I posted my second entry on January 20, 2008, where I discussed whether or not being opposed to neurodiversity meant being opposed to human rights.
Ten years seems an appropriate milestone to celebrate an anniversary, but to discuss the issue more thoroughly, some backstory is needed.
In 2002, I was on the national radio show Studio 360, plugging my first (and failed and unpublished) novel, The School of Hard Knocks about an 8-year-old autistic boy’s experiences in an abusive special education school, as well as a satirical take on the Individuals with Disabilities Education Act. An individual named Tim Boucher was so impressed with my interview, he built me a website which became Jonathans-stories.com, where I published some of my short stories and non-fiction writings. It also had a journal section powered by blogger, that I wrote in sparingly.
Some years later, I wrote my initial critique of the movement I loathe so much: Neurodiversity: Just Say No. Harold Doherty read my article and publicized it on his blog. This initiated some controversy among ND proponents who were not happy with my essay. This included the famous autistic autism researcher Michelle Dawson. She stated that she wanted to comment on my article, but that my Jonathan’s Journal did not have commenting and that Doherty would not allow her to comment on his blog. Others wanted to comment. I decided to start a more traditional blog that allowed commenting and I moderated comments.
Michelle Dawson engaged in an online temper tantrum, stating that because I moderated comments, she would not comment on my blog and that I was an opponent to human rights, though she acknowledged she did not know what rights I specifically opposed. I turned off moderation and invited her to comment on my blog, but she still declined.
After some of the nastier ND’s began to be extremely abusive to me, I turned comment moderation back on.
It’s been an interesting decade. I’ve discussed a variety of topics in my blog posts, but the majority of posts dealt with taking on the neurodiversity movement. I began to grow a small following and started receiving several comments on various blog posts.
A variety of coups took place. I found out from Steve Shore that Ari Ne’eman would be in Newsweek. I wrote about this asking for equal time. After Barack Obama appointed Ne’eman to the National Council on Disabilities, he denied that he’d ever said autism was not a disability while the senate decided whether or not to confirm him. I exposed statements where in fact Ne’eman did say that autism and Asperger’s were not disabilities. After publishing them on Gadfly, Ne’eman attempted to re-write history by editing one of the essays where he said autism was not a disability. Left Brain/Right Brain’s Matt Carey publicized the edited version, denying Ne’eman ever stated autism was not a disability Ne’eman, while denying he’d said autism was not a disability, acknowledged he’d made a mistake in the words he used in his essay, admitting that he could have been construed as implying it. He further stated that if that was the worst mistake he’d ever made in print, he’d consider himself lucky.
When someone was using Wrongplanet.net to threaten to carry out a mass shooting, I publicized this in my blog and reported the individual to the FBI. They apparently contacted the Swiss authorities where he lived and he was dealt with.
I’ve received a lot of flack from various people due to my blog posts. I’ve tried to keep a cool head, though sometimes I failed and I regret that. This happened when I was being mocked and insulted on the Whose Planet is it Anyway blog run by “The Autistic Bitch from Hell”. I didn’t turn the other cheek and wrote angry and inflammatory things back. I won’t offer apologies for my behavior, but I will offer regrets.
The media also took an interest in my blogs and writings. Andrew Solomon in his New York Magazine article on Neurodiversity gave me token mention to provide faux balance. He also mentioned me in his book, Far From The Tree. Benjamin Wallace also mentioned me and what I’d written about Simon Baron-Cohen in another New York Magazine article. A journalist in Australia also mentioned me on the website of a public television station article. A British journalist was going to interview me for the Sunday London Times, but that fell through. I published an article in Los Angeles Magazine. I was also on the NPR show, morning edition talking about donating my brain to science (regrettably Autism Speaks). Robia Rasheed used this to inspire the first scene of the first episode of her Netflix show Atypical. My desire for equal time in Newsweek was also granted some years later and the magazine did a profile about me, though they insulted me in the print edition with the title a hater’s guide to self-hating.
