neurotribes
(2015)
@stevesilberman
http://stevesilberman.com/book/neurotribes/
The Legacy of Autism and the Future of Neurodiversity
A groundbreaking book that upends conventional thinking about autism and suggests a broader model for acceptance, understanding, and full participation in society for people who think differently.
by @stevesilberman
intro’d via Joi here:
Joi Ito (@Joi) tweeted at 12:16 PM – 6 Sep 2018 :
My latest column article – The Educational Tyranny of the Neurotypicals https://t.co/cccsBGigc6 via @WIRED (http://twitter.com/Joi/status/1037766430190706688?s=17)“Neurotypical” is a term used by the autism community to describe what society refers to as “normal.” According to the Centers for Disease Control, one in 59 children, and one in 34 boys, are on the autism spectrum—in other words, neuroatypical. That’s 3 percent of the male population. If you add ADHD—attention deficit hyperactivity disorder—and dyslexia, roughly one out of four people are not “neurotypicals.”
In NeuroTribes, Steve Silberman chronicles the history of such non-neurotypical conditions
on hold at library – thanks library
Joi Ito (@Joi) tweeted at 4:17 AM – 7 Sep 2018 :
A lot of this article was inspired by a conversation with @davemorin who is working on technologies and designs to help mental health with neurodiversity as a core value (http://twitter.com/Joi/status/1038008413580652544?s=17)
also adding nuerodiversity and dave morin
including autism, which was described by the Viennese doctor Hans Asperger and Leo Kanner in Baltimore in the 1930s and 1940s. Asperger worked in Nazi-occupied Vienna, which was actively euthanizing institutionalized children, and he defined a broad spectrum of children who were socially awkward. Others had extraordinary abilities and a “fascination with rules, laws and schedules,” to use Silberman’s words.
Kanner, on the other hand, described children who were more disabled. Kanner’s suggestion that the condition was activated by bad parenting made autism a source of stigma for parents and led to decades of work attempting to “cure” autism rather than developing ways for families, the educational system, and society to adapt to it.
i think that people w autism are born outside the regime of civilization. i think that as a result of all the killings in the world and the selfish planet wrecking .. a deep sense of crisis exists.. autism has somehow arisen out of this.. we are like travelers from the distant past.. and if , by our being here, we could help the people of the world remember what truly matters for the earth that would give us a quiet pleasure.
Our schools in particular have failed such neurodiverse students, *in part because they’ve been designed to prepare our children for typical jobs in a mass-production-based white- and blue-collar environment created by the Industrial Revolution.
perhaps *in total because they’ve been designed to prep w supposed to’s
I think that even the broad notion of education may be outdated, and *we need a completely new approach to empower learning: We need to revamp our notion of “education” and shake loose the ordered and linear metrics of the society of the past, when we were focused on scale and the mass production of stuff. Accepting and respecting neurodiversity is the key to surviving the transformation driven by the internet and AI, which is shattering the Newtonian predictability of the past and replacing it with a Heisenbergian world of complexity and uncertainty.
*ie: a nother way..
again.. higashida autism law
InLife, Animated, Ron Suskind tells the story of his autistic son Owen,
life animated.. ron.. owen
Owen’s story tells us how autism can manifest in different ways and how, if caregivers can adapt rather than force kids to “be normal,” many autistic children survive and thrive. Our institutions, however, are poorly designed to deliver individualized, adaptive programs to educate such kids
perhaps more important.. what they (everyone) has to help educate us ..again ie: higashida autism law
In addition to schools poorly designed for non-neurotypicals, our society traditionally has had scant tolerance or compassion for anyone lacking social skills or perceived as not “normal.”..t
lucas on not normal ness
i think that people w autism are born outside the regime of civilization. i think that as a result of all the killings in the world and the selfish planet wrecking .. a deep sense of crisis exists.. autism has somehow arisen out of this.. we are like travelers from the distant past.. and if , by our being here, we could help the people of the world remember what truly matters for the earth that would give us a quiet pleasure.
Temple Grandin, the animal welfare advocate who is herself somewhere on the spectrum, contends that Albert Einstein, Wolfgang Mozart, and Nikola Tesla would have been diagnosed on the “autistic spectrum” if they were alive today. She also believes that autism has long contributed to human development and that “without autism traits we might still be living in caves.” She is a prominent spokesperson for the neurodiversity movement, which argues that neurological differences must be respected in the same way that diversity of gender, ethnicity or sexual orientation is.
temple.. einstein.. mozart via rhodes.. tesla
Ben Draper, who runs the Macomber Center for Self Directed Learning, says that while the center is designed for all types of children, kids whose parents identify them as on the autism spectrum often thrive at the center when they’ve had difficulty in conventional schools. Ben is part of the so-called unschooling movement, which believes that not only should learning be self-directed, in fact we shouldn’t even focus on guiding learning. Children will learn in the process of pursuing their passions, the reasoning goes, and so we just need to get out of their way, providing support as needed
indeed
Many, of course, argue that such an approach is much too unstructured and verges on irresponsibility. In retrospect, though, I feel I certainly would have thrived on “unschooling.”..t
the problem isn’t that it’s unstructured.. it’s that not all of us are doing it and doing it 100% .. it needs to be all of us .. as the day ie: meadows undisturbed ecosystem
In a recent paper, Ben and my colleague Andre Uhl, who first introduced me to unschooling, argue that it not only works for everyone, but that the current educational system, in addition to providing poor learning outcomes, impinges on the rights of children as individuals..t
indeed.. but so too does calling it out w/o a mech/alt in place.. ie: costello screen/service law
suggested mech: tech as it could be.. w 2 convers.. as infra
Not that anyone should generalize from my experience—one reader of my dissertation said that I’m so unusual, I should be considered a “human sub-species.” While I take that as a compliment, I think there are others like me..t who weren’t as lucky and ended up going through the traditional system and mostly suffering rather than flourishing.
rather.. all of us.. and we can’t see it because we keep observing/researching ie: whales in sea world
We can also use modern technology for connected learning that supports diverse interests and abilities and is integrated into our lives and communities of interest.
true.. very thankful for that.. but today.. we can do better than that.. because/and.. it won’t really truly work until it’s all of us
At the Media Lab, we have a research group called Lifelong Kindergarten, and the head of the group, Mitchel Resnick, recently wrote a book by the same name.
The group believes, as I do, that we learn best when we are pursuing our passion and working with others in a project-based environment with a playful approach.
imagine playing in the city.. as the day..
Many mental health issues, I believe, are caused by trying to “fix” some type of neurodiversity or by simply being insensitive or inappropriate for the person. Many mental “illnesses” can be “cured” by providing the appropriate interface to learning, living, or interacting for that person focusing on the four Ps. ..t
indeed.. what we need most .. what will be the roots of our healing.. is the energy of 7bn alive people
Joi Ito (@Joi) tweeted at 5:39 AM – 7 Sep 2018 :
A few other notes as I get feedback. Some point out that modern education isn’t great for neurotypicals either. Also, there ARE great teachers out there and some great programs. Don’t mean to say we should scrap everything. We just need to upgrade and rethink a lot of it. (http://twitter.com/Joi/status/1038028930819780608?s=17)
moten abolition law.. but again.. only when we have a nother mech in place ..for 7bn to leap to
_________
book
notes/quotes:
forward – oliver sacks
steve always dug deeper, asked more penetrating questions he thought about things and made connections
i know of no one else who has spent so much time simply listening, trying to understand what it is like to be autistic..
neurotribes is a sweeping and penetrating history of all this, presented w a rare sympathy and sensitivity.. it will change how you think of autism..it belongs alongside the works of temple grandin and clara claiborne park, on the books shelf of anyone interested in autism and the workings of the human brain
intro
3
while the central focus of their lives was the work they did in solitude, they clearly enjoyed being w others who are on the same frequency. they were a convivial society of loners..
