Sarah Brown, Polly Tommey and Autism
Today’s Observer profiles Sarah Brown, the wife of British Prime Minister, Gordon Brown. It focuses on her voluntary work which includes an interest in autism.
Nonetheless as her charitable interests expand, so do the risks, as the campaign she will front this autumn shows. Polly Tommey is the mother of an autistic child, who last year launched an eye-catching bid to publicise the plight of families by plastering her mobile number on London billboards and asking Gordon Brown to ring her. When she secured a meeting with the prime minister, health minister Phil Hope and Downing Street policy adviser Greg Beales, to her surprise Sarah Brown came too.
“Sarah said: ‘I really wanted to come to this, because I really want to get more involved with autism’. She genuinely wants to help, and that’s what I like about her,” Tommey recalls.
Mrs Brown, she says, commented on the number of small autism charities all fighting to be heard and suggested that they form a joint lobbying coalition. Her husband then asked Sarah to work with Tommey on setting up a campaign likely to concentrate on the needs of autistic adults, a decision reflecting what is increasingly a working partnership.
Either Sarah Brown was badly briefed or Polly Tommey is applying her formidable PR skills on her own account. While she was busy pushing herself into the limelight a number of autism charities had already got together and were making themselves heard. Here is the list of organizations working together with the National Autistic Society to support the Autism Bill in Parliament.
AIM
Autism Anglia
Autism Education Trust
Autism Initiatives UK
Autism Research Centre (ARC)
Autism Speaks
Autism West Midlands
The Children’s Society
Hampshire Autistic Society
Research Autism
Staffordshire Adults Autistic Society
Sussex Autistic Community Trust
TreeHouse
The Wessex Autistic Society
Wirral Autistic Society
Many of them were represented on the External Reference Group set up to report to government on its adult strategy for autism. Its chair is Mark Lever, CEO of the NAS. The Vice-chair is Anya Ustaszewski, member of the Autism Rights Movement and an adult with Asperger syndrome. The full list of members is appended to this report of its activities. Yet according to Polly Tommey, the prime minister no less, has asked his wife to work with Polly to bring the autism charities together to campaign for the needs of autistic adults. I wonder what Phil Hope made of all this. As Health Minister he has been involved in face to face talks with autism charities and their supporters in the All Party Parliamentary Group on Autism all year on the subject of adult needs. The government has adopted the private members bill on adults with autism and it is now a government bill.The I exist campaign has given a direct voice to the needs and aspirations of autistic adults. Where was Polly Tommey throughout all this? The Observer provides a clue.
However, there are risks in her new venture. Tommey’s belief in nutritional therapies and past comments on MMR vaccinations are controversial among some in the autism community: and Sarah Brown’s interest in autism has already led to sensitive ground.
The Observer is too kind. These are not Polly Tommey’s past views. They are bang up to date as even a cursory perusal of her magazine, Autism File, reveals. Polly Tommey is a fully paid up member of the club that believes vaccines cause autism and biomedical treaments can cure it. Her husband, Jonathon is a DAN practitioner who runs the Autism Clinic, offering a full range of quackery.
Effective protocols offering multiple treatments may involve:
Dietary Modifications
Nutritional Supplementation
Immunological Regulation/ Modulation
Anti-viral Medication
Homoeopathy
Hyperbaric Oxygen Therapy
Gastrointestinal Treatments
Liver Support & Enhanced Detoxification (methylation and transulfation)
Glandular Support (adrenals, thyroid and pancreas)
Heavy Metal Chelaton Therapy
Physical Therapies - exercise, massage, reflexology, kinesiology, lymphatic drainage, yoga, breathing and relaxation techniques, etc.
All this comes at a price: £300 for an initial consultation and £90 an hour thereafter. But if your household income is less than £45,000 a year help is at hand. The Autism Clinic has arranged a deal with a charitable foundation Caudwell Children to provide grants up to £3000 per annum for treatment. Caudwell is a bone fide organization that helps lots of children. Do they know they are funding quackery when parents apply for grants to pay for visits to the Autism Clinic?
Earlier this year my friend Mike Fitzpatrick published an open letter to Gordon Brown warning him against any involvement with the Tommeys. I also discussed this and looked at the way the Tommeys propose to help autistic adults
Centres of Excellence
The Centres of Excellence proposed by the Autism Trust seek to provide residential communities in rural locations that provide a “safe haven” for autistic adults. They hope that such centres will provide support for autistic adults in the community, setting up in business or becoming self employed. But most people live in urban settings so it hard to envisage how they will benefit. And despite Mr Jones’ protests it is clear that the Autism Trust is as committed as Ms Tommey is to nonsense cures and treatments. Each centre of excellence will feature a wellness centre offering all manner of quackery including homeopathy, chelation and hyperbaric oxygen therapy, as well as training centre and a conference centre promoting these “biomedical interventions.”
