Autism Reality

An Autism Question for the Hon. Stephane Dion

 

 

2007-06-05

The Hon. Stephane Dion, P.C., M.P.
Leader of the Official Opposition
Liberal Party of Canada

Dear Mr. Dion

An Autism Question

I am the father of two sons one of whom has classic Autism Disorder, with profound developmental delays, and I have been an autism advocate for the last eight years. This year I watched hopefully, but with no illusions, as Liberal MP Shawn Murphy of Charlottetown introduced Bill C-304, a Private Member’s bill, which would called for amendment of the Canada Health Act to provide coverage for autism treatments. As expected, Bill C-304 was defeated by the governing Conservative Party and its partner, the Bloc Quebecois. The Liberal Party and the New Democratic Party both voted, by and large, in support of Bill C-304. You personally cast a vote in support of the Bill.

Autism is a serious neurological disorder which affects 1 in 150 Canadians, including 1 in 94 male Canadians. Persons with an autism disorder can display a wide range of deficits including intellectual, communication, behavioural and social deficits. While no known cure exists, a treatment which has been empirically demonstrated in hundreds of studies to decrease the negative autism deficits, and in some cases virtually eliminate, these deficits exists. Applied Behaviour Analysis (ABA) has been demonstrated to improve the abilities in all these areas and improve the quality of life of autistic persons in hundreds of studies. Effective, early and intensive intervention with ABA, in addition to being effective in treating autistic children, has also been shown to save governments very substantial sums of money in provision of government services over the life of an autistic person.

Despite these facts, governments in Canada have an atrocious record in dealing with the Autism Crisis which confronts Canada and in helping these very vulnerable people. In British Columbia and Ontario governing parties reversed election campaign promises to provide medicare coverage for autism choosing instead to spend hundreds of thousands of tax payer dollars to fight in court the parents of autistic children they had pledged to help. Mr. Dion I hope that you will not follow these shameful precedents, I hope you will not forget your vote in support of Bill C-304.

Mr. Dion, will you tell me, and other parents and caregivers of autistic children and persons, if the Liberal Party of Canada will, once elected, introduce legislation in the first year of your taking office as Prime Minister, to include autism treatment in medicare for all Canadians with autism regardless of residence and regardless of income?

Respectfully,

Harold L Doherty
Fredericton
New Brunswick

June 10, 2007 Posted by | advocacy, applied behaviour analysis, auitsm disorder, autism advocacy, autism treatment, Bill C-304, Canada Health Act, Liberal Party, Stephane Dion | Leave a comment

Autism Youth and Adult Residential Care & Treatment Still Abysmal in New Brunswick



In October 2005 the Toronto Star reported on the case of a New Brunswick autistic youth who was being housed by the Province of New Brunswick on the gounds of a youth correctional facility. The youth had committed no crime. The state of New Brunswick’s youth and adult residential care and treatment facilities was so bad, virtually non-existent for those with more severe and challenging autism disorder, that the province felt it was the only place that could accommodate the youth while they waited for his admission to a facility in the United States. The Toronto Star article follows this comment. Unfortunately, as the letter from Stephen Robbins posted here a couple of days ago indicates things have not improved any since then. In New Brunswick we must still export our autistic youths and adults out of the country for decent residential care and treatment.

From a personal perspective this issue weighs heavily on my mind. My son Conor was 9 at the time of the first story. He is now 11 and nearing the age of the two youths in these stories. In the meantime youth and adult residential care and treatment in New Brunswick have not moved a single steop forward. The bureaucracy does what the bureaucracy always does. It delays, it denies that problems exist, it worries about the careers of its members and whether they might be embarassed but it takes no significant action on critical issues affecting some of New Brunswick’s vulnerable members.

Autistic boy kept in New Brunswick jail

No other place for him to stay 13-year-old must go to U.S. hospitalNo other place for him to stay

13-year-old must go to U.S. hospital

The Toronto Star, KELLY TOUGHILL, ATLANTIC CANADA BUREAU, Oct. 19, 2005

HALIFAX—A 13-year-old autistic boy now living in a New Brunswick jail compound will be sent out of Canada because there is no home, hospital or institution that can handle him in his own province.

Provincial officials confirmed yesterday the boy is living in a visitor’s apartment at the Miramichi Youth Centre and will be moved to a treatment centre in Maine by November.

They stressed he is not under lock and key, has no contact with other inmates and is living outside the high wire fence that surrounds the youth detention centre.

