Action For Autism

Supporting Autistic People

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, Uncategorized, adults, campaigns, government, politics | one comment

Autistic Adult Strategy published in the UK

The UK government have published their strategy for autistic adults, Fulfilling and rewarding lives: the strategy for adults with autism in England. This was welcomed by the National Autistic Society.

The National Autistic Society (NAS) is pleased to welcome the publication of the first ever strategy for improving the lives of adults with autism in England.
Last year, when we achieved the Autism Act 2009, we committed the Government to publishing an Adult Autism Strategy to transform services for adults with autism. The publication of this strategy meets this commitment.
The strategy sets out a number of key actions and recommendations for central Government as well as for local authorities, the NHS and Jobcentre Plus.
In particular, we welcome the following aspects of the strategy.
• Improved training of frontline professionals in autism.
• The recommendation to develop local autism teams.
• Actions for better planning and commissioning of services, including involving people with autism and their parents/carers in this process.
• Actions for improving access to diagnosis.
• Leadership structures at national, regional and local levels to support delivery.
• Proposals for reviewing the strategy to make sure that it is working.
We are particularly pleased that the strategy encourages the development of local teams and the development of local autism partnership boards.
These were key actions that we have been calling for throughout the development of the strategy.

I have just read the report and it is an important step forward. I do have a couple of concerns about the strategy. Michael Baron, who organized a conference on ageing and autism last year copied me into an email that points out that the needs of elderly autistics are largely ignored. This may be because care of the elderly, with or without autism, is low on the government’s list of priorities. Michael also suggests that there is little in the strategy for severely impaired individuals who are least able to offer themselves for employment.

The economic crisis means that there is little money for new initiatives and I am not encouraged by this passage from the strategy.

This not only reflects the current economic
situation, where every public sector
organisation is facing budget restrictions
and is required to do more with less, but is
also in line with the Government’s overall
policy direction of reducing statutory
requirements and encouraging frontline
staff to develop services and solutions
to meet local needs. While we recognise
that these factors make it a difficult time
for public services to respond to a new
strategy, we can no longer ignore the moral
imperative to address the unmet needs of
so many members of our society.

How do they propose to meet a moral imperative without additional financial resources? Part of the answer is in helping autistic people to find jobs.

Over the last few years, the Government
has made it clear that work is the best form
of welfare, the most effective route out of
poverty and a vital part of social inclusion.
However, adults with autism are currently
significantly under-represented in the
labour market. That is why chapter 5 looks
at how we will help adults with autism
into work. It explains changes underway
to the welfare system to better support
adults with autism, through effective work
preparation programmes and through
improvements to our benefits and tax
credit systems.

In the middle of a recession with mass unemployment this may not be realistic. There are lots of autistic adults who are quite able and willing to work right now. What we need is a programme for employers who may be doubtful of the wisdom of employing autistic people and a programme to support autistic people once they are in employment. The structural factors in the labour market that contribute to autistic unemployment are at least as important as the personal difficulties that some autistic people need help with.

Another part of the answer, suggested by the National Audit Commission report which helped to inform this strategy is that timely provision of services may be cost effective if it saves on long term provision and support for people in crisis. In the past this sort of intelligent financing has failed because there is no incentive say for social services to spend money that reduces future costs to the health service. Managers are concerned to defend departmental budgets and have no incentive to contribute to global savings. It will be interesting to see how this is actioned.

The real deal will come in December when the government publishes statutory guidance which will impose duties on agencies to act to meet the strategy. That was mandated by the Autism Act and is a legal requirement that will still be there after the general election, whichever party comes to office.

On balance this is a good start. But this is a long haul, not a quick fix. And as ever, as pointed out by Zoe Thompson on Facebook, it will depend on how well it is resourced and who is monitoring the outcomes.

March 5th, 2010 Posted by Mike | adults, campaigns, government, services | no comments

Asperger boy is “too bright for services”

We the undersigned petition the Prime Minister to Better support, services, SEN assessments & statements for children with Aspergers in primary school.

Claire Parkinson has created this petition because

Today I become the voice of my 9 yr old son diagnosed with Aspergers. Since he was diagnosed over 1 year ago his primary school has refused any extra support, services or even a SEN assessment. Reason they say his to clever. Suffering with a social communication disorder with added sensory issues I feel help is needed. He has been excluded for not following instructions and once back he is excluded from lunch breaks as staff can’t handle him. I will have to collect and take him home everyday for 1 hr. Help! He has special educational needs and a statement is his only way forward in mainstream school. He is who he is and he should not be punished for this.

UK residents and British citizens are eligible to sign. Please  sign the petition

Claire’s dilemma illustrates the issues surrounding the proposal to merge Aspergers and Autism in a single Autistic spectrum Disorder in  DSM-V. Having a diagnosis of Aspergers is no use if it is used to deny access to services, as has happened in the case of Claire’s son.

