The InterAgency Autism Coordinating Committee is on the last day of its public consultation on the Strategic Plan for Autism, 2010. I just made the cut with my contribution after reading this opening to the Introduction to the Plan.
Two decades ago, autism was a little known, uncommon disorder. Today, with prevalence estimates increasing at an alarming pace, autism is emerging as a national health emergency. Autism is now recognized as a group of syndromes denoted as autism spectrum disorder (ASD). The most recent Centers for Disease Control and Prevention (CDC) prevalence estimates of ASD for children are 1 in 110 (CDC, 2009). These estimates, more than ten-fold higher than two decades ago, raise several urgent questions: Why has there been such an increase in prevalence? What can be done to reverse this alarming trend? How can we improve the outcomes of people already affected, including youth and adults?
This is my response.
As a UK resident may I offer an alternative perspective on autism to the one you present in your introduction? You suggest that there has been an alarming tenfold increase in prevalence since 1990, from 10 in 10000 to 110 in 10000, that constitutes a national health emergency.
Yet as far back as 1996, Lorna Wing[1], writing in the British Medical Journal offered a tentative estimate of 91 in 10000 based on epidemiological studies in Britain[2] and Sweden[3] carried out on children born before 1970 and 1985 respectively.
Wing suggests that broadening the criteria, increased awareness of ASD, particularly as it affects those without cognitive impairments and an increase in referrals for diagnosis may explain the apparent growth in prevalence. Until recently children in the UK with developmental delays were not usually referred for specialist diagnosis. Children were allocated to specialist provision on the basis of their IQ. Local Education Authorities made a virtue out of assessing individual educational need rather than applying labels. The needs of high functioning children in mainstream schools remained unrecognized and unmet. If, as a result, they became disruptive they were treated as maladjusted. In the USA autism has only been an officially notifiable diagnosis within the education system since the early 1990s. It is instructive that while the number of children diagnosed with autism has increased dramatically since 1998 the number of children served by IDEA in US schools has remained between 10 and 11 percent. [4]
This does not rule out the possibility of a real increase but it does suggest that any increase will be far more modest than the 10 fold increase that you suggest. It is unlikely that the USA is facing a massive growth of autism amongst young people sufficient to constitute a “national health emergency.”
The immense costs to society of ASD are often taken to include massive increases in demand for adult services as young people mature. But if there has not been a dramatic increase in numbers it is logical to assume that masses of undiagnosed adults are already amongst us. The first ever study of prevalence amongst adults in the UK [5] suggested that there are around one per cent living in the community. Most of them lacked educational qualifications, were single and not in receipt of services. A previous report by the National Autistic Society, “Ignored or Ineligible”[6] found that most autistic adults, whether high functioning or low functioning had needs that were not being met. Whatever the costs of autism, they are not being substantially borne by a society that ignores the reality for autistic adults. The costs are privatized as familial poverty and deprivation. When adults do take up services it is not to meet their needs as autistic individuals. Rather, they become a burden on psychiatric or custodial services because their autistic needs have not been met.
The need for an expansion of services for autistic adults need not be an economic burden. Again look to the UK. An Audit Commission report[7]) into services for autistic adults found the following.
- We explored the possible impacts of providing specialised health, social care and employment support for adults with high-functioning autism. Wider implementation of such services would require additional expenditure, for example an estimated £40 million per year by Primary Care Trusts and Local Authorities to provide specialised health and social care teams across the whole of England. Evidence from existing specialised services does however indicate that they can improve outcomes for service users, and our model suggests that the costs could over time be outweighed by overall public expenditure savings.
- A key factor would be the proportion of the local population with high-functioning autism identified by specialised services and given appropriate support, for example to live more independently or to obtain and retain employment. We estimate that if such services identified and supported around four per cent or more of the adults with high-functioning autism in their local area, they could become cost-neutral across public spending as a whole over time, as well as resulting in additional earnings and reduced expenses for individuals.
- Increasing the identification rate further could result in greater financial benefits over time. On a number of key assumptions, for example regarding housing settings and employment rates, some of them based on limited data, our model suggests that a six per cent identification rate could lead to potential savings of £38 million per year, and an eight per cent rate to savings of £67 million. Further work is needed to quantify the potential costs and benefits more precisely, and to explore in more detail the potential impacts of implementing such services.
I would suggest taking a step back from the rhetoric about a burgeoning epidemic with dire economic consequences. Instead you should embrace the benefits that accrue from acknowledging the true scale of ASDs in society. You should prioritize efforts to identify autistic adults across the life span and make provision to meet their needs. And, as the National Audit Office report from the UK shows, doing the right thing by autistic people is both fiscally and morally sound. Do the right thing, America.
