Wednesday, August 25, 2010

three identities for female neurodiversity activist?

As regular readers of autism's gadfly know, the neurodiversity movement in general and the autistic self advocacy network in particular are full of dirty tricks such as playing the murder card. The internet, however, gives a dirty trickster the opportunity to play their tricks, using multiple identities and pretending to be other people.

I have just read an interesting post on the midnight in Chicago blog concerning three well known female neurodiversity activists. I believe this post deserves a shout out on autism's gadfly as there is apparently some controversy that these individuals could be an actual holy trinity of one person.

The post describes Meg Evans, a well known neurodiversity activist who is an attorney, married to a man named Brian K. White with two children, lives in Ohio and works in the publishing industry. She is the secretary of ASAN, just below Ari Ne'eman and Scott Robertson in chain of command.
The post also talks about another female neurodiversity activist named Bonnie Ventura who also goes by the moniker Ventura 33 and has been a moderator of Aspies for Freedom and has a fan fiction site where stories are published by various authors and are given a star trek bent. She also has a website named Aspergerian pride. I gave Ms. Ventura consent to publish one of my stories, but more about that later.

By a strange coincidence Bonnie Ventura has a few things in common with Ms. Evans. She also is married and has two children and lives in Ohio, and works in the publishing industry. Like Ms. Evans she was considered to be autistic early in her childhood. Of course coincidences do happen.

The author of the blog post goes on to claim that web pages that Bonnie Ventura hosts have as their registered owner a Meg Evans. More interesting is that Meg Evans' husband, Brian White has a webpage which has a link about his wife, Meg. On Meg's page, she states you can check out her fanfiction site and then it gives a link that goes directly to Bonnie Ventura's site. It would appear indeed that Meg Evans and Bonnie Ventura are in fact the same person, if not, there is a very strange coincidence.

Many are also familiar with the rumor that the identity of apparently retired neurodiversity blogger "the autistic bitch from hell" is in fact Meg Evans. Allegedly the autistic bitch from hell wrote a post on one of Kim Womble's blogs and inadvertently signed her name Meg Evans, though I have never seen irrefutable documentation for such.

So, it would seem there is a strong possibility that we do in fact have a holy trinity, Meg Evans, Bonnie Ventura, and the "autistic bitch from hell" being the same individual.

The "autistic bitch from hell" has, in the past, made rather controversial statements first alleging that the only thing on Autism Speaks' agenda was finding a prenatal test so that autistic fetuses could be aborted. Also, she once stated that autistics who don't happen to agree with her on certain things should be taken out and shot or strangled to death and turned into cat food.

The reason this blog post interested me so much is that I had some positive experiences with Bonnie Ventura more than two and a half years ago, just before I started this blog. Before I started autism's gadfly I wrote an article which I posted on my previous blog, Jonathan's Journal, urging individuals to reject neurodiversity. Later I modified this piece somewhat and put it as one of 9 articles in the nonfiction section of my website. Someone calling himself "Robert Montgomery" alleged in a comment on Harold Doherty's blog that I was a fraud because I could not have gone to a special education school in the 1960s, as there was no special education until the education for all handicapped act was passed in 1975 and made the strong statement about me that like all "house autistics" I lied about my past. I was able to document my former alma mater had been established in 1948, making him eat his words.

Not long after this I got an email from a Ventura 33 stating that she had grown up in Los Angeles in the 1960s and had problems with elopement in her regular education school and that there was some talk in fact of a special education placement for her and recommending such to her parents, though like probably the majority of NDs, she never attended a special education school. She stated because of this she believed me and I should not pay attention to a "loud mouth" like Robert Montgomery and that I should not judge all persons in the ND movement just by persons like him. She also asked if she could publish my short story "Mr. Twiddle" which she had enjoyed on her web page and sort of modify it into a star trek type genre. I consented.

I probably would not have consented now in light of the evidence that I have seen that Bonnie Ventura may in fact be "the autistic bitch from hell". Are all these three people the same individual. I don't know for sure, but there are some strange coincidences. Of course, as I said before, this was particularly interesting based on the experiences I had with Ventura33 in the past.

