The following blog is reposted with permission of its author Yuval Levental. It was originally published in the Autism Daily Newscast (http://bit.ly/1F8Z3uP) as well as in the WrongPlanet.net. Yuval has been a contributor to our blog (http://bit.ly/1F8Z3uP)and has corresponded with me for the last couple of years. I am very proud of him. He is very bright and perceptive. At present he is pursuing a Master’s degree in Electrical Engineering. In a previous blog he described the reason for his way of thinking as follows:
For many years, I was a major neurodiversity advocate. I believed the old myths that Albert Einstein and Bill Gates were very similar to me, and that I would become one of them in the future. This was because I never got along well with people and wanted badly to make up for my social deficiencies.
However, as my life changed, it seemed that I was actually lacking many characteristics that they had. Contrary to popular belief, they actually did very well in school, but took alternative routes of their own willingness. Additionally, Einstein was active not in just physics, but in politics, social circles, and loved to play the violin. He had a strong work ethic and attention span up to his death, once saying, “Do not worry about your difficulties in Mathematics. I can assure you mine are still greater.” Bill Gates was very excellent in marketing Microsoft to the masses. Eventually, my own life fell downwards to the point where I decided to search for treatment. This essay is divided into three parts: my life, my experience with neurodiversity, and my search for treatment. Finally, I would say that in some aspects, my condition isn’t that bad at all, and that I have it much better than many. I can certifiably attest though that I am profoundly impaired in attentiveness, organization, and socializing.
According to direct (actual, not estimated) measurements from Quantcast, WrongPlanet, which claims to be the largest forum online for people with Autism and Asperger’s syndrome and their relatives, has hit an all-time low count of A pageview doesn’t represent a unique user, but rather an instance where an onine user visits a website, so a single user can have several pageviews. This is despite the fact that WrongPlanet’s membership has dramatically increased from 2008 to 2012. Additionally, from the same statistics on a different tab, the unique visitor count has also declined by 50%. This is most likely because more and more users are feeling alienated from the site and its goals, and do not feel represented.
At one time, WrongPlanet’s footer stated that “Asperger’s is not a disease” (https://web.archive.org/web/20120715015511/http://www.wrongplanet.net/ accessed April 26, 2015). Many members presumably joined the website on that basis; however, there is no proof that Asperger’s is always or even beneficial. The statement has since been removed. Additionally, the left-hand sidebar at the top on the archive page showed statistics concerning the total user count and daily user growth; that sidebar has also been removed.
One subforum on WrongPlanet is The Haven, which is supposed to offer advice to members struggling with personal issues. Many members there report feeling hopeless, lost, or even suicidal. However, it is rarely suggested on there that neurodiversity might be problematic.
The biggest problem is that only a small recurring group of people with Asperger’s gets presented on the front page (https://web.archive.org/web/20130716180821/http://www.wrongplanet.net/ accessed April 26., 2015). This group includes Alex Plank, who is WrongPlanet’s founder, John Robison, the designer of several famous guitars and owner of a renowned auto shop, and Jack Robison, John Robison’s son.
The frontpage group is generally in favor of neurodiversity, and the vast majority have achieved professional success. They do not represent many other autistics that struggle with basic needs, have no professional success, and/or would like a cure. In fact, a thread called “The unpopular WP members club” , which started in 2012, claims that WrongPlanet has become a popularity contest like everywhere else. It spans over 300 pages with more than 4,600 posts and is still active today.
WrongPlanet also once ran a web series called Autism Talk TV . The series featured Alex Plank, Jack Robison, and Kristen Lindsmith, Jack’s girlfriend. Again, only a limited number of autistics were featured. The series was partially funded by Autism Speaks, which many WrongPlanet members considered to be controversial. There hasn’t been an update in two years, and the WrongPlanet Youtube channel hasn’t been updated in over a year.
Because there is scant evidence that Autism/Asperger’s leads to special talents, many less-functioning members have abandoned the site in frustration, and the higher-functioning members have lost interest over time, as it doesn’t affect their lives much.
Dear Yuval Levental,
I am straining to be diplomatic but, so far as I can judge, it has been impossible for me to engage in collaborative and collegial interchange of ideas with those that advocate for Neurodiversity. It is as if they have trouble accepting that a person with autism would confront them with hard questions.
Is there really a “scientific” report on Neurodiversity?
What could be the reasonably logic behind Neurodiversity in general?
Is intellectual and scientific honesty possible in Neurodiversity?
To whom shall I talk in order to have a commonsense answer?
Whose interests do they have at heart?
