Autism Is Political: Bob Wright and a UK Perspective

By Lisa Blakemore Brown

The panel from the "Are we ambitious enough about autism?" event at the TreeHouse School.  From left, Bob Wright, panel moderator and TreeHouse patron Jon Show, Anya Ustaszewski and Virginia Bovell

Bob Wright, ex Head of NBC and co-founder of  Autism Speaks  Autism Speaks, speaks out in UK about vaccines and autism in answer to comments made by Lisa Blakemore-Brown, UK Psychologist Specialist in Autism and related disorders.

"I agree with everything you said" responded Mr Wright in a debate at TreeHouse's   Inaugural Lecture (HERE) at City Hall London during the evening of October 22nd 2008 after I raised various issues and said that the reason autism was taking a back seat in terms of it's understanding and funding, was entirely political and it was political because it was largely to do with the vaccine issue.

I had listened to Bob's excellent talk which referred to vaccines as a possible cause of the epidemic of autism; how mothers cannot make their children become autistic, no matter how much people try to blame them; about the approach his charity applied in order to seek out answers as to why so many children are being diagnosed with autism – 1 in 150 and 1 in 87 boys in the UK. If you can find out the cause then maybe you could find out the "cure" – or at least improve matters. Mr Wright had good reason to want to find answers as the grandfather of a child with regressive autism, on public record as having become ill and suffering seizures and bowel problems following vaccines. Through his efforts Mr Wright had raised $110 million in just three years.

He used the analogy of cancer, a number of people missing the point. Mr Wright referred to his own experience with cancer and how he would not have survived had it not been for the advancements in the field and asked how it could be, given the undoubted epidemic of autism, that there had not been such support and concern for autism. "One of the fastest growing and most prevalent childhood disorders in the UK (is) the least funded". (Autism speaks. It's time for the world to listen, The Times, October 23 200 

Powerful Vested Interests – The Vaccine Controversy

In the debate at City Hall, Jon Snow, Channel 4 News presenter and Patron of Treehouse, gave me the opportunity to raise issues as one of a half dozen or so others in the audience. I absolutely agreed with Bob's use of the analogy of cancer, referring to the fact that I too am a survivor of an aggressive form of breast cancer, and that my aunt had died of the same thing at the same age I got it some three decades earlier. Undoubtedly if it had not been for the advances in cancer diagnosis and treatment I would not have been there speaking to the Panel in the debate at City Hall. I then said that I felt the reason autism had not been treated to the same level of concern and support was entirely political – and that the reason for that was largely because of the vaccine controversy.

There were powerful vested interests shifting this agenda out of the way by any means they can. Those who felt there was a case to be made for some children experiencing adverse reactions to vaccines should have the freedom to say so without being jumped on.

I referred to the fact that I was the Consultant Psychologist who helped set up the very first school for boys with Asperger Syndrome 15 years ago, Southlands in Lymington, and that I had also been deeply concerned and involved with mothers falsely accused of causing their children's autism (and indeed cot deaths and other problems such as ME, following adverse reactions to vaccine) with the system applying the terms MSBP and FII. I have also written a book "Reweaving the Autistic Tapestry" (2001) which the National Autistic Society does not even acknowledge given the politics of all this.

I spoke of my concerns about why families had to fight desperately for years even to get a diagnosis; my concerns about how difficult it was to obtain the appropriate early intensive educational support, speech therapy etc; concerns about families struggling hour in hour out with autistic children who truly are also ill and in pain and many who say this began after vaccines, yet they are turned away for treatment that might help, them and their efforts vilified or mocked; concerns about the needs of adults who struggle to be understood in the "normal" world, and in the workplace, and want to be able to speak for themselves – many of whom were at the debate.

Jon Snow asked the Panel for a reply "on the vaccine issue". Mr Wright said to me "I agree with everything you said". I thanked him, and truly meant it as I know we are all caught between rocks and hard places when we try to help in the world of autism and those with money and clout can be manipulated and some of their views drowned out just as easily as those of us with no clout and no money – it's just the methods that differ. Mr Wright went on to speak at length about the efforts his organisation had gone to in order to get the truth out of the CDC. He spoke about how "one size fits all" vaccination programmes are simply not appropriate.

