NeuroTribes

 So I finally finished the behemoth that is NeuroTribes by Steve Silberman. Truly a bible on the subject. Sublime end to almost a month's worth of reading. 

Cried through a few pages, genuinely broke out laughing through a few others... the book really paints a compelling picture, taking you through an almost audio-visual journey across the autism continuum. 

So many people - parents, children, allies, activists, advocates, psychiatrists, psychologists, teachers - have sacrificed so much in terms of time, money, and their entire lives to dedicate themselves to the cause of truly understanding what goes on in the autistic brain. 

So much research has been done, so many theories put forth, so many essays written, case studies observed, and 80 years into it, we're still not sure about the exact cause. The good news is that the world is no longer in a place where it needs to determine the exact cause. 

For about 40 years experts from all around the world tried as best they could to get to the root of the problem. Then some time around the 90s, slowly the world seemed to be shifting in a good direction. From needing to find out why, we progressed to accepting the existence of the spectrum and figuring out how to accommodate. 

With the work that people like Bernard, Jim Sinclair, Judy Singer and others have done, we've really come a long, long way in understanding autism and autistics. I mean, from diagnoses of infantile schizophrenia and childhood psychosis to accepting a spectrum-based approach and totally eliminating even comparatively less controversial terminology like high- and low-functioning, the progress has been massive. 

We're now at a point in time when we don't necessarily need to understand the reason for the occurrence of autism any longer. All we now need is to build a world that is accepting of disabilities and neurodiversity, and makes it so for these tribes that it seems like their unique needs are being taken into consideration at all levels of development and policy. 

The history

In Nazi Germany, wanderlust and melancholia were clubbed together with 'insanity', criminality, perversion, dementia, alcoholism, migraine, bedwetting and sleepwalking as a form of degeneracy. Surveys were conducted with parents who were asked whether they would be okay to have their infant children humanely executed if they were found to have a developmental disorder. These children were considered "empty husks" and the popular phrase used to refer to them was: 'Life unworthy of life.' 

Leo Kanner and Hans Asperger were the two scientists who spearheaded discoveries in this field. And Georg Frankl is the bridge between them. He worked with both. 

The two essential traits of autism in children, according to Kanner - 

1. Autistic aloneness 

2. Elaborate ritualistic behavior 

But then Kanner also went and explored the whole toxic parenting angle, which discredited a lot of his research. He also tried to establish something called early-onset psychosis, which is basically an overt display of autistic characteristics in children about 1 or 2 years of age. Which Despert and some other psychiatrists did as well. But Kanner just absolutely wanted to have something called Kanner's Syndrome, so he persisted. 

One of Kanner's most interesting and controversial theories was that of the schizophrenogenic mother. He basically postulated that mothers with ambition who had been forced to give up their careers to start a family created a pre-natal environment in their bodies that wired their foetuses differently at that stage of life itself. Personally, I don't understand how Kanner thought it prudent even to float such a theory considering most of his patients' parents were in the medical profession themselves. He also theorised a lot about overprotective parenting, parenting to prove a point to society and to appear modern in thought, and basically reward-based upbringing as opposed to appreciating the inherent value in life itself. Lots of major controversial stuff, which is perhaps why Kanner is lesser heard of than Asperger even though both were contemporaries. 

Then of course we have Asperger and his more popular Heilpadagogik outlook, which takes away focus from parenting and treats autistic abnormalities as gifts. Which I think is a great overall outlook to have in life. Don't want to make it an America vs Europe debate, but Kanner really did go the weird way even though his other discoveries on autism are pretty on point. Not to discount the big role he's had to play in bringing over Frankl and wife from war-torn Germany and finding them work in America post WWII. 

Another important thing to remember is Kanner based his theories on his observations of only about 11 or 13 children. Which means it doesn't require 100-150 children in order to reach a deduction, but don't have a very small number either. Better yet, don't focus on the exact number at all.  Although most of Kanner's parents were upper middle class, autism and mental "retardation" overall was historically (erroneously, of course) ascribed to the lower classes/ minority races. So much to figure out over there. 