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it didn’t occur to me until much later that larry’s keen sensitivity to sound might provide a link between his daughter’s condition and the tribe of industrious hermits who invented the modern digital world
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1943
leo kanner – named their condition autism – from the greek word for self, autos – because they seemed happiest in isolation
then a year later, in an apparent synchronicity, a viennese clinician name hans asperger discovered four young patients of his own who seemed strangely out of touch w other people, including their own parents.. unlike kanner’s young patients in baltimore, these children spoke in elaborate flowery sentences while displaying precocious abilities in science and math.. asperger affectionately dubbed them his ‘little professors’.. he also called their condition autism, though it’s still a matter of dispute if what he saw in his clinic was the same syndrome that kanner described..
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as the mainstream world had a long argument about vaccines, newly diagnosed adults were engaged in a very diff convo about the difficulties of navigating and surviving in a world not built for them. by sharing the stories of their lives they discovered that many of the challenges they face daily are not ‘symptoms’ of their autism, but hardships imposed by a society..t .. that refuses to make basic accommodations for people w cognitive disabilities as it does for people w physical disabilities such as blindness and deafness..
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one of the most beneficial developments since the publication of ‘the geek syndrome’ 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 w distinctive strengths that have contributed to the evolution of tech and culture rather than mere checklists of deficits and dysfunctions.. .. turn out to be very old ideas, proposed by hans asperger in his first public lecture on autism in 1938
youtube 2007 .. amanda.. now amelia baggs.. ‘in my language’.. who find using spoken language difficult but can type 120 words a minute.. as she presses her face in to a book rubs her fingers across her key bard, flaps her hands, hums to herself and bobs a slinky up and down. a clinician would likely say that she is exhibiting self stimulating behavior. one of the classic signs of autism.. but in the second part of the video ‘a translation’ baggs makes clear that she is not sharing these intimate glimpses of her life as a plea for pity. her intent is more subversive: celebrating the joy of her existence on her own terms. ‘my language is not about designing words or even visual symbols for people to interpret.. it’s about being in a constant convo w every aspect of my environ.. t.. reacting physically to all parts of my surroundings.. far from being purposeless, the way that i move is an ongoing response to what is around me’.. her words are articulated by a text to speech program as if a machine itself is speaking, yet few clips on youtube offer a glimpse into a mind so profoundly humane..
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after just four days in autismland, the mainstream world seemed like a constant sensory assault..
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 seen coming to on their own for generations..
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it is not true that he (cavendish) wanted to remove himself entirely form the company of his peers; he just wanted to stand off to the side, soaking everything in..t
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partly owning to cavendish’s great wealth, his preference for solitude was often confused w arrogance, selfishness, or disdain.. but he was not nasty or vindictive.. he simply had no idea how to conduct himself in public…
he was not self absorbed; he was the opposite. he was wholly engaged in his study of nature, which provided its own form of communion – if not w the souls of other people, then w the hidden forces behind the visible face of things.. t
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yet the life of a tree climbing scientist can hardly be considered barren or bereft of fulfillment. he transformed his whole environ into a playground for his keenly focused senses and intellect.. no poet paid greater attention to his sensation than cavendish did to his..t
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his life was devoted to one single, all consuming passion: the slow and patient increase of the sum of human knowledge.. his mind was like a mirror held up to nature.. unclouded by bias, rationalization, lust, jealousy, competition, pettiness, rancor, ego and faith..
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by the first years of the 21st cent, the trade in high doses vitamins and supplements had become an econ powerhouse.. w annual sales topping 33 bn.. americans now consult their homeopaths, naturopaths, herbalists, acupuncturist, chiropractors and reiki workers more often than they see their primary care physicians. up to 3/4 of all autistic children in the us receive some form af alt treatment.. w dietary interventions often beginning even before their diagnosis..
after studying autism for decades mainstream medicine had failed to come up w a gold standard of treatment.. w/in the biomed community, however, there were dozens of next steps you could take..
shannon and craig decided .. first thing to do was stop vaccinating..
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one thing became clear: leo’s new regime was making him miserable.. continuous state of rebellion facing hourly swallowing of pills.. et al.. found out.. these dr’s pushed chelation no mater what.. so they quit going there
leo was no where close to recovery, but he was thriving in his own ways.. made a deep connection w his aba therapist.. w/in this supportive framework, kindness.. suggestion alternative ways to act, leo made progress quickly.. mastering dozens of tasks in a short time – ie: care for self.. communicate..
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in the shadow of the rising numbers, making peace w autism – by viewing it as a lifelong *disability that deserves support, rather than as a disease of children that can be cured – seemed like a new and radical idea.. in fact, it was the oldest idea in autism research.. but it had been forgotten..ie: everything he/she does.. is attempt at communication
*why a disability..?
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erwin lazar founded children’s clinic in 1911: instead of seeing children as flawed broken or sick, he believed they were suffering form neglect by a culture that had failed to provide them w *teaching methods suited to their individual styles of learning.. he had an uncanny knack for spotting signs of potential in every boy and girl no matter ho difficult or rebellious they were alleged to be
why *teach..?
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over the next five years, jekelius and his successors, ernst illing and heinrich gross, murdered 789 children at the facility, including 336 from the infants’ ward. most of these children had been diagnosed w feeblemindedness, epilepsy or schizophrenia – the three diagnoses that autistic children were most likely to receive in the days before autism was an accepted diagnostic category.. nonverbal patients were favored for extermination because they created extra work for the nurses; eventually children who were ‘simply annoying’ were added to the list… some killed by injections… some simply left outside.. exposed to harsh austrian winter.. parents would receive note that child died of natural causes.. often notes included bill for cremation or burial expenses
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kanner was learning a valuable lesson: the way t get head in psychiatry was to hold your tongue, even when your esteemed colleagues were speaking nonsense
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the scandal gave kanner a rare opp to focus the national spotlight on the vulnerability of disabled people in institutions and the pervasive lack of oversight in the mental health care system.. but that isn’t what he did.. instead, he portrayed the innocent victims of this ghastly scheme as a menace to their community.. born to feeble minded girls..
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his (kanner) home town of bordy had once been home to a vibrant community of 10 000 jews and was celebrated throughout europe as a center of learning philosophy, art, music and culture.. after the war, only 88 jews were left alive
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in most cases of schizophrenia the first signs become apparent only after puberty. the notion of nursery school age psychotics not only challenged the time tested arc of the natural course of the disorder, it subverted the psychodynamic theories in vogue at the time to explain its causation, which leaned heavily on the allege role fo ‘schizophreogenic’ mothers..
concept of schizo mother bloomed in a hot house of cultural anxieties in post ww1 era… when women who ha d been previously subservient and self effacing began cutting their hair short, smoking, demanding to vote.. taking jobs in field like ed formerly for men, replacing them as primary breadwinners..
so none of these are legit.. they’re symptoms of how we treat people
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in his text book, kanner quoted on clinician as saying, ‘if we wished, we could form as many groups as there were individuals’..
yeah that..
