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’.

Why I Empathise With The Deaf

As someone with both Chronic Fatigue Syndrome and Aspergers Syndrome, I empathise with all my fellow disabled. However I'm finding the group I empathise most with, next to my fellow aspies of course, are the deaf.

There are lots of reasons for this. They start with the personal, such as my having known a deaf woman for many decades through a family connection. I've also had a slight hearing loss since my 20s, and, like many on the spectrum, I almost certainly fit the criteria for Auditory Processing Disorder as well. People's words frequently come across as sort of 'mushed together', and I have to unscramble or 'decode' them. It's hardest when speaking on the phone, and I've realised recently that face-to-face I do quite a bit of lip-reading – and so know how difficult-to-impossible that can often be, eg if someone has an accent, or a moustache over their lip, or turns their head away or mumbles.

But beyond these personal reasons, I find many similarities between the autistic and the deaf.

We've both have had our conditions 'medicalised', seen as pathological. We've been told that the Best Thing that can happen for us is some sort of 'cure', whether it be cochlear implants, learning to imitate speech and lip-read, or punishing rounds of 'therapy'.

We've both been taught we are 'lesser than' or inferior. Our natural states have been cast as 'lacking' or 'deficient' in some way, and we’ve been treated as though we’re somehow less than other human beings. We've been taught that to be hearing/NT is better, and that They Know Better Than Us, about all sorts of things, most especially how we should live our lives.

We've both been seen as 'stupid'. We've been called 'retards' or 'dumb', held back in education or given a lesser education, assumed to be non-intelligent if non-speaking, and often had it assumed, or even specifically been told or taught, that we ‘can’t do’ a lot of things, and so generally not given the same chances in life.

We've both been kept ignorant. Both groups have often not been informed of a lot of basic stuff about the world. Neither group 'just pick it up' - the deaf because they don't hear it, autistic because they don't 'see' it. If the deaf don't learn and communicate in sign language with their parents as children, and the autistics are undiagnosed, then the likelihood of this is increased. Both groups suffer lifelong consequences from this.

We’ve both have problems with communication. Sign language was suppressed for many years, and even now, few people outside the deaf community and their immediate families and teachers know sign language, and interpreters are still thin on the ground. Non-verbal autistics are still too often seen as ‘not having anything to communicate’ - even if they have communication devices, they’re still sometimes not listened to. Even if an autistic is verbal, they can also have difficulty communicating their needs to others.

We've both experienced forced normalisation. There’s been so much pressure on us to be or at least pretend to be ‘normal’, whether it be the tyranny of oralism for the deaf, or 'indistinguishability from their peers' for us. The over-riding message has been that ‘not normal’ is bad, that we must not sign, or flap, or show any obvious sign of our ‘defectiveness’, that we should aspire to be normal, or to imitate it as closely as we manage, no matter what the personal cost to us.

We've both have been punished for doing what comes naturally. This is of course sign language for the deaf, and stimming and other autistic behaviours for us. This follows on from that forced normalisation – all our natural behaviours and means of communication have been suppressed “for our own good”.

We've both been victims of various kinds of maltreatment. We've been beaten up, bullied, abused, yelled at, laughed at, scorned and jeered at, rejected, ignored, etc, etc, ad nauseum. We've been excluded from professions and jobs because other people tell us we aren't capable of them, we've been discriminated against, jailed, put in mental institutions, or even killed. The list is a long one, and it ain’t over yet.

We’re both invisible to others. We’ve both been marginalized. As far as the rest of the world is concerned, deaf or autistic viewpoints are so rarely seen or heard, it’s like we might as well not exist, most of the time. And so our needs are rarely if ever taken into account when facilities are designed or events staged. A recent example is the lack of captioning for Rugby World Cup events on New Zealand TV. It’s like it never occurred to the Powers That Be that the deaf might be interested in watching rugby.

We’ve both had to find our own ways of doing things. For both groups, a lot of the aids we need are visual. Charts, lists, maps, social stories, teletext captioning, cellphone texting, AAC devices, computers, the Internet/email, etc, are of vital importance to us, yet often we’ve had to find, invent or insist on them ourselves. Others have been so insistent on normalising us that they’ve ignored or denied us what we really need.

We've both overcome all the above, to form communities of our own. We’ve rejected so much of all of this BS, to find each other, support each other, and form our own communities, where we can communicate, share, and socialise in our own ways, on our own terms. There is often a sense of relief and belonging somewhere, for the first time, when we enter these communities, plus a shedding of a lot of old worn-out ideas about who and what we are.

