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In yet another train first for us, we managed to find a GWR Class 378 train. According to Wiki, The Class 387 Electrostar is an electric multiple unit (EMU) built by Bombardier Transportation.
It made us happy. And we watched some more at Ealing Broadway.
The GWR Twitter people were very helpful in trying to in down where/when the 378 trains might be running. (Paddington to Maidenhead is your best bet)
There’s a point in the life of most parents of special needs children today that someone sends them, or they come across, the “Welcome to Holland” poem/story, by Emily Perl Kingsley (a sesame street writer, and mother of a Down Syndrome person). It’s a poignant / twee analogy comparing welcoming a disabled little line to a trip to Holland where you were attempting to go to Italy (see end for the piece).
It often divides SEN parents from those who find it on point, to those who... don’t. And those who flip-flop between. (I don't have a strong view, although if you've come here for thoughts on difference, my recommended reading is Far from the Tree by Andrew Solomon)
I suppose we all have expectations for our children. Hopes and dreams. Great expectations, perhaps.
Then the little person comes along. Has not read any of the manuals. Life is reset.
At some point, I think I would have thought it unlikely I would see S on stage, performing actions somewhat enjoying himself. Shouting out some lines.
Yet, this week, that's what I did see.
There is a line of thought suggesting that grief can not be shared. It is too personal, too unique. Yet, the desire to share grief, the want to connect, the ability to be present for someone - that desire to share grief, that can be shared.
There is no universal play about autism, as an ASD person is too unique. Yet, there are plays about the human condition, and all ASD people are human.
Life swings backwards and forwards, circles back, jumps forward; jigeddy-jag.
I don't think I could have easily forseen S on that stage, the flows of life are too complex. I think that's a reason to be hopeful - the wished for happy endings that Annie Proulx speaks about - and a good thought to be thankful for.
Sheryl Sandberg on grief and gratitude. Anoushka on gratitude. Lessons autism has taught me.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Elegant, flowing, beautiful hands. Chatting with Jonathan Meth, I was struck by how eloquent his hands were.
Social decorum crimped me and I felt I couldn’t interject to say - wow your hands wonderfully mesmerize me. Social media strips decorum, so I can say that now.
My writing threads go back to when Jonathan ran writernet which harks back almost 20 years ago now. Now, I’m stepping back into a writing practice or perhaps a playwright as a multi-disciplinary arts-investing person, a some time mingler - which I’m told is a form of covening. It’s amazing to re-connect and hear how artists’ work have developed.
Jonathan has kept an international network of artists through Fence, which seems to me an evolution from the dramaturgical work of writernet (I will split the post and write about Fence in another section). He has also developed a practice in disability arts - and our shared interest in autism crosses over here. There’s a lot to Jonathan’s practice.
Across time and space, we end up on a warm New York autumn evening drinking a bar tender’s choice of drink, 10 over years since we last met.
The disability practice is described in this 2015 Guardian article and on his own site here. What I took away is that there is a strong disability arts practice in various countries, often forging on with limited support, but creating a long history or astonishing art. Three of them are partnered in Crossing the Line (not to be confused with the project that Gideon Lester and others are involved with): Crossing The Line (EU) is a project of the co-operative partnership of 3 European theatre companies: all leaders in the field of working with learning disabled artists. The partners are Moomsteatern in Malmo, Sweden; Compagnie de L’Oiseau Mouche in Roubaix, France and Mind The Gap in Bradford, UK. Jonathan is project dramaturg, and is hoping to expand the partnership to many more countries.
We also intersect on Ambitious about Autism. This is an ABA led group in the UK on ASD special education needs; but Ambitious acknowledges that the tent is larger than ABA and so pushes forward across a range of ASD advocacy; as child-centric and child-led practise informs much of good SEN (and typical) practice today, whatever techniques you find that work (and research is still relatively poor).
Drawing this part together, it was apparent to me that Jonathan speaks many languages. The language of art in its many dialects, the language of SEN, the language of policy makers and funders.
It dawned on me, I speak several of these languages too, and that we need more of us in today’s word. More than ever.
