Action For Autism

Don’t Write Me Off

This is the slogan of the latest campaign from the National Autistic Society. It launched today at  a reception in Parliament where over100 MPs heard NAS Council member Thomas Madar talk about his experience as an autistic adult and saw the latest campaign video.

The campaign  addresses the lack of support adults with autism face when looking for a job or trying to access benefits. New NAS research has revealed that, of the adults with autism we surveyed:

· One third are currently without a job or access to benefits

· Over half have spent time with neither a job nor access to benefits, some for over ten years

· Just 15% have a full-time job

· 79% of those on Incapacity Benefit want to work

· 82% who have applied for benefits say that they needed support to apply.

As with previous campaigns these statistics will be brought to life with the personal stories of adults and parents directly affected by these issues. For news, resources and to take part in the campaign  visit the campaign website

October 13th, 2009 Posted by Mike | National Autistic Society, adults, autism advocacy, campaigns | 15 comments

Autism 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

Nothing About Us Without Us

Nothing About Us Without Us 

This familiar slogan from the disability rights movement is being raised increasingly by autistic rights activists.  Autistic people have a history of self-organization in groups like Autism Network International (ANI), Autistic Self Advocacy Network(ASAN), and more recently the London Autism Rights Movement.  While the Internet has made it easier for individuals to connect both locally and on a wider scale autistic people also come together in the physical world. Autreat has seen a regular gathering of autistic people and their allies since it was launched by ANI in 1996 and, for those unable to make the trip to America, a group of autistic people based in the UK launched Autscape in 2005. Alongside these annual events there are numerous local groupings with activities ranging from social gatherings to serious campaigning.

When you combine physical presence with a wired community the results can be impressive.  Two years ago the NYU Child Study Centre launched the now infamous “Ransom Notes” poster campaign. It promoted the idea that autism along with other neurological disorders was kidnapping our children. Bloggers responded with outrage. ASAN stepped in to coordinate the protests. 22 disability organizations from around the world joined the protest and NYU dropped the campaign.

Earlier this year Action for Children ran a TV advertising campaign that presented autism as a monster that trapped children. The blogosphere was again quick to respond. A parent launched a Face Book campaign which soon attracted a thousand followers, one of whom enlisted the support of Tony Attwood, and organized complaints to the Advertising Standards Council. Action for Children stood by their campaign, which nevertheless ended a week ahead of schedule.

Mention of Tony Attwood reminds me that he is at present on the receiving end of a campaign by ASAN who have launched an online petition to express their opposition to his continuing association with Families of Adults Affected by Asperger’s Syndrome (FAAAS) which has moderated its name (it used to be known as Families of Adults Afflicted with Asperger’s Syndrome) if not its stance that wives and children are the victims of men who use their Asperger Syndrome as an excuse for unreasonable behaviour towards their families. 

In this case I am not so certain that public protest is the way forward. It is one thing to use the politics of protest to confront high profile images and messages that damage the public perception of the autistic community. It is quite another to demand that someone change their mind based on public opinion. That requires debate and discussion. I agree with ASAN that Tony Attwood ought to disassociate himself from FAAAS and their use of his name on their website. How we go about it is a question of tactics not principles 

This brings me to my final point. How can autistic self advocates position themselves to influence decisions before they are taken instead of having to protest about the consequences of those decisions taken without them? And, bearing in mind the well documented difficulties that autistic people have navigating the nuanced world of social communication, what can we do to help them? Maybe it is they who can help us. Autistic plain speaking could cut through the doublespeak that bedevils the political process.

In the USA the Inter-Agency Autism Coordinating Committee (IACC) that advises federal agencies like the National Institutes for Health (NIH) on priorities for autism research invited members of ASAN onto the committee and took account of their representations. ASAN have also had meetings with the relevant advisors in President Obama’s policy teams.

Things are happening in the UK as well. Parliamentary support for the Autism Bill led to the government setting up an external reference group chaired by National Autistic Society (NAS) chief executive, Mark Lever. The vice chair was autistic adult, Anya Ustaszewski. The input of the autistic adults on the group has helped to shape the public consultation launched by the government that will lead to statutory guidance for local authorities on meeting the needs of adults on the spectrum.

The NAS has come a long way in transforming itself from a parent led group to one that takes autistic adults seriously. A number have been elected to the NAS Council and one serves as a member of the board of trustees. But there is still a lot to do. Even quite able autistic adults can be excluded because they cannot cope with big meetings or face to face negotiations in committees. For others, their difficulties with communication make it hard for them to get their message across. And those with additional learning difficulties are even more disadvantaged. 

The good thing is that autistic people are demanding to be heard. Governments, along with other public bodies and autism charities have declared a willingness to listen. No doubt there will be future improvements to the wired world that will help the process. But people have to be willing to create those opportunities. We could start by taking seriously the slogan with which I began this article.