References:
- BMJ 1996;312:327-328 (10 February)
- Wing L, Gould J. Severe impairments of social interaction and associated abnormalities in children: epidemiology and classification. J Autism Dev Disord 1979;9:11-29.
- Ehlers S, Gillberg C. The epidemiology of Asperger syndrome. A total population study. J Child Psychol Psychiatry 1993;34:1327-50
- http://www.autismstreet.org/weblog/?p=217#more-217
- http://www.ic.nhs.uk/pubs/asdpsychiatricmorbidity07
- http://www.autism.org.uk/en-gb/about-autism/autism-library/magazines-articles-and-reports/reports/our-reports/ignored-or-ineligible.aspx
- http://www.nao.org.uk/publications/0809/autism.aspx
July 31st, 2010
Posted by
Mike |
Autism epidemiology, adults, autism advocacy |
6 comments
This appalling story arrived in my inbox from a person I trust.
Please sign the petition to get Steven home and share his story with your networks.
The campaign to bring Steven back to his family home starts here.
Steven is a 20 year old man with autism. He loves music, swimming and Mr Bean.
Since December 2009, Steven has been incarcerated in a care home, against his and his family’s wishes. He went away for three days respite as his father was unwell and hasn’t been home since.
On 7th July, the London Borough of Hillingdon decided Steven would never be allowed to return to the family home as he is too great a risk.
Since being in the care home, occurrences of his challenging behaviour have risen by over 300%.
In April, Steven was served a “Deprivation of Liberty” order as he escaped from the home and removed a man’s glasses. No staff on duty noticed he was gone until he was out on the main road.
His clothes are repeatedly torn and he appears with bite marks on his arms and hands (not self inflicted).
He has tried to escape on several occasions.
He is repeatedly forced into a double bind situation where the managing authority create a situation that he finds difficult to understand and gets upset about. Steven reacts to the situation and then his reaction is used as evidence that he is too challenging.
In the last two weeks the London Borough of Hillingdon have cancelled Steven’s much look foward to holiday and his overnight stays at home.
He is 20 years old and could be facing the rest of his life in an institution
The Deprivation of Liberty Safeguards (DOLS) where only introduced after an autistic man successfully brought a case before the European Court of Human Rights. According to the Deprivation of Liberty Safeguards Code of Practise:
The deprivation of liberty safeguards were introduced to provide a legal
framework around the deprivation of liberty. Specifically, they were introduced
to prevent breaches of the European Convention on Human Rights (ECHR)
such as the one identified by the judgment of the European Court of Human
Rights (ECtHR) in the case of HL v the United Kingdom3 (commonly referred
to as the ‘Bournewood’ judgment). The case concerned an autistic man
(HL) with a learning disability, who lacked the capacity to decide whether he
should be admitted to hospital for specific treatment. He was admitted on
an informal basis under common law in his best interests, but this decision
was challenged by HL’s carers. In its judgment, the ECtHR held that this
admission constituted a deprivation of HL’s liberty and, further, that:
- the deprivation of liberty had not been in accordance with ‘a procedure prescribed by law’ and was, therefore, in breach of Article 5(1) of the ECHR, and
- there had been a contravention of Article 5(4) of the ECHR because HL had no means of applying quickly to a court to see if the deprivation of liberty was lawful.
To prevent further similar breaches of the ECHR, the Mental Capacity
Act 2005 has been amended to provide safeguards for people who lack
capacity specifically to consent to treatment or care in either a hospital
or a care home4 that, in their own best interests, can only be provided in
circumstances that amount to a deprivation of liberty, and where detention
under the Mental Health Act 1983 is not appropriate for the person at that
time. These safeguards are referred to in this Code of Practice as ‘deprivation
of liberty safeguards’.
The code of Practice is supposed to supplement and not replace the provisions of the Mental Capacity Act (2005). According to the government’s own strategy for adults with autism, Fulfilling and Rewarding Lives:
Mental Capacity Act (2005) – came into force in 2007 providing a clearer legal framework for people who lack capacity, for those caring for them and for the professionals who work with them by setting out key principles. It puts people who lack capacity at the heart of the decision-making process – this includes people with autism and those who may not find it easy to express their choice in words. The Act requires an assumption that people have capacity to make decisions for themselves unless there is evidence to the contrary.
Fulfilling and Rewarding Lives specifically instructs local authorities to take account of the views of autistic adults, their carers and their families when assessing need.