This led to a comment from Dr Michael Fitzpatrick who is invariably present at events to do with autism, and invariably speaks out against anyone who dares speak out against vaccines. He has a child with autism and is a GP. He claimed that the focus on the vaccine issues was why there had been no forward movement in the world of autism in the last ten years and, oddly, that there had been 300 cases of measles in London recently. I presume from this he was putting all vaccine related concerns under the MMR umbrella which is just part of the scandalous story, but a useful public reference for Dr Fitzpatrick given the interminable vilification of Dr Andrew Wakefield and his colleagues from the Royal Free, being played out at the GMC in London. But at least here there is agreement – it's the vaccine issues that have stopped funding going to seriously look at what has caused and what can be done about childhood autism.

Between A Rock And A Hard Place

Mr Wright has stood accused of not speaking out enough about the potential vaccine issues in public – and here in this debate he was getting it in the neck for talking about cure and also talking about vaccines. He couldn't win. He was caught between a rock and a hard place and I know all about that.

It is scandalous that instead of us professionals – there to serve the public - being able, in the time honoured way, to see a condition and seek to define it, understand it, find out it's cause, talking openly with each other through lectures and papers published in uncompromised journals; if necessary provide support and treatment for it, the most extraordinary battle has ensued with various factions hacking at each other wherever they can and especially over the internet, as the epidemic of autism has grown and grown. Of course you can't have a genetic epidemic so the answer has to lie in some sort of trigger hitting all corners of the population in the environment, with the damage maximised in those who may be genetically susceptible and where there may be other environmental toxins damaging growing brains and immune systems.

Of course even the genetic argument is not simple. Take Thimerosal, another issue discussed by Mr Wright over the years. It is a preservative which is 49.6% Mercury, a neurotoxin and a genotoxin. It can not only interfere with the brain, it can interfere with the DNA! It is in the flu vaccine and was first put into childhood vaccines (DTP) in 1928 by Eli Lilly, so if any of our parents or grandparents were particularly susceptible - maybe because they could not excrete the mercury from their bodies, which in itself could be a genetic variation - their DNA could have been damaged by the Thimerosal. This, in turn, could have been passed on to at least one of their offspring. From then on, even if their children were not vaccinated, the "genetic" damage could be passed on and arguments made that the condition was purely genetic. During the 1980's the vaccine programme was stepped up and not only were children given more mercury containing vaccines – therefore more mercury – but they were given them at younger ages – therefore they would be more vulnerable. The soaring charted increase began then, as did the use of the term MSBP/FII to blame mothers for causing or fabricating what many know to be adverse reactions to vaccinations. It cannot be a coincidence that Professor Sir Roy Meadow, who invented the term, sat on the JCVI (Joint Committee for Vaccination and Immunisation) specifically the sub committee concerned with adverse reactions during that decade and that the United States CDC was also represented in this Committee.
SEE JOINT SUB-COMMITTEE ON ADVERSE REACTIONS TO VACCINATION AND IMMUNISATION.(HERE)   

Minutes of the meeting held on Tuesday 8 March 1998

Incidentally, Professor Meadow was Knighted some months later.

Despite the foundation of potential for damage, the dangers of mercury and specifically Thimerosal, well researched in their own right through proper scientific studies (not just easily compromised epidemiology) and concerns about other vaccines and the interactions by highly respected medics over decades, commercial interests, increasingly interwoven with political interests, as those in power have allowed boundaries to be trampled over, have ensured it does not bubble up into the public consciousness and that these curious alternative agendas drown out those concerns, smacking down parents and professionals alike who dare raise the vaccine issue.

Vaccine Damage

Incredibly articulate people are using personas to whip up a fervour against those who talk about vaccines, those who talk of cure, those who even dare to say treatment or support is needed, or that people with autism "suffer". High powered international lunches bring together people who now claim to be interested in Autism – they can prove this to us all by debating the vaccine issue along with all the other issues as Mr Wright did.

Earlier this year David Kirby, journalist and Author of Evidence of Harm who speaks out about the vaccine issue, in particular the scandal of Simpsonwood, also came over from the US in 2008 and spoke at an event in the House of Lords hosted by Lord Hodgson. The event was advertised within Parliament but none of those who sat at the UN lunch or who met with Mr Wright attended. In fact the UK Press blacklisted the event. A BBC World News arranged interview was cancelled at the last minute, the producer saying he had "made a mistake". Only the Telegraph referred to the event in advance and no newspaper or broadcaster gave an interview to David Kirby or covered the event. At least The Spectator was represented at the House of Lords. Most of those who attended the Kirby event did not even know about the Treehouse event or the other meetings which Mr Wright had arranged in order to help those with Autism in the UK. This kind of alienation of groups who may touch on the vaccine issue cannot continue.