Nothing About Us Without Us.

May 10th, 2009 Posted by Mike | adults, autism advocacy, politics | 32 comments

OPEN YOUR EYES TO AUTISM - London Rally

There was a protest march in London on Saturday. I am not talking about the tens of thousands who were protesting over the economic recession in advance of Wednesday’s G20 Summit in London. There was another march that day protesting about autism. I did not attend, but from the photos posted online it looks like a few hundred parents, children and their supporters turned up to march from the Embankment to a rally in Trafalgar Square.
The march was called by Open Your Eyes to Autism, “a parent’s initiative” that has strong links with The Autism File. This is a magazine founded by Polly and Jonathon Tommey to promote biological interventions for autism, especially dietary ones. They were the first parents in the UK to try secretin on their child. I once shared a platform with Jonathon Tommey at a conference for health care professionals. Lisa Blakemore-Brown was also there and spoke about the use of Munchausen’s by Proxy to discredit parents who insisted on biomedical treatments for their autistic children. I felt at the time that both had valid insights, but these were insufficient to support the weight of their arguments.
Still, it made for an interesting conference in which medical professionals, attending as part of their continuing professional development, were exposed to the alternative views promoted by Tommey and Blakemore-Brown alongside more orthodox speakers. My contribution was an early attempt to promote the idea that health care professionals can make a positive contribution to the support of autistic people and their families if they start out by accepting the autistic person instead of trying to cure them. You can read it here.
So I was interested to see that despite its biomedical, anti-vaccine sympathies the march on Saturday also welcomed representatives of the London Autistic Rights Movement, including Hub blogger Casdok who attended with her adult son and a placard that read “Acceptance Not Cure.”
This may be because the march seemed to offer something for everybody. Its flyer called for

Improving services for autistic children and adults.
Recognition of the endemic nature of autism worldwide.
Better educational services.
Valid Research to establish cause.
More support for autistic adults.
More help with the transition from child to adult:
Support for Dietary interventions on the NHS.
Recognition of the role of environmental triggers in ASDs.
And much more…

In this the march resembled its larger counterpart on the day. Both were coalitions who could agree upon some issues and disagree about others. The key questions yet to be answered are, “Should we try to build a coalition in which the points of agreement outweigh the points of disagreement? If the divide is too great can we at least maintain a constructive dialogue while pursuing our distinct agendas?” I am open to suggestions on both questions.

March 30th, 2009 Posted by Mike | autism acceptance, autism advocacy, campaigns, politics | 9 comments

Action for Children reply to critics

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

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

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

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

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

Then I went to “Meet Dan.”

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

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

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

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

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

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

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

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

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

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

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

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

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

Their stock response

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

Genetic test for autism - how close is “close?”

This morning’s Today Progamme on BBC Radio 4 carries a short segment on the possibility of a prenatal test for autism. This was prompted by an article by Professor Simon Baron-Cohen on the BBC website which raised concerns about the possible negative consequences of prenatal testing.

Baron-Cohen is a proponent of the male brain theory of autism. This is based on two key concepts. First, in his book, The Essential Difference, Baron-Cohen puts forward the argument that men tend to be more capable when dealing with objects and relationships between objects. They are systemizers. Women tend to be more capable when dealing with people and relationships between people. They are empathizers. Baron-Cohen proposes that this is the result of differences in the structure and organization of male and female brains that is related to differential exposure to testosterone in the womb.

Secondly, it can be argued that autism is a manifestation of the extreme male brain. This seems to fit the picture of object oriented autistics who struggle with social skills  but are able mathematicians and engineers. Baron-Cohen is open to the idea that this is an inherited genetic tendency. See for example his theory of assortative mating. But he also claims to have found

a link between higher levels of the male hormone testosterone in the amniotic fluid surrounding a foetus and autistic traits when the child was eight.

And animal studies have shown foetal testosterone levels influence brain development, masculinising it.

Baron-Cohen’s theories raise as many questions as they do answers and have attracted both supporters and critics within academia and the autism community. But Baron-Cohen has started this debate, not to promote his theories, but to consider the ethical implications, if they are correct, for future pre-natal testing for autism. What if there is a connection between the genes for autism and the genes for mathematics?

If it was used to ‘prevent’ autism, with doctors advising mothers to consider termination of the pregnancy if their baby tested ‘positive’, what else would be lost in reducing the number of children born with autism? Would we also reduce the number of future great mathematicians, for example?

Of course pre-natal testing need not lead to abortion. We could use drugs to regulate the level of testosterone in the womb. But Baron-Cohen warns

If reducing the testosterone in a foetus helped that baby’s future social development, we would all be delighted. But what if such a treatment reduced that baby’s future ability to attend to details, and to understand systematic information like maths?

