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.
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?
Autism Speaks founder Suzanne Wright appealed for clips of autistic children to be used in a new promotional video, “I am autism” that would “shine a bright light on autism.” And if you watch the video with the sound turned off it does shine a bright light. (Thanks to Terrie on LBRB for this idea.)The first half of the video shows footage of children and young people on their own. In the second half they are joined by their families. It is a positive film of children enjoying their favourite places and then sharing their enjoyment with their families.
When I watched it with the sound on I started to get the fury. My thanks to Cody for transcribing the whole thing. All quotes are from Cody’s Live Journal.
man: I am autism. I’m visible in your children, but if I can help it, I am invisible to you until it’s too late. I know where you live, and guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language.
So autism is a hidden threat that is all around us and it is after our children. We have been here before with the infamous “Ransom notes” campaign at NYU. at the time I wrote
The NAS made a similar mistake a few years ago. They accepted a pro bono offer from an advertising agency. Fotunately the resulting campaign was baffling rather than insulting and exploitative. Now they consult with autistic people before launching campaigns about them. Perhaps NYU should follow their example.
There is little danger of Autism Speaks consulting with autistic people. they have still to appoint a single autistic person to their senior management team or board of directors.
Back to the transcript.
I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain.
Work faster? It sounds like autism is more damaging to the individual than AIDS, cancer and diabetes combined. I know this is supposed to be a poem but that is taking poetic licence too far. My guess is that it is a reference to the fact that the prevalence of autism is greater than the prevalence of those three conditions combined. But mentioning autism in the same breath as life threatening diseases is a tired device. It is meant to scare you but it has become so clichéd it is losing its power.
Marriage failure? If your marriage is weak having a disabled child will expose the weakness in your marriage. Heck, just having a child sends some men running. But I have yet to see any reliable evidence that marriage break up is greater in couples with an autistic child than it is for any other disability.
“Your money will fall into my hands!” I never knew I had an irony meter until this comment exploded it. Quack cures and treatments are what impoverish autism parents. and if you go around telling parents that autism is worse than AIDS or cancer you are the one lining them up for the snake oil merchants.
I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain.
Yet all the kids in the video are shown enjoying public places with their families. And have you noticed that there has been no mention so far of what it is really like to be autistic? This is all about what autism will do to you, the families of autistic people. The theme continues.
You have no cure for me. Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist, of course, until it’s their child. I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering ‘who will take care of my child after I die?’ And the truth is, I am still winning, and you are scared, and you should be. I am autism. You ignored me. That was a mistake.
I have yet to meet a scientist who thinks they have enough resources. But I would not describe them as desperate. Neighbours, in my experience are not indifferent. They want to help and they want to learn how. All they will learn from this video is that autism is some spoiled, attention seeking brat who wants to make my life a misery because I ignored him. And he chooses to take it out on my kids.
The second half of the “poem” is the response of the families. It is mainly “we are family, we are the world” clichéd utterances. Is the author really a grammy award winning songwriter? But I just want to highlight a couple of passages.
woman: And to autism, I say…
man: I am a father…
woman: A mother…
woman: A grandparent…
man: A brother…
woman: A sister…
man: We will spend every waking hour trying to weaken you.
woman: We don’t need sleep, because we will not rest until you do.
woman: Family can be much stronger than autism ever anticipated, and we will not be intimidated by you…
woman: …nor will the love and strength of my community.
man: I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.
woman: Autism? You forget who we are. You forget who you are dealing with. You forget the spirit of mothers…
all: …and daughters, and fathers, and sons…
(crosstalk: several people calling out “We are” and the names of different countries)
all: We are the United Nations.
man: We are coming together in all climates.
woman: We call on all faiths. woman: We search with technology…
woman: …and voodoo…
woman: …prayer and…
man: …herbs…
man: …genetic studies…
woman: …and a growing awareness you never anticipated.
man: We have had challenges, but we are the best when overcoming them.
woman: We speak the only language that matters:
all: Love for our children.
woman: Our capacity to love is greater than your capacity to overwhelm.
woman: Autism is naive.
woman: You are alone.
man: We are a community of warriors.
all: We have a voice. woman: You think that because some of our children cannot speak, we cannot hear them. That is autism’s weakness.
woman: You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands.
man: You have not properly been introduced to this community…
all: …of parents and grandparents, of siblings and friends and schoolteachers, therapists, pediatricians, and scientists.
woman: Autism, if you are not scared, you should be.
man: When you came for my child, you forgot:
all: You came for me.
woman: Autism: Are you listening?
woman: We search with technology…
woman: …and voodoo…
woman: …prayer and…
man: …herbs…
man: …genetic studies…
Voodoo? This odd mix could almost be the agenda for a DAN! type conference, except that it was Christianity not voodoo that killed an autistic child who was the victim of an attempt to exorcise his autism in a store front church. I do not think he has killed anybody yet but DAN! luminary Jeff Bradstreet also advocates exorcism.
woman: You think that because some of our children cannot speak, we cannot hear them. That is autism’s weakness.
woman: You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands.
man: You have not properly been introduced to this community…
all: …of parents and grandparents, of siblings and friends and schoolteachers, therapists, pediatricians, and scientists.