Whatever the eventual outcome it is clear that, so long as authorities use diagnostic categories as one size fits all gateways to services, problems like this will always occur. Individual assessment and provision tailored to meet identified needs will always be required regardless of the presence or absence of any diagnostic label.

February 19th, 2010 Posted by Mike | DSM, aspergers, campaigns, services | 4 comments

Gary McKinnon - campaign update

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

Don’t Write Me Off

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

Autism Bill Progresses in Parliament.

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

OPEN YOUR EYES TO AUTISM - London Rally

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

Government Responds to Autism Bill

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 | 8 comments

Action for Children end TV ad campaign

The Action for Children TV commercial about the Story of Dan, a young man with Asperger Syndrome will not be shown after tonight, Sunday 8th February. According to the Action for Children blog the campaign was always meant to end today. Which is strange because both Barbara Jacobs and I received emails from Action for Children which said the commercial would run until next Sunday.I published mine here.

Action for Children’s responses to their critics have been confusing and inconsistent. It seems that different people from different departments have been dealing with a public furore which they clearly did not expect and struggled to understand. Initially people wrote to Gary Day, head of Supporter Care at Action for Children. Sharon published his reply to her in which he stated that

Dan tells his own story in his own words, and he chose to name his condition, the drawings that you see were also drawn by Dan, the pictures depict how he saw himself before we as a charity got involved and helped Dan and his family.

When I wrote I received an out of office reply and subsequently an email from Emma Alford, the Contact Centre Manager which was slightly different.

In our second advert, Dan chose to name his condition and approved the concept and drawings. These pictures depict how he saw himself and what he felt he needed help with before Action for Children helped Dan and his family for a number of years.

The blog is written by Fiona Lydon who works in the communications team at Action for Children. She writes,


The monster in the advertisement is absolutely not Dan’s autism. It is the way that he himself described how he felt his behaviour was before getting this support. Dan wanted to talk specifically about his autism and we believe it would have been wrong for us to censor him or his ideas in any way.

We also learn from Fiona that Dan was a victim of late diagnosis. This combined with lack of support meant he did not understand his behaviour. He and his family were under pressure that could have been avoided if the right support had been in place. According to Fiona Action for Children provided that support. Dan was a success story and he wanted to tell his story in his own words.

The monster in the advertisement is absolutely not Dan’s autism. It is the way that he himself described how he felt his behaviour was before getting this support. Dan wanted to talk specifically about his autism and we believe it would have been wrong for us to censor him or his ideas in any way.

As I pointed out in my reply on their blog (currently in the moderation queue - well it is Sunday night) presenting Dan’s view without any comment or clarification is not about censorship. It shows a lack of responsibility. And if, indeed, the monster was not a depiction of autism, but was in fact a depiction of the anger and frustration that autistic people feel when they are not properly supported or understood, can we look forward to a sequel in which Dan can talk about his autism in a new light now he is getting the support he needs?

So we have had mixed messages, contradictory statements and a slowly emerging back story of late diagnosis and anger and frustration at the lack of support and understanding that helps to explain the ad. BUT the millions who saw the ad on TV do not have access to that back story or the insights that come from a personal acquaintance with autism. A campaign that has to explain itself after the event has failed in its purpose. Let us hope that lessons will be learned and that not too much actual damage has been done.

February 9th, 2009 Posted by Mike | campaigns, ethics | 7 comments

Action for Children reply to critics

Like many of you I wrote to Gary Day at Action for Children about the Story of Dan ad campaign. Because some of you had already shared your replies  I pointed out that I was not interested in their stock response. So they replied with … a stock response. My letter first

Dear Mr Day,
I am writing to express my concerns about the campaign materials featuring Dan, a young man with Aspergers Syndrome. I know from your reply to my colleague Harry Williams that you feel justified in using Dan’s words and drawings to illustrate his difficulties. But in so doing you are reinforcing stereotypical attitudes to autism that are damaging in the extreme.

Dan has learned to see his autism as a monster that consumed him and caused him to behave in unacceptable ways. It is his fault he reacts badly to people who bully and tease him. It is the autism to blame for him being sent away to school. The staff taught him to correct the error of his ways and thanks to them he is a better person.

This may be how Dan sees the situation but the TV ad suggests that this is how Action For Children see it as well. And this is the message that is going out to the general public. Autism makes children behave badly. It is a monster that is taking our children. Action for Children will help your child to trample its autism under foot and become a better person. That is the message that autistic adults and the parents of autistic children are taking from your advert and we reject it utterly.

When I visited your website I was perturbed to read “”Today Headlands – as it is now known – is a very special place. It is a residential and day school for children with emotional and behavioural difficulties, like autism.” I have been a teacher in special education for 25 years. I can assure you that children with emotional and behavioural difficulties and autistic children are different. The former have had damaging life experiences that cause their problems. The latter are born with a neurological difference that affects the way they process information.

Then I went to “Meet Dan.”

Slide 2 reveals very low self esteem.
“I was loud and obnoxious and generally bad tempered”

Slide 3 describes his fear.
“I was just afraid of what was out there, afraid one day that I’d leave my parents and not be able to survive or anything like that.”