To apply the word “variation” to this disorder is to run a great risk, the common risk run by those diagnosed with Asperger Syndrome, of assuming that they know just what autism is. I hasten to add that Neurodiversity does not offer a theory of autism in the sense that Newtonian mechanics, for example, provides a theory of motion. Neurodiversity does not, like the latter, specify a set of substantive principles with the help of which the detailed course of concrete happenings can be explained and understood.
The Neurodiversity Movement, nonetheless, could make a massive difference in the life of a person with AD, by organizing a task force (sort of) that would meet with members of the DSM-5 work group in order to discuss first a complete separation between Asperger Syndrome and Autism and, perhaps, change the diagnosis criteria for the later. Am I too idealistic to hope that this can be achieved?
The APA is the only entity with the standing, capacity, and willingness to undertake a comprehensive revision. For the symptom complex associated with AD diagnosis is related to many psychological diagnoses that, when treated effectively, can result in the disappearance of the “disorder.” It is a dismal thing to inflict AD upon normal children until they become socially withdrawn or depressed. The opportunity to be normal should be offered to them, and they will frequently be successful if parents take the time to scrutinize all the causes – plural, not singular – that might explain their child’s behavior.
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Nice to hear your response. As far as I know, in the way autistics use neurodiversity, there isn’t much evidence. Of course, there are truly successful autistics like Temple Grandin and John Robison, but they only represent a small part of the autistic population. There are many possible causes for autistic behavior.
Different minds certainly have achieved unique results (Einstein had a missing sylvian fissure for instance) but we don’t know for sure what is beneficial and what is bad. Several scientific studies need to be done.
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Many Thanks for your reply.
I’ve spoken several times with John Elder Robinson and he did not have in childhood the symptoms of autism that Temple and me had had. He identified himself as an “Aspie.” And I, along with the American Autism Society, consider Asperger Syndrome not to be autism. There is a great difference between these two. I think that John is making the common error – the one that every other DSM expert warned about – of thinking that a disease listed in the official manual of mental disorders and used as the basis for research, treatment, and reimbursement actually existed.
Autism presents a unique set of problems in terms of how to beat it. First adopt the right attitude. Try to do this in a way that requires imagination to find what in golf is called “the window of opportunity” that is open when a golfer hit a ball into deep trouble, and there is a chance to make a swing with the club. And whenever a person with autism picks up a language, there will be a way out. The big unknown in autism is how much brain development is yet to come, as a child grows older. Given lots of love, family support, and the benefits of appropriate supportive treatments, each child’s prognosis (and eventual outcome) is mainly determined by this crucial factor.
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Claudia Mazzucco makes a number of valid points.I have thought for years that the autism spectrum ought to be broken up into separate disorders,based on underlying genetic or medical conditions or markers,if not done away with entirely.I think the invention of Social Anxiety Disorder in the DSM-V was an attempt to separate some of the highest functioning from the spectrum.Albeit a poorly executed attempt.
I do believe the APA should have asked for input from individuals on the spectrum,as well as from parents and caregivers of those on the more severe end of the spectrum when compiling the entry on autism.
The neurodiversity movement is a very insular group.While they claim to speak for all autistics,they really only represent the interests of the top 1%,5%,or whatever of the spectrum.We also need to keep in mind many in the neurodiversity movement are self diagnosed,and that high profile leaders of the movement have supported or protected the self diagnosed.
Claudia,you are correct,the neurodiversity movement ignores much of the science about autism.Regressive autism,and the various autoimmune and metabolic disorders known to exist with,and greatly contribute to the makeup of,autism,are all ignored.As far as I know the only «scientific» papers on neurodiversity are completely biased papers,in support of neurodiversity,from the likes of Simon Baron-Cohen.The ideas would not stand up to unbiased scientific analysis.
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That is funny. Speaking of Simon Baron-Cohen and Neurodiversity, I’ve recently read an article written by Karla McLaren, “Autism, Empathy, and the Mind-Blindness of Everyday people,” where she speaks derogatorily of Baron-Cohen.
She is some sort of New Age Neurodiverse person, who is thinking of re-naming autism as “awesome-tism.” In this article she did amply contradict herself several times. She wrote, for example, that many of her students were “struggling to stand upright in turbulent and unmanageable currents of incoming stimuli that could not be managed or organized.” Then she adopted Nick Walker’s definition of autism to whom “the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.” If Walker is right, those students that struggle with turbulent and unmanageable stimuli shall be able to master and readily organize it.
I was delighted to have three of my comments deleted, and she did not reply a letter I sent in private. I’ve also had a couple of online interactions with Walker himself. As a result he blocked me twice in Linked-in and Facebook. And I did not do anything wrong! It is ironic that Neurodiversity speaks about being different and when they encounter someone who thinks differently in reality, the first thing they do is to block her.
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