Action For Autism

Autism Speaks to confusion within its ranks

Autism Speaks in two minds

The furore over the “I am autism” video commissioned by Autism Speaks is reported online in the New Scientist today. The report links to the video, which is strange because when Alan Griswold sent an open letter protesting about the video to Dr Geraldine Dawson, the chief science officer at Autism Speaks she replied as follows.

Dear Mr. Griswold,

Thank you very much for sending me your letter and telling me about your perspective and feelings regarding the “I Am Autism” video. I understand and respect your perspective and I am truly sorry that the film offended you. The video was not intended to reflect Autism Speaks broader viewpoint or attitude toward persons with autism spectrum disorder. Rather, it was created by two fathers of children with autism – Billy Mann, a Grammy-nominated songwriter, music producer and Autism Speaks board member, and Alfonso Cuarón, an Academy award-nominated film director. It is based on a personal poem written by Mr. Mann. It is an intensely personal expression by these two fathers. It was their hope that the piece would inspire other voices and artists in the autism community. It has greatly offended some people, however, and we have removed it from our website.(emphasis added)

Again, thank you for writing to me and sharing your thoughts. You can rest assured that I will continue to advocate for a respectful and compassionate attitude and support for persons with autism spectrum disorder.

Sincerely,

Geri Dawson

While it is true that the page containing the video is an orphan page and the revised press release does not contain the video, it is still up on the Autism Speaks official You Tube video channel. and the revised press release still refers to the film as follows.

Academy Award-nominated director Alfonso Cuarón and Grammy-nominated songwriter/producer Billy Mann unveiled a video they created especially for this event, called “I Am Autism.” The powerful short film combines footage of individuals with autism and their families from around the world with a poem written by Mr. Mann read by a multitude of voices to show the global face of autism.

So, what is it to be? Is it An intensely personal expression by these two fathers, or the global face of autism?

Marc Sirkin, chief community officer at Autism Speaks who was interviewed by New Scientist does little to resolve this contradiction. According to him,

the film is “a personal statement based on the viewpoint of the two parents who created the film”.

Two parents? Alongside the video on the Autism Speaks video channel is another from AS co-founder Suzanne Wright. We are invited to

Watch Autism Speaks Co-founder Suzanne Wright deliver a personal message asking supporters to help create the film “I am Autism”

On September 22, 2009, First Ladies and dignitaries from around the world will attend Autism Speaks’ Second Annual United Nations World Focus on Autism. At this meeting, Academy Award-nominated director Alfonso Cuarón and Grammy-nominated songwriter/producer Billy Mann will unveil their video “I am Autism.”

Alfonso and Billy need your help to create this unique film – send us video footage of people from around the world who are on the autism spectrum. The footage will underscore the gravity of this global health crisis, and inform those in a position to effect a change. Alfonso and Billy are looking for footage of people of all ages, all socioeconomic backgrounds and all ethnicities.

The film was being promoted at the highest levels within Autism Speaks. One of the film makers, Billy Mann, is a board member of Autism Speaks. Autism Speaks organized the collection of parents’ videotapes and handled all the necessary legal stuff like disclaimers and permissions. They chose to launch it at a high profile event at the United Nations and it formed the centrepiece of their original press release for the event. It is still on their website and their video channel.

I think it is reasonable to assume that if the film had received universal acclaim rather than the widespread criticism that was sufficient to propel the controversy into the mainstream media, Autism Speaks would have taken the credit instead of back pedalling and trying to present the film as a personal statement by two fathers that had nothing to do with them.

Autism Speaks’ revealing remarks

Marc Sirkin defended the video in these terms.

“We have received both positive and negative feedback. Some parents have found the video inspiring and have thanked us for showing it. Others have been offended by it. We believe that all perspectives are valid and need to be heard and respected. No one perspective can ever be the definitive voice of autism.”

It seems to me that he is referring to parental responses here and ignoring the fact that most of the protests have been organized by autistic self advocates. The online response mostly articulates the views of these same autistic self advocates. This parent centred viewpoint is reflected in the statement that “all perspectives are valid and need to be heard and respected.”

Really? Even those that have been discounted after thorough investigation and research?; Refrigerator mothers anybody? How about holding therapy or packing? That one is still going on in France supported by psychoanalytical perspectives on autism. How about exorcism?

Clearly not all perspectives are valid or deserving of respect. But Autism Speaks has always been an uneasy alliance of two perspectives; the mainstream scientific consensus that autism is a brain disorder of genetic origin and the popular belief that it is primarily a whole body disease with environmental causes. The former perspective suggests a strategy of genetic research aimed at prevention and cure. The latter wants research into toxins and biomedical cures. It has become increasingly anti-vaccine and anti-science. Both exist within Autism Speaks in an uneasy alliance in which both perspectives are valid.

The one perspective that is not represented within Autism Speaks is that proposed by autistic self advocates, namely that the most disabling aspects of autism are social in origin. The problem is understanding. If we make the effort to understand autism and provide appropriate support at a community level autistic people would stand more chance of making their way in the world without having to face stigma and prejudice. Will Autism Speaks ever accept that view as “valid and need[ing] to be heard and respected?” When can we expect to see videos from autistics and their allies being presented by Autism Speaks?

September 30th, 2009 Posted by Mike | Autism Speaks, autism advocacy, parents | 28 comments

Autism and Aging

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

The present crisis and the National Autistic Society

This blog is an infomercial for my favourite autism charity - The National Autistic Society.

The present financial crisis is already affecting the voluntary sector. Charities are  suffering as the recession affects people’s ability to give. In the UK at least 20 charities have lost an estimated £125 million in reserves that were placed on deposit in high interest accounts with the Icelandic banks that crashed last week.