Slide 4 has more self loathing
“I wasn’t a great brother or son.”

Slide 5 The transition to Headlands was not well managed.
“I felt hurt. I felt betrayed by being left there.”

Slide 6 Dan was really miserable.
“I thought no-one really cared. I sat alone in my room alone and just … I was really upset.”

Slide 7 The misery continues
“after a few months, a year of being there I got a bit steadier.” A year?!

Slide 8 Things get better when Dan learns that his problems are his lack of respect and his lack of honesty.
“People have said that Dan you are a lot more respectful, you have been  a lot more honest and people have given me their trust.”

Slide 9 Dan expresses his gratitude to his carers and teacher.

Slide 10 Dan expresses his new found confidence, describes his skills and his sense of peace.

For all I know you have done a great job with Dan. You have taught him that because he is autistic he sees the world differently from the neurotypical majority; that their lack of understanding is the root of his problems. But by understanding himself and learning to make allowances for their lack of understanding he can avoid unnecessary confrontations. You have boosted his self esteem by identifying his strengths and giving him success. This gives him a secure base from which to tackle the real problems that he has and also gives him confidence to face the future.

But the evidence of your campaign suggests that you have taken a desperately unhappy, fearful child and taught him that all his problems were internal to himself and that it is up to him to change. Compliance brings its own reward. This may not be your intention, but it is what many of us in the autism community are taking from your campaign.

I note that you have invited people to express their concerns by complaining to the Advertising Standards Authority. I have no interest in seeing a dodgy advert pulled if the attitudes that inform that campaign and, presumably, inform the practise of Action for Children in relation to the care and education of autistic children, continue unchanged. I would much prefer to contibute to a dialogue that contributes to a better understanding of the needs of autistic people.

I am, as previously mentioned, a special needs teacher of 25  years experience. I teach in an all age school for pupils with severe learning difficulties. For 23 years I have parented a son with Aspergers syndrom. I am active in the National Autistic Society. I write and speak on autism and maintain a blog, Action for Autism, which is accessible via my sig file below.

Their stock response

Thank you for your email and for raising your concerns over our recent television advert. I am sorry to hear the content of this advert has caused you offence or upset.
Action for Children’s three new adverts focus on how the charity helps to transform the lives of the most vulnerable children throughout the UK. For 140 years we have been committed to children and young people being at the centre of all our work. Therefore these new adverts tell real stories of young people, told by them, in their own words.
In our second advert, Dan chose to name his condition and approved the concept and drawings. These pictures depict how he saw himself and what he felt he needed help with before Action for Children helped Dan and his family for a number of years.Action for Children helped Dan gain control over aspects of his behaviour - this was about helping him feel more at peace with himself, as he states in the advert, and clearly his autism is an intrinsic part of himself. The animation in the advert is a representation of Dan’s own individual feelings of anger and frustration, not of autism.

Action for Children is a major provider of services for disabled children,including some with autism, We have other significant areas of work as well, and are a leading charity working with over 178,000 of the most vulnerable children, young people and their family members.
The advert will be running until the 15th February. If you would like to further your complaint or concernsabout our advertisements then you can do this by contacting the Advertising Standards Authority at www.asa.org.ukThey will look in to your complaint and if your concerns are upheld then we will be instructed to change or remove the advertising.

I wonder if they even read my letter. For the record I am neither upset nor offended by the ad. I am concerned that it perpetuates a stereotypical image of autism that, with its monster imagery,  harks back to myths of changelings and demonic possession. These myths still resonate powerfully throughout society to reinforce the new mythology of children trapped inside their autism (There’s a Boy Inside) or stolen. When Suzanne Wright of Autism Speaks says;

here is a beautiful little boy in my family who has been kidnapped by autism … and we are going to get him back.

there is a direct connection to the short lived Ransom Notes campaign. Then NYU’s response to criticism was to issue a form letter. Action for Children repeat the same theme with minor variations on ording. I find the invitation to complain to the ASA significant, along with the fact that complaints are being dealt with by “Supporter Care.”

Action for Children is a charity. It does things for children and often it does them very well. It knows what it is doing and needs no advice from any of us thank you very much. It just wants our money so it can carry on doing good things for children. Hence the advertizing campaign. Those of us who complain are characterized as being upset by the shocking reality it presents to us. But it has no interest in engaging in dialogue. If the ASA decides it was wrong to offend us with its ad the ad will be withdrawn. Never mind that by the time the ASA delivers its judgement the campaign will be over.

But that is no good to me. How many more Dans are being taught to trample on their autism monster in order to become a better person? I am going to persevere with my attempts at dialogue with Action for Children and try to change their minds about autism.

However, if you are going to complain to the ASA, the Let’s stop “Action for Children” from demonising autistic children camqign on Face Book  has an excellent discussion on how to do it.

January 29th, 2009 Posted by Mike | Autism rights, autism advocacy, campaigns, ethics | 13 comments