Autism Diva recently published a blog about Gilles Tréhin and his partner Catherine Mouet. Both are autistic artists.
Giles has created a world called Urville. He has drawn over 200 detailed pictures of the city and written about its History, Geography, Economics and Culture.
He has recently published a book available from Jessica Kingsley.
Catherine's art is totally different. In this one, entitled Ratatouille, she explores all the possible colour combinations based on the four basic ingredients of ratatouille. but you really need to visit her website to appreciate the scope of her project and the range of her talent.
On Saturday, the Guardian published an interview with Gilles and Catherine, and Gilles parents – Chantel and Paul. The interviewer is Charlotte Moore, a talented writer and the mother of two autistic boys who are the subject of her book, George and Sam.
There are lots of delightful nuggets in the interview. Chantel has some good advice for parents everywhere.
"From 15 months, I knew he was different. But both Paul [Gilles' father] and I, even before Gilles' birth, liked people with different minds. So we always tried to see Gilles' good points, and help him make the most of them."
"We have learned not to make plans for him, but to accompany his progress instead of mapping his life." I
Gilles and Catherine are obviously exceptional human beings. But Gilles reminds us that
"There are no people without talents," he says. The talent supported by family and professionals can make inclusion in society a lot easier." He's excited about the benefits to both sides if neurotypicals can learn to accept and celebrate the "differently abled". "It is an historical chance which can make our society become more human."
Charlotte Moore finds that Gilles' altruism is surprising given that autists have difficulty with empathy. This is a common error in NTs who mistake self absorption for selfishness. Why should there be a connection between social cognition and moral values? There are plenty of NTs whose empathic sense is fully functional but who limit their altruism to a select band of family and friends. Charity begins at home as the saying goes. But where should it end?
This is a practical as well as a moral question. This Easter my wife and I spent a glorious day at Brantwood, the home of the great Victorian polymath, John Ruskin. He was so overwhelmed by the needs of the poor and felt that he had to do something. But he could never do enough and this drove him into periodic bouts of madness. But I am wandering now. Let us end with Charlotte Moore's last view of Gilles and Catherine.
When I turned to wave goodbye, they were on the down escalator, flinging their arms round each other, utterly absorbed in mutual delight.
When Dr. Shattuck's paper suggesting that US special education data neither supported nor refuted the premise that there had been an autism epidemic in the USA was published there was a predictable howl of ourage from the autism = mercury poisoning lobby. Safe Minds and the National Autism Association both rushed out press releases denouncing the research and questioning the motives of its author. Numerous blogs picked up on their objections and gave effective answers. See for example Kevin Leitch, Prometheus and Orac.
Then the Autism Society of America issued its response entitled "Study Denouncing Autism Epidemic Misses the Mark" by Kate Ranta.
Now I expect the mercury lobby to put their own spin on anything to do with autism. But the ASA claims to be "the Voice of Autism." We look for authoritative statements from them. So it is with great regret that I have to report that their response to Dr. Shattuck's paper was sadly lacking.
For a start, contrary to the ASA headline, Dr. Shattuck's paper denounced nothing. It stated that special education data neither supported nor refuted the idea of an autism epidemic. It went on to suggest that diagnistic substitution might explain the growth in autism diagnoses in recent years. But it did not rule out the possibility of environmental triggers contributing to the growth in diagnoses of autism.
Here is the ASA report in full in italics, with my comments in plain text.
ASA Calls for Studies Benefiting Families Now
Bethesda, MD — April 5, 2006 — The Autism Society of America (ASA), the oldest and largest grassroots organization serving the entire autism community, in response to a study by Dr. Paul Shattuck appearing in next week’s edition of Pediatrics entitled “Diagnostic Substitution and Changing Autism Prevalence,” says the study takes the focus away from the real issue: autism is affecting millions of people and families who need help today.
The study would probably have gone unnoticed but for the antics of Safe Minds and NAA in denouncing it and its author because his conclusions do not support their claims of an autism epidemic. It is groups like these and Generation Rescue who have shifted focus away from the real issue. It is a shame that the ASA feels obliged to respond to their agenda. If the ASA felt it had to respond why didn't it defend the report against the lies and distortions.
