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News- Page 3
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News : Autistic Liberation Front fights the 'oppressors searching for a cure'
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Posted by sylvia on Thursday, January 20, 2005 (21:14:57)
The Telegraph 09/01/2005
By David Harrison and Tony Freinberg
It is the latest freedom movement for an "oppressed" minority: the Autistic Liberation Front. You can wear a badge, buy a mug or don a T-shirt proclaiming the movement's goals - to celebrate autism, stop the search for a cure and "defend the dignity of autistic citizens".
The movement, which uses the clenched fist as its logo, was founded recently in America but has rapidly won support in Britain. Adherents compare themselves with gay liberationists, fighting for their "human rights".
Their badges declare, "I am not a puzzle, I am a person" and, "Here we're silenced. Parents don't speak for me."
Supporters argue that scientists' efforts to cure autism, a developmental brain disorder that typically appears during childhood and affects the areas controlling language, social interaction and abstract thought, are like attempts by previous generations to cure homosexuality or left-handedness, and are doomed to failure.
They see autism as "an alternative form of brain-wiring" with its own benefits and drawbacks rather than as a disorder in need of a cure. "We need acceptance of who we are and what we are," said one campaigner. "You have to get out of the cure mindset."
Their move mirrors that of some campaigners for the deaf who recently complained about 'oralist' attitudes that victimise deaf people. Paddy Ladd, the deaf writer and campaigner expressed frustration in his 2002 book Understanding Deaf Culture that deaf people were treated not as a 'linguistic minority' but as group of people needing to be 'cured'.
The movement is causing anxiety, however, among British parents concerned by their children's unpredictable, often aggressive behaviour. They believe that intensive behavioural therapy is the best way to ensure that children with autism can make a contribution to society and lead lives that are as fulfilling as possible. In recent years, there have been an increasing number of attempts to use dramatic medical interventions for people with autism.
One such treatment involves injecting them with secretin, a hormone obtained from pigs' intestines. When the treatment first became available in the late 1990s, scientists believed that they had discovered a cure but doctors now caution against the use of secretin, which researchers at the University of North Carolina have concluded "may be no more effective than salt water".
Many British autistic people are backing the movement to fight the "tyranny" of the advocates of a cure. David Downes, a successful London artist with Asperger's Syndrome, an autism spectrum disorder, said that he "totally sympathised" with the liberation front. "I think it's fantastic," he said.
"It speaks directly to a dilemma I've been having – explaining how I am different, both from 'normal' society and other people with Asperger's or autism. People who know me well understand that I can't be cured, even if I can adapt to the world around me."
Mr Downes, 33, who lives in north London and whose work has been exhibited at the Royal College of Art in London, admitted that Asperger's "had its drawbacks" but said that it had also given him immense positives. "Part of my artistic ability - especially the obsessive attention to detail and my ability to remember views from above - comes from my Asperger's," he said.
Some parents of autistic children also expressed support for the liberation front. Charlotte Moore, from Hastings, East Sussex, who has two autistic boys, aged 13 and 14, said: "The comparisons with homosexuality and left-handedness are fair. Neither is a disease and nor is autism. You have to accept the condition, try to minimise aspects of it that cause problems and celebrate the positive sides of autism. You should not try to make an autistic child normal because you can't."
Mrs Moore disagreed, however, with the front's suggestion that autistic people should be left to their own devices. "There are therapies and interventions that can help to alleviate symptoms that are distressing to autistic people and their families or carers."
More than 500,000 people in the UK are autistic, with boys four times more likely than girls to have the condition. Children with autism are 20 times as likely to be excluded from school as other children and 40 per cent of all autistic children wait more than three years for a clear diagnosis.
Vernon Beauchamp, the chief executive of the National Autistic Society, Britain's largest autism support group, with 11,500 members, endorsed the front's goals.
"Autism is a spectrum disorder and therefore people with mild forms of autism who are high-functioning and intelligent can get annoyed at being viewed as if they have a disability," he said. "They don't want to be patronised but do want people to recognise their condition - not to try to 'cure' them but to recognise that they have a different outlook."
He added, however, that there were "a hell of a lot of people out there who do have serious types of autism and really do need help".