Shouldn’t that read “Just because some of our children can speak that does not mean you can hear them. Listen to us instead. This community of everybody under the sun except autistic people themselves.”
I will end with this Press Release from ASAN in which autistic people do speak. I am not autistic but they speak for me as well.
Autistic Community Condemns Autism Speaks’ “I am Autism” Campaign
“We are the true voices of Autism,” say Autistic adults; Campaign spreads stigma, prejudice and inaccurate information; ASAN vows protest of upcoming Autism Speaks fundraisers
Washington, DC (September 23rd, 2009) - The autism community reacted in horror today to Autism Speaks’ new “I am Autism” campaign, presenting Autistic people as kidnap victims and burdens on their family members and communities.
“I am autism. I have no interest in right or wrong. I will plot to rob you of your children and your dreams….And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain,” says the “I am Autism” video, released yesterday and created by Academy Award-nominated director Alfonso Cuarón and Grammy-nominated songwriter/producer Billy Mann.
“This is the latest in a series of unethical fundraising strategies adopted by Autism Speaks,” said Ari Ne’eman, an adult on the autism spectrum and President of the Autistic Self Advocacy Network (ASAN), “This type of fear mongering hurts Autistic people, by raising fear and not contributing in the slightest to accurate understanding of the needs of Autistic adults and children.” ASAN’s Columbus, Ohio chapter has already made arrangements to protest Autism Speaks’ upcoming local fundraising walk and other ASAN chapters will be making similar arrangements shortly, said Ne’eman.
In addition to relying on fear and pity mongering to raise funds, the Autism Speaks video repeats frequently referenced claims of higher than average divorce rates amongst parents of Autistic children. However, a 2008 study conducted by HarrisInteractive for Easter Seals in cooperation with the Autism Society of America found divorce rates for parents of Autistic children lower than those for families with no children with disabilities. The video also relies heavily on the idea of rapidly increasing autism rates. Another new study, released the same day as the video, by the British Government’s National Health Service found that autism rates among adults are the same as amongst children, indicating that the popular “epidemic” claim of rapidly increasing autism incidence is likely false.
“This video doesn’t represent me or my child,” said Dana Commandatore, a parent of an Autistic child living in Los Angeles, California. “Whatever the challenges that autism may bring, my son deserves better than being presented as a burden on society. Autism Speaks’ misrepresentation makes my life and the life of my child more difficult.”
“Autism Speaks seems to think that parents’ embarrassment at their kids’ meltdowns is more important than autistic kids’ pain,” writes Sarah, an Autistic blogger at the blog Cat in a Dog’s World, “Autistic people deserve better than what Autism Speaks has to offer.”
The new video is reminiscent of the December 2007 NYU Child Study Center “Ransom Notes” campaign, which consisted of faux ransom notes claiming to be from an anthropomorphized disability which had kidnapped a child. Those ads were withdrawn after two and a half weeks, due to widespread outcry from self-advocates, parents and professionals and the condemnation of twenty-two national disability rights organizations, led by the Autistic Self Advocacy Network. The Ransom Notes controversy was reported on by The Wall Street Journal, The New York Times, Good Morning America, The Washington Post and other major media outlets. ASAN announced plans to work with the cross-disability community on a similar response to Autism Speaks’ campaign.
“The voices of real autistic people, and of families who do not subscribe to the presentation of their family members as something sinister and criminal, clearly do not matter to Autism Speaks,” said Paula Durbin-Westby, an adult on the autism spectrum in Virginia, who serves on the board of the Autistic Self Advocacy Network. “Our community is furious about Autism Speaks’ continued exploitation and will be taking action.”
Selected initial responses to Autism Speaks’ “I am Autism” campaign from bloggers in the Autism community follow:
Club 166 (Parent): http://club166.blogspot.com/2009/09/when-will-they-listen.html
“The above video takes up where the Ransom Campaign ended, and goes on from there. Not content just to dehumanize autistic individuals, the Autism Speaks video goes on to paint a picture of horror using the most vivid imagery it can find-your marriage will fail, you will go broke, you will never be able to function in society at all, etc…
Two years ago the NYU Child Study Center claimed ignorance of the way that autistic (and other disabled individuals) felt. The response at that time was heard throughout the country, even in major national media. I wonder what excuse Autism Speaks can possibly come up with this time.”