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as much as these children seemed remote and inaccessible to other people, they were keenly attuned to the smallest changes and asymmetries in their environ..t
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it was as if the children were constantly generating rules about how things should be based on how they were when they happened to come across them..t.. ie :putting cigar back in kanner’s mouth.. the most humble and ordinary day to day event became imbued w terrifying significance…
yeah.. let’s do that for all of us.. as the day
even in their awkwardness, irritability an intransigence, these children struck kanner as exceptionally beautiful.. he doted on their ‘strikingly intelligent physiognomies’ as if the face is not just a window to the soul but in to the wiring of the brain itself.. his belief in their cognitive potential was tremendously consoling to their parents..
kanner was under no illusions that the pattern he recognized in these children was a unique product of modern times..
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now instead of being starved and scoured w whips, children like this were being herded into gas chambers in germany, while in america they were exiled to he margins of society..
kanner knew there must be many more children like virginia, passing the empty hours in dayrooms and lockdown wards w/o anyone knowing who they really were.. ie: saying they were mute and deaf.. but then he’d hear them humming a christmas hymn.. after seeing 8 children who fit the pattern, he was ready o tell the world about his discover..
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trying to come up w set of criteria to make pattern visible to his peers.. he proposed two ‘essential common characteristics’.. 1\ self isolation from birth – extreme autistic aloneness 2\ fear of change/surprise – anxiously obsessive desire for the maintenance of sameness..
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it was the children’s behavior he was calling autistic.. not the children themselves..
kanner diverged radically from asperger.. kanner focused exclusively on first yrs of childhood, adults and teenagers out of picture entirely.. he saw diff characteristics as the same: solipsistic forms of self stimulation and nothing more..
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papers come out at time superiors turn focus of efforts from extermination of disabled children to .. annihilation of the jews..
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where asperger saw threads of genius and disability inextricably intertwined hi his patients’ family histories – testifying to the complex genetic roots of their condition and the ‘social value of this personality type’ as he put it – kanner saw the shadow of the sinister figure that would become infamous in popular cultures s the ‘refrigerator mother’..
he was an astute clinical observer and a persuasive writer, bu tin this case his errors in interpreting his patients behavior had wide reaching implications. by blaming parents .. kanner made his syndrome a source of shame and stigma for families worldwide.. while sending autism research off in the wrong direction for decades
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rather than innate.. that these children had been pushed into mental illness by their selfish, compulsive, and emotionally frosty parents, who tried to substitute poems and symphonies and catechisms and encyclopedias for the nurturing love they were unable to provide
for purposes of advancing field of child psych.. both theories had their virtues and drawbacks.. but.. a condition that was inborn could not be prevented – it could only be ameliorated
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2nd flaw in his conclusion.. that this was rare.. so many missed (?)
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kanner retracts innate ness in 1955.. include a number of children who reportedly developed normally thru first 18-20 months
1946 – laura bender.. ny.. described 100 children w schizo.. now considered classic signs of autism.. her accounts were closer to asperger’s and frankl’s
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in eerie preview of autism ‘epidemic’ 4 decades later.. the prevalence of childhood schizo started spiking in mid 10th cent.. by 1954 bender saw 850
if kanner’s syndrome was too narrowly defined.. child schizo had opposite problems.. 58 – children filled state hospitals and schools for mental defectives
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all sides conceded and from that point on (74ish?) terms autism, childhood schizo and childhood psychosis were used interchangeably.. kanner also yielded to the consensus of his colleagues on the role of parenting in autism..
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brutal to parents.. by 1948.. time ran article headlined ‘frosted children’.. it was clear he want’ going to be a stickler about insisting his syndrome was present at birth.. addressing colleagues at a conference in manhattan , kanner blasted his patients’ parents as cold perfectionists who barely had time to hug their children before rushing off to lab or next gallery opening.. it wasn’t that they mean to do their children harm, he said, it was that their idea of responsible parenting was ‘the mechanized service of the kind which is rendered by an over conscientious gas station attendant..’
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where kanner saw a refrigerator, bettelheim saw a concentration camp (he was in one and observed prisoners’ behaviors) with the mother as kommandant
his book – love is not enough..
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the assumption was simply not questioned, at least in public.. (that parents treatment of child had caused problem).. leading psycho theorist in america, david rapaport.. renowned devel psych erik erikson.. parents.. all believed it.. they also provided developmental histories that seemed to confirm that belief.. it was a close looped..
as kanner has done at yankton.. bettelheim instituted many reforms to humanize the institution he had inherited.. locks on doors changed so tha tone key opened all.. allowing counselors to look less like jailhouse guards.. took down funeral black curtains covering windows.. swapped machines for pin pon table.. children who wet beds no longer punished.. design of the facility was to serve the psycho needs of children.. not logistical convenience of staff.. .. instead of bunk beds.. wooden beds w matching dressers.. art on walls..
others wrote of darker view of life in the school.. depicting bettelheim as tyrant who struck children.. et al..
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bettelheim’s book – the empty fortress.. widely and enthusiastically reviewed.. for many first intro to subject.. .. referred to autism as ‘an illness, a suicide really, of the soul’..
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his staff knew his claims were hyperbolic at best… treatment was a failure.. but .. we (sanders) did not view it as evidence that might be working w wrong premises..
sanders takes over in 1970.. once child place din state hospital.. no longer treated as a child.. as an adult
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bender’s preferred method of treatment at bellevue was electroconvulsive therapy.. 20 courses or more.. which she claimed boosted their iq.. improved body image.. made them more normal.. .. to supplement ect.. bender also employed subcoma insulin shock and metrazol, a drug that produces convulsions.. (lists other awful drugs/effects).. also lsd..everyday for 2 months.. to 54 aged 6-15.. she reported it made patients more awre.talkative.. reality oriented.. though also increase in anxious and depressive attitudes..
age before informed consent.. so virtually unmonitored..
dang.
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gifted loners – aspergers
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these children only decisively withdrew from interactions w adults at the center when they figured out that they weren’t really interested in what they were saying..
kanner – in autism group.. circumscribe interest often foisted on them by parents..
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start finding ways to put autistic intelligence to work rather than obsessions inflicted by parents..
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kanner told research bernard rimland (in epilogue).. that he turned away 9 of 10 children referred to his office as ‘autistic’ by other clinicians w/o an autism diagnosis..
in real world terms.. meant being denied access to an ed, speech and occupational therapy, counseling meds.. et al.. kanner’s insistence that autism was disorder of early infancy meant decades of wandering in the wilderness w no explanation for constant struggles in employment , dating friendships and simply navigating the chaos of daily life..
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while psych establishment was dealing w theories of toxic parenting.. asperger’s lost tribe was putting its autistic intelligence to work by building the foundations of a society better suited to its needs and interests.. refused to accept circumstances as a given.. sketched out a blueprint for the modern networked world..
223 – princes of the air
the curious fascination that many autistic people have for quantifiable data, highly organized systems and complex machines runs like a half hidden thread thru the fabric of autism research.. asperger may have been first clinician to notice that his patients’ imaginations occasionally anticipated development in science by decades..
