Memo to Bob and Suzanne Wright

22 Oct

Bob, Suzannewelcome to the UK.

I read your interview in the Telegraph. Fascinating. I’d like to highlight a few points.

“We want the best minds in the world to focus on this,” says Wright. “And we want the UK to be a big player in the global movement.”

“Until now it seems to have passed under your radar,” adds Suzanne – a statement that could anger all the British activists who have been working in the field for decades.

Um yes, just a bit. You see, in the UK, we already have some of the best minds ‘working on this’.

And ‘passed under our radar’? One could assume that Suzanne Wright has a monumental gift for saying stupid things after reading that. Maybe she hasn’t heard of the National Autistic Society a parent founded organisation formed over 40 years ago in 1962. Maybe she hasn’t heard of it because it doesn’t cry about ‘the children’ all the time and because it recognises the fact that autistic people have a voice (no autistic people are on AS board whereas autistic people are represented at many levels of NAS) and are – in the main – adults and it tailors its aim appropriately. Whilst NAS is far from perfect it has learnt the necessity to respect autistic people for the fact that they are autistic. Something the Wrights aren’t even close to. If the Wrights want to get any traction in the UK they need to shut their mouths and listen to NAS.

And then the anti-vax rhetoric starts, giving lie to the idea that AS are pro-vaccine.

….The last vaccine Christian had before he regressed was MMR – that’s why my daughter concentrates on that. I don’t know whether his autism is linked: it was certainly coincidental, what we don’t know is if it was causal. Nor do we know whether the thimerosal (the mercury-based preservative used in vaccines) is a factor, although mercury is clearly poisonous. Governments want to run from that issue but they should become more aggressively involved. They have to follow children through to see if there are any effects.

Well Bob actually we do know if his MMR shot was causal. It wasn’t. We also do know if thiomersal is a factor. It isn’t.

I personally haven’t seen a government ‘running from the issue’. I’ve seen government spokespeople repeat what science tells us. There is no link. No matter how much people think there is or believe there is, based on the available evidence, there isn’t. Science has followed through to see if there were any effects. There weren’t. How much clearer does it need to be Bob?

Virginia Bovill perfectly sums up my own concerns about you and your wife’s organisation:

The other major source of concern is Wright’s focus on prevention and cure. This upsets Virginia Bovill, founder of TreeHouse, the charity hosting the lecture, who is currently studying for a DPhil on whether the quest to prevent and cure autism is morally justified. “Where would prevention lead – to ante-natal testing and abortion?” she asks. “The thought of a world without all the people I have met with autism is not a world I would want to live in. I would rather people said: ‘They are here, autism is here – how can we help these children fulfil their potential; how can we support their parents?'”

This is a very British pragmatism. The issue is right here and needs to be addressed. Do you want to help or do you want to force through your own beliefs simply because they are your beliefs? If the latter please just hop back on the plane. We don’t want you here.

15 Responses to “Memo to Bob and Suzanne Wright”

  1. Ms. Clark October 22, 2008 at 08:57 #

    I don’t suppose it will help, but I apologize for the existence of Bob and Suzanne Wright, and their presence in your country. Their representing the US and autism, both, is a humiliation.

    There’s a video that was put together especially for Bob Wright and was to be shown at that conference. There’s no telling if he actually watched it. I’ve seen it. The video is exquisite and features the voices of autistic adults speaking for themselves. I haven’t checked yet with Dinah Murray, but I expect it will be available online soon.

  2. Socrates October 22, 2008 at 10:07 #

    My gut reaction to hearing Bob’s in the UK, was fear [seriously, the statement isn’t a rhetorical flourish]. It feels like being in the cross-hairs of Palin’s Moose rifle. It will be interesting to see what the UK’s leading researchers have to say about his visit.

  3. dkmnow October 22, 2008 at 10:34 #

    One wonders how it is that the work of millions has “passed under the radar” of the Wrights and their gilded ilk. Could it be because their “radar” is custom calibrated to exclude detection of everything except enormous floating masses of money? Could it be that they’ve spent their lives locked in a mirrored ballroom — the corporate media echo-chamber — such that the only activities they can see, the only voices they can hear, are their own? Could it be the roaring in their ears — the primal/tribal terror of being seen as having brought a “defective” child into the world, and thus, of being driven out of the village — such that they can’t hear anything over the din of their own fear, and the bellicose bravado by which they frantically conceal that fear?

    Oh, I could go on…

  4. Kev October 22, 2008 at 10:37 #

    Ms Clark, when I see that Wakers is still in Texas I feel we have the better half of the deal.

    Socrates, I imagine it must feel very disconcerting. It does to me and I’m just a parent.

  5. Another Voice October 22, 2008 at 17:08 #

    I do hope that their Executive Vice President for communications, Alison Tepper Singer, can make the trip over as well. Perhaps a London version of their delightful little film is in the offing.

  6. Patrick October 22, 2008 at 17:14 #

    Makes me wonder where they ever heard about MMR to begin with too. Surely, there wasn’t a big ‘MMR’ scare over here in USA, instead we got the fallout in the form of thimerosal/mercury/must be some toxin groups. Whoever informed them with their MMR ‘knowledge’ didn’t fill their ill gotten clue bucket very well with the background substance behind that urban myth either.

  7. Sullivan October 22, 2008 at 18:17 #

    I personally haven’t seen a government ‘running from the issue’.

    This propagates the myth. Governments ran to look at these problems. They ran to convene a conference to discuss the data which showed a possible link (Simpsonwood). They ran to commission further studies of both thimerosal and MMR. Just because the answer came back (repeatedly) as “No”, this doesn’t mean nothing happened.