I think that Mr Jones’ complaints against Dr Fitzpatrick are disingenuous. If anything Dr Fitzpatrick should be taken to task for failing to mention the Autism Trust in his open letter. At a time when service providers are moving away from the model of self contained autism communities in favour of closer integration of services within everyday society the Autism Trust proposes to build a worldwide network of such communities.
They expect local authorities to fund places in their residential homes while they are free to develop profitable spin offs promoting quackery. Or, as they describe it in their financial model:
The capital development and business operating model will depend on the facility mix and local partners – as well as the engagement and support available from local and national government. A mix of charitable status and commercially self-standing models will be explored in each location.
I believe that Polly Tommey engineered her Downing Street meeting in order to promote this new business venture. She claims to be concerned for the needs of autistic adults but has ignored all the initiatives in which adults are themselves involved. She has not consulted with any of the self advocacy groups for autistic adults. She has avoided any participation in the joint initiatives from the other autism groups in the UK. The Autism Bill does not even rate a mention in her Autism File. This is the woman who complained to the Daily Telegraph last year about Autism Speaks:
“Autism Speaks likes to work on its own,” says Polly Tommey who runs the British magazine Autism File. “Many charities and autism organisations won’t have anything to do with Autism Speaks for this reason.”
This is all a bit rich when you consider how Polly Tommey has sidestepped all the campaigns in the autism community to pursue her own agenda. As I said in my earlier blog post, I think she is unlikely to succeed, even with Sarah Brown, temporarily at least, hitched to her wagon. But she could make things awkward for those of us promoting genuine initiatives with a real likelihood of success.
Next week she is speaking at a seminar in Leeds, HOW DO WE BEST ENABLE CHILDREN AND ADULTS WITH AUTISM TO LEAD FULL LIVES ? I have no doubt that her much publicized meeting at Number Ten helped to secure her invitation. I hope that the assembled speakers who all seem far more qualified than her to speak to this question are not derailed by another bout of self aggrandizement from the women who describes herself in her autobiographical sketch for the seminar as
one of the leading figures in autism in the UK as a campaigning and influential journalist and is featured regularly as a sector expert in the media.
She may be a leading figure to the dwindling band of people who believe that vaccines cause autism and pills and potions can cure it. But she is wrong. And all the business skills and acumen in the world are not going to change that.
Comment by Marge | September 20th, 2009
Caduwell is entirely bona fide, but they do have a history of funding rather fringe therapies (sorry, I don’t have references - just a recollection of looking at lists of things they funded a couple of years back). Whether this is an active decision, or whether it’s a hazard of the territory when you focus on funding things that the NHS won’t, I don’t know.
Comment by Mike | September 20th, 2009
Thanks for that Marge,
I see that last year Caudwell spent £1.2 million on treatments for autistic children. I believe that they also fund the Autism Treatment Trust clinic in Edinburgh that is run by DANite Lorene Amet. That is an awful lot of wheelchairs sacrificed to pay for quackery.
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[...] Nonetheless as her charitable interests expand, so do the risks, as the campaign she will front this autumn shows. Polly Tommey is the mother of an autistic child, who last year launched an eye-catching bid to publicise the plight of families by plastering her mobile number on London billboards and asking Gordon Brown to ring her. When she secured a meeting with the prime minister, health minister Phil Hope and Downing StRead more at http://actionforautism.co.uk/2009/09/20/sarah-brown-polly-tommey-and-autism/ [...]
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Comment by Socrates | September 20th, 2009
Someone that can whip a group of Mummies together and get a page in the Mail and has the money to plaster billboards with her message, isn’t going to be ignored by politicians.
She’s a professional media type who knows how to connect with people emotionally and it works. She’s very good at selling hope.
And as for the bright, shiny and apparently flawless NAS; well… that’s not quite the whole truth, is it Mike?
Just depends where you choose to shine the light.
Comment by Mike | September 20th, 2009
Harry,
the NAS is a work in progress. For all its faults it is moving in the right direction. It would help if you could specify where you think it is failing to live up to the aims it has set itself.
Comment by Socrates | September 20th, 2009
As much as I’d like to [and I would very much like to] engage in public muckraking, I will for the time being, be a faithful apparatchik and follow Procedures - I just hope the grand old lady that the NAS has become will engage me on a suitably adult and intellectual level - I’m giving it 28 days…
Tommey’s going to the lecture armed with a bucket of schmaltz and a vision of a bucolic paradise where shiny, happy Aspies engage in sublime and humane labour. Mark Lever’s got a pocket load of radical scruffs and a shiny tie.
