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Anoushka made a book:
I made a book about #autism for Spike (aka “Jpike”). We haven’t hidden his autism from him (as if we could!), but we tend to talk descriptively about his strengths and weaknesses. I wanted to make sure that he could connect positively with the word “autism”, too. He LOVED it! pic.twitter.com/FFtpwcguBc
— Anoushka (@Spittingyarn) April 16, 2020
I’ve awarded a grant to Mary for costs needed to go an Autism Conference.
Mary writes:
‘Then Do Better’ grant will ensure that I can attend the Pan-African Congress on Autism conference 2020, share experiences that will help break the ‘stigma’ barrier, make vital networks, and learn new approaches that will add value to the work of SLAS and to the global autism community.
The Sierra Leone Autistic Society (SLAS) is a Non-Governmental Organisation (NGO) in Sierra Leone (SL). It is currently the main organization (and one of only two organizations) providing support for people with autism in SL. In 2017, before the establishment of SLAS, there was nowhere a family impacted by autism could turn to for support. Upon relocation to SL I had no school for my daughter who has severe autism to attend and no services to meet her needs. Realizing that this was the plight of many families, I teamed up with a colleague and we started SLAS. Our aim was to provide access to health, education, psychological and social interventions and strategies for people with disabilities, with a specific focus on those with Autism.
To date, SLAS runs a school for children with autism and other neuro-developmental conditions, and we provide a variety of services: health, social and educational. SLAS provides carer support which ensures vital respite. The biggest barrier for people with autism in SL, like many other low-resourced countries is ‘stigma’. Many people still believe that autism is related to witchcraft, etc. As such, sensitization is key and SLAS works in the communities to demystify these myths. There are many families needing our support, but SLAS currently operates in only two regions of the country, which means that there is still serious lack of support for families impacted by autism. Whilst our capacity is growing we need support to expand our services. www.sierraleoneautisticsociety.org - will be on twitter with @InclusiveFutur2
More on the £1K grants for positive impact available here.
Photo by Saeed Adyani / Netflix
There’s been media speculation on whether Bill Gates might be (sub-clinical) on the autism spectrum.
One observation out of several on watching the documentary on his life (which is mostly uncritical and simply lays out most of the brightside of his life) is that certainly in his early he had a high degree of social awkwardness.
The story suggests if it wasn’t for his mother pushing him into many social situations (against his desires) he wouldn’t have learnt the social skills he needed in later life. There were these arranged dinners and social occasions. Certainly, these would be traits of many on the spectrum.
Even so, it was revealing the pushing and “learning” needed here and the major role his mother played.
Another observation was that Bill was (and is) extremely clever and able - not only in coding and maths ability, but from a young age an interest in business acumen. (Seemingly already have picked up enough social skills by mid/late teens, and going on to learn other presenting skills).
There are not so many people I observe, who I think - wow that’s straight up in another league to me - I have the impression Bill Gates is. Certainly, he had what we now seem to call privilege when growing up but he didn’t waste his advantages and already from young a mix of relentlessness and of following his own path was apparent.
The role of luck was a sub-plot. The luck of the advantages he had, but the luck that he didn’t die in an accident like his childhood best friend. I had the sense he appreciated this.
I had childhood friends die. I know enough about chance to know, I’ve had some very decent slugs of my luck my way - or avoiding bad luck.
His knowledge on climate change was strong (to me) - and Vaclav Smil appears as a cameo with Gates having read a fair number (if not all?) his books.
The challenges around the anti-trust cases against Microsoft were handled quite lightly. The emotional and human cost on Bill came through, but I don’t think I came away with many insights. Perhaps a touch of the single-minded perhaps ruthless qualities that are also needed by business creators. But only a very slight look at that.
His friendship with Warren Buffet, although not a large section of the documentary, came across as very genuine and seems quite a unique partnership of smart billionaires.
Certain billionaires come with rather mean seeming characters. Whilst, presumably - like Warren Buffet’s - his public persona is cultivated, at heart Bill genuinely does seem to be putting his heart and mind in the right place - and putting his billions to work in solving humanity’s problems.