There are some really tragic stories like a children’s hospice that lost £5 million. Some charities have lost all their reserves and may go out of business. Local authorities may have fared even worse - they had over £1 billion invested in Iceland. This money is lost. And, unless the government steps in the only way for local authorities to recoup their losses will be to raise taxes and cut services. This, of course, will impact upon the most vulnerable people in society who depend upon council services. Charities who would normally step in to fill the gap are already operating on reduced budgets.

I think the government should intervene. This week they announced a £500 billion rescue package for the banks. Another billion to help the real victims of the recession does not seem out of place. But a change in the tax laws could make things even worse for charities. The irony is that it is a measure that was introduced earlier this year to close a loophole that was being exploited by the banks and finance houses, of all people! They were employing tens of thousands of staff on rolling, temporary contracts in order to evade payment of hundreds of millions of pounds in national insurance contributions to the Treasury. The government response was to introduce a charge on the banks of 17.5% on the salaries of temporary staff. But many charities operate with a tiny full time staff and employ temporary staff to deliver projects. They too will be liable to what is effectively a payroll tax of 17.5%. Coming on top of everything else this will be enough to force some charities to close down.

The National Autistic Society

The National Autistic Society is OK for now. We have a prudent level of reserves that are securely invested and most of our staff are on contract. But our future income faces downward pressures. Local authorities who buy into NAS services will probably be operating on reduced budgets and people who donate money to support things like our helpline and training for parents of newly diagnosed children will also be feeling the pinch.

Whatever happens to the economy, we are not expecting to see a recession in autism. Millions will continue to visit the NAS website. Tens of thousands will continue to ring the help line. Thousands more will use the information and advocacy services, attend the Help! meetings etc. And hundreds of adults and children will benefit from the direct provision of a range of services by the NAS such as schools, residential homes, day centres and supported employment schemes.

Simply the best

I believe that the NAS is the best national autism organization in the world today. We provide a wealth of services. We are actively encouraging autistic people to take a leading role with seven diagnosed autistic people elected to the Council and one elected to the Board of Trustees. Parents like myself remain in the majority but we have just elected our first sibling councillor as well.

Honesty

The current campaign, that began with Make Schools Make Sense and continues with I Exist, combines honesty about the problems that autism can bring with a positive attitude towards autistic people and their ability to make a difference in their own lives if we can give them a fair chance.

The latest stage of the campaign is darker and focuses on what happens all too often when autistic people and their families are not given a fair chance. Bullying, isolation and despair are the triad of consequences if people are not given a fair chance. So building the paid up membership and stepping up our fundraising is very important right now. We want to make a difference and we need your help.

Join Us!

Anyone can join the NAS. We have national and international membership; individual and organizational membership; family membership and concessions for autistic people, students and the unemployed.

Donate!

Anyone can give money to the NAS. If you are a UK taxpayer remember to tick the the box for giftaid.

Volunteer!

Not everybody has money. But we all have time and skills. Consider donating your time or your expertise to the NAS. We need volunteers for things like our help line and our parent to parent scheme (training provided). We need skills that can make a difference at local level -  expertise in fundraising, accountancy, advocacy, publicity, etc. One branch might need a web site designer. Another wants a befriender. Contact the national office if you want to help.

Thank You!

This has been an infomercial on behalf of, but not authorized by, the National Autistic Society.

October 12th, 2008 Posted by Mike | National Autistic Society, Uncategorized, autism acceptance, autism parents, parents | 5 comments

An Alliance for Autism

I am still curious as to whom Mady Hornig and Ian Lipkin consulted in the “autism parent/advocacy community” before carrying out their recent study that found no association between  the MMR vaccine and Autism and no association between the MMR vaccine and GI disorders. So I wrote to the press officer.

Your press release entitled “Study Firmly Shows No Connection Between Measles, Mumps, Rubella (MMR) Vaccine And Autism” quotes Professor Lipkin as saying,

“The study design process was a critical piece for us, as there is still so much public concern over the safety of the MMR vaccine. For this reason, we involved the autism parent/advocacy community as we designed the study to ensure that all issues were being addressed. We are hopeful that this process of community engagement will build important partnerships among members of the autism community, physicians, public health agencies, and clinical researchers; serve as a paradigm for the conduct of future studies to understand the causes of this disorder; and facilitate the rapid communication of clinically relevant scientific findings to the broader community.”

I note that many of the parent advocacy groups like NAA and Safe Minds are openly critical of the paper and wonder which advocacy groups did you consult? I am a  member of the Autism Hub, a community of bloggers that broadly welcomes the results of this study. We include parent advocates, professionals and autistic people. We support evidence based medicine and uphold the values of scientific enquiry. We oppose the pseudoscience and quackery that infests many of the parent advocacy groups. There is no compelling evidence for an autism epidemic, vaccine induced or otherwise. There is no evidence for the efficacy of the biomedical “cures” being touted to parents groups.
 
We are trying to get the research community to understand that these people - TACA, NAA, Generation Rescue, Safe Minds etc. do not represent the views of most parents. Celebrity endorsement from people like Jenny McCarthy has helped to give them a disproportionate presence in the media that belies their actual importance. To this end some of our members recently took part in a panel discussion at the University of San Diego and I am presenting a poster on our activities at the upcoming International Conference in London organized by the National Autistic Society. We would welcome a dialogue with the research community that helps to place the needs expressed by autistic people and their supporters at the heart of the research agenda.

