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.
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, Uncategorized, adults, campaigns, government, politics |
one comment
Gary McKinnon is an autistic adult and a UK citizen with an obsessive interest in UFOs. This led him to hack into US military computer networks looking for evidence of a cover up. As a result of his actions the US government is seeking his extradition. There is an account of the whole affair on Wikipedia
I believe that Gary McKinnon should be tried in the UK and serve his sentence here. It is up to the judge to decide whether or not his Asperger’s Syndrome is a mitigating factor when passing sentence.
I share concerns that if he is extradited to the USA and treated as a terror suspect his mental health will suffer. His autism ill befits him to cope and there are professional concernss that he may become suicidal if the extradition goes ahead. Therefore I am supporting the campaign outlined below and urge you all to do the same.
The campaign website carries more information.
The National Autistic Society is also supporting Gary McKinnon’s campaign against extradition.
For immediate release ………………………………….. Wednesday 6 January 2010
Online Campaigners Show Support for Gary McKinnon
Text GARY to 65000 to join petition
Two major online campaigns - a text petition and the “Chicago” song download - are being launched this week demonstrating continued, and widespread, public opposition to the extradition of Gary McKinnon.
Time is running out for Gary as he nears the end of legal challenges in the UK courts.
The text petition, spearheaded by Janis Sharp, Gary’s mum, and key supporters, urges voters to text “Gary” to 65000, by way of demonstrating their support. Evidence of petitioner numbers will be sent on a regular basis to the Home Secretary, as well as to the Conservative & Lib Dem Shadow Home Secretaries in this, an election year.
The ambition is two-fold, first to give voters an opportunity to directly manifest their frustration at a lack of protection for vulnerable UK citizens such as Gary, and second to encourage the main political parties to reform our imbalanced extradition arrangements as part of their manifesto pledges.
Meanwhile via a Facebook and Twitter campaign, Janis is asking Gary’s supporters to download the song “Chicago” recorded last year, with and for, Gary, by international musicians David Gilmour, Bob Geldof and Chrissie Hynde.
Janis said:
“The support and compassion shown by members of the public has been a tremendous boost during our 8 year fight to ensure Gary faces justice in the UK.
“I hope this text campaign helps stir the Government from its stupor of inactivity which is simply fuelling the public’s sense of outrage at the unnecessary cruelty of the situation.
“Gordon Brown wrung his hands over the execution of a mentally ill British drugs carrier in China. Yet he and his government remain complicit in the US authorities’ hounding of my vulnerable son, despite knowing that, for Gary, extradition amounts to nothing less than a death sentence, given his growing mental instability.
“Why can’t the UK just ask our supposedly strongest ally, President Obama, to show clemency towards Gary by cancelling the extradition request and allowing a UK prosecution?
“Sending a text takes seconds. Intervening takes moments. Gary has lived in anguish for years.
“As for the music campaign, I hope President Obama will listen to the reworded version of “Chicago” which is a direct plea to him. If he personally learns of Gary’s plight perhaps he may show compassion of his own accord, and allow my son to be tried in Britain.”
Last month, Gary’s legal team filed an application for judicial review of the Home Secretary’s most recent decision not to halt extradition despite overwhelmingly compelling evidence of Gary’s mental deterioration, and expert warnings of the onset of psychosis and probable suicide that his extradition would trigger. The courts are still considering this Judicial Review application.
ENDS
For further information, please contact:
Melanie Riley, Bell Yard Communications +44 (0) 20 7936 2021
melanie@bell-yard.com +44 (0) 7775 591244
The reference to “imbalanced extradition arrangements” refers to the most recent treaty (2003) between the UK and US governments. This treaty does not apply in Gary’s case. If it did he would already have been extradited with no option to challenge the decision in the UK courts. I added this comment in an earlier post on the subject.
The extradition treaty between the USA and the UK that has been ratified by both countries dates from 2003. Under its provisions either the UK or the USA can request extradition if an offense has been committed that is punishable in both countries by a minimum sentence of 1 year in prison. The lack of reciprocity resides in the fact that the UK is obliged to deport subjects who are suspected of an offense in the USA. Unlike the UK, Americans are not subjects of the crown butcitizens of their state and enjoy the protection of its constitution. One of the provisions of that constitution is that citizens can only be deported if prima facie evidence is presented before the US courts.
