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, Polly Tommey, Uncategorized, adults, campaigns, government, politics |
2 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
This is the slogan of the latest campaign from the National Autistic Society. It launched today at a reception in Parliament where over100 MPs heard NAS Council member Thomas Madar talk about his experience as an autistic adult and saw the latest campaign video.
The campaign addresses the lack of support adults with autism face when looking for a job or trying to access benefits. New NAS research has revealed that, of the adults with autism we surveyed:
· One third are currently without a job or access to benefits
· Over half have spent time with neither a job nor access to benefits, some for over ten years
· Just 15% have a full-time job
· 79% of those on Incapacity Benefit want to work
· 82% who have applied for benefits say that they needed support to apply.
As with previous campaigns these statistics will be brought to life with the personal stories of adults and parents directly affected by these issues. For news, resources and to take part in the campaign visit the campaign website
October 13th, 2009
Posted by
Mike |
National Autistic Society, adults, autism advocacy, campaigns |
15 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, Polly Tommey, Quackery, adults, politics |
32 comments
Even though the controversy about MMR and autism originated in the UK our National Autistic Society has always tried to steer clear of the controversy on the grounds that we are not a medical charity. This used to be our position. You can still find it in a forgotten corner of the NAS website.
National Autistic Society position statement
The National Autistic Society (NAS) is keenly aware of the understandable concerns of parents surrounding suggested links between autism and the MMR vaccine. The NAS urges continued efforts on the part of the Chief Medical Officer, supported by further authoritative research, to put these matters beyond doubt and allay any remaining public concern.
While there is still no conclusive evidence, it is crucial that health professionals listen to parents’ concerns and respect their views as the experts on their individual children. Some parents experience a lack of sympathy and understanding in the healthcare system on medical issues related to their child’s autism. This urgently needs to be addressed to ensure equal access to services.
But now the NAS has come off the fence. Our new statement begins:
The National Autistic Society (NAS) is keenly aware of the understandable concerns of parents surrounding suggested links between autism and the MMR vaccine. We recognise that the weight of epidemiological evidence indicates that there is no statistically significant link between the MMR vaccine and autism.
The statement could be stronger. To my knowledge there are no epidemiological studies showing a link between MMR and autism. As well as the epidemiology the clinical studies also stack up against the hypothesis. Hornig et al (2008) found
strong evidence against association of autism with persistent MV RNA in the GI tract or MMR exposure.
Baird et al (2008) found
no evidence of a differential response to measles virus or the measles component of the MMR in children with ASD, with or without regression, and controls who had either one or two doses of MMR.
D’Souza et al (2006) found
no evidence of measles virus persistence in the peripheral blood mononuclear cells of children with autism spectrum disorder.
Afzal et al (2006)
failed to substantiate reports of the persistence of measles virus in autistic children with development regression.
I can understand why the NAS has taken so long to adopt its new stance. Within the NAS some of our members have been vocal in their support of Andrew Wakefeld and the MMR connection. Others have been equally vocal in opposing the idea. In the beginning I was undecided. The ham-fisted way in which the government went about reassuring us that MMR was safe was unconvincing and many of us, myself included, were inclined to give Wakefield the benefit of the doubt. See Mike Fitzpatrick’s article MMR: why government reassurances won’t work for one explanation of this widespread mistrust.
Support for Wakefield was more prevalent among parents of autistic children than it was among the general public. Our experience of government agencies in relation to diagnosis and provision for our autistic children was often fractious and confrontational. We bitterly referred to our own triad of impairments, meaning Health, Education and Social Services. The second issue of the NAS sponsored journal, Autism, in November 1997 examined the experience of 1200 families seeking diagnosis and the frustrations and dissatisfaction expressed by many parents.
Little wonder then, that if it was Wakefield versus the Government many of us were willing to give him the benefit of the doubt. The NAS was alert to our anger and was keen to bring us together to campaign for improvements in services. It had no desire to enter a divisive argument over MMR. So what has changed?
First and foremost the campaign strategy has been successful. Things are changing. We are putting autism on the statute books. The government is consulting with the NAS on a strategy for adults. The emphasis is on providing those adjustments and accommodations that will enable autistic people to lead a full and active life as contributing members of society. If some people decide to jump ship over MMR they are jumping from a successful ship.
