The History of Autism Part I – Origins of Autism

In 1911 a Swiss psychiatrist known as Dr. Eugene Bleuler made a startling discovery. While studying individuals with schizophrenia, a term he coined, he noticed that many of those same patients had related symptoms that he hadn’t diagnosed before. These patients seemed entirely withdrawn, oblivious to the people around them, and completely self-absorbed. Finding a way to describe them, he stumbled upon the term “autism” derived from the Greek word “autos” meaning self, in this case wholly self-absorbed. This is my two part blog that focuses on this journey of autism from a symptom of schizophrenia to a federally recognized  disorderin 1991. In order to be aware of the present, we should also be aware of the past.

In the many years that followed Dr. Eugene Bleuler’s discovery, autism remained categorized as a version of schizophrenia for a sub-group of patients. In 1926 it was claimed that Soviet neurologist, Grunya Sukhareva, was the first to extract autism from schizophrenia. Dr. Sukhareva even used the term “autistic psychopathy” years before Dr. Hans Asperger (whom I’ll get to later) did to describe his patients. But the man who made the theory popular was Dr. Leo Kanner, an Austrian psychiatrist who ended up in the United States, due to poor conditions in his adopted homeland of Germany. Shortly after his arrival in 1935, Dr. Kanner wrote the pioneering book “Child Psychiatry”.  It was this book that stoked the curiosity of a family from Forest, Mississippi, the Tripletts. The Triplett’s oldest son, Donald, had gone through many unusual symptoms that the family couldn’t figure out.  The father wrote a very long essay to Dr. Kanner and he agreed to meet with Donald, who became known as autism’s Case #1.

What Dr. Kanner found out from Donald was groundbreaking in the world of psychology. Up till that point he thought that autism was a part of schizophrenia but now he wasn’t sure. Donald didn’t have delusions, nor did he experience “voices” or other hallucinations that were typical symptoms of people with schizophrenia. Donald was living in his own world, but it wasn’t separate from the reality he really lived in. In fact Donald, now in his 80s, has acknowledged that he didn’t cry when his mother died in 1985, because he “just didn’t react” not because he was oblivious to her death. These new findings, along with observation of several other patients similar to Donald, had Dr. Kanner propose a new theory that autism, instead of being a relative of schizophrenia, it was of its own being.  He ended up calling it “infantile autism”, since his preoccupation was with children who shared those traits, and he published an article on his new theory called “Autistic Disturbances of Affective Contact”.

Around the same time, in the mid to late 1930’s, another Austrian psychiatrist laid the groundwork for deeper insight into the world of autism. Dr. Hans Asperger, whom Asperger’s Syndrome is named after, had met with patients diagnosed with “autistic behaviors” but were of a wider group and variety from the ones Dr. Kanner had seen, and had expressed greater interest in the most high functioning patients. While these patients exhibited many symptoms of autism, their symptoms were seen as benefiting them, not disabling them. Since he was not a child psychiatrist, he followed many of these patients through their successful careers, including the Nobel Prize in Literature winner, Elfriede Jelinek.  Of these patients, he was convinced that “autism psychopathy” played a part in their successes. In fact, he even started a school for those with “autism psychopathy” but the school was destroyed and the co-founder killed during World War II bombings.

While one would expect such research to be crucial to the total understanding of autism, none of his work was translated into English and it took a year after Asperger’s death when the English speaking world learned about his research through British psychiatrist Lorna Wing, who published an article about him in 1981, calling his more specialized diagnosis as “Asperger’s Syndrome”, and coining the term “the Autism Spectrum”.  But it took a decade later, for German developmental psychologist Uta Frith to put out the first translated works of Dr. Asperger, which ended up making Asperger’s Syndrome official as a universal disorder.