The Autism Hub is not really an organization. We are more like the expression of an idea. I suspect that our greatest strength, our diversity, is also potentially our greatest stumbling block when it comes to building an organization. But there is a need for organizations that embody the principles of the Autism Hub, if only to give the lie to the claims of the anti-vaccine parents that they represent the autism community. They are invited to sit on the Interagency Autism Coordinating Committee. They are consulted about the the design of academic studies. They have ready access to the media. This is not because they are popular. They do not enjoy mass support. After all no more than 2000 people attended their Green Our Vaccines Rally in Washington. The latest figures confirm that less than one per cent of US children are unvaccinated. But they are organized. 

I know that there is a tradition of self organization within autism. The Autistic Self Advocacy Network and Autism Network International are prime examples. The only drawback with such organizations is that it is hard for them to organize children. And while I may be convinced that the best advocates for autistic children are autistic adults our present culture does privilege parents in this respect.

The anti-vaccine parents are vocal and committed. They have no qualms about claiming to represent the autism community. But autism hub  parents are constrained from challenging them because we would feel uneasy about claiming to represent “our children” if it meant disenfranchising all the autistic adults who would much rather speak for themselves, thank you very much.

The answer is to build an organization of parents and autistics. It may not be easy. Parents and adults do have differing agendas. Potential sources of disagreement include questions like:

• Is autism a disability or a difference? Can it be both?
• Is our agenda the same for all autistics regardless of their potential for independent living?
• Autistic adults need accommodations more than interventions. But is the same true for children?

I think  we need an Alliance for Autism that reflects our diversity. It would work like this.

1. We should not try to resolve all our differences in advance and create a perfect organization with no internal conflicts.
   • Otherwise we would be forever involved in meetings about meetings and looking deep into theoretical discussions. Meanwhile nothing happens. 
2. We should not ignore our differences and pretend we are all united by tacitly sweeping all our differences under the carpet.
   • This would just lead to us adopting meaningless forms of words that tried to paper over the cracks in our campaign. I am sure that McCain and Obama will provide us with plenty of examples of this in the months ahead!
3. We should be able to acknowledge our differences and agree to disagree on any number of issues providing we can come together on those issues that do unite us.
   • As an old time socialist my favourite analogy is the picket line.  There can be all sorts of debates and disagreements expressed until the strike breakers make an appearance. Then you suspend your debate and link arms to see off the threat.

I would like to see an organization develop along these lines to counter the influence of “the usual suspects” in Safe Minds, NAA et al. and get our voices heard in the media and at the conference table. How about it?

POSTSCRIPT

Prior to posting this I consulted with friends in the autism community. They raised some important concerns which I hope I have accurately summarized thus and I append my responses thus. (NB I a not reprinting email exchanges on my blog. I am reporting on what I took away from these discussions and how they have influenced my thinking.) 

Do we really need another parent founded, parent led organization. Shouldn’t we be allying with and empowering existing organizations like the Autistic Self Advocacy Network which are founded and led by autistic persons?

The reason why I am proposing the alliance, as opposed to developing an existing organization like ASAN goes back to my experience as an anti-racist activist in the 1970s when we were concerned about the growth of the far right in the UK.There were anti-racist  and anti fascist groups out there but none of us had mass appeal and just bringing us together was difficult because of all the ideological baggage different groups brought to the table.

The solution was the Anti Nazi League. We came together around a single aim - to expose the far right as the Hitler loving nazis they really were. We did not ditch our ideological differences. We did agree that they were not relevant at that moment in time to the specific task of the ANL. The result was a broadbased movement that went far beyond the collective reach and appeal of the original activists who set it up.

Translating that to today and building an alliance for autism I would want it to be able to attract and speak for parents who want evidence based therapies for their children and may even believe they want a cure but are horrified at the anti-science, anti-vaccine stance of McJenny & Coy. and the untested “cures” they inflict upon their children.

Such an alliance need not be parent led but I think it needs to be parent focused. Existing advocacy organizations like ASAN may well prove to be the organizational force behind the alliance. But the aim would be to bring parents on board in a form that governments can recognize and incorporate in structures like IACC at the expense of the existing “autism parent/advocacy community” who are hogging the limelight right now.

An anti anti-vacine organization may be necessary but it is not the same as an Alliance for Autism. A real alliance for autism is defined by what it supports, not by what it opposes.

I agree. To continue with my analogy from my days in the ANL, we were fortunate that a parallel organization - Rock Against Racism - arose at around the same time. They emphasized the black origins of most popular music and organized concerts and music festivals under the positive banner of “Love Music Hate Racism.”  Both organizations enjoyed a symbiotic relationship for a crucial time when they supported each other and both were strengthened.

Translating this experience to the autism community I suggest that we build the bits we need and then see how they fit together. Some people will be building the ”anti” bits. Others will be building the positive bits. and we will find an accommodation with each other.

The vaccine issue is a blip of no lasting importance. The real battle will centre upon the myth of “normalization” to make autistic people “indistinguishable from their peers” and the potential for eugenic “solutions” to autism implicit in the current search for genetic markers for autism.

Again, I agree. But right now this”blip” looms large on the horizon and children are suffering as a direct consequence. We have to take it out. In doing so our natural allies are in the scientific community. I agree that long term, the really important argument will be between us and the scientific community about concepts of disease, disorder and the social model of disability. That is one reason why I have sought and gained appointment to the lay consultative panel of the Human Genetics Commission which exercises ethical oversight of the general trends in genetic research in the UK.

We should be positive about autism. Parents are excited by the ideas of neurodiversity. But such an alliance has to be led by autistics.

Yes, absolutely! But we have to acknowledge that most parents do not begin by feeling positive about autism and  excited by neurodiversity. Most parents begin by being wide open to anyone who promises a cure.