Things thankfully have changed and shifted for the deaf in recent decades, though I don’t doubt many of them would still say there’s a long way to go. We autistics are still stuck in the past in this regard, somewhat behind the deaf, a lot of the worst things are still happening for and to us. It fills me with frustration, but I remain hopeful that we will find ways to effect change. It’s certainly about time. Both groups deserve so much better than this.

The People of the Eye

Lately I’ve been reading a very interesting book called ‘People Of The Eye’[1], a collection of life-stories by New Zealand deaf people.

Due to a family connection, I’ve known a deaf woman since I was in my teens and she was a child. Communication with her and her younger sister (also deaf, who tragically died in her twenties), though limited to interpretation through their mother, gestures, lip-reading and the few signs I know, soon showed me that ‘deaf’ did not mean ‘dumb’. They were lively, intelligent girls, with a great sense of humour. On one occasion, for instance, the younger girl asked me through her mother what I’d had for dinner. I couldn’t remember the sign for chicken, so instead bent my arms and flapped them like chicken ‘wings’. They almost rolled around the floor laughing! I also knew, through overhearing conversations between our mothers over the years, some of the deaf ‘issues’ of the day.

However it wasn’t till reading this book that I began to understand the depth of the problems deaf people in NZ (and elsewhere) have faced over the past century, and continue to face.

Briefly, the story is this. In 1880, the International Congress on Education of the Deaf passed a resolution to stop using signs to teach Deaf students. Being deaf was considered a ‘deficient’ or pathological state, and it was decided it was best for deaf children to learn to lip-read and talk, ie make them as ‘normal’ as possible. Speech, they declared, was vastly ‘superior’ to signs, and therefore the latter must be eliminated.

As the first School for the Deaf in NZ didn’t open till that same year, this approach, known as ‘oralism’, was used from the start. Older generations of NZ deaf were punished for using signs, and made to feel ashamed of it. Nonetheless, those children who did know some signs taught each other when teachers weren’t looking. As you might expect, the most profoundly deaf never learnt to speak well (my family friend included) as they simply can’t hear what they are supposed to be reproducing. Eventually as adults they began to form their own Deaf communities, where signing was the main method of communication, as this was the one most natural to them.

The deaf being considered to be ‘incapable’ of any work other than the most menial, vocational education was the focus in their schools, and this, together with the huge amount of time spent on oral speech training, meant the standard of education suffered. Many older Deaf people have been limited in their academic abilities and achievements as a result of this, and it’s only in recent decades that some younger Deaf people have made it to university. (I speak here of the NZ situation of course, this book makes it plain that this doesn’t apply in other countries, especially the US, and many NZ Deaf in this book express amazement and envy of the support American Deaf enjoy, and their educational achievements.) From the 1960s on, many deaf children began to be mainstreamed in regular schools, which was done with good intentions, but as few teachers had any idea how to support their deaf students (eg by simply remembering to talk facing them), and they had no interpreters, their educational achievements remained, not surprisingly, generally low.

It wasn’t till 1979 that a form of signing was allowed in deaf schools – and even then, it was not NZSL, but a method known as ‘Signed English’ or ‘Total Communication’, which corresponds ‘word’ for ‘word’ with spoken English. This method however is not natural to the Deaf, true sign language being vastly different to spoken English. NZSL interpreters didn’t begin to be trained till 1985, and the number of them is probably still small. NZSL was finally allowed in Deaf classrooms in 1993, the first Deaf teacher of the Deaf qualifying in 1992. Things are slowly changing, but many Deaf people still feel far more comfortable with other Deaf, simply because communication is so much easier. They have their own clubs, social events, sports, and even Deaf Games; in short their own culture and community, and most definitely do not regard themselves as ‘disabled’ or ‘handicapped’. The Deaf people in this book express pride in their way of being, see nothing ‘wrong’ with being Deaf, and were not bothered at all when some of their children turned out to be Deaf. They are proud, self-reliant, and amazingly strong, worthy of admiration and respect.

The ‘pathologising’ of one’s condition, one’s difference seen as ‘inferiority’, attempts at a forced ‘normalisation’ or at least outward elimination of this ‘inferiority’, restriction of hand movements, being educated in a way that is inharmonious or injurious, being treated as though one is ‘stupid’, insistence on communication by methods foreign and unnatural to one’s being, and which moreover in most cases can never be fully learnt, the slow forming of communities ‘away from normal eyes’, the equally slow formation of culture and pride in one’s own natural way of being….