Though I can point to a few accomplishments, there are also the failures. For the past ten years, I’ve blogged against the neurodiversity movement, trying to show how flawed it is. Despite this fact, my pleadings seem to have fallen on deaf ears (though I may have figuratively preached to the choir who embraced some of my messages).
I never dreamed that the federal government would embrace neurodiversity and appoint several ND proponents to government posts relating to autism and appoint zero pro-treatment, pro-cure advocates. I never dreamed they would rename the Combating Autism Act to the CARES act because the term ‘combating’ offended neurodiversity proponents.
I never dreamed that the Autism Society of America would have people like Alex Plank and Steve Silberman as keynote speakers at their conferences.
I never dreamed that Autism Speaks would give up the search for a cure and prevention and change their mission statement, and appoint Nds to their board of directors However, given their half million dollar grant to Laurent Mottron, their putting John Robison on a science advistory board, and their funding of Alex Plank’s inane Autism Talk TV, I guess it should not have come as a shock.
Last but not least, I never dreamed the media would fete Steve Silberman and his book Neurotribes, enabling it to become a New York Times best seller.
I suppose nobody ever said that life was supposed to be fair.
Another interesting event happened yesterday which appropriately gives good culmination to my tenth anniversary. At yesterday’s meeting of the Interagency Autism Coordinating Committee, John Robison mentioned comments I’d written to the agency, where I said the U.S. government should concentrate on doing science research that will lead to treatments and cures for autistic individuals and not concentrate on neurodiversity and accommodations. He also noted the comments I made that he and fellow IACC member Samantha Crane should provide proof of a professional diagnosis of autism or forfeit their seats on the committee. Ms. Crane also mentioned the fact I’d written to Dr. Joshua Gordon about her and JER’s attitude, and that she should release her medical records to Dr. Gordon, showing a professional dx as a condition of her serving on the IACC. She stated she would not release her medical records. In some subsequent interactions on twitter she stated that she was not appointed due to her autism, so her diagnosis had no relevance.
The reason I was nominated want my diagnosis, that's why they didn't ask for it— (((Sam Crane))) (@Samanticka) January 17, 2018
It's because I'm a representative from ASAN, a national autistic self advocacy organization, where I am director of public policy.
I am not there to talk about my own personal life.
This is outright dishonesty on Ms. Crane’s part, as the law specifically states that autistic persons are to be appointed to the IACC, ergo a large part of the reason she and Mr. Robison are there is because of their alleged diagnoses of autism.
I don’t understand how two such functional individuals, one a graduate of Harvard Law school, merit a diagnosis of autism, and I feel they should explain it to the public they serve as well as provide the IACC with documentation from a clinician they’ve been diagnosed. I don’t believe this is asking for too much. However, Robison and Crane think so, though Crane stated she'd release her medical records to the IACC if asked, but not the general public. In addition, my emails to Joshua Gordon, the acting secretary of HHS, and president Trump asking them to do something about this remain unanswered. This is the way it goes.
Ms. Crane and JER are not the only individuals whose autism I’ve expressed skepticism over. My detractors have occasionally turned this on me, saying that people could express skepticism toward my alleged disability and say Jonathan Mitchell can’t be autistic for xx reasons. I should provide some sort of proof of my diagnosis.
Though, unlike Crane, Robison, and others, I’ve never used a dime of taxpayer money to promote my agenda, my critics are absolutely right. It was a mistake for me to question others’ dx without providing some evidence of my own. Therefore I’ve rectified the situation and uploaded some paperwork from the Courchesne research group of my diagnosis that I used in my Disability case several years ago. I welcome anyone whose autism I’ve expressed skepticism of to do the same.
John Robison has repeatedly criticized me for only writing negative things about the neurodiversity movement on my blog and not trying to do something positive for the autism community. I’d much rather be a brain researcher, geneticist, or a wealthy philanthropist and do research to find answers for developmentally disabled people, or fund the research or fund jobs programs and housing for autistic people than engage in angry tirades against the neurodiversity movement. However, I don’t have the millions of dollars of autism speaks. Unlike James Simons, I’m not a multibillionaire, and I sure don’t have the resources of the federal government.
