Judge Rotenberg Center – Close it Down!

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.

Judge Rotenberg Center again

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

A Call for Ethical and Unprejudiced Leadership and Practice in the Field 

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.

Of mice and men and autistic fruit flies

Autism is a hot topic for scientists engaged in brain research. If you can link your research to autism it may help you to access additional funding that is available in the USA. In response to a determined campaign by parents and lobby groups  Congress passed the Combating Autism Act which sanctioned a substantial increase in the funds available for research into the causes of autism. At the same time the high profile pressure group Autism Speaks has, by a series of mergers and alliances, notably with Cure Autism Now! and the National Alliance for Autism Research, emerged as a leading funder of autism research.  In June it announced research grants of $15.2 million USD. Then there are private trusts like the Simons Foundation which is providing long term funding for autism research at Yale($2.5 million USD), Cold Spring Harbour, ($13.8 million USD), Michigan($2.8 million USD), MIT($7.5 million USD) and Rockefeller ($7.7 million USD).

This is serious money. One hopes that it attracts serious research. The Chapel Hill School of Medicine at the University of North Carolina is a serious research institute. According to Science Daily  they have made an important discovery that

may lead to advances in understanding autism spectrum disorders, as recently, human neurexins have been identified as a genetic risk factor for autism.

They made this important discovery while researching the role of neurexin in Drosophila, that is fruit flies to the rest of us. Drosophila are an important part of the biological research toolkit. Their relatively simple genome and rapid reproductive cycle have made them a favourite of biologists researching the mechanics of evolution. But autistic fruit flies? Autism is a complex social disorder. Fruit flies are not complex social beings.

Neurexin is a basic prerequisite for  neuronal connectivity. Without it the fruit flies barely survived. Movement was severely impaired. These are primitive creatures compared to us. I would anticipate that a similar lack in humans would have far more devastating results. Autism would be the least of our worries. Never mind. The putative autism connection cannot have done any harm in obtaining funding from

• the National Institute of General Medical Sciences,
• National Institute of Neurological Disorders and Stroke
• the National Institute of Mental Health 
• the state of North Carolina.

Moving up the food chain we find a mouse study. Thanks to Mady Hornig mouse studies  of autism have received a bad press. But this one is different. Thanks again to Science Daily for telling us that

Howard Hughes Medical Institute researchers have genetically engineered mice that harbor the same genetic mutation found in some people with autism and Asperger syndrome.

The gene in question codes for for a protein called neuroligin-3.

This protein functions as a cell adhesion molecule in synapses, the junctions that connect neurons in the brain and allow them to communicate with each other. Synapses are essential to all brain activities, such as perception, behavior, memory, and thinking. Südhof said that the neuroligin-3 mutation that his team recapitulated in the mice has been identified in some people with genetic conditions known as autism spectrum disorders (ASDs). Mutations in proteins that interact with neuroligin-3 have also been detected in some people with ASDs.

Neurexin is one of these detected proteins.  (remember the fruit flies?) Is this a double whammy that damns autistic people/mice forever? Apparently not. These genetically engineered, autistic mice did rather more than “barely survive.” They showed diminished social interaction but improved cognitive performance compared to neurotypical mice. This is automatically seen as a deficit. But surely progress is driven by those individuals who turn their back on the herd and consider the external world? Never mind. In the wacky world of autism research, conformity is valued over diversity and sociability scores higher than intelligence.

But my take home message is that geek mice rule OK! [or at least they ought to]

Autism, Genetics and Research Ethics

The latest edition of Communication, the members magazine of the National Autistic Society contains two interesting articles on genetic research.

GENE GENIE by Professor Anthony Bailey

The first  article, by Professor Anthony Bailey of Oxford University’s Autism Research Unit, seeks to summarize recent developments in genetic research. Considering the complexity of the subject and the nature of his audience (mainly parent members of the NAS like myself with no specialist scientific training) he does a remarkable job in under a 1000 words. I  find that those experts who can write coherent and concise accounts of their work for a lay audience are usually the ones with the soundest grasp of their subject matter. Professor Bailey is no exception.

He starts by emphasizing how little we know.  This cannot be stressed too much. There have been a spate of recent reports in which journalists, and some scientists who ought to know better, have hyped up the latest genetic “breakthroughs” as harbingers of an imminent cure. But all we have so far are “candidate” genes. This is not to diminish the work of the scientists involved. Genetic research has been marked by a massive collaboration of scientific and funding institutions. It is detailed and difficult work that is only now beginning to accelerate with access to improved technology.