And those parents who do learn to accept autism and make the best of it do not see themselves primarily as supporters of self advocacy for autistic individuals. They see themselves as central to advocating for their children and look, in the first instance, for allies amongst similar parents. They take a long time to realise that their children are going to become adults with autism. I use that form of words deliberately instead of autistic adults because I see this phenomenon with parents of all sorts of children, autistic and otherwise at my school. The key point is that, more than most parents, the parents of any child with a disability are inclined to see their child as first and foremost a child, and resist the idea that they will be an adult one day. Once they accept the inevitablity of their offspring leaving the nest they become more open to ideas about self advocacy and human rights issues for disabled adults.
 
In other words parents do not automatically see themselves as being on the same side as autistic adults. They are totally committed on the side of their children. If we suggest that they sign up as parent auxiliaries in support of a generic autistic rights movement  this will strike them as patronizing. I think that mutuality rather than auxiliarity (is that a word?) best captures my understanding of the way forward.
 
The bottom line is that parents have legally enforcable rights and responsibilities in relation to their children. The fact that some parents abuse their rights and ignore their responsibilities should not detract from my basic premise that parents are de facto the primary advocates for their children. Hence we need an alliance in which neither parents nor autistic adults are subordinate or auxiliary to each other.

This is where I am at the moment. It could be that I am wrong. But I think a public debate about where we go from here is the best way forward. I know that clown blogs and hate blogs will mock us.But what else is new? We are a vast community and they are a pimple on the arsehole of humanity. It is time for us to set our own agenda and use our best endeavours to make it so.

September 10th, 2008 Posted by Mike | Autism rights, Neurodiversity, autism acceptance, autism advocacy, autism parents, disability rights, parents, science | 29 comments

The case of Ben Haslam

Channel 4 News carried a worrying story on Monday, 14 July. While I would not go as far as my good friend Kev in describing it as evidence of fascism, it does raise serious questions about parental rights and the use of the law to decide issues of child welfare. The story concerns an autistic boy, Ben Haslam, who was making good progress at The Shires. I say “was” advisedly because Bedfordshire County Council, who were funding his 52 week a year placement, were due to cease payment at the end of the week. This was the result of a high court ruling which upheld Bedfordshire’s appeal against the decision by a Special Educational Needs and DISability Tribunal, aka SENDIST, that had upheld a previous appeal by Ben’s parents against Bedfordshire’s refusal to fund Ben’s place at The Shires.

From the news report it is obvious that Ben, who has severe learning difficulties and no spoken language has benefitted from his residential school placement. He used to constantly demand food and was clinically obese. He was incontinent. He was violent. He was self injuring and very unhappy. After 5 months at The Shires he has lost weight, is almost toilet trained and is a lot happier. As his mother says,

“It’s a pleasure to have him around. It really is a pleasure”

But happiness has a price. In Ben’s case it was £250,000 in annual school fees. This was too much for Bedfordshire who argued that they could meet Ben’s needs for less than half the price, £120,000 to be precise. It was not clear from the report whether or not they had included his need to be happy in their calculations.

Ben’s parents clearly do care about Ben’s happiness. It cost them £43,000, their life savings, to gather the evidence to support their case and hire expert legal representation to win their appeal. Now, after losing in the High Court, they face additional  bills for costs, including those of the local authority, of around £20,000.

Bedfordshire propose to educate Ben in a local authority special school and house him in a local children’s care home. Neither the school nor the care home are autism specific. If we consider Ben’s problems prior to going to The Shires, his previous local authority special school, which is now closed, did not exactly cover itself in glory. This is no disrespect to local authority special schools. I teach in one. But I remember two pupils with whom we struggled, who went on to make excellent progress at residential schools. I can think of others I have taught who would have benefitted from the 24 hour curriculum that specialist, residential schools can offer. There is no way that you can replicate 52 week total provision by talking a child into care and bussing them to a local authority special school for 40 weeks a year.

Bedfordshire claim that Ben’s case, like every other, is

“considered individually and according to a child’s specific needs.”

If true this marks a dramatic change from their position of 3 years ago when Bedfordshire were the subject of criticism from government because they were writing generic statements of educational need and leaving it up to schools to decide on provision instead of specifying what provision to make. In the view of the government minister, if this were general policy, Bedfordshire

“will not be complying with its statutory duty and determining the special educational provision in other cases, perhaps the majority of cases.”

So have Bedfordshire put their house in order? Can the Haslams place Ben in local authority care with any degree of confidence? It might help if Bedfordshire agreed to waive costs and remove at least one financial burden from Ben’s family. After all they did tell Channel 4 News that the relevant section of the law (section 20 of the Children’s Act)

“promotes partnership in meeting a child’s needs.” 

It strikes me that this is a very strange partnership if it is based on adversarial law and the parents are left making all the concessions and picking up the  bill for both sides of the legal proceedings. and the Haslam’s are not a unique case. The BBC disability forum, OUCH!, provoked some interesting comments on Ben’s case.

Take this from a Bedfordshire employee who knows Ben.

I work within Children with Disabilities in Bedfordshire, and have previously worked with Ben. To see the change in him is incredible, and shows that residential schools do offer the best facilities for children with severe autism as they provide a high level of care, knowledge, structure and consistency.

Or this:

Bosscat, you are absolutely right there is no effective provision for severe autism in Bedfordshire. Local provision is based on resources and not the needs of the children and for far too long Bedfordshire has been getting away with funding the cheapest option, which generally means inadequate and substandard provision for our most vulnerable of children. Children with severe autism need access to specialist support for their severe and complex needs; they need extended support beyond the school day, more than this authority can reasonably give.

Or this from a parent in Bedfordshire:

The day-school system is failing children with severe autism in Bedfordshire and lack of resources within the county means that many severely disabled children are being denied access to programmes, treatments and therapies that could significantly improve their quality of life - Ben’s transformation is an example of what can be achieved.

