Polly Tommey Woo-ing Gordon Brown
This post first appeared on LBRB Apr 15, 2009
Polly Tommey was due to see Prime Minister Gordon Brown today after a successful billboard campaign, costing a reported £500,000, that invited Gordon Brown to meet with her if he wanted to save £508 million pounds. Ms. Tommey’s son is autistic and she is concerned that there is a terrible fall off in provision and support when you transition from school to adult services. She wants the government to invest in autistic people and her message is that appropriate support will save the government money by lifting autistic people out of benefits and into paid employment. As she says in her press release:
“We want better support, we want politicians to engage with us and we want the acknowledgement and support that our children deserve as fully contributing members of society.”
This is all very admirable. But Dr Michael Fitzpatrick has written An Open Letter to Gordon Brown in which he questions how she expects to achieve her aim.
In her campaign posters, Mrs Tommey, whose 12-year-old son Billy is autistic, offers to save the UK government £500 million a year by helping people with autism to get jobs. But it is not clear from the posters how she thinks this can be achieved. However, The Autism File, the magazine she edits, focuses on two issues: supporting the campaign led by the former Royal Free Hospital researcher Andrew Wakefield against the MMR vaccine and promoting ‘unorthodox biomedical’ treatments for children with autism.
The main point that Dr Fitzpatrick makes is that if her message to the prime minister is the same as the one she promotes in The Autism File she would be well advised to think again. He ends thus:
If she wants better provision of diagnostic, supportive and educational services, she might consider adding her energies to the long-running campaigns of the National Autistic Society and others, currently focused on the Autism Bill.
Ms Tommey’s supporters have been quick to respond. At The Age of Autism, Teri Arranga accuses Dr Fitzpatrick of carrying out an inquisition against the Autism Trust and quotes Trust Chairman. Oliver Jones who responded to Dr Fitzpatrick as follows:
I am both shocked and astounded having read your open letter on the Internet this afternoon. How dare you act in such an ill informed manner about a campaign that I and many others have invested significant time and effort in - when you evidently have no idea about what we are actually focused upon.
I find it remarkable that a professional person can take such an aggressive stance as you have done about The Autism Trust’s campaign without having the decency or following proper protocol by making contact with any of the Trustees and specifically myself to determine the objectives and intent of our forthcoming meetings.
The tone of the article is plain. The Autism Trust is trying to improve services and quality of life for autistic people in the UK and Dr Fitzpatrick is misrepresenting their aims and undermining their efforts because he resents Ms Tommey’s support for biomedical interventions. Having read the Autism Trust’s lengthy press release I agree with Dr Fitzpatrick.
“A Personal Campaign”
The press release is clear that this is Ms Tommey’s “personal campaign.” She wishes to speak to Gordon Brown “on behalf of the thousands of mothers of children with autism in the UK.” It repeats that this is “Her campaign” and highlights her role as Editor-in-Chief of The Autism File.
Credibility
Ms Tommey obviously has a lot of business acumen and is an astute campaigner who is adept at using the media to position herself “as one of the leading figures in autism in the UK.” But, as Dr Fitzpatrick points out, her support for discredited notions about MMR and autism and her promotion of unproven treatments do call her credibility into question. This is underlined by errors in the press release. Ms Tommey claims that:
autism numbers have increased dramatically in the last twenty years from 1 in 10,000 in 1988 to 1 in 100 today.
As long ago as 1966 Lotter established a figure of 4 in 10000 for severely autistic children. When Wing and Gould examined the broader autistic spectrum in 1979 they found 20 in 10000. The present figure of 100 in 10000 includes people without significant cognitive impairments who were only added to the diagnostic criteria in 1994.
But Ms Tommey uses these false figures to argue that we face a fresh challenge as for the first time a significant number of adults enter the system. This is a direct contradiction of the NAS I Exist campaign which has successfully persuaded the government that generations of autistic adults have been ignored. The NAS is continuously engaged in discussions with government ministers and officials to get a commitment to action based on the provisions of the Autism Bill which enjoys unprecedented support amongst MPs.
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.
Danger
The greatest danger is not that Ms Tommey and the Autism Trust are going to persuade the government to follow their lead. But by muddying the waters with their campaign they may give the government an excuse to back pedal on existing commitments while they consult with this self appointed autism constituency. The best way forward is to get behind the NAS campaign and keep up the pressure for the provisions of the autism bill to become law.
Comment by Socrates | July 12th, 2009
It just shows the power of good pr.
It’s a lesson for us all.
Facts alone, are not enough.
Comment by Mike | July 12th, 2009
Apparently she was turned down by Cameron and Clegg, the leaders of the main opposition parties, because they were too busy to see her. This is the letter I sent to Gordon brown’s office.
Dear Mr Beales
I understand that you have been meeting with Polly Tommey of the Autism Trust following her recent poster campaign. I have read their press release and must state that as the parent of an autistic son aged 24 I disagree with her arguments and her aims.
Statistics
She argues for an autism epidemic in the last twenty years that means that for the first time autistic adults are entering the system in unprecedented numbers. The prevalence figure she cites of 1 in 10000 in1988 is unsupported by the literature. In 1966 Lotter found a prevalence of 4 in 10000 in the county of Middlesex using a very narrow definition of autism. Wing and Gould repeated his study in 1979 using a broader definition (the autistic spectrum) and found 20 in 10000. More recent studies by Chakrabarti and Fombonne in the West Midlands indicate that this figure has remained stable over time. These are figures for those most likely to need supported living arrangements throughout their lives. The current headline figure of 100 in 10000 includes those individuals (80 in 10000) who are more likely to lead independent lives and find employment, providing their needs are recognized and accommodations are made. There is no epidemic. These individuals have always been with us even if their needs have not always been acknowledged. They have been “Ignored or Ineligible” as one NAS report put it.