Turner and Kowalski (self-advocate): http://turnerandkowalski.wordpress.com/2009/09/23/i-am-autism-speaks/
“I am Autism Speaks
I will steal your voice and make sure you can never speak for yourself.
I will steal your parents’ money and spend it on a residence on Park Avenue.
I will use demeaning language to degrade, pity and marginalize you.
“This is horrific. I cannot believe that these people thought it was OK to demonize a developmental disorder in this way, behaving as though autism were something separate from the people who have it, like a wart or a blight or a boil that should be burned off or lanced and drained before it infects someone else or destroys your marriage, rather than what it really is, a differential neural construct that is just as much a part of the people who have it as their eye color. Is there any other developmental difference or genetic disorder that could be vilified in this way with an assumption of impunity? Dyslexia? Schizophrenia? Tourette’s? Depression? Chromosomal disorders? Doubt it.”
“Autism Speaks seems to think that parents’ embarrassment at their kids’ meltdowns is more important than autistic kids’ pain. They’re wrong in that, and they’re also wrong to suggest that donating money to Autism Speaks and trying to find a “cure” is the only way to solve this problem. Because while Autism Speaks-funded scientists play with genes in their laboratories, real autistic people are living our lives and will continue to suffer serious anxiety in many public places. Instead of writing another check to Autism Speaks, I suggest actually trying to figure out why an individual autistic person may be experiencing these difficulties. And taking steps on both a personal and societal level to ensure that public places are more accommodating of autistic people.
Autistic people deserve better than what Autism Speaks has to offer.”
–
Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530
Alison Tepper Singer has resigned from Autism Speaks over the question of vaccines and autism. Singer apparently accepts the scientific consensus that there is no evidence of a link between vaccines and autism, unlike her ex-employer, Bob Wright.
The Interagency Autism Coordinating Committee (IACC) was meeting this week to vote on a draft of the Strategic Plan for Autism Research. It contained two proposals for further research into vaccines. Alone among the six public members of IACC, Singer voted with the federal members of the committee to remove these proposals from the plan so they could be examined by the National Vaccine Advisory Committee.
The decision was condemned by Autism Speaks in a press release because the proposal to refer these proposals back was not communicated to the public members prior to the meeting. According to Wright because of this “last minute deviation” the plan “is tainted and cannot be supported by the autism community.” This is curious because the press release also tells us that:
Autism Speaks Executive Vice President Alison Tepper Singer was the sole public member to cast a vote in support. The evening prior to the vote, Singer submitted her resignation to Autism Speaks – which was accepted – based on her intention to vote on certain Strategic Plan vaccine safety matters in a way that diverged from Autism Speaks’ position on this issue.
So Singer knew about the proposal the night before and presumably so did Autism Speaks when she told them why she was resigning. So what is Autism Speaks up to? I have written previously about the tension within Autism Speaks between Wright’s agenda and the way he runs Autism Speaks like a private corporation and the scientific agenda he is funding. I think that this latest posturing by Wright over the alleged “last minute deviation” is an attempt to express his support for the vaccine hypothesis. But by dressing it up in procedural rhetoric he is also attempting to keep his scientists onside.
Will any scientists follow Singer and resign from Autism Speaks? And where will she lead? Obama is planning a massive injection of funds into scientific research as part of his recovery plan. If the life sciences get their share it will be interesting to observe the changing landscape as private funding is squeezed by the recession (how many celebrity donors were burned by Madoff for example?) while Obama introduces a New Deal for publicly funded science.
Singer has shown herself to be more than capable in her role at Autism Speaks. She has made mistakes in the past, most notorious being her comments in the film Autism Everyday. But her espousal of scientific evidence may lead to advancement within the Obama administration. Such a prospect may reinforce the commitment to scientific principle among more of the staff at Autism Speaks and prompt more resignations.
Sullivan has posted the full text of Singer’s own press release and the one from Autism Speaks with a commentary on Left Brain Right Brain
There has been some consternation amongst critics of Autism Speaks at the news that it has been designated a non-governmental organization (NGO) associated with the United Nations Department of Public Information (DPI). Both LeftBrainRightBrain and The New Republic have articles explaining why this is not a good thing for the autistic community and their allies. Autism Speaks has a dubious record in misrepresenting the facts about autism and its refusal to appoint any autistic person to a position of influence or authority undermines its stated aim of achieving one voice for the autism community.