Monday, August 23, 2010

Los Angeles Magazine autism slide show

Here are some photos from the September issue of Los Angeles magazine which is partially devoted to covering autism in Los Angeles. These include some photos of your overweight but humble blogger. Also I was working on the computer at the time the photographer came over so I was wearing my reading glasses which I don't always wear. Don't know if and when the short article by me they published will be online but I will keep Gadfly readers posted of future developments.

Sunday, August 22, 2010

Will autism speaks get my brain?

I still remember at one of the autism society of america conferences I attended, I met with a representative from the autism tissue program, which is a program affiliated with that Microsoft of autism research, autism speaks,that collects postmortem brains of autistic persons for analysis.

I signed some paperwork, gladly donating my brain to science in the event of my inevitable passing, whenever that would be. They also gave me a stickie to decorate my refrigerator, which is still a prominent ornament I see everytime I get some food out.

To date, genetic studies have been of limited value in clarifying the etiology of autism. The genotypes which can lead to similar though not necessarily identical phenotypes are probably too heterogeneous and the sample sizes that can be obtained to date have not been large enough to show many unifying genetic etiologies. For obvious reasons, there are no really good animal models of autism, though research similar to the type Harry Harlow did on rhesus monkeys might produce such a model if a scientist ever wants to pursue that line of work. Also Jocelyne Bachevalier has done some interesting work on lesioning the amygdala and possibly other parts of the limbic system in monkeys for a putative animal model of autism, but there are also obvious inherent limitations in this work. MRI scans and fMRI scans are also most likely quite limited in what they can tell us about anomalies in autistic brains.

Autopsies might be our ace in the hole for being able to get to the bottom of the underlying causes of autism and help in finding more advanced treatments, prevention or even a cure. One problem with this is that autistic persons live out their natural lives and the oldest persons diagnosed with autism might be like 75 years old now (though I suppose an older person could be diagnosed retrospectively), so there is a dearth of available brains. For this reason probably not much more than a few dozen autistic brains have been autopsied. I wrote an essay arguing that we needed to locate autism's so called "hidden horde" if possible so we could have as many post mortem brains available for autopsy as possible. Of course the problem with so many different types of "autism" being out there, even if we could get more brains they might not provide elucidation on the etiology. If enough brains were obtained, though we might get a general idea of what was wrong in a significant subset of at least some autistic persons.

Though of late i have been lax in reading more of the recent literature in autism, many years ago I did read the studies with the first autopsy reports in autism including a study by Williams et al which did not find abnormalities in four brains, but did allude to some cerebellar problems in at least a couple of the autistic brains. Then came the study at UCLA by Ritvo et. al. who found reduced Purkinje cell counts in the cerebella of some deceased autistics. They only looked for Purkinje cells and did not look for granule cells or other types of neurons which may have limited the studies potential for usefulness. Last but certainly not least I read the studies by Bauman and Kemper showing the various problems with the cerebellum and limbic systems in autism. Later, I seem to recall that David Amaral of the MIND institute did some studies of postmortem autistic brains that showed differences in the amygdalas between autistics and normal controls (no offense intended Larry Arnold).

About 9 years ago, Margaret Bauman was in town and gave a lecture to our support group. I knew that because of new techniques developed that the etiology of Parkinson's disease had been discovered, damage to the nigrostriatal bundle, the main dopaminergic pathway of the brain. I asked her if enough brains were available for autopsy in autism if some day we might have the same understanding of autism's etiology as exists in Parkinson's. She seemed to believe that the answer was yes.

Later I worried about how autism speaks would be able to obtain my brain when I passed away. Though my parents are both still living, the likelihood I will outlive them is not low. I don't have a terribly close relationship with my sister who lives about a thousand miles away from me. So, who would know that I willed my brain to science and that it would be imperative to get it out of my skull and preserve it in formaldehyde so it won't spoil immediately. I knew that though I had good intentions, I might never be able to carry them out posthumously. Of course one thing I did not have to worry about is having my feelings hurt if Socrates or some other members of the neuroperversity (a tip of the gadfly hat to Billy "Lurker" Cresp for that term) movement called me a traitor and a "house aspie" for having the temerity to donate my brain to an autism speaks affiliated project, as I would be dead and it would not matter.

Slowly I started to become disillusioned with AS.