    Quite the contrary. Tens of millions of dollars and many years of research have gone into these questions.

  8. Ms. Clark October 22, 2008 at 20:41 #

    Patrick wrote:

    Makes me wonder where they ever heard about MMR to begin with too.

    The Wright’s daughter, Katie and her husband, who works for a dairy products company (Eagle Brand) were feeding the boy nothing but cows milk for some months on end, he had some kind of digestive problem. (No kidding! Feed a toddler only one kind of food more months on end and he’s going to have digestive problems.)

    So daddy went online and found discussions of vaccines as a cause of autism, which is good because I’m sure the grandma with the huge head and married to the wealthy grandpa was saying, “This autism thang didn’t come from OUR side of the family!”

    Because of that the Internet and antivax-autism discussions they ended up seeing Arthur Krigsman, Wakefield’s associate and having the boy scoped by Krigsman (who seemed to perjure himself in an omnibus autism hearing). Krigsman put the small boy on some powerful drugs to calm down his guts and put him on the GFCF diet, apparently. Grandma and Granpa were there, too. If I’m not mistaken they all flew out to Texas to have the boy scoped. (Why was he scoped?) And now it comes full circle, I guess we can blame the UK for Bob and Suzanne Wright, after all. :-]

  9. alyric October 23, 2008 at 00:19 #

    Interesting to see how they deal with autistic adults, since they’ve successfully avoided any such encounter in the past.

  10. Kate E October 24, 2008 at 20:18 #

    http://www.timesonline.co.uk/tol/comment/columnists/guest_contributors/article4995146.ece

    The Wrights have also been interviewed in The Times – see link above.
    You mention the NAS – there is an associated organisation, too, Research Autism. Its
    “sole focus is to improve the quality of life of those on the autism spectrum – and their families – through promoting and funding research into interventional treatments and therapies.” Infinitely preferable to Autism Speaks!

    http://www.researchautism.net/pages/welcome/home.ikml

  11. alyric October 25, 2008 at 17:03 #

    Tanner;s Dad -as strong an anti-vaxxer as you can find anywhere. Stop wasting time and scarce resources on questions already answered over and over and over again. There is no link between vaccines and autism, not MMR not thimerosal, no nothing. The additions to vaccines, like aluminium are miniscule compared to what’s in the human infant already. The vaccine schedule is miniscule in terms of what the human infant deals with in confronting foreign antigens all day every day. Hannah Poling is a one off. Encephalopathies triggered by mitochondrial disorders are not like autism.

    You and your ilk have done untold damage in unnecessarily diverting scarce funds to dead ends. Now, along with your heroine, Jenny McCarthy, you want to become public health enemy number one in bringing back deadly diseases and the first to suffer and die will be babies too young to be vaccinated.

    And you want a united front do you? Well not with you and your money grubbing mob in it.

  12. Sullivan October 25, 2008 at 17:58 #

    Alyric,

    Tanner’s Dad is posting the exact same post on multiple sites. Take notice that the post is very much a non sequitur to Kev’s post. Kev is commenting about how Mr. Bob Wright is promoting the vaccine/autism connection, and, yet, Tanner’s Dad’s response is complaining that Autism Speaks (Mr. Wright’s organization) isn’t supporting the notion.

    I will note that one of the blogs that seems to be free of Tanner’s Dad’s post is the Age of Autism. Perhaps he could post this to their pieces on, say, the Black Tie event at Dana Point, hosted by Ms. McCarthy.

    But, that doesn’t fit the “tighten the belt” subtheme.

  13. HCN October 25, 2008 at 18:53 #

    Tanner’s Dad said “Why throw good money away on research that has not proved anything?
    What happens to my son in a few years when I die and he is left with no abilities to fend for himself?”

    Which is exactly why the vaccine/autism myth should be dropped, and effort should be concentrated on education and support.

  14. Sullivan October 25, 2008 at 18:53 #

    I requested that there never be another black tie event anywhere til every parent with a child with autism is solvent.

    I would respectfully disagree. If hosting a black-tie event pulls in a greater amount of money than is spent, it is a good investment.

    If black-ties are the bait to catch the big-spending fish, I have no problem with it.

    If, however, a black-tie event is held and the people involved are not given full disclosure that, say, the organization involved is promoting a dangerous agenda of un-vaccinating or vastly under-vaccinating our population, then, I would not support the event.

    If someone walking into a black-tie event mis-represents her organization as only promoting “diets and supplements”, then I do not support the event.

    Why don’t people answer your questions? Perhaps some of it is because you are attempting to hijack this specific discussion. If your post were a true response to the piece Kev wrote, you would have an argument.

  15. Sheogorath December 1, 2014 at 22:08 #

    The last vaccine Christian had before he regressed was MMR – that’s why my daughter concentrates on that. I don’t know whether his autism is linked: it was certainly coincidental, what we don’t know is if it was causal. Nor do we know whether the thimerosal (the mercury-based preservative used in vaccines) is a factor, although mercury is clearly poisonous.
    Problem is, Katie Wright blames the very form of mercury that hasn’t been in childhood vaccines since the year her eldest son was born, and even fell out with her parents until Autism $peaks began investigating the link. In fact, her website, Age of Autism, was set up during her argument with Bob and Suzanne, IIRC. Another fact inconvenient to this clearly dysfunctional family is that the MMR has never had Thimerosal in it because the measles component doesn’t work unless it’s alive, and the mercury would have killed it. We Autistics have long memories!

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