Caution is needed before scientists embrace prenatal testing so that we do not inadvertently repeat the history of eugenics or inadvertently ‘cure’ not just autism but the associated talents that are not in need of treatment.

While it would be unfair to judge Baron-Cohen’s position on the evidence of an opinion piece that was written with the express intention of provoking a debate, this article did set a few alarm bells ringing, if only because it was an uncomfortable reminder of my own position in the not so distant past. There are strong echoes of the arguments that were explored in Elizabeth Moon’s novel, The Speed of Dark. In a not so distant future pre-natal testing has all but eliminated autism from the planet. There are still autistic adults who enjoy a relatively privileged, if somewhat restricted existence working for a corporation that exploits their systemizing skills while making accommodations for their autism. A central question in the book revolves around the company’s quest to find a cure that will do away with the need for these expensive accommodations while preserving the systemizing talents of its workforce. If you have not read it I can recommend it. But be warned. Some autistic people cried when they read the ending.

It seems to me that Baron-Cohen comes close to suggesting that we should only cure autism if we can be sure of preserving its “associated talents.” And the other side of that argument is that we should preserve autistics because of their value to society and not because of their intrinsic worth as human beings. I may be doing Baron-Cohen an injustice here. He does refer to the greater danger of eugenics as well.

It is significant that in the radio interview it is the interviewer who raises the eugenic issue, chiding Baron-Cohen for offering a utilitarian rather than an ethical opposition to genetic testing and Baron-Cohen agrees with him. He is at pains to emphasize that even though pre-natal tests may be 5 years away the moral and ethical dimensions are complex and a debate needs to take place now and not be hurried through when the medical technology is a done deed.

In that context the Today Programme made an interesting choice of protagonist to balance Baron-Cohen’s point of view. Professor Joy Delhanty of University college may be familiar to some readers. I blogged about her attempt to offer pre-implantatation genetic diagnosis to parents at risk of having another autistic child. Lacking a genetic test for autism, she proposed to screen for gender and only implant female embryos that were statistically less likely to be autistic. This was not mentioned today. But she did suggest that Baron-Cohen’s fear that a pre-natal test would be used to screen all autistic traits out of the population was misplaced. She insisted that pe-natal testing would only be offered to people who were already significantly at risk of having another autistic child or to family members with a strong genetic risk. The implicit assumption was that only severely autistic traits would be screened out and talented aspies would continue to be born and that this need not concern medical ethicists. Baron-Cohen did not sound convinced.

I know that some people have questioned Baron-Cohen’s judgement in raising this issue when there is no immediate pressing concern.  But Delhanty’s misapprehension of the complexity of the issues surrounding autism, alongside her enthusiasm to implement the latest developments in genetics without regard for the broader societal implications suggests that Baron-Cohen may well have done us all a service by raising this issue now.

Further reading

The discussion of Baron-Cohen’s original piece for the BBC is here. It repays careful reading. The comments perfectly illustrate the subtleties of this question and it is heartening that so many parents and autistic adults are  able to express these subtleties so cogently.

NAS Media Response

Blogs

Kristina Chew at Autism Change

At the Rim

Cat in a Dog’s World (added Jan 8th at 2.15pm)

January 8th, 2009 Posted by Mike | autism advocacy, genetic testing | 25 comments

Obama ignores anti-vaccine agenda

I had just finished reading Kristina Chew’s piece, When a Real Crisis Hits, when this news item caught my attention. Jim Carrey is setting up a $50 million trust fund for his partner, Jenny McCarthy and her autistic son, Evan. Carrey’s daughter will inherit the rest of his $200 million dollar fortune.

While I am pleased that Evan is one autistic child who will not be badly affected by the credit crunch I am a little confused. Last year all the news was that Jenny had recovered her son from autism. Now he is described as still being autistic. Last year Jenny described him as recovered from autism but still needing treatment for seizures. The year before she told People Magazine that Evan’s seizures were not epilepsy but a part of his autism.

This would not matter if McCarthy was just another celebrity mother making contradictory statements about bringing up her child. But she is also an advocate for the belief that vaccines cause autism and her celebrity status gives her ready access to the media. Together with Carrey she is on the board of the anti vaccine organization, Generation Rescue and her supporters are trying to drum up support for a meeting with Barack Obama’s team prior to his inauguration. It looks like Obama’s transition team have already done autism and no anti-vaccine advocates were invited. But the Autism Self Advocacy Network were invited, which is good news for the autism community.

January 4th, 2009 Posted by Mike | autism advocacy, politics | 2 comments

an autism friendly blog for change.