Jonathan spoke of Isaiah Berlin’s Fox (after Greek poet Archilochus) who ‘know many little things’. As Jonathan writes: “They react to challenge by drawing on a pattern of general, pragmatic understanding, often making mistakes but seldom committing themselves to a potentially catastrophic grand strategy.” As opposed to the hedgehog, which knows one big thing. It reminded me of this Nassim Taleb conversation with philosopher Constantine Sandis - Taleb argues a cousin piece of thinking:
“I do not consider myself a hedgehog, but a fox: I warn against focusing (‘anchoring’) on a single possible rare event. Rather, be prepared for the fact that the next large surprise, technological or historical, will not resemble what you have in mind (big surprises are what some people call ‘unknown unknowns’). In other words, learn to be abstract, and think in second order effects rather than being anecdotal – which I show to be against human nature. And crucially, rare events in Extremistan are more consequential by their very nature: the once-every-hundred-year flood is more damaging than the 10 year one, and less frequent.”
Being open minded, being open to possibilities when they happen, intertwining chance - taking those chances - those challenges are absorbing them to make you stronger (anti-fragile, even more than resilient)
Looping back to Spike, that chimes with some of what I hope for him, that we can expose him to enough small and varied challenges and opportunities that he find enough to think, and be, and to find purpose. It’s hard for Spike to do that within an institution. We will find a way.
This last few days in New York has felt a little like that - throwing out the the threads - listening - thinking - being - meeting: from the chance meetings (triggered by the Empty Space), the semi-chance meetings like Jonathan; the near misses (Gideon, I’m still hoping); the re-connections;
Mixed in with the latest in pharmaceutical, medical technology and consumer genetic thinking.
And, I am thankful for that. Part two of conversation here.
Time for more? Here’s a short post on 5 things autism has taught me. Here is JK Rowling on the benefits of failure.
Had a good test of slow thinking (rationale thoughtful) brain vs fast thinking (emotional flight fight) brain this week.
S had to under go sedation to fix a tooth hole. His sensory sensitivity from his autistic traits made a traditional operation impossible though he tried very hard.
"Don't worry. I'm a resuscitation specialist!"
Strangely that's not the thought you want running through your mind.
I see a lot of the world through the lens of healthcare. Nothing is risk free.
Aspirin takes away headache pain with a chance of a stomach bleed.
Car helps you travel with a risk of a crash.
Living and loving makes you feel like nothing else does but with the inevitable pain of a loved one's death (which also makes you feel like nothing else).
A hole in a tooth would inevitably lead to infection and then quite possibly lead to severe illness or blood poisoning and death.
Sedation medication has a tiny chance of severe allergic shock or overdose that the need for a resuscitation specialist is so small as to be almost meaningless to calculate.
That's not what hits your brain first though when you think your child might die.
Our sense of risk if often inaccurate. It is tied up in our emotions. It is tied up in stories. It is tied up in the narratives we hear.
Even the language of risk we hear differently. We hear two out of three as a different risk to 66.6%.
We fear our children kidnapped on the streets. The stories we hear amplify that fear. And so today we believe our streets are less safe than before and our children lose the benefit of play and making decisions for themselves; and perhaps living free too. The loss is real. The risk fears are close to fantasy.
Yes. There are child gangs. But fewer than 100 years ago.
Yes. There are child groomers. But men and girls can still dance.
Yes. We still die. But life expectancy is at an all time high
... if we can but grab on to life and not fear.
Another personal piece in my thanks to Gideon. If you'd like to feel inspired by commencement addresses and life lessons try: Ursula K Le Guin on literature as an operating manual for life; Neil Gaiman on making wonderful, fabulous, brilliant mistakes; or Nassim Taleb's commencement address; or JK Rowling on the benefits of failure. Or Charlie Munger on always inverting.
An autist describes what he feels going through his head as he blurts out the wrong verbal phrase.
TROUBLE WITH TALKING
The other day, when it was time to say ‘Thank you very much’ to my helper for taking me out and bringing me safely home, the phrase that came out of my mouth was ‘Have a nice day!’ I’ve been working on these verbal set-pieces for ages and ages, but I still can’t master such simple exchanges. Talking is troublesome for me. I’d like to work through what was happening in my head when I made the mistake with my helper.
1) I wanted to say the correct thing to my helper. (In my head, ‘Thank you very much’ is stored in the ‘Everyday Phrases’ category.)
2) As soon as I tried to express my thanks, my mind went blank.
3) I floundered, having no idea what I needed to do next.
