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
Like many of you I wrote to Gary Day at Action for Children about the Story of Dan ad campaign. Because some of you had already shared your replies I pointed out that I was not interested in their stock response. So they replied with … a stock response. My letter first
Dear Mr Day,
I am writing to express my concerns about the campaign materials featuring Dan, a young man with Aspergers Syndrome. I know from your reply to my colleague Harry Williams that you feel justified in using Dan’s words and drawings to illustrate his difficulties. But in so doing you are reinforcing stereotypical attitudes to autism that are damaging in the extreme.
Dan has learned to see his autism as a monster that consumed him and caused him to behave in unacceptable ways. It is his fault he reacts badly to people who bully and tease him. It is the autism to blame for him being sent away to school. The staff taught him to correct the error of his ways and thanks to them he is a better person.
This may be how Dan sees the situation but the TV ad suggests that this is how Action For Children see it as well. And this is the message that is going out to the general public. Autism makes children behave badly. It is a monster that is taking our children. Action for Children will help your child to trample its autism under foot and become a better person. That is the message that autistic adults and the parents of autistic children are taking from your advert and we reject it utterly.
When I visited your website I was perturbed to read “”Today Headlands – as it is now known – is a very special place. It is a residential and day school for children with emotional and behavioural difficulties, like autism.” I have been a teacher in special education for 25 years. I can assure you that children with emotional and behavioural difficulties and autistic children are different. The former have had damaging life experiences that cause their problems. The latter are born with a neurological difference that affects the way they process information.
Then I went to “Meet Dan.”
Slide 2 reveals very low self esteem.
“I was loud and obnoxious and generally bad tempered”
Slide 3 describes his fear.
“I was just afraid of what was out there, afraid one day that I’d leave my parents and not be able to survive or anything like that.”
Slide 4 has more self loathing
“I wasn’t a great brother or son.”
Slide 5 The transition to Headlands was not well managed.
“I felt hurt. I felt betrayed by being left there.”
Slide 6 Dan was really miserable.
“I thought no-one really cared. I sat alone in my room alone and just … I was really upset.”
Slide 7 The misery continues
“after a few months, a year of being there I got a bit steadier.” A year?!
Slide 8 Things get better when Dan learns that his problems are his lack of respect and his lack of honesty.
“People have said that Dan you are a lot more respectful, you have been a lot more honest and people have given me their trust.”
Slide 9 Dan expresses his gratitude to his carers and teacher.
Slide 10 Dan expresses his new found confidence, describes his skills and his sense of peace.
For all I know you have done a great job with Dan. You have taught him that because he is autistic he sees the world differently from the neurotypical majority; that their lack of understanding is the root of his problems. But by understanding himself and learning to make allowances for their lack of understanding he can avoid unnecessary confrontations. You have boosted his self esteem by identifying his strengths and giving him success. This gives him a secure base from which to tackle the real problems that he has and also gives him confidence to face the future.
But the evidence of your campaign suggests that you have taken a desperately unhappy, fearful child and taught him that all his problems were internal to himself and that it is up to him to change. Compliance brings its own reward. This may not be your intention, but it is what many of us in the autism community are taking from your campaign.
I note that you have invited people to express their concerns by complaining to the Advertising Standards Authority. I have no interest in seeing a dodgy advert pulled if the attitudes that inform that campaign and, presumably, inform the practise of Action for Children in relation to the care and education of autistic children, continue unchanged. I would much prefer to contibute to a dialogue that contributes to a better understanding of the needs of autistic people.
I am, as previously mentioned, a special needs teacher of 25 years experience. I teach in an all age school for pupils with severe learning difficulties. For 23 years I have parented a son with Aspergers syndrom. I am active in the National Autistic Society. I write and speak on autism and maintain a blog, Action for Autism, which is accessible via my sig file below.
Their stock response
Thank you for your email and for raising your concerns over our recent television advert. I am sorry to hear the content of this advert has caused you offence or upset.
Action for Children’s three new adverts focus on how the charity helps to transform the lives of the most vulnerable children throughout the UK. For 140 years we have been committed to children and young people being at the centre of all our work. Therefore these new adverts tell real stories of young people, told by them, in their own words.In our second advert, Dan chose to name his condition and approved the concept and drawings. These pictures depict how he saw himself and what he felt he needed help with before Action for Children helped Dan and his family for a number of years.Action for Children helped Dan gain control over aspects of his behaviour - this was about helping him feel more at peace with himself, as he states in the advert, and clearly his autism is an intrinsic part of himself. The animation in the advert is a representation of Dan’s own individual feelings of anger and frustration, not of autism.
Action for Children is a major provider of services for disabled children,including some with autism, We have other significant areas of work as well, and are a leading charity working with over 178,000 of the most vulnerable children, young people and their family members.
The advert will be running until the 15th February. If you would like to further your complaint or concernsabout our advertisements then you can do this by contacting the Advertising Standards Authority at www.asa.org.ukThey will look in to your complaint and if your concerns are upheld then we will be instructed to change or remove the advertising.
I wonder if they even read my letter. For the record I am neither upset nor offended by the ad. I am concerned that it perpetuates a stereotypical image of autism that, with its monster imagery, harks back to myths of changelings and demonic possession. These myths still resonate powerfully throughout society to reinforce the new mythology of children trapped inside their autism (There’s a Boy Inside) or stolen. When Suzanne Wright of Autism Speaks says;
here is a beautiful little boy in my family who has been kidnapped by autism … and we are going to get him back.
there is a direct connection to the short lived Ransom Notes campaign. Then NYU’s response to criticism was to issue a form letter. Action for Children repeat the same theme with minor variations on ording. I find the invitation to complain to the ASA significant, along with the fact that complaints are being dealt with by “Supporter Care.”
Action for Children is a charity. It does things for children and often it does them very well. It knows what it is doing and needs no advice from any of us thank you very much. It just wants our money so it can carry on doing good things for children. Hence the advertizing campaign. Those of us who complain are characterized as being upset by the shocking reality it presents to us. But it has no interest in engaging in dialogue. If the ASA decides it was wrong to offend us with its ad the ad will be withdrawn. Never mind that by the time the ASA delivers its judgement the campaign will be over.
But that is no good to me. How many more Dans are being taught to trample on their autism monster in order to become a better person? I am going to persevere with my attempts at dialogue with Action for Children and try to change their minds about autism.
However, if you are going to complain to the ASA, the Let’s stop “Action for Children” from demonising autistic children camqign on Face Book has an excellent discussion on how to do it.
I am still curious as to whom Mady Hornig and Ian Lipkin consulted in the “autism parent/advocacy community” before carrying out their recent study that found no association between the MMR vaccine and Autism and no association between the MMR vaccine and GI disorders. So I wrote to the press officer.
Your press release entitled “Study Firmly Shows No Connection Between Measles, Mumps, Rubella (MMR) Vaccine And Autism” quotes Professor Lipkin as saying,
“The study design process was a critical piece for us, as there is still so much public concern over the safety of the MMR vaccine. For this reason, we involved the autism parent/advocacy community as we designed the study to ensure that all issues were being addressed. We are hopeful that this process of community engagement will build important partnerships among members of the autism community, physicians, public health agencies, and clinical researchers; serve as a paradigm for the conduct of future studies to understand the causes of this disorder; and facilitate the rapid communication of clinically relevant scientific findings to the broader community.”
I note that many of the parent advocacy groups like NAA and Safe Minds are openly critical of the paper and wonder which advocacy groups did you consult? I am a member of the Autism Hub, a community of bloggers that broadly welcomes the results of this study. We include parent advocates, professionals and autistic people. We support evidence based medicine and uphold the values of scientific enquiry. We oppose the pseudoscience and quackery that infests many of the parent advocacy groups. There is no compelling evidence for an autism epidemic, vaccine induced or otherwise. There is no evidence for the efficacy of the biomedical “cures” being touted to parents groups.
We are trying to get the research community to understand that these people - TACA, NAA, Generation Rescue, Safe Minds etc. do not represent the views of most parents. Celebrity endorsement from people like Jenny McCarthy has helped to give them a disproportionate presence in the media that belies their actual importance. To this end some of our members recently took part in a panel discussion at the University of San Diego and I am presenting a poster on our activities at the upcoming International Conference in London organized by the National Autistic Society. We would welcome a dialogue with the research community that helps to place the needs expressed by autistic people and their supporters at the heart of the research agenda.
The Autism Hub is not really an organization. We are more like the expression of an idea. I suspect that our greatest strength, our diversity, is also potentially our greatest stumbling block when it comes to building an organization. But there is a need for organizations that embody the principles of the Autism Hub, if only to give the lie to the claims of the anti-vaccine parents that they represent the autism community. They are invited to sit on the Interagency Autism Coordinating Committee. They are consulted about the the design of academic studies. They have ready access to the media. This is not because they are popular. They do not enjoy mass support. After all no more than 2000 people attended their Green Our Vaccines Rally in Washington. The latest figures confirm that less than one per cent of US children are unvaccinated. But they are organized.
I know that there is a tradition of self organization within autism. The Autistic Self Advocacy Network and Autism Network International are prime examples. The only drawback with such organizations is that it is hard for them to organize children. And while I may be convinced that the best advocates for autistic children are autistic adults our present culture does privilege parents in this respect.
The anti-vaccine parents are vocal and committed. They have no qualms about claiming to represent the autism community. But autism hub parents are constrained from challenging them because we would feel uneasy about claiming to represent “our children” if it meant disenfranchising all the autistic adults who would much rather speak for themselves, thank you very much.
The answer is to build an organization of parents and autistics. It may not be easy. Parents and adults do have differing agendas. Potential sources of disagreement include questions like:
Is autism a disability or a difference? Can it be both?
Is our agenda the same for all autistics regardless of their potential for independent living?
Autistic adults need accommodations more than interventions. But is the same true for children?
I think we need an Alliance for Autism that reflects our diversity. It would work like this.
We should not try to resolve all our differences in advance and create a perfect organization with no internal conflicts.
Otherwise we would be forever involved in meetings about meetings and looking deep into theoretical discussions. Meanwhile nothing happens.
We should not ignore our differences and pretend we are all united by tacitly sweeping all our differences under the carpet.
This would just lead to us adopting meaningless forms of words that tried to paper over the cracks in our campaign. I am sure that McCain and Obama will provide us with plenty of examples of this in the months ahead!
We should be able to acknowledge our differences and agree to disagree on any number of issues providing we can come together on those issues that do unite us.
As an old time socialist my favourite analogy is the picket line. There can be all sorts of debates and disagreements expressed until the strike breakers make an appearance. Then you suspend your debate and link arms to see off the threat.
I would like to see an organization develop along these lines to counter the influence of “the usual suspects” in Safe Minds, NAA et al. and get our voices heard in the media and at the conference table. How about it?