Prior to 2003 UK subjects also had this protection. The USA had to show their evidence to a UK court before a deportation order could be made. That is why Gary McKinnon is still in this country. His offense was committed before 2003 and so he has been able to challenge the deportation order through the UK courts.
As the treaty does not apply to Gary I am not convinced that tying his case to a campaign for a fairer treaty will help him. As I see it Gary’s problems do not arise from failings in the law but in the aversion of the UK authorities for any form of public disagreement with the USA over questions of security and anti-terrorism activities. This is mirrored by the increasing restrictions on civil liberties being enacted in UK law. I agree with Henry Porter that 2009 was a bad year for civil liberties and like him I hope that in this election year we will have the opportunity to Vote for liberty and rights in 2010.
January 7th, 2010
Posted by
Mike |
Law and Order, campaigns, politics |
11 comments
“Political autism” has emerged again in a row within the European Union (EU). Despite taking Britain into the EEC (the forerunner of the EU) in 1973, the Conservatives have always been vulnerable to disputes between their pro-European wing and the euro-sceptics who are mistrustful of European federalism and keen to defend British independence. The Labour Party has comparable factions within its ranks.
Thus political leaders of both the main parties have always had to perform a tricky manoeuvre, demonstrating their European credentials to a business community that knows where its markets lie and appealing to an electorate, many of whom prefer to blame faceless European bureaucrats for all our ills. This has led to an inconsistent approach that causes exasperation amongst some of our European partners.
This came to a head again this week over the lack of commitment by the Conservative Party leadership to the European Union. According to the Guardian
Pierre Lellouche, France’s Europe minister, described as “pathetic” the Tories’ EU plans announced today, warning they would not succeed “for a minute”.
Giving vent to frustration across the EU, which has so far only been expressed in private, Lellouche – who said he was reflecting Nicolas Sarkozy’s “sadness and regret” – accused William Hague, the shadow foreign secretary, of a “bizarre autism” in their discussions.
He said: “They have one line and they just repeat one line. It is a very bizarre sense of autism.”
This is not the first time autism has been used as a term of abuse in politics. But the National Autistic Society launched an immediate complaint
Autism (including Asperger syndrome) is a serious, lifelong and disabling condition. Comments such as those attributed to Pierre Lellouche, France’s Europe Minister, in which he seemingly suggests the Conservative Party, and in particular, William Hague, demonstrate a bizarre sense of autism are therefore extremely unhelpful.
To use the terms ‘autism’ and ‘autistic’ in a derogatory or flippant manner can cause deep distress and hurt to people affected by the condition. The National Autistic Society (NAS) is keen to address this issue, in order that these terms are not used lightly, particularly by commentators or people in positions of power or influence.
Autism is much more common than most people think and affects over half a million people in the UK. To use the terms as a criticism, for dramatic effect or to try and gain political advantage only perpetuates the confusion and misunderstanding which people with autism have to cope with everyday. This is simply unacceptable and must stop.
Today’s Times ran with the story of Monsieur Lellouche’s apology.
France’s Europe Minister has expressed his deep regret at causing offence by calling the Conservative Party “autistic”, but also blamed a mis-translation for the furore today.
Pierre Lellouche said that he was voicing his real concern about the Tories’ Eurosceptic slide under David Cameron when he reproached the party for “a very bizarre sense of autism” in an interview with The Guardian.
He also called their hostility to the European Union “pathetic” and said that the party’s policies in the European Parliament had “castrated” them. Aside from the political row, the remarks were condemned by autism advocacy groups.
However, although the minister said today his remarks were “clumsy”, he claimed that the term, which is colloquially used in French to refer to a stubborn person who does not listen, is a common term of political abuse in France.
Leaving politics aside, this derogatory use of autism reflects some very primitive and harmful ideas that still hold sway in France. Two years ago I wrote about an abusive “treatment” known as “packing” that is still going on today
“A French treatment for autistic children with psychiatric problems which involves wrapping the patient in cold, wet sheets from head to foot is undergoing a clinical trial for the first time, which critics hope will see an end to the controversial practice.
The treatment, known as “packing”, involves wrapping a child in wet, refrigerated sheets in order to produce a feeling of bodily limitation and holding, before psychiatrically trained staff talk to the child about their feelings. Critics have called the procedure cruel, unproven and potentially dangerous, but its proponents say they have seen results.”
This cruel treatment has been condemned by advocates for neurodiversity and proponents of biomedical cures alike. I have made my feelings regarding Lorene Amet’s position on vaccines and biomedical treatments perfectly clear hereand, more recently, here. But I agree with her that Packing is barbaric.