4) So I looked down, and saw the shoes my helper was wearing as he stood in the small entrance hall of our house …
5) … which reminded me of seeing my father’s shoes there earlier in the day in the very same place.
6) The scene of me saying ‘Have a nice day!’ to Dad flashed into my mind.
7) I remembered that I needed to say something to my helper …
8) … so I blurted out the phrase that was already in my head: ‘Have a nice day!’
Can you imagine a life where you’re confronted at every turn by this inability to communicate? I never know I’m saying the wrong thing until I hear myself saying it. Instantly I know I’ve slipped up, but the horse has already bolted and people are pointing out my error, or even laughing about it. Their pity, their resignation, or their sense of So he doesn’t even understand this! make me miserable. There’s nothing I can do but wallow in despondency. The best reaction to our mistakes will vary from person to person, and according to his or her age, but please remember: for people with autism, the pain of being unable to do what we’d like to is already hard to live with. Pain arising from other people’s reactions to our mistakes can break our hearts.
"A worthwhile existence lies in playing whatever cards life has dealt you as skilfully as you can."
From Naoki Higashida's book Fall Down 7 Times Get Up 8 (trans David Mitchell & Keiko Yoshida) giving you an insight in to the autistic mind.
A look at some of the answers from his first book here including video. Some thoughts from David Mitchell and the second book to make into EnglishA few thoughts from mein the business leadership style.
If you'd like to feel inspired by commencement addresses and life lessons try: Ursula K Le Guin on literature as an operating manual for life; Neil Gaiman on making wonderful, fabulous, brilliant mistakes; or Nassim Taleb's commencement address; or JK Rowling on the benefits of failure. Plus life tips from Matt Haig.
Queue of buses on London Bridge (c) B Yeoh
Short tips on waiting for buses. Practising the mindfulness of a samurai. Everyday Stoicism in action. A chance for galaxies to collide.
I'm firmly a public transport person. Through my son, I'd even venture to say I'm a reluctant enthusiast or a moderate fan, I've moved through the purely functional to where function meets form or more.
Tiles and mosaics, photographed by me as we wander in rail song. Some of the designs are based on the original Edwardian designs by Leslie Green. An interesting account of the balancing forces involved in "conserving" / replacing / updating the Underground tiles can be read here.
I've not learnt to drive. I've lived most of my life in London. Given London's Tube started in the 1850s I think the transport system has managed to play the cards it has been dealt. It's emphasis on design and art is stimulating if you pay attention; more simply a spot of sunshine on a regular heads down day.
Art on the Underground have commissioned some great works in the last 14 years. The labyrinth project (see pictures below) by artist Mark Wallinger has each station with have an enamel panel measuring 60cm by 60cm with a different labyrinth on it. All 270 are numbered them according to the route taken on the 2009 record breaking Tube Challenge.
‘Diamonds and Circles’ works ‘in situ’ is the first permanent public commission in the UK by the acclaimed French artist, Daniel Buren. The artwork transforms Tottenham Court Road station with Buren’s signature geometric patterns across the vast central ticket hall and multiple station entrances. Buren’s designs play with simple concepts; shapes, colours and stripes.
Labyrinth images. (cc) Mike Quin - see http://www.geograph.org.uk/snippet/15547 More information on Daniel Buren and his art at Tottenham Court Road, here https://art.tfl.gov.uk/projects/permanent-commission-by-daniel-buren/
Still of late, I've done my fair share of waiting for buses and here are my tips.
So first the obvious... In London, TFL through the internet can give you a very good sense of when a bus is arriving. Google maps, citymapper and the like can also help.
If those are down, or you want to go old school, then you want to check how many people are waiting at the bus stop as you approach. More people the higher chance a bus is coming. A very large crowd might indicate a broken bus or another larger problem.
You might also want to check if walking on to another nearby stop might give you a larger variety of buses to choose from.
If it looks like a long wait and you want to walk on, you can do so but you need to mentally commit - maybe make it into a game. You need to commit in your head, because there is anguish if while walking, the bus you want passes you by.
You need to borrow from the samurai.
“The rain is a teacher. If you are caught in a down pour, do not run down the road attempting to stay dry. You will still become soaked. Accept that from the beginning and go steadily on your way. You still be wet, but you won’t suffer any distress from the rain. Apply this lesson in all things.”
Due to the mental pain of the needed bus passing you, I suggest if in doubt just wait. If you end up waiting a long time, chances increase that many buses arrive together! Hope for the best, plan for the worst.