Provision
There is a shortage of provision for autistic adults of all abilities. But there are problems with the “centres of excellence” proposed by the Autism Trust
1. Their rural location ignores the fact that the majority of autistic adults live in towns and cities and may wish to stay in an urban environment.
2. Self contained autistic communities may be suitable for some autistic adults but in general housing provision is moving towards supported living arrangements within the mainstream community, not apart from it. So this is at best a niche solution, not one that can be rolled out across the sector.
3. The costs of this additional residential care will have to be met by local authorities who are struggling to meet present costs in the current economic climate. The Autism Trust business plan is vague about finance but seems to require a significant input of public money.
“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.” (http://www.autismtrust.com/About/the-solution.asp)
4. The centres of excellence offer very little for more able adults who make up the majority of those on the autistic spectrum and there is no evidence that adult self advocacy organizations have been consulted about the Autism Trust’s proposals.
Not So Hidden Agendas
Ms Tommey and he r supporters in the Autism Trust may argue that this project is separate from her beliefs about MMR and so-called biomedical therapies for autism. But the Autism Trust openly states that its centres of excellence will include a wellness centre that provides all manner of unproven treatments including homeopathy, chelation and hyperbaric oxygen therapy. Its training centres and conference centres will promote these treatments amongst parents and professionals along with and the anti-vaccine rhetoric that underpin them.
Conclusion
I believe that the Ms Tommey and her Autism Trust are seeking to introduce their unsupported theories and remedies for autism into the mainstream on the back of the genuine concern we all share about the existing state of adult provision in this country. That concern is best served by the current discussions between the government, the NAS and other organizations around the provisions of the Autism Bill. Ms Tommey’s campaign is a diversion from that process. I agree with Dr Fitzpatrick’s conclusion to his Open Letter to Gordon Brown.
“If she wants better provision of diagnostic, supportive and educational services, she might consider adding her energies to the long-running campaigns of the National Autistic Society and others, currently focused on the Autism Bill.”(http://www.spiked-online.com/index.php?/site/article/6541/)
Yours Sincerely
Mike Stanton
References:
Barnard, J. Harvey, V. Prior, A. and Potter, D. (2001) Ignored or Ineligible? The reality for adults with autism spectrum disorders. National Autistic Society
Chakrabarti, S. and Fombonne, E. (2001). Pervasive developmental disorders in preschool children. Journal of American Medical Association, 285(24), pp. 3093-3099.
Lotter, V. (1966). Epidemiology of autistic conditions in young children, I. Prevalence Social Psychiatry, 1, pp. 124-137
Wing, L. and Gould, J. (1979). Severe impairments of social interaction and associated abnormalities in children: epidemiology and classification. Journal of Autism & Developmental Disorders, 9, pp. 11-29.
Comment by Laurentius Rex | July 12th, 2009
WeEll I do not think we need to be overly concerned about Polly Tomneys approaches to Gordon Brown.
Firstly Gordon Brown does not control social care in the UK, nor I expect does he understand much about it, it is the duty of Civil Servants to brief him.
Secondly I do not think Polly Tomney despite her fund raising ability could actually create a sustainable model for the somewhat idealistic and Victorian kind of solution she proposes, for one thing the various social care commissioners would not buy it.
All this is really is an opportunity for the pair of them to up there profiles and get a bit of media kudos, it’s image not reality.
What Polly Tomney proposes has been pretty much abandoned by most of the charitable sector as it no longer has any credibility or appeal any longer, it is certainly going well against the grain of current social care policy and practice.
Comment by Laurentius Rex | July 12th, 2009
And to add to that, if she ever did get her way we would be seeing essentially autism farms, where our kind our abandoned to be the playthings and experimental fodder of quacks. Not unlike the Victorian lunatic asylums really.
Pingback by blog-thing : Sarah Brown, Polly Tommey and Autism | September 20th, 2009
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Comment by Robert | October 5th, 2009
Those of us who hope that our autistic (grand)children can be provided with the means to develop their unique gifts and talents as adults in a helpful environment hope that Ms Tommey’s concept of business centres in a safe rural setting come to fruition. No one else provides such a thing yet.
BTW, it’s sad to read so much class warfare on this site. Only in England…..
Comment by Mike | October 5th, 2009
Robert,
As others have pointed out, current trends in this sector are to move away from the segregated type of provision proposed by Polly Tommey towards community based solutions. A provider like Brookdale Care for example provides a variety of residential solutions for adults in rural and urban settings. Residents are then supported in accessing training in life skills, continuing education and employment either on site or at local centres, colleges etc.
I do object to the suggestion in your comment that it is those who retain hopes for their children who welcome Tommey’s autism farms. So, those of us who have objections to her solution have by implication given up on our hopes, have we?
Pingback by blog-thing : Polly Tommey and the Adult Autism Strategy. | March 5th, 2010
[...] year I wrote a couple of posts (here and here) criticizing Polly Tommey for pulling expensive publicity stunts that resulted in her [...]