It is time that the French medical and educational systems came to grips with the reality of today’s autism. Placing autistic children in hospitals, under psychiatric surveillance, refusing their inclusion in proper educational systems, refusing their access to medical examination
and treatments, violating their human rights and dignity, and even worse still allowing interventions such as “packing” to be conducted in hospital settings is unhelpful and has to be stopped.
According to the Times French autism organizations have welcomed the NAS response and are equally condemnatory of the casual use of autism as a term of political abuse in France.
French autism groups said that the affair demonstrated how offensive was the current use of the term in French public discourse.
Patrick Sadoun, a member of the Sesame Autism Association, said: “The English are right to be shocked. I congratulate a country that reacts to this. I am horrified that French politicians, at the slightest occasion, call one another autistic.”
While autism is an acceptable term of abuse autistic people continue to be the victims of unacceptable physical and psychological abuse.
This post is also available on LBRB
November 5th, 2009
Posted by
Mike |
National Autistic Society, abuse, politics |
13 comments
Yes!
The House of Lords gave The Autism Bill its third reading today.
It now becomes The Autism Act 2009.
I have posted the full story on LBRB.
October 22nd, 2009
Posted by
Mike |
National Autistic Society, adults, politics |
8 comments
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.
September 20th, 2009
Posted by
Mike |
National Autistic Society, Quackery, adults, politics |
32 comments
This post first appeared on LBRB May 28, 2009
A few weeks ago I attended the Northern Regional Forum of the National Autistic Society. The general feeling was that all those working around the private member’s bill on Autism then before Parliament had done a fantastic job. The government was talking to us and, more importantly, listening to us. The Bill of course would never become law but we could expect signficant concessions from the government in exchange for the Bill being dropped.
Instead the government proposed to delete the existing clauses in th eBill and replace them with amendments of its own covering
- Transition Planning
- Diagnosis
- Identification and Assessment
- Provision of Services
- Training of Professionals
- Local Authority/PCT Leadership
These amendments were acceptable to the Bill’s supporters and it will now progress through Parliament with government support. It is thus more closely focused on adult proivision. Provisions relating to children, including diagnosis, data collection and planning services will be enacted via regulations and guidance issued by the government a part of its Children and Young People’s Plan.
There is still a lot of work to be done. The government consultation that I wrote about last month is continuing and it is even more important now for people to respond.
Meanwhile, another private member’s bill from John Bercow on special educational needs that only came 19th out of 20 in a poll of MPs has failed to become law but the government has given assurances that it is making progress on meeting the commitments outlined in the Bill. The NAs was again involved in drafting the Bill and lobbying for its support.
the National Autism Society, which had worked with Bercow on the Bill, said it was satisfied that the Bill had achieved some success.
NAS policy manager Beth Reid said: “This Bill has helped to raise the profile of many important issues facing SEN children. It has put increased focus on making sure the right measures are in place to ensure they are support properly.”
However, Reid said more work was needed to bring down the high number of SEN children [whch contains a disproportionate number of autistic children] excluded from school, something Bercow’s Bill had sought to address.
This is important work. These are not grandiose schemes for combating autism, defeating autism or ramping up research efforts into possible causes and cures. But they are honest attempts to improve the lives of autistic children and adults. The NAS and its allies will continue to monitor the government response to ensure that its deeds do in fact match up to the commitments it has made in response to our campaigning.
July 13th, 2009
Posted by
Mike |
LeftBrainRightBrain, National Autistic Society, adults, campaigns, politics |
no comments
Nothing About Us Without Us
This familiar slogan from the disability rights movement is being raised increasingly by autistic rights activists. Autistic people have a history of self-organization in groups like Autism Network International (ANI), Autistic Self Advocacy Network(ASAN), and more recently the London Autism Rights Movement. While the Internet has made it easier for individuals to connect both locally and on a wider scale autistic people also come together in the physical world. Autreat has seen a regular gathering of autistic people and their allies since it was launched by ANI in 1996 and, for those unable to make the trip to America, a group of autistic people based in the UK launched Autscape in 2005. Alongside these annual events there are numerous local groupings with activities ranging from social gatherings to serious campaigning.
