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.


Anonymous said...

Whatever Plank is doing in reality, I sure hope a cure is found in my lifetime or else I'm going to end up being well-known as the man who comes across to others as "quiet", "boring",
"ignorant", a "nobody" and mentally slow in understanding and remembering things.

Basically I feel like the rest of my life is going to be spent living in my prison home. At this point, I'd be happy to remain single for the rest of my life or else I'll never have time to live each day like it's my last day to live. I've never had a normal girlfriend and I know I'd be awkward in the way I handle the relationship based on my lack of natural ability to make quick social decisions and getting things confused based on the way most people talk or do something from one situation to the next (i.e.- "You go get the special pass while I get us a spot" with an addition of a bunch of other verbal information while completing the tasks using your short-term working memory and executive functioning skills, only finding myself asking about something we already did because at the time I'm remembering it as something completely separate).

Just as the guy without limbs in "The Butterfly Circus" gets treated, I'm just as unimportant because I have MRELD with my autism.

Anonymous said...

The Butterfly Circus clips:

Anonymous said...

Meanwhile, as a result of my MRELD,
I have to go through these feelings the Mulan character from the movie, "Mulan" goes through with my speech therapist: