Friday, April 9, 2010

British charity founder takes off her shirt for billboards to draw eyes to autism topic

From The Guardian in the UK:


Polly Tommey was finding it difficult to attract attention to her campaign for increased awareness of autism, so she took her top off and posed, Wonderbra-style, for billboard posters beneath the words "Hello Boys" (pictured). The boys she has in mind are the three main party leaders, and the appearance of dozens of these images around London last week prompted a surprisingly swift response from representatives of each party.

Tommey was invited by an adviser to Gordon Brown to meet Phil Hope, care minister, to discuss her concerns, while David Cameron's office contacted her to promise that a detailed response was on its way. Nick Clegg wrote a letter pledging a week's respite for those caring for people with autism, and improvements in special educational needs training for teachers.

There has been a swift but mixed reaction from other autism charities, some uncomfortable with the style of Tommey's campaign and the agenda behind it, but she shrugs off the criticism.

The poster was, she says, simply a ruse to force people not to avert their eyes from the subject of autism, and its success is evident, she argues, in the instant reaction from the politicians she was targeting. To those people who have emailed the Autism Trust, the charity she founded, saying the image is degrading to women, she replies: "What is degrading is how people with autism are forced to live."

"It's sad that billboards have to go up in the first place to get autism the attention it deserves," she says. "I'm 43; I shouldn't be on billboards taking my top off, but if that's what's needed to get attention, then I'll do it."

Tommey is the mother of 14-year-old Billy, who has autism, the editor of the Autism File, a magazine directed at parents and carers, and the founder of a charity dedicated to developing autism centres across the country. This is where adults with autism could be housed and employed, and where the rest of the public could receive training about the condition. She is also a former body double for actor Charlotte Rampling, making her relatively relaxed about being photographed in her underwear.

The posters, funded by anonymous sponsors, went up last week to mark World Autism Awareness Day, and come a year after a similarly arresting set of billboards that featured a postcard to Gordon Brown with Tommey's home phone number scrawled across it, and promising: "I can save you £508m a year [through improved autism care]. Please call me when it's convenient." That campaign secured her an invitation to breakfast with the wife of the prime minister, Sarah Brown, and time with the government's health advisers.

Tommey's assertion that 6 million voters could be swayed by positive commitments on autism comes from a complicated calculation based on the number of people with autism across the country, and the number of family members, carers and teachers who she believes would vote for any party that pledged greater resources for the condition. Autism affects one in 100 adults, and there are an estimated 300,000 adults with a condition somewhere on the autistic spectrum. "I know of 14 people in my family alone that would vote for any leader who would seriously consider initiating a real action plan for Billy," she says.

Tommey has five points she wants party leaders to commit to, including: demands for improved training in autism for public sector workers, a commitment to building regional autism centres, and funding of further research into the condition.

Her campaign has proved divisive also because of her record of supporting Andrew Wakefield, the chief proponent of the theory of a link between the vaccination against mumps, measles and rubella (MMR) and a form of bowel disease and autism. His research triggered a huge dip in the numbers of children being vaccinated. The General Medical Council found him "dishonest" earlier this year, and the Lancet subsequently retracted the 1998 paper in which he had set out his findings.


Tommey is controversial in other ways, too. Her desire for residential centres for people with autism is not universally supported, with many other charities advocating that care should be brought into the wider community. Her magazine's focus on nutritional remedies has raised questions: her husband, a nutritionist, runs the Autism Clinic, a private practice offering treatment through dietary modifications. Some, such as the GP and author Michael Fitzpatrick, have voiced concern that her success at grabbing the attention of political leaders has detracted focus away from the efforts of the more mainstream National Autistic Society.

Tommey concedes that there is a lot of "bickering" among campaigners in this area, and says she had hoped to move away from the discussion of vaccinations, because she knows how divisive it is.

At the forefront of her current campaign is a desire to get politicians to focus on adult care for people with autism. Despite this government introducing an Autism Act to improve services for people with autism, and an adult autism strategy aimed at tackling the isolation experienced by adults with autism, she argues that not enough has been done.

"We are better at looking after children with autism. I'm not saying we are brilliant, but we are better. But we haven't a clue what to do with adults with autism. Starting with diagnosis, right through until death, we have to take this pressure off families," she says. She receives calls "24/7" from parents and carers who are worried about what the future holds. "A lot of parents are at breaking point."

Responding to Tommey's campaign, Benet Middleton, director of communications at the National Autistic Society, says: "While there can be differences of opinion, we firmly believe it is important that autism charities and campaigners keep working together in order to create the biggest noise and achieve change."