Such an assessment, carried out by trained practitioners and taking account of the communication needs of adults with autism, will be the key to unlocking care services throughout a person’s lifetime. It will provide a comprehensive view of the person’s condition and how it affects them – drawing on the experiences andviews of the person themselves, their family
and carers.
The DOLS Code of Practice is also clear about the need to take account of the person’s family. Too often in the past parents have felt excluded by adult services because legally they have no rights over their children once they become adults. Decision makers are obliged, under the Code of Practice to take account of
the views of the relevant person, their family or carers? Do any of them object to the measures?
They have a duty to minimize the likelihood of a Deprivation of Liberty Order
by minimising the restrictions imposed and ensuring the views of the relevant person, their family or carers. Do any of them object to the measures?(2.7 page 18)
Following a Deprivation of Liberty Order they are obliged to
Take proper steps to help the relevant person retain contact with
family, friends and carers.
Remember that Hillingdon Borough Council have stopped Steven’s home visits and decided he will never be allowed to return to the family home. His family feel so excluded from the decision making progress that they have resorted to an online petition in order to try and exert some influence on the Council.
It is unclear on the evidence so far whether or not these “safeguards” will be used primarily to protect the rights of people like Steven Neary or whether they will be used to protect local authorities who will continue to be able to breach the human rights of those in their care providing they can show that they have followed the letter if not the spirit of the law.
July 18th, 2010
Posted by
Mike |
adults, disability rights, services |
10 comments
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
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 |
one comment
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
Hi everybody. I have been too busy to blog recently - first it was writing up school reports then I went on holiday. I still am on holiday in Australia. But I thought I better get this out straight away. It comes from an email from Michael Barron, one of the founding fathers of the NAS. Those parents who founded the NAS way back when in 1962 are getting old and so are their children.
So Michael has helped to organise the first national conference on autism and old age. The recent NAS “I exist” campaign has given a voice to many other autistic adults who often grew up without the benefit of early diagnosis and campaiging parents. They are the new pioneers of autism. I hope that this meeting will provide an opportunity for them to unite with those early autism parent pioneers to help to secure a future for all autistic adults who are entering into old age.
http://www.ncl.ac.uk/iah/autism/
First National Meeting on Ageing in People with Autistic Spectrum Conditions:
What about old age?
Venue: The research Beehive, Newcastle University 29. October 2009 09-17.00
Aims: The meeting will address the ageing process and problems in people with Autistic Spectrum Conditions. Topics:
- Identifying medical, nursing, social, housing, human rights and other age-related needs
- Scale of demand for services across the UK
- Role of both the Department of Health and local authorities in assessing demand and costs, and of the voluntary sector in providing services.
How to Book:
Download the full meeting flyer and booking form
Organisers:
Dr. Elizabeta Mukaetova-Ladinska,
Mr Michael Barron, MBE
Prof. Elaine Perry
Invited Speakers:
*to confirm
*Virginia Bovell, OBE, Founder Parent of TreeHouse, TreeHouse Adviser and NAS Councillor
Professor Isabel Cottinelli Telmo, Council of Administration, Autism-Europe
Professor Margaret Esiri, Neuropathology, Oxford University
*Professor Francesca Happe, King’s College, London
Elaine Hill, Specialist Adviser for Autism, Department of Health
Professor Tony Holland, Developmental Psychiatry (Learning Disabilities), Dept of Psychiatry, School of Clinical Medicine, Cambridge University
Professor Greg O’Brien, Learning Disabilities, Northumberland, Tyne & Wear NHS Trust, Northumbria University
Psychological Changes and Cognitive Impairment in ASC:
Professor Dermot Bowler, Dept of Psychology, City University, London
Ageing in ASC:
Dr Ian James, Consultant Clinical Psychologist,
Northumberland, Tyne & Wear NHS Trust
Michael Baron, MBE, Chair NAS 1962-67, Parent
Dr Michael Fitzpatrick, GP, Parent
Potential Therapies:
Dr Elizabeta Mukaetova-Ladinska, Consultant Old Age Psychiatrist/Clinical Lecturer, Newcastle University
Professor Elaine Perry, Neurochemical Pathology, Newcastle University
Palliative Care in Learning Disability:
Dr Claud Regnard, Consultant in Palliative Medicine, St Oswald’s Hospice, Newcastle upon Tyne
Medical Problems in Elderly ASC:
Professor John Starr, Edinburgh University
Ageing Services for ASC:
Richard Mills, Director of Research, NAS
Carol Povey, Head of Adult Services, NAS
Dr Gina Gómez de la Cuesta, Action Research Leader, NAS
Download the full meeting flyer and booking form
August 10th, 2009
Posted by
Mike |
adults, parents |
9 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