And the most startling discoveries of them all - all these studies are post 1938, which is the official year in which autism research actually began in full swing as more and more cases started coming up. Which means it's less than 100 years old. And Caesar who had frequent epileptic attacks - which is a common symptom of autism - happened before 45 BC. We've started studying this condition only very, very recently. 

The mainstream puts us in a state of cognitive estrangement. Such a beautiful term. Explains so clearly what the autistic's issue with mainstream entertainment seems to be - can't relate to some of that bullshit. And that brings on the subversive impulse, which makes us create what we like to see and become part of groups that we associate with. Not too heavily into sci-fi fandom, nor have I ever been apart from Harry Potter maybe, but I've always been keen to explore a sci-fi universe in depth and associate with likeminded people who have similar passions. Thing is that there's a sense of competition and superior/ inferior dynamics even within these closed groups (ironic, because some of them are against this very social for hierarchy). And I'm just not very comfortable with any kind of competition. The concept of one being better than another at a particular thing is just inherently alien to me. Which is strange, considering sports and a bunch of other fields are heavily centered around this ideology, including of course survival of the fittest by Mr Darwin, which is not lost on me. After all, competition is supposed to be a reflection of your hard work, perseverance and skill. And just simply who's better will find himself surviving. Still, in a more philosophical sense, winning feels good only temporarily. Failure stays and teaches. Lol. 

Discovered Hugo Gernsback, a contemporary and good friend of Nikola Tesla. What a cool guy. Possibly on the spectrum himself, but not diagnosed. Invented the concept of sci-fi fandom through a bunch of pulp magazines and comics he produced. Built communities, brought people together, gave voice to the socially awkward. Not a prolific inventor himself, but teamed up with Tesla and did things such as predict way back in 1926 that electricity would be transmitted wirelessly, telephony and television would make communication easy and convenient, etc. 

One of Gernsback's most popular comics is called Amazing Stories. It churned out all these sci-fi stories that paved the way for future astronomy. Also had a letters section which became a hotbed for discussions on all kinds of science topics including Einstein's theories and stuff. One great way to mobilise a true community is to really figure out what they want to see and how they want to see it, and give it to them. 

Also printed out Jim Sinclair's Don't Mourn For Us, an anti-cure essay on autism. 

Two more geniuses - John McCarthy and Bernard Rimland. Some of the greats of the computer culture substituted computer language for real life languages. They found community in ham radio, a bunch of newsletters and magazines. There's a big section on the operations and history of the ham radio, which I pretty much riffled through. 

Then there's Lee Felsenstein, another spectrum scientist and researcher, who was effectively the inventor of personal computing as we know it today. Invented the Osborne-1, which preceded the first Mac by 3 years, and was an inspiration for Jobs himself. Felsenstein was also the inventor of the first online bulletin board, which would later go on to become online chat forums. Instead of thinking about his autism as a handicap, he looked at it as the "edge" he had over anyone else. He's pretty much the first of the lot to look at this condition this way, and that's a very cool thing for back in the day. 

What seems to be super clear is the autistic mind develops and catches up, but in due time. In a traveller's terms, It's quite literally a different route taken to get to the same destination. It could be a more long-winded, wavy, arduous, rugged, treacherous path, but one that yields result, even if delayed. Of course not every autistic child grows up to be high-functioning (a term that has become outdated since DSM-IV in 2012), but that doesn't mean they don't amount to anything. In the larger scheme of things, even if change brought about at the most miniscule level matters, then even one life looked at differently or one outlook changed for the better means the autistic person's life has been worthwhile. All this pre-historic, Nazi-era bullshit about them consuming more resources than contributing to society is antediluvian. Demonstrative of their narrow-minded outlook. 

One of the most important things is that in most cases Aspies have felt a lot more at ease with life in general post diagnosis. Second, no matter how prolific their invention or discovery or their general lifestyle/ social status, there's always this lingering sense of un-belongingness in the world. Of a discomfort with the mainstream. But at the same time there's also a compulsive gravitation towards community-fostering, towards people who think alike. And there's a constant stream of internal chatter (much much), which needs to be shared or expunged. The children apparently are almost always aloof, fascinated by the oddest things, and their minds have a tendency to latch onto objects and the peculiar ways in which they behave. 

