A Touch of Alyricism

Dedicated to the equally fascinating topics of autistic advocacy and the 'sisterly sophistries' of radical gender feminism. Other topics may occasionally crop up. Contactable at alyric@gmail.com


Polemicist since Grade 8

Sunday, February 22, 2009

Katie Wright:: Autism Speak's Liability

“While large scale studies have not shown a link between vaccines and autism, there are lingering legitimate questions about the safety of vaccines that must be addressed. “

So said Autism Speaks in response to the Autism Omnibus Proceedings decisions by the Special Masters. Of note, they must have completely ignored the actual decisions to make that statement, as did every anti-vaxxer site masquerading as an autism organisation. In all cases the Special Masters spoke eloquently and in considerable detail about the lack of a credible link between vaccines and the development of autism in the individual child. There was nothing large scale about it, so why did AS put in this regrettable performance? Can they now be aligned with all the other anti-vaxxer sites? It would appear so given the anti-science displayed by Geraldine Dawson in her bid for a more collaborative approach to immunisation questions. Her approach to neuroinflammation and immune dysregulation noted in some ASD folk is at decisive odds to the findings of the experts in front of the Omnibus. She wants to give legitimacy to what amounts to parent pandering by giving undue importance to isolated findings. What is questionable at this stage is the legitimacy of parent pandering under the guise of collaboration. It could be well argued that it’s the parents who are entirely responsible for the current fiasco having decided against all professional advice that vaccines are responsible for their children’s autism. Throwing more money at vaccine safety questions is unlikely to persuade them especially in the oh so likely event that vaccines are exonerated from blame. If it’s not the answer they wanted they will ask for yet more research and where does it all stop?

Autism Speaks shift to the anti-vax agenda got a rather large push from the daughter of the founder who was rather vocal in her disapproval of Allison Tepper Singer. Katie Wright is a fervent anti-vaxxer who believes firmly that her son’s autism developed from vaccines. Autism Speaks founders, Bob and Suzanne Wright’s wish to support their daughter’s beliefs may be more than a little shortsighted if it means the derailing of the agenda of a significant research funder. Note that Allison Tepper Singer resigned over the vaccine research agenda. For her it was ‘we know the world is round’ and it’s time to move to more important questions. Katie Wright is still in the picture and the picture is less than rosy with her in it. It may well be that Katie becomes a liability that Autism Speaks can well do without. There are limits to the scientific veneer Geraldine Dawson can maintain with Katie’s contributions in the background.

When Jenny McCarthy wrote her latest, she included Katie Wright as one of her Mother Warriors. Thematic through the entire book was a lack of consistency in accounts. None were more inconsistent than Katie’s. Here’s her opening line:

“ We tried everything: traditional therapies, ABA, speech, OT, everything. We even tried the heavy pharmaceuticals and we were warned over and over again, not to do the diet, that it was very dangerous.”

Note the monumental absurdity that an exclusion diet is ‘very dangerous’ and no mention at all of the very real dangers of heavy duty pharmaceuticals. This is typical Katie Wright, overly florid emotional outpouring untempered by critical thinking skills. Embarassing it may well be but harmless compared to what she is capable of doing in the way of character assassination, most of it the figment of an overly active imagination. The best example to date is her latest for AoA. This is Katie’s reaction to Nancy Minshew and Paul Offit’s response to the Omnibus decisions. The article however is extremely short with Offit rating two small paragraphs and Minshew one.

Brevity notwithstanding, Katie makes the most of it. Offit and Minshew are introduced as “wealthy vaccine profiteer Dr. Paul Offit and Dr. Nancy ( all autism vaccine research is ‘crappola’) Minshew.” who “held a shockingly angry pity fest. “. Where the latter comes from is anybody’s guess. She carries on with “Even when Offit’s side wins, he is still angry, lashing out at grass roots autism organizations”. Here she names two - AS and NAA interspersed with other material she would like to attribute to Offit including that he’s fuming. Here’s how she puts it:

“It would be nice if autism orgs (AS, NAA) actually advocated for children with autism!” he fumes. “Instead they are anti-vaccine organizations (because demanding safety studies = heresy!)…and it is high time that these orgs stopped deluding people…”

Reading the original article it’s amazing the difference between the quite restrained tones of what Offit actually said and what Katie wished he said. No mention in the original of any organisation by name. Her quote is incomplete and there would have been plenty of room to quote the lot if her inaccurate additions had been omitted. This does not look especially like someone fuming:

"It would be nice if autism advocacy organizations actually advocated for children with autism," Dr. Offit said. "Instead, they are anti-vaccine organizations, and the fact of the matter is vaccines have nothing to do with autism and it's high time that these organizations stopped deluding people into thinking that vaccines do have something to do with autism and started focusing on the real causes of autism,"

Her next contribution is informative:

“Wow, is this guy angry, what a freak! Does it infuriate him that AS provides cash grants to communities in need? Or is Offit angry that AS has undertaken a huge campaign to provide insurance re-imbursement for autistic kids? How awful! Maybe Offit is also infuriated by NAA’ s modest research budget investigating how to help sick autistic children as well as their grants to struggling families is need. That is, obviously, really wrong!”

Offit goes to being an angry freak. But he has not mentioned either organisation or a single word about them. Why then the unsubstantiated vitriol, which continues for another paragraph?

Her next foray is against Nancy Minshew:

“Minshew re-iterates for the millionth time “I hope this begins an end to the death threats and character assassination against scientists!”

This she allies to
“Naturally Minshew expresses no sympathy or concern for the long suffering Cedillo family or their daughter Michelle, who is so severely physiologically affected.”

There is the rather large question of why Minshew would see the need in this article in this situation. Curiously, Katie asks “what character assassination?” one paragraph further. I think she has perfectly answered her own question. As for how much the autism community dislikes Nancy Minshew, Katie makes the common mistake of assuming her anti vaccination organisations, which use autism to further their anti-vaccination agenda are more than fringe dwellers of the autism community.

Katie concludes that Minshew and Offit are a couple of drama queens because no parent she knows would offer death threats. The FBI would certainly disagree with this piece of historical revisionism.

Katie then goes on to quote Minshew’s comments on death threats in full:

"I also hope this begins to end the death threats and character assassination against scientists and physicians who have tried to convey the science of this to the public."

What Katie objects to is the nature of the science being conveyed. As she puts it:

“Oh, The Science, meaning the science she likes. What about The Science behind the Hannah Polings decision? What about exploring The Science behind the 700% increase in autism over the past decade? What about The Science regarding the dozens toxic adjuvants in infant vaccines? How about researching The Science behind post vaccination regression? Or how about science not paid for by vaccine makers or the CDC?”

I suppose this is a fair summary of Katie’s scientific illiteracy. You don’t get to like some science and not others; it’s not a democracy. The science behind the Poling decision is what exactly? The decision was made on certain grounds but were they scientific ones at all? The science behind the increase in autism says there is no real increase in autism prevalence. There are no dozens of toxic adjuvants in any vaccine. Calling for research not done by CDC or vaccine makers is a typical appeal to conspiracy theories.

Katie naturally concludes that Minshew and Offit are working overtime to stop further research into vaccines and autism links. They both feel that too much money has been wasted already and there are other more profitable avenues for research but neither is working actively to prevent such research. That is in Katie’s head. Unfortunately there are many such notions and Katie has applied these with a broad and inaccurate brush to two quite respectable practitioners of respectively autism research and vaccine expertise. AoA censors all criticism directed at it so Katie could be forgiven for thinking that her style is acceptable. Outside of that protected environment it is not and reflects badly on any organisation with which she is associated. Bob and Suzanne Wright may regret placing their family loyalty above their duty to protect the reputation of their organisation. Currently Katie represents nothing more than a liabilty.

Tuesday, February 10, 2009

JB Handley's Latest Frivol.

JB Handley has thrown the gauntlet to Paul Offit and sued him and the publisher of Autism’s False Prophets for ‘false light invasion of privacy’, whatever that means. The piece makes for fascinating reading.[HERE] According to the authors the crux of the matter lies at point 3:

“3. To stoke the fires of this controversy, to sell more copies of his book, and to place supporters of his pro-vaccination views in a more favorable and sympathetic light, Offit fictionalized the exchange between Seidel, a supporter of Offit's views, and Plaintiff, one of Offit's sharpest critics. Offit accomplished this fabrication by creating a made-up "plea" by Seidel for Plaintiff to stop promoting a certain autism therapy. Offit then falsified a "response" to this phony "plea" by quoting, completely out of context, a message that Plaintiff had posted on a different message board in response to an entirely different topic.”