2009 promises to be an important year for us all. The state of the world economy is going to exert pressure on publicly funded services as well as those supported by charities and other not for profit organizations. If we are lucky we will not see a major reduction in autism specific services. But we cannot reasonably expect to see an expansion. Most autistic people and their families will continue to rely on generic services and these too will be subject to downward pressure on their budgets.

One low cost option that can make an enormous difference is the move to make generic services autism friendly. If service providers are made aware of the kind of accommodations that can make life easier for autistic people and their families and their staff have some basic autism awareness training it can make a world of difference.

With emergency services like fire, police and ambulance this has long been the case. Dennis Debbaudt has pioneered the provision of training for first responders. The National Autistic Society is supporting similar schemes in the UK. The appointment of a person with specific responsibility for autism within the Department of Health and the publication of new social care guidelines are welcome initiatives.

Public perceptions of autism are also important. Doom laden campaigns with the message that autism is a mysterious kidnapper of children are not only misleading but also create barriers. If we cannot understand something, or are told that it is beyond our understanding we are more likely to turn away. Scare stories about the cost to society of the “autism epidemic” are also likely to backfire. People are already scared of losing their jobs, their homes, their life savings. Trying to scare them into doing something about autism is a dangerous strategy at the best of times and these are most definitely not the best of times.

Although it is not without its critics, the ongoing NAS campaign to Think Differently About Autism has tried to avoid these pitfalls by being honest about the problems that can come with an autistic spectrum disorder and being positive about what people can do to help. Now Change.org an American social enterprise site promises to do something similar with its new autism blog.

What I really like about this blog is the decision to appoint two editors. Kristina Chew is the mother of a severely autistic child. Dora Raymaker is an autistic adult. She is Co-director of the Academic Autistic Spectrum Partnership in Research and Education and a member of the Autistic Self Advocacy Network’s Board of Directors.

In one of her entries Kristina charts her journey through autism from being a dedicated seeker of cures and recovery to her present situation of accepting her son’s autism. Here is a sample.

Once upon a time, I tried to recover my son from autism, through educational therapies and biomedical treatments. As he’s gotten older, I’ve come to think that focusing on recovery distracted me from truly helping Charlie and truly understanding Charlie. It’s Charlie’s education that is our main priority as we prepare him for his future, and especially an education that takes into account Charlie’s learning style, his tremendous struggles in many areas, and his strengths.

In one of her entries about a talented artist with autism Dora writes

How can we change to world so that instead of just aspiring to get Bula “a job working at a local gallery, cleaning and taking care of the art supplies,” we instead aspire to give Bula a chance to succeed as a working artist doing what he loves, and being treated with the respect that anyone with his talents deserves?

This is definitely one for the blog roll. Read and enjoy.

January 4th, 2009 Posted by Mike | autism acceptance, autism advocacy | 4 comments

Autism Speaks for Lisa Blakemore-Brown

While I am grateful to Michael, Dinah and Larry for sharing their impressions of the TreeHouse lecture in my post, Bob Wright - Autism Speaks in London, their reports do not tell the whole story. Lisa Blakemore-Brown was in the audience and she has published a remarkable account of the meeting  on the One Click website. From the start we are left in no doubt who the real star was - Lisa herself.

Vaccines And Autism - Thank You Bob Wright
Bob Wright, ex Head of NBC and co-founder of Autism Speaks, one of the biggest autism charities in the world, speaks out in UK about vaccines and autism in answer to comments made by Lisa Blakemore-Brown, UK Psychologist Specialist in Autism and related disorders.

“I agree with everything you said” responded Mr Wright in a debate at TreeHouse’s Inaugural Lecture at City Hall London during the evening of October 22nd 2008 after I raised various issues and said that the reason autism was taking a back seat in terms of it’s understanding and funding, was entirely political and it was political because it was largely to do with the vaccine issue.

Wright has come in for some criticism for making comparisons between autism and cancer. But according to Blakemore-Brown we are missing the point.

He used the analogy of cancer, a number of people missing the point. Mr Wright referred to his own experience with cancer and how he would not have survived had it not been for the advancements in the field and asked how it could be, given the undoubted epidemic of autism, that there had not been such support and concern for autism. [...] I absolutely agreed with Bob’s use of the analogy of cancer, referring to the fact that I too am a survivor of an aggressive form of breast cancer, and that my aunt had died of the same thing at the same age I got it some three decades earlier. Undoubtedly if it had not been for the advances in cancer diagnosis and treatment I would not have been there speaking to the Panel in the debate at City Hall.

Blakemore-Brown is missing the point.  She and Wright may have direct personal experience of cancer but they do not have direct personal experience of autism. An autistic member of the audience who also had cancer was clear that autism and cancer are not comparable in any way. Blakemore-Brown may wish to ponder this point. The same standards of evidence based medicine that validated the treatments that have kept her and Wright alive have been applied to the vaccine controversy and it has failed the test completely. But no. Medical science is OK when you have cancer. When it contradicts your pet theory it must be tainted.