I can think of at least three routes to achieving one voice.
A consensus position is achieved based on discussions involving the whole autism community.
A single view prevails by force of argument based on the evidence.
A single view held by a powerful organization prevails by force majeure.
In my opinion we are still a long way off developing the means to pursue route one. I think that the whole community is going to have to learn to live with some sort of pluralism in which many voices are heard and listened to. We are unlikely to achieve one voice except by force majeure and Autism Speaks seems to agree. It is using the wealth and power of its founders to impose their view as the voice of the autism community.
Does this mean that it will now impose its view on the United Nations? I think this is unlikely. There are thousands of NGOs involved with the UN. 1664 are associated with the DPI alone. At present I believe Autism Speaks is the only autism related NGO. But there is nothing to stop other organizations from applying. I will suggest this within the National Autistic Society. So long as you are a not for profit organization that can meet the criteria, you are free to apply.
I have seen suggestions that its critics should protest at UN recognition for Autism Speaks. This will have no effect on the United Nations and could reflect badly on us. Autism Speaks reflects the consensus opinion on autism in the larger community more so than do proponents of neurodiversity. It is much better, in my opinion, to raise our voices rather than be seen as trying to silence theirs. Autism speaks with many voices would be a possible slogan to organize around in the run up to World Autism Day on April 2nd next year. Getting a positive message for autism acceptance and the ideas of neurodiversity into the public arena will serve us better than a negative campaign.
Meanwhile, Autism Speaks official recognition by the UN could be quite useful. A few of us are waiting for answers to questions about autistic representation within Autism Speaks. Accoding to the criteria for recognition
the NGO should have statutes/by-laws providing for a transparent process of making decisions, elections of officers and members.
In view of their official status as an NGO I think it is in order to repeat our questions and to copy our requests for transparency to the DPI at the UN. Contact details for the DPI are here.
It is also the sixtieth anniversary of the Universal Declaration of Human Rights. Although it seems to be honoured more in the breach than in the observance, this is an important campaigning tool. Another of the criteria for recognition states that
the NGO must support and respect the principles of the Charter of the UN and have a clear mission statement with those principles.
So how does Autism Speaks propose to mark the sixtieth anniversary? In particular, what steps do they propose within the autistic community
It would be instructive for self advocacy organizations within the autistic community to approach “the world’s largest autism advocacy organization” and “officially designated a non-governmental organization (NGO) associated with the United Nations Department of Public Information (DPI)“ to ask for its support in campaigning for the rights enshrined in the Universal Declaration to be applied to autistic people everywhere. It would seem appropriate to use this opportunity to call upon the incoming President to announce a date when the USA will ratify the UN Convention on the Rights of Persons with Disabilities.
Now that Autism Speaks is open to public scrutiny as an official NGO of the United Nations I think that proposals for joint activity around principles held in common with the UN are a positive way to get our messages across and challenge the old thinking.
Lisa Jo Rudy on The Autism Blog asks why Autism Speaks’ New Board Members Include No One with Autism? It is a good question. Autism Speaks has grown phenomenally since its inception in 2005. Suzanne and Bob Wright set up Autism Speaks in response to their grandson’s diagnosis of autism. Bob Wright’s background as president, then chairman and CEO at American media giant NBC helped shape the organization of Autism Speaks.
It is a not for profit corporation that is run from the top down with a high powered staff and a board of directors who bring personal wealth, business acumen and, in many cases, a family connection to autism. But after three years of spectacular growth it still has not appointed anybody with autism to a senior post within the organization. There is no lack of suitable candidates. As Lisa Jo Rudy points out:
It’s not as if the Wrights (who run Autism Speaks) don’t have impressive people on the autism spectrum to choose from. There are authors, speakers, professors, researchers and artists - all of whom have impressive public profiles, all of whom have the appropriate credentials, and many of whom would be eager to take an active role with Autism Speaks.
But if we look at the history of Autism Speaks in more detail it is pertinent to ask why the Wrights would ever consider inviting autistic people onto the board. And even if they did would autistic people feel comfortable joining Autism Speaks?
From the outset Autism Speaks was aligned with the National Association for Autism Research, (NAAR) which had raised over $20 million for autism research since its inception in 1994. Within a year the two organizations had merged. This was the key to Autism Speaks success. Bob Wright was in a position to deliver national media coverage and celebrity fund raisers like Paul Simon. This gave Autism Speaks a much higher profile than any other autism organization and a massive fund raising capacity. But it lacked infrastructure. This was obtained via a series of acquisitions and mergers, first NAAR and then, in 2007 Cure Autism Now (CAN) which had previously disbursed grants of $39 million in its 12 year history.