Nevertheless, the jailhouse placement and the transfer to Maine have outraged mental health advocates and opposition critics.

“They put this boy in a criminal facility because he is autistic,” said Harold Doherty, a board member of the Autism Society of New Brunswick.

“Now we are exporting our children because we can’t care for them. This is Canada, not a Third World country.

“We are supposed to have a decent standard of care for the sick and the vulnerable, but we don’t.”

Liberal MLA John Foran echoed his concern. “This boy has done nothing wrong, is not the subject of any court order, but is in a penal institution.”

Provincial officials yesterday insisted critics are misrepresenting the nature of the boy’s situation and that in fact the province has done everything it can to help him.

“This individual is not being held, and is not incarcerated,” said Lori-Jean Johnson, spokeswoman for the family and community services department.

“He has housekeeping, bath and a separate entrance. We are just utilizing existing resources.”

Privacy laws prevent officials from discussing anything that would reveal the boy’s identity, including details of his previous living situation and the whereabouts of his parents.

This much is known: He suffers from a severe form of autism and is a ward of the state, under the guardianship of the minister of family and community services. He was living in a group home until recently, but became so violent that he was judged a danger to himself and others. At a psychologist’s recommendation, he was moved to a three-bedroom apartment on the grounds of the Miramichi Youth Centre, a prison for about 50 young offenders. Two attendants from a private company watch the boy around the clock, at a cost to taxpayers of $700 a day.

Johnson said she does not know any details of his care.

Doherty said the jailhouse placement and move to Maine highlight the desperate need for better services for autistic children in New Brunswick and across Canada.

He said staff at most group homes in New Brunswick aren’t trained to deal with autism and don’t understand the disorder.

“If you don’t understand autism, things can become very bad very quickly,” said Doherty, who has a 9-year-old son with the disorder.

“We have been pushing for (better facilities) in New Brunswick for several years. This is not a crisis that has popped up in the last two days. Residential care is a critical element for these people and it is not being provided.”

Johnson said the provincial system of group homes and institutions that care for children and adults with psychiatric disorders and mental disabilities works for most people.

“We do have existing resources, but once in a while, there will be an exception. Here, we are looking at a very extreme case.”

The boy will be moved to an Augusta, Me., treatment centre at the end of the month, said Johnson.

The centre, run by a non-profit group called Spurwink, specializes in dealing with autistic adolescents.

A Spurwink representative did not return a phone call from the Toronto Star.

Provincial officials could not detail the cost to keep the child at Spurwink, nor did they have information about why he’s being sent to Maine, rather than a Canadian facility in another province. “

….

Keep autistic children in the province

Daily Gleaner (Fredericton NB)

Published Wednesday May 23rd, 2007
Appeared on page C7

This is a letter to Premier Shawn Graham.

I am a father of a 13-year-old autistic boy. We had to fight for services for our son from the day he was born: to get diagnosed, to get Applied Behavioural Analysis therapy (before it was mandatory), to get teacher’s aides in the classroom, to keep him in school, and to get hospital treatment when his compulsion to bite and pinch got to the point where he was covered in wounds and bruises.

I am afraid my wife and I do not have much fight left in us these days. Our son has lived under constant supervision 24 hours a day for the last year. Two workers stay in our home with him during the day (two are needed to restrain him during his rages). While we commend them for all they have done, the workers are merely a Band-Aid solution.

Our only option at this point is to send our son out of country to the U.S. for treatment that he desperately needs.

Services at the two facilities, in Maine or Boston, will cost the government $200,000 to $300,000 a year. Right now my son is costing the government $15,000 to $20,000 a month because of the government’s lack of direction when it comes to older autistic children.

My question to you, Mr. Graham, is that it may have been cost effective at one time to send these children away (out of sight, out of mind). But now with it being 1 in 150 children being diagnosed within the autism spectrum disorder, maybe we should re-evaluate the direction our province is going in.

I realize that there may be no other recourse for my son but to be sent to these facilities in the U.S. for treatment.

I hope in the future we may be able to prevent our children from having to leave Canada to get the services they so desperately need.

Stephen Robbins

Woodstock, N.B.

May 25, 2007 Posted by | adult autism, autism disorder, autism residential care, Autism Society New Brunswick, autism treatment, Spurwink | 3 Comments

Autism Plea – Keep Our Autistic Children Home in New Brunswick



Daily Gleaner (Fredericton NB)

Published Wednesday May 23rd, 2007
Appeared on page C7


Keep autistic children in the province

This is a letter to Premier Shawn Graham.