I then said that I felt the reason autism had not been treated to the same level of concern and support was entirely political – and that the reason for that was largely because of the vaccine controversy.

Lisa Blakemore-Brown’s theory runs thus:

• There is an autism epidemic.
• You cannot have a genetic epidemic so there must be an environmental cause.
• The most likely candidate is the vaccination programme.
• If the medical establishment took the autism epidemic seriously they would have to admit to the role of vaccines.
• This they can never do because of their ties to the pharmaceutical industry.
• Therefore they try and minimise the level of the crisis. When parents insist that their child is medically ill because of vaccine damage they are blamed for causing their child’s autism or even accused fabricating the symptoms.

And it’s all part of a big conspiracy.

There were powerful vested interests shifting this agenda out of the way by any means they can. Those who felt there was a case to be made for some children experiencing adverse reactions to vaccines should have the freedom to say so without being jumped on. I referred to the fact that I was the Consultant Psychologist who helped set up the very first school for boys with Asperger Syndrome 15 years ago, Southlands in Lymington, and that I had also been deeply concerned and involved with mothers falsely accused of causing their children’s autism (and indeed cot deaths and other problems such as ME, following adverse reactions to vaccine) with the system applying the terms MSBP and FII. I have also written a book “Reweaving the Autistic Tapestry” (2001) which the National Autistic Society does not even acknowledge given the politics of all this.

Memo to Blakemore-Brown: The NAS does not include my book in its catalogue either. It has nothing to do with politics. Neither of us made the cut. That’s all. Her next complaint is that professionals should be free to explore all possiblities via traditional academic methods. But instead the question has been turned into a media slagging match via the internet.

It is scandalous that instead of us professionals – there to serve the public - being able, in the time honoured way, to see a condition and seek to define it, understand it, find out it’s cause, talking openly with each other through lectures and papers published in uncompromised journals; if necessary provide support and treatment for it, the most extraordinary battle has ensued with various factions hacking at each other wherever they can and especially over the internet, as the epidemic of autism has grown and grown.

So Andy Wakefield’s press conference, Generation Rescue’s ad campaign, congressional hearings in the USA, research commissioned by vaccine injury lawyers and leaked to the press, is Blakemore-Brown condemning these subversions of the time honoured way? The only reason the vaccine controversy has flourished in relation to autism for the past ten years is because those scientists and clinicians who sought to settle the question in the time honoured way were constantly ambushed by the headline grabbing antics of the anti-vaccinationists.

So far so laughable. But the worst is yet to come. This is Blakemore-Brown’s take on genetics.

Of course even the genetic argument is not simple. Take Thimerosal, another issue discussed by Mr Wright over the years. It is a preservative which is 49.6% Mercury, a neurotoxin and a genotoxin. It can not only interfere with the brain, it can interfere with the DNA! It is in the flu vaccine and was first put into childhood vaccines (DTP) in 1928 by Eli Lilly, so if any of our parents or grandparents were particularly susceptible - maybe because they could not excrete the mercury from their bodies, which in itself could be a genetic variation - their DNA could have been damaged by the Thimerosal. This, in turn, could have been passed on to at least one of their offspring. From then on, even if their children were not vaccinated, the “genetic” damage could be passed on and arguments made that the condition was purely genetic. During the 1980’s the vaccine programme was stepped up and not only were children given more mercury containing vaccines – therefore more mercury – but they were given them at younger ages – therefore they would be more vulnerable.

So, autism is caused by a mutation of our DNA that began in 1928. Thiomersal in vaccines gave our grandparents a genetic mutation that made them vulnerable to thiomersal. They passed this vulnerability on down the generations until additional thiomersal in vaccines triggered an autism epidemic. And then the conspiracy gets really bizarre.

The soaring charted increase began then, as did the use of the term MSBP/FII to blame mothers for causing or fabricating what many know to be adverse reactions to vaccinations. It cannot be a coincidence that Professor Sir Roy Meadow, who invented the term [MSBP], sat on the JCVI (Joint Committee for Vaccination and Immunisation) specifically the sub committee concerned with adverse reactions during that decade and that the United States CDC was also represented in this Committee.Incidentally, Professor Meadow was Knighted some months later.

There are legitimate concerns about the diagnosis of Munchausen’s Syndrome by Proxy in parents of autistic children. I raised those concerns in my book and I know that they are shared by the NAS. But Blakemore-Brown is asking us to believe that Roy Meadow invented MSbP in a deliberate attempt to divert attention from a vaccine induced epidemic of autism and cot deaths and was knighted for his efforts!