POSTSCRIPT
Prior to posting this I consulted with friends in the autism community. They raised some important concerns which I hope I have accurately summarized thus and I append my responses thus. (NB I a not reprinting email exchanges on my blog. I am reporting on what I took away from these discussions and how they have influenced my thinking.)
Do we really need another parent founded, parent led organization. Shouldn’t we be allying with and empowering existing organizations like the Autistic Self Advocacy Network which are founded and led by autistic persons?
The reason why I am proposing the alliance, as opposed to developing an existing organization like ASAN goes back to my experience as an anti-racist activist in the 1970s when we were concerned about the growth of the far right in the UK.There were anti-racist and anti fascist groups out there but none of us had mass appeal and just bringing us together was difficult because of all the ideological baggage different groups brought to the table.
The solution was the Anti Nazi League. We came together around a single aim - to expose the far right as the Hitler loving nazis they really were. We did not ditch our ideological differences. We did agree that they were not relevant at that moment in time to the specific task of the ANL. The result was a broadbased movement that went far beyond the collective reach and appeal of the original activists who set it up.
Translating that to today and building an alliance for autism I would want it to be able to attract and speak for parents who want evidence based therapies for their children and may even believe they want a cure but are horrified at the anti-science, anti-vaccine stance of McJenny & Coy. and the untested “cures” they inflict upon their children.
Such an alliance need not be parent led but I think it needs to be parent focused. Existing advocacy organizations like ASAN may well prove to be the organizational force behind the alliance. But the aim would be to bring parents on board in a form that governments can recognize and incorporate in structures like IACC at the expense of the existing “autism parent/advocacy community” who are hogging the limelight right now.
An anti anti-vacine organization may be necessary but it is not the same as an Alliance for Autism. A real alliance for autism is defined by what it supports, not by what it opposes.
I agree. To continue with my analogy from my days in the ANL, we were fortunate that a parallel organization - Rock Against Racism - arose at around the same time. They emphasized the black origins of most popular music and organized concerts and music festivals under the positive banner of “Love Music Hate Racism.” Both organizations enjoyed a symbiotic relationship for a crucial time when they supported each other and both were strengthened.
Translating this experience to the autism community I suggest that we build the bits we need and then see how they fit together. Some people will be building the ”anti” bits. Others will be building the positive bits. and we will find an accommodation with each other.
The vaccine issue is a blip of no lasting importance. The real battle will centre upon the myth of “normalization” to make autistic people “indistinguishable from their peers” and the potential for eugenic “solutions” to autism implicit in the current search for genetic markers for autism.
Again, I agree. But right now this”blip” looms large on the horizon and children are suffering as a direct consequence. We have to take it out. In doing so our natural allies are in the scientific community. I agree that long term, the really important argument will be between us and the scientific community about concepts of disease, disorder and the social model of disability. That is one reason why I have sought and gained appointment to the lay consultative panel of the Human Genetics Commission which exercises ethical oversight of the general trends in genetic research in the UK.
We should be positive about autism. Parents are excited by the ideas of neurodiversity. But such an alliance has to be led by autistics.
Yes, absolutely! But we have to acknowledge that most parents do not begin by feeling positive about autism and excited by neurodiversity. Most parents begin by being wide open to anyone who promises a cure.
And those parents who do learn to accept autism and make the best of it do not see themselves primarily as supporters of self advocacy for autistic individuals. They see themselves as central to advocating for their children and look, in the first instance, for allies amongst similar parents. They take a long time to realise that their children are going to become adults with autism. I use that form of words deliberately instead of autistic adults because I see this phenomenon with parents of all sorts of children, autistic and otherwise at my school. The key point is that, more than most parents, the parents of any child with a disability are inclined to see their child as first and foremost a child, and resist the idea that they will be an adult one day. Once they accept the inevitablity of their offspring leaving the nest they become more open to ideas about self advocacy and human rights issues for disabled adults.
In other words parents do not automatically see themselves as being on the same side as autistic adults. They are totally committed on the side of their children. If we suggest that they sign up as parent auxiliaries in support of a generic autistic rights movement this will strike them as patronizing. I think that mutuality rather than auxiliarity (is that a word?) best captures my understanding of the way forward.
The bottom line is that parents have legally enforcable rights and responsibilities in relation to their children. The fact that some parents abuse their rights and ignore their responsibilities should not detract from my basic premise that parents are de facto the primary advocates for their children. Hence we need an alliance in which neither parents nor autistic adults are subordinate or auxiliary to each other.
This is where I am at the moment. It could be that I am wrong. But I think a public debate about where we go from here is the best way forward. I know that clown blogs and hate blogs will mock us.But what else is new? We are a vast community and they are a pimple on the arsehole of humanity. It is time for us to set our own agenda and use our best endeavours to make it so.
Many thanks to Steve and Bev for an excellent performance on behalf of the Autism Hub when they appeared on These Days, a talk show with an audience of tens of thousands in the San Diego area. You can download the interview here. They were being interviewed because both are speaking at the University of San Diego’s Summer Autism Institute entitled Autism; Work With Me, Not On Me.
“Blogging and Autism: The role of the internet in today’s autism community.”
And Estee has her own slot as well:
The Mismeasure of Autism: The basis of current autism “advocacy”
I wish I could have been there. But i am looking forward to reading all about it on their blogs when they return.
Steve asked us to showcase our favourite blogs in case newcomers turn up to see what all the fuss is about. I am reposting an article wrote on Neurodiversity because it sums up a lot of my feelings about autism.
What is Neurodiversity?