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if his prophecies were unusually accurate – it was because he befriended someone already living in the future: nikola tesla
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whatever tesla was, the word typical didn’t describe him.. eccentric genius ran in his family.. his older brother was child prodigy who died when tesla spooked the horse he was riding, causing lifelong feelings of guilt.. he suffered ..what would likely now be diagnosed as epilepsy .. marked by visions of strong flashes of lights and elab hallucinations.. as a child.. he could be honest to a fault..
‘i needed no models, drawing, or experiments.. i could picture them all as real.. ‘ – tesla on his inventions.. much like temple grandin
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pulp fiction and fandom
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obviously fandom was a community that was unusually accepting of individual quirks and differences..
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late 1950s – john mccarthy at mit – offers first undergrad computer programming.. instead of seeing them as adding machines.. he pondered ways of programming them so they could act in creative ways, learn to adapt to environ.. be linked in complex networks and evolve to become smarter on their own.. to describe this dynamic vision of computing, he coined the term ai
perhaps the ai humanity needs.. augmenting interconnectedness
https://en.wikipedia.org/wiki/John_McCarthy_(computer_scientist)
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his colleagues confirmed this: his mind is a vehicle streamlined for rapid passage thru the fluid of thought, capable of maneuvering w little outside friction.. but i the ope social terrain, his streamlined concentration becomes awkward and unwieldy
who’s to say..? the ie’s given.. ask him a question.. he may just walk away w/o a word.. come back in a few days w answer.. like no time in between..
isn’t that what a convo should be..? never finished..? 9 (shaw communication law)
i wish we could take a break from all this philosophizing and labeling and history izing.. and focus on getting us back in sync.. all of us.. we’re wasting so much tim/energy analyzing each other
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mit building 20 was nicknamed ‘the magical incubator’.. late 50s hacker culture..
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60s.. mccarthy ready for change.. offered job at stanford.. sold house in cambridge to two young harvard profs.. proofing a tool for hacking the operating system of the human brain: lsd.. timothy oleary and richard alpert..
mccarthy had no need to seek out a diagnosis because he was able to carve out a niche in an emerging field that was perfectly suited to his strengths while being tolerant – indeed appreciative of his many eccentricities..t
imagine that for 7bn..
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mccarthy’s labs at mit and stanford were lab playgrounds for his extraordinary mind.. as cavendish’s estate on clapham common was for his own.. as well as ie: steve jobs and steve wozniak..
ultimately future of computing belonged not to big iron mainframes and networks of ‘dumb terminals’ that mccarthy loved but to smart little machines that member of the homebrew computer club were soldering together in their garages..
the task of claiming the power of the computing of the many remained to be done by internet pioneers like – vint cerf and tim berners lee.. and an autistic engineer who launched the first social network for people in a record store in berkely.. lee felsenstein.. radio et al..
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felsenstein inspired by father’s work of org ing neighborhood council to reform zoning laws.. he joined anti nam war movement.. admin clamped down.. when campus police arrested a civil right activist for refusing to show his id.. 3 000 enraged student surrounded the car and prevented it from moving for 36 hours until the charges were dropped..
64 sit in.. anti war protesters.. mario savio: ‘there’s a time when the operation of the machine becomes so odious, makes you so sick at heart, that you can’t take part. you can’t even passively take part. and you’ve got to put your bodies upon the gears and upon the wheels .. upon the levers upon all the apparatus and you’ve got to make it stop‘.. t.. that night nearly 800 students were carted off to jail..
the free speech movement adopted felsenstein, then 19, as its geek in residence.. one night.. police surrounded campus.. one of organizers turned to felsenstein and said ‘quick build us a police radio..
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‘ he knew it wouldn’t be that simple, but that moment was a revelation fo felsenstein..’ realize i had made a mistake about my position in society. up to that point, i was waiting for orders from highly intelligent people who knew much more than i did about politics, sociology and other subjects.. but then i realized that these people had no clue about what was actually possible w tech.. that was my job: .. t.. knowing what was possible and saying, ‘well, you can’t have that, but you could have this instead’.. so instead of waiting for orders, i started defining what was technologically possible’
it occurred to felsenstein that if counterculture was serious about building a new society that was not based on mass consumption and vacuous spectacle. it would have to design new forms of media tha empowered individual and local communities instead of relying on old broadcast models.. the decentralized, user driven future of computing was already taking shape in his mind..t
felsenstein didn’t know yet he was autistic.. as far as the psychiatric est was concerned.. people like him didn’t exist.. he just knew that his girlfriends often complained that he didn’t respond appropriately in social situations and that he never felt at home among people..
by 1968, the stress of being an undiagnosed autistic in the middle of a cultural revolution had taken a heave toll ..ended up leaving uni for ampex
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leaves unit for ampex
while at ampex meets up w doug englebart
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engelbart and mccarthy opp sides of campus .. mccarthy wanted to design machines that were powerful enough to replace human intelligence.. engelbart wanted to figure out ways of using computers to augment it..t
ai as augmenting interconnectedness
concepts of engelbart’s presentation (mother of all demos).. refined by work of alan kay and others at xerox parc.. inspired steve jobs to build the macintosh.. first personal computer designed for mass market..
bugged felsenstein that valuable info was perpetually getting lost..
illich conviviality..
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w two fellow programmers name efrem lipkin and mark szpakowski, he began exploring ways of augmenting the community switchboards ..
hacker subculture incubated at mit was thriving in places like sail, xeros, parc, and now legendary garages of Cupertino and san jose.. soon whole earth catalog impresario stewart brand would unleash this subvulteo
street brand: ‘computers are coming to the people. that’s good ness, maybe the best since psychedelics’..
for people who struggle to express themselves in f to f situation .. computer networks held the potential for not just ‘augmenting’ communication but making it possible period.. minus the stuff that normally made convo so arduous such as eye contact, body language, tone and the necessity for making good impression
2 convers.. as infra .. beyond words
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as a kid i had a feeling that i was ensconced in some sort of alcove, behind a wall, and that the street was out there.. felsenstein recalls.. ‘i could see everyone else walking around engaging in life, but i couldn’t go out there.. so what i was doing g w community memory was trying to expand the alcove….t
imagining doing this w community cure ios city
ie: hlb via 2 convers that io dance.. as the day..[aka: not part\ial.. for (blank)’s sake…].. a nother way
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felsenstein came to think of his asperger’s as more than just a set of deficits, but as his ‘edge’ he edge he inherited from his grandfather
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fittingly the man who consigned the theory of toxic parenting to he dustbin of history was the loving father of an autistic boy himself.. bernard rimland.. he firmly established autism as an inborn condition based in genetics and neurology rather than the complexities of the developing psyche.. helped end decade of shame and isolation
ironically, rimland bitterly opposed the notion of autism as a continuum at first.. like his hero, leo kanner. . but her ended up diverting the energy and focus of the parents’ movement he helped created into an endless quest for a cure
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rimland and his book ending parent shame and putting kids in institutions.. granting them an independent existence outside the usual accounting of deficits and dysfunctions.. ‘it is interesting to conjecture that the silent, unreachable autistic child’ he wrote ‘may indeed by lost in thought’
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autism represented a potential for genius that has been derailed somewhere along the line – ‘brightness gone awry’ as rimland put it ‘ we must give serious consideration to the hypothesis that an infant’s road to high intelligence lies along a knife edged path and the higher the potential intelligence, the steeper and more precarious the slope
the seeds of this idea were present from the start in asperger’s description of his patients’ parents as brilliant eccentric, but despite rimland’s team of translators, his paper wasn’t cited in the book’s comprehensive bibliography – another sign of how thoroughly erased it has been from history..