I learned that they donated half a million dollars to a rogue scientist who stated that their goal of curing autism was nonsensical and also stated that autism was not harmful and was not a disorder but merely a difference.

They implied their insurance lobbying would make a difference between autistic children having friends and not having friends without providing any proof.

They put on a dog and pony show talking about how important it was to employ autistic persons yet did not employ a single autistic person in their organization or do anything to actually help a person with autism find a job.
Last but certainly not least it would seem AS engages in cronyism.

I was a bit distressed about the logistical problems of autism speaks being able to get my postmortem brain, but maybe it does not matter after all.

Friday, August 20, 2010

Gadfly published in Los Angeles Magazine!

Just a month short of my 55th birthday I have sold my first nonfiction article to a major magazine. Los Angeles magazine has done a feature about autism in their latest issue. In a short article on page 139 of the magazine I attempt to take to task the neurodiversity movement and try to explain as tactfully as I can why I believe they are wrong about not needing a cure for autism. It shows a photo of me in my bedroom with my dresser drawers slightly ajar in typical lack of executive functioning autistic fashion.

The other day they wrote me saying that they were interested in putting additional photos of me on their web page as well as a bit more information about me and asked me a couple of questions which I answered. So, I don't think the article or anything more about me is on the web yet, but I will either edit or put an addendum to this post when that happens. In the meantime I hope that friends and foes alike will go to their local newsstand and if available buy a copy of the magazine and check out the magazine and the article. To avoid confusion, in case the August issue is still on some stands, it is in the September 2010 issue of Los Angeles Magazine.

Thursday, August 19, 2010

autism talk tv: the saga gets uglier

I have just discovered a somewhat dated thread on the web page which has the slogan "autism=good" in the title bar of the browser when one logs onto this stellar website.

It goes on with the members of wrongplanet questioning why Alex Plank would go hat in hand to autism speaks, an organization who has described autism as a global health crisis and clearly does not share the "autism is good" philosophy of WP, why Alex Plank and his friend Jack "Cubby" Robison would solicit (and be given) funding by AS for their autism talk TV show.

John Robison has some choice words in defense of Alex Plank and his son Jack:

My joining the Autism Speaks science board was a gamble. I know many of you criticized me, but I believe I am succeeding in what I set out to do. I am able to advocate for research that helps people on the spectrum, and I can speak against research I oppose. Any of you, of course, can do the same thing, but I can do so as an insider, where my vote counts. Yours doesn't. At least not yet.

Gadfly wonders what it is that Robison set out to do. He certainly succeeded in getting autism speaks to donate to a cause that involved his own son for a very questionable activity and a very questionable organization which would, at least on the surface not share the philosophy of AS and the relatives of autistic children who donated money and went on walks who most likely would not agree with wrong planet's "autism=good" message. If he has made contributions in the scientific realm, he has neglected to write about it on his blog or anywhere else that I know of.

Robison ends with a statement that in my opinion would make Marie Antoinette and her "let them eat cake" statement seem philantrophic by comparison:

In my opinion, this whole tempest over a few thousand dollars of underwriting support is just ridiculous. If Autism Speaks is so bad, do you want to pony up the money to fund Autism Talk TV instead? Alex would not need sponsors if you guys were donors

Of course one wonders if Robison feels this way and it is just a few thousand dollars why a successful businessman and a best selling memoirist could not have ponied up the cash himself, particularly when his own son is one of the two principals. The answer of whether or not he contributed follows. Certain posters on wrong planet correctly pointed out to Robison that they were on disability, living in poverty and did not have the money to contribute.

Robison writes:

So why attack Alex over this?

Why attack Autism Speaks for a gesture that brings something interesting and useful to our community?

First of all, it is only Robison's opinion that these videos are useful or even interesting in any manner, except that they show how corrupt and unethical both autism speaks and the neurodiversity movement are. I certainly do not share Robison's opinion.

Why attack Alex? Because, Alex has done nothing but criticize autism speaks. He has a certain constituency on wrongplanet that have donated money to the website who don't like autism speaks. He has libeled the organization by implying they are deliberately trying to develop a prenatal test to abort autistic fetuses. He libeled them by printing the false story that Zach Lassiter's t-shirt business was closed down by autism speaks using intimidation tactics. Then later goes on to make flattering statements about AS that have no factual basis coincidentally right after he received funding from this organization that he clearly despises and forsook his principles over.