By comparison her attempt to smear Neurodiversity as a movement to deny interventions to autistic children is quite tame even though she calls it the

Sinister Aspects Of Neurodiversity

According to Blakemore-Brown it is OK for autistic adults to speak up for themselves and say that autism is not a medical problem and they do not want or need a cure. that is admirable. But she then asserts that autistic adults, and presumably everyone else, have no right to criticize parents who claim their child is vaccine damaged. She continues with the totally unsubstantiated claim that autistic adults are seeking to deny educational interventions to autistic children. I assume she is referring to ABA, an unproven intervention that arouses a lot of controversy for its potential for abuse.  Her final misrepresentation is to suggest that we would deny medical treatment to sick children.

Knowing many adults with autism as I do, I cannot imagine that they would want to score a home goal against the younger people in their community, to prevent them from getting very early educational support rather than possibly psychiatric drugs and possibly wrongful incarceration years later; and stopping them getting treatment if they are ill. Their message can be strong without denying the problems facing others in the same community of autism, even if they don’t have to face any problems for which they need support. All that we all say deserves to be heard.

Nice one, Lisa. In the face of I Exist, a mass campaign in the UK by the NAS in conjunction with autistic adults to show precisely that high functioning autistic adults do face problems for which they need support, you misrepresent them completely. All that we all say may deserve to be heard. But listened to? That is another matter.

October 30th, 2008 Posted by Mike | Autism Speaks, autism advocacy, vaccines | 7 comments

Bob Wright - Autism Speaks in London

On Wednesday 22nd October TreeHouse hosted their inaugural autism lecture with guest speakers:

• Bob Wright, the founder of Autism Speaks;
• Anya Ustaszewski who is autistic, a member of the London Autistic Rights Movement and is on the executive committee of ASSERT Brighton and Hove, an organisation which provides support and information to people on the autistic spectrum and their relatives, partners and carers;
• Virginia Bovell OBE who has a teenage son with autism. She is a trustee of the National Autistic Society and co-founder of TreeHouse.

I had to decline my invitation to attend because of the impossibility of taking two days off work to travel to London for an evening meeting. I would like to have heard how the Autism Speaks message translated to a UK audience. Fortunately Thursday’s Times carried an opinion piece by Bob Wright. One member of the audience at the lecture tells me that this is an accurate reflection of the views Bob Wright expressed at the meeting.

Fighting against autism or working with autism?

Bob Wright begins by describing his grandson’s regressive autism.

How does a child vanish in plain sight? Our grandson, Christian, used to watch trucks drive by and name them all - “fire truck”, “mail truck” - until, suddenly, he had no more words. We used to go for walks on the beach until he could no longer tolerate the feeling of sand on his feet. Warm smiles were gone, too, replaced by eyes that would not connect with mine.

This harks back to folk tales about changelings. It may well describe the initial feelings of bewilderment when a child regresses. But to hold to such a view years after the event is not helpful. Christian is different but he is still Christian. The psychological effect of holding to the changeling myth is that all efforts are devoted to reversing the change and recovering the “old” child.

Meanwhile the “new” child is busy adapting to the change. From his point of view he has not regressed. Instead the world has become a different, perhaps a more scary place and he is doing his best to cope. The world has changed and he has changed accordingly. His way of coping is what we see as his autistic behaviour. From his point of view we must seem like the crazy ones. Against all the evidence we insist the world is just the same as it ever was and try to normalize his behaviour.

Autism acceptance means trying to look at the world from the child’s point of view, understanding their behaviour as a rational response to the situation they are in and trying to make the situation more acceptable to them. Remove the pressure. Remove the stress. Let them know that they are OK and that we can be trusted. Then we can go forward together. This is the complete opposite of the strategy of battling through the autism to recover your child.

It may be that in some cases battling autism does produce results. Autism acceptance also has its success stories. I do not know which approach is most successful. But most reports measure success in terms of observable childhood outcomes: indistinguishable from peers, mainstreamed without support etc. It is hard to tell if the subjects of these success stories feel an improvement in their level of contentedness or self esteem. Researchers rarely ask the children what they think and I am not aware of any studies that follow children into adulthood and attempt to evaluate what they feel in relation to the way they were raised and educated.

Sub-prime opinions?

I was surprised to read Bob Wright’s recollection that

Christian’s doctors told us “goodbye and good luck”

after he was diagnosed. As chair and CEO of NBC he should have had access to the finest specialists money could buy. Is that the best advice they could offer? Or did it go more like this?

Bob Wright: My grandson has autism and I want you to cure him. Money no object.

Autism Expert: There is no cure but with appropriate interventions we can help him develop to the best of his abilities.

BW: No cure! I am not paying for defeatist talk like that! I want a second opinion. You’re fired!

AE: I am sorry you feel that way. Goodbye and good luck.