Am I worried that the film was uncritical, neither looking at the critics of billionaire philanthropy or taking any views from those who argued for Microsoft’s (and Bill’s) ruthlessness? I don’t think so. This was obviously not that story and while Bill was hardly pushed in any of the interview questions - I still think it offers a glimpse into the man.
It’s not as insightful as Elon Musk and Joe Rogan. And I doubt we will ever have that level of insight in to one of the richest and most influential people of our time.
What’s my name ?
We answer.
What’s my brother’s name?
We answer.
What’s my Mummy’s name?
We answer.
What’s my Daddy’s name?
We answer.
What’s my pet vacuum cleaners name?
We answer.
This ritual has been a constant waking up refrain for the last few weeks.
Ritual plays a heightened role in my son’s life. Not the typical rituals of hand shaking or eye contact or waving or using cutlery - no, the rituals of an inner life and, I imagine, a fabulously rich world that I have only glimpsed access to.
Pico Iyer in his Guide to Japan writes:
“...During the war, the Japanese referred to B-29 planes as “B-san,” meaning “Mr. B.” As if the planes had minds of their own. Deferring to forces larger than oneself is a large part of how Japan carries itself, seeing the advantage of waiting to pushing ahead. • “Now, Life Is Living You,” says the large sign in English outside the big temple that greets you as you proceed one block north from Kyoto Station. • On Naoshima, my wife and I had to ride a private train up to our room; within moments, Hiroko had dubbed the vehicle “Tom.” Suddenly the green six-seat contraption that rattles up and down a hill, a single lamp at its front, had as much character and warmth as a beloved train-set, and we were being careful with it and looking out for Tom’s arrival as fondly as if we were awaiting a small nephew. • Returning from our trip, I noticed that the photos Hiroko had taken of stuffed animals were far more full of feeling and poignancy than the pictures she took of friends and family. The humans, after all, always flashed peace signs and put on smiles, as if to render themselves generic. • My neighbors think nothing of flocking to a station to wave to a train that’s being taken out of service, bringing flowers or presents for the carriages—or sending a teddy bear on a journey if they can’t make the trip themselves. A school of local thought holds that “mountains and rivers, grasses and flowers, can all become Buddhas.”
What do you see when you enter a toilet ?
What do you deeply see?
I’d venture. Not much.
Before my son, I’d not see very much either.
Now I see a different world. Of course, it is the same world. It’s not parallel, if anything it’s reverse. Or contradictory.
Again, Iyer quoting Wilde:
“Nothing is so dangerous as being too modern,” we read in An Ideal Husband. “One is apt to grow old-fashioned quite suddenly.” • “Consistency,” Wilde declared in an essay, “is the last refuge of the unimaginative.” • “Life is far too important a thing,” we hear in Lady Windermere’s Fan, “ever to talk seriously about.”
This is part of the world we see.
Not an invisible roof - but circles and shapes and details.
Patterns and colours.
Shapes out of place.
The makers of taps. The logo of hand dryers.
Such items some times to be covered up.
The colours. The lines.
Form trumps function such that we never get beyond the threshold if the forms can not pass the impossible tests.
Some of our most expensive artists of all time expend effort to place items such as a toilet in a space - on a pedestal - for us to view.
Part provocation part joke part philosophical engagement the art-ification invites us to view these items as something other.
My son feels these objects and patterns deeply.
“Take care of things,” as the Zen teacher Shunryu Suzuki said, “and things will take care of you.”
If you were to transport my son and me or my wife on stage as we about to enter a toilet it would qualify as provoking Performance art.
Critics may cry that this makes a comment on the state of performance art.
I would gently suggest our performance would reach heights of comedy and tragedy that would be deeply human.
What is it…? What is… it? What…. is it?
It’s a - it’s a - it’s a
Dysoooon.
Let’s dance back.
Let’s dance forward.
Let’s shut our eyes at the intensity of reality.
Let’s flap our hands.
Switch it off. Switch it off. Switch it off.
Take a photo. Let me take a photo.
