even sometimes killed, because it ‘doesn’t matter’ what happens to them.

The upshot of these two Big Mistakes is that in the first instance, the autistic is punished for being a ‘bad’ human. And in the second, we’re considered to not be human at all – and punished for that too, with the support we need denied us. Either way, our reality is denied, ignored or twisted and used against us. Both cause massive amounts of distress, confusion and pain to autistics. We end up feeling like no-one likes us, no-one understands us and no-one truly cares. We can become perpetually anxious, depressed, angry, or even suicidal – if the world is that unfriendly, why would we want to stay in it? Even if we don’t end it all, our lives tend to go on a downward spiral. It’s a harsh world for autistics in which these two mistakes rule people’s attitudes and behaviour towards us.

The curious thing is that, often, people make the same mistakes with the same autistic individual/s, at the same time. Our meltdowns, for instance, can be seen as ‘bad behaviour’, but also simultaneously as ‘well you know, they’re autistic…’, with a dismissive shrug. All the while, our real problems aren’t being looked at, and will sadly continue.

Sometimes these two mistakes combine in a particularly nasty way. In this approach, we’re seen as ‘NTs with holes’, ie that we are like others, but with lacks or deficiencies, which need to be corrected, the ‘holes filled in’. I call this the ‘empty autism theory’. It’s assumed that if we have the right therapy, we will become ‘just like normal’. But the ‘no feelings’ assumption plays its part here too – when we react badly to that therapy, eg if it’s boring, harsh or manipulative, causes us pain or upset, or involves long hours that other kids aren’t subjected to, our very real reactions to it are ignored, because they ‘aren’t real’, or ‘don’t count’. ABA is the prime example of this, but things like social skills classes, forcing us to forsake our special interests or to make eye contact can also fall into this category.

None of these approaches are helpful. We are not what people think we are, but we are definitely human. It’s just that we human differently. We desperately need and want you to learn our true reality, not operate on these wrong assumptions about us. These Big Mistakes are hurting us, hurting us badly, and it needs to stop.

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.

Sensory
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.

Social
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.

Workplace
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.

Education
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.

Entertainment
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.

Society
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...

Other
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, 3 February 2019

The Empty Autism Theory


There’s an idea I’ve been tossing around in my head for some while, which I’ve been calling ‘The Empty Autism Theory’.

It’s about how many neurotypicals view autistics – ie, that they see us as somehow ‘empty’ of all the things that NTs have, whether that be intelligence, thoughts, feelings and emotions, empathy, social sensitivity, a sense of humour, communications worth listening to, the capacity to feel pain or to love our fellow human beings, or even just basic humanity.

So in their eyes, we’re devoid of anything worthwhile, or if we do have anything inside us, it’s a sort of echoing chaos of misery, from which NTs need to ‘rescue’ us. So their job, as they see it, is to ‘fill us up’, to ‘give’ us these things, after which we will be ‘fixed’, and ‘just like normal people’. It isn’t always explicitly framed or stated that way, but the underlying message is pretty clear.

I see it in many areas, in the attitudes of schools, government programs, in books and movies and TV programs about autism, and hence also in the public image of autism. It’s in all the assumptions made about us, eg that we don’t look people in the eyes because we ‘have no interest’ in other people, or that our meltdowns are somehow ‘just random’. It’s in how they don’t bother asking us what we want or need, even if we can talk, because they’ve already decided that we don’t have anything worth listening to, we’re simply to be filled up with whatever they’ve decided we lack.

It’s also evident in the professional language and research, where we’re described as ‘deficient’ in this, or ‘lacking’ in that. We don’t have ‘theory of mind’, or we display ‘weak central coherence’, and so on. The diagnostic criteria focuses almost exclusively on our lacks and deficiencies and abnormalities. It’s even in areas you wouldn’t expect, for instance the infamous ‘research’ project which deemed autistics as ‘lacking in social reputation management’, rather than simply as more honest than their NT counterparts. 

Moreover, this view of autism has been there from the start. Kanner first described us in terms of ‘disturbances of affective contact’, ie we ‘didn’t care’ about those around us. He was the first to suggest the ‘refrigerator mom’ theory of autism which others like Bruno Bettleheim later took up. Even Asperger described us in terms of our ‘deficiencies’ in social/communication skills. 

And then there was Lovaas’ infamous characterisation of us as ‘not fully human’, when he said that “you start pretty much from scratch… with an autistic child. You have a person in the physical sense… but they are not people in the psychological sense… You have the raw materials, but you have to build the person.” Thus ABA from the start was based on the ‘empty autism’ idea – push the autism out of the kid by filling them up with NT-type ‘skills’, and hey presto! No more autism!

It’s evident too in how, whenever autistics challenge ‘warrior’ parents of autistic kids about how they regard and treat their children, we get shut down and attacked – the whole ‘you’re-not-like-my-kid’ and ‘you’re-too-high-functioning-to-know-what-real-autism-is’ stuff is based on the idea that the ‘real’ autistics are somehow ‘different’ (read: empty/deficient) from those of us who can talk, or at least communicate online. Even at the same time as some of them are defending themselves by claiming we’re ‘lacking in theory of mind’, so ‘unable to understand’ where these ‘poor parents’ are coming from! At a very basic level, it’s a profound ‘othering’, a psychological theft of our humanity. 

It’s also evident in the presumption that we simply need to learn how to ‘behave like normal people’, and our problems will all be magically solved. So if we do a social skills course, and we still have problems, it must be because of some resistance or ‘deficiency’ on our part - because, after all, they’ve “done all they can for us”.

Now we know that we’re not empty. That in fact we’re full – full of sensory reactions and unruly emotions that demand our attention and sometimes interfere with our learning, wonder at the physical world around us (even if we’re not budding scientists or computer programmers), joy in our ‘special’ interests, a straightforward honesty, puzzlement at what seems like bizarre behaviours of other people, priorities that don’t include things like small talk, not to mention distress at the way we’re treated, whether or not we can vocalise it. And more. Much more. 

I don’t know what to call the opposite of this ‘empty autism’ theory though. I’m hesitant to label it ‘the fullness of autism’ theory – it’s not only that we’re ‘full’, it’s that we’re both complex and under stress. But I don’t want to call it ‘complex autism theory’ either – as this would undoubtedly be twisted and pathologized and used against us. So I’m not sure what to call it – once again, the language of NTs fails to adequately describe the autistic reality.

What I do know is that, once again, I’m forced into the realisation that nothing less than an entire reframing of the public understanding of autism and autistics is necessary. Only when it’s seen that we are not ‘empty’ of all the things that make people human, can real progress be made. Because as has recently been noted, the public image of autism is based on us in varying degrees of distress, and is thus distorted, the signs of our distress taken as symptoms of our autism, ie as givens with our ‘disorder’. And that stress can be traced back directly to the Empty Autism theory, and the resulting misunderstanding and pathologizing of autism and autistics.

And it’s time for all that to stop. Time for the empty autism theory to be laid to rest, and for our humanity to be seen and accepted, and for our part in the full range of human diversity to be embraced. Our very survival depends on it.