Monday, November 11, 2019

Steve Kapp's new neurodiversity book and it's interesting cast of characters

I've written a non-fiction book devoted to debunking the neurodiversity movement, a phenomenon, as most readers of this blog know, I find quite odious.  My book was rejected by both Jessica Kingsley and Skyhorse publishing.  Despite this, I have had some success in publishing some nonfiction articles about issues critical of ND, including two paid articles, one in The Spectator, and the other in Los Angeles Magazine.  Steve Silberman's book, though not entirely a neurodiversity preachathon, devoted a large portion of his tome to promoting the ND movement.   It was lauded by the New York Times, NPR and was on the best seller list.  Lesser known writer Thomas Armstrong has also published a pro-ND book as has Julia Bascom.

Though, to the best of my knowledge, zero anti-ND books have been published, there's a new pro-ND kid in town.  Stephen Kapp, an autistic with a doctorate in education, has published a collection of essays written by some of the most prominent members of the neurodiversity movement.

This list of august individuals includes Amelia (formerly Amanda) Baggs, Kathleen Seidel, Martijin Dekker, Ari Ne'eman, Dr. Kapp himself, John Elder Robison, and a number of others.

Some of these individuals, I had not heard anything about in years.

Ms. Baggs has an essay about institutionalization.  She's an interesting case as her YouTube video, In My Language, received many hits and she became a prominent figure, appearing in a Wired magazine article and on CNN.  She is completely nonverbal in these posted videos.  After receiving notoriety, a number of persons who knew her came forward and stated that not only was she completely verbal as an adolescent, but attended high schools for the gifted and attended college at age 16, but apparently lost her speech at age 20, an unusual clinical picture for an autistic person.  After these revelations, Baggs went under the radar. With her friend  Laura A. Tisoncik, she  created the website in which they had a cartoon of an aborted fetus in a trashcan with the caption the real meaning of autism prevention, implying that the genetics research done in autism is solely for the purpose of finding a prenatal test so autistic fetuses can be destroyed in utero. 

Interestingly, Tisoncik has an article in this compilation also.  She talks about starting and getting the message out.  Something I was not aware of before, is that she may have been self-diagnosed from what she wrote in the article:

So after I explored the links to electronics partscompanies, I clicked back to the website where the author had said he had a syndrome I’d never heard of called Asperger’s Syndrome. The link led to a website created by a parent of a child on the autism spectrum. I read So that was what I was.

She neglects to say whether she followed up this self-realization with any sort of clinical& assessment. She came to this revelation in the mid 90s when she was in her 40s and apparently never had any sort of ASD dx up until that time.

Meg Evans also has an article.  She was one of the founding members of the autistic self advocacy movement.  She was rumored to be the anonymous blogger, The autistic bitch from hell, who compared autism speaks to the ku klux klan and stated that pro-cure autistics should have their necks wrung and turned into cat food in a blog post with the inflammatory title "autistic uncle toms" She wrote about a website she and her husband created stating in 2005 that a prenatal test that would be found for autism, similar to the one for Down's syndrome in ten years (2015).  This obviously did not come to pass more than fourteen years later.  She had a countdown of the number of years, months and days.  She took down the website in 2011 when it became apparent that her prediction would not come true.  She also claims she heard the word autistic used in reference to her as a child but is vague about diagnosis.  She apparently did not become interested in autism until the year 2002.  It is unclear if Ms. Evans has ever been professionally diagnosed.

Another article is by an individual in the Netherlands named Martijin Dekker, a computer programmer who started the InLV listserve in the earlier days of the internet and one of the first lists that would provide the genesis of the neurodiversity movement along with the formation of the Autism Network International.  I was interested to learn that supposedly Judith Singer and Harvey Blume who are respectively credited for coining the term 'neurodiversity' and giving it publicity were early members of this antiquated website and this is where the word neurodiversity first appeared before Singer wrote her treatises where she first used the word neurodiversity.  Dekker seems to believe that Einstein was autistic and that finding treatments for autism would have prevented Einstein from being born.  He also uses the Hitler and the jews analogy to argue against a cure for autism.  His remarks on an old listserve can be seen here and speaks for itself

An article by Steve Kapp and Ari Ne'eman also appears about their efforts and contributions to the workgroup who devised the DSM V autism diagnostic criteria.  This is when Asperger's was eliminated as a dx category in the US.  The Autistic Self Advocacy Network which Kapp and Ne'eman represented was in favor of including AS under the autism category in the DSM V and elminating Asperger's.  In the article, they state that they were both diagnosed with Asperger's and not autism per se. They talk about the lack of dx for females and minority groups.  The persons in the workgroup countered that there was no evidence that autism was underdiagnosed in women from the autism literature.  However, they state that literature on socialization in women, completely unrelated to autism, proves or at least gives credence to their hypothesis. One of the most intriguing lines from their article was:

ASAN had always insisted on a cross-spectrum perspective and consisted of a leader-ship and membership drawn from individuals who had received all three of the diagnoses (as well as some who had been unable to access a diagnosis due to various disparities)

For years, the autistic self advocacy network has encouraged self dx by stating that their college scholarship program was open to people identifying as being on the autism spectrum.  Many of its supporters have poohpooed the necessity of getting a clinical dx or stated that it was too difficult or expensive to come by for some persons, particularly in adulthood.  Ari Ne'eman and Samantha Crane have both stated they were diagnosed with an ASD.  Ms. Crane's dx, happened in around 2005 at about the age of 22 when she first started attending Harvard Law school.  She stated she never attended a special ed school.  Why, she was not diagnosed earlier in childhood or did not need special ed services is unclear. However, this seems unprecedented in that  this is the first, at least tacit, admission that some of the members and supporters of ASAN are self-diagnosed.  This is despite the fact that this is one of the organizations who has permanent seats on the interagency autism coordinating committee and gives the US government advice on autism policy.>A pertinent question is why, if autism is only a disability via the social model and not the medical model would there be a need for a dx and why would Ne'eman and Kapp work with the committee that wrote the DSMV?

The collection also includes an article by John Elder Robison about his experiences as a scientific advisor at autism speaks.  Due to constant complaints of no autistic input into the organization, they   acquiesced and appointed John Robison, a high school dropout with no knowledge of autism science, to their scientific advisory board.  All the other members had doctoral degrees.  Though Robison has stated he has an autism dx, by his own admission in the article is not terribly impaired

 It was hard to imagine myself as diseased or damaged, but I understood those words made people open their wallets and I knew our community needed help

Robison speaks about how he tried to work with people at autism speaks to change their perspective about autism being a horrible tragedy and wanting to cure the condition.  He claimed that all of the scientific advisors at autism speaks had urged the powers that be to change their mission statement to stop using the word 'cure'.  He speaks of how offended he was by an op-ed piece written by the late Suzanne Wright stating that 'autistic children were lost' and 'needed to be rescued'.  This prompted his resignation from AS. In his article Robison shows incredible contempt for the parents of autistic children whom he claims are running the show and cutting out autistic voices. There are other chapters in this anthology that i've read but it's a lot to summarize in one blog post, so I think I'll end it here. Though I learned a few new things, most of the information Kapp and his contributors provide is not novel and are the same tired talking points of the ND movement, who has nothing but contempt for autistic persons (like myself) who want treatment breakthroughs made and a better life for themselves.  Not to mention parents of severely autistic kids (those who have greater support needs is the way ND puts it) who people such as Robison and others have a callous attitude toward. Steve Silberman has publicized this anthology on twitter, but saying previously that an article written by anti-ND autistic Tom Clements was bullshit and lies and people should read Kapp's anthology instead.

Hopefully someday there will be an anthology or some sort of format where those of us in the #autisticdarkweb anti-ND movement will get to tell our side of the story.


Will1990 said...

What ever happened to that mother of a severely autistic young adult autismseizures something blog? Her son was nothing like these dubious asperger's types. You should check out faithmummy.wordpress a blog by a women about her son has Neurofibromatosis and serious autism along with her daughter. I hate neuro-diversity and those damn "wheelchair users" and "disabled rights advocates"are another source of neuro-diversity nonsense and bad ideas in general that have a negative impact many if not most with disabilties autism or otherwise. Some examples: closure of sheltered workshops and deinstitutionalization and frivilous lawsuits related to the ADA ACT that went wrong.

Anonymous said...

I think many ND are psychopaths

Anonymous said...

Here is the result of that hateful movement:

People with normal lives and only searching for "an explanation" should not be diagnosed; they become a drag for true affected.

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Anonymous said...

" Anonymous said...
I think many ND are psychopaths
November 18, 2019 at 12:52 PM"

I’m starting to believe that, just common decency to have empathy for those worse off, or even if you don’t really care too much secretly, you still don’t publicly dismiss them and pretend they don’t exist, that’s just manners.

They campaign for anti-cure but what do they have to lose if their very hf & like their brain and don’t want curing or at least treating? Does anyone else really care about their social difficulties to force something on them if they work & pay taxes? Just don’t seek treatment, is that a lot to ask?

Really just their shallow ego`s in admitting to themselves they have a disability.

I believe many supremacist ND types score high on the psychopathy chart, they probably would make good Nazi’s and child abusers.

......I'm Anonymous said...

......I'm Anonymous said...

Unknown said...

Asperger's Syndrome used to be very much a real diagnosis, and it's a bit surprising you have never heard of it. I myself was a diagnosed with it at the age of 4.