If you have a strongly held opinion you are more likely to remember those events in the past that bolster your opinion and downgrade or reinterpret events that undermine your position. We are all human. We all do it. Or maybe Bob Wright really did invest in some sub-prime medical opinions on autism.

Lonely or Lonesome?

Because it’s a spectrum disorder, a person with autism can have anything from mild symptoms, such as a literal approach to language, making it impossible to follow the subtleties of conversation, to being unable to speak, living in a state of lonely despair and agitation. Some people with autism can lead independent lives, others may never be able to care for themselves.

So being unable to speak is evidence of living in a state of lonely despair and agitation. While people with language are only mildly affected and merely struggle to follow the subtleties of conversation.  He is confusing external manifestations with inner life. I know people with “mild symptoms” who are deeply aware of and unhappy with their social isolation. I also know non-verbal people who seem happy enough but who am I to tell? We should not presume to apply standard criteria for happiness to non-standard people.

We should also be wary of confusing life skills with cognitive and linguistic prowess. The most commonly used tests of cognitive ability (Weschler) are heavily dependent on verbal ability. Michelle Dawson has reported on the different picture we get if we use tests that are less dependent on the subjects verbal ability (Raven Matrices). Still other tests are used for social adaptation (Vineland scales) because of the frequent disparity between measurable performance in differing areas of competence.

Epidemiology is not a synonym for epidemic

The need is particularly urgent in the UK - the incidence of autism is greater here than in the US (where it is 1 in 150), and is rapidly increasing.

Never mind that he means prevalence, not incidence, does he really think that the rise in reported prevalence from 1 in 166 at the start of the century to our current estimate of 1 in a 100 represents a real increase in numbers? Most commentators see it as a vindication of the NAS estimate in the 1990s of a figure of just over 1 in  a 100 and evidence that epidemiology is at last beginning to capture a true picture of prevalence. There are areas of the USA such as New Jersey which also report prevalence figures comparable to the UK and the explanation does not need to invoke an epidemic.

Dr. Zahorodny said the higher rate of autism spectrum disorders identified in New Jersey is likely due in part to the more comprehensive and detailed nature of the health and education records maintained by public and private health and education agencies, which served as the basis of their survey method. In addition, the public and professional awareness of autism in New Jersey is very high, making for earlier identification of affected children.

Bob Wright, earlier in his piece, acknowledges that autism is a spectrum disorder. Somebody should tell him that most of the increase is in autistic people who fall within the normal range for intelligence and ability. They go to mainstream schools and the lucky ones go on to hold mainstream jobs and maybe find a life partner and raise a family.

For many of us it is not so much that autism is

one of the most devastating childhood disorders of our time.

Rather, as Bob Wright himself acknowledges

Families can be ground down by the need to give constant attention to their child and struggle with a welfare or education system that is often unresponsive to their needs.

The cost of autism

Bob Wright refers to the most recent study on the economic costs of autism by Knapp, Romeo and Beecham which revisits ground covered by a previous study  [Järbrink K & Knapp M (2001) The economic impact of autism in Britain, Autism, 5(1) 7-22.] The forward to this paper posed some very interesting questions.

The Shirley Foundation is pleased to sponsor this study of the economic impact of autistic spectrum disorders in Britain. This follows the seminal study the foundation also initiated and sponsored in 1999 which – as one would expect from Professor Martin Knapp and his team – has now been developed with considerably more sophistication in methodology. The conclusion as to lifetime costs is, despite inflation, little changed from the earlier study. However, the increase in measured incidence and the number of life years of autism (which exceed those lived with Alzheimer’s disease) generate a national cost of £28 billion a year - a figure reinforced by economic research in Australia.

May this quite astonishing finding mobilise researchers, families, politicians, autism charities and our public servants to become activists in demanding answers to The Big Question of what causes the disability associated with autism. [my emphasis] That way lies hope, lies funding, lies effective interventions and lies choice for people with autistic spectrum disorder and their families. Ultimately, further research and development can help us reduce the economic burden associated with this disability and, even more importantly, help improve the lives of individuals and families.

The Big Question is the missing heart of Bob Wright’s position. For him it is already answered. Autism does not have associated disabilities. It is the disability. It is autism that has an overwhelming emotional burden, that devastates families, that is one of the most devastating childhood disorders of our time.

He sees autism as a burden on families and on the economy and as a burden on people who suffer from autism spectrum disorder. While he makes passing reference to the idea that autistic people suffer because autism is still met with a mixture of ignorance, prejudice or indifference, he only really considers their needs in relation to the impact this has on their families and on society.

This is apparent when he writes that

A study last year by the Foundation for People with Learning Disabilities calculated the lifetime cost to society of caring for someone with autism can be as much as £4.7 million per person. That includes everything from direct medical expenses and the provision of special education, to the hidden costs of childcare, adult care in later life, respite and family care, as well as the lost wages for carers who have to give up their careers.