The Nice Guy from the WRVS will loose this round.
Comment by Mike | September 20th, 2009
Harry
raising serious criticisms is not muckraking. And credit where it is due. Mark is as sharp as ninepence and quite capable of holding his own and resisting la belle dame sans merci.
Comment by Anna Hayward | September 20th, 2009
Not only are many of these therapies woo, and money would be better spent on therapies we know work, such as Sensory Integration Therapy and social skills training, some of the therapies mentioned are dangerous. Chelation therapy has lead to deaths - which is hardly surprising when you realise it is effectively washing the child’s blood with industrial solvents!
And does anyone ever think how the poor kids who have to endure this mumbojumbo feel? They’ll still be autistic. Nothing can change that, but as an Aspergers mother to autistic children, I know that doesn’t have to be some terrible fate, its just different.
Comment by Mike | September 20th, 2009
Anna,
good points and the best intervention of all is education. But teachers cannot charge £90 an hour per pupil. I wish.
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Comment by Ben | September 23rd, 2009
Caudwell Children funds many therapies for thousands of children across the UK. The Charity has no formal agreement with The Autism Clinic or any other provider, it funds the therapy requested by the applicant, which has to be supported by a professional medical reccommendation. To find out more visit our website.
Comment by Mike | September 23rd, 2009
Hi Ben,
thank you for your comments. I am sorry if I gave a false impression of your relationship to The Autism Clinic. I based my remarks on the contents of the Autism Clinic home page.
For families within the United Kingdom, earning less than £45,000 gross per annum may apply in writing to Caudwell Children for a biomedical grant. I am an authorised practitioner for the Caudwell Children and if successful may grant up to £3,000 per annum for services provided by The Autism Clinic including the purchasing of diagnostic tests and supplements. All applications must be supported by myself.
Tel 0845 300 1348
applications@caudwellchildren.com http://www.caudwellchildren.com
Tommey seems to be suggesting that he is providing the professional medical recommendation for applicants who wish to purchase his services.
Your charity’s bona fides are not in question. But this is more than can be said for businesses like The Autism Clinic selling untested remedies for which there is little or no scientific or medical justification. This clinic also has a very close association with Andrew Wakefield of MMR infamy. Regardless of the the good you do elsewhere, I would not like to think that my charitable donations were contributing to treatments based on Wakefield’s discredited theories.
Comment by Robert | September 25th, 2009
What a sad nit-picking article. Polly Tommey has done more to raise awareness of the problems facing autistic children as they grow up into adults than everyone else put together. By the way, her billboards were donated by a supporter.
On another matter, can you believe that the authorities are now sanctioning the testing of the new swine flu vaccine on 6-month old babies? They are asking for volunteers to provide the babies. Would anyone on this blog volunteer their child? This is far, far worse than anything Wakefield has been accused of.
Comment by Mike | September 25th, 2009
hi Robert,
so you discount the autism bill, the government’s statutoy guidance on services for adults, the I Exist campaign, the work of the external reference group, APPGA, the NAS and all the other organizations I mentioned? Polly Tommey’s billboard campaign and a chat at number ten outweighs all of that?
Flu vaccine? Yes, let’s not vaccinate at risk groups. Let us test swine flu on them instead. The mortality figures should be very instructive.
Comment by Robert | September 25th, 2009
Actually, yes I do.
None of the bodies that you mention - worthy though they may be - are much more than well-meaning talking shops. Let’s see some ACTION. Polly Tommey looks to me like someone who will make things happen.
The flu mortality figures will be interesting, as you say. How many die after being vaccinated and how many die who were not vaccinated.
Comment by Carrie | September 27th, 2009
I am the mother of a low functioning autistic child. I just came across your blog and am enjoying reading through your posts. I would like to thank you for using the phrase “autistic child.” My son is 13 years old and has been diagnosed since he was 2. For the past couple of years I’ve been receiving scoldings by so called experts for my use of that same phrase. Aparantly someone has decided that calling a child Autistic is Politically Incorrect. I was a bit shocked the first time some 20 something college grad who has no children informed me they were offended by my use of that phrase when describing my own child. How ridiculous.
Comment by Carrie | September 27th, 2009
PS I’m in the US. http://themedusafiles.blogspot.com/2009/07/why-oprah-and-jenny-mccarthy-dissapoint.html My rants.