Keith Lovett, a director of Autism Independent UK, a smaller autism charity, said: "Many of the therapy programmes used by parents to try to make their children 'normal' really don't work."
The liberation front was inspired by an increased focus in America on finding a "cure" for autism, at a time when a record number of Americans - one in 200 - are being diagnosed with the condition. The movement circulates petitions on websites such as autistics.org and neurodiversity.com. There have also been demonstrations, including a recent march in New York, where 10,000 people turned out to raise money for research.
Many British parents are unconvinced. Faced with the difficulties of raising autistic children, such as their shifting moods and sometimes violent outbursts, they say the idea of "freedom" for all autistic people is "pie-in-the-sky".
Samantha Hilton, from Crowborough, East Sussex, who has three autistic sons, aged five, seven and 11, said that it was absurd to say that all autistic people should be left alone. "It all depends on the level of autism," she said. "The people who organise demonstrations and such like must be very high-functioning autistics and so could probably cope by themselves. But their autism is making them insensitive to the many autistics who are not so high-functioning and would find it very difficult to be 'liberated' in this way."
Mrs Hilton said it was inaccurate to compare freedom for autistic people with gay liberation. "Being gay does not stop you having a job and getting on with daily life. Autistic people don't have a choice."
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News : Autism center to close over abuse scandal
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Posted by sylvia on Saturday, August 21, 2004 (19:15:23)
Jerusalem Post 04/07/2004
By Judy Siegel-Itzkovich
Health Minister Dan Naveh has ordered the shutdown of the department for adult patients suffering from autism in the Eitanim Mental Health Center near Beit Shemesh after a committee exposed suspected abuse of patients by two staff members a few months ago. Naveh ordered that 19 patients be transferred to other institutions and the evidence in the case be made available for a police investigation.
The ministry said its investigation committee raised suspicions of "serious abuse" by staffers against autistic patients. The ministry did not say whether the suspected abusers were doctors, nurses, paramedics or other workers, but it did say they will be suspended immediately.
The alleged mistreatment included prohibiting "troublemaker" patients from speaking, including one who wanted to complain about water in the shower being too hot; preventing patients from moving freely; putting a full cup of water on a patient's head, and then not allowing him to change his wet clothes when the water spilled on him; demanding that patients eat all the food on their plates, plus food under the table that had fallen out of their mouths; and calling a male patient by a female name and dressing him in a bra.
An internal investigation was launched by hospital director Dr. Ya'acov Margolin after Eitanim workers complained to hospital management about the alleged abuse. Upon receiving this report, the ministry decided to set up its own investigation committee.
"I am shocked," said Naveh after receiving the report. "I shuddered when I read what was done to helpless patients. I will not agree under any condition that these events take place in our health system. There is no pardon for these acts."
Most of the patients will be moved within two months to a hostel in the community, and psychiatric hospital beds will be found for the others within half a year.
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News : And coverage for all
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Posted by Sylvia on Sunday, June 27, 2004 (16:48:08)
Globe and Mail 05/06/2004
By Kirk Makin
At the age of 4, Miki spent her waking hours singing at the top of her lungs. She slept fitfully, flapped her arms like a bird and incessantly twirled toys and other objects -- classic symptoms of severe autism.
Twelve years and thousands of hours of intensive and very expensive therapy later, Miki attends a fine-arts school in Langley, B.C., and plays six musical instruments. Certain concepts still elude her, but where once she had no grasp of language and was transfixed with aberrant patterns, now she can express herself and comprehend most of what she hears.
"She is not going to lose her autism diagnosis, but we do have a child who is very functional," says her mother, Sabrina Freeman, who credits a technique known as applied behavioural analysis for her daughter's progress.
A form of therapy developed in California by Norwegian-born psychologist Ivar Lovaas, ABA breaks down language and mental and physical tasks into components that are repeated until a child masters them. Most effective when children are young, it requires long hours of supervision and can cost up to $60,000 a year, a sum the B.C. government refuses to pay.
The province doesn't consider autism therapy a health-care necessity, but without it, Ms. Freeman says, her daughter probably would have been doomed to a life of institutionalized misery, self-mutilation and, perhaps, suicide.