I am a father of a 13-year-old autistic boy. We had to fight for services for our son from the day he was born: to get diagnosed, to get Applied Behavioural Analysis therapy (before it was mandatory), to get teacher’s aides in the classroom, to keep him in school, and to get hospital treatment when his compulsion to bite and pinch got to the point where he was covered in wounds and bruises.

I am afraid my wife and I do not have much fight left in us these days. Our son has lived under constant supervision 24 hours a day for the last year. Two workers stay in our home with him during the day (two are needed to restrain him during his rages). While we commend them for all they have done, the workers are merely a Band-Aid solution.

Our only option at this point is to send our son out of country to the U.S. for treatment that he desperately needs.

Services at the two facilities, in Maine or Boston, will cost the government $200,000 to $300,000 a year. Right now my son is costing the government $15,000 to $20,000 a month because of the government’s lack of direction when it comes to older autistic children.

My question to you, Mr. Graham, is that it may have been cost effective at one time to send these children away (out of sight, out of mind). But now with it being 1 in 150 children being diagnosed within the autism spectrum disorder, maybe we should re-evaluate the direction our province is going in.

I realize that there may be no other recourse for my son but to be sent to these facilities in the U.S. for treatment.

I hope in the future we may be able to prevent our children from having to leave Canada to get the services they so desperately need.

Stephen Robbins

Woodstock, N.B.

May 23, 2007 Posted by | autism disorder, autism treatment, New Brunswick | Leave a comment

Autism & ABA – "Life Just Keeps Getting Better" for Jack Fraser


Dealing with it … autism sufferer Jack Fraser enjoys time with his mum Charmaine. / The Daily Telegraph

In “Autism epidemic being ignored” Sunday Telegraph, May 12, 2007, Zoe Taylor describes the autism epidemic in Australia where a recent federal government-funded review of research into autism concluded there was scientific evidence of the effectiveness of therapies including applied behaviour analysis – which draws on research dating back more than 40 years. Despite knowledge in Australia of the efficacy of ABA as an autism intervention the treatment remains underfunded, good news for those who view autism as a “joy” but bad news for families struggling to cope with the realities of autism, families trying to help their autistic children. Amongst the hardship though are stories such as those of Jack Fraser, a young autistic boy whose family has done whatever was necessary to fund ABA treatment for him, with great results for Jack.


Charmaine and Anthony Fraser had to move from Newcastle to Sydney and cash in their Super twice in order to fund ABA therapy for their son five-year-old son Jack.

The couple, from Wollstonecraft, face annual bills of around $60,000 for the treatment which includes one-on-one home therapy sessions every weekday morning and afternoon.

They have seen vast improvements in Jack, but he is unlikely to be able to attend a mainstream school so they are considering sending him to a specialist private school.

Mrs Fraser said she had no regrets about funding the therapy, but was angry there was no Government help.

She added: “When Jack was diagnosed we were devastated at that thought of what life might be like for him. Now he can talk. ABA is hard work, but it has opened up a whole range of opportunities for him. Life just keeps getting better.”

http://www.news.com.au/sundaytelegraph/story/0,,21713139-5006007,00.html

May 12, 2007 Posted by | aba, applied behaviour analysis, Australia, autism disorder, autism treatment | 1 Comment

Dear Prime Minister Harper – Autism and You; An Open Letter Asking You to Open Your Mind, Open Your Heart



Prime Minister Stephen Harper

Dear Prime Minister

I am writing to you as the father of a severely autistic 11 year old boy living in Fredericton, New Brunswick and as an autism advocate for the past 8 years here in New Brunswick. Recently I was disappointed, bitterly disappointed, by two actions by your very tightly controlled government – the rejection of MP Shawn Murphy’s motion to amend the Canada Health Act to ensure autistic children, wherever they reside in Canada, would receive government funded treatment for their autism. Canada as a nation has long ago rejected the notion that accidents of geography should determine whether Canadians receive life sustaining or life enhancing medical treatment.

The arguments about constitutional jurisdiction advanced in justification are specious and you sir, with all due respect, know that. Canada has long operated on the basis of a model of cooperative federalism which has developed many legislative tools to ensure that narrow constitutional boundaries do not impair the quality of life in this great country. I will mention no specific examples because there are far too many for this to be a serious issue of contention.