What is Neurodiversity? By Mike Stanton
When I attended the International Autism Conference in London last year I heard Professor David Amaral tell the story of a young man with Asperger Syndrome who was visiting the MIND Institute at UC Davis. He was asked what he would do if they could develop a pill for autism. He thought for a while before replying that he would take half the pill.
I think this illustrates a real difference within the autism community. There are many who pathologize autism as a disorder that afflicts an otherwise healthy individual. If you hold this idea you naturally look to understand the causes of autism in order to find that “autism pill.”
The idea of Neurodiversity was developed by autistic people in opposition to the pathologizing model. According to them autistic people are not disordered. They have a different sort of order. Their brains are differently wired. They think differently. They do not want to be cured. They want to be understood.
This is not to deny that autistic people often face real difficulties. That is why the young man at the MIND Institute told David Amaral that he would take half the pill, but not the whole pill.
What does Neurodiversity mean for parents?
The cure mentality places great pressure on parents to rush into interventions. Then there is the guilt. Was there something I did or didn’t do that caused the autism in my child? Can I put it right.? How can I not put it right? Instead of raising your child you can spend all your time trying to fix him. One mother’s story illustrates this.
Olivia was four when Liz finally faced up to the diagnosis, wracked with guilt that, having given birth to her at the age of 42, she was somehow responsible for her child’s problems, either directly or as a result of a pre-natal diagnostic test (amniocentesis) that went wrong.
Her way of dealing with this lonely burden was to take action. “I wanted to rip the autism out of Olivia with my bare hands,” she says. In the years that followed, she whirled her daughter from one therapist to another, trying everything from cranial osteopathy and “brushing” her nerve endings, to Portage - a method of teaching everything in tiny steps.
[…]
“Every practitioner is convinced that his or her treatment is the one and you feel compelled to try everything to find the one that will open up your child. I have seen children who have made remarkable improvements, but I would never say they have been cured or recovered.”
[…]
Having reached a state of mind where, even if she could, she would not change Olivia, she tries to concentrate on the good qualities that come with autism - honesty, uncompetitiveness, absence of spite.
Embracing Neurodiversity allows you to stop looking for a cure because there isn’t one. I agree with the Autism Society of America that,
Most of the enlightened world knows that autism is at its root, genetic, and therefore by definition it is not something that can be considered “curable” or a “disease.”
Giving up on a cure is not the same as giving up on your child. In fact it can help you to take a more balanced approach. It is easier to reflect on your child’s strengths as well as their difficulties and take up Lorna Wing’s advice that,
an autistic child can only be helped if a serious attempt is made to see the world from his point of view.
Sometimes our biggest problem lies with other people. One mother gave me permission to quote something she wrote in an email about autism and acceptance.
I think that it’s a bit insulting sometimes for people, especially family and friends, to try to give me information about how to make my son be a ‘bit less autistic’. It makes me think they want a short-cut to make him more acceptable. I’d prefer it if they tried to connect with him and enjoy him as he is. Then they’d really be able to help him to progress.
This is the essence of Neurodiversity. First accept the difference. Then find ways to work together. And it is not all about problems either. We all had a favourite subject at school that we were good at and something else we really struggled with. Imagine being told that you had to drop your best subject and have double lessons in your worst subject.
That is not so far from the experience of lots of autistic children whose interests and talents are sidelined while we concentrate on their difficulties. This can send all the wrong messages to our kids. They learn about their limitations but rarely get the chance to achieve. So they put up barriers to protect what is left of their self esteem. You try and offer constructive criticism. They take it as a mortal insult.
If we accept somebody and work with their strengths we can help them to find ways of dealing with their problems that work for them. I spent a lot of time trying to solve my son’s problems and making choices for him. The turning point came when Dave, a clinical psychologist asked him to think about what he wanted. Prior to this my son had always been encouraged to meet other people’s demands and expectations. Dave was the first person to give my son explicit permission to put his desires before our expectations.
When does Neurodiversity give way to disability?
It is a common mistake to believe that neurodiversity is only for people who are “high functioning” or are “mildly autistic” or any other synonym for “not my child.” The argument goes that neurodiversity is all right for you. You can talk. You can write. You are intelligent. My kid is non-verbal, self-injures and needs constant care.
There is a whole set of problems that comes with being high functioning. People expect you to be normal or at least to act normal. So you expend a lot of mental energy pretending to be normal which leaves you wide open to stress related problems like depression, obsessive compulsive disorder and social anxiety disorder. You may be paralyzed by panic attacks or have uncontrollable bouts of anger. This can get you in trouble with the law or trapped in the psychiatric system. Being high functioning is not a soft option.
Does the demand for tolerance and understanding mean ignoring children in distress, doing nothing about autism, denying the need for scientific research? Of course not. We support the need for decent peer reviewed research into the problems associated with autism. It is by no means clear what constitutes the core features that are fundamental to autism, and what are secondary factors. We just do not see any justification for seeing all a child’s problems as being down to its autism and imagining that there is a magic bullet to solve them all.
Who will speak for my child?
This is a real concern, especially for parents of children who are highly dependent on others. But we are all mortal and when we die who will speak for our children then? Neurodiversity is a way of thinking about human difference that has the potential to change the world for autistic people in ways that are comparable to the impact of the liberation movements for women, blacks and gays. When society speaks for my child, then I can die happy.
The National Autistic Society in the UK recently changed its constitution. We are no longer a parent led organization. Previously there had to be a majority of parents elected to our National Council. Now there has to be a majority of family members - parents, siblings and people with autism. Many parents of severely autistic children were worried that this dilution of control would weaken their voice as the only effective advocates for their children. Some were worried that high functioning autistics would take over the NAS and their children would be forgotten.