For years, the Freemans footed the bill themselves. But the financial pinch worsened, and they also became appalled at the plight of autistic children unable to afford the therapy. So, in 1998, they joined several other families in launching what was destined to be a stunningly successful action under the Charter of Rights and Freedoms.
They persuaded the courts to order the province to pay up, but B.C. officials dug in their heels, both because of the big price tag and the spectre of copycat litigation on behalf of other treatments not covered by medicare.
So next week the two sides will appear before the Supreme Court of Canada for the final showdown in their six-year battle. As well, the court will hear a companion case that seems to be the flip side of the coin. Montreal doctor Jacques Chaouilli and a frustrated patient, George Zeliotis, hope to strike down a ban on paying privately for services that medicare does cover.
In each case, the ruling could shake the foundations of Canada's health-care system.
"What we have," says David Stratas, a constitutional-law expert in Toronto with the firm of Heenan Blaikie, "is a direct conflict between the legislatures, which are accountable to the people and make decisions as their traditional, core function, and the broad power of the courts to draw the line and do what is appropriate."
The fact that the hearings come during an election campaign with health-care spending a central issue only ups the ante, he adds.
Patrick Monahan, dean of York University's Osgoode Hall Law School, calls the cases "hugely important" and their juxtaposition "striking" because they "come at this health-care question from both directions."
The B.C. challenge centres on equality rights and the Quebec case invokes the right to life, liberty and security of the person, but they have one common feature: Both invite the judiciary to brush past dithering or cost-conscious politicians and bureaucrats to assume a direct role as custodians of health care.
The autism case accuses B.C. of outright discrimination. Lower-court judges have found the Lovaas treatment medically necessary and, in orders that bristle with indignation, instructed the province to contribute up to $20,000 a year for children under 6 and up to $6,000 a year after that.
The province has fought back with a vengeance, outraged by what it sees as a dangerous incursion into its budget-setting priorities. "Simplistic" funding orders endanger medicare, it warns, and change the balance of power in Canada. Plus there just aren't enough dollars available to remedy every affliction.
In a brief to the court, B.C. government lawyers Geoffrey Cowper and Lisa Mrozinski accuse the lower courts of assigning "a blunt, almost malevolent quality" to the mechanics of government. "By judicial fiat, [the rulings] avoid the necessarily uncomfortable and complex process of allocating limited health-care dollars amongst the many needy and meritorious users of the health-care system."
The province also says the cost will be between $50-million and $75-million. "Real choices often entail the onerous responsibility of saying no," the brief concludes.
In return, Ms. Freeman accuses the province of trying to spook the court by predicting a flood of copycat demands. She considers the attitude toward autism unique. "I challenge them to find another serious condition that isn't covered by the health-care system. There aren't any. And if there were, they would deserve to be funded."
No one involved in the suit wanted to spend years in costly litigation, Ms. Freeman says. "It was a last resort after being ignored for years. The political system really doesn't work for small, powerless minorities. And if the Supreme Court of Canada doesn't have jurisdiction to protect equality rights for the most vulnerable group in society, disabled children, why do we have a Supreme Court? And why do we have a constitution?"
After months of excruciating pain as he waited for a hip replacement, Mr. Zeliotis challenged Quebec's ban on private health-care insurance as a violation of his constitutional right to life, liberty and security of the person. He and Dr. Chaouilli are effectively asking if the court has the gumption to strike down laws that prevent those with the means to obtain private treatment from doing so.
"You could not have a starker collision than the one here," Heenan, Blaikie's Mr. Stratas says of the clash between an individual's rights and the role of government in designing social programs.
Dr. Chaouilli, 52, immigrated to Quebec from France in 1977. He began his quest to alter medicare after the province enforced a prohibition on emergency house calls. "I had some very sick and paralyzed patients," he explains. "Some of them couldn't even move." He refused to comply, was penalized and decided to opt out of medicare.
But that was no answer, either. Since private medical insurance is prohibited, only the wealthy could afford his services. Disgusted by what he considers a bureaucratic system that fails the needy, Dr. Chaouilli returned to medicare and launched a court action he says has cost about $600,000.