Actually, lost wages for carers is quite a modest item included in family costs. Martin Knapp and his colleagues calculated total family costs including loss of earnings in relation to caring for autistic adults as £1.3 billion per annum. For comparison, the annual cost to autistic adults of  lost employment is £9.2 billion. Bob Wright discusses the economic impact of autistic people. He neglects entirely the economic impact on autistic people. I have had cause to question the assumptions behind Knapp’s calculations in a previous post. Loss of earnings is not so much a burden on society as a burden on unemployed autistic adults, a burden of poverty.

Cost effective interventions

Bob Wright is unequivocal.

Starting with diagnosis, every child with autism should have access to applied behavioural analysis (ABA), at present the only therapy regimen widely considered to be effective.

Obviously, Bob was not at the recent NAS International Conference where Sir Michael Rutter opined that there was

No convincing evidence [of] benefits of psychological interventions contingent on either very early or very intensive application.

In fact Autism Speaks did not have any presence at the conference apart from a single delegate and a few leaflets. This  surprised me as the conference theme of Research into Practice sounds just right for them.

One final point on the cost of autism. If society is spending billions on autistic children and the result is that we finish up spending tens of billions on autistic adults, is that a marker for how terrible autism is and a sign that we need to spend even more? Or could it be that we are wasting money on bureaucracy and ineffective interventions? If we listened to autistic people and their parents could we spend the same amount and be a lot more cost effective. I am surprised that a seasoned businessman like Bob Wright did not explore this more thoroughly.

The Yanks are coming

Bob Wright came to Britain as the guest of TreeHouse, an autism educational charity that does some good work around the country and supports the TreeHouse School in London.

Bob described them as THE national charity for autism education. Perhaps he was being polite to his hosts. Perhaps he is unfamiliar with the National Autistic Society, the oldest autism charity in the world, the administrator of six schools for autistic children and the instigator of the Make Schools Make Sense Campaign.

I am not decrying the work of TreeHouse. But Bob Wright’s article in the Times suggested that TreeHouse were the only show in town and now Autism Speaks was here to give them the support that they were sorely lacking and surely deserved. Then he referred approvingly to the Autism Bill without acknowledging its promoters. You guessed it - the NAS. He wants us to emulate the cross party approach that Autism Speaks promotes in the USA. Well the All Party Parliamentary Group on Autism is currently in its 9th year and is another initiative of the NAS.

While it is true that Autism Speaks has been spectacularly successful in the USA, it is a bit much for Bob Wright to come over here and, with complete disregard for our past achievements and continuing efforts like the Think Differently campaign,  expect us all to follow his lead. Part of the success of AS involves typical corporate expansion - absorbing the opposition like Cure Autism Now and NAAR in order to acquire their professional expertise and their funding base. Autism Speaks does have a UK presence. It is being funded until  2012 by the Shirley Foundation.

Steve Shirley has been quietly funding major projects on autism for many years now. She wrote the foreword to study on the costs of autism that I quoted above. I first heard of her when her foundation sponsored the first ever online international autism conference Autism99 in conjunction with the NAS.

(NB the current autism99 website contains a strange mix of sensible articles and an autism library promoting biomedical cures and anti vaccine rhetoric. It has no connection with Steve Shirley or the NAS)

Autism Speaks UK’s stated Aim …

… to raise funds to accelerate biomedical research to determine and understand the causes and biological basis of autism spectrum disorders; and through that understanding to discover and promote new ways of improving the quality of life for all those affected.

is not as stridently pro-cure as Autism Speaks mission statement in the USA

We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder.

For comparison here is the NAS Mission Statement

“We champion the rights and interests of all people with autism and aim to provide individuals with autism and their families with help, support and services that they can readily access, trust and rely upon and which make a positive difference to their lives.”

For Autism Speaks and Bob Wright autism is primarily a problem to be eradicated. But until we find effective means of prevention and cure he advocates doing our best to normalize autistics via ABA.

I can already hear my critics suggesting that, given the general level of ignorance about autism, it is churlish to criticize someone like Bob Wright, who is at least raising money, raising the profile of autism and and making some good points. I admit that some of his statements about the need for more understanding and more financial support are welcome. But there is so much else about his message that is wrong. He promotes the wrong sort of understanding; the wrong sort of projects for financial support. He equivocates on the questions of biomedical quackery and vaccines. (His daughter has bought into the whole biomedical approach for Christian) He may well say that

Autism speaks. It’s time for the world to listen.

But there are many in the autism world who would like Bob Wright to speak less and listen a bit more.

October 26th, 2008 Posted by Mike | Autism Speaks, National Autistic Society, autism advocacy | 43 comments