Also, there's an anxiety. I could sense a continuum of mild to profound anxiety within almost all the Aspies covered in the book. There's a prevailing sense of urgency mixed with feelings of inadequacy, like there's a definite shortcoming but one they cannot put a finger on, and nor are they able to figure out why that shortcoming is so critical to have. 

In the West, populism largely isn't the status quo, individualism is respected across social classes (maybe in some cities only?). Out here, that's not the case. Most children are perceptive enough to start masking early on and realise that life won't be normal without it. In fact, a lot of Indian society's customs, ideas and traditions don't make any sense. But our young still do it, some even happily. Is this a form of masking, or what they also call camouflaging? Who's made these absurd rules by which society plays? And by who I mean what kind of brain is thinking this way and for what reason? There's also code-switching, which is a derivative of masking, and means being different to different people depending on your perception of what is expected of you in their company. 

Would be so cool to start looking at people as their brain types rather than anything else. Wonder what dogs smell each other's buttholes for. Hmmm, enough thinking for the day. 

A wise man once observed that if you study an object of nature intently enough, if you focus upon it long enough with all your powers of concentration and attention, there comes a point at which the macrocosm behind the object is suddenly revealed. 

'inborn perceptual disability'

Rimland: ...lost in thought - reliving an experience in minute detail, hearing music long since forgotten or perhaps never heard by others, or playing games with numbers or objects manipulatable only in the recesses of his brain.

A gift is a vulnerability. Autism represented a potential for genius that had been derailed somewhere along the line - brightness gone awry. The higher the potential intelligence, the steeper and more precarious the slope.

A recurring trope through the book is passionate scientists working hard to come up with hypotheses about autism that are eventually overridden (and the scientists sometimes brought to disrepute, like Kanner and Bettelheim) just years later by other scientists. As more and more discovery happens in the ND field, older theories keep getting debunked. For the longest time, while Kanner and Eisenberg were still around, the refrigerator-mother theory was linked with kids with autism. Rimland and Asperger overrode that, but not together. No one in America even had a clue about Asperger's work until the mid 1900s. 

General intelligence is notoriously difficult to measure in autistic people. Why? 

Rimland the genius decided to make his book interactive by way of adding a questionnaire to the end, which physicians had to get parents to answer. Definitely incorporate this in a show. 

Phenylalanine is a compound found in cow milk and human breast milk that autism kids cannot synthesize. It gives urine a rank musty odour. 

Ole Ivar Lovaas was another psychologist who was doubtful of psychoanalysis. When his patients asked him if they would feel better talking to him, he said yes but knew that wouldn't always be the case. Some apparently even admitted to feeling worse. Personally, while therapy did help me to a certain extent, what I feel about autism spectrum people (especially Aspies) getting therapy is that the current format works with a broad, generalised idea of human behaviours, tendencies and capabilities. It tends to assume that everyone is able to do everything if only they put their mind to it. But the book tells us that's not the case. And so before therapy, a proper diagnosis of the mind will help the psychotherapist figure out how the brain is wired and help the person work through their issues accordingly. 

Ivar Lovaas is the inventor of ABA, which is giving prompts to a child to elicit certain behaviours. He called it behavioural engineering. Bernard Rimland was a proponent of this method. Perhaps the only strange thing he did in all his illustrious career. 

George Rekers solicited grants to "treat" gender dysphoria. One of his first patients was Kirk, who Rekers said demonstrated "sissy-boy" behaviour. Kirk's diagnosis was preceded by such "abnormal" body expressions as the limp hand, the "girly" walking gait, and verbal expressions such as "Oh my gosh," etc. Rekers thought it necessary to eliminate these behaviours and employed a bunch of questionable tactics to rid Kirk of them. At first there was definite resistance, then slowly Kirk began to show "improvement". Rekers and team took this as a positive sign and continued on with their methods. Eventually Kirk was able to let go of his "girlish" tendencies and the treatment method garnered a lot of praise. Then suddenly at 38, Kirk killed himself and it was later revealed he battled years of depression prior to his death. Incidentally, just months later Rekers was ambushed by two reporters at the airport returning from a vacation with a male partner. While he strongly denied it was his sexual partner, the link was pretty obvious to everyone. Kirk's case was called the Feminine Boy Project. 