Of course whilst all the infighting goes on centre stage, it's a very useful distraction from the real issues. Bob Wright, his wife Suzanne and their daughter Katie, mother of their autistic grandson Christian, along with many other people here and abroad, concerned about the epidemic of autism and the very real suffering of children, have been trying expose what is going on and seek methods to help, for years.

It was already clear that there would be trouble at the Treehouse debate. See  Should we want to cure autism, Daily Telegraph, October 22, 2008 

Sinister Aspects Of Neurodiversity

A newly emerging in-fight is, on the face of it, irrational. Many adults with autism are deeply resentful of efforts to "cure" autism and are seeking recognition as people who do not want to be cured, do not need to be cured and do not suffer: they are not in pain. This was stated by Anya Ustaszewski who was a speaker on the Panel after Mr Wright spoke and we were shown a wonderful film by Dr Dinah Murray and Jes Binstock to spell out the message that in the ND world (Neurodiversity) being autistic is not so bad after all. Anya made it clear that it's the NT's (Neurotypicals – those without autism) who are weird. See   (HERE)

It is resented that there is an inference that there is something "wrong" with them, and say that if their autism is removed, then so are they. It defines them and they are proud of it. They don't want us to speak for them and they won't want me to either. They also resent the "Rainman" stereotypes and want a broader more balanced, respectful picture.

In and of itself, this is admirable. People with autism speaking for themselves and their own rights. I fully support them and said so at the Treehouse debate, for what its worth.

However, something sinister seems to have blown onto their admirable path and they have become deeply critical not only of those who say that autism is a medical problem, that it can be cured, that we should seek out ways to cure: they are now attacking parents and grandparents who know that their autistic children are suffering, those who know that their autistic children changed after vaccine; those who know their autistic children spend most of the day in pain suffering with profound bowel problems. In a discussion with one mother about all this she told me this week that:

"my son gets iller and iller with no research and doctors prescribing stronger painkillers and bowel remedies. My son has lost a lot of weight and is pretty ill. He is only able to eat limited food and suffers excruciating pain throughout the day. He has diazepam to dull the pain effects to make his life tolerable."

Virginia Bovell, Founder of TreeHouse, on the Panel, made the point that when she seeks treatment for the painful bowel condition suffered by her autistic son, she is not seeking to take away his autism, she wants to stop his pain.

Knowing many adults with autism as I do, I cannot imagine that they would want to score a home goal against the younger people in their community, to prevent them from getting very early educational support rather than possibly psychiatric drugs and possibly wrongful incarceration years later; and stopping them getting treatment if they are ill. Their message can be strong without denying the problems facing others in the same community of autism, even if they don't have to face any problems for which they need support. All that we all say deserves to be heard.

The TreeHouse debate was entitled "Ambitious about Autism". Virginia Bovell sought to bring alternative views into one place for a debate. I hope that being ambitious about Autism means that, at long last, everyone will have a voice to express their own experiences, including those related to vaccine, with each person valued in their own right and not just the politically powerful with commercial vested interests whose views have held sway for far too long. When this finally happens, everyone should benefit and our world will be a better place for it.

Lisa Blakemore-Brown is a psychologist.

Comments

[Cherry Sperlin Misra]

Big thanks to Robin Nemeth for speaking out and telling us things we did not know. I would agree with her that these people are terrorists. Because of them and others ,children of the third world continue to receive high mercury vaccines and there is no light at the end of the tunnel so far.
Would it be so difficult to say "let us suspend all mercury vaccines all over the world until we know better what is happening?"Clearly they have become part of the delaying tactics of pharma-public health.What sad times we live in.

[Tina]

Well said Lisa, absolutely brilliant!

Far too many children are suffering whilst Governments and Big Pharma profit.

[Robin Hood and JohnLittle Rack the Suckers]

As the United State and Great Britain watch their economies collapse from the fraud and criminality of their banking systems- we must learn to remember, that there's something actually even worse.

The Drs., who breached their fiduciary duties and public trust, and poisoned the most innocent of us all.

[jennifer]

great work Lisa. Be heartened. Things are moving and they seem to be moving fast. Just saw the Nancy Snyderman piece on the Today Show and it really appears that those people (the "vaccinate at all costs,there's no problems with any aspect of the vaccination agenda" fanatics) are frantic and running scared, as they should be.
Poor babies, they've been threatened- I bet a lot of the whistle blowers like Wakefield, Dr. Ratner, and some journalists have been threatened too!!

[Robin Nemeth]

I’m confused. Bob Wright founded the organization Autism Speaks. I would’ve presumed that that meant that he might have some influence over the direction it takes, over the things it does, over the way money is spent, over the façade that it chooses to present to the public.