When you combine physical presence with a wired community the results can be impressive. Two years ago the NYU Child Study Centre launched the now infamous “Ransom Notes” poster campaign. It promoted the idea that autism along with other neurological disorders was kidnapping our children. Bloggers responded with outrage. ASAN stepped in to coordinate the protests. 22 disability organizations from around the world joined the protest and NYU dropped the campaign.
Earlier this year Action for Children ran a TV advertising campaign that presented autism as a monster that trapped children. The blogosphere was again quick to respond. A parent launched a Face Book campaign which soon attracted a thousand followers, one of whom enlisted the support of Tony Attwood, and organized complaints to the Advertising Standards Council. Action for Children stood by their campaign, which nevertheless ended a week ahead of schedule.
Mention of Tony Attwood reminds me that he is at present on the receiving end of a campaign by ASAN who have launched an online petition to express their opposition to his continuing association with Families of Adults Affected by Asperger’s Syndrome (FAAAS) which has moderated its name (it used to be known as Families of Adults Afflicted with Asperger’s Syndrome) if not its stance that wives and children are the victims of men who use their Asperger Syndrome as an excuse for unreasonable behaviour towards their families.
In this case I am not so certain that public protest is the way forward. It is one thing to use the politics of protest to confront high profile images and messages that damage the public perception of the autistic community. It is quite another to demand that someone change their mind based on public opinion. That requires debate and discussion. I agree with ASAN that Tony Attwood ought to disassociate himself from FAAAS and their use of his name on their website. How we go about it is a question of tactics not principles
This brings me to my final point. How can autistic self advocates position themselves to influence decisions before they are taken instead of having to protest about the consequences of those decisions taken without them? And, bearing in mind the well documented difficulties that autistic people have navigating the nuanced world of social communication, what can we do to help them? Maybe it is they who can help us. Autistic plain speaking could cut through the doublespeak that bedevils the political process.
In the USA the Inter-Agency Autism Coordinating Committee (IACC) that advises federal agencies like the National Institutes for Health (NIH) on priorities for autism research invited members of ASAN onto the committee and took account of their representations. ASAN have also had meetings with the relevant advisors in President Obama’s policy teams.
Things are happening in the UK as well. Parliamentary support for the Autism Bill led to the government setting up an external reference group chaired by National Autistic Society (NAS) chief executive, Mark Lever. The vice chair was autistic adult, Anya Ustaszewski. The input of the autistic adults on the group has helped to shape the public consultation launched by the government that will lead to statutory guidance for local authorities on meeting the needs of adults on the spectrum.
The NAS has come a long way in transforming itself from a parent led group to one that takes autistic adults seriously. A number have been elected to the NAS Council and one serves as a member of the board of trustees. But there is still a lot to do. Even quite able autistic adults can be excluded because they cannot cope with big meetings or face to face negotiations in committees. For others, their difficulties with communication make it hard for them to get their message across. And those with additional learning difficulties are even more disadvantaged.
The good thing is that autistic people are demanding to be heard. Governments, along with other public bodies and autism charities have declared a willingness to listen. No doubt there will be future improvements to the wired world that will help the process. But people have to be willing to create those opportunities. We could start by taking seriously the slogan with which I began this article.
Nothing About Us Without Us.
May 10th, 2009
Posted by
Mike |
adults, autism advocacy, politics |
32 comments
There was a protest march in London on Saturday. I am not talking about the tens of thousands who were protesting over the economic recession in advance of Wednesday’s G20 Summit in London. There was another march that day protesting about autism. I did not attend, but from the photos posted online it looks like a few hundred parents, children and their supporters turned up to march from the Embankment to a rally in Trafalgar Square.
The march was called by Open Your Eyes to Autism, “a parent’s initiative” that has strong links with The Autism File. This is a magazine founded by Polly and Jonathon Tommey to promote biological interventions for autism, especially dietary ones. They were the first parents in the UK to try secretin on their child. I once shared a platform with Jonathon Tommey at a conference for health care professionals. Lisa Blakemore-Brown was also there and spoke about the use of Munchausen’s by Proxy to discredit parents who insisted on biomedical treatments for their autistic children. I felt at the time that both had valid insights, but these were insufficient to support the weight of their arguments.
Still, it made for an interesting conference in which medical professionals, attending as part of their continuing professional development, were exposed to the alternative views promoted by Tommey and Blakemore-Brown alongside more orthodox speakers. My contribution was an early attempt to promote the idea that health care professionals can make a positive contribution to the support of autistic people and their families if they start out by accepting the autistic person instead of trying to cure them. You can read it here.