This is an occasion to practise stoic thinking and mindfulness.
“True happiness is to enjoy the present, without anxious dependence upon the future, not to amuse ourselves with either hopes or fears but to rest satisfied with what we have, which is sufficient, for he that is so wants nothing. The greatest blessings of mankind are within us and within our reach. A wise man is content with his lot, whatever it may be, without wishing for what he has not.”
Seneca wrote that about 2000 years ago. He was not thinking about waiting for buses. Given the amount of waiting I know do, and the complex patterns of transport (today only Night Tube train routes), I find I enjoy myself letting go to an autistic pattern not of my understanding. To do this, I need to relax from "an anxious dependence upon the future" and then the journey is often remarkable.
My last tip is to strike up a conversation. The two classic openers would be to ask how long they have been waiting or a comment about the weather. From there conversations could meander down any path. It does take two to dance, but an open mind and a strong lead can take you anywhere.
Bear in mind - everybody is somebody's weirdo. Trains are not conducive to random conversation. People feel too trapped to risk it. Unless "otherness" intervenes and cuts across our bubble. An autist in the zone of rail song will do this for a carriage. If you don't have such a company, then it can be tough to start conversation.
Bus stops are easier. There's more space. There's a slower pace. It's a great area for serendipity and conversation to strike. Don't ask why? Think why not?
“You see things, and say, why? I dream things that never were, and say, why not?”
Where different galaxies collide, the most interesting matter can be created.
Cross fertilise. Read about the autistic mind here and ideas on the arts here. On investing try a thought on stock valuations.
From Naoki Higashida's book Fall Down 7 Times Get Up 8 (trans David Mitchell & Keiko Yoshida) giving you an insight in to the autistic mind.
"Back in the days when I had no ways to communicate at all – no writing, pointing on my alphabet grid or verbal expression – I was extremely lonely. People who have never experienced this will go through life never knowing how soul crushing the condition of wordlessness is. If I tried to describe what it’s like to be non-verbal in the World of the Verbal in a single word, I’d choose this one: agony. And yet, this is also true: if we know there is even a single person who understands what it’s like for us, that’s solace enough to give us hope. For a long time I was tormented by the question, How come I’m the only one here who can’t talk? Why me? I often used to dream that I was able to speak. This chapter might make uncomfortable reading for those of you who live and work alongside people with non-verbal autism, but I’d like you to remember: there are lots of us, and this is what we go through. None of which is to say that people who can’t communicate should automatically be relegated to being sorry objects of pity. By living with extreme hardships day in and day out, by constantly challenging and asking questions of themselves, they search for meaning in their own lives and many of them might, eventually, access a mode of fulfilment beyond the reach of neurotypical people. A worthwhile existence lies in playing whatever cards life has dealt you as skilfully as you can."
A look at some of the answers from his first book here including video. Some thoughts from David Mitchell and more on the second book to make into English. A few thoughts from me.
When to hold on. When to pivot. When to let go.
The rule is there is no rule. One size does not fit all.
In autism as in life. In life as in art. In art as in business.
Required Reading. Eloquent, visceral and transcendental. Naoki Higashida’s examination of his autistic world, its hopes and hazards; its joys and tears; its insights and confusions; Naoki sheds a profound and revelatory light on the autistic mind.
Required reading for autism workers and those interested in the area. Everyone really. These two books The Reason I Jump (which I blog about here) and Fall Down 7 Times Get Up 8 by Naoki Higashida trans David Mitchell & Keiko Yoshida.
You can currently hear David Mitchel on Fall Down 7 Times Get Up 8 on BBC Radio 4 playback(subject to geographic licence) until mid-August. Mitchell and Higashida need no blurb from me, but it would go:
Eloquent, visceral and transcendental. Naoki Higashida’s examination of his autistic world, its hopes and hazards; its joys and tears; its insights and confusions; Naoki sheds a profound and revelatory light on the autistic mind. Required Reading.
