“Neurotribes” by Steve Silberman (Part 1 of 2)

“Autistic children have the ability to see things and events around them from a new point of view, which often shows inspiring maturity. This ability, which remains throughout life, can in favorable cases lead to exceptional achievements which others may never attain. Abstraction ability, for instance, is a prerequisite for scientific endeavor. Indeed, we find numerous Autistic individuals among distinguished scientists.”

Hans Asperger

One thing comes to my mind when I read the above quote. I sure wish I heard that when I was in high school. I have greatly appreciated the insight from Autism memoirists like John Elder Robison and Dr. Temple Grandin. The most important critics of our world perceptions about Autism are those who actually live with it.  Many people in the tech world know San Francisco resident Steve Silberman for his contributions to “Wired” magazine and his recent Ted talk. Aside from those worthy accomplishments, his recent book “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity” continues to become his most recognizable.

Silberman’s inspiration behind writing this book was a technology conference that he attended back in 2000. However, this was not the typical corporate technology conference that you would find in a venue like Pittsburgh’s David L. Lawrence convention center. It took place on a cruise ship through Alaska’s beautiful Inside passage.

“In the past forty years, some members of this tribe have migrated from the margins of society to the mainstream and currently work for companies like Facebook, Apple, and Google. Along the way, they have refashioned pop culture in their own image; now it’s cool to be obsessed with Doctor Who – at any age. The kids formerly ridiculed as nerds and braniacs have grown up to become the architects of our future.”

Among the attendees of this cruise was Larry Wall, the creator of an open source programming language called Perl. Steve walked over to Larry and asked if they could meet at his home located in the heart of Silicon Valley. He accepted the invitation, only after warning Steve that he and his wife happen to have an Autistic daughter. Steve’s only introduction to Autism was from the award winning film “Rain Man.” He indicated that Raymond was “a memorable character, but the chances of meeting such a person in real life seemed slim.” That is still true in the 21st century. I certainly cannot count toothpicks at a glance or memorize a phone book because such impractical activities are uninteresting to me. Regardless, Steve soon discovered that Larry also exhibited several characteristics that would classify as “high functioning Autism” or Asperger’s Syndrome.

“As I chatted with Larry about his illustrious invention, a blub lit up on the wall behind us. He had replaced the chime on his clothes dryer with an unobtrusive bulb because the little ding! at the end of each cycle disconcerted him. Such tinkering seemed par for the course for a man whose code made it possible for a Perl hacker named Bruce Winter to automate all the devices in his house and have his email read to him over the phone – in 1998. It didn’t occur to me until much later that Larry’s keen sensitivity to sounds might provide a link between his daughter’s condition and the tribe of industrious hermits who invented the modern digital world.”

I look at figures like Mark Zuckerberg, Bill Gates and Larry Wall. I realize they are more than just important figures in the development of computing and technology. They are important reminders of how far we have come with regards to recognizing Autism and Asperger’s. They are important reminders of how far the world has come with regards to encouraging these “brainiacs” and “nerds” to embrace their uniqueness by turning their skills into something marketable and rewarding. It certainly is true that we still have a long way to go with regards to challenging our society’s ignorant and negative mindset about being Autistic or “on the spectrum.” Before reading NeuroTribes, I never wondered what it took for our world to evolve into the belief that being different is cool. I must admit, this was an emotional journey for me to read about.

Adolf Hitler perceived the disabled as living “life unworthy of life.” The infamous dictator’s hatred towards the weak and feeble minded compelled him to enact Action T4 (German: Aktion T4.) This permitted involuntary euthanasia of the elderly, mentally or physically disabled, mentally distraught and the incurably ill. These “weak” and “feeble minded” children were tortured to death through starvation and forced overdose of medications. A nurse named Anny Wöbt testified against German psychiatrist Erwin Jekulius for the murder of her six year old son at the Am Spielgrund clinic.

“It was unambiguously clear from his remarks that he endorsed the entire operation against ‘life unworthy of life’ and that he was prepared to do whatever the Nazis demanded.” She begged Jekelius to at least grant her son a quick and painless death, and he promised to do that. On February 22, 1941, Alfred, six years old, perished of “pneumonia” at Am Spigelgrund. When Wödl viewed her son’s corpse, it was obvious that he had died in agony.”

This certainly is heavy material. The worst part of reading about these brutal “euthanasia crimes” was knowing that these children (most likely) could not have managed to escape the systematic abuse if an Autism diagnosis had actually existed. The general public did not even begin to recognize the term “Autism” until (approximately) the 1960s. Bruno Bettelheim sparked a lot of controversy in 1967 when he compelled the public and medical professionals to accept Leo Kanner’s “refrigerator mother” theory. He claimed that the child’s diagnosis was a result of the mother being “distant, cold and rejecting.” Parents commonly reacted to the revelation of their child’s diagnosis by institutionalizing them. However, there were many parents who refused to accept that as the “one and only” path for their future. They were willing to go the extra mile and provide for the child. Dr. Temple Grandin’s mother did that by introducing her to people who were willing to mentor and guide them along the way. This can be hard to do in our modern world. The main reason is because it continues to punish those who think differently. Nonetheless, it reminds us that there are people who genuinely care and they are the only ones who will truly matter!