By way of contrast, one of Wakefield’s staunchest allies is Polly Tommey. Her magazine, The Autism File promotes the MMR connection and a host of biomedical “remedies” that are supposed to reverse vaccine damage and cure autism. Yet her actions belie her words. Her latest project is to set up rural enclaves providing sheltered living and employment for autistic adults away from society.
Second, autistic adults are taking a leadership role in our campaign strategy. When it was just about the parents, as it largely was a decade ago, a diplomatic fudge made some sort of sense. But you cannot fudge the issues with an autistic person. If the science says there is no connection then why don’t we say there is no connection?
Science can cut both ways. Autistic adults insist that they are not damaged or defective. They are different. They do not want research into the causes of autism if the agenda is prevention and cure. But most research into the causes of autism is carried out in order to facilitate prevention and cure.
We managed to fudge the vaccine question for years. That era is coming to an end. Now we face important debates about the nature of autism that cannot be fudged. Autistic adults are challenging the assumptions of scientists and posing their own questions. It is not altogether clear which is the most appropriate domain for these debates: science, ethics, moral philosophy? The three most important books on my shelves at the moment are:
Representing Autism - cultural criticism
Unstrange Minds; remapping the world of autism - anthropology
The Ethics of Autism - philosophy
I am sure that there are other, equally essential works and that they will likely transgress the boundaries of traditional autism disciplines like psychology and neurology. But there again, autistic people of my acquaintance are used to transgressing boundaries (and having their own boundaries transgressed). It is we neurotypicals who become defensive when we are taken out of our comfort zone.
We may be headed for uncomfortable times but I expect them to be far more productive and ultimately satisfying than the necessary but stultifying “autism wars” we have fought around the question of vaccines which should now be over.
September 19th, 2009
Posted by
Mike |
Andrew Wakefield, MMR, National Autistic Society, adults, science |
6 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
Following on from the National Autistic Society’s I Exist campaign and the massive support for the Autism Bill in Parliament the UK Government, after working closely with an external reference group chaired by NAS chief executive, Mark Lever, has launched a
consultation process for the first government strategy to support adults with autistic spectrum conditions (ASC) to live life as full and equal citizens.
The consultation documents can be accessed online at the Department of Health. At present the consultation documents are print only but should be available to complete online before the consultation period ends on September 15th. The consultation only applies to England. The Welsh Assembly Government already has a Strategic Action Plan for Autistic Spectrum Disorders (ASD), published in April 2008. An ASD Strategic Action Plan is being finalised for publication in Northern Ireland and in Scotland the ASD Reference Group has published guidance to local agencies on commissioning services for people with autism. While these separate arrangements may reflect local differences it will be interesting to compare them in order to see how adults are being served across the United Kingdom.
The government has outlined 5 areas of need: social inclusion, health, choice and control, awareness raising and training, and access to training and employment. The NAS has a broader range of concerns on its website which it would like people to consider when completing the government questionnaire.
So, after years of being ignored or ineligible, autistic adults are finally being considered and their views taken into account in formulating statutory guidance for local authorities. So spread the word and mke sure the government hears your views.
This post first appeared on LBRB April 29, 2009.
July 11th, 2009
Posted by
Mike |
LeftBrainRightBrain, National Autistic Society, adults, government |
one comment
The latest issue of Communication, the members magazine of the National Autistic Society is out and it includes this article by me. To read the rest of the magazine you really need to join the NAS here or here for overseas membership. and to any NAS members who have come here from the magazine article, Welcome!
In the blogosphere
Blogs are online diaries or journals. Of course the content varies enormously. But there are usually a few issues that are being widely discussed in the blogosphere. President Obama’s economic package includes extra funding for scientific research including $60 million for autism research. This is discussed by Virginia Hughes on her blog. Hughes is an accomplished science writer who often contributes articles to the Simons Foundation Blog. ”A social campaigning site in the USA, http://www.change.org/ hosts an autism blog http://autism.change.org/ The writers are veteran autism blogger and parent Kristina Chew and autistic adult Dora Raymaker.
Of course, the big news in America has been the verdict in the vaccine court that there is no connection between MMR and autism. There is very little neutral ground on this issue. Those who believe that vaccines do cause autism will find support for their views on the Age of Autism If, like me you discount any connection between vaccines and autism, you will prefer Left Brain Right Brain.
