Action For Autism

Polly Tommey and the Adult Autism Strategy.

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.

Then I turned to Age of Autism (AoA)which provided more details.

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.

All these organizations supported the passage of the Autism Bill through Parliament. No mention of Polly Tommey’s Autism Trust.

This is the membership of the External Reference Group on Autism that published the Initial Report by the External Reference Group for the Adult Autism Strategy for England. No mention of Polly Tommey

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

Members:

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

March 5th, 2010 Posted by Mike | National Autistic Society, Polly Tommey, Uncategorized, adults, campaigns, government, politics | 2 comments