I pointed out at the AGM that in my experience autistic people who were willing and able to campaign and hold office were concerned for the rights of all autistic people. They take Neurodiversity seriously and value everyone on the autistic spectrum. The parents of children with Asperger Syndrome were far more likely to push the NAS down the path of providing mainstream support for their children at the expense of those who needed more expensive care and protection.
Neurodiversity, like freedom, is indivisible. And its benefits are being seen within the NAS as the professionals in our care homes and schools strive to create mechanisms whereby all autistic people within our structures are able to self-advocate, make choices and exercise personal autonomy.
What does Neurodiversity mean for professionals?
By listening to autistic adults I have changed my practise in relation to the autistic children with severe learning difficulties in the special school where I teach. I no longer expect eye contact. Instead of demanding, “Look at me when I am talking to you!” I ask, “Are you listening?” When I speak to a child I give them extra time to process my words and formulate a response. If someone is acting strangely, instead of stepping in to prevent the behaviour I ask myself, “Why is he doing that?”
OK I am only human. sometimes I have bad days. I make mistakes. I mess up. So do the kids in my class. They make allowances for me. I make allowances for them. Some people do not get it. They think I am “letting them get away with it.” Yes, like they are being autistic on purpose.
The most important thing a professional can do is to help a person understand and accept that they are autistic and then decide what they are going to do about it. A lot of autistic people spend a lot of time trying to change themselves to fit in with the world as it is. It is important for autistic people to learn how to get by in this world. But they will not do that if we try to manage the way they think. I often say that we should not teach autistic people to manage their behaviour. we should teach them to manage ours. And between us we may make the world a bit more manageable for all of us. What does Neurodiversity mean for autistic people?
I am a parent and a professional. I am not autistic and therefore would not presume to speak for autistic people. There are many who can speak for themselves. You can find a really good sample at the Autism Hub, a place where autistic people, parents and professionals meet with no distinction and anyone is welcome providing you share our respect for the condition of being autistic. We seek no fundamental alteration to this state of being but we do seek to intervene sometimes should the situation require it. And when we do intervene we should remember the words of a very wise person with autism, my son.
My autism is not a problem. It creates problems. But it is not going to go away. I want help with my problems not with who I am. I want you to offer support but do not try and change me into someone else.
His reply is basically that “a mere mother and housewife” could not possibly have written Neurodiversity.com on her own. She must have been prompted by malice and given material aid by the drug companies to pursue a campaign of intimidation against Clifford Shoemaker, his clients and his pet witness, Mark Geier. It is alleged that Kathleen is part of a conspiracy to protect the drug companies from the legitimate claims of parents of vaccine damaged children. As Kathleen says in her latest entry, Welcome to My Conspiracy
These documents offer a remarkable exposition of the grandiose, cartoonish conspiracy fantasies entertained by advocates of the concept of autism as toxicity and tort, and the arguments of those who seek to justify the perversion of legal processes in order to oppress their critics.
CONFLICT OF INTEREST
Imagine if a piece of research exonerating vaccines was put forward by a drug company employee whose husband was working for the defense team at the vaccine court. The parents who claim that their autistic children are vaccine damaged would quite rightly be appalled if such a potential conflict of interest was concealed. This weekend three pieces of research were presented at the International Meeting for Autism Research (IMFAR) in London. All were co-authored by Dr Hewitson, all seek to demonstrate a link between vaccines and autism and the science has already been severely critiqued by Orac.
But there is more. Over on LeftBrain/RightBrain Kev has revealed that Dr Hewitson has her own potential conflicts of interest.
She and her husband have an autistic child and are pursuing a claim for vaccine injury.
Her husband is employed by one of her co-authors, Andrew Wakefield at Thoughtful House.
She is affiliated to Defeat Autism Now.
This does not necessarily invalidate her work. But one wonders why Dan Olmsted, who is singing her praises over on The Age of Autism, neglected to include these details in his piece. Did he know? Did IMFAR know when they accepted her presentations? Of course it could just be another part of Kathleen Seidel’s conspiracy against anti-vaccine campaigners.
THE BIGGER PICTURE
It is important to scrutinize the claims of DANites, anti-vaxxers and their friends in the media. But in the wider world of autism there are more serious questions to engage with that pertain to the mainstream research and medical communities who exercise so much more influence over the world of autism than those on the pseudo-scientific fringe.
Is it right to refer to autistic people and “healthy” controls in a scientific presentation? How far are we justified in questioning the assumptions and methodology behind a lot of autism research? Under what circumstances, if any, is the medical model capable of yielding useful results? Who is paying attention to the ethical dimensions surrounding informed consent from autistic research subjects?
Larry Arnold, an autistic person who is also an autism researcher and a member of the board of trustees of the National Autistic Society raises these and similar questions in his initial reflections on IMFAR. After the tiresome but necessary task, so ably done by Kev, Orac and Kathleen, of dealing with some of autism’s stinkers it is good to be able to turn to an autism thinker like Larry.
To follow on from yesterday’s post on the JRC, it sems that while it may be legal under Massachussetts State Law to detain people against their will and torture them with electric shocks, it is illegal to record their screams without their express consent. This email explains it all. It sounds petty compared to the daily misery endured by the inmates at JRC. But, hey, whatever helps to close them down. Please respond directly to Ken Mollins if you have any information pertaining to this or to the grand jury investigation of abuses at the Judge Rotenberg Center.
