Ethical Progress, better today than before

Ethical Progress, better today than before

I’ve been thinking how much progress (or not), we as humans have and the challenges around “progress studies” (cf Tyler Cowen, Patrick Collison) and the idea that the rate of progress have slowed down recently (say in the last 10 to 20 years) vs. mid 20th century. These have mostly been in the items of human development that we can more easily measure (life expectancy, science innovations, crop yields, mobility and the like) but I wonder about our social progress via the lens of where people mostly put “common sense morality”. 

200 years ago, womens’ vote was not the norm and the sane with many notions of equality many societies have today. Further back, slavery was the norm and it isn’t today.

From a personal view, I think in particular the ethical progress we have made with autistic people and other differences in cognitive profile. There are still enormous challenges that I don’t want to be little (I was speaking to someone who noted that autistic children in Sierre Leone are considered under spells of witch craft today by many people). But it strikes me it’s better today than say the 1950s both for parents - where for instance the awful “refrigerator mother” theory was common thinking - and for children - while we still face enormous struggles.

If we can continue to make social progress this should hopefully continue to enrich humanity and it’s important we continue to make this progress even if it might not readily show up in GDP (although I actually suspect it might show up there too eg. in access to work).

Neurotribes: Legacy of Autism, Neurodiversity movement

A look into the arguments behind the concept of neurodiversity: that autism can be regarded as naturally occurring cognitive variations with strengths that have contributed to culture and technological advances... also examines the history of autism with a lens emphasis on hearing the stories of autistic people themselves.  The below is a short extraact from Steve Silberman NeuroTribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently (Link to Amazon here).  (Note his original observations on Hans Asperger are already considered out of date - and wrong - in the light of more recent work, and the latest addition of the work corrects this)

In Neurotribes, SS quoting Oliver Sacks:

“Sacks cast light on the challenges that they face in their day-to-day lives while paying tribute to the ways they bring the strengths of their atypical minds to their work. “No two people with autism are the same: its precise form or expression is different in every case,” he wrote. “Moreover, there may be a most intricate (and potentially creative) interaction between the autistic traits and the other qualities of the individual. So, while a single glance may suffice for clinical diagnosis, if we hope to understand the autistic individual, nothing less than a total biography will do.”"

[On the current state on the heterogenous nature of genetic factors found]

....The authors of a major study published in Nature admitted that even the most common genetic factors brought to light in their research were found in less than 1 percent of the children in their sample. “Most individuals with autism are probably genetically quite unique,” said Stephen Scherer of the Hospital for Sick Children in Toronto. UCLA neurogeneticist Stanley Nelson added, “If you had 100 kids with autism, you could have 100 different genetic causes.” A wry saying popular in the autistic community, “If you meet one person with autism, you’ve met one person with autism,” turns out to be true even for molecular biologists. In 2010, I spoke to one of the fathers I’d interviewed nine years earlier. He told me that he was no longer worrying about what had caused his daughter’s autism. Instead, he was concerned about her future. She was about to “age out” of the modest level of services that the state of California provided to the family. Despite years of behavioral therapy, her skills had not developed to the point where he and his wife felt confident that she would ever be able to live on her own. “The question that keeps me up at night,” he said, “is what will happen to our beloved daughter when we die?” With the Centers for Disease Control (CDC) currently estimating that one in sixty-eight school-aged children in America are on the autism spectrum, millions of families will be facing sleepless nights in the coming decades. Many autistic adults are not exercising the strengths of their atypical minds at companies like Apple and Google—instead, a disproportionate number are unemployed and struggling to get by on disability payments. ...

... One of the most promising developments... has been the emergence of the concept of neurodiversity: the notion that conditions like autism, dyslexia, and attention-deficit/ hyperactivity disorder (ADHD) should be regarded as naturally occurring cognitive variations with distinctive strengths that have contributed to the evolution of technology and culture rather than mere checklists of deficits and dysfunctions....