In the second half of this blog, I will convey the impact of the new diagnosis of a neurological disorder during a moment in time when the practice of eugenics, a political ethos built around genetic purity and the warehousing of the disabled, was popular.  This became the governing ethos of a vile nation state during the 30s and 40s. I’ll also discuss whether or not a counter-intuitive disorder like Asperger’s Syndrome was turned into a political gambit by its very own namesake. And lastly, I’ll share information on the first popular “root cause” of autism, the Refrigerator Mother Theory, which has been discredited. Hope you had a lovely Autism Awareness Month in April, and stay tuned for more history!

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Double the Insight: An Interview with Alex Plank of Wrong Planet

On April 28th of this year, Els for Autism is going to help celebrate the end of Autism Awareness Month by hosting the inaugural Autism Innovations & Global Impact Conference: The State of the Science which will see a team of leaders all devoted to explaining the current state of the union on autism. One of our presenters, who is hosting the VIP dinner, is a shining star of sorts, not just with what he can talk about regarding autism but also how he utilized his condition as a springboard for opportunities for everyone, including himself, who seeks to be heard, or understood, when it comes to Autism Spectrum Disorder (ASD).

His name is Alex Plank, founder and owner of Wrong Planet.net, a forum for those with Asperger’s Syndrome, a variant of autism, which has become the largest web forum for autism. This past Wednesday I was given the opportunity to have a 30 minute interview with him when he toured the Els campus.

Now, typically, when doing an interview I just keep to the script, even if it hurts, with very little room to improvise or to concentrate on the answers of the person being interviewed, almost like a robot. With Alex, for the very first time in my short interviewing “career”, I felt like I could finally be myself. What went from an interview turned into a conversation, as I could relate so much to a person who I could’ve been friends with years ago as we have the same condition, Asperger’s, the same birth year, 1986, and were born very close to each other – he in Charlottesville, Virginia and me in Columbia, Maryland – but we finally got to talk to each other now. While it is usually inappropriate to talk about the growth of a simple interview, for me it was a big deal as it allowed us a greater connection than if it was just some random neurotypical.

Alex Plank was first diagnosed with Asperger’s at the age of 9, a year after the U.S. government officially recognized the variant of the disorder, around that time young Alex was being bullied a lot and had a hard time reading social cues and making friends, since his direct approach of asking people to be his friend led him to rejection after rejection. Like Alex, I didn’t have a large group of friends, and as I grew, instead of eating lunch in the cafeteria I would eat it in my next classroom, or I would spend time in a small classroom for autistic kids, “Hannah Moore School”, studying and maybe having lunch afterschool, while Alex would be beating his guidance counselor at chess, “He wasn’t just doing it to make me feel better” adds Alex, though he also added, “I hope”. We also found it easier to bond with the teachers, and the adults, on a school’s campus than the students themselves because of our interest in things that the adults could relate to more than the kids.

When he found out about his diagnosis while going through his parent’s documents, he felt ashamed, like he was somehow defective. As the years have gone on, he has come to understand his strengths and weaknesses. While he had to self-teach himself all kinds of social cues by studying others at his alma mater, George Mason University, the innate “obsession” or hyper-focus abilities that autism gives a person facilitated his starting Wrong Planet at the age of 17. He does believe that while focusing on academics is a laudable life skill what will shape your world will be something that relates to those inner “obsessions”, in his case computer science and movies which have helped him succeed in jobs.

So, the big question you may have is: How did Alex start Wrong Planet? Throughout much of his life, Alex Plank didn’t know anyone like him, and it was especially almost impossible to connect through the magic of the internet, it was long ago enough that Wikipedia had only one server, so he and a forum mate, Dan Grover, talked about how they should create a web site meant for people with Asperger’s Syndrome to find each other, with the name coming from the both of them feeling like they are “aliens from some foreign planet”, living on the wrong planet.

What does he want to do for the future? While he wants to create better quality resources for people to use from his web site, he is especially interested in maximizing the social climate for Aspies by facilitating offline social events, and conferencing so that social functions like dating, and just hanging out, could have a purpose besides an online forum.