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by forging a direct connection w the parents who wrote to hm, rimland ended up takin ga much more subversive path that directly *challenged the authority of the psychiatric est.. instead of becoming the gold standard fo autism assessment, rimland’s questionnaires planted the seeds of a revolution
*of course.. just like school
parents determined to raise their sons/daughters at home, like clara claiborne park (mother of jessy park) and eustacia cutler (mother of temple), were condemned for endangering their welfare by trapping them in a psychically toxic environ..
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rimland was skeptical of the lovaas method when he first hear about it: ‘the technique seemed much better suited to training dogs or seals than people’.. (firm.. ie: locking in closet rather than rewards.. said he could have trained hitler to be good).. but after seeing the psychologists footage of self mutilating children before and after aba, he set his doubts aside and began scheming about ways that the technique could be exported from the lab.. if grad students could be schooled in the art.. why not parents..?
‘to my wife’s horror, i began to us lovaas’s techniques in training our very difficult 8 yr old son’ rimland in 1987.. ‘i realized that the extremely permissive, indulgent attitude toward autistic children which had been fostered by previous authorities in the field of autism was in fact terribly damaging to the children.. i used behavior modification to ‘shape up’ my son.. ‘
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lovaas compared behavior engineering to the techniques employed by anne sullivan to teach helen keller to talk ..
working alone, both men were vulnerable to the kind fo marginalization face by any researchers who attempt to subvert the dominant paradigms in their field.. by forming an alliance and reaching out directly to parents, they gained a level of credibility and influence far beyond what they could have achieved by waiting for confirmation of their theories thru the usual peer reviewed channels.. t.. together, they would build an empire of their own: a shadow infra for autism research in which parents, rather than med professionals, were the ultimate authorities on their children’s well being..
good thinking there.. (except the earlier closet et al stuff)
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instead of pumping him full of drugs..this wise physician(thomas addis) had healed him (linus pauling) by manipulating levels of compounds – water, vitamins, minerals, protein, and salt – already present in his body.. pualing dubbed his approach orthomolecular medicine (from greek root orthos – upright/correct) and came to believe that it had potential for curing a broad range of maladies from schizo to cancer..
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up to 1966 talking typewriters .. the erels.. helped autistic kids to learn things on own..and to communicate..
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1967.. amy lettick opened a school called benhaven in connecticut.. housed in a 22 room tudor mansion on a hillside in new haven.. classes, swimming.. 35 acre farm.. gardens..chickens.. kitchen.. laundry room..
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lettick realized that too much emphasis was being placed on teaching autistic children to speak, when what was truly essential was enabling them to communicate.. using sign, student who had previously been unable to learn to read and write were able to do so
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the next time that sacks saw the twins, the were raptly enjoying a convo that consisted solely of numbers.. in a case history published 20 yrs later in the man who mistook his wife for a hat, sacks wrote that the brothers.. looked like ‘two connoisseurs wine tasking, sharing rare tastes, rare appreciations..
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using his acute powers of observation, sacks came to realize that, instead of being in incommunicative, his patients were communicating all the time – not in words, but in gestures and other nonverbal forms of utterance,
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the rain man effect – kim peek story.. ie: originally hoffman as brother and bill murray as raymond (p 367) but hoffman wanted to play raymond
from top documentary (site) page: 29\ kim peek: the real rain man – i love watching him flower..what kim represents is dark side of the moon.. we know more about moon than brain
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hoffman: ‘all my life i had wanted to get inside a prison or a mental hospital, like most kids want to go to a zoo… i wanted to get inside where human behavior was so exposed.. all the things the rest of us were feeling and stopping up were coming out of these people, as if thru their pores..’ .. t
as oliver sacks was doing at bronx psychiatric .. hoffman would play piano to entertain the patients, and the dr particularly loved it when he sang ‘goodnight irene’ one day he began singing along when his wife walk in .. suddenly the dr stoop up, met his wife in the middle of the room and began to sob… a moment of stark lucidity crossed his face. ‘i can’t, i caaan’t’ he moaned
hoffman broke down crying too, and he quit the institution shortly after that. when he read morrow’s script for rain man, memories of that moment came flooding back to him
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morrow had never even heard the word autism when he wrote the fist draft of rain man. hoffman was instrumental in making the character of raymond specifically autistic rather than just intellectually disabled..
two psychologists offered feedback on morrow’s script.. one was bernie rimland.
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in 86.. hoffman read temple grandin’s emergence and sought out the author who told him that the one thing she wanted more than anything else in life was for someone to hug her – but the moment that any one did, she couldn’t bear it. .t..’that sentence just destroyed me’… hoffman said
@DrTempleGrandin
he also made a pilgrimage to oliver sacks’s house on city island.. after visiting one of sacks’s patients in the hospital, they headed to the ny botanical garden, where hoffman trailed a few yards behind as (sacks) chatted w a member of the actor’s entourage. ‘suddenly i though i heard my patient’ sacks recalled. ‘i was extremely startled and turned round and saw it was dustin thinking to himself, but thinking w his body, thinking enactively, thinking of the young autistic man he had just seen’..
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peek went down in history as ‘the real rain man’ (title of book written by his father) .. but that was a benign white lie that enabled the filmmakers to keep the id of a second family in rimlands’ network secret.. in truth, raymond was a composite of joe sullivan and a young man in ny name peter guthrie.. whose distinctive shuffling gait, bemused tilt of the head and verbal tics (uh oh.. definitely.. and ..of course).. became central to hoffman’s conception of the character..
while peek reveled in all the attention he got after the film came out, peter had no interest in becoming a celebrity.. when mutrux contacted his family, he told his parents, ‘i don’t want my name becoming a household word. i definitely don’t want my name in usa today’.. but he agreed to be part of hoffman’s research and mutrux lent his brother kevin a movie camera so he could film peter at home..
robert and becky guthrie fit kanner’s descriptions of gifted and highly accomplished parents to a t, minus the lack of affection for their children.. robert was a 4 star general who served as the army’s project officer for the launching of the first american satellite in 1958.. he went on to oversee the development of the black hawk helicopter and the patriot missile.. becky was a first gen autism ‘mother warrior’.. kevin, a few yrs younger than peter, was a college football star who bore more than a passing resemblance to tom cruise.. after rain man, he went on to launch jstor, a digital archive of journals and other research material that now serves 8 000 institutions in more than 160 countries..
aaron et al
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knew something was wrong w peter when he was just a few months old.. when he glanced at his mother, she felt that he was looking straight thru her.. several drs’ diagnosed him as severely retarded, but just before he turned two, ..reached for a magnetic letter board and spelled out esso, grecian bread, and smirnoff vodka.. soon assembling puzzles upside down.. drawing maps of us to scale freehand and cutting letters of identical width out of construction paper w/o a ruler.. he communicated w his parents by spelling out words rather than saying them, like ‘c h e e r i o s’ (for two yrs he ate nothing but cheerios) a child psychiatrist at walter reed army med center finally diagnosed him w autism..
instead of treating peter’s passions for letters, numbers, and order as pathological, becky encourage them.. a decade before most people thought about buying a personal computer, he was using one to cut down the clutter in his room..