I am one of many parents who have no confidence or trust in Beds children Services. In Ben’s case (and countless others) they have demonstrated a complete lack of understanding and empathy, their sole purpose is to cause misery and despair for those children and their families who are made vulnerable by severe disability and an uncaring authority. It is my sincere hope that those officers responsible for this appalling situation are sacked or at the very least not employed by the new unitary authority that comes into effect next year, anyone who supports them is not fit to hold public office.

The £250,000 cost of care at The Shires School is an average figure when compared with other independent residential special schools offering the same level of support and care. This begs the question of how Bedfordshire can provide the same level of support and care for £120,000? The simple and short answer is that it can’t. It doesn’t help to open the local paper and see that the local authority is spending thousands of pounds on hiring conference rooms, is this really what public service is about?

Apart from the inadequacy of the provision, Ben’s case raises important questions of law. As the Haslam family barrister, John Friel makes clear,

“Either we have  a voluntary system or we impose it. If you impose it one would normally go through family court proceedings. So, as this is the first situation in which this has arisen … I think this is objectionable, both morally and politically.”

John Friel’s point is that children are usually taken into care either because the parents are failing their child or because they voluntarily opt for local authority care as being in the best interest of their child. In this case the Haslams are clearly not bad parents. And they are not being offered a choice. They are being coerced into placing Ben into care. The Family Court has not decided that Ben would be better off in care. In fact the Family Court has not even been involved. According to Bedfordshire, the SENDIST tribunal upheld the Haslam’s appeal “on a technicality.” So, presumably, the High Court overturned the SENDIST decision on a similar “technicality.”  This whole case has been  decided, not with reference to Ben’s best interests, but with reference to arcane interpretations of the workings of English case law.

I agree with John Friel. This is morally and politically objectionable.

EDIT:

I have just carried out a brief edit to remove some garbled code that came with the cut and paste comments from the BBC website and made it look as if I am a Bedfordshire parent. I am not. But my experience in Cumbria and that of many other parents I have met in the course of my NAS activities suggests that Bedfordshire is not the only authority that tries to shoehorn children into existing resources rather than tailoring resources to meet individual needs.

I am familiar with the argument that council budgets are already under a lot of pressure and they have to make best use of resources. But wasting resources on inadequate provision and pretending it is in the best interests of the child is both a false economy and a falsehood perpetrated on families who struggle with disability and the taxpayers who have to foot the bill.

And, as Kristina has noted in her blog on this subject, parents in the USA face similar conflicts. Sharon has blogged this as well and Madeline provides an interesting link to a story by Sarah Spiller, the reporter in the Ben Haslam story. She is an autism parent herself and had to battle through the courts to get proper provision for her child. And so it goes on.

July 20th, 2008 Posted by Mike | Autism, autism parents, education, government, parents, politics | 4 comments

Green Our Vaccines - update

The Green Our Vaccines Rally in Washington went off as expected. According to journalist and Vaccine author, Arthur Allen there were around 1500 in attendance. This news channel said there were hundreds but I watched the whole march go past on a traffic cam and estimated no more than 2000 so I will go with Arthur’s figure. Do the numbers matter? I think so.  The autism-vaccine connection has been espoused for at least 10 years now. There are around 5000 cases in the Autism Omnibus Proceeedings. Over half of these were filed in a single year (2003) and since then numbers have dropped steadily.

Table of petitions filed is taken from The National Vaccine Injury Compensation Program Statistics Reports

This shows that there was a very brief flurry in which thousands of parents signed up to the view that their child’s autism was vaccine related followed by a sharp decline. I find this table interesting for two reasons.

First, if either the increasing burden of vaccines themselves or the increasing burden of ethyl mercury in the thiomersal containing vaccines (TCVs) was behind the increase in autism prevalence that was recorded throughout the 1990s it is not apparent in the number of petitions filed for compensation. Whatever the reason for the increase in prevalence parents at the time did not connect their child’s autism to vaccines.

Second, once the idea of an autism epidemic was mooted and vaccine damage was posited as a possible cause, lots of autism parents looked back and said, “Maybe.” And a significant few said, “Definitely,” and took action. Hence the bulge in the statistics for vaccine damage claims.

At the same time scientists carried out studies and found no connection between vaccines and autism. Consequently very few additional parents have jumped onto the vaccine-autism bandwagon. So we have a highly motivated group of parents, brought together by  circumstances at a given moment in time, who now feel marginalized. They are convinced that they are right and equally convinced that they are victims of a conspiracy to deny them justice.

This is why the numbers are significant. A growing campaign, fuelled by new recruits would have attracted a far bigger crowd than the one seen in Washington this Wednesday. What we saw instead was a rump of increasingly embattled activists who sustain each other via a shared mythology. The more they are challenged the closer they cling together.  They comfort themselves with the thought that science is on their side. But in reality they can only maintain their world view by their denial of science. 

June 6th, 2008 Posted by Mike | Autism, Quackery, autism epidemic, parents, science | 3 comments

Petition the UK Government for Autism

Barbara Wilson, the National Autistic Society Regional Councillor for the South West has had a petition to the Prime Minister accepted by the office of the Prime Minister. UK citiizens can sign the petition on the Prime Minister’s website

The petition reads:

    We the undersigned petition the Prime Minister to make it
    compulsory for Local Authorities, NHS and Social Care to work
    together to produce a strategy with guidelines for Autism /
    Asperger syndrome  including diagnosis, pathways to services
    and criteria that are realistic and address supportive and
    lifelong support,rather than waiting for people to fall into
    crisis before services respond.  Also to create a national data
    base of the numbers of people diagnosed as being on the ASD
    spectrum.

    for people on the Autism/Asperger Spectrum specifically to
    address the issues on Fair Access to Care and support that many
    consequently fall through the services. Also adopting a clear
    pathway to services for adults on the spectrum who currently
    are referred to as ‘high functioning’ rather than awaiting
    their move into ‘crisis’ To include more preventative and
    supportive approach. We need to have a national data base on
    the numbers of people affected.  Currently services are only
    estimating numbers consequently do not see the need for
    strategies and specific services.