From the introduction by Mitchell:
“…The Reason I Jump has been translated into more than thirty languages. To the best of my knowledge, this makes Naoki Higashida the most widely translated living Japanese author after Haruki Murakami... My involvement in the promotion of The Reason I Jump, however, gave me a crash course in the politics of special needs. It is not for the faint-hearted. Entrenched opinion is well armed, and its default reaction to new ideas is often hostile. While The Reason I Jump enjoyed a positive reception, an accusation was levelled that nobody with ‘genuine’ severe autism could possibly have authored such articulate prose: never mind the YouTube clips showing Naoki authoring this same articulate prose. Therefore, Naoki must have been misdiagnosed and doesn’t have autism at all; or he’s an impostor at the Asperger’s Syndrome end of the spectrum, akin to the character Sheldon Cooper in The Big Bang Theory; or his books are written by someone else, possibly his mother. Or me. The New York Times reviewer cautioned the translators against ‘turning what we find into what we want’. (The subtext I can’t help but see here is, ‘These desperate parents won’t face the fact their son is a vegetable so their objectivity is compromised.’) Elsewhere, Naoki has been accused of seeking entry into the guru business. You really cannot win. Of course, Naoki hopes that his writing contributes to a better public understanding of autism, but he is all too aware of the limits imposed by autism upon his knowledge of the neurotypical world. Reading newspapers isn’t easy for him and politics can seem baffling. As an ex-pupil of a special needs school he knows that autism comes in many shapes and sizes, so his observations on autism won’t be, and can’t be, universally applicable. Naoki is nobody’s guru: he’ll answer questions as best he can, but you take what you need and leave the rest….“
As aside:
If Ta-Nehisi Coates can write about the African-American experience and through one voice make “the hazards and hopes of black male life” “visceral, eloquent and beautifully redemptive” and thus “required reading” (quote from Toni Morrison) then I think Naoki can for autism. As aside, I do think Coates is also required reading. Through both of those lenses (and with a dose of Andrew Solomon’s Far from the Tree) you can gather that perhaps an autist, a black American, a gay person, even a “genius” have most in common than you might think. [More on this another day I hope]
Andrew Solomon quotes Nobel laureate Eric Kandel: “If we can understand autism, we can understand the brain.” Solomon adds: “That is a generous way of saying we will understand autism only when we understand the brain.”
My most instructive experience of all was being told point-blank by a fellow contributor to a radio programme that The Reason I Jump couldn’t be genuine because Naoki employs metaphor, and people with severe autism can’t understand what a metaphor is, let alone create one. In fact, I’ve watched Naoki spell out similes and metaphors on his alphabet grid on a number of occasions, but that day I found myself in one of those no-win situations where protestations of probity only persuade your accusers that there’s no smoke without fire.”
Spike seems likely more verbal than Naoki or Mitchell’s son, but certainly on the magenta-yellow-splodge scale of speaking. And Spike has written this:
“…Ultimately, I believe that while severe non-verbal autism does indeed look like a severe cognitive impairment, the truth is it’s not: it’s a severe sensory-processing and communicative impairment. These words hold a world of difference. To deny that a severely autistic brain may house a mind as curious and imaginative as anyone else’s is to perpetuate a ruinous falsehood. (The historical analogy is deafness, which from Aristotle’s era until the advent of sign language in the nineteenth century was also thought to be indicative of a severe cognitive impairment –hence the synonym for stupid, ‘dumb’.)…”
“…A person’s autism doesn’t conveniently peter out at a certain age, nor does it stop evolving. Our son is now eleven and we’ve already found this volume to be a useful source of insight into how adolescence can impact upon autism, as well as an indication of what to expect further ahead. Most of its short chapters were written by Naoki for his blog between the ages of eighteen and twenty-two, though he often analyses his younger self from his more mature perspective. So we hope this new book will be of practical help for other ‘autism-insiders’ with both young and older teenagers on their hands….”