I attack autism speaks, because they have parents who have children who will never function the way Robison or Plank do and they participated in walks in good faith believing the money would be funded to do something to help their kids function better rather than having a person who has a slogan autism=good travelling around the country at their expense making videos which so far only seem to extol the virtues of autism and do nothing to present the uglier side.

Robison continues:

We're studying new therapies to help adults with social skills, and many other things. We have some really exciting work going to help autistic people who have severe speech difficulties. You can read about all that on my blogs.

I can't really recall Robison ever writing anything about this on his "look me in the eye" blog. If anyone can point to me where he has ever written anything about his work with autism speaks which entails studying social skills or speech therapy for autistics or any science I would be interested in knowing about it.

So far autism talk tv has aired seven videos, it is only on the last two or so that we see the oil and water mix of autism speaks and wrong planet logos on the credits. But apparently Robison has partially picked up the tab for at least the first few videos:

I paid for them to go with my personal funds, so if anything, I personally sponsored those first videos but we did not say that when we put the credits together. Autism Speaks will reimburse some of my costs with their underwriting grant.

So we see that Robison did have the ability to pay for his son's( and son's friend's) extracurricular activities. Yet, after accepting an unpaid position on the board of autistic speaks, after making scads of money in successful businesses and having a book on the new york times best seller list and likely being paid at least a six figure advance for his forthcoming book, he then goes hat in hand and accepts money from this organization for his own personal use. The words cronyism and conflict of interest come to mind.

Though I have had many differences with "Socrates" of the new republic blog. He makes some valid points that perhaps Plank and Robison, junior could add episodes of kids in special education schools or very low functioning kids in group homes in one of their autism talk tv episodes. I will await with bated breath to see if these two kids will do anything in their autism speaks subsidized activities that does not have an "autism is beautiful" message behind it.

So we see that autism speaks is an organization that funds scientists with a neurodiversity perspective who claim autism is harmless, they fund a public relations campaign showing how great it is to employ autistic people yet, don't have one paid employee with autism in their organization and have never contributed to the employment of a single person on the spectrum as far as I know, they fund the insurance reform efforts in various states, running public service announcements claiming this work is the difference between autistic children having friends and not having friends and neglect to provide any evidence that this is the case. It is this blogger's opinion that the funding of autism talk tv and giving John Robison free money is possibly an all time low.

Friday, August 13, 2010

Marc Sirkin's lame excuse for Alex Plank

In my previous posts in the last few posts, I have wondered about why in the world an organization that claims they are funding research in the hopes of mitigating or possibly curing the horrible affliction called autism would fund videos done by Alex Plank. In fact, yesterday, I emailed Mr. Marc Sirkin who is apparently in charge of media matters for autism speaks, Peter Bell, vice-president of autism speaks who apparently has developed a friendship between Plank, Robison, Sr. and Robison, jr. and to the contact address for autism speaks itself, asking why they would fund such an endeavor.

Though my email still remains unanswered by any of these three entities it seems that Mr. Sirkin has responded here. He gives what in Gadfly's view is a rather vague statement that somehow these videos are improving the dialogue among various members of the autism community and that a video that he prominently displays on the blog post in which an interview is conducted with a journalist of a major magazine which helps trivialize this disability and which the journalist for this magazine makes sweeping statements without bothering to do his homework and implies that the creation of a significant software company and the well-known Craig's list were due to attributes of the autism spectrum. He states that the financing of these videos are somehow helping in this mission to achieve the goal of addressing autism which he (unlike Alex Plank and other ND's) calls an "urgent health crisis". How any of these autism talk TV videos, particularly the latest one featuring the previously mentioned journalist are helping in this regard is unclear to gadfly. I am wondering how the headbanging, finger chewing nonverbal autistic children of certain parents who contributed money to autism speaks and participated in their walks are being helped by Plank's videos. Another salient point is that Sirkin makes is the panned (apparently macro) statement of Plank's that autism speaks is in no way influencing the content of the videos as if this has any significance or is relevant to anything. Of course Plank's
singing a completely different tune and praising the organization which previously was anathema to him goes unmentioned in Sirkin's response.