... The notion that the cure for the most disabling aspects of autism will never be found in a pill, but in supportive communities, is one that parents have been coming to on their own for generations...."

Should be read alongside  Andrew Solomon's Far from the Tree

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5 lessons autism has taught me.     And from Japan,  a glimpse inside a 13 year old autistic boy's head,   a blog from E Price on living in a neurotypical world,  and click the Autism tag below for more posts on ASD thinking.

Thoughts from Autist living in a neurotypical world

A thoughtful blog about how one autistic person (E Price) functions in a neurotypical world. It’s a 15 min read about various aspects of their life and gives a tiny glimpse into the compromises needed.

It starts:

“I’m an Autistic person with a pretty put-together looking life. I always make rent. I have money socked away in savings and investments. I juggle several teaching jobs and do statistical and methodological consulting work. I sometimes find time to write. I have a social life. Except for the occasional noticeable chest crumbs, I present as clean and well-dressed. I manage my stress. I sleep. I eat.

I don’t think I strike the average person as disabled at all. I get work done on time. I show up to things I say I’ll show up to. I don’t show much distress in public. I rarely ask for help. Because psychological disorders are often viewed through a lens of impairment, people might call into question whether I am neuroatypical at all.

Viewing disabilities — and mental disorders — through a lens of impaired functioning is very flawed. The fact that I am functioning does not mean I’m not impaired, or that functioning is not hard. That I can survive, day by day, does not mean that I am thriving, or that my life is as easy as it is for a neurotypical person. And the aspects of my life that are impaired are rarely visible to an outside eye.

We often don’t see a person at their lowest moments — when they are crying and nonverbal, or engaging in self harm, or refusing to eat, or isolating from everyone they love. We can’t always tell if someone is struggling to make it through the work day, or if their sleep and exercise habits have been disrupted. And we don’t know, from the outside, what a person has been forced to sacrifice in order to live a seemingly “functional life”.

A lot of us “function” because we have to.

A lot of disabled or mentally ill people are able to work a job, pay rent, and get by through an elaborate system of compromise and sacrifice. We may have abandoned career paths that were too demanding of our mental energy, or lost relationships that were too socially or emotionally taxing. ...”



“Even with all the immense, unfair advantages that life has given me, life as a neuroatypical person is hard. There are many careers paths I could never successfully follow, and workplaces I could never inhabit. Frustratingly, this is not due to a lack of interest, motivation, or skill, but because I’m not good at existing in a milieu where small talk, meetings, ambient noise, and social politics are abundant.”

A thoughtful read check it out here from E Price.

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5 lessons autism has taught me.     And from Japan,  a glimpse inside a 13 year old autistic boy's head.

Autism, David Mitchell Guide

"“So how autistic is your son, exactly?” “Well, his sensory processing is pretty cyan these days. Speech-wise, he’s light magenta. A nice canary yellow when it comes to motor control and memory functions, mind you. Thanks for asking.”"

I've referred to the David Mitchell piece (see here)  previous in looking at his translation of Naoki Higashida's book.   It's worth re-examining in more detail, if you haven't as it is insightful and genuine.

“If you’ve met one person with autism, you’ve met one person with autism.”

"So what are we still getting wrong about autism, and how do we get it right? My answers form a kind of wishlist. First up, is that we stop assuming a communicative impairment denotes a cognitive one. Let’s be wary of assuming that behind autism’s speechlessness lies nothing, or nothing to speak of. Instead, let’s assume that we’re dealing with a mind as keen as our own, and act accordingly. Talk to the person. Don’t worry if there’s no evidence he or she understands. Maybe there is evidence, but you’re not recognising it as such. If the person is there, never discuss them as if they’re not, or as if they’re only there like the coat stand is there. If they don’t notice this courtesy, no harm is done; but if they do, then someone who is often treated as a part-object, part-human, total nuisance gets to feel like a real, valid, card-carrying member of society."

Life Learnings

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.

More Answers from an autistic mind

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.

Answers from an autistic boy

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 

Autism. One more lesson.

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.