Neurodiversity as seen in the book “In a Different Key”

The following blog is written by Yuval Levental, a reader and contributor to our blog site. At present Yuval, who is on the autism spectrum, completed a master’s degree in Electrical Engineering and is interested in doing research on Transcranial Magnetic Stimulation (TMS). He started a job in Information Technology where he answers questions and repairs computer hardware and software. Yuval has previously written an essay at corticalchauvinism.com where he discussed his life, views on neurodiversity, and a couple of autism symptoms (https://corticalchauvinism.com/2015/01/14/visualizing-neurodiversity-breathing-for-treatment/).

I asked Yuval to describe himself so that the reader would get to know him better. This is what he said: I am a person on the autism spectrum who advocates for treatment or a cure, because the evidence for autism as being positive is meaningless in most cases. I hold a Bachelor’s degree in Electrical Engineering from Michigan State University and a Master’s degree in Electrical Engineering from ESIEE Paris. Through researching the cause of my autism, I have developed interests in physiology, cellular biology, and neuroscience. In the quest for a cure, I have successfully progressed by attempting to introduce more potassium and less sodium in my diet, and have recently undergone Botox which mitigated my symptoms. Additionally, I like to spread awareness of arguments against Neurodiversity through social media and Wikipedia. Other hobbies of mine include recreationally solving complex math puzzles, traveling, eating new foods, and learning about different cultures.
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In a Different Key: The Story of Autism by John Donvan and Caren Zucker is an excellent book on the history of autism. The book is very well written, and for the most part, stays away from sensationalism. This is in contrast to Neurotribes by Steve Silberman which is overly verbose and glorifies autism through speculative diagnoses of famous figures, while simultaneously ignoring the negative aspects of the condition. Silberman went as far as once trivializing head-banging and diaper-wearing for lower-functioning autistics claiming that everybody has challenges in life and stating that “Disability is part of the human experience.” (http://www.forbes.com/sites/tarahaelle/2015/12/17/why-you-should-buy-neurotribes-for-everyone-on-your-christmas-list/).

Despite the many positives, I still found issues with how In a Different Key portrays neurodiversity’s advocates in an overly positive light. In effect, Chapter 44, Finding a Voice, positively portrays the Wrong Planet, the autism and Asperger’s forum founded by Alex Plank. This is done by claiming that “He built it for one reason: he wanted company” and that it was very easy for people with autism and Asperger’s to socialize there because of the lack of face-to-face interaction. In reality, the site for many could be highly biased and very tense in nature. One reason was that at one time, Wrong Planet’s footer stated “Asperger’s is not a disease” (https://web.archive.org/web/20120715015511/http://www.wrongplanet.net/). This blunt view could obviously give a false impression of the expected outcomes of Asperger’s, and lead people to give vague advice for how to solve the problems of autism. A more realistic view of autism is that the unemployment rate for people on the spectrum was found to be much higher than other disabilities in a study, with only 60 percent employed in their twenties. (http://www.npr.org/sections/health-shots/2015/04/21/401243060/young-adults-with-autism-more-likely-to-be-unemployed-isolated).

Contrary to the claim that the Wrong Planet community is welcoming to all autistics, there is a thread named “The unpopular WP members club”, a place for Wrong Planet members that feel that they don’t belong there (http://wrongplanet.net/forums/viewtopic.php?f=24&t=188409). Bullying is a common problem on the Wrong Planet, with many dissenters getting attacked. Jonathan Mitchell, for instance, was banned for expressing opposition to neurodiversity (http://autismgadfly.blogspot.com/2008/09/banned-from-wrongplanet-forum.html).

The chapter also glorifies Autism Talk TV, a web series produced by Alex Plank and Jack Robison about autism. However, it should be known that despite the fact that Alex Plank opposed Autism Speaks for years, part of the series was funded by Autism Speaks (http://autismgadfly.blogspot.com/2010/08/autism-speaks-picks-up-part-of-tab-for.html). Several Wrong Planet members criticized Plank for accepting this source of funding (http://autismgadfly.blogspot.com/2010/08/autism-talk-tv-saga-gets-uglier.html).

ASAN, low-functioning autististics, What is really disappointing is that the chapter claims that before Wrong Planet, Temple Grandin was the only speaking autistic advocate in the world. This ignores many other figures such as Thomas A. McKean, who was a famous autistic speaker in the nineties (https://en.wikipedia.org/wiki/Thomas_A._McKean). In 2006, he wrote an essay called “A Danger in Speaking” which claimed that autism awareness was being taken over by individuals that said that a cure is never right (http://www.thomasamckean.com/articles/speaking.htm). Other famous figures from those times include David Miedzianik, Donna Williams, and Sean Barron.
However, this chapter does reference a New York magazine article Autism Spectrum: Are You On It? by Benjamin Wallace, which claims that there was a boom in self-diagnosis and that the term Asperger’s had become a shorthand term for eccentric behavior. In response, Donvan and Zucker said that while some of those people appear normal, they have to work hard to do so.