The most likely candidates are genes on the long arm of chromosome 7 and on chromosome 2. Again, caution is necessary. These are not genes for autism. They are potential genes for autism susceptibility. There is no single gene for autism. According to Professor Bailey, “the risk of developing autism seems to be conferred by the interaction between at least 3 or 4 genes (and possibly many more) and there were no clues as to what these genes might code for.”

When a gene is finally identified scientists will still want to learn more about what it does, when it is expressed and which other genes it interacts with. They will also try and identify the environmental factors at work. These factors need not be “known neurotoxins.” They may be neutral or even beneficial in the absence of particular genetic combinations.

[OK I realize that some of my readers may regard autism as a beneficial outcome. I look forward to your comments so that we can explore the nuances of meaning around accepting autism and welcoming autism.]

Our knowledge of genetic factors in autism leans heavily on work with families where more than one sibling is affected.  The evidence from twin studies is that autism is a highly heritable condition. So it makes sense to look at families where this is most obviously the case when seeking the genetic causes of autism. But many parents who read Professor Bailey’s article will have no obvious genetic traits of autism in their families. A new study may help to explain this. Dr Michael Wigler is a molecular geneticist at Cold Spring Harbor Laboraory in New York and he has just published a pilot study suggesting that spontaneous mutations in the parents’ sperm or egg cells may be the cause of autism in a majority of cases. Prometheus discusses this in more detail on his blog, Photon in the Darkness, and provides a link to Dr Wigler’s paper.

This all goes to show how complex the science is. It is increasingly unlikely that we will find a simple genetic cause or even a simple genetic predisposition that relies on an obvious and preventable environmental trigger for autism. I am fascinated by the science of autism but it is not going to provide any immediate answers or easy fixes. Social policy will have a greater impact on the quality of life for autistic people in the foreseeable future. This is why public attitudes to autism are so important – a point addressed in the second article.

CHOOSING THE FUTURE by Dr. Phiippa Russell

Dr Russell is a Disability Rights Commissioner and Disability Policy Advisor to the National Childen’s Bureau. She wrote about the ethical implications for genetic testing and research. She began by pointing out that alongside the potential health benefits of genetic science there is also the danger that “the primary focus of new genetic technology might not be on improving the quality of life and healthcare for vulnerable individuals. Instead, it could be lead to eugenic attitudes, which devalue disabled people and encourage discrimination in employment and other areas of life.”

There are some areas where genetic screening ought to be non-controversial. But what if it leads to discrimination in obtaining employment or essential life insurance? Dr Russell has an interesting take on this. She argues that women with a known genetic susceptibility to breast cancer may acually live longer than other women who are less likely to have regular mammograms and more likely to have their cancer detected later, when treatment options are less effective.

This kind of logic may appeal to actuaries. But most people will react negatively to the idea of disability, especially if it is a genetic disability that is  predictable and, disregarding David Hume,  therefore ought to be prevented. Dr Russell thinks that “If we accept this view, then we risk

• reducing embryos, foetuses and, in consequence, individuals to their genetic characteristics, thereby reversing the progress made concerning human and civil rights for disabled people
• increasing responsibility (and social exclusion) for familes with disabled children, where the disability was related to genetic predisposition
• ignoring the multiple talents of disabled people and the real contribution which they make to family and society.”

Genetic science will advance, regardless of the ethical dilemmas it creates. People with disabilities ought to benefit from these advances. But according to Dr Russell “there are challenges in avoiding unnecessarily negative pictures of quality of life and value to the local community. “

She does not mention autism by name but goes on to say, “Many readers will be both aware and proud of their disability. It is unique to them and carries benefits as well as some challenges.”

Dr Russell ends with his quote from an unidentified disabled man.

“Disabled people themselves must join the debate about the ethics of genetic testing – you cannot close Pandora’s box once it has been opened, but the challenge is in using new information proactively to improve quality of life, not to shut down someone’s work and other opportunities because of poor understanding and low expectations. Knowledge is power – but it is essential that it is controlled by the person directly affected and used for his or her benefit, rather than used by others as a means of social exclusion.”

This is one reason why next month’s meeting on the Politics of Autism is so important. Anyone who can attend should ring up and book a place now.

According to Communication “The NAS is keen to hear the views of members and others on this complex issue … email communication@nas.org.uk with the words ‘gene ethics’ in the subject line.” The full articles in Communication are only available to NAS members.  If you want to join email membership@nas.org.uk

I am greatly encouraged by the NAS  inviting this sort of debate. I do urge people to respond.

‘It is not a disease, it is a way of life’

 

This article is in today’s Guardian.

It provides a useful introduction to the positions of some of the supporters of autism acceptance, including myself and fellow bloggers Kev Leitch and Larry Arnold.