My ambitions to go to graduate school and become a brain researcher, experimental psychologist, or what not, didn’t pan out, so I can’t do research that might help ASD people at some point in time.
However, I do feel my work in exposing the nastiness and dishonesty of the ND movement is important and I feel it does good to point out all the harm they’ve caused and how their influence in both the private and public sector are impeding research into autism that could lead to scientific advances that can help those of us affected and their families.
Contrary to what some of the nastier Nds have asked me and/or written about me, I’m not a parent disguised as an autistic person writing these things. I don’t forge positive comments on my blog. I’m not paid to write these posts by Autism Speaks, Generation Rescue, Age of Autism, or Jill Escher or anyone else ND’s have accused me of accepting money from.
So, though I’m not blogging as much anymore, I will continue to speak out against ND from time to time, and maybe, on occasion, write blog posts on other topics also. Anyway, happy tenth anniversary to Autism’s Gadfly and We don’t need no stinking neurodiversity.
Addendum: Now Ms. Samantha Crane is stating that I'm harassing the IACC by writing invited public commentary which is polite albeit critical of some of its members and the organization's procedures:
Moreover, you've already complained to IACC and been told to mind your own business. You are free to keep harassing them if you want, since that is your First Amendment right. But you're not going to get anywhere bothering me on Twitter about this. No means no.— (((Sam Crane))) (@Samanticka) January 18, 2018
Just in case you didn't see this on Facebook - Crane says that her diagnosis played a role in her appointment, so she's not telling the truth
Oh crap, somehow I missed this. I started blogging back in 2008 too. I remember you writing blogs about my first articles for AoA.
well thanks and happy anniversary to you too, though I don't believe vaccines cause autism in most cases, though hannah Polling and a few others may have had some bad reactions to vaccines and caused something similar to autism
Happy 10th Anniversary Gadfly! As the mother of a profoundly affected young man with autism, I do appreciate your blog. Autism, at the moderate to severe end of the spectrum, is very challenging for the individuals affected and their families.
I know the neurodiversity movement claims to "care" about all individuals with autism. But I have yet to see anyone with Aspergers who actually provides hands on support, practical help to severely affected individuals, or to their families. Usually there's just criticism about the families, particularly the mothers.
And particularly heartbreaking for me, when my profoundly affected son has been around Aspies, he is ignored.
Yes, that's par for the course for those Aspies, but mild autism, such as what I now have, though I was more severe at one time, is also very challenging for the individuals affected and their famlies as well. Thanks for your wishes.
I agree that milder forms of autism also come with their challenges and I don't mean to diminish yours. But I don't feel that the issues surrounding severe autism get the attention they deserve. At least that's my experience - and I've been in the autism trenches for 25+ years since my son was diagnosed at age 4.
I just don't see much recognition - in the mainstream media or social media or the blogosphere about severe autism. I know parents who have adults with autism in diapers; who've dealt with fecal smearing; whose children have profound intellectual disability, and an almost total inability to communicate (even with the best augmentative communication). There are kids and autistic adults who are self-injurious (my son hit himself so many times on the leg as an adolescent that the hair fell off);autistic individuals with severe aggression (I'm sure you're familiar with the Sky Walker and David Adam Wilson cases - where autistic young men killed their parents). And then there's destruction of property (my son destroyed his computer and punched holes in walls).
The worst of all that - an NDer once told me that it was my fault that my son was aggressive and self-injurious because I didn't love and accept his autism.
yes, I agree, severe autism does not get much publicity, though I guess most of the increase in autism diagnoses is high functioning cases, and issues of savantism and things like that are more appealing to the general public.
Remarks like the ND made are pretty typical I guess
Thanks Jonathan, although my tenth anniversary won't be till September. Autism Investigated's tenth anniversary won't be until 2023!
I have been diagnosed with some autism and mine was worse when I was very young. I think help from people around me made a big difference, though people have hurt me and almost caused me to go into progressive meltdowns. I have been diagnosed with some autism and mine was worse when I was very young. I think help from people around me made a big difference, though people have hurt me and almost caused me to go into progressive meltdowns.
Post a Comment