Autism is a serious neurological disorder borne by 1 in 150 Canadians by currently accepted estimates. It also impacts on the lives of parents, siblings, grandparents and other caregivers. There is no known cure but there is a widely acknowledged, evidence based treatment available, Applied Behavioural Analysis, or ABA, which is supported by literally hundreds of studies, including recent studies, which document the effectiveness of ABA in improving the IQ, the linguistic skills and comprehension, the ability to function in the real world, of children with autism. In my son’s case, even with the limited ABA therapy which was available in New Brunswick at the time because of a shortage of trained personnel, he has made tremendous gains. From a child who could only scream and tantrum he became a child who can communicate using words, who is reading, albeit at a level below his chronological age, and who in fact almost daily pulls out books on his own initiative to real aloud for his own enjoyment. This is the ABA which parents seek across Canada, the USA and the world for their autistic children.

There are those who oppose ABA based on personal preferences, outdated and ill founded misconceptions about what ABA involves and quite simply on the basis of paranoid, conspiratorial beliefs that somehow they as human beings, as functioning adults, will be deprived of their personalities if someone else’s autistic children are taught fundamental living skills by use of ABA. They make stretched and tortured arguments about ABA turning children into robots. This is nonsense as they happy joyful pictures of my son which I will provide a link for in this letter can rebut with finality. They also make disingenuous attacks on the studies which have documented ABA based gains for autistic children ignoring the fact that literally hundreds of such studies exist all showing substantial gains. Critics also focus on costs of providing ABA ignoring the studies that have shown the huge financial savings to government in reduction of service provision over the lives of autistic persons who have benefited from ABA.

I do not actually expect you to personally read this email Prime Minister. I hope though that a conscientious staffer or, through the marvel that is the internet, a family member or friend, will see fit to read this and implore you to take action on behalf of Canadians with autism. You can make a difference in the lives of 1 in 150 Canadians Prime Minister. You can make a difference in the lives of their loved ones and care givers and you can save Canadian governments enormous sums by reducing the level of services required as a result of early intensive ABA intervention.

Please open your mind Prime Minister, open your heart, and do the right thing.

Respectfully,

Harold L Doherty
Fredericton New Brunswick

May 9, 2007 Posted by | aba, Applied Behavioural Analysis, autism disorder, autism treatment, Canada Health Act, Shawn Murphy, Stephen Harper | 3 Comments

GFCF Diet Treatment for Autism Unsupported by Evidence


One of the persistently promoted treatments for autism is the GFCF diet – a treatment with no evidence to support its efficacy in treating autism. We tried it with Conor several years ago with no result. Anecodotal evidence, which is available to support ANY therapy, keeps the treatment popular with parents. The GFCF diet treatment is pushed on the internet, even by some who know there is no scientific evidence to support the diet as an effective autism treatment. Unfortunately, parents will continue to spend time, money and their hopes on this and other non evidence based treatments.


“Science disputes autism’s diet link

HAYLEY MICK

From Monday’s Globe and Mail

May 8, 2007 at 9:13 AM EDT

TORONTO — Tina Szenasi’s quest to cure her two autistic sons began with soy milk.

Ms. Szenasi switched to the milk substitute after reading testimonials from other parents who said their autistic children’s symptoms had improved – even disappeared – when dairy and wheat were eliminated from their diet.

Her doctor dismissed it as farfetched. But the mother of three from Barrie, Ont., felt she had no choice but to try the gluten-free, casein-free (GFCF) diet for her boys, whose neurological disorder made them easily distressed and socially isolated. Introducing the diet “gave me a sense of hope,” she says.

She quickly transformed her kitchen into a culinary laboratory. Her butterless cookies crumbled. Cakes made using rice flour were a disaster. Grocery bills topped $500 each week as she ordered gluten-free bread and potato-based milk substitutes that weren’t available in her small city.

But her sons improved within weeks, she says. Now, Adam, 11, often hugs his parents and has fewer tantrums. Alex, an eight-year-old soccer and video-game enthusiast, behaves like most other kids. “He’s almost fully recovered, I think because of the dietary intervention,” Ms. Szenasi says.

More Canadian parents are adopting the controversial diet for their autistic children as support spreads through a fringe group of health professionals, commercial websites and chat forums. Supporters say gluten and casein are not well digested by autistic kids, who often exhibit digestive problems and food allergies.