John Robison's interesting duties as member of scientific advisory board of AS

As most in the autism blogosphere know John Elder Robison has been appointed as a member of the scientific advisory board of autism speaks, his apparent sole qualification for this position being that he wrote a best selling memoir about his life with Asperger's syndrome. In his book Robison claimed that a cure for Asperger's was not needed He went further than saying that he desired no cure for himself but that also no cure was needed for anyone else with condition-the fact they might be too impaired to make $100K a year as an engineer, be successful business people in automechanic enterprises, be able to write memoirs that appeared in the New York Times bestseller lists was beside the point.

Robison later claimed that this did not mean he did not care for others on the spectrum who happened to be less fortunate than he was. He claimed he was interested in reviewing scientific research proposals for autism speaks that would help in ameliorating the more disabling aspects of autism. The start of Robison's affiliation with AS was not propitious being he immediatelystuck his foot in his mouth implying that he might know more about what was best for autistic children than their own parents, which naturally Harold Doherty of the autism in New Brunswick blog and MJ of the autismjabberwocky blog took umbrage to.

I have yet to see how Robison in his capacity so far with AS has contributed to the betterment of autistic person's lives or made constructive suggestions on which science should be funded or how science should be done by autism speaks which might make it possible to ameliorate some of the more disabling aspects of autism which he stated was his goal in spite of stating that a cure for at least some ASD's was not necessary for anyone at all in his book.

It would seem however that based on Sirken's post and lame excuse for Plank and company that Robison has gone out of his scope in concentrating on the science of autism speaks and has instead chosen to spend more time pursuing media endeavors rather than science and in a case when his own son is one of the two principals involved. He apparently urged autism speaks to fund Alex Plank's endeavor which they agreed to do.

I have left a comment on autism speaks blog. In case they mod it out and don't approve it. I will reproduce it here:

Hello, Mr. Sirkin. The funding of autism speaks of this young man’s media endeavors when he has libeled your organization, implying your main goal is to develop a prenatal test when there are severely autistic persons who bang their heads and can’t speak. Others who are higher functioning such as myself who can’t hold down a job is a slap in the face, to all of the good people who donated money to your organization and participated in your walks as a matter of blind faith, so that this horrible disability could be mitigated or possibly cured.

No, Mr. Sirkin, your excuse does not cut it with me. If Peter Bell or anyone else from autism speaks responds to gadfly concerning this outrage, I will keep the readers updated.

Thursday, August 12, 2010

Do Bram Cohen and Craig Newmark have Asperger's?

One of the many items in neurodiversity's bag of dirty tricks is to trivialize autism by alleging that various historical figures have autism or Asperger's syndrome. Therefore, they claim that these people can serve as role models and that anyone diagnosed on the spectrum has the potential to do just fine. Also, the argument against doing scientific research to find a cure for autism is supposedly bolstered by claiming we are depriving the world of the next Albert Einstein or Bill Gates.

Most people who have read my writings know that about six years ago or so I wrote a fairly lengthy article (originally a book chapter in a book I was working on at one time) in which I attempted to debunk the diagnoses of autism for Bill Gates, Albert Einstein and Thomas Jefferson, three of neurodiversity's favorite role models.

Nobel prize winning economist Vernon Smith is also lauded as an example of a spectrumite whose gifts allowed him to make great contributions to society. However, upon a less superficial examination, we find that Smith's basis for claiming he has Asperger's at age 78 came from a self-administered autism quotient test and no clinical diagnosis.

Award winning mathematician Richard Borcherds is also touted by the neurodiversity ideologues of having Asperger's syndrome. We find that on further examination, the truth that the ND movement wishes to suppress is that Borcherds sought a diagnosis from psychologist Simon Baron-Cohen who would not give him one. Cohen wrote in book The essential difference:

One might question whether Richard Borcherds really merits a diagnosis at all, given how well adapted he is. Certainly he is not currently severe enough in his symptoms to warrant a diagnosis in adulthood, as his symptoms are not interfering with his daily functioning. In the jargon of the diagnostic criteria, he is not "suffering any impairment in his daily life"........