The real story behind Shattuck's report is that special ed services are missing loads of autistic kids who may be struggling in school because they have not been identified and their needs are going unmet.
“We need to move away from a dialogue about prevalence,” said ASA President & CEO Lee Grossman. “Whether it’s 1 in 166 children or 1 in 1,166 being diagnosed with autism, each and every one of those affected today and in the future must be helped.”
This misses the point entirely. Shattuck's paper does not question current estimates for the prevalence of autism. There is broad agreement by researchers in the USA, Canada and the UK that prevalence is around 60 in 10,000 or 1 in 166.
According to the study, the rise in number of autism diagnoses is not evidence of an epidemic, but shows that schools are diagnosing autism more often. Shattuck claims that autism rates have not increased over the last two decades, and children identified by U.S. school special education programs as mentally retarded or learning disabled have declined with the rise in autism cases between 1994 and 2003, suggesting a diagnostic substitution. Shattuck says there may be unknown environmental triggers behind autism, and his research suggests the past decade's rise in autism cases is a result of poor labeling.
Wrong again! According to Dr Shattuck (and thankyou Orac for your excellent defence of Dr Shattuck which elicited this response)
I was quite explicit in the article that A) my work does not prove or disprove the existence of an epidemic and I think that is still an open issue, and B) my study is not to be taken as supporting or refuting a putative link between autism and vaccines. My number one goal was to raise awareness about the limitations of the special ed. data.
All he is saying is that the special ed data is not up to the job.
ASA Board of Directors Chair Cathy Pratt, Ph.D. said that “in 30 years of working in the autism community, certain realities have become increasingly clear. More individuals are receiving a diagnosis on the spectrum. The needs of these individuals and their families continue to grow. And finally, the lack of options and resources place an incredible stress on all and threaten the future of these individuals. Any study that diverts our focus or that diminishes the perception of this need hurts us all. I know of no family who has enough resources for their child, nor any adult who has all the supports he or she needs.”
Once again, Dr Shattuck's study neither diverts focus nor minimizes perception of need. It points up the fact that the special ed system in the USA is failing to identify and meet the needs of many autistic school children. If the figures are unreliable the service is unreliable. Dr Shattuck's study is a wake up call. HE IS DOING US ALL A SERVICE.
Diane Twachtman-Cullen, Ph.D., co-chair of ASA’s Panel of Professional Advisors, noted that “the findings of Dr. Shattuck's study do not support the conclusion that there is or is not an autism epidemic. If we read more into this study than the findings support, we will be doing a disservice to the significant number of individuals with autism and their families who aren't mere statistics in a study, but rather, real people with real needs.” Jim Ball, Ed.D., co-chair of ASA’s Panel of Professional Advisors, added that regardless of Shattuck’s study findings, more and more people are being diagnosed with autism and the focus must be on the services agenda.
This is amazing. the co-chair of ASA’s Panel of Professional Advisors contradicts the entire thrust of the ASA article and nobody notices. They even include her contradiction in the offending article. And Jim Ball, please note that according to Dr Shattuck, even though the number of diagnoses is growing, not enough people are being diagnosed. You've got an Ed.D. and you still do not get it. Diagnostic substitution means that kids who used to have mental retardation or learning difficulties are having their autism recognized. Kids who are of normal intelligence, whether they merit a diagnosis of high functioning autism, Asperger Syndrome or PDD-NOS are being missed.
“The fact remains that the numbers of those with autism have reached epidemic proportions, and we need to address this now,” continued Grossman. “Let’s put research into interventions, education and services for individuals with autism, not into a dispute about whether autism is being better labeled versus an epidemic.”
The fact remains that the numbers with a diagnosis of autism still lag behind the numbers who are autistic. Who inside the ASA is briefing Leo Grossman? Or is he making it up as he goes along? Read Autism Diva for evidence to support the latter conclusion. Somebody ought to tell Leo Grossman that the reason why we have to win the argument about an autism epidemic is to retake the initiative from the autism = mercury poisoning brigade.
