Last year I wrote a couple of posts ( here and here ) criticizing Polly Tommey for pulling expensive publicity stunts that resulted in her meeting with Prime Minister Gordon Brown and his wife at Downing Street. She presented herself as just a mother speaking for thousands of other mothers. Her remarkable success was contrasted with the apparent failure of autism organizations to work together for the benefit of autistic people.
At the time I pointed out that many other organizations had come together to support the Autism Bill, soon to become an Act of Parliament and to to advise the government via the External Reference Group. Chaired by the NAS chief executive, Mark Lever, with an autistic vice chair, it included organizations of autistic adults as well as parents. The only significant absence from the campaign were representatives of the biomedical cure organizations, including Polly Tommey’s Autism Trust, which seemed intent on disregarding the rest of us in pursuit of its own agenda.
The result of all our campaigning and lobbying of government officials and politicians saw the government adopt the Autism Bill, guaranteeing its passage into law, and shaped the adult strategy for autism that was published this week. Then Polly Tommey appeared on GMTV to discuss the strategy. We learned that it was her poster campaign that galvanized the government. They had consulted with her on the strategy and the next step was to be a new poster campaign which presumably would drive the next phase of the project.
In 2009 Polly Tommey was approached by Gordon Brown to represent The Autism Trust within the External Reference Group (ERG). This followed a meeting with the Prime Minister as a result of The Autism Trust’s “Dear Gordon Brown” charity billboard campaign. Polly was part of the ERG that helped formulate “The strategy for adults with autism in England (2010).”
Actually, after months of patient negotiation in which various organizations learned to work together and gained the respect of government officials and ministers, I can think of nothing more disruptive to the process than for someone to be parachuted in on the strength of an advertizing campaign and lay claim to all the credit. AoA also suggests that she organized the public consultation on the strategy.
Last year, following the campaign, Polly announced on national television that everybody could take part in formulating this plan; no one was left out of the strategy. It was announced via a direct email address to the Department of Health so that everyone who wanted could get involved.
AoA does not mention the 14 other organizations led by the NAS that campaigned for the Autism Act and organized over a thousand responses from their members to the consultation process. It does not mention any of the other members of the ERG. It does not explain why the ERG report does not list Polly Tommey as a member or that it published its report before she is supposed to have been invited to join it. Nor, if she already has the ear of the prime minister, are we told why another poster campaign is needed. Perhaps it will be aimed at persuading the rest of the autism community that we are all wrong and we should be following her lead instead.
One thing is certain. Although Tommey continues to support Andrew Wakefield and his failed hypothesis you will not hear about that in her campaign to take credit for the success of a movement in which she was at best peripheral and at times a hindrance.
External Reference Group Members
Chair Mark Lever, Chief Executive, The National Autistic Society
Vice Chair and Chair, Choice and Control Group Anya Ustaszewski, Member of the Autism Rights Movement and an adult with Asperger syndrome
Chair, Health Group Juli Crocombe, Consultant in Neurodevelopmental Psychiatry
Chair, Social Inclusion Group Eileen Hopkins, Director – International Development, Autism Speaks
Chair, Employment Group Carolyn Bailey, Chief Executive, Autism West Midlands
Chair, Training Group Clive Stobbs, Chief Executive, Autism Anglia
Wendy Atkinson Oldham County Council
Chris Austin Liverpool Asperger team
Amanda Batten Head of Policy and Campaigns The National Autistic Society
Richard Bremer Goldman Sachs
Maria Bremmers Autism London
John Dickenson Parent of an adult with ASD
Christina Earl Surrey County Council
Graham Enderby Carer of an adult with ASD
Ian Ensum Clinical Psychologist
Andrew Grainger Autism Initiatives
Ian Hall Royal College of Psychiatrists
Carolann Jackson Parent of an adult with ASD and chair of SAFE (Supporting Asperger
Families in Essex)
Sandra Knaggs Living Ambitions
Ann Le Couteur Professor of Child and Adolescent Psychiatry, University of Newcastle
Marie Lovell Skills for Care
Julie Lynes-Grainger Learning and Skills Council
Campbell Main Parent of an adult with ASD
Melissa McAuliffe East London NHS Foundation Trust
Andrew Merchant Priory
Richard Mills Research Director Research Autism
Chris Mitchell Adult with ASD
Thomas Moore Surrey County Council
Andrew Monaghan Hampshire Autistic Society
Liz Osman Secondee to Treehouse from Connexions
Fred Parsons NORSACA
David Perkins Prospects The National Autistic Society
Rebecca Rennison Policy Officer The National Autistic Society
Carole Rutherford Parent of an adult with ASD
Dinesh Sattee Adult with ASD
David Shamash Member of the London Autism Rights Movement and an adult with Asperger syndrome
Sarabjit Singh Adult with Asperger syndrome
Kobus Van Rensburg Northamptonshire Transition and Liaison Team
Adrian Whyatt Member of the London Autism Rights Movement and an adult with Asperger syndrome