In my previous post, I discussed the autism speaks funded Talk TV video that was produced by Wrongplanet creator Alex Plank and Jack "Cubby" Robison. They interviewed Wired magazine writer Steve Silberman who stated that he was planning to write a book which in part would extol the gifts of the autistic spectrum to society. Two examples that Silberman used in the interview was the creation of Bram Cohen's computer program, Bittorrent which is a computer program that makes it easier to download large files and Craig Newmark's creation of the well known website Craig's list. Both of these individuals are given as examples of successful persons with Asperger's syndrome.

In a private email to Mr. Silberman, I bemoaned the fact that my disability is often trivialized by stories such as these and I felt he should note this. In a nice reply to me he explained that he agreed autism could cause problems for those who have it and that I had a one-sided idea of the book he planned to write. When he felt I was implying in my last post that he had commercial motivations for granting his interview to Plank and Robison, he posted a comment on my blog claiming that was not the case and that the book had not even reached the proposal stage yet and that he was just beginning to do research on it.

Well perhaps since he seems to plan using Cohen and Newmark as examples of persons on the spectrum who have made great contributions to society I'll try to be helpful to Mr. Silberman in doing his homework.

According to an article in business week about Cohen's alleged Asperger's
. He was someone who was able to go to college, get married and have a child and set up a very successful software venture. The notion that he has Asperger's syndrome came about when he was out with his girlfriend Jenna and Jenna's young daughter at a restaurant and they were talking about empathy and Cohen's lack of it. Jenna, who had worked with autistic children, suggested that Cohen have Asperger's syndrome. The article goes on to state that Cohen never sought a professional diagnosis of Asperger's.

yet another article questions whether or not Cohen really does have Asperger's. Some of the commenters on this article take umbrage (as do I) that Cohen would trivialize ASD's by claiming that he has one without bothering to obtain a clinical diagnosis.

Craig Newmark has also written about Asperger's However he just states the symptoms are familiar to him and he gives no indication that he was actually diagnosed or any evidence that he indeed has this condition. One of the most telling sentences:

However, psychologist friends berate me when I indulge my (mostly suppressed) hypochondria in this area.

It would seem that once again neurodiversity gets it wrong on two more of their role models. I also can't help thinking that after Mr. Silberman does some more research, his book may be shorter than he actually anticipated.

Saturday, August 7, 2010

Alex Plank: The Sycophantic Saga continues

I have been following a rather interesting thread on that aptly named website that has banned your humble blogger from commenting, Wrongplanet. Though Alan Griswold was the exception to the rule of ND's who criticized Dr. Laurent Mottron for holding out his hat to collect money from the organization whose goal he claims is nonsensical and his statement that autism is a harmless condition and no ND's to the best of my knowledge have taken Michelle Dawson to task for accepting money from the organization she so clearly despises, there do seem to be some denizens of Plank's own website that have taken him to task for his consumption of cooked crow and accepting money from the organization he so clearly has opposed and maligned in the past. Ironically enough Plank once wrote a tongue-in-cheek April's fool joke essay about how he had taken over autism speaks-the likelihood that this represented wishful thinking on his part. As my former psychoanalyst would have said, the shoe appears to be on the other foot with wrongplanet not being above accepting donations from autism speaks and perhaps changing their tune in terms of their attitudes towards autism speaks, details to follow.

Of course Plank tries to rationalize his actions to the wrong planet denizens. However, he does not seem clever enough to come up with anything original but rather utilizes the excuses of his predecessors who partook of the forbidden fruit of the autism speaks trough. His statement that autism speaks does not influence the content means he is not a sellout, is reminiscent of what one of the more unsavory characters in the ND movement told me justified Michelle Dawson's accepting money from AS for research. This means that the DNC should accept money from republicans even if the republicans are not influencing policy.

He also makes the fallacious statement that autism speaks has a person on the autism speaks board of directors who is on the spectrum. Of course it is possible that Plank may be stretching the truth a bit in that he means that his partner's father, Robison, sr. is on a scientific advisory board of autism speaks which is not the same thing as the board of directors. Robison also certainly has no understanding of what 99.999% of autistic persons in the world go through as these experiences are clearly an abstraction to him.