“For general readers, we hope the book will offer another opportunity to slip into an autistically wired brain……. The title Fall Down Seven Times, Get Up Eight is borrowed from a Japanese proverb about the merits of persistence, and the book offers experience, advice and hope. Its pages map the limits placed by non-verbal autism upon its author’s life, but also describe how Naoki has been able to transcend, renegotiate or just learn to live with those same limits. The book shows how a disability can be turned into a field of endeavour and the pursuit of a purposeful life. If this is possible for Naoki, it may be possible for others, too. Autism has a habit of making clean labels like ‘verbal’ and ‘non-verbal’ murky. With neuro-atypical people, communicative ability exists on a spectrum and not in a binary yes/ no position. Whenever I’m asked ‘Is your son verbal or not?’, in order to reply fully I have to explain that while his comprehension appears to be good and he can name many hundreds of objects in English and Japanese, his spoken communication is limited to a few phrases, and he’s never had a conversation longer than three or four exchanges of these phrases. I cannot know for sure whether he understands none, some or all of a conversation between third parties. If I could be sure, it wouldn’t be autism we were dealing with (and if I had £ 10 for every time I’ve said that last phrase, I could buy a mid-range family car). Autism is a relative thing as well as label-resistant. Compared to some of his peers who have never uttered a word in their lives, and indeed compared to Naoki, my son is rather verbal: but relative to his neurotypical contemporaries, he’s a step away from muteness. … One’s position on the verbal-non-verbal spectrum can fluctuate according to mood and stress, and shift in the long term. Naoki has only ever answered one of my questions aloud, without using his alphabet grid. We were at lunch. His answer was a simple ‘Yes’ and the whole table smiled in surprise at this achievement, Naoki included. (I’m embarrassed to admit I’ve forgotten the question.)… My own son is free from many of the classical autistic ‘tics’ that Naoki is burdened with, and over short periods he can even pass as neurotypical. In contrast, ten seconds in Naoki’s company is enough for his autism to become unmistakable. My son, however, shows no sign –yet –of being able to communicate the richness of his inner life in the way that Naoki can. Whose autism is more severe? An accurate answer isn’t straightforward. I accept that we need words for degrees of disability, but I’ve developed allergies to the current terminology of ‘severe’ versus ‘mild’ (redolent of colds and curries) or ‘high-functioning’ versus ‘low-functioning’ (Commander Data from Star Trek versus a 1980s home computer). Not long ago I met up with an old acquaintance whom I hadn’t seen since my son was diagnosed, who said –with the air of one who doesn’t waste time beating about the bush –‘So, I understand your son’s severely autistic?’ Apart from feeling a bit stung, I felt stumped by the paucity of the question. The severity of my son’s autism varies wildly from aspect to aspect –communicative, behavioural, self-management, sensory processing, gross and fine motor control. Other variables are mood, tiredness and even the time of year (watch out for November, after the clocks have been turned back an hour). Shorter answers to the question ‘How autistic is he or she?’ are blunt and reductive, yet their ramifications –in education, in the provision of disability-allowance –can be life altering. As I explained all this to my acquaintance, I wished that autistic severity and mildness could be calibrated in terms of ink-cartridge colours, with yellow at the Asperger’s end, magenta at the harder-core pole and cyan in the middle, as in: ‘Well, his autism’s functionally fairly cyan, but if people are telling him No! all the time it can get splotchy with magenta. Mind you, when he’s writing words on his Magna-Doodle or kicking ass at Temple Run on his iPad his autism glows canary yellow.’ That works for me: if it works for you, pass it on.”
“To conclude: the translators hope that Fall Down Seven Times, Get Up Eight will find a place in the growing corpus of ‘autism-witness’ texts that inform the public, help to dispel myths and misconceptions past their expiry dates, promote the cause of neurodiversity, and encourage people to think twice before using the word ‘autistic’ when they mean ‘anal’ or ‘up-tight’. Autism is a fact of our world, which shapes the lives of millions. We cannot change this fact, but we can change our attitudes.” David Mitchell Ireland, 2017.
I’ve included almost all his introduction (I hope Mitchell won’t mind) as it seems important to me, and hard to edit out the thread of his argument.
There’s more from the BBC on it being book of the week here. There’s recent (July 2017) article from David Mitchell in the Guardian talkingabout autism and his wish list.
And I have written previously about Naoki’s first published book here.
A glimpse inside the head of a 13-year-old autistic boy. The Reason I Jump: one boy's voice from the silence of autism by Naoki Higashida, David Mitchell, Keiko Yoshida. For parents, typicals, atypicals and everybody.
David Mitchell's introduction to the book. It starts: "The thirteen-year-old author of this book invites you, his reader, to imagine a daily life in which your faculty of speech is taken away. Explaining that you’re hungry, or tired, or in pain, is now as beyond your powers as a chat with a friend. I’d like to push the thought-experiment a little further. Now imagine that after you lose your ability to communicate, the editor-in-residence who orders your thoughts walks out without notice. The chances are that you never knew this mind-editor existed, but now that he or she has gone, you realize too late how the editor allowed your mind to function for all these years. A dam-burst of ideas, memories, impulses and thoughts is cascading over you, unstoppably. Your editor controlled this flow, diverting the vast majority away, and recommending just a tiny number for your conscious consideration. But now you’re on your own."