Many of his medical brethren "like to sit in their offices and make their money there," he says. "Doctors, generally speaking, are lazy. My patients are desperate. When I say I have to send them to a hospital emergency room, it is like a punishment. Some are very angry. They were begging me to go to court and break down this crazy system."
However, medicare proponents warn that commercial providers will inevitably skim off the most profitable procedures and the wealthiest patients, leaving the most costly and challenging work for the depleted public system.
"They are arguing for recognition of the right to make a choice that depends first and foremost on the individual's wealth," the federal government argues in a brief to the court. "No one, in this day and age, would dare suggest that the private health-care sector be left entirely to market forces."
Dr. Chaouilli insists that he is not out to kill medicare; he just wants to see a blend of "healthy competition between public and private providers."
His cause is supported by a group of private clinics in Vancouver that have added a wrinkle of their own: a "guarantee of timely treatment" to the Canada Health Act.
Other intervenors will suggest further options if the court is in an activist mood. "What we are trying to do is force changes," says Osgoode Hall's Mr. Monahan, co-counsel for a group of senators who recently scrutinized medicare. "There is a real impasse -- and this forces politicians to address it."
Unlike the autism case, the Quebec challenge has failed at each stop along the way to the Supreme Court. A united front presented by the litigants has also come apart. Dr. Chaouilli openly accuses Mr. Zeliotis, and his own lawyers, of polluting the case with recommendations such as permitting people to buy time in hospital operating rooms, which he fears will lead to accusations of "queue-jumping."
He also dismisses Prime Minister Paul Martin's campaign promises to fix the system. "These politicians are not honest intellectually," he says. "No wonder so many doctors leave the country."
Scientific studies and reports will play a big role in the cases. In the autism appeal, for example, B.C. will try to discredit the Lovaas therapy. The other side will insist that providing therapy early enough can prevent up to $2-million in social costs for an autistic child who ends up in an institution. If true, this seriously blunts the government's claim that it can't afford ABA.
Will the court pay silent heed to the campaign promises to fix medicare, and leave it to Parliament to make reforms? Will the judges wash their hands of the autism problem, saying governments are elected for just this type of decision?
In any event, a split seems likely, and the vote could be perilously close. Which, says Mr. Stratas, the constitutional law specialist, makes the next appointments to the court supremely important.
Two seats are about to come open, and "ironically, for those who consider the Supreme Court to be anti-democratic, who we choose in this close election may determine who fills the two vacancies on this narrowly divided court. And that could tip the balance in the complex cases to come."
For the time being, Ms. Freeman insists that she, her husband and Miki will happily take their chances with whoever occupies the bench next week. "I believe in the judiciary," she says. "So far, they have successfully ferreted out the truth."
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News : Autism services not meeting demand
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Posted by Sylvia on Thursday, June 03, 2004 (11:47:11)
National Nine News 03/06/2004
Support services for autistic children and their parents are severely lacking, the Autism Association says.
Of the estimated 11,000 autistic people in NSW, only about 3,400 have intensive help with education and communication, NSW Autism Association chief Adrian Ford said.
"The need has grown exponentially in the last 10 years and services aren't keeping up with demand - we're not nearly able to meet the need," Mr Ford said.
"Where services are available they range from two hours a week to a day a week, but from the family's point of view they should be 168 hours a week."
Early intervention can make an enormous difference to the ability of an autistic child to communicate and cope with change, he said.
Respite care also was lacking, Mr Ford said.
"There are nowhere near enough respite services for carers of people with intellectual disabilities, let alone those with autism where the service needed is highly specialised," he said.
Simple daily routines such as eating and dressing can be major hurdles for people with autism, who have difficulties communicating and often do not cope with breaks in routine.
Daniella Dawes, 39, has been sentenced in the NSW District Court to a five-year good behaviour bond for the manslaughter of her autistic son Jason at their home on August 4 last year.
Dawes pleaded guilty to manslaughter on the grounds she had diminished responsibility for the killing because she was suffering from a mental illness at the time.
During her sentencing hearing, the court was told Dawes had tried and failed to obtain adequate intervention and intensive support services for her son.
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