The article begins:

Today, an event run by and for autistic people kicks off in Somerset, the latest act of a burgeoning autism rights movement. Emine Saner reports on the campaign to celebrate difference, rather than cure it.

It contains some really good insights from the people she interviewed. For example, Gareth Nelson (pictured above) of Aspies for Freedom says:

I don’t think you should cure something that isn’t purely negative, It’s the same as black people, who seem to be more at risk of sickle cell disease than white people but you’re not going to attempt to cure ‘blackness’ to cure sickle cell.

The only unfortunate thing about the article is that it does play up the role of Aspies for Freedom (AFF) at the expense of other initiatives. I was surprised to read that:

Nelson, with his wife Amy, who also has AS, is leading the UK’s autism rights movement.

And I am not convinced that AFF has 20000 members when the discussion forum on their webite has less than 6000 members and many of those are from overseas. This is unfortunate as one of the strengths of the emergent movement for autism rights and acceptance for autistic people is that there are many voices and all are free to explore important differences as well as points of agreement. As an example, Larry Arnold and I work together within the structures of the NAS and are in broad agreement on many issues. But we differ sharply in our attitude to the role of scientific research in autism.

I would also have liked to read more about Autscape. This event is unique in Europe. It takes its inspiration from a similar event in America called Autreat. Like the AFF, Autscape began three years ago but it makes no leadership claims. Instead it aims to:

• Serve as a haven created by autistic people. An autistic space.
• Provide a venue where the majority of speakers will be autistic.
• Create possibilities within the conference for autistic people to communicate and socialise with other autistic people on their own terms.
• Educate and inform on issues arising from within the autistic community.
• Advocacy and self-advocacy.
• Promote acceptance of autistic people in their own environments.
• Enhance the lives of autistic people through empowerment, advocacy, and a nice relaxing time.

But these minor criticisms should not detract from a very valuable article in which the author shows respect for autistic people and accurately reports their views.

 

Downs but not out.

Down’s syndrome novel tugs at America’s heartstrings

Moving tale that highlights genetic condition becomes sleeper hit of the year

Paul Harris in New York
Sunday June 17, 2007
The Observer

Like many good stories, The Memory Keeper’s Daughter begins on a dark and snowy night. But, unlike most first novels from barely known authors, the book has gone on to be one of the biggest hits in recent American publishing. It has sold more than 3.5 million copies in America and is due for publication in at least 15 other countries. It has done all this despite – or perhaps because – it is about one of the most emotional and difficult situations any new parents might face: a child being born with Down’s syndrome.

According to the Observer

The book has been a huge hit among parents of Down’s children and those who work with them. They have praised its portrayal of a child leading a full life and bringing happiness to a parent.

This is all very positive but I wonder, if the writer had interviewed people with Downs, would they have praised it because it portrayed a child with Downs bringing happiness to a parent? I have always found that the joy of parenthood derives from bringing happiness to my children. Perhaps this is what the writer meant, that parents can rejoice in their children’s happiness.

Apparently many prospective parents of Downs children do not believe that their child will be happy.  Over 90 per cent of Downs fetuses that are identified by prenatal screening are aborted. The UK Downs Syndrome Association estimates that 10 in 10,000 live births are Downs. Earlier estimates, before amniocentesis became common, ranged from 15 to 24 in 10,000.

The relevance to autism

With Downs we know exactly where the genetic abnormality lies but have no idea why one of the parents produces a sperm or egg cell with an extra chromosome. We do not understand how this extra chromsome works to produce the features of Downs Syndrome and nearly 50 years after Professor LeJuene discovered the trisomy on chromosome 21 we are still a long way off being able to reverse or ameliorate its effects. All we can do is identify around a half of Downs pregnancies and offer an abortion.

A lot of money is being spent on research into genetic markers for autism. There is not just one, there are dozens of candidate genes for autism and, unlike Downs which is present from conception, there are as yet unknown environmental factors which may contribute to gene expression. Yet every discovery is trumpeted as leading to a possible cure or a genetic test to prevent autistic babies from being born.

This is damaging for a number of reasons.

1. If a cure is thought to be just a few decades away this will divert funding way from research into ways of improving outcomes for people who are already autistic.
2. To justify the huge expenditure autism has to be hyped as a health crisis that is devastating lives, when in fact it is lack of understanding and the irrational fears that this sort of hype encourages that are the biggest obstacles for many families.
3. If autism is so unremittingly awful and the genetic solution is hyped as twenty years down the line parents of newly diagnosed children are going to be vulnerable to the biomedical quackery that is already entrenched among some sections of parents.
4. Existing autistics will be viewed at best as victims and not as human beings with equal rights to acceptance and ethical treatment.