Because if there is a mercury induced epidemic we do not need any more research. We just need the DAN! protocols. If there is no epidemic we can stop wasting money investigating vaccines and autism, cancel all the court cases and put all the time and money saved into interventions, education and services for individuals with autism.
The ASA needs to make its mind up.
I was encouraged by the open letter that the ASA, in the person of Leo Grossman, co-signed to CBS President and CEO Leslie Moonves, The Dr. Phil Show Executive Producer Carla Pennington Stewart; and Host Dr. Phil McGraw. It was especially heartening to read that,
…AS does not have to be the curse that your show portrayed it as. Not only are individuals with AS able to lead happy, productive, and often amazing lives providing they have the right supports, but also because from a medical standpoint AS is not a “mental illness” or a “disease” as the show implied. Mental illness is different than a neurological condition, and for something to be a disease it has to be something acquired, not something you’re born with. 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.”
AN APPEAL TO THE ASA
What you say in your open letter is true for all people on the autistic spectrum. And if you really believe that autism is at its root, genetic, and therefore by definition it is not something that can be considered “curable”or a "disease" then stop trying to pander to the disease mongers in the mercury camp and reposition yourself within the mainstream of the autism community that includes most autistic people and their families and most researchers, clinicians and educational professionals.
David Kirby is touring Canada to promote his book, Evidence of Harm, that argues for a connection between the mercury based preservative thimerosal (until recently this was used in the manufacture of many early childhood vaccines) and an apparent increase in autism prevalence.
Canada, too has experienced an apparent increase as well. According to the Autism Society of Canada:
Epidemiological studies are still in the early stages in Canada and more surveillance and research are needed to develop accurate data on the prevalence of ASDs. The current prevalence of ASDs nationwide is estimated to be more than 1 in 200. (Fombonne, E., 2003: Modern Views of Autism, Can. J. Psychiatry, 48:503-505. Fombonne, E., 2003: Epidemiology of autism and other pervasive developmental disorders: an update. J. Autism. Dev. Disord. 33:365-381).
The ad for Kirby’s tour makes a number of claims.
“In some parts of Canada, children received mercury in their vaccines until at least 2002, and perhaps beyond; the residual effects of which we are seeing in the number of rising and confirmed cases of autism.”
If you look at the population map below the dark colours show where most Canadians live. Kirby’s tour takes him to some of the most heavily populated provinces: Ontario, Quebec and Manitoba with lots of autistic children. The only problem is that very few parts of Canada ever used thimerosal containing vaccines and then only in the Hep B vaccine.
New Brunswick, Prince Edward Island, Yukon and Northwest Territories were the only jurisdictions in Canada with a universal infant hepatitis B immunization program in 1999. The total population of these areas is less than 1 million compared with a total population of over 30 million for Canada as a whole. Since 2002 they have been joined by Britiash Columbia (pop 4,154,053) and Nunavut (pop 30,776) All population figures are taken from here.
Exposure to thimerosal is still very small. The Public Health Agency of Canada states that Canadian infants from the above six Canadian jurisdictions could have been exposed to between 12.5 µg and 37.5 µg of ethylmercury in the first 6 months of life (or an average of 0.069 µg/day to 0.206 µg/day), from thimerosal-containing hepatitis B vaccine. And for 75% of Canada’s children there is no exposure at all. Yet there are still autism societies up and running covering nearly the whole of Canada.
I hope the people who attend Kirby’s seminars ask him to explain why they have comparable levels of autism with the USA and NO HISTORY OF MERCURY IN THEIR VACCINES
Kirby’s second claim is that
“A recent university study showed that children exposed to high levels of environmental mercury were at increased risk of developing autism”
I guess that some of the highest exposures to mercury come from eating fish. And the Inuit who make up the majority of the population in Nunavut have historically consumed more fish than anyone else in Canada. Their cumulative burden of environmental mercury ought to be similarly higher. Yet Nunavut is the one part of Canada that does not have an autism society.
That is because THERE ARE NO AUTISTIC INUIT. Eric Fombonne is a world renowned authority on autism and, from his base in Montreal he has had a lot to do with the Inuit. For 15 years he and his team have been providing healthcare to 11000 Inuit and have found no cases of autism at all. Please go to Kev’s blog and read their abstract along with others finding no difference between mercury levels in the hair and the blood of autistic and non-autistic children.