Besides Wrong Planet, Alex has worked with the visual medium and has used his reputation as a way to speak at different public events. In 2010, as a side-project for Wrong Planet, Alex started a web series called Autism Talk TV. The 26 episodes typically deal with educational topics for those with autism, expert and authoritative interviews, and even a few appearances by native co-hosts, Kristen Lindsmith and Jack Robison (son of John Elder Robison who wrote, “Look Me In The Eye”), who both have autism themselves. From 2013-2014, he had worked as a consultant, and briefly acted, on FX’s “The Bridge”, a TV series about a detective with undiagnosed Asperger’s Syndrome who has to solve crimes. He has also appeared in multiple documentaries including “Shameless”, a French documentary about the misunderstanding of autism in that country, but what I really wanted to know was his perspective on the big blockbuster movie, “The Accountant”, where Ben Affleck plays an Aspie anti-hero.

While he liked the “absurd, off-the-wall movie”, his biggest disappointment was that there was nobody with autism credited for the making of the movie, but rather a bunch of doctors, even the Aspies who Ben Affleck claimed helped the film for him, were uncredited. To Alex, (and to me), doctors and specialists will never work in the same way that people with actual autism, because while they may treat those with autism, they can never know what it is truly like “to be someone with autism”. He also responded to the portrayal of Affleck’s character by saying that it is a myth that people with Asperger’s are cold, and devoid of any interest in social interaction.

As far as public appearances, many of which can be seen in videos on the web, Alex has given many keynotes at conferences for ASCEND and the Autism Society of America, and even DJ’ed at an all-autism wedding. What can he give audiences that many conference speakers cannot?

“I’m very tired and fatigued from these autism conferences where it’s dry and you hear the same stories over and over again,” he commented. Alex wants to overcome the typical doldrums of the circuit by enlivening his speeches with humor and fun, “making light of really bad situations by making fun of them.” He will also use his expertise in Hollywood to go over how autism is treated in the media, and how important it is for people to understand it. In a past year with “The Accountant” and academy award nominee, “Life Animated”, I think that his message couldn’t be more relevant.

So that was my interview with Alex Plank, if you have any personal experiences with the man, leave a comment, or any stories about Wrong Planet, and if you just wanted to read my writing, again, make sure to follow the blog.

To register to attend the conference and/or to meet Alex Plank at the VIP Dinner on April 28th, go to: elsforautismglobalconf.org

You Don’t Need to Open Your Wallet to Give

Christmas and Hanukkah are around the corner. Two major religious holidays that celebrate miracles and the ideas of gift-giving and charity, besides having a religious identity. As an organization devoted to charity, we at the Els Foundation stress exactly the importance of material giving but, even more than a simple cash donation, improving the lives of those with autism, holding up pillars in our community, and listening to those with the condition are also very important to us.

The donations that we receive also allow the Foundation to employ someone like me, an actual ASD personality, to write these blog posts, edit various important company manuals, and to serve as a role model to the community-at-large. It’s not just advocating from abroad, but advocating from home. Plus, the donations go to a state-of-the-art professional school, the Center of Excellence, whose purpose is to give autistic kids a sensory-friendly environment in which to improve on their skills and to get an education.

As many readers would know, autism was officially diagnosed by the U.S. Government in 1990, and Asperger’s, my condition, in 1994. Thus, because of the relatively recent nature of the condition, our mission is more experimental and cutting-edge than many organizations devoted to pursuing answers to different disabilities. It is up to potential donors to go to the oasis brands in the desert, especially in a county as large as Palm Beach, and to make history!