The protein compounds, they say, wreak havoc with the children’s neurological development. To eliminate those triggers, parents spend thousands of extra dollars on special foods, vitamins and enzyme supplements as well as laboratory testing in the United States.

But most mainstream scientists remain skeptical of the gut-brain connection in autism. They say there’s no scientific proof that the diet works. Some doctors warn that parents’ desperation, paired with the mystery surrounding autism’s causes, makes the field ripe – as a top American pediatric gastrointestinal specialist put it – for “charlatanism.”

“If there’s nothing else that you think is going to help and you’re desperate, you’ll do anything,” said Wendy Roberts, the head of the autism research unit at the Hospital for Sick Children in Toronto.

The GFCF diet eliminates two major food groups from an autistic child’s diet: dairy products, which have casein, and grains such as wheat, barley and rye, which contain gluten. Children on the diet often eat a lot of meat and vegetables, plus wheat and dairy alternatives. Some families add vitamin and enzyme supplements.

Even supporters say it isn’t clear how the diet works. One explanation involves the “leaky gut syndrome.” Undigested bits of protein, according to this theory, are absorbed through the intestine into the body, affecting the brain and producing symptoms associated with autism.

To date, only one double-blind controlled clinical trial – the gold standard for health research – has tested the diet. Published in March, 2006, in the Journal of Autism and Developmental Disorders, the study found that the group of children on the diet saw no significant improvements compared with the control group. Researchers say more testing is needed because the study was based on a small sample.

“The information that’s out there suggests that the diet probably does not have a substantial effect on children’s behaviours,” says Lonnie Zwaigenbaum, a University of Alberta associate professor and director of autism research at Edmonton’s Glenrose Rehabilitation Hospital.

Yet almost every parent Dr. Zwaigenbaum sees has either tried the GFCF diet with their autistic child or heard of it, he says. Parents are leaping ahead before science has definitively proved whether such a treatment works, he says, because there are compelling anecdotal cases of improvement.

Autism’s causes have long stumped experts. They know that genes play a major role – but increasingly, with diagnosis of the condition on the rise, researchers are looking to environmental triggers including prenatal hormones, toxins, food allergies and infections. As a result, treatments such as the GFCF diet, which focus on removing such triggers, are gaining ground.

“It’s word of mouth,” say Paul Cutler, a family doctor based in Niagara Falls, N.Y., who works one day a week in Burlington, Ont. “Thanks to the Internet, they’re finding these alternatives.”

About half of Dr. Cutler’s 200 autistic patients are Canadian, and they travel to his offices from across Ontario and Quebec. He charges $150 for an initial assessment that includes a battery of tests – a cheap fee compared with other doctors, he says.

Dr. Cutler has been trained by a group called Defeat Autism Now! (DAN!), which holds annual conferences and instructional sessions for doctors from across North America. The group recommends biomedical treatments for autism that focus on intestinal problems, nutrition, detoxification and allergies. Twenty-six Canadian doctors are listed on the group’s website as DAN! practitioners.

They include Wendy Edwards, a pediatrician in Chatham, Ont., who found the diet four years ago when her three-year-old son was diagnosed with autism. He improved so dramatically, she says, that the diet is now the first thing she recommends for autistic patients who travel to see her from across Ontario and even Manitoba. She also encourages other biomedical treatments, including supplements such as vitamin B6, magnesium and dimethylglycine, or DMG.

Some research suggests that up to 40 per cent of children with autism spectrum disorders could benefit from dietary changes, including the removal of gluten or casein, says Timothy Buie, a pediatric gastrointestinal specialist at Massachusetts General Hospital in Boston.

But Dr. Buie, who runs one of the largest practices for children with developmental disabilities in the United States, warns that parents may place so much hope in the diet that they falsely believe their child has improved. “The placebo response is gigantic,” he says. “Parents can interpret a benefit because they want their kid to do better.”

While parents travel to find doctors, they also ship urine and stool samples to U.S. labs to be analyzed for nutrient and vitamin deficiencies – tests that aren’t widely available in Canada. One parent interviewed for this story said she paid up to $300 (U.S.) each for several lab tests.

Some in the industry may be peddling false hopes for big profit, critics warn. “People may choose to recommend things therapeutically that are in their financial interest,” Dr. Buie says. “You walk out of a doctor’s office and they give you a list of vitamins that they happen to be selling in their outside room.”