That ought to be the end of the thimerosal/autism charade. But somehow I doubt it.
If you live in the UK you will appreciate the frustration that I feel in a carpet showroom when the carpet roll is 12 or 18 feet wide but is sold by the metre. How am I supposed to make sense of metric and imperial measures when they are mixed? Of course I am not supposed to. I am supposed to ask the salesman who will perform all the calculations for me and offer the firm's free fitting service providing I buy the necessary underlay, grippers and how about the optional stain guard treatment, sir?
I felt a similar sense of frustration when confronted by the "Put Children First" ad in USA Today last Thursday. It starts by claiming a 6000 per cent increase in autism. Even if this were true what does it mean? I asked a few people. Most of them thought it meant there were six thousand times as many people with autism and I am not sure that they all fully understood or accepted my explanation that it actually meant sixty times as many. 6000 per cent does mean 60 tmes as many. But it sounds bigger and scarier.
The ad continues:
We believe the Centers for Disease Control (CDC) knows that the ambitious
immunization schedule begun in the 1990s, nearly tripling the amount of
mercury injected into our children, created an epidemic of autism in America.
As long as the CDC denies that mercury from vaccines is responsible for this epidemic,proper treatment will never be made widely available to the more than
one million American children who could be treated today.
So it all began 16 years ago and now there are over a million autistic children. According to the US census there were 76,454,410 children aged 18 and under in the year 2000. But the birthrate has been falling. It used to be just over 4 million a year. Now it is just under 4 million. So I am guessing that there are less children today. Let us say 75 million. And one million of those are autistic!
A BIG PROBLEM
That was enough for me to visit the Put Children First web site and find out more. But then I hit a BIG problem. The website is arranged in chapters and in chapter one I read
In the 1980s the incidence of autism was somewhere between 1 in 10,000 and 1 in 5,000, today it is 1 in 150.
My BIG problem was that the ad in USA Today had claimed one million (out of an estimated 75 million) children with autism. That is the same as saying 1 in 75. But they just said it was 1 in 150 which makes only half a million. Which figure should I believe?
I felt like I was back in the carpet shop trying to juggle incompatible measures in my head. I do not think the number of children in the USA has doubled since 2000. I think we would have heard about it on the news. So one of those figures had to be wrong. My guess is that the advertising people got the figures wrong and it was too late to do anything about it so they put the correct figures on the website. You would have thought they could have pointed that out to people, though.
INCIDENCE OR PREVALENCE?
So I thought I better check all the figures just in case. First I had to sort out what incidence means. When you are dealing with statistics it is important not to get incidence and prevalence muddled up. Incidence refers to the number of new cases in a population over a period of time. Prevalence refers to the total number of cases in a given population at a specific time.
If Put Children First, Generation Rescue, Safe Minds and all the other organizations that believe we have an autism epidemic caused by mercury in vaccines are right then the incidence ought to go down very quickly now that nearly all childhood vaccines are mercury free. But the prevalence will go down a lot more slowly becauase of all the vaccine damaged children already out there; especially if they do not get the treatments that are supposed to cure mercury induced autism.
THE CURIOUS INCIDENCE
With this in mind I checked the figures for autism incidence before all the mercury went into the vaccines. And I checked the figures with Mark Blaxill, who is a board member for Safe Minds. Not with him personally, of course. I checked them with a presentation he gave to the Institute of Medicine. This brought me back to my BIG problem again. Because Put Children First had said on their website that incidence used to be between 1 and 2 in 10000. But the studies of autism from that period in the USA that Mark Blaxill quoted to the Institute of Medicine were nearly all over 3 in 10.000. (One study was just under 2.5 in 10,000 and the overall average was just under 3.1 so we'll call it 3 in 10,000 to be fair.)
Now, I can understand the advertising agency getting their figures wrong. But when Put Children First gets it so wrong on their website I begin to wonder. And in case you think I am quibbling over numbers like is it between 1 and 2 or is it 3, just think. If we were doing the sums today on 75 million American children, 1 in 10,000 = 7500 children and 3 in 10,000 = 22,500 children. That is a big difference. OK, it is not so big as the difference between the 1 million mistake in the ad and the real figure of 500,000, but it would still be a big difference for those kids and their parents.
