Neurotribes

  In this final chapter (the shortest in the book) we discuss a little bit about the future of autism, and how things from the previous chapters can be applied. We look back to other chapters about how society and environments can shift to be more inclusive spaces. We also look at the label discussion of people with autism vs. autistics.       Perhaps the most emotional part for me was revisiting Mark Rimland, the son of Bernie Rimland who was one of the founders of Defeat Autism Now! While the elder Rimland did much to remove the guilt and shame of parents with autism, he died hoping that one day his son would recover from it. In the closing pages of the book, Mark Rimland’s mom is asked what she’s most proud of, and she replies that she is so happy how he’s turned out, and how she wishes she hadn’t stressed out so much about some of the details, but how so much was built off of his successes.

       In this chapter, we get caught up close to contemporary times where we culminate with some of the main themes of this book. Essentially, part of the culture in the autistic community is hope to cure their children or save their children from autism. We see this in fear-mongering campaigns stating that autism has kidnapped your child and the anti-vaccine movement. On the other side, we see parents empowered and pushing back against some of these movements, stating that they’d prefer to see society shifting to be more accepting of their children (this was particularly moving when pushing back against some of the fear-mongering).      We also see conventions about autism shifting some. While Temple Grandin was a featured speaker in some of these early conventions and answering questions parents might have had about their children. These conventions were often run by people who didn’t have autism. Now, they are being run by autistics and conventio...

       I discussed previously how autism went from being a very narrow diagnosis only found in children to a larger spectrum. In this chapter, we expand on that as we witness the Diagnosis and Statistical Manual of Mental Disorders (or DSM) go from selling a few thousand copies a year to becoming a bestseller.       When the DSM was being revised and prepped for its third edition, editor Robert Spritzer brought in researchers (including Lorna Wing) who would help expand the definition of autism beyond schizophrenia and being limited to only children. Kanner’s original checklist was questioned and expanded upon and the diagnosis was expanded beyond what Kanner had ever foreseen. This eventually led to the problem we saw at the turn of the century when people began to suggest that autism was epidemic that was exploding in our population. The truth of the matter was that it had been here for some time, we were just more aware of how to diagnose it....

  Rain Man was a beloved movie starring Dustin Hoffman and Tom Cruise, in which Hoffman played a man with autism and who was introduced to his brother, who had previously not been aware of his existence. This was the first movie that had a huge impact on the world’s perception and awareness of autism, and it changed the world for the better.       Barry Morrow, who was one of the screenwriters of the film and conceived of the story, had an experience as an adult befriending a man named Bill, who eventually came to play harmonica in Morrow’s band and be his child’s unofficial grandpa.      Once the movie was released, it became clear that it had huge effects on society. Some mothers with autistic children discussed about how prior to the movie coming out, they would be scolded if their child misbehaved or had a temper tantrum in a store by others. After the movie came out, it provided an opportunity for parents to have dialogues with the other ad...

       How did autism go from being tied to something like schizophrenia and very severe characteristics to a larger spectrum? In England, Lorna Wing, a British psychiatrist, and her husband John, a schizophrenia researcher had a daughter who immediately had problems. Later, they were able to send her to school Sybil Elgar, a Montessori trained teacher, for autistic students. Because of Elgar’s success, the group that eventually became the National Autistic Society was formed of parents (similar to the NASC) and the iconic puzzle-piece logo was developed as a symbol for autism .       As King and colleague Judith Gould continued to research and survey, they found that more children than initially identified qualified for autism. Asperger’s Syndrome, a new diagnostic label was created to help identify students who shared some of the characteristics of autism, but did not qualify because they were verbal. Eventually, King would coin the term “Autism...

  After years of parents being brutally blamed for causing their children’s autism by Kanner and Bettelheim, a movement eventually took place that would lift the burder of shame, guilt, and blame from these parents and restore them with a new sense of purpose and creativity so they could better advocate for their children.       Bernard Rimland, a Naval Psychologist, was a self-taught outsider in the field of autism trying to find out all he could about his son’s condition from the limited resources at hand. He eventually went on to write a book called Infantile Autism which rejected the suggestion that parents were to blame for their children’s autism. He also helped found the network that eventually became the Autism Society of America.      While this network of parents was initially united, it would eventually split off into two factions–one that wanted to change their children so they could be accepted in society, and one that wanted to so...