The big question remained - whether to destigmatize a behaviour in society or change the child's behaviour through aversion. 

Oliver Sacks is another person instrumental in understanding autism. He wrote a book called Ward 23, and in a moment of self-doubt threw the only manuscript in the bin. Downloaded a book by Sacks called An Anthropologist On Mars. Rimland was a staunch supporter of Lovaas. He started to propagate the ABA method where the behaviours were corrected through questionable methods. ABA is not even talked about in woke circles. It's not a positive recourse, as behaviour change is not even considered an option, and rightly so. 

It's not unusual for humanity to treat its pioneers with hostility.

Linus Pauling started advocating the use of orthomolecular medicine (meganutrients) and desirable compounds such as Vitamins B (and its various other derivatives) & C in order to regulate children's moods. Rimland was a big advocate of this, and encouraged parents in his circles to give them to their children regularly. What the effective nutrients were came secondary to the fact that they helped their children anyway. 

Phenylpyruvic acid found in a child's urine was a key indicator of autism aka PKU (phenylketonuria). 

Oliver Sacks has written a beautiful foreword to Temple Grandin's Thinking In Pictures. In it, he says one of the biggest problems with the autistic brain is the absence of something called theory of mind. Unlike neurotypicals, autistics are unable to understand the states of mind of other people and behave accordingly with them. 

John and Lorna Wing founded the National Autism Center in London in the 1950s and worked alongside the NSAC in the USA. The group saw media outreach as essential to its goal in order to build membership and exert pressure on local authorities to achieve its goals (policy making to make the world a more inclusive place for the disabled). 

Lorna Wing was another pioneer in this field, coining the term "autism spectrum" because she wasn't too happy about the word continuum used to describe the condition until then. She was also the first person to use the term Asperger's Syndrome to label the high-functioning type of autism. Through her experiments and studies she found that a lot of the characteristics of Asperger's were found in "garden-variety" eccentrics as well. She and her husband John had an autistic child named Susie. 

Autistics are like extraordinary protagonists in search of a plot. 

Up until 1974, homosexuality was perceived as a mental illness, which Spitzer worked to change. 

Schopler and the CARS model for infantile autism screening, published in the DSM-III-R, came to be regarded as the gold standard for autism testing among young children by the 1990s. Be interesting to see if any Indian psychiatrist practices this method? Then something even better called the ADOS came about after the release of Rain Man, which became the new gold standard for autism testing. It took into account notes made about their children's behaviour by parents, and deemed the process of diagnoses and care as collaborative. This is also potentially where content could play a big part in spreading awareness about the ASD spectrum. 

Jim Sinclair was one of the pioneers of the adults with autism movement. Susan Moreno, the mother of an autistic child, started a newsletter called Residual Autism Newsletter for adults with autism. Sinclair submitted his poems, essays to the editor in the hopes that someone would contact him. NTs view the autistic condition through the prism of pathology, much like looking at animals in a zoo, which is disconcerting for the autistic. 

"If normal is being selfish, being dishonest, killing, having guns and waging war, I do not want any of it." - Kathy Lissner

Donna Williams, Kathy Lissner and Jim Sinclair founded the Autism Network International. Together, the trio did lots of good work in sharing their experiences living with ASD and gathering people, particularly adults, together to create safe spaces. They were also instrumental in the setting up and running of the ASAN, which is a progressive-thinking autism support network for children and adults. The ASAN has done some pathbreaking work in pioneering autism research ever since the decade of the Autism Wars, when a large section of society felt that autism had causation with vaccines. 

Functioning levels among autistics change not only in the course of the life span but also day to day. 

PDDNOS - atypical autism 

Judy Singer is credited with coining the term 'neurodiversity'. She was among the first people to liken the sexuality and gender spectrum to the neurological spectrum and was interested in the 'liberatory, activist aspects' of the movement. 

Tikkun olam - living in a way that heals a broken world.