So I was interested to see that despite its biomedical, anti-vaccine sympathies the march on Saturday also welcomed representatives of the London Autistic Rights Movement, including Hub blogger Casdok who attended with her adult son and a placard that read “Acceptance Not Cure.”
This may be because the march seemed to offer something for everybody. Its flyer called for
Improving services for autistic children and adults.
Recognition of the endemic nature of autism worldwide.
Better educational services.
Valid Research to establish cause.
More support for autistic adults.
More help with the transition from child to adult:
Support for Dietary interventions on the NHS.
Recognition of the role of environmental triggers in ASDs.
And much more…
In this the march resembled its larger counterpart on the day. Both were coalitions who could agree upon some issues and disagree about others. The key questions yet to be answered are, “Should we try to build a coalition in which the points of agreement outweigh the points of disagreement? If the divide is too great can we at least maintain a constructive dialogue while pursuing our distinct agendas?” I am open to suggestions on both questions.
March 30th, 2009
Posted by
Mike |
autism acceptance, autism advocacy, campaigns, politics |
9 comments
Mark Lever, Chief Executive of the National Autistic Society, has written an article for the Joe Public Blog at the Guardian, welcoming the publication of a private members bill on autism. In the UK members of parliament who are not members of the government are able to introduce private members bills. There is limited parliamentary time to discuss these bills so there is a ballot of MPs and the top 5 get to be debated. This year Cheryl Gillan MP came first in the ballot and she is sponsoring the Autism Bill that has the support of 13 autism charities.
This means that the Bill should at least get a hearing, providing 100 MPs vote for it on February 27th. UK readers can lobby their MPs via a standard campaign letter on the NAS website that includes the option to add your own personal message to your MP. While it is very unusual for private members’ bills to become law, if they generate enough support they may be adopted by the government or form the basis of future legislation. So if you agree with the aims of this bill please lobby your MP.
AIMS
The Bill has three sections.
- It places a legal requirement on local authorities put systems in place to record the number of people with autism in their area and ensure that they are included in local planning and commissioning strategies.
- In the transition from child to adult services many autistic people fall through the net because of a lack of coordination between different agencies. The Bill will require a high degree of inter-agency co-operation during planning for transition.
- Adults are frequently denied services because they do not meet specific criteria set up by local authority teams and are wrongfully deemed ineligible for services. Lack of training in autism means that many health and social care assessments fail to identify the specific needs of autistic adults. Services to meet these needs are virtually non-existent anyway. The Bill addresses all these structural barriers to adults accessing services.
A bill like this is necessary because of the success of the NAS I Exist Campaign in persuading the government to commit itself to developing an adult autism strategy this year. But we have been here before. We worked with the Education Department to create good practise guidelines for schools. We were commissioned by the Department of Health to produce guidance on services for adults with Aspergers Syndrome: Taking Responsibility.
But neither of these documents has the force of law. As late as 2006 the government was still issuing guidance that
clarifies the nature and intent of existing government policy as it relates to adults with an Autistic Spectrum Disorder (ASD). It is intended to encourage people in the social care and health field to develop local agendas for action.
We have had enough guidance and clarification. We want government to give leadership by mandating local government and health authorities to carry out its policies and provide the funding that will enable them to do so. Please support this bill.
January 22nd, 2009
Posted by
Mike |
National Autistic Society, government, politics, services |
2 comments
Today I received this email from the NAS. I commend it to you all and urge you to follow the link to email the Attorney General.
Dear Supporter,
Today we urgently need your help to call on the Attorney General to reconsider the decision to extradite Gary McKinnon in light of his recent diagnosis of Asperger syndrome. Gary has been accused of hacking into US defence computer systems and is likely to be incarcerated in a supermaximum security prison if extradited.
There is also a link in this email to our new awareness raising film – please watch it and let us know what you think. Read on for more details and please take action today.
Gary McKinnon was only diagnosed with Asperger syndrome in August 2008. This means that his diagnosis was not taken into account when the decision was taken to extradite him to the United States for trial. It is of great concern that any extradition proceedings may be damaging for a person with Asperger syndrome, as would the likely conditions in a supermaximum security prison. We urgently need all of our supporters to contact the Attorney General, Baroness Scotland, and call on her to reconsider the decision not to prosecute Gary in the UK.
Please take a minute of your time to email the Attorney General now.
January 14th, 2009
Posted by
Mike |
adults, aspergers, politics |
21 comments