Plank also steals Michael John Carley's thunder by claiming that autism speaks is changing and is starting to support autistic persons. He claims this person whose post he is responding to can call him on the phone to get the details privately yet does not want to release this info publicly on wrongplanet. Interesting that he is saying autism speaks does not influence the material in his videos, but I am wondering if the underwriting of his expenses in making the videos have influenced these statements of praise for this organization which he previously had nothing but bad things to say about, including implying that they were engaging in eugenics of autistic persons. Why would Plank insist on just confiding this to a friend in a phone call, why not tell the entire world in the thread of these details if they have any veracity?

Plank also seems to imply that his accepting funding for his videos means that anyone else with an ND perspective who is an ND proponent can now have a say in how the organization they detest so much will spend their money. Well, wrong planet members, I have this bridge in Brooklyn and......

Last but not least John Robison himself steps on the soapbox. I will paste the part of his statement that I find particularly offensive and dissect it:

When I joined the Autism Speaks board earlier this year I made the point that they should be working with other groups, and this affiliation with Alex is one such example. Many of you have been quick to criticize Autism Speaks for not having autistic people working for them . . . I held out Alex and Jack for video production, and you criticize them them for taking up the offer. Well, Jack and Alex are on the spectrum, and they are going to help Autism Speaks with video production. That's the kind of inclusion you asked for, and I think it deserves support, not ridicule.

First of all, John Robison, it is misleading for you to say you are on the board of autism speaks. You only serve on one of their scientific advisory committees and not on the board of directors itself. You are just trying to give credence to Plank's phony statement.

No, John, this is not the inclusion that I asked for. I suspect it is not the inclusion anyone else asked for either. I have criticized autism speaks' autism in the workplace dog and pony show on multiple occasions. Giving your son and his friend money to have a good time going around the country making videos of various people is not giving an unemployed autistic person who needs to make a living a job. The two are totally different. No, I do not believe that autism speaks should work with people whose goals are completely different from theirs and who in fact are working against the noble goal of trying to cure autism and prevent newborn children from becoming autistic (no not abortions) or who are at least using science to try to mitigate this horrible disability while cure and/or prevention are still not possible. Some may find this inflammatory, but autism speaks should no less be involved with neurodiversity than the local police department or FBI should be involved with the Mafia. There is no justification for including the evil ND's in their game plan.

I realize that autism speaks (including board member Jon Shestack) have made justifications for Mottron's funding claiming he was doing work that might help nonverbal autistics or help autistics achieve more educational potential or help with parenting and employment.

I am still trying to understand what possible justification there is for AS to be funding these videos and these kids in their early 20s who are barely affected by their autism if at all who come from affluent backgrounds and can find ways to pay for the videos themselves. In fact, if John Robison thinks these videos are so important and he has made money from his book (his second book coming out soon as well) and his various entrepreneurial endeavors then why he can't pick up the tab for these videos since his own son is one of the people involved? This way the money AS is spending on these videos could go for really important things like helping autistic people find jobs or finding friends or lovers or doing scientific research to help autistic people function better if not cure them or prevent autism in the first place.

I don't understand how these videos are helping autism speaks as Robison claims they are. In fact I don't understand how they are helping anyone except for Alex Plank, "Cubby" Robison and Steve Silberman plug his future book.

Well again I guess in spite of my now five and a half decades on this planet there are some things I will never understand.

I have also been told there may be some problems in commenting in autism gadfly by one of my readers. I am not sure what is causing this and I have checked it out and it seems to be okay. However, if anyone has trouble commenting or deserving comments on this thread don't get published I apologize in advance.

Wednesday, August 4, 2010

Autism speaks picks up part of tab for Alex Plank videos

As regular readers of autism's gadfly know, I have written about how neurodiversity idealogues Laurent Mottron and Michelle Dawson have been awarded half a million dollars in funding from autism speaks in spite of the fact they are opposed to the idea that autism is a disorder or disease and this is the basis of autism speaks fundraisers.

Below you can view one in a series of videos made by neurodiversitite Alex Plank and Jack "Cubby" Robison.