PIC 'n' MIX AUTISM?
According to the Centers for Disease Control and Prevention (CDC) there may be a prevalence of 1 in 166 which is the same as saying 6 in 1000. The Medical Research Council in the UK (MRC) agrees. It puts the figure at 60 in 10,000. All these figures describe an identical prevalence rate but are written differently. This does not matter when the figures are the same. But if you are comparing 1 in 150 with 66 in 10,000 which is the biggest?
Actually 1 in 150 and 66 in 10,000 are both the same. Which brings me back to my BIG problem. Put Children First seem to be using the smallest figure they can find for how autism used to be (1 in a 10000) and the biggest figure they can find for autism today (1 in 150) so that when you do the sums you get that big scary 6000 per cent in the ad.
But the ad got the number totally wrong. So maybe the percentage is wrong as well. I checked.
- From 1 in 10,000 to 66 in 10,000 is 66 times bigger or 6600 per cent.
- From 1 in 10,000 to 60 in 10,000 is 60 times bigger or 6000 per cent.
- From 3 in 10,000 to 66 in 10,000 is 22 times bigger or 2200 per cent.
- From 3 in 10,000 to 60 in 10,000 is 20 times bigger or 2000 per cent.
So the only way you can get the 6000 per cent figure in the ad is with option 2 where you have to pic 'n' mix the figures from Put Children First and the CDC. I do not trust that 1 in 10,000. If the figure had been that low in the past I am sure Mark Blaxill would have mentioned it in his talk to the Institute of Medicine. So I am going to trust his figures for autism in the past and the CDC for autism today. My pic 'n' mix is option 4, 2000 per cent.
CARPETBAGGERS For AUTISM?
Put Children First's numbers for autism seem to be different from everybody else's. Their ad has doubled the number of autistic children and tripled the percentage figure. Now, Put Children First is an offshoot of Generation Rescue that was set up by J.B. Handley. He is a very astute businessman who would surely have to approve those figures before spending $100,400 on a full page ad. And what about Robert Kennedy? Either he or his office must have looked at those figures before letting them put his name on the ad. But there it is in big letters just after the 6000 per cent.
IT’S TIME FOR THE CDC TO COME CLEAN
WITH THE AMERICAN PUBLIC…”
- Robert F. Kennedy, Jr., March 2, 2006
You do not get to be as rich or successful as J.B. Handley and R.F. Kennedy Junior by making mistakes like that. They have to know that those figures are wrong but they are carrying on because it suits their purpose. I do not know what that purpose is but they are less like the carpet salesman who began this post and more like carpetbaggers.
The term "carpetbagger" is used to describe "an outsider who moves someplace to exploit the natives and enrich himself at their expense," or "politicians who move to a new jurisdiction solely to meet a residency requirement for holding public office."
Now I am thinking that if I cannot trust their figures why should I trust anything else they say about autism, mercury and the CDC? What do other people think?
By happy coincidence this blog has a namesake in India, Action For Autism is the leading autism organization in India and possibly in the whole of South East Asia. Some autism organizations in the more affluent West could learn a lot from their attitude. Take this from their home page:
A society that views the interdependence of people of every ability as valuable and enriching and seeks to provide equal opportunities for all.
To facilitate a barrier free environment; to empower families of persons with autism, and to act as a catalyst for change that will enable persons with autism to live as fully participating members of the community.
Or their explanation of why they use the puzzle piece logo.
Many autism organizations have adopted the logo of the puzzle piece to symbolize how it appears that one piece of the autism puzzle is missing, and how autism itself is a confusing and puzzling disability.
We, too, have found this an appropriate analogy. However, as an organization we do not view having a child with autism to be a tragic or unfortunate situation for either the parents or the child. It IS a difficult situation to live with, like many difficult situations in life, and for families in India, this difficulty is magnified by the poverty of services available. Despite this, we prefer to send a more encouraging message to people about autism, and therefore, the little boy in our puzzle piece is not someone who is looking downwards or weeping, but is someone who is smiling and connecting with those around him. Also, we show him partially emerging from the puzzle to represent that all people with autism can improve and grow to some extent.