I stood in a room some months ago, at an Autism Society of Greater Cleveland meeting, and I spoke with the vice president there. I had just read their latest newsletter. In it they were promoting an Autism Speaks fund raising event.

“Yes, Robin, I heard about what happened to you. And I believe your story”, said Mr. Gallucci. The organizers of an Autism Speaks benefit concert had tried to have me arrested simply for standing on a public sidewalk and politely asking people if they would like some very factual information about vaccine safety. “And no, I don’t think it’s right, what happened to you, it’s not acceptable what they did.” These are the things he said to me.

“Why, then—if it’s not acceptable, what they did to me”, I asked him, “is it acceptable for you to promote them, to help them to raise money?” And his reply was “I can’t shun a whole group of people simply because YOU happen to have some issues with them.”

Issues? ISSUES, Mr. Gallucci???

Our medical establishment has poisoned a generation of children. They CONTINUE to poison a generation of children. I am told to leave or else face arrest if I attempt to hand out information about it.

Parents are told to comply with the vaccination schedule, if they want to avoid breaking the law. Or, in the case of Prince George’s Maryland, if they want to avoid going to jail.

You’ve got that damn straight, I have ISSUES, Mr. Gallucci.

Mr. Wright, this seems simple to me.

If there are people within the organization who aren’t speaking for the organization, who aren’t working toward the organization’s goals, what are they doing there? Why are they still working within the organization?

A couple of years ago Alison Singer was quoted on the front page of the Wall Street Journal as saying “the only thing that parents of autistic children do wrong is, they have bad genes.” Don’t try to tell me and anyone else who’s been looking into this matter for years that she was unaware that this was untrue. If she WAS unaware, then she SHOULDN’T have been! She should have been let go. She shouldn’t have said it, and after having said it she certainly did nothing whatsoever, that ever reached the public eye, to correct the impression that she left with the public. There was a one sentence blurb of an apology that showed up for a few days on the Autism Speaks web site. How many people saw that, compared with the number of Americans who read her statement on the front page of the WSJ? I don’t know the answer to that but you are not a stupid man, Mr. Wright. I think you can make some kind of educated guess and be within the ballpark and understand that, if you really want to raise public awareness about the issue of vaccines, this is NOT the way to go about it.

Don’t talk to me about what you’ve done to try to get the truth out of the CDC. It’s been obvious to a great many people for decades that the CDC has known the truth about this, and was going to do everything within their power to keep the lid on it. I spoke with Bernard Rimland fifteen years ago, and he spoke to me about how it seemed to him that the people getting the government money didn’t want the cause to be known.

Autism Speaks should have been working to get the truth out where the public can see it. Then the matter of the CDC, it seems to me, would have taken care of itself. Instead, I’ve seen the people who are in charge of the public face of AS working diligently to keep the issue of vaccines out of the public eye.

Speaking of the CDC, I sent an email to them two weeks ago.

http://wideopenwest.com/~r_nemeth/cdc.htm

They haven’t responded, as of yet, to my email.

The CDC is not going to admit the truth, I think you and I know that by now. Any attempt to hold anyone accountable at the CDC is met with obfuscation or outright lies. Lies by untouchable people who profit from the administration of vaccines, or by nameless faceless people who profit from the administration of vaccines. Make any attempt to discover the names of the people who get on the phone with the CDC to tell the public a bunch of nonsense about the safety of vaccines and flu shots, and one is told “We don’t give out our names. Why? Well there are crazy people out there.” How nice, for them. To be able to be so nameless, and so faceless, and so blameless. All while still earning their paycheck. And all while our children continue to disappear.

You have real people working for your organization, Mr. Wright. Like the people who put together the Autism Speaks website. Where the only news that has to do with vaccines that ever gets any publicity is the kind of hogwash that Mike King just published in the Atlanta Journal Constitution. Fire them. People like Alison ‘the only thing that parents do wrong is have bad genes’ Singer. Fire her. People like Ms. Shari Goldberg, who publicly lied when she denied that an attempt was made to have me arrested a year and a half ago when I was on a public sidewalk in front of an AS benefit concert politely asking people if they’d like a flyer with some factual information about vaccine safety. Fire her. Have somebody write me back. I wrote to the parent organization, when this happened to me. Have them write me back and say “yes, Robin, we looked at the information that you sent us. The flyer, the copy of the police incident report. And it’s not right, what happened to you.”

And then, hold the people responsible ACCOUNTABLE.