But, beyond autism, part of our mission is to create a more inclusive environment through the game of golf with #GameON Autism™ Golf. Golf is a huge industry, with lucrative careers and a thriving culture on the greens. Beyond that, the Els’ mission is to also pinpoint the strengths of golf as a source to challenge, and improve on disability. You don’t need to be an atlas to succeed in golf, which requires patience, practice, determination, perseverance and a connection to the soul of the sport. It could introduce an autistic individual to a new favorite sport, and, perhaps, could also give that same person a great and highly fulfilling livelihood.

Nonetheless, cash donations are not the only way to celebrate the spirit of this Foundation.

There have been many stories this past year that illustrate my point.-  A football player sitting with an autistic kid at lunch and a cheerleader asking an autistic kid to prom are two that come to mind.- These are individuals that use their prominence and positions within the greater community to help out those who may feel lonely or set apart from their peers. In the spirit of the holiday, perhaps consider helping someone who may be quieter or feel isolation and reach out to them. Who is outside of your typical friendship unit? Do you know someone who needs help? Just because someone doesn’t say a word, doesn’t mean that they are always comfortable or satisfied with the way everything is around them. Everyone appreciates a little kindness so pass it on!

If you have a friend with autism, take them out to enjoy and share an experience with them. Or, if you know someone who has a crush, offer to take them both out to the movies or a holiday parade, or perhaps take them to a dance, if the crush is with you. Tell the person on the spectrum how much you appreciate them, and for those of us with autism, I recommend trying something new.

Do something new. Be something new. Whether on the spectrum or not, we all can benefit from extra compassion and opening our hearts to others who need it most. Happy holidays to all. Thank you for joining me on the journey through this blog.

 

Music in Motion

So, if you’ve read my previous blog post, you’ll know that I am eternally indebted to The Beatles, beyond any measure of feigned sincerity. They gave me a figurative roof over my head and room and board, beyond any artist, entertainer, or con-man out there. It was primarily The Beatles that led me to what I could do with my time, besides my original goal, designing video games

What The Beatles did for me was to imagine (no pun intended) what it would be like if I tried to form a band addressing the same principles that The Beatles had, or at least tried to uphold. It was then, in the 10th grade, when I started pursuing the idea of writing song lyrics for my presumed future band. It was a way out for me, a way to express my thoughts and feelings, when I would feel uncomfortable, or awkward, doing it any other way.

During that year, I had highly depressive behavior because of all kinds of circumstances, and I felt like everything, and I mean EVERYTHING, was betraying me bit by bit until I could find no sanctuary to hide from my loneliness and anger. Through music and my lyrical muse, I spent a good amount of time working on trying to pre-suppose a new identity for myself that would try to live through the pain.

This band, BTW, would never happen. I eventually learned that I had a very limited voice, even though it is low baritone, and I wasn’t able to retain any instrumentation lessons, nor could I be able to even play a guitar, but I still kept on writing throughout. I would write about loneliness, about conflicts in my life, sometimes politics, commercial relationship kind of numbers, holiday-based ones too. While I really felt like I was going nowhere, what I was writing made me think that I could be going somewhere.

But I never wrote about my impressions of having Asperger’s.

In 2007, my father started singing with a cover band, and by the turn of the decade, they actually had a regular gig. When the owner of an Italian restaurant invited the band to play at a benefit for Autism Speaks. The hostess of the event, a news reporter, learned that I was diagnosed with Asperger’s Syndrome and I was invited to write and possibly recite a poem about my impressions of Asperger’s at the event. So, I wrote what would become “Misunderstood”. Unfortunately, I didn’t recite it at the event, but it became the first poem on the website of Tony Attwood, a famous Asperger’s expert, which I will always treasure. I’ve gotten a good amount of positive feedback on that poem. It is always good to have a well-liked debut, especially since I’ve written much more about my mental quirks, and more Asperger’s impressions, lately, which really do help as a way to convey what one really feels.

But I’m not the only one. Gary Numan of “Cars” fame, and Craig Nicholls of Australian Rock band “The Vines” have all been quoted as having Asperger’s Syndrome.

Will I ever join them? Who knows?