Make a video.
What sound does it make?
Brrrr-shrvvvbbr-brrrrr.
The visceral blast cooks our brains
Excited and repels us.
Let’s wash our hands.
Is it automatic?
Where’s the soap….?
Is it a Gojo or a Mr Soapy Soap !
It’s a Deb!
Pause.
.
.
.
.
An unexpected crack.
A sticker out of place.
A dispenser crooked.
Let’s observe and reflect on the enormity of unrightness.
“Zen is what remains when words and ideas run out. • What we see and smell and hear is real, it reminds us; what we think about that is not.”
No one else I’ve ever met has looked - really looked - at this hand dryer with such intensity
As if the answers to world problems would spill out if only we knew how to unlock it.
I only glimpse and dance around my son’s world.
But it feels the same to me - if only I could properly see, I’d understand.
We can share the will to share
Seeing us dance you can share
In our humanness but we fail to share
The meaning of the hand dryer
We can laugh or cry at it all.
“When one of his Western students was having trouble cleaning toilets, Zen teacher Suzuki suggested she speak to the toilets as if they were her friends, telling them how happy she was to get the chance to look after them. It worked.”
And so our performance ends only to repeat.
What’s my name ?
We answer.
What’s my brother’s name?
We answer.
What’s my Mummy’s name?
We answer.
What’s my Daddy’s name?
We answer.
What’s my pet vacuum cleaners name?
We answer.
More on autism here:
Sam is a barista who has autism, and to help him focus, he dances his way through the workday. After a video of his dance moves went viral, Ellen had to meet this inspirational individual and his incredible boss in person.
And (I think) the orginal video below.
(via) The Lindy effect is a concept that the future life expectancy of some items or concepts such as technology or an idea is proportional to their current age, so that every additional period of survival implies a longer remaining life expectancy. My idea of Lindy comes from reading Nassim Taleb, who expands upon the writings of Beniot Mandlebrot who described an effect of a deli
Lindy is a deli in New York, now a tourist trap, that proudly claims to be famous for its cheesecake, but in fact has been known for the fifty or so years of interpretation by physicists and mathematicians of the heuristic that developed there. Actors who hung out there gossiping about other actors discovered that Broadway shows that lasted, say one hundred days, had a future life expectancy of a hundred more. For those that lasted two hundred days, two hundred more. The heuristic became known as the Lindy Effect.
Perhaps, it can be best thought of via example eg that butter is more Lindy than margarine and that olive oil is a very lindy cooking oil of our times.
Lindy is not really meant to be applied to perishable items. Nonperishable are Lindy. Ideas, technologies and institutions.
So… I think autistic thinking has been Lindy over the ages. Why might this be the case?
Autistic thinking tends not to follow the dominant social consensus thinking of the time, I also argue, autistic thinking can importantly lead to radical breakthrough where you have leaps of understanding that perhaps typical thinking would not demonstrate.
Rates of ASD diagnosis in the US are around 1 in 65, with New Jersey as high as 1 in 45 and between 1 in 50 to 1 in 100 a likely typical range in Level 4 countries.
If you look back 70,000 years there’s evidence that early man, Neanderthal man looked after his disabled siblings into old age..
Anecdote suggests that autism and autistic thought has been present in human society for hundreds of years, while both environment and genetic factors both plays roles I find it noteworthy that nature and its Darwinian forces seemingly have conserved autism and that autistic thinking might be Lindy.
If there is some aspect of autism that is Lindy why might it be so? I might be entirely wrong but let’s go a storytelling...
Why might that be…?
Autistic thought tends not to follow the crowd of “herd” thinking or social pressure or social learning.
These traits can be incredibly useful.
Think about any paradigm shift in thought which requires ideas outside of normal. A non-autist has social pressures and social learning that an autism might not.
An ice age has set in. On the one hand, you need tools and weapons to hunt. You need social communication to co-ordinate large groups of people. You need leaders of those groups.