So in the middle of a work of non fiction there is this piece of fiction expressly designed to make JB look really bad. I wonder what the courts will make of it. Does he look so terrible? As is usual in any of AoA's productions there is the occasional gaffe, like this one:

“If you don't like what we have to say, stop listening.We will bring the full resources of myself and Generation Rescue to stop this. We will sue you for libel and we will go after your homes and assets. My lawyers live to investigate and sue people like you.This will be your only warning.”

Did they really want the courts to know how fond of litigation JB is? Wouldn’t appear to be all that helpful to this upstanding businessman wanting to look like an offended party.

It’s a very rambly piece and hard to know what they're trying to string together given that though Kathleen is a non party in a hamfisted way there is an attempt to tie in neurodiversity to harassment of Gen rescue’s angels. But acknowledging that the harassers remain unidentified and then stringing it to unknown neurodiversity proponents is a bit of a stretch, but not for this crew apparently.

Needless to say, Columbia University Press and Paul Offitt aren’t taking this at all seriously and maybe the court’s will treat this as a piece of frivol.

Monday, February 02, 2009

Action for Children's Diabolical Advertising Campaign

Dear Mr Day,

I am writing to protest the remarkably inappropriate advertising campaign you have running to apparently raise awareness of autism and how Action for Children charities can help. I have also seen the series of motherhood statements issued in response to similar protests, all more or less taking the combinatorial line that our intentions are pure and that these are Dan’s own words. The latter point may have had some validity if it were not for one expert who thought the whole thing smacked of brain washing and didn’t mind saying so. In fact some of the world’s leading experts have come out publicly criticising this advertisement. Here’s some of what they had to say:

From Dr Mitzi Waltz,

I had been hearing for several days about this advert. It has been incredibly distressing for many people with autism and their family member

I have now had a look and must say that I share their views. The voiceover distinctly says that his AUTISM was the problem, and implies that a special school is the solution to that problem.

You note above that families are struggling to cope, and I agree. As a parent, I have been in their shoes. The answer would not have been to remove my bullied, upset, hurt child to a residential school and then tell him that he needs to be a "better person."

The answer would be to provide support to struggling families and children in their own schools and communities, and to advocate for changing the system that seems to feel it is OK for young people with autism to be bullied and excluded.

This advertising campaign is disappointing and demeaning (by the way, the advert about the young carer also seems to fit the theme of accepting that children are dumped on, and that providing individual support without advocating for systems change is adequate.)

Dr. Mitzi Waltz
Lecturer in Autism Studies, University of Birmingham
(writing in my personal capacity)

From Professor Baron-Cohen
"Whilst I support any efforts to help children with autism and to alleviate suffering, I hope there will be more thought given to both the language and the imagery we use, to avoid risk of offence. For example, the name of the charity DAN contains the word "Defeat", as if autism is a disease like cancer against which we have to wage war. Autism is a complex mix of disability and strength, and whilst we need to work to find imaginative ways to reduce the disabling aspects, we do not wish to "defeat autism" since this would also eliminate the positive aspects. The latter include an excellent attention to detail, excellent memory for detail, and the ability to focus for long periods on a narrow topic. These features are not just seen in the high-functioning individuals or those with Asperger Syndrome but are seen right across the autistic spectrum. Sometimes these positive aspects can result in remarkable talents.

We need to work to get the balance right, between using treatments for those aspects of autism that need treatment (such as the language difficulties, the epilepsy, the self-injury, the gut issues, or the learning difficulties) and encouraging those aspects of autism that do not need treatment and are special, so that the person can fulfil their potential. An image of a child as a demon in an ad campaign is equally unhelpful if we are to educate the public about autism. These issues, about language and imagery, are important if we take seriously the notion of neurodiversity, and wish to show respect towards those who are neurotypical and neuroatypical."

Professor Baron-Cohen of the Autism Research Centre at Cambridge University

From Dr Tony Attwood

“I am very concerned that the advert gives a message that children with autism and Asperger’s syndrome are dangerous and potentially disturbed.

When the child refers to “correct errors in my behaviour” this seems to imply ‘brain washing’ and a sense of guilt for how he behaved.

Many of the behaviours I consider as coping mechanisms for the lack of understanding and respect from other people.

He refers to reacting when people insult him. Those that insulted him need the treatment.”

Dr Tony Attwood, author of “The Complete Guide To Asperger’s Syndrome”

Many other knowledgeable folk have protested this ill thought out campaign. It becomes apparent that Action for Children did not consult with anyone in the field before airing this sorry advertisement. For future endeavours, would you mind doing so?