Temple Grandin (2009 HBO Biopic)

Most of us on the Autistic Spectrum know who Temple Grandin is. She was the very first person to change the face of Autism and the livestock industry. Actress Claire Danes portrayed Ms. Grandin in a film about her life, simply titled “Temple Grandin”. I wanted to write about this movie because it is very important to me. I say that because she was raised in the 1960s, and very little was known about Autism. I am not going into great detail about it, but I want to tell you about a few of the characters and some scenes I liked in the film. The film portrays what life was like for people on the spectrum during that time period. When it comes to helping other kids with my diagnosis, I must say we have come a very long way. However, we still have a very long way to go. I want to emphasize that I do not believe in a “cure”, but I do believe that we still need to do a lot more in the way of researching and finding ways to help kids on the spectrum. (Especially those who have experienced similar struggles to the ones I have been through).

One thing I really enjoyed about this film was the opening scene. She stood in the Ames room, introduced herself and explain that you need to think differently when watching this film. I thought that was a perfect way to open the movie, because it helps the viewer realize you need to try to see the world as Temple sees it. She “thinks in pictures”, which means she is a very visual thinker. When she was younger, she didn’t understand that her style of thinking was quite different from everybody else. She worked in the cattle processing industry, and she would often ask very complex questions about the systems they used. People would often become frustrated because they couldn’t answer those questions. They were very detailed questions, and a neurotypical person often doesn’t think about the detail. When she designed systems for the cattle industry, she noticed many things that can cause the cattle to balk or become frightened. People would leave articles of clothing and equipment hanging on the equipment and on the floor. In her TED.com speech, she talked about how she noticed how the waving of a flag would cause the cattle to become frightened or stubborn.

There were also people who didn’t embrace her mind and they didn’t believe her systems would work. She also had to learn how to put up with harassment from some of the more ignorant people in the industry. When she was researching how cattle acted, she would often go into the chutes to see the things cattle were seeing. People obviously didn’t think that was “normal”. It was frustrating for her because many of the people in the slaughter-house were very uneducated and hostile. In one scene, they dumped bull testicles on the windshield of Temple’s car. I also noticed how they workers would stare at her and laugh when she became angry. The film portrays some of the prejudices she had to endure not only because she was Autistic, but also due to the fact that she was a woman. After I had the opportunity to watch the entire film, I watched the movie again and listened to the audio commentary. The writer, executive producer and Temple herself discussed all the scenes throughout the movie. She mentioned that people eventually started to respect her when they actually realized her systems not only worked, but they were more humane and efficient.

During the 1960s and 1970s, people with Autism were usually institutionalized.  It was not an enjoyable experience to be put in an institution, Understanding of Autism took a turn for the worst in the 1960s, thanks to Bruno Bettelheim. His theory stated that lack of bonding between the mother and the child caused Autism.  Luckily, modern technology and research has shown that he was indeed a fraud. Autistic people were mainly thought of as infant schizophrenic until the late 1960s. Temple’s was very fortunate to have such a dedicated and loving mother, Eustacia Cutler, because she obviously wouldn’t be the person she is today if it were not for her. She was one of those mothers that refused to institutionalize her. She knew she could become somebody in the future. I hope to buy the book “Thorn in My Pocket”, which was beautifully written by her Cutler. It explained her fight to make her the person she is today.

Aside from her mother, Temple was also fortunate to have her high school science teacher, Dr. Carlock as a mentor. I firmly believe that everybody (Autistic or not) deserves at least one person who will set a good example and will always respect you. I consider Aaron from Computing Workshop as a friend and a mentor. I started spending time with him three or four years ago, and he was still in high school at the time. It felt great to know that somebody was actually excited to see me, because nobody at Freeport really was. David Strathairn portrayed Dr. Carlock, and he was probably my favorite character in the movie. He used to work at NASA, and Temple got along with him really well because she was interested in science. I liked him because he was one of those dedicated science teachers who would always show their students interesting things. He was also one of the few teachers who actually recognized Temple’s visual skills and actually tried to understand her Autism. Dr. Carlock really convinced Temple that it is important to study and do well in school. He also encouraged Temple into going to college. In life after high school, Temple sought him for advice quite often, until his death.

As I said in the very beginning of this blog, understanding of Autism has really come a long way since the 1960s and 1970s. However, we still have a very long way to go. Public high schools are not set up right for kids on the spectrum, you know that from the experiences I have written about in the past. Public schools are not doing enough to educate faculty, staff and students about this disorder. I am trying the best I can to help people become aware about Asperger’s and Autism by writing my blogs. I am proud to say that 5,537 people have clicked on and read my writing so far. Every time people read my blogs, they become more aware of this disorder. Even thought we will not fully understand Autism, we most certainly can raise awareness and research ways to help kids on the spectrum. I do see this happening in the near future!

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