By any measure Autism Speaks has been an outstanding success. NAAR and CAN provided nearly $60 million for research over 12 years. In 2007 alone Autism Speaks provided $30 million. Generation Rescue can afford to buy advertizing space in newspapers at $100,000 a time. In contrast Autism Speaks’ advertizing campaign attracted donated media worth $81million! It is working with federal agencies like the CDC and NIH. It has lobbied hard to get autism bills through Congress. It has expanded its Autism Treatment Network and has begun funding services for families including an online directory of resources. In addition to the wealthy sponsors who gave $16 million in 2007 it has also developed its local fund raising base with over 300,000 volunteers, mainly participants in sponsored walks for autism.
CONTROVERSY
Autism Speaks’ history is surprising for a number of reasons. Bob Wright has a consistent policy to uncover the cause(s), prevention, treatments and cure for autism. But he has managed by and large to avoid involvement with the biomedical movement of autism treatment and its increasingly strident anti-vaccine stance. This is despite the fact that his daughter is heavily involved with anti vaccine groups Safe Minds and NAA and has been critical of Autism Speaks on some of the vaccine/autism groups on the internet. Whatever his personal views on vaccines Autism Speaks remains firmly wedded to mainstream science. (There is evidence to suggest that Bob Wright is at best equivocal on the subject. See his response to anti vaccine sentiments at a public meeting in London)
Autism Speaks has grown despite its lack of theoretical coherence. It uses the rhetoric of the “autism epidemic” and refers to autism as a “global health crisis” in order to generate a sense of urgency and drive its fundraising. It attempts to appease the anti vaccine camp with a policy statement that supports more research into vaccine safety. But the scientific priorities of its merged partners, CAN and NAAR are biological rather than biomedical. They stress genetic research and tissue banks. These priorities are reflected in Autism Speaks budget allocations and, as epitomized by Katie Wright, have guaranteed the deep hostility of the biomedical/anti vaccine movement.
At the same time their slick fundraising techniques have alienated some mainstream autism groups whose efforts to raise funds for use in the local community have been udermined by hostile tactics from Autism Speaks including organizing competing events for the same charity dollars.
And finally, Autism Speaks’ commitment to treatment, prevention and cure has done nothing to endear it to the community of autistic adults and to parents and researchers who are moving towards the ideas of autism acceptance and neurodiversity. These ideas provide an alternative to the medical model of autism that Autism Speaks has adopted. But apart from the aforementioned public meeting in London Autism Speaks shows no sign of engaging seriously with this alternative view.
BIG AUTISM
Autism Speaks is the corporate face of autism. It is effectively Big Autism in the USA and it is seeking to expand overseas. But there is an unresolved contradiction at its heart. It is driven by Bob Wright’s determination to find a cure for his grandson. This hope for a cure has brought a significant section of the autism community on board. And Bob Wright is using this support to raise awareness and money to fund the scientific research to bring him the answers he wants. The high profile ad. campaigns, the headline grabbing fund raising spectaculars and Bob Wright’s hands on approach to running Autism Speaks all put pressure on the scientists at Autism Speaks to deliver. But what if the scientists cannot deliver? What if the critics of the medical model are nearer to the truth about autism? Does the business ethic that drives Autism Speaks allow for a rethink of their strategy and a new direction?
I hope so. If Autism Speaks can accommodate the sort of debates about acceptance and inclusion that have strengthened the National Autistic Society and led directly to its “Think Differently About Autism” campaign, then maybe it can change the face of autism advocacy in America. The changes in the NAS arose from the activity of autistic activists and their allies within the organization. If Autism Speaks continues to exlude such people and with them all possibility of internal debate it will be contributing to its own eventual demise. Until then, whatever the results of the science it is funding, as a corporate entity it remains a potent source of harmful propaganda about autism.
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 themselvesand 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.
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.
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)
… 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.
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.
“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.
I am Mike Stanton. I live and work in the UK where I teach children with severe learning difficulties, many of whom are autistic. My adult son is diagnosed with Asperger Syndrome. I am a member of the National Autistic Society. I speak and write on autism.
My book, “Learning to Live with High Functioning Autism” is available in a Spanish translation, Convivir con el Autismo. I have also contributed a chapter to Asperger Syndrome in Adolescence edited by Liane Holliday Willey.
ACTION FOR AUTISM is a reaction against names like Action Against Autism and Defeat Autism Now! Names like these suggest to autistic people that we are against them as people. You may not mean that. But if you care about autism you ought to care about the feelings of autistic people and not use language that makes them angry or upset. If you disregard the feelings of autistic people do not be surprised if you are disregarded.