I am sure this petition will strike a chord with many people in the UK and chime with the experience of autistic people and their families around the world. In the UK we have plenty of good practise guidelines for health, education and social care but very little effort on the part of government to mandate these guidelines or provide adequate funding. Sometimes these guidelines come together and are implemented in the provision of children’s services. Even so,

• Over 50% of children are not in the kind of school their parents believe would best support them.

• 66% of parents said their choice of school was limited by a lack of appropriate placements for children with autism in their local area.

• Only 30% of parents of children in mainstream education are satisfied with the level of understanding of autism
  across the school.

• In mainstream schools only 27% of parents say that all their child’s teachers could adjust their approach and
  teaching materials - and therefore meet their legal duties under the SEN and Disability Act (2001).

• Special Educational Needs Co-ordinators (SENCOs) are responsible for co-ordinating provision for children with
  autism in schools, yet 23% of parents are dissatisfied with SENCOs’ level of understanding of autism.

• Over 40% of children with autism have been bullied at school.

• 45% of parents say it took over a year for their child to receive any support. 

• There are more appeals to the Special Educational Needs (SEN) and Disability Tribunal in England about
  autism than any other type of SEN. 79% of parents who appealed to the Tribunal in this survey won their case. 

• Parents say the biggest gap in provision is social skills programmes. 

• 1 in 5 children with autism has been excluded from school, and 67% of these have been excluded more than once.

• Only 53% of young people aged 14 to 19 years have transition plans, falling to just 34% of students in mainstream schools.

Source: Make Schools Makes Sense Autism and education: the reality for families today. (NAS 2006)

The Makes Schools Make Sense Campaign did make a difference. The government has responded to our concerns and made a number of commitments designed to improve education for autistic children in England. That still leaves the rest of the United Kingdom. But it is a start.

If the situation for children is bad, then for adults it is dire. This year, the Think Differently About Autism Campaign is focusing on adults under the slogan “I exist” Its main points are that,

• Nearly two thirds (63%) of adults with autism do not have enough support to meet their needs.

• 92% of parents are worried about their son or daughter’s future when they are no longer able to care for them.

• 61% of adults with autism rely on their family financially and 40% live with their parents.

• 60% of parents believed that a lack of support has led to higher support needs later on.

• At least 1 in 3 adults with autism are experiencing severe mental health difficulties due to a lack of support.

 Source: I Exist. The message from adults with autism in England (NAS 2008)

Barbara’s petition can only help to focus attention on these problems. Autistic people and their families, along with autism professionals and advocacy organizations spend a lot of time arguing about important issues like causation, cure and the various interventions that are supposed to help autistic people fit in with society. But while we may disagree on how to assist autistic people in coping with society, we should all agree to support Barbara’s petition and campaign to make society better able to understand and cope with autism. 

NB. Throughout this blog post I refer to England and link to materials pertaining to NAS campaigns in England. This is a consequence of the different forms of government that pertain throughout the United Kingdom and the way these differences impact upon the provision of services. There are parallel campaigns in Scotland, Northern Ireland and Wales that take account of these differences.

April 23rd, 2008 Posted by Mike | Autism rights, National Autistic Society, adults, autism advocacy, disability rights, education, government, parents | 4 comments

Melanie Phillips is wrong again.

“The Wakefield Witchhunt” - Melanie Phillips - The Spectator - Friday, 21st March 2008

A couple of days ago, yet another story appeared claiming that fresh research had shown that there was no link between the MMR vaccination and autism. This new research was said to have shown that, contrary to the claims made by Dr Andrew Wakefield, the surgeon at the centre of the MMR scare, there was no relationship between gut problems and autism, the core of his concerns. It also claimed that the discovery furthermore damaged the related theory that a gluten-free diet could help children with autism.

This must be a first, even when judged by the standards of accuracy previously set by newspaper columnist, Melanie Phillips. Every statement of fact in her opening paragraph is wrong! The ”fresh research” makes no mention of MMR apart from acknowledging a potential conflict of interest because one of the authors, John March “has previously acted as an expert witness for the litigants in the MMR litigation case conducted by Alexander Harris against three MMR vaccine manufacturers, which involved urinary analysis of both litigants and non-litigant controls using MALDI-TOF mass spectrometry. He has an autistic child who was not part of this legal case.”

The next sentence is very telling, “was said to have shown that…” Was said by whom? Has Ms Phillips actually read the research in question or is she relying on her feed from LexisNexis? If she had read the research paper she would know that it makes no claims regarding the purported link between gut issues and autism. Neither does it question the efficacy of the gluten and casein free diet. The authors are careful not to dismiss the diet. Instead they call for more research into it. NHS Choices gets it right.

Despite the newspaper headlines and coverage, the study did not look at the effects of the MMR jab and autism. Instead, it tested and compared the urine of autistic boys with the urine of boys without autism. The researchers conclude that there were no differences between the levels of peptides in the groups and say they have effectively disproved the ’leaky gut theory‘. However, further research is needed to establish whether a casein and gluten-free diet has other effects on autism.The researchers call for more studies into special diet as a treatment for autism, but they do not suggest that their research has any implication for the discredited MMR vaccine/autism theory.