Does any of this sound familiar to you spectrumites?!!?

---

[1] Rachel McKee, People of the Eye – Stories from the Deaf World, 2001, Bridget Williams Books, Wellington, NZ.

A Bit of a Grump

Back again after the Xmas Break, and unfortunately starting the New Year with a grump. And it’s not related to anything about autism this time, for once. Except that perhaps I’m being a typically pedantic aspie, grouching about other people’s (linguistic) imperfections…

Most particularly, those to do with basic writing skills. I don’t know if something similar happened with schooling in other countries (though I suspect it did), but between my own school years (60s and early 70s) and my daughter’s (80s and early 90s), something strange happened in NZ education. My generation had the basics of spelling, grammar, punctuation, etc drilled into us. It didn’t seem to harm us any, and did give us a good grounding in language skills. It didn’t seem to harm our creativity either - many of my generation, and previous ones, went on to become some of NZ’s finest writers, poets, playwrights, artists, musicians, filmmakers and so on. Okay, maybe some of it was a little boring, or punitively taught, but it seems like when They (that mysterious They, the Powers That Be Who Decide These Things) decided to ditch those ways of teaching, it seems they threw the baby out with the bathwater, and ditched intensive teaching of language skills too.

I first became aware of this when my daughter was almost ten, and I began home schooling her. Imagine my shock when I discovered that despite five years of education at a supposedly good school she couldn’t really spell, her handwriting was atrocious, she had only a hazy idea of punctuation, and wasn’t too sure what distinguished a noun from a verb, let alone any other parts of speech. It’s not that NZ primary schools don’t teach these things, it’s that they don’t place a lot of emphasis on them, they’re sort of thrown in incidentally, now and again, and the children are somehow expected to ‘just pick them up’.

For instance, when I talked with the principal of her primary school, prior to removing her, I had to lay out what I intended to teach her. Regarding language skills, he didn’t seem to think it important that I teach her about all the above things, almost pooh-poohing them, rather he insisted that she be taught to ‘write creatively’, to ‘express herself’ in writing. NZ textbooks, I also found, were the same. It was so marked that I ended up using a British set of language workbooks, which systematically taught these basics, in what my daughter found a fun and interesting way. (And surely if the Poms can do it, so can we…) (And that's what schools are supposed to do, teach kids, right? ...Right?)

It’s not that I don’t think learning to express yourself on paper is important, or that I would want to see our schools return to the old days and old methods. But you can’t build a house without a good foundation, and you can’t be really good at expressing yourself if you can’t write legibly, or coherently, or organise your ideas into decent sentences. And while perhaps some can ‘just pick up’ these skills, others can’t, and need more intensive training in them. The results of that lack of proper training is being seen at NZ universities, many of which now have instituted remedial programs to teach those basics. And this is for the ‘best’ students, the ones who supposedly are our well-educated highest achievers!!

I’ve since worked in a NZ school, and seen for myself how little focus there is on grammar, punctuation, etc. I’ve seen work produced at higher secondary levels too, for exams, and in many cases it’s pretty bad. I don’t blame the secondary schools – these things should be being taught at primary level, and they simply aren’t. And for years I’ve seen it almost daily, in supermarkets and shop signs and everywhere, growing worse year by year it seems, a whole heap of muddled errors of spelling and grammar and punctuation that renders the results almost incoherent, or at least forcing me to stop and think about what the writer means. (And some of course are just laughable, especially to someone like me with a very literal aspie brain.)

So let’s get a few things straight, most especially to do with apostrophes, as that seems to be what confuses people the most.

1) A simple plural doesn’t need an apostrophe. ‘Tomatoes’, when it’s simply the name of a bunch of the fruit, doesn’t require one. (I wince every time I see “tomatoe’s” or even “tomato’s” for sale.)

2) The possessive form of any word does have one, eg if you’re talking about “the tomato’s smell and shape”.

3) “It’s” requires an apostrophe only when it’s short for “it is” or “it has” – ie, it stands in for the missing letters, as in “it’s been raining”, or “it’s raining outside”.

4) If this isn’t the case – ie if “its” is simply about ‘owning’ something – eg “the cat and its collar” – then it doesn’t need one.

5) If you’re not sure, try replacing “its” with “it is” or “it has”. If the sentence makes sense, then you need to put an apostrophe in. If it doesn’t, you don’t.

Ok?

Right. Grump over. For now.