Dear fellow advocates:
This latest letter from Attorney Kenneth Mollins exposes the illegal practice of recording all conversations at the Judge Rotenberg Educational Center in violation of Massachusetts State Law.
Please forward this letter to others and post on lists. Permission is granted by Kenneth Mollins.
If any readers have had their privacy violated at JRC you may want to contact Kenneth Mollins, or myself and I will forward your information to Ken. Perhaps this can be a concerted effort. You may also want to address your own personal letter to Attorney General Martha Coakley if you have been violated in this manner, or if you are aware of other criminal matters at JRC.
Thank you, for your active advocacy. Please remember that change can only occur if we take action! Our silence is only golden for Dr. Israel.
May 16, 2008
Via Facsimile (508)795-1991
Attorney General Martha Coakley
One Exchange Place, 3rd Floor
Worcester, MA 01608
Re: Judge Rotenberg Center
Dear Attorney General Coakley:
I am writing concerning ongoing apparent criminal activity that is occurring on a daily basis at the Judge Rotenberg Center (“JRC”) in Canton, Massachusetts, and where numerous people are being subjected to said criminal activities on a daily basis. Mass. Ann. Laws ch. 272, §99 states:
It is a crime to record any conversation, whether oral or wire, without the consent of all parties in Massachusetts…
I have spoken with numerous prior employees of the JRC who all advise me that the entire school and residences are subject to the recording of conversations taken therein. These recordings not only apply to the students and faculty, but to the mailman, the person who delivers lunch, and to any other person entering the facility, all of whom are being recorded and replayed without their consent. I was in the facility back in early 2006 to meet with a client, and thereafter I was advised by both staff and parents of students in the facility that my conversations were recorded without my consent. In addition, I have spoken with others who have been in the facility without consenting to their conversations being recorded.
The criminality described herein is made worse by an examination of the release signed by the parents of students attending this center. I am enclosing herewith a copy of the applicable portion of the release which is the same release signed from 2003 to the present, the section enumerated as “H. Filming/Photographs.” The fact that audio taping and recordings are made during therapy sessions is expressed, but in the paragraph consenting to same, the audio portion is specifically deleted, and the consent goes to video taping and/or photograph of the student. This omission specifically vitiates any consent by the parent of any student or parent from September 2003 to the present. As such, I believe there are thousands of victims of criminality in violation of the aforestated section, of which I am one. In addition, in speaking with March Network, the company that does the video surveillance at JRC, they have also advised me that all conversations that take place in said center are recorded.
I ask that you immediately cause this criminality to cease and to prosecute the thousands of alleged criminal acts that appear to have occurred at this center and as a victim I hereby demand that you seek both monetary and criminal sanctions against those for acting in concert to commit a violation of the aforesaid criminal statute.
I am aware that you are currently investigating the JRC and that a grand jury has been convened to investigate criminal acts. It might save the taxpayers of Massachusetts time and expense if you present evidence to a grand jury of the criminal acts revealed herein. I will be happy to testify as well will others I have spoken with concerning same.
Very truly yours,
LAW OFFICE OF KENNETH M. MOLLINS, P.C.
By:
KENNETH M. MOLLINS
KMM/mc
cc: MA Governor Deval L. Patrick
NYS Attorney General, Andrew M. Cuomo
Barbara Wilson, the National Autistic Society Regional Councillor for the South West has had a petition to the Prime Minister accepted by the office of the Prime Minister. UK citiizens can sign the petition on the Prime Minister’s website
The petition reads:
We the undersigned petition the Prime Minister to make it
compulsory for Local Authorities, NHS and Social Care to work
together to produce a strategy with guidelines for Autism /
Asperger syndrome including diagnosis, pathways to services
and criteria that are realistic and address supportive and
lifelong support,rather than waiting for people to fall into
crisis before services respond. Also to create a national data
base of the numbers of people diagnosed as being on the ASD
spectrum.
for people on the Autism/Asperger Spectrum specifically to
address the issues on Fair Access to Care and support that many
consequently fall through the services. Also adopting a clear
pathway to services for adults on the spectrum who currently
are referred to as ‘high functioning’ rather than awaiting
their move into ‘crisis’ To include more preventative and
supportive approach. We need to have a national data base on
the numbers of people affected. Currently services are only
estimating numbers consequently do not see the need for
strategies and specific services.
I am sure this petition will strike a chord with many people in the UK and chime with the experience of autistic people and their families around the world. In the UK we have plenty of good practise guidelines for health, education and social care but very little effort on the part of government to mandate these guidelines or provide adequate funding. Sometimes these guidelines come together and are implemented in the provision of children’s services. Even so,
Over 50% of children are not in the kind of school their parents believe would best support them.
66% of parents said their choice of school was limited by a lack of appropriate placements for children with autism in their local area.
Only 30% of parents of children in mainstream education are satisfied with the level of understanding of autism
across the school.
In mainstream schools only 27% of parents say that all their child’s teachers could adjust their approach and
teaching materials - and therefore meet their legal duties under the SEN and Disability Act (2001).
Special Educational Needs Co-ordinators (SENCOs) are responsible for co-ordinating provision for children with
autism in schools, yet 23% of parents are dissatisfied with SENCOs’ level of understanding of autism.
Over 40% of children with autism have been bullied at school.
45% of parents say it took over a year for their child to receive any support.
There are more appeals to the Special Educational Needs (SEN) and Disability Tribunal in England about
autism than any other type of SEN. 79% of parents who appealed to the Tribunal in this survey won their case.
Parents say the biggest gap in provision is social skills programmes.