Ms Phillips is on firmer ground when quoting directly from the press release

“Dr Hilary Cass, from Great Ormond Street, said: ‘It is very distressing to have a diagnosis of autism, a lifelong condition. Many families are driven to try out interventions which currently have no scientific basis. For example, advocates of the leaky gut hypothesis offer children a casein and gluten-free diet which as yet lacks an evidence base.’

But then she puts her foot in it by adding her own commentary 

This particular observation is a telling indication that this study bears little relation to reality. For there are countless families whose autistic children’s suffering from gut problems has only been eased, and their autistic symptoms improved, by the introduction of precisely such a diet. ‘No evidence base’? Tell that to those families. It is their lived experience.

All together now, for the benefit of Ms Phillips: The plural of anecdote is not data! Testimonials from parents need to be backed up by solid data from properly conducted research. We are awaiting the outcome of a couple of studies that may provide that evidence base.

Second, despite the way this was presented in the media this is not a new piece of research at all. It is instead a recycled version of a study by Baird G. et al, published in the Archive of Diseases in Childhood on February 5 and reported in the press around that time.

Oh dear! Where on earth did she get that idea? Baird G. et al did take advantage of an earlier study [Baird G, Simonoff E, Pickles A, et al. "Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP)" Lancet 2006; 368:210–15.] for their study of “Measles vaccination and antibody response in autism spectrum disorders.” But this has nothing to do with Dr Cass.

Dr Cass recruited children “from two tertiary referral centres specialising in autistic spectrum disorders whilst controls were recruited from and mainstream primary and secondary schools in the same geographical area. 65 boys with autism mean age 7:4 years (5-11) and 158 control boys mean age 7:8 years (4:2-11)”

Dr Baird used “A community sample of vaccinated children aged 10–12 years in the UK with ASD (n=98) and two control groups of similar age, one with special educational needs but no ASD (n=52) and one typically developing group (n=90), were tested for measles virus and antibody response to measles in the serum.”

So Dr Cass “recycled” this study using different researchers, different children, different research aims and methods, and different funding bodies. The two studies are totally unrelated. Nevertheless Ms Phillips goes on to cite Wakefield’s response to Baird et al and a letter by John Stone in response to Baird et al as if they apply to Cass et al! Not that this mattters to Ms Phillips. Nowhere does she discuss the content of either Baird’s or Cass’s research or evaluate the hefty quotations from Wakefield and Stone. (They total 1100 words in an article of 2000 words. I wonder if she is paid per column inch.) No. This is just another way to reiterate the myth of the martyrdom of Andrew Wakefield at the GMC.

 No stone is being left unturned by the medico-political establishment and its creatures in the media to ensure that this doctor is destroyed.

Ms Phillips, like David Kirby, has pretensions of impartiality.

As I have repeatedly said, I have no idea whether Wakefield is correct or not in his concerns about the possible adverse effects of the MMR vaccine on a small sub-set of vaccinated children. Nor do I know whether any of the charges being levelled against him at the GMC has any legs. But I do believe — as I wrote in my series of articles on the subject for the Daily Mail in 2003 here, here and here — that many of the statements made by the Department of Health and medical establishment about the ‘proof’ of the vaccine’s unchallengeable safety are deeply misleading.

Wow! She has no idea about MMR and autism. She has no opinion on Wakefield’s culpability. But she does have an opinion on the stated opinions of the Department of Health and the medical establishment on these very matters. Furthermore, her opinion of the opinions of others on matters on which she has no opinion is the same opinion she had 5 years ago and we can read it “here, here and here.” Meanwhile, back to the present and a few more gems from Ms Phillips.

No-one has ever suggested that the MMR vaccine causes all or most of the incidence of autism. If Wakefield is correct, it is only a small proportion of children whose immune systems may be unable to cope, for whatever reason, which makes them particularly vulnerable to such ill-effects.

No-one? How about the  presenter of “Origins of the Autism Epidemic,” Andrew Wakefield. And how small is a small proportion? Researchers like Cass and Baird provide us with data. According to Wakefield:

“We have over the last 10 years evaluated several thousand children on the autistic spectrum who have significant gastrointestinal symptoms. Upper and lower endoscopy and surgical histology have identified mucosal inflammation in excess of 80% of these children.”

“Several thousand children?” We know he had examined 12 children by 1998 There were around 1300 children in the UK class action against MMR that failed.  Perhaps he examined them all. Then Wakefield went to work for Jeff Bradstreet, an exorcist in Florida before setting up Thoughtful House in 2005 where Arthur Krigsman scopes every child that walks through the door. If we average it out and say 2 children a day every day, not counting weekends and holidays for 10 years that gives us around 5000 kids with and endoscopic investigation and 4000 turned up positive for enterocolitis and autism. Yeah, whatever. Perhaps Wakefield will publish his data one day and end all the guesswork.

And contrary to the message being pumped out by the medical establishment that the vaccine has been proved to be safe — by studies which are all either flawed, inadequate or irrelevant — the fairest and most accurate thing to say is that the jury is still out.

Vaccines will never be “proved safe” if by this you mean that they will be absolved of all risk. But they are safer than the diseases they protect against. How about it Ms Phillips? Would you like polio or the polio vaccine?

One of the most reprehensible weapons being wielded in the witch-hunt against Wakefield is the claim that anyone who gives any credence whatever to his concerns is responsible for the incidence of measles amongst children whose parents are as a result too frightened to give them the MMR vaccination. There are two obvious points to make in response to this piece of moral blackmail: 1) the whole panic could have been avoided by offering single measles, mumps and rubella jabs rather than the triple MMR, and 2) it is surely just as important as avoiding cases of measles mumps and rubella to avoid causing the kind of catastrophic damage to the brain and gut displayed by the children at the heart of this controversy.