For a more dispassionate view I often turn to neuroscientist, Steve Novella’s blog. See this example for his take on a recent study of hyperbaric oxygen therapy for autism. Steve also collaborates with a number of scientists and clinicians on a blog called Science Based Medicine which often discusses autism research. Even when it is not autism specific it is often relevant as with this discussion on conflicts of interests in research.
But the real attraction of blogs is writing them. Anyone can write one and publish it on the web. You do not need any programming skills, just the ability to type and something to say. Other people can read your blog and leave comments and every time you post a new article it moves to the top of your page. So blogs are always changing to show what is uppermost in people’s minds. Some of my favourites are written by parents or people on the spectrum.
Sharon is a parent in Northern Ireland who writes about life, family, autism and home education at the Family Voyage.
Casdok’s blog is about her non-verbal adult son and their struggles to obtain decent provision in England.
For an autistic view on life one example is NAS board member Larry Arnold’s blog
And finally there is you. Most of the autism blogs are based in America. But the NAS membership is as well informed and opinionated as any autism constituency here or abroad. We do not always agree but our discussions are always invigorating. I wish that more of you would start blogging and that the NAS could find a way of linking us together like the autism hub. Perhaps the next issue of Communication could include a guide to writing on the web to help get people started. And it is not just about blogging. I am just finding my feet on Face Book and now somebody wants to follow me on Twitter!
May 29th, 2009
Posted by
Mike |
Communication, National Autistic Society |
6 comments
The NAS have announced that the government is to take action in line with the proposals in the private member’s bill currently before parliament. We still have to make sure that the government acts on its word. And it will be interesting to see how they propose to finance their proposals in the current economic circumstances. But for now let us enjoy a piece of good news on the autism front and another success for the NAS campaign strategy that has focused on provision rather than prevention.
Government Responds to Autism Bill
Dear Supporter,
I am delighted to write to you about a vital new Government commitment to improve the lives of people with autism. Thanks to your fantastic support, and the crucial help of Cheryl Gillan MP, we have together succeeded in persuading the Government to address all the issues raised by the Cheryl Gillan Autism Bill.
Government Announcement
In a joint Government statement to MPs, Phil Hope MP, Minister for Care Services, and Sarah McCarthy-Fry MP, Minister for Schools and Learners have announced a far-reaching set of initiatives to improve the lives of people with autism in England. The measures announced are a direct response to the Cheryl Gillan Autism Bill and address all the outcomes sought in the Bill.
The measures include:
* A new legal duty to ensure local authorities and other local agencies include children with autism in their plans for children’s services. This will be part of a new law to be introduced over the coming year.
* Statutory guidance for local authorities to reinforce the forthcoming adult autism strategy. The Government have pledged that this will be backed up with funding and support to ensure that “the final autism strategy will have the bite it needs to be delivered”. A consultation on the Autism Strategy will start in April.
These measures, and further details announced today, will compel local authorities to take account of people with autism and their needs, and enable people to challenge their local authority in court if they fail to do so.
What now for the Autism Bill?
Public and parliamentary support for Cheryl Gillan MP and the Autism Bill has been overwhelming. To date around 6,000 people have contacted their MP about the Bill, and we have now exceeded our target to have 100 MPs attend the debate in Parliament on 27 February (in fact we now have 115 MPs)!
The strength of public opinion and the knock-on effect in parliament has prompted the Government announcement above. The measures set out by Ministers cover all aspects of the Autism Bill. Cheryl Gillan MP said: “It was critically important to me that my Private Members’ Bill should cover an area that ordinarily would be overlooked ? today’s announcement is a testament to the weight of support from my colleagues and autism campaigners. I will keep campaigning until I hear the Government pledge to fully support people affected by autism in Parliament. The real test will be in how they implement this package of measures in the long term.”
The parliamentary support for autism that you have helped to build, and the debate on 27 February in the House of Commons, can now be used to secure these Government commitments, and to explore the details of how each measure will be implemented.
Thank you so much for your help in securing this huge step forward for people with autism.
With best wishes,
Mark Lever
Chief Executive
The National Autistic Society
February 22nd, 2009
Posted by
Mike |
National Autistic Society, adults, campaigns, government |
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