hoffman and cruise met the guthrie bro’s at the carlisle hotel in manhattan on valentine’s’ day 1987.. peter knew all about their films.. but couldn’t recognize faces.. after a stiff 2 hr meeting.. kevin said.. have to go bowling to get peter to relax
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the process of helping hoffman develop the character and generally being regarded w respect by people other than his family, had a beneficial effect on peter.. ‘people began treating him more seriously – as more than just this bizarre guy’ kevin recalls.. ‘he became more willing to be social. i saw him reach inside himself and pull out emotional responses that i didnt’ know he was capable of . he enjoyed showing off what he could do’..
to ensure the dialogue in film rant true.. hoffman called kevin regularly to read him the day’s scenes and ask him what his brother would say..
also kept ruth sullivan on speed dial ( for joe’s reaction to things).. all of that stuff came from me making calls 10 min before we started shooting’ mutrux recalls..
the one major way the film departed from real life was that joe sullivan and peter guthrie – like bill sackter and kim peek – were fully capable of living out side of institutions w the help of their families… in face, it’s highly unlikely that any of them would have developed their impressive skills and abilities had they been condemned to place like wall brook, the institution depicted in the film..peter lived in his own apt in princeton w a roommate, shopped and cooked for himself, manage a bank account and regularly took the train to see his parents in virginia.. for the past four decades, he has quietly worked as a reference librarian a the university.. joe had never lived in an institution, because his parents fought hard to make a space for him in the community..
but mutrux’s experts were adamant tha few autistic peoplewould be able tot survive outsideinstitutions.. ‘
the happy ending in the original script is simply not realistic’ wisconsin psychiatrist darold treffert, the worlds’ leadingexpert on savant syndrome , wrote in his book islands of genius.. though rimland never considered putting his son mark in an institution he insisted that a state home like walbrook were the only appropriate places to house people like raymond babitt..
?
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ironically, while raymond was widely referred to in the press as ‘high functioning’ and ‘one of the lucky ones’ when the film came out, he was portrayed as less capable of living independently than any of the real life models on which his character was based…
livinson – who made an uncredited appearance in the film as raymond’s psychiatrist – insisted that the poignancy of him going back to wallbrook would be more dramatically satisfying for the audience. though morrow made sure that sackter never had to go back to faribault, he has made peace w the ending of ran man. ‘i felt betrayed politically, but artistically, it was a triumph’ he says
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by putting one autistic person on the screen, teh filmmaker had made innumerable others visible.. to their loved ones, to their neighbors, to their teachers and drs and to themselves..
at a press conference.. hoffman broke down crying, saying that the film ‘touches something in us that i can’t explain. we all go thru life not hugging quite as much as we’d like to.. something cuts us off.. we’re always keeping a lid on our own autisms’..t
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in yr before film.. fewer than a hundred stories on autism had been published in major newspapers in the us.. following year.. that number quadrupled.. it would never decline again..
after hoffman thanks peter guthrie at the academy awards .. the washingtonian ran an in-depth story on him called ‘dustin and me’.. (he had warmed to the idea of his name becoming a household word)..
people ran a spread on joe sullivan.. that described his mother’s fight for his ed.. the handsome soft spoken young man went on to make appearances on oprah.. the larry king show.. disney co..
a few months later ruth sullivan attended a family wedding in pittsburgh.. during rehearsal joe was on his own for supper in a strange city, which normally would have been a cause of great anxiety for her..
ruth asked the hotel doorman if he could help her son find a place to eat close by, adding that because joe was autistic, he might not seem to be listening to his directions.. the doorman’s eyes lit up.. ‘like rain man’ he said.. she watched as the two men crossed the street into a world that had been transformed in a very short time. ‘one film did that. one film did more for autism than all of us working together worldwide had been able to do in 25 yrs’.. t.. she says..
thinking of deeyah’s films white right and jihad
and mufleh’s humanity law: we have seen advances in every aspect of our lives except our humanity – Luma Mufleh
but rain man was just the beginning..
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boost to the movement was provided in 1975 by another hollywood blockbuster: one flew over the cuckoo’s nest.. the pressures exerted by these groups – and the idiosyncratic mind of spitzer himself – reframed the dsm in a way that reinvented psychiatry as the front end of the pharmaceutical industry rather than the arcane art of soul healing akin to shamanism, that it had been
oy
Jon Ronson‘s the psychopath test et al
the key word in spiters’ mind as he undertook the revision in 1974 was reliability – the ability to produce consistent replicable results
spitzer was less tolerant that his predecessors of approaches to therapy that promised much and delivered little in the way of practical improvement in patients’ lives
who’s defining improvement..?
crazywise et al
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powerful drugs like chlorpromazinen were proving more effective than talk therapy in pacifying ‘difficult’ and ‘agitated’ patients, but pharma co’s saw few blockbuster opps in targeting afflictions like ‘hysterical neurosis’ and ‘adjustment reaction of adolescence’ (described as irritability and depression associated w school failure and manifested by temper outbursts, brooding and discouragement’)
oh my
allen frances: on spitzer ‘he doesn’t understand people’s emotions. he knows he doesn’t. but that’s actually helpful in labeling symptoms. it provides less noise’
inclusion of infantile autism in dsm 3 in 1980, marked kanner’s moment of triumph.. 1\ lack of responsive ness to other people 2\ resistance to change..
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age of onset was specified as ‘before 30 months’ in keeping w this theory that his syndrome was present from the start, which rules out virtually all the kids who would later be diagnosed w asperger’s syndrome..
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after release of (specifics) of dsm3 and dsm 3- r (1987).. increase in autism .. result of better recognition.. a sign that the system was finally working..
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tony attwood – one of world’s leading authorities on aspergers:’ the cure for aspergers’ syndrome is very simple – it is not surgery, medication or intensive therapy.. it is taking your son/daughter to their bedroom, leaving the bedroom and closing the door. you cannot have a social deficit when you are alone. you cannot have a communication problem when you are alone. you r repetitive behavior does not annoy anyone when you are alone. .all the diagnostic criteria dissolve in solitude.. that’s why teenagers w asperger’s are reluctant to leave their bedroom for school: the signs of autism, and the degrees of stress and withdrawal are proportional to the number of people present’
whoa
left to own devices, robert might not have experienced himself as mentally ill at all. though he certainly could have developed an anxiety disorder from being perpetually grilled by men w clipboards.. given a tech that enabled him to communicate w other like minded young people, he might have encouraged them to feel that their problems originated not in themselves, but in the system that had branded them diseased and inferior..t
because.. grammatis broken law
considerations like this in psychiatry are usually left to sociologists, but they would come back to haunt the editors of the dsm 4 once the criteria for asperger’s syndrome were set loose in the wild. few members of volkmar’s subcommittee could have predicted that the term aspie would become a badge of honor and defiant pride w/in a decade.. even for those wo an official diagnosis. the genie of autistic intelligence was posed to escape the bottle in which it had been trapped for 50 yrs
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chair of dsm 4 task force.. allen frances.. was wary of the rampant proliferation of labels and disturbed by his colleagues’ apparent willing ness to pathologize eccentricity.. but seeing his job as that of being a ‘consensus scholar’ he deferred on the subject of autism to the expertise of volkmar and his colleagues, who reassured him that the changes planned for the 4th edition (1994) would not result in any major upheaval.. in the end.. more families gaining access to services.. of 94 new diagnoses proposed for 4th edition of the manual, only two, asperger’s and type 2 bipolar disorder – would make the cut..
dsm 4 was an international smash that earned 18 million in its first 10 months in print alone and 100 m altogether while launching a thriving industry of branded tie ins and lucrative subsidiaries.. dsm 4 casebooks, study guides, video tapes and software.. ..spotting the signs of autism ..became the job of nearly everyone involved in pediatric medicine, psychology and education..