1 in 5 children with autism has been excluded from school, and 67% of these have been excluded more than once.
Only 53% of young people aged 14 to 19 years have transition plans, falling to just 34% of students in mainstream schools.
The Makes Schools Make Sense Campaign did make a difference. The government has responded to our concerns and made a number of commitments designed to improve education for autistic children in England. That still leaves the rest of the United Kingdom. But it is a start.
If the situation for children is bad, then for adults it is dire. This year, the Think Differently About Autism Campaign is focusing on adults under the slogan “I exist” Its main points are that,
Nearly two thirds (63%) of adults with autism do not have enough support to meet their needs.
92% of parents are worried about their son or daughter’s future when they are no longer able to care for them.
61% of adults with autism rely on their family financially and 40% live with their parents.
60% of parents believed that a lack of support has led to higher support needs later on.
At least 1 in 3 adults with autism are experiencing severe mental health difficulties due to a lack of support.
Barbara’s petition can only help to focus attention on these problems. Autistic people and their families, along with autism professionals and advocacy organizations spend a lot of time arguing about important issues like causation, cure and the various interventions that are supposed to help autistic people fit in with society. But while we may disagree on how to assist autistic people in coping with society, we should all agree to support Barbara’s petition and campaign to make society better able to understand and cope with autism.
NB. Throughout this blog post I refer to England and link to materials pertaining to NAS campaigns in England. This is a consequence of the different forms of government that pertain throughout the United Kingdom and the way these differences impact upon the provision of services. There are parallel campaigns in Scotland, Northern Ireland and Wales that take account of these differences.
Shock Tactics is yet another detailed account of the abuse carried out on people at the Judge Rotenberg Center. Over half the inmates at this institution are wired to a device called the GED that delivers painful electric shocks at the push of a button. At one time the use of electric shocks on severely disturbed children was given dubious justification by the life threatening severity of their self injurious behaviour. Better GED than dead as it were. The reporter, Jennifer Gonnerman, gives credence to this when she writes:
Before we set off on our tour of the institution, there’s something Israel wants me to see: Before & After, a home-made movie featuring six of his most severe cases. He has been using some of the same grainy footage for more than two decades, showing it to parents of prospective students as well as reporters. It shows how in 1977, an 11-year-old girl, Caroline, arrives at the school strapped on a stretcher, her head encased in a helmet. Next, free from restraints, she tries to smash her helmeted head against the floor. In 1981 it shows Janine, also 11, who shrieks and slams her head against the ground, a table, the door. Bald spots testify to the severity of her troubles; she’s yanked out so much hair it’s half gone. Compared with these scenes, the “after” footage looks almost unbelievable: Janine splashes in a pool; Caroline grins as she sits in a chair at a beauty salon.
“These are children for whom positive-only procedures did not work, drugs did not work,” says Israel. “And if it wasn’t for this treatment, some of these people would not be alive.” The video is very persuasive: the girls’ self-abuse is so violent and so frightening it almost makes me want to grab a GED remote and push the button myself. Of course, this is precisely the point.
Then she meets two of these “success stories. ”
Considering how compelling the after footage is, I am surprised to learn that five of the six children featured in it are still here. “This is Caroline,” one of my escorts says later as we walk down a corridor. Without an introduction, I would not have known. Caroline, 39, slumps forward in a wheelchair, her fists balled up, head covered by a red helmet. “Blow me a kiss, Caroline,” Israel says. She doesn’t respond.
A few minutes later, I meet 36-year-old Janine, who appears in much better shape. She’s not wearing a helmet and has a full head of black hair. She’s also got a backpack on her shoulders and canvas straps hanging from her legs, the telltale sign that electrodes are attached to both calves. For 16 years – nearly half her life – Janine has been hooked up to Israel’s shock device. A few years ago, when the shocks began to lose their effect, the staff switched the devices inside her backpack to the much more painful GED-4.
The Judge Rotenberg Center no longer restricts itself to severely handicapped children who self harm. More “high functioning” individuals with a range of difficulties including ADHD and Bipolar Disorder get the same electric shock ”treatment” for the most trivial “offences” like getting out their seat without permission.
Matthew Israel, the director and founder of the JRC claims to be a behaviourist in the tradition of B. F. Skinner, under whom he studied in the 1950s. He took up the idea of using electric shock from fellow behaviourist Ivor Lovaas. Lovaas no longer uses electric shocks because:
“These people are so used to pain that they can adapt to almost any kind of aversive you give them.”
Israel met the same difficulty. His answer was to turn up the power and use even more painful devices. What I want to know is how long are we going to put up with college educated professors telling us it OK to inflict pain on the most helpless and vulnerable people in society? Even Dr Bernard of the Maudsley Hospital in London is quoted in the article as saying,
It’s terrible to use something like that without clear evidence to show it works.
There have been attempts to close the JRC. But Israel has always relied on the tesimonials of satisfied parents, motivated by the fear that if JRC closes there is nowhere else for their children. It seems that the only criteria for admission is that you have been written off and rejected by everyone else. Once inside your fate is forgotten.
What I find most inexplicable is the support for JRC by ex inmates. Stockholm Syndrome maybe? This is Katie Spartichino:
Katie, 19, tells me she overdosed on pills at nine, spent her early adolescence in and out of psychiatric wards, was hooked up to the GED at 16, and stayed on the device for two years. “This is a great place,” she says. “It took me off all my medicine. I was close to 200lb and I’m 160 now.” But when she first had to wear the electrodes, she says: “I cried. I kind of felt like I was walking on eggshells; I had to watch everything I said. Sometimes a curse word would just come out of my mouth. So being on the GEDs and knowing that swearing was a targeted behaviour where I’d receive a [GED] application, it really got me to think twice before I said something rude.”