  As someone who grew up on a steady diet of science fiction and fantasy, I was fascinated to read about Hugo Gernsback and his role in creating and selling wireless radios, creating a pulp publishing powerhouse, fandom as we know it, and essentially helping pave the way for people with autism to augment their communication. Gernsback was friends with Nikolai Tesla and while neither could’ve been diagnosed with autism, they both possessed characteristics of being on the spectrum.       Gernsback founded the magazine Modern Electrics for radio ham operators, attempted to coin the genre of scientifiction with his novel, and founded the science fiction magazine Amazing Stories . He was obsessed with cool gadgets and all the possibilities and promise of science.      What’s particularly interesting is the mark he left on modern fandom. If you’ve ever read any of those old pulp stories about a single, stoic man exploring unknown planets and aliens an...

       While Kanner was able to to continue his studies and writings, he made one of the most difficult and brutal accusations imaginable: that the parents of children with autism were to blame for their children’s condition. Kanner observed some of the parents being cold with their children and particularly some of the mothers spending time as professionals in the workforce. Some of the relationships seemed almost mechanical to him. He attributed this to refrigerator parenting, and while he attempted to suggest that this didn’t mean that the parents were directly at fault, it was a huge implication.       Kanner wasn’t alone in this. Bruno Bettelheim, a survivor of the Dachau concentration camp, came to New York City. In the 1960s, Bettelheim wrote books such as the Empty Fortress, in which he suggested that parents wished that their autistic children did not exist. The book was widely read and reviewed, and became an introduction to many on the ...

       It is interesting that while Asperger was in Vienna studying children, a young American psychologist named Leo Kanner was doing similar studies in the United States. As far as we can tell, Kanner had no knowledge of Asperger or his studies until much later, and after he himself had made similar discoveries on autism. Kanner had a unique ability of being able to get his subjects’ parents to open up and discuss all kinds of different aspects of their children’s life, but connected the disorder to schizophrenia. Kanner had impostor syndrome for some time because he didn’t receive his degree in psychology from a traditional method.       While Kanner continued to study these children with unique and under-reported condition, the rise of the Nazi party and the beginning of World War II was happening in Europe. Instead of being corralled into gas chambers, children were being institutionalized in the U.S. Eventually, Kanner published his “Autisti...

       In this chapter, we meet one of the founders of autism: Dr. Asperger, whom Asperger’s syndrome was named after many years down the road. Here, we get a close up view of Asperger’s studies working with children in Vienna during the 1930s. Asperger understood it wasn’t about how well or how poorly the child learned, but what’s the most effective way to teach him. Asperger saw his patients as allies and thought of them as absent-minded professors who were able to teach him about how to appropriately and effectively teach them.       Unfortunately, there was a storm on the horizon. Eugenics was making a grand push at this time, and people with disabilities were thought of as being less than human. During this time, one institution caretaker sent out a letter to parents of institutionalized children asking if they would consent to being put to death painlessly. The majority of responses from parents were horrifyingly in the affirmative.  ...

  If the first chapter represents snapshots of the hidden history of people with autism before the term or disability was identified, the second chapter is a breakneck flash forward into the life of the Rosas family as they went through all the different paths hoping to help their autistic son. Some of the treatments recommended to parents Craig and Shannon seemed  reminiscent of the snake oil salesmen in the wild west, but the pressure to find a cure for their son Leo was intense. This wasn’t helped much by some books proclaiming cures for autism, based on Adaptive Behavior Analysis (ABA) and certain diets. The Rosas tried a little bit of everything – participating many of these treatments, shifting Leo’s diet, and even created an online blog about their soon-to-be nonautistic son.  At one point, one of the specialists they were seeing continued to recommend chelation to combat levels of Mercury found in Leo. But when Leo’s levels came back at low and the recommendat...