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in 14 yrs.. dsm had gone form a slim volume that sat unread on dusty shelves in institutions to a 900 page behemoth that found its way into classrooms, courtrooms , community clinics, research labs, congressional hearings, pharma stockholders’ meetings, social service agencies, and guidance counselors’ offices..
entire clinical infra of autism had been transformed form a channel for optimal reporting of isolated cases to a network of active surveillance of the general population..
fateful typo .. ie: substituting word or for and .. went uncorrected for 6 yrs.. for pdd nos
PDD–NOS stands for Pervasive Developmental Disorder-Not Otherwise Specified. PDD–NOS was one of several previously separate subtypes of autism that were folded into the single diagnosis of autism spectrum disorder (ASD) with the publication of the DSM-5 diagnostic manual in 2013.
volkmar found that ‘about 75% of children id’d as not having the disorder (true negatives) were incorrectly id’d as having it according to dsm 4’.. would go down in history as mysterious ‘autism epidemic’.. not aware till 2008 in roy richard grinkers book unstrange minds..
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poisoned from foster grant ‘s giant plastic injection plant along the nashua river… disproportionate number of parents of autistic children – 1 in 4 – had suffered occupational exposure to toxic chemicals..
and then woburn water.. miscarriages et al.. toxic waste dump
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exposure o thalidomide, an over the counter drug used in the 1960s to relieve morning sickness in pregnant women that resulted in 10 000 cases of babies being born w serious malformation of the limbs, had been linked to autism in numerous studies over the years..
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1992 landmark 20/20 broadcast.. ‘the street where the lived’
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in aftermath of leominster scandal.. other ‘autism clusters’ started popping up all over the country..
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considering the potential impact of environ factors on autism was nothing new for rimland.. (67 – dpt vaccine et al)
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dpt: a shot in the dark was much more than an expose of the risks of a vaccine.. it was scathing critique of the whole apparatus of mainstream medicine.. including the process of peer review and the use of placebo controlled trials in drug testing..
sicko .. forbidden cures.. healing (roots of).. cancer.. et al
the notion that children w learning disabilities are damaged goods runs thru the book: the authors refer to them as ‘vaccine-injured’ instead of dyslexic, autistic.. portray them as helplessly entombed inside their own bodies.. public uproar to 1986 national childhood vaccine injury act.. set up federal vaccine industry compensation program..
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though autism barely mention in a shot in the dark.. it was the central subject of his ..coulter (author).. next book.. vaccination, social violence and criminality.. in which he proposed th rising rates of autism, homosexuality, obesity, dyslexia, adhd, drug abuse, epilepsy, juvenile delinquency and spree killings were all expressions of an epidemic of encephalitis caused by mandatory vaccine programs (also said aid from heavy consumption of meds)
1995 – rimland watching talk show where several mothers referred to coulter ..looked into it.. came to believe that coulter had found the elusive solution to the puzzle of the rising autism rates.. rimland’s endorsement gave coulter’s fringe theories about autism, encephalitis, and vaccines a reach they would never have had otherwise.. while effectively laundering them of their more unsavory aspects.. such as his association of autism and criminal behavior.. (by then coulter moved on.. develop a vaccine derived from human placenta that would treat cancer)
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wakefield 1998 – ‘our study suggests tha exposure to measles virus in utero is a major risk factor for the development of crohn’s disease later in life..’ became respected figure among antivaccine activists.. – hushed because of vaccine that saved millions of lives
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wakefield christend syndrome ‘autistic enterocolities’..
the concept of opioid peptides disrupting brain devel was not new.. particularly among the clinicians and science savvy parents in rimland’s network who had dubbed the same phenom ‘leaky gut syndrom’..they had been frustrated for years that their observations of their children’s gastrointestinal distress and fussy food preferences were generally dismissed by drs as just another inexplicable aspect of a mysterious condition..
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many found removing grains and milk..
the fact that modern med is built on trade offs.. of socially acceptable risks (most lifesaving drugs have serous side effects, and every major surgery or anesthesia is potentially fatal) is precisely why coulter favored homeopathy.. while it may never cure, it also never kills directly..
the most novel aspect to wakefield’s paper was the supreme confidence w which he turned this confluence of disparate phenomena into a theory of autism causation..
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press coverage sent shock waves thru autism parents’ and far beyond.. for rimland, he wakefield study was the smoking gun he’d been waiting for.. in the coming years, many members of his network would become convinced that autism was the product of multiple insults to a child’s developing brain from vaccines, vaccine preservatives or both..
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a visionary dr backed by an army of warrior moms going up against a conspiracy between big pharma and govt officials.. irresistable.. in nov 2000 wakefield appeared on 60 min to blame the mmr for triggering an epidemic of autism..
rates of immunization of measles, mumps and pertussis began to fall worldwide.. for parens in countries where these communicable disease were rare, nursing a kid thru a week of the measles seemed lie a small price to pay.. some began holding pox parties.. to intentionally expose children
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the most insidious effect of wakefields’ case study and the firestorm of controversy that followed.. was hijacking the movement created by parents.. fears of epidemic have also skewed the direction of autism research
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but now.. autistic people are taking control of own destinies, w help of parents who no longer believe that what their children need most is a cure..t
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1989 – temple grandin becomes well known
my mother and teachers wondered why i screamed. screaming was the only way i could communicate.. then she pointed out the inadequacy of existing empirical methods for capturing the sensory sensitivities at the core of autistic experience.. t
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grandin proposed that people w autism, dyslexia and other cognitive difference could make contributions so society that so called normal people are incapable of making..t
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sacks on grandin (after spending time with her).. he presented her in full breadth of her humanity – capable of joy, whimsy, tenderness.. passion about her work, exuberance, longing, philosophical musing on her legacy and sly subterfuge… he acknowledged the prevailing theory that autism is ‘foremost a disorder of affect, of empathy’ but also explored her deep sense of kinship w other disabled people and whit animals.. whose fates she saw as intertwined in a society that views them both as less than human
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not until reading grandin’s emergence did she have a name for what was happening to her: it was as if my whole personality were contained in the pages of that book’
on hold
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he realized that the same behaviors that had been viewed for so long as inherently antisocial could become social in a group of autistic adults, particularly if there were no clinicians around to pronounce them pathological..t
in her next book, somebody somewhere, williams compared her visit to st louis to finally coming home. ‘together we felt like a lost tribe. normal is to be in the company of one like one’s self.. we all had a sense of belonging, of being understood..’