Unfortunately, they struggle to find the resources to match their aspirations. The do operate a school with a delightful philosophy.
Given proper intervention, all people with autism can improve. Open Door provides a happy, stress-free learning environment where the child is not judged or ‘pushed’ to perform … The qualifications we look for in our potential teachers are open mindedness, a willingness to receive and give feedback with other teachers, and a love and respect for children … we work with the child’s interests and emerging skills, rather than their deficits.
This is good. But it is only one school, the only school in India where teachers have autism specific training. Here is a summary last year’s achievements
- 63 children came to AFA for diagnosis and assessment.
- 62 children attended The “Open Door” School Programmes
- 7 young adults trained at Aadhaar, the Vocational Training Centre
- More than 300 families turned to AFA for counseling, either face-to-face, by phone or correspondence.
- 4 therapists completed AFA’s year- long training course in Autism
- AFA employed 18 members of staff as well as numerous, regular volunteers
So there you have it. A national autism society with a sound philosophy, who are putting children first and achieving great things on as limited budget. They are also ambitious. Action for Autism are planning to raise $379,000 to build and equip a new National Centre. I urge everyone to visit their web site to learn more about their work and to give them whatever financial assistance you can afford.
One person who could afford to help is J.B. Handley, the founder of Generation Rescue who has just launched a new organization, Put Children First with a full page ad in USA Today. This is the fourth full page ad in his campaign to persuade the USA that there is an autism epidemic caused by the mercury in vaccines. At around $100,000 an ad this campaign has done nothing to help a single child and, arguably, has been the cause of harm to children whose parents have been taken in by his campaign and subjected their children to unnecessary and potentially dangerous chelation therapy.
If he had given the money to Action for Autism’s Buy A Brick Program that would have put a lot of children first.
Yesterday I complained about a Safe Minds press release posing as a news story on News-Medical.Net
I would like to think that my blog did the trick. But the reality is probably that they publish anything that is fed to them, providing it appears reputable. MAybe we in the "real autism community" ™ ought to give them more to feed on than the PR of the vaccine/epidemic brigade.
Autism Diva has an excellent piece on The Contribution of Diagnostic Substitution to the Growing Administrative Prevalence of Autism in US Special Education by Paul Shattuck.
As far as I can tell from press reports and reading the abstract of Paul Shattuck's article, one of his major points was that school administrative data could not be used to justify arguments for an autism epidemic. Safe Minds responded with a press release that misrepresented Shattuck's position as using "Department of Education data to conclude no epidemic exists," which is not the same thing at all.
This should not matter too much. A pressure group bending the truth to fit its agenda should merit little attention from serious news organizations like News-Medical.Net
News-Medical.Net is a free to access global medical news service for the consumer, medical professional and researcher. Our mission is to segment, profile and distribute medical news to the widest possible audience of potential beneficiaries. The news provided is sourced from over 6000 qualified news sources each day. With over 1.35 million visitor sessions and in excess of 3.5 million page views each month News-Medical.Net is now recognised as one of the primary sources for medical related news.
So when I read the Safe Minds press release on their web site presented as a news story I decided to write them this letter.
In your article "Study on the rise of Autism creates debate" you end by saying
"More information about the Shattuck study and autism prevalence may be found at http://www.safeminds.org or by calling Jamie Shor at 202-628-7772." This along with two thirds of your article is taken verbatim from a Safe Minds press release dated April 3
Safe Minds is a parent led organization that believes that autism is caused by mercury poisoning. They blame this on the ethyl mercury that was used as a preservative in many childhood vaccines until recently in the USA. They advocate chelation therapy as a cure for autism. There is no credible evidence for this position which directly contradicts the findings of the Institute of Medicine and the Centers for Disease Control and Prevention.
Safe Minds are not a reliable source of information on matters medical or scientific. Nor are they a news agency. Please compare the story they gave you with the this account, which is a report on Shattuck's paper and not an attempted rebuttal posing as reportage.