Chapter 45, Neurodiversity, is less biased, focusing on Ari Ne’eman and the Autistic Self-Advocacy Network (ASAN). Ne’eman was strongly opposed to a cure, even for low-functioning autistics. While this chapter discussed the problems with his claim that low-functioning autistics are not disabled, because of all the support that they need, it should also be known that Ne’eman was only diagnosed at age 12 (http://www.jta.org/2015/01/26/news-opinion/united-states/autism-self-advocate-ari-neeman-recognized-for-work-on-inclusion-of-people-with-disabilities), and is described in the chapter as “articulate” and “persuasive”, characteristics absent from many low-functioning autistics.

With regards to ASAN, the chapter mostly focuses on the “Ransom Notes” campaign, where ASAN successfully took down an ad campaign portraying autism and Asperger’s in a negative light. This was declared a victory, but what about other accomplishments that ASAN had achieved? The other achievements according were supposedly protesting Autism Speaks, which provides funds for research into treatments and cures for low-functioning autistics, and increasing ASAN membership.

However, aside from providing social networking opportunities, Ne’eman had no real solutions for autistics. For instance, on matters of employment, he suggested “Social pleasantry should be eliminated as criteria for hiring and a good job evaluation” (http://autismgadfly.blogspot.com/2009/09/ari-neeman-gives-input-on-autistics-in.html). This is an interesting argument, as Ne’eman considers talk of a cure to be a social unpleasantry, and provides no evidence that it will beneficial to eliminate social pleasantry from the hiring criteria. Even some Wrong Planet members have criticized ASAN’s lack of attention towards a wide variety of issues other than their own interests (http://wrongplanet.net/forums/viewtopic.php?t=269996). Additionally, it should be known that he gives himself frequent salary raises, and the ratio of his executive salary to the overall organization worth is very high (http://autismgadfly.blogspot.com/2016/12/asans-latest-990-precarious-financial.html).

In the end, In a Different Key is still a worthwhile book, which gives a very understandable, descriptive history of autism. They do a good job in criticizing some of neurodiversity’s perception of low-functioning autistics, which Neurotribes did not. However, in some significant aspects, they still hold neurodiversity in a positive light. Overall, it would be better if they had portrayed a wider spectrum of viewpoints concerning the ideas and initiatives neurodiversity’s advocates presented.

One response to “Neurodiversity as seen in the book “In a Different Key”

  1. I first “met” Yuval a couple of years ago on Facebook a few years ago, we are both frequent commenters on Johnathan Mitchell’s page.ASAN,Silberman,Wrong Planet,and others in the neurodiversity movement have created a very specific picture of what people with Aspergers or high functioning autism are like.People who are high functioning enough to complete a college degree,are not supposed to want cures or treatment for their autism.The neurodiverse mindset also ignores those who are high functioning,with comorbid mental illness.As someone with close family members in this situation,I know just how disabling this can be.

    Johnathan is not the only one to be kicked off Wrong Planet.Around the same time,I posted a lengthy post describing my history in detail.All of my illnesses,all of my regressions,developmental delays.learning disabilities.and behaviors like head banging.I then asked if there was anybody else out there like me.This was,of course,just before I had any real medical and genetic testing,and did any studying of the medical literature.

    My post caused an uproar.I was accused of making up my story.That it was unrealistic anybody with autism could have as many problems as I have had.I was banned,and my post was scrubbed.I really wish I had the foresight to print the thread.I knew very little at the time,but I have since gone on to receive diagnoses of multiple genetic,metabolic,and autoimmune disorders,including high levels of folate receptor autoantibodies.Treating the last condition eventually reversed my autism.

    In order to figure out my test results,I started to dig into the medical literature about autism,and related conditions.I became very interested in the science,and have become as knowledgeable as many autism doctors.This is research and science that neurodiversity is willfully ignorant of,in part because they wrongly see finding treatable causes of autism,metabolic,immune disorders,etc,as genocide against autistic people.

    I had not been back to Wrong Planet since I was banned for this posting,but it is good to see that thread about ASAN.Any cracks in the façade of neurodiversity is welcome.

    Bigots like Silberman and,yes,Ne’eman,will never acknowledge,or reach out to seriously disabled autistics,and their families.

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