Comment by Robert | September 28th, 2009
Well, I wrote that the flu mortality figures would be interesting. Will the jab kill more than the actual swine flu? I should also have mentioned the cervical cancer jab being given to teenage girls. Today we heard of the first sad fatality. How many more will die, how many be partially paralysed? Do you really trust the big pharmas and all their increasingly desperate PR?
Comment by Mike | September 28th, 2009
Robert
we do not know as yet if this poor girl’s death was linked to the HPV vaccine. I find the intemperate haste to exploit her death both insensitive and disrespectful.
Regarding the flu vaccine we know that around 12000 people die as a result of flu every year. Swine flu is adding to that total. The possible risks from vaccines are minuscule compared to the known risks from the virus.
Comment by Robert | September 29th, 2009
Disrespectful?!! For God’s sake a child has died shortly after being injected, her clasmates suffered bad side effects, thousands of other girls have been logged as having less severe side effects. I don’t believe this is the first girl in the world to die after having the cervical cancer jab. The suthorities will be desperate to try to show that there was some other underlying cause, of course. The financial implicatioons are massive. However, I’ll bet a pound to a penny that if she had not had the jab that she’d be alive today.
Comment by Mike | September 29th, 2009
Yes, Robert,
it is disrespectful to exploit this tragic death to promote your anti-vaccine agenda.
We should all heed the words of Dr Caron Grainger, Joint Director of Public Health for NHS Coventry and Coventry City Council
“No link can be made between the death and the vaccine until all the facts are known and a post mortem takes place.”
Comment by Mike | October 1st, 2009
Natalie Morton was not killed by an adverse reaction to the HPV vaccine. She had a malignant tumour in her chest that was so advanced it could have killed her at any time according to the pathologist.
Her family have responded with courage and dignity. No further comments on her death will be permitted on this blog.
Pingback by blog-thing : Blurring the boundaries | October 12th, 2009
[...] The first time I mentioned this Ben Sutcliffe from Caudwell Children wrote to me to correct any misinterpretation of Tommey’s statement. Caudwell Children funds many therapies for thousands of children across the UK. The Charity has no formal agreement with The Autism Clinic or any other provider, it funds the therapy requested by the applicant, which has to be supported by a professional medical reccommendation. To find out more visit our website. [...]
Comment by emma | October 29th, 2009
i would just like to add that i have an 11 year old son who has made incredible improvements thanks to the quackery that caudwell has supported. My son has moved from a handflapping, rocking, wheelspinning sickly child into a child who can now attend mainstream school with some support, and please dont insult my intelligence by telling me its coincedence, there are many documents and studies that correlate a link between autism and the immune system, and I have seen the results for myself. Many of the tests above are availabe only privately as the the NHS can’t afford them not because they think they are useless quackery, many a time I have gone in with the results from private gastointestinal tests to my nhs gastro paed who has always recognised their legitimacy and reacted/treated accordingly and thus going a long way to improving my sons quality of life, ie the fact that he now has one. You need to understand more about the biomedical presence of autism and not just what is presented to you on a web page or in a newspaper, before you can make a sound balanced judgement.
Comment by Mike | October 29th, 2009
Emma
thank you for your comment. I am glad your son is doing well. But evidence like yours is interesting but it is no more conclusive than stories from parents who have found no benefit from these therapies. What we need are studies to ascertain if these therapies work any better than placebo and, if so, a realistic explanation of why they work.
You are right that some studies have found a correlation between markers for immune activation and autism. But as one of the researchers said, we do not know if this is a causative relationship. Nor do we know if the immune activity is harmful or beneficial. It is too early to offer treatment protocols based on our present knowledge.
So far all the studies that have looked for GI disorders in children have found no difference from non-autistic children. It is not surprising that a sick autistic child will display more autistic behaviours than one who is not sick. Many of these behaviours are best thought of as coping strategies and the more a kid has to put up with the more he will need these strategies.
So addressing physical symptoms an autistic child will reduce these behaviours. The problem that many parents report, and one that deserves to be taken more seriously, is that too many doctors regard behaviours as normal in autism and do not investigate further for physical causes of distress.
As I wrote in my very first post on this subject
The first thing we have to be clear about is that the child’s symptoms are real. Some parents have had their worries dismissed because it is assumed that autistic children will have poor sleep patterns, scream a lot and be difficult to feed anyway. It is experiences like this that explains some parental support for Andrew Wakefield and his theory of the MMR link to autism. If memory serves, Nick Hornby author and a father of a son with autism, stated in a letter to the Guardian that he had no axe to grind regarding MMR but the doctors at the Royal Free were the first to take his son’s gut disorder seriously and offer him treatment.