You state that "The news provided is sourced from over 6000 qualified news sources each day." If Safe Minds passes as a qualified news source that does not inspire me with confidence in the rest of your output.
On another list I read about this CNN blog discussing the Rotenberg Center. You can also read the transcript for the whole show. The Rotenberg segment is in the second half. Some of you may not have heard of the Judge Rotenberg Center. This from the transcript sums it up pretty well.
"Antwone Nicholson's school looks more like Disneyland than a place for kids with special needs. There are pinball machines and cartoon characters, wax figures and artwork punctuate with cornflower blues and vivid pinks. Each student has a computer, healthy food, plush quarters, heavy supervision, and constant attention.
Why then would Antwone's mother, Evelyn Nicholson, be fighting like mad to get him out of this place?
Because along with the perks at this center for troubled children come the punishments. The Judge Rotenberg Center claims to be the only one in the country using electric shock aversion therapy. They call it the Graduated Electronic Decelerator, the GED. And half their students go to school each day tethered to electrodes housed in a fanny pack"
Parents have to sign consent forms for this form of punishment, which is illegal in many states. But Antwone's New York school district is happy to spend tax dollars sending Antwone out of state for a treatment that is illegal in New York. It reminds me of extreme rendition.
The scariest thing about this is not the attitude of Matthew Israel, the executive director of the Judge Rotenberg Center and his staff. After all, you would expect them to believe in what they are doing. What really scares me is the fact that 216 children have been subject to this "treatment" with parental consent over the last 16 years and the segment suggests that many of the victims support it as well.
I recently came across another report in which barbaric treatment was justified because the outcome was highly valued. But in this case it was not about reducing unwanted behaviours, but preserving and enhancing a valuable one, the pure singing of the boy soprano, by castrating him.
For three hundred years, mainly in Italy poor families sought fame and fortune by castrating their sons.
In 17th and 18th Century Italy, about 4,000 boys were castrated each year, from the age of eight upwards, with the aim of making a fortune as opera singers and soloists with choirs in churches and royal palaces.
Most of them did not make it. But for those who did there were enormous rewards alongside the adulation of the oh so civilized opera cognoscenti who would applaud performances with cries of "Eviva il coltello" ("Long live the knife!")
In case anyone thinks I am guilty of a gross misrepresentation in making this comparison, let me state:
I am not condemning the parents; neither the poor Italians who considered that anything was better than the future that their lives held for their children, nor those parents today, who are led to believe by those who claim knowledge and expertise, that anything is better than the future that autism holds for their children.
All I am saying is that once upon a time, what are by today's standards unacceptable means, were acceptable because the end result was so highly valued. When it comes to autism we should always be wary, lest our hopes and ambitions for our children blind us to the true nature of the cost we impose upon them. And we should be especially wary of those latter day cognoscenti who applaud and encourage us to take our children down extreme paths in pursuit of a chimerical cure.
Nobody is suggesting that we take a knife to our children, of course. But how much more civilized is the chemical castration being touted by the Geiers? "Eviva il Lupron" anybody?
This is a final reminder of the call for proposals. There is less thana week now remaining before the deadline on the 7th of April. Please distribute this freely to anyone you think may be interested.
— Autscape 2006, Call for Proposals
Event date: Tues to Fri, 1-4 August , 2006 Location: Radstock, Somerset (near Bath) Submission deadline: April 7, 2006
Autscape is a combined retreat and conference organised for and run by autistic people. The second annual event will be held this summer in a peaceful rural retreat centre surrounded by extensive and picturesque grounds. We are now accepting proposals for seminars & workshops to be presented at Autscape 2006. This event is primarily for, not about, autistic people. Workshops geared towards parents and professionals may be accepted, but must be positive in their support for autistic people and their right to be different. In general we would like ideas for positive ways of living with autism and navigating an alien world. To get some idea of what we are looking for, please refer to last year's programme:
We aim to both stimulate your interest and challenge your skills. We hope to change lives by empowering autistic people to live their own lives more effectively. If this interests you, please see our website for more information, detailed submission guidelines, or to submit your proposal online.
That was a public service announcement on behalf of Autscape