You notice this video deals with Wired Magazine writer Steve Silberman, author of the infamous "geek syndrome" article that appeared in that magazine nine years ago or so stating his ambition to write a book detailing the great achievements of those with asperger's throughout history and how many scientific discoveries were made by those on the spectrum.

You can check out the credits in the beginning and at the end of the video and you will notice the logo for Plank's website You also note the logo of another famous autism organization.

Checking with Cubby Robison's father, John Robison, I wondered if autism speaks had funded this video given their name appears in the credits. The answer would seem to be in part yes, they underwrote some of the travel expenses and possibly some other things for Plank's and Robison's video.

We have seen in the past that Plank has wrongly accused autism speaks of intimidating a blogger and getting a website to stop the sale of his t-shirts. Two years after the fact Plank still has this false story on his website and has never offered a retraction or apology.

Alex Plank has some choice words about autism speaks apparently

He states:

Actually, most autistics feel that these nonprofits are doing a disservice to those living with Autism by running campaigns that dehumanize people with the condition and painting an inaccurate picture of what Autism is like. For example, Autism Speaks, the largest Autism organization in terms of financial capital, has no autistic employees and no board members with the condition. They disallow autistic individuals from speaking at their conferences with the rationale that "it wouldn't be appropriate." While a lot of the research they fund may be conducted by good scientists who are unaware of the organization's political slant, Autism Speaks' end-game is establishing prenatal screening. Any good that comes from this research is consequently undermined by the negative messages they send.

In addition to being impressed by Alex's omniscience in knowing what most autistic people think, I am intrigued by the old neurodiversity fear mongering maligning autism speaks by claiming they are trying to establish prenatal screening to abort autistic fetuses when there is no evidence to suggest this whatsoever. I have to wonder why autism speaks would pick up the tab for a person who has treated them in this manner and makes the nasty inflammatory statements that Plank has made about their organization and even written libelous things about them in the past.

It is embarrassing to admit that Robison asked me if I would consider participating in an interview. For a brief moment I said I would consider it though they would have to come here to Los Angeles to interview me. I now realize it was a mistake on my part to consider it for even a moment.

There are autistic people who can't speak and who self-injure themselves and when most of us are unemployed and autism speaks talks about the importance of employing persons with autism in their autism in the workplace dog and pony show in spite of the fact there is not a single example of a person with autism as far as I know who has obtained a job due to any action of autism speaks. There is the fact that many of us can't find romantic relationships, can't get things done during the day, have phobias and have trouble functioning. Gadfly wonders about the priorities of autism speaks and why these videos would be financed in any way shape or form. What would parents such as the well known KGAccount who makes videos of her very low functioning son who will likely never function at a level of an Alex Plank or Jack Robison think if they were donating to AS and participating in walks for the organization if they found out their money was being spent on videos putting such a positive spin on Asperger's. I can only wonder what in the world autism speaks is thinking or why they would consider this money well spent.

I guess there are just some things in this world I will never understand.

Tuesday, August 3, 2010

Ivar Lovaas RIP

This story is bound to generate some additional media coverage in the next few days. It is probably still too new as a news item to have gotten much coverage yet. I was intrigued when I was checking the stats of this blog and some persons had entered "ivar lovaas obituary or "ivar lovaas died" as search words and were lead to this blog. I checked it out myself intermittenly and thought it was just an idol rumor, then finally came up with the previously linked to story.

Of course ABA will likely still live on as a treatment of choice for many years or even decades after Dr. Lovaas is buried and/or cremated. I wonder if any of the obituaries or news items will mention the controversies over the aversives that Lovaas used in the past and how dependent his 1987 study was on the use of aversives. I have been involved in autism-related matters long enough to remember the controversy over the shocks, spankings and food deprivation that most of the current generation of autism afficianados has forgotten that are linked to Dr. Lovaas.

Though I have had my differences with Michelle Dawson in the past, she was certainly spot on in her "The Misbehavior of Behaviorists" essay when she talked about how the science behind ABA was falsely advertised as doable without aversives in California and other jurisdictions where they have been outlawed.

As a person on the spectrum I realize I have to watch my social skills and remember it is in poor taste to speak ill about the deceased, so I guess I won't comment further. I still wonder if any of the multitude of obituary pieces that are bound to come out in a day or two will mention the past controversies.