From the book:
WHY DO PEOPLE WITH AUTISM TALK SO LOUDLY AND WEIRDLY?
...Honest, I want to be nice and calm and quiet too! But even if we’re ordered to keep our mouths shut or to be quiet we simply don’t know how. Our voices are like our breathing, I feel, just coming out of our mouths, unconsciously...
WHY DO YOU ASK THE SAME QUESTIONS OVER AND OVER?
...The reason why? Because I very quickly forget what it is I’ve just heard. Inside my head there really isn’t such a big difference between what I was told just now, and what I heard a long, long time ago. So I do understand things, but my way of remembering them works differently from everyone else’s. I imagine a normal person’s memory is arranged continuously, like a line. My memory, however, is more like a pool of dots. I’m always ‘picking up’ these dots –by asking my questions –so I can arrive back at the memory that the dots represent...
...it lets us play with words. We aren’t good at conversation, and however hard we try, we’ll never speak as effortlessly as you do. The big exception, however, is words or phrases we’re very familiar with. Repeating these is great fun. It’s like a game of catch with a ball. Unlike the words we’re ordered to say, repeating questions we already know the answers to can be a pleasure –it’s playing with sound and rhythm.
WHY DO YOU DO THINGS YOU SHOULDN’T EVEN WHEN YOU’VE BEEN TOLD A MILLION TIMES NOT TO? ‘
...How many times do I have to tell you?!’ Us people with autism hear that all the time. Me, I’m always being told off for doing the same old things. It may look as if we’re being bad out of naughtiness, but honestly, we’re not.
...we feel terrible that yet again we’ve done what we’ve been told not to. But when the chance comes once more, we’ve pretty much forgotten about the last time and we just get carried away yet again. It’s as if something that isn’t us is urging us on. You must be thinking: ‘Is he never going to learn?’ We know we’re making you sad and upset, but it’s as if we don’t have any say in it, I’m afraid, and that’s the way it is. But please, whatever you do, don’t give up on us. We need your help.
WOULD YOU LIKE TO BE ‘NORMAL’?
...for ages and ages I badly wanted to be normal, too. Living with special needs is so depressing and so relentless; I used to think it’d be the best thing if I could...But now if somebody developed a medicine to cure autism, I might well choose to stay as I am. Why have I come round to thinking this way? To give the short version, I’ve learnt that every human being, with or without disabilities, needs to strive to do their best, and by striving for happiness you will arrive at happiness. For us, you see, having autism is normal –so we can’t know for sure what your ‘normal’ is even like.
But so long as we can learn to love ourselves, I’m not sure how much it matters whether we’re normal or autistic.
WHY CAN YOU NEVER STAY STILL? My body’s always moving about. I just can’t stay still. When I’m not moving, it feels as if my soul is detaching itself from my body, and this makes me so jumpy and scared that I can’t stay where I am. I’m always on the lookout for an exit. But even though I’m forever wanting to be some place else, I can never actually find my way there. I’m always struggling inside my own body, and staying still really hammers it home that I’m trapped here. But as long as I’m in a state of motion, I’m able to relax a little bit.
WHY DON’T YOU MAKE EYE CONTACT WHEN YOU’RE TALKING?