for sinclair, the relaxed environ of their interactions marked his first experience of being in ‘autistic space’ as he put it.. soon he would begin building safe space for autistics on a frontier so new that most people were barely aware that it existed: the internet..t
spaces of permission w nothing to prove
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(sinclair had heard a speaker talk of mourning.. and submitted a talk – don’t mourn for us.. it was rejected .. saying grandin had submitted same).. he (sinclair) pointed out that if grief goes on too long, it transmits a dangerous message to the child: that they are inadequate as they are:
this is what we hear when you mourn over our existence. this is what we hear when you pray for a cure. this is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.. – jim sinclair..t
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attending the first autreat w her 6 yr old.. ‘it was immediately clear to me that elijah and i were involved in a grand experiment. i would walk where he wished to walk. i would play whatever games he wished to play for as long as he liked. i would lie around w him in our cabin for hours, listening to pinocchio. there were no other responsibilities’
spaces of permission w nothing to prove.. alongside ness
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a new idea was brewing at events like autreat and in the myriad of autistic spaces taking root online. it turned out to be an idea as old as asprerger’s notion that people w the traits of his syndrome have always been part of the human community, standing apart,quietly making the world that mocks and shuns them a better place.. t
late 1990s a student of anthropology and sociology in australia named judy singer, who possesses may of those traits herself, gave that idea a name: neurodiversity
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harvey blume.. ‘neurological pluralism’.. he was first mainstream journalist to pick up on the significance of online communities for people w neurological differences. ‘the impact of the internet on autistics may one day be compared in magnitude to the spread of sign language among the deaf’ – blume.. t
it was in these talks w blume she (singer) came up w term neurodiversity..
singer explained to author andrew solomon in 2008.. ‘to do for neurologically diff people wha feminism and gay rights had done for their constituents’.. her thesis: odd people in..
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blume (1998): ‘neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general.. who can say what form of wiring will prove best at any given moment’…
in his view, it wasn’t just that more autistics were becoming visible in the world, but the world itself was becoming more autistic – and this was a good thing.. t
ie: 2004 – alex plank and dan grover launch wrong planet.. one of first autistic spaces on www…
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plank’s personal heroes: einstein, him henson, miles davis..
on wrong planet.. grover: ‘the goal is to alleviate those w aspergers’ from this pressure that they need to conform .. what is best is to learn how to use your uniqueness to your advantage and find your place in the world..
really kicked off when interview w bram cohen – the autistic creator of bittorrent.. a p2p file sharing protocol estimated to account fora 1/3 of all internet traffic in the us.. new members poured in by the 1000s
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could an aggregation of loners become a movement..
december 2007 a series of ominous billboards appeared on street corners.. and telephone kiosks in manhattan.. looking like a ransom note, one of the ads read, ‘we have your son. we will make sure he will not be able to care for himself or interact socially as long as he lives. this is only the beginning.’ another warned: ‘we have your son. we are destroying his ability for social interaction and driving him into a life of complete isolation . it’s up to you know.’ the first was signed ‘autism’ and the second ‘aspergers’ syndrome’.. sponsored by nyu’s prestigious child study center.. in words of centers’ press release, 12 m children in america were being ‘held hostage by psych disorder’..’it’s like w aid’.. harold kopleqicz – center’s director – told the nyy
but then something unexpected happened.. a fledgling org called the autistic self advocacy network (asan) along w equally outrage parents, launched a firestorm of emails an blogs in nyu’s direction objecting to the demeaning wording of the ads.. koplewica: ‘no plans to back down.. i thought we’d be fighting ignorance.. i didn’t think we’d be fighting adult patients’..
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in fact, ..what had happened .. for first time in history .. autistics were challenging a convo about autism in mainstream media w/o the help of a parent run org that claimed to speak for them.. the architect of the protest was not a child a parent, or an ‘adult patient’.. but a smart, savvy and determined policy wonk named ari ne’eman.. the 19 yr old co founder of the asan
https://en.wikipedia.org/wiki/Ari_Ne’eman
growing up forced to ride in a van for an hour and half in both directions every day to attend classes at a segregated school for special needs children rather than being able to walk to the school located five minutes from his family’s house in new jersey
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a story on tape that his father used to listen to while driving made a deep impression on ne’eman.. a young man who renounces his judaism is warned by his grandfather, ‘don’t wast time, don’t waste time’ in jewish day school, ne’eman learned the phrase tikkun olam, which means living in a way that helps heal the broken world
after his aspergers’ diagnosis at age 12, he had to leave that school , which he loved. he hadn’t changed, but the attitudes of everyone around him seemed to be transformed overnight. ‘suddenly i went from being someone that people believed had a slot of potential.. to someone who surprised people by any positive attribute that i might display, before everyone focused on things i was good at.. after.. everybody focused on things i struggled w .. the things that made me diff.. which were often same things that people had framed as positive before..’
he also began researching the history of the disability rights movement, because it struck him that many of his difficulties were not ‘symptoms’ of his autism, but problems built into the ways that society treats people who don’t meet the standard expectations of ‘normal’..t
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ari: ‘i always felt that these things were wrong – not just for me, but for a lot of people. an i didn’t just want to get out i wanted to end the fact that there is an ‘in’..t
getting in ness
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the diversity of the spectrum made organizing difficult – 2006 – found asan
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asan’s julia bascom publishes a groundbreaking anthology of essays by people on the spectrum called loud hands.. julia: ‘one of cruelest tricks our culture plays on autistic people is that it makes us strangers to ourselves‘..t
@juststimming
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for kids w limited expressive language like leo, shore has found that music can serve as a more natural medium of communication than speech..
musicophilia et al
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carol greenberg: ‘there was no one left out in the star trek universe, no one was ostracized, no one who was too weird. in fact, the weirder you were the cooler you were, because you had more to bring to the table.. that was a lifesaving message for a kid who go bullied for being diff.. ‘
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we need all hands on deck to right the ship of humanity – zosia zaks.. t
mufleh humanity law: we have seen advances in every aspect of our lives except our humanity – Luma Mufleh
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in recent years, researchers have determined that most cases of autism are not rooted in rare de novo mutations but in very old genes that are shared widely in the general population while being concentrated more in certain families than others.. whatever autism is, it is not a unique product of modern civilization..
it’s a cure to civilization.. ie: getting us back out of it.. if we listen deep enough.. no..? ie: higashida autism law: born out side civilization
neurodiversity advocates propose that instead of viewing this gift as an error of nature .. society should regard it as a valuable part of humanity’s genetic legacy while ameliorating the aspects of autism that can be profoundly disabling w/o adequate forms of support. the suggest that, instead of investing millions of dollars a year to uncover the causes of autism in the future, we should be helping autistic people and their families live happier, healthier, more productive, and more secure lives in the present..t
don’t know about productive and secure.. but.. we should all try an experiment in ie: cure ios city..
for all of us
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we have to learn to think more intelligently about people who think differently
the main reason the internet was able to transform the world in a single generation is that it was specifically built to be ‘platform agnostic’.. doesn’t care if your device is running windows,linux or latest version of apples’ ios.. its protocols were designed to work w them all.. to max innovation at the edges
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epilogue
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one of the most important things.. work on strengths rather than trying to correct his deficits.. if only he could talk… read… but once he figured out that he loves art, everything else came along w it,.. because it feels good to do something you’re good at doing..
shortly before rimland died in 2006, he told a reporter.. that his fondest wish was to make his son ‘normal’.. but he and gloria had already given him something better than normal: a community that celebrates him for being exactly who he is.. t.. mark has most precious and elusive thing anyone can hope for.. he is completely at home on earth..
imagine the energy of 7bn alive people.. ie: meadows undisturbed ecosystem..
ie: hlb via 2 convers that io dance.. as the day..[aka: not part\ial.. for (blank)’s sake…].. a nother way
in the city.. as the day.. via gershenfeld something else law
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autism et al
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be you. 