From where I sit, Mr. Wright, Autism Speaks looks like a terrorist organization. If you’ve no control over what they’re doing, if I were you I wouldn’t want to continue to see my name in the press and the blogs, over and over again, shown as the ‘founder of Autism Speaks’. Either get them under control, or distance yourself from them just as thoroughly as you possibly can.

[Twyla]

Thank you -- wonderful article -- a sign of progress that this meeting took place. Maybe the walls are starting to crumble -- amazing that it is taking so long. As more and more kids are affected, it's just impossible for the denial to keep working, even by such powerful forces. It's so great to hear Bob Wright's comments.

Who would have thought (25 or more years ago) that vaccines would become a civil rights issue involving totalitarian control, propaganda, and and suppression of the news media. And I'm saying this as someone who was never a conspiracy theorist. It's truly tragic.

[Teresa]

Thanks Lisa for such a well written yet chilling account on the autism epidemic in the UK. Progress is slow and you are so correct about the political-vaccine issues, there and here.

Which brings me to this article from the Daily Mail-
http://www.dailymail.co.uk/femail/article-1081698/I-wouldnt-change-autistic-boy-world-An-admission-son-ex-wife-author-Nick-Hornby.html

I see that the writer, Virginia Bovell, was at your meeting and very influential in starting TreeHouse School. Her Son Danny and my Megan are the same age, 15, and also sound similar in their very affected autism diagnosis, yet Megan is receiving biomedical help to treat the myriad medical issues (GI, diet, bacteria, heavy metals, viruses etc.) This article made me so upset. Here ia a mother who does not have a child who is "neurodiverse"(high-functioning) but is nonverbal and in definite physical pain. How can she sit at the meeting one day with you as medical needs and treatments are discussed, and then turn around and write this crazy stuff--for example:

"To cure my amazing son Danny would be to suggest that there is something dreadfully wrong with him, perhaps even something we, as parents, couldn't live with - but nothing could be further from the truth. There are bad days, when Danny feels sensitive to everything around him. He can't bear loud noises or being touched, and persuading him to leave the house can be impossible. Instead, he'll sit, with his hands pressed to his face, rocking backwards and forwards, and I can only imagine the pain he is feeling.
He does scream occasionally, if he is very upset, and sometimes he will become aggressive and I have the odd scratch and missing hairs. But these incidents are becoming less frequent. Often, he will take my hands and press them to his head, as if to tell me where he is hurting.
Even aged 15, he has only a few words, such as 'momma', 'diddle' for daddy, 'home' and 'd', which is what he calls needing the toilet, and as a mother it is terribly traumatic."

How is this rationale for not trying to cure him of these horrible medical problems? This to me is sadistic. It is beyond my understanding that she would like to keep him just like that.

Is there more to this story? Am I missing something? Danny and those like him deserve all of our compassion, real research on his medical issues and yes,... a cure.

[Keith]

I wonder how many families had to walk in order to pay for Bob;s airfare, hotel accommodations (think he stayed at a Comfort Inn?) and meals?

[John Stone]

Thanks Lisa

What happens in the UK is, of course, local but it also part of an international strategy. In particular, people in the US need to be mindful of the political victimisation of people like youself and Andrew Wakefield in our country.

When Tony Blair first came to office in 1997 he talked about "joined up government" - people might have thought he meant an efficiency drive, but basically it meant tearing down the last remnants of any legal constraints on the executive, and on the political class running the country. Only very belatedly has it come to notice as a civil rights issue - meanwhile the isolation of anyone standing up against authority works far more completely perhaps even than in the US. I believe that your history, and Andy Wakefield's have demonstrated that virtually no trick is too dirty when bringing the critics of the state machine to heal.

Anyhow, you always played by the written rules, not the secret ones, and this article is testament to your courage and tenacity.

[Cathy]

I don't know whether to be uplifted that these types of conversations are happening or downhearted that these types of conversations need to happen...it's a freakin' nightmare (no news to us).
Three years ago I tried to get support from a big city children's hospital for my son's bowel and possible metabolic issues - once they found out he had autism, I was strongly discouraged from becoming a patient as they didn't treat autism. I understand this same hospital is now moving toward helping this community (growing pop + chronic medical issues = $$$). Thank God they said that as it lead me to my DAN! practitioner and we are further along on our journey without drugs...if we are having a hard time getting medical care b/c of the vaccine/pharma issue...I think that is the thought that puts me over the edge. Once this is documented as possible vaccine damage - where else will they be able to hide? Is that what is happening??