But, you need inventors to create tools which are different to the status quo. If everyone hunts the mammoth in only one way and that way stops working, you need someone who can think differently and sees a solution not because “we’ve always done it this way” but because there’s a way that makes sense to autistic thought that non-autistic thought can’t reach easily.
The rest of the human society, maybe the leader of those small ape-like human groups, can see the value in these different autistic thinkers who have ways of seeing and answers to problems the “herd” can not solve.
Maybe I go too far to suggest that this different thinking is treasured.
But if the autistic way has been treasured for tens of thousands of years, perhaps that’s one explanation for why is survives in humans today.
And with estimated rates of 1 in 100 (and rising) with close to 1 in 45 in New Jersey being diagnosed on the spectrum, is this an argument for autistic thought being Lindy - and for why we should still treasure our autists and their way of being.
“Everyone has sad patches. We need to accept who we are. We are All individuals, with some rainy days and some sunny days.”
That was part of my conversation with M. She walks the platforms at South Kenton and helps anyone feelingly poorly mentally and contemplating jumping.
Spike has taught me a lot about being mindful and happy in the moment; but also the stoic side of dealing with rainy days which have to happen.
One other tool I use is the “talk to everyone” technique. There’s a line of work which suggests that making human connections even small everyday ones gives us deeper meaning and contentment in our lives. It’s not necessarily always talking, but it is often through connecting at some level.
And it’s by saying hello to M on the platform that I learned her role and heard her wisdom.
How to live a life, well lived. Thoughts from a dying man.
If you'd like to feel inspired by commencement addresses and life lessons try: Neil Gaiman on making wonderful, fabulous, brilliant mistakes; or JK Rowling on the benefits of failure. and Sheryl Sandberg on grief, resilience and gratitude .
On Autism: some thoughts from non-verbal ASD Naoki Higashida and his book Reasons I Jump. My own twee Things I learnt from autism, such as, Everybody is Somebody's Wierdo. And below the last post on how one Mum doesn't use a high-functioning label any more.
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.
"“Why can’t I speak? How come I’m the only one who can’t do it? How I used to agonise over these questions as I watched the other kids doing all kinds of things effortlessly that I’d never be able to manage, not even if I spent my entire life trying.
Every time, I just wanted to break down and cry. I stuck with my regular primary school until fifth grade –age eleven –but it had become so physically and mentally exhausting by that point that I transferred to a school for children with special needs.
My feelings about the move were ambivalent, and remain so. In one sense, it felt like I was running away and, once there, it took me a whole four years before I found a path to my authentic self. On the other hand, until then I had never observed a class in a special needs context and I was surprised by the big differences between classes there and the education I had been used to. While I was conflicted about the ‘special needs’ label, the kindness I encountered from both teachers and students –unthinkable at my previous school –took the edge off my unhappiness. There, I was no longer a ‘problem case’ but just a regular student. Some students were more capable than me while others had more severe challenges, and for the first time I realised how many neuro-atypical children existed in the world.
The school for children with special needs afforded me the freedom to be what I was, but it became less a place to receive an education and more a place to think about my autism. Time passed without my really doing a great deal. The classes were, in theory, tailored to each student’s disability profile, but in practice the teachers had enough on their hands just handling the students’ routine requirements. Some students were ‘long termers’ who had been there since first grade, while others, like me, had transferred in from regular schools because it was thought they were better suited to a school designed for special needs.
Looking back, most of my classmates seemed to enjoy their days at school without any complaints, but I still wonder if they all believed that this was the place they truly belonged? That said, my new school was a place where neuroatypical students were at least free from bullying or ignorant tellings-off. The school taught me the importance of being able to accept assistance and of being respected and valued by others.
I learned that we all have a right to live as a human being should live, and that happiness is attainable whether we have a disability or not. I saw a future path leading first to a high school for students with special needs (to which my new school was attached) and then to a work-centre for people with disabilities. I resolved to increase the range of things I could do without assistance, to work at becoming as independent as possible and, to the best of my ability, to avoid inconveniencing others. I thought that any aspirations outside this future were unrealistic because I was now where I belonged. I consigned any memories of my previous primary school to ancient history.”
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.