Wrong again! Offering single vaccines is tantamount to admitting that MMR is dangerous. It would have destroyed public confidence in the whole vaccine schedule and take up of the three shots would have been significantly less than the triple shot, always assuming we could source three separate vaccines that had been adequately tested for safety. And regarding point 2), hang on! How do you know that single vaccines would avoid this “kind of catastrophic damage” unless you already had an opinion about the effects of the MMR? Remember? The opinion that Ms Phillips claims not to have?

And there is a further and quite appalling point to note. This whole saga started because parents of such children found that their family doctors were dismissing out of hand their children’s gut and brain problems, accordingly refusing to alleviate their suffering. Now, as a direct result of the animosity towards Wakefield that has been whipped up — and the fear that any doctor who suggests he might be right will similarly find him or herself at the receiving end of the medical establishment’s fist — children exhibiting this combination of gut and brain damage are finding it difficult to obtain treatment.

Yes! Because quacks like Wakefield and their silly media acolytes have made it next to impossible for a doctor to diagnose and treat GI disorders in autistic children without being tarred with the same brush! Thank you Dr. Wakefield. Thank you Ms Phillips.

As the resumption of the GMC hearing draws nearer, one has to ask whether this will serve the cause of truth and justice and the relief of suffering — or is it instead merely a show trial which will bring about the precise opposite?

I hope that Wakefield is severely chastised and that we can move on to addressing the real needs of autistic children and adults free from the need to constantly address spurious scare stories about vaccines.

Melanie Phillips writes for the Spectator. It’s editor used to be Boris Johnson, who masked his intellectual prowess with the appearance of dimwitted buffoonery. Ms Phillips is just the opposite.

March 23rd, 2008 Posted by Mike | Andrew Wakefield, Autism, MMR, journalism, parents, politics, vaccines | 14 comments

Autism in China

The Wall Street Journal has published a very informative article about Autism in China. As in many Asian societies, attitudes to disability are mixed. Having a disabled child is seen by some as a sign that a couple have not led a virtuous life. This is reflected in official government policies which give low priority to resourcing services and provision for all disabilities. Hidden disabilities like autism are especially disadvantaged.

The response from parents has been to do it themselves. The article features a Ms. Ma who has given up a comfortable middle class existence, selling her apartment and using all of the family’s savings in an effort to provide a school for her autistic daughter. She is now embarking on a project to establish an adult community so there is somewhere for her daughter to go when she is dead.

This story is both illuminating and inspiring. It serves to illustrate the fact the autism is perceived differently and treated differently depending on the societal framework in which it is placed. These cultural differences form part of the subject of Richard Roy Grinker’s excellent book, Unstrange Minds, which was probably the best autism book I read in 2007. 

January 10th, 2008 Posted by Mike | Autism, parents | 4 comments

Communication, Respect and Autism

 Thoughtful Debate

The latest issue of Communication, the quarterly members magazine of the National Autistic Society continues to provide provocative and thoughtful contributions to the debates that feature so often in the autism movement.

We have Pat Howlin on the question of whether we need to differentiate between the condition of being autistic, which requires respect and understanding, and autistic spectrum disorders which require interventions. And she argues that these are not mutually exclusive categories. Lorna Wing discusses the need for a well thought out ethical framework within which genetic research can be conducted. Given that genetic research into causes and possible cures is going to continue anyway she wants it to happen within an ethical framework that respects the human rights of autistic people.

There are also features on siblings, home education and the experience of classroom assistants supporting autistic pupils in the mainstream.

Larry Arnold writes about his experience as the first ever autistic person to be elected to the NAS board of trustees. He writes about the need for the NAS to continue “to be an organization for the entire spectrum of autism” and reminds us that “newer organizations formed under the umbrella of neurodiversity and ‘aspie freedom’ … also need to be inclusive and work to include people who are not as intellectually advanced as they are.” And , as if to underline the point, there is also a feature on challenging behaviours. These are by no means the exclusive domain of so called ‘low functioning’ autistics. But for many families they define the experience of autism and seem to mark their children as different from the higher functioning autistics whose concern for acceptance and understanding is sometimes mistaken as indifference to the real suffering that can come with autism. This takes us back to Pat Howlin’s article on reframing our attitude both to autism and to autistic people. All in all a very stimulating issue which will provide me with plenty of material for future blog posts.

This shows that a national autism charity can make a serious attempt to embrace diversity and continue to address the problems that arise across the autistic spectrum. It will not always be plain sailing. With such a diverse constituency there are bound to be times when some groups will feel neglected or misrepresented. The current “Think Differently” campaign created a small storm amongst some parents that received extensive coverage in the Independent.

Some autistic adults were also put out when the same campaign referred to the “devastating effect on individuals and families” if the right support was not forthcoming. They feel that most people will miss the subtle distinction between this and the routine references to autism as “this devastating condition” by the epidemic mongers.  

Thoughtless and debasing

What is certain is that nobody could miss the subtle message of this ad campaign, because there is none. Having just watched The Golden Compass I am reminded of the Gobblers who kidnap children in order to steal their souls.

This is not the latest offerng from Safe Minds or Generation Rescue. This is the New York University Child Care Center. And they do a similar job on ADHD, Asperger Syndrome and Bulimia. Whose Planet is it Anyway? and Autism Vox have both written thoughtful blogs about this campaign. The NAS takes respect for autistic people as its starting point. It will make mistakes. But it is unlikely to stoop to the level of misinformation and abuse that is apparently acceptable to New York University.

December 7th, 2007 Posted by Mike | Autism, Communication, National Autistic Society, Neurodiversity, aspergers, parents | 8 comments