The most chilling part of the whole story is one of apparent tenderness.
As Katie speaks, LaChance runs her fingers through Katie’s hair again and again. The gesture is so deliberate it draws my attention. I wonder if it’s just an expression of affection – or something more, like a reward.
To me, LaChance’s action screams of an abusive relationship, Katie allowing herself to be treated like a child by someone who probably inflicted pain on her in the past. And when Katie admits that she sometimes still swears
The hair-stroking stops. LaChance turns to Katie. “I hope you’re not going to tell me you’re aggressive.”
The last time I heard that voice it was Nurse Ratched in One Flew over the Cuckoo’s Nest.
“Oh, no, that’s gone,” Katie says. “No, no, no. The worst thing I do sometimes is me and my mom get into little arguments.”
Poor Katie, still in fear of that voice, still in thrall. And she is one of the lucky ones. She got out.
Derrick Jeffries - Person with Asperger’s Syndrome and Nancy Weiss - Co-Director, The National Leadership Consortium on Developmental Disabilities, Center for Disabilities Studies, University of Delaware have issued
which I was pleased to sign. The letter begins like this:
“This letter is to the American Psychological Association (hereafter referred to as APA), and to all professionals in the field of psychology. This letter calls upon APA and professionals who adhere to the APA Code of Ethics to act in a manner that is ethical and consistent with that Code of Ethics. Two recent APA documents are relevant to this call to action. They are, the 2006 “Resolution Against Torture and Other Cruel, Inhuman, and Degrading Treatment or punishment” (hereafter referred to as 2006 Resolution), and the 2007 “Reaffirmation of the American Psychological Association Position Against Torture and Other Cruel, Inhuman, or Degrading Treatment or Punishment and Its Application to Individuals Defined in the United States Code as “Enemy Combatants”" (hereafter referred to as 2007 Resolution). With fervor, we are advocating for people with autism, developmental differences, and mental health challenges; urgently entreating that they may be given the same respect with regard to human rights as alleged “Enemy Combatants,” or any other human beings. As professionals who adhere to the APA Code of Ethics, nothing less than an unprejudiced stance in this matter should be considered acceptable.
“Currently, children and young adults with autism, developmental differences, and mental health challenges are being treated in a manner that clearly meets the definition of Torture and Other Cruel, Inhuman, and Degrading Treatment or Punishment, as defined by the two previously mentioned APA documents. The Judge Rotenberg Educational Center (hereafter referred to as JRC) in Massachusetts has a long history of using electric shock, food deprivation and prolonged mechanical restraint, as well as other painful and dehumanizing aversive techniques.”
Please go to http://disabledsoapbox.blogspot.com/ to read the letter in full and add your support. Meanwhile, anyone interested in debating with Matthew Israel should visit the Justice, the independent student newspaper of Brandeis University. Nathan Robinson from Brandeis Students United Against The Judge Rotenberg Center has written an opinion piece about the JRC that has provoked responses from Israel and equally vigorous replies from Nathan and others.
This letter was forwarded to the Asperger UK group today with permission of Cris Bolduc, mother of Piers Bolduc. I urge anyone with access to BBC Radio 4 to listen to You and Yours tomorrow. Piers was misdiagnosed as mentally ill and placed on powerful antipsychotic drugs. When he wounded a man while on medication he was sectioned and sent to Broadmoor, the top security prison for the criminally insane, which contains serial killers, mass murderers and sex offenders. While there he was diagnosed with Asperger Syndrome. The Daily Telegraph campaigned for his release and in 2004 he was transferred to the Hayes Unit, the only secure unit specifically run for people with Aspergers Syndrome.
BBC RADIO 4 ‘YOU & YOURS’ this Thursday, 13th September 2007 at 12.04 mid-day.If all goes according to plan the programme we have recorded with the
BBC, on various occassions and locations since May, will be aired
THIS Thursday 13th September on RADIO 4 ‘YOU & YOURS’ at 12.04. Its
all about lack of care/units for adults with Asperger Syndrome and hi-
lites our son Piers’ tragic case.
Apologies in advance if its re-scheduled for sometime the following
week but that is the way it goes in the media! As I write it is still
on course for this Thursday. Although a great deal of recordings were
made, after editing it will be cut down to size so don’t blink or go
and make a coffee or you might miss it! I just feel that ‘every
little helps’ (to borrow a phrase!) not only for us and Piers but
other families struggling within the minefields of flawed placements
and the postal code lottery of accessing support and services.
You should be able to ‘listen again’ by putting: You & Yours listen
again, into your computer’s Google search a few days after it is
aired.
Please excuse the Round Robin but it is the quickest way to alert
everyone!
AllBestCris
Here is the article that celebrated his release from Broadmoor 3 years ago.
Piers Bolduc, 28, was put on powerful drugs which he did not need and held at the hospital for the criminally insane since he was 19, despite not suffering from mental illness or having any convictions. Asperger’s is a mild form of autism which is fundamentally unresponsive to drugs, because it is a condition and not an illness.
He was finally transferred last week to the Hayes Independent Hospital in Bristol, the only facility in Britain that caters specifically for people with Asperger’s. [continue to article]
Who knows how many other autistic people are being misdiagnosed and mistreated within our mental health system. And I know that for many mentally ill people the system is just as bad.
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.