The second point is that some of these symptoms may be connected to a child’s autism. But we do not know how. If you are non-verbal and you have constant earache, you will head-bang. That does not mean that your earache caused your autism. Nor does it mean that alleviating your distress will cure your autism. It means you are autistic and you have an earache.
Comment by Kiralea powell | November 25th, 2009
Well, well, well. If MMR or any other vaccination does not cause autism, what does? There is no found cause for autism, so what right does any Dr have, to say that vaccinations do NOT cause autism! Our son who is now 11, was given the MMR at 18 months, had a few fits with high temps & was hospitalised. Before he was given his MMR, he was a child who was talking in some small sentences, would answer the phone and say hello, and understood when we told him we were going for a drive, would run and get in the car etc. After his MMR, following his fits, he started making weird errr noises, holding his hands to his face when he did so, started spinning, lining things up, would not answer the phone anymore, didn’t respond when we called him, no more eye contact was given. He started screaming in distress when people came to visit, scream when we went out! MMMM wonder why such a happy healthy little boy could suddenly display autistic behaviours after his MMR. When children are given their vaccinations, they have the ingrediant called Thimeresol, which is Mercury. There is over 40% of this pumped into their little bodies over time with each vaccination they have. What is Thimeresol used for? To extend the shelf life of these vaccinations as a preservative! Our sons hair analysis and blood results came back with lead & mercury in them, also his pooh analysis was showing leaky gut symptoms…Think about this, if your child suffers leaky gut, i believe this is a predisposition for autism, because when vaccinated, this stuff can leak throught the walls of the gut into the brain, I have a friend who had mercury poisioning, which she was treated with Chelation for it. Her behaviour turned odd after being poisioned, she would go into a world of her own, start to giggle at nothing, suffered diarrhoea, like our son did after, quite honestly you could have thought my friend turned autistic herself! It is also believed that vaccinations have small amounts of lead in them also.We tested everything to make sure he had chewed on things that contain lead, even the dirt outside. So do vaccinations cause autism? Well in the UK they took Thimeresol out of vaccinations and the diagnosis of autism in children dropped… If you look at countries who do not believe in vaccinating their children, there are not a lot of children statistically diagnosed with autism…go figure! All i know, is our son changed after his MMR shot & we lost him into his own world of autism! Only us parents know what our child was once like before, so any DR who says vaccinations are not the reason for large numbers of autism, have no right to say so! After all they are the ones who tell us they dont know what causes autism. Oh and this crap about circumcision could be the cause of autism, is a load of balloney, my son has not been curcumised, and a lot of my friends kids with autism arnt either!!
Comment by Mike | November 27th, 2009
Kiralea
although we cannot say what causes autism that does not mean that anything could cause autism. Vaccines were suspected at one time. The possible link was investigated in a number of countries and no link was found. There is no reason to believe that autism is vaccine induced other than the fact that children who regress into autism usually do so in the second year of life after their MMR vaccination. There is a syndrome, Landau-Kleffner Syndrome, where children lose the ability to use or understand language between the ages of 5 and 7. Vaccines are not blamed for this because very few children receive a vaccine shortly before onset.
Regarding Thiomersal/Thimerosal, it has never been used in the MMR vaccine and it was not used to increase shelf life of other vaccines. It was used to stop contamination in multi-dose vials of vaccine that could prove lethal. I do not know what your figure of 40% means. Perhaps you are referring to the fact that thimerosal is 49% mercury by weight. In which case you are referring to 49% of 25 millionths of a gram of mercury in a single injection.
Where your test results from hospital labs or commercial firms like Doctors Data? Some of these commercial labs have a poor record and are under investigation.
I do nor know your source of information but some of the things you say are just wrong. You believe there is lead in vaccines. Where is your evidence?
In the UK they took thiomersal out of vaccines and rates of autism did not drop. Even when thiomersal was included in vaccines it was always far less than in the USA and reported rates of autism in the UK have always been higher than in the USA.
Which are the countries that do not believe in vaccinating their children. Name one. What is the rate of autism in that country?
Knowing that your son has changed does not mean that you know why he has changed. Doctors who say that, based on the evidence, vaccines are not the reason for large numbers of autism cases are right to say so.
You are right about circumcision. It is a crap argument. But the vaccine argument is no better.
Comment by michelle | November 30th, 2009
i am a mother trying to find an answer.my son did not d0 the things he was sapost to.he talks some since he has been in the early intervention program.they said they see symptoms of pdd or higher learning autism but what is this realy what can i do and why does he walk on his toes.they also told me that they couldnt say for sure where do i go from here.i have never heard of any of this…. someone please help i just want to help my sonmy e-mail is mathewsm79@yahoo.com
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