...True, we don’t look at people’s eyes very much. ‘Look whoever you’re talking with properly in the eye,’ I’ve been told, again and again and again, but I still can’t do it. To me, making eye contact with someone I’m talking to feels a bit creepy, so I tend to avoid it. Then, where exactly am I looking? You might well suppose that we’re just looking down, or at the general background. But you’d be wrong. What we’re actually looking at is the other person’s voice. Voices may not be visible things, but we’re trying to listen to the other person with all of our sense organs. When we’re fully focused on working out what the heck it is you’re saying, our sense of sight sort of zones out. If you can’t make out what it is you’re seeing, it’s the same as not seeing anything at all. What’s bothered me for a long time is this idea people have, that so long as we’re keeping eye contact while they’re talking to us, that alone means we’re taking in every word. Ha! If only that was all it took, my disability would have been cured a long, long time ago …
Skeptics question this method of communication to which Mitchell writes in his second book (more on this here): "...he has learned to communicate by ‘typing out’ sentences on an alphabet grid –a QWERTY keyboard layout drawn on a sheet of card with an added ‘YES’, ‘NO’ and ‘FINISHED’. Naoki voices the phonetic characters of the Japanese hiragana alphabet as he touches the corresponding Roman letters and builds up sentences, which a transcriber takes down. (Nobody else’s hand is near Naoki’s during this process, a point that alphabet-grid communicators in a sceptical world need to restate ad infinitum.) If this sounds like an arduous way to get your meaning across, you’re right, it is; in addition, Naoki’s autism bombards him with distractions and prompts him to get up mid-sentence, pace the room and gaze out of the window. He is easily ejected from his train of thought and forced to begin the sentence again. I’ve watched Naoki produce a complex sentence within sixty seconds, but I’ve also seen him take twenty minutes to complete a line of just a few words. By writing on a laptop Naoki can dispense with the human transcriber, but the screen and the text-converter (the drop-down menus required for writing Japanese) add a new layer of distraction. It was via his alphabet grid or his computer keyboard that Naoki wrote every sentence in this book. [the second] "
You can see this in this Japanese YouTube video below which captures part of the process and Naoki's autistic traits.
Other articles and links of note: Guardian Interview with David Mitchell in 2013; and David Mitchell interview in 2013 below. There is also
The cow was as black as the sky.
The cow was as white as paper.
The cow was as soft as sofas.
The cow was as fluffy as toys.
The cow moos as armadillos.
Autists have a remarkable ability to put the unexpected together and create images, words and ideas that are fresh and new.
These ideas stimulate us to places we would not find otherwise.
...quiet as a dark sky
shy as a train leaving...
If I could pursue more of this I would, if I could be half as inventive.
Some thoughts on what we can learn from autism, ASD, written in the self-help leadership style.
What unites humanity is vast and wonderful.
In the tapestry that is being human, you will always find someone who will seem odd to you. Likewise, you will always be peculiar to someone else. That is no reason for fear or hatred.
In finding out how oddball you are to some people, you can grow a wider appreciation of your own biases.
We all have them. We are all human.
A quick decision particularly over questions of limited materiality (a Jeff Besos type 2 decision) is efficient. However, I have found I have won out in many situations by exhibiting patience. More patience than my competitors. I can out-wait most. Some psychologist have called this "grit". Economists talk about taking time horizon risk. I call it what you learn by losing going toe to toe with an autist.
Patience is a winning strategy
Autists reveal what are social norms because they often flout them (I won't go in to theories of why, just the empirical observation that they do). This in turn reveals that much more of the world is built upon social norms than I had thought.
We do things because other do things. Lemmings. Herd mentality. All well documented. Yet it goes deeper to matters you would not question until an autist throws it, into stark relief.
Why do boys wear blue and girls pink? They did not 80 years a go. It's a social norm created by marketeers. Why do we shake hands ? (In fact, in many cultures, we do not). Why don't we speak truth to power ? Most autists I observe do not lie. If a person is fat, why not say they are fat ? Is it more harmful to turn from the truth (of course, white lies have their place in typical society, but what effect does that have?) Question if something is right, do not rely on the fact that everyone else does it.
Autists often obsess. People on the autistic spectrum also seem to create break throughs or invent non-standard thinking more regularly than typicals. Gladwell has written about the 10,000 hours plus it takes to reach a 'genius' level.
You are unlikely to have a novel breakthrough just ploughing the same furrow. Neither will you master anything unless you keep at, perhaps long after others have fallen by the way side (cf. Patience as a strategy).
Autists will sail steadfastly obsessively on beyond where I thought I could tread. That inspires me to more, even if I have no comprehension of what that obsession might be. Prime numbers, Disney cartoons, the cracks in the street, the music in the air, train couplers....
Sure, if you like, go fail conventionally.
That is not the way of the autist.
Post an interview, some CEOs and managers will ask how the candidate treated the support staff along the way to the interview. I've heard many repeat the adage of how someone treats a waiter or receptionist reveals a true character.
This is heightened when facing difference. While we can be trained to be polite to waiters and receptionists, there's a routine we can follow. Throw in unexpected difference, an autist, a different culture, a deaf person, a conflict...
We can all learn that, and be better people for it.