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.