As public opinion increasingly lines up behind scientific opinion on the unfeasibility of the autism vaccine hypothesis it is important that we speak up for autism acceptance and challenge the triumphalism in those quarters of the mainstream medical and scientific research community that seek to eliminate diversity.

Reasons to be cheerful

AUTISM IN CANADA 

Regular readers of Michelle Dawson’s blog [and, if you are not a regular reader, I commend it to you] will be aware that the major autism societies in Canada are fervent believers in the ability of intensive behavioural intervention, by which the mean the applied behaviour analysis of Ivor Lovaas,  to normalize the behaviour of autistic children. They are persistent in their attempts to make such treatment mandatory for all autistic children and are not above using misinformation to win their case.  

These self appointed ‘autism advocates’ argue that unless autistic children receive IBI/ABA in the early years they will be unable to learn and will face a lifetime of institutional care. Like the mercury malicia in the USA they sieze upon headline figures for autism prevalence and suggest that all of these are victims of an epidemic that robs children of their humanity and condemns them to live out a worthless existence unless they can be recovered. They ignore the existence of Canada’s autistic adults and when adults like Michelle Dawson challenge them and speak out for recognition and acceptance, she is vilified.

So I was pleased to read today of this research project in Canada

Researchers from the University of Calgary, University of Manitoba and University of Saskatchewan are looking to shed some light on the often-misunderstood world of autism.The group of professors and students from the division of applied psychology are conducting a study that focuses on 100 youth aged 17-21 diagnosed with high-functioning autism, or Asperger’s syndrome. The study is designed to look at the under-studied adolescent demographic and assess the positive aspects of these points in the autism spectrum.

Positive aspects of autism? what will Canada’s ‘autism advocates’ have to say about that? When they publish their results,

the team hopes to dispel some of the stereotypes in mainstream media and pop culture.

Many of these stereotypes are being reinforced all the time by the propaganda coming from the mainstream autism societies. It is good to see that while they may be setting the political agenda regarding autism in Canada, there is still an independent tradition of enquiry amongst Canadian academe.

THE AUTISM ACCEPTANCE PROJECT

This is as good a time as any to remind people of The Autism Acceptance Project, [TAAP] which is also based in Canada. The website has just had a makeover and carries the inspiring title, “Tapping into Human Potential and Dignity.” and remember to add TAAP founder Estee Klar Wolfond’s blog to your feed along with Michelle Dawson’s.

6th INTERNATIONAL MEETING FOR AUTISM RESEARCH [IMFAR]  

Michelle Dawson is not only a campaigner for the rights of autistic people. She is also a researcher and will feature at IMFAR this year with one oral and two poster presentations. You can read the abstracts on Michelle’s blog:

THE AUTISM AWARENESS CENTRE

I know very little about Maureen Bennie, except that she is the driving force behind the Autism Awareness Centre,

Canada’s National Provider of ASD Conferences

Leading the Way for Change!

She is also a parent of two autistic children and is running home programmes of Intensive Behavioural Intervention with both of them. I checked out the website because I am going to one of their conferences in the UK this year. I was pleasantly surprised. Maureen reviews a lot of books on the website and has some positive things to say about autism.

How To Understand Autism the Easy Way requires a beginning-to-end read because all of the chapters hinge on the first chapter’s explanation of social and computer thinking. The author does a beautiful job of explaining what it is like to autistic through the concept of social and computer thinking. The writing resonates respect and a positive outlook on this disorder. It is clear that Alex Durig feels a sense of awe about these individuals. The reader will feel this awe and develop a new awareness of autistic perception not explored in other books. [How to Understand Autism – The Easy Way by Alex Durig]

Norm Ledgin successfully puts to rest the negative connotations an Asperger’s diagnosis usually has. He’s devoted his literary energy into seeing the positive aspects of Asperger’s Syndrome. Society generally looks upon people with different or unusual traits as abnormal, but Ledgin sees the Asperger’s traits as great gifts. He uses famous role models to emphasize the point of what these unusual traits have contributed to society and have made us richer for it. [Asperger’s and Self-Esteem: Insight and Hope by Norm Ledgin]

Readers can empathize and smile at the joys of life this young man has experienced in his short lifetime. You will realize autism does not have to be a deficit but a different way in which to view the world. [The Mind Tree by Tito Rajarshi Mukhopadhyay ]

I have no wish to minimize the serious problems that advocates for autism acceptance and understanding face in Canada. But, as Ian Dury reminds us, there are reasons to be cheerful.