Other doctors worry about the role of for-profit labs. “Many are not bona fide labs and they’re making a fortune,” says Dr. Roberts at Sick Kids in Toronto, who adds that parents have handed her results from U.S. labs that don’t make any sense.

The Internet is where many parents go to share information, recipes and contacts. Brenda-Lee Olson from Terrace, B.C., moderates a popular online group called GFCFrecipes, whose membership has multiplied tenfold, to 3,400, in the past six years.

“It helps to know certain tricks,” says Ms. Olson, who says many people don’t believe her 17-year-old son is autistic, thanks to the diet. “The only way to get that information is from other parents.”Ms. Szenasi says she’ll keep her children on the diet despite the cost. She now keeps a folder stuffed with GFCF diet material at the health-food store where she works, so she can hand it out to other parents.”

May 8, 2007 Posted by | anecdotal evidence, autism disorder, autism treatment, DAN, evidence based interventions, GFCF diet | 15 Comments

Autism Presents Daily Challenges for Parents

The following excerpt from the Lake Sun article on the daily challenges faced by parents in living with their child’s autism illustrates that one of the old problems – parents concerns being brushed aside by doctors and pediatricians – is still occurring and still costing the children involved valuable time when they could be receiving active intervention. For intervention the earlier the better. But this valuable time is squandered when lazy or out of date physicians tell parents they are over reacting – or the old classic – he’s a boy he’ll grow out of it.

Living with autism presents daily challenges for parents

By Deanna Wheeler/Lake Sun

Published: Monday, April 30, 2007 12:16 AM CDT

TUSCUMBIA – Amanda Phillips knew something was wrong with her son, Owen, when he was 16 months old. Looking back, she describes the symptoms generally. First it was the tip-toe walking, then he flapped his hands and arms a lot, and finally, it was the loss of the few words he did know.

‘Looking back now, I can’t even pinpoint when he stopped talking. I just remember thinking, ‘He’s not saying any new words. He’s not even really saying the old words,” she said. ‘I brought up autism to his pediatrician because every time I typed in those symptoms in a search engine on the Internet, everything that came up was leading to autism sites.’

The pediatrician brushed off Phillips’ concerns as an over-reactive parent, but Owen’s symptoms did not improve. By age 2, Owen still was not talking and at 27 months, Amanda got the diagnosis – autism.

‘You know, it really wasn’t a surprise,’ Amanda said. ‘You still have that hope that the doctor will tell you he’s fine, but I knew. I knew all along.’ … Owen is non-verbal. The few words he once knew, he has never spoken again. About 25-30 percent of children with autism say some words at 12-18 months, but lose them, according to the Department of Health and Human Services Centers for Disease Control and Prevention’s Web site.

Another 40 percent of children with autism do not talk at all. Others with autism have relatively good verbal skills. Some may be able to speak, but not form words into meaningful sentences; others may repeat the same phrase over and over again.

Another common problem in autism is social skills. ……..

http://www.lakesunleader.com/articles/2007/04/30/news/01.txt

April 30, 2007 Posted by | autism awareness, autism diagnosis, autism disorder, autism treatment, parents, pediatricians | 2 Comments

Autism & HBOT – Hyperbaric Oxygen Is NOT An Evidence Based Treatment for Autism


I have blogged previously on Hpyerbaric Oxygent Treatment as a treatment for autism. At this point in time HBOT is NOT considered to be an evidence based treatment for autism. There is a study going on which MAY or MAY NOT change that fact but for the present, as the authorities reviewed in the Chicago Tribune indicate, there is NO evidence to support the effectiveness of HBOT in treating autism.

http://tinyurl.com/2apv44

Parents turn to long-shot therapy for autism

By Kirsten Scharnberg
Tribune national correspondent
Published April 23, 2007, 7:48 PM CDT

HONOLULU — Kalma Wong has tried almost everything for her two autistic children: special diets, intense behavioral therapies, flying in experts from the U.S. mainland at exorbitant costs.

Some efforts have yielded modest success. Others have done next to nothing.

But like many other parents of the more than 500,000 children that the Centers for Disease Control estimates to be autistic in the U.S., Wong has vowed to keep trying until she pinpoints the treatment that most helps her kids.

Her latest attempt is one of the most long-shot therapies yet, a protocol some doctors praise but that others declare to be a waste of time that gives desperate parents false hope and exploits them financially.

It is called hyperbaric oxygen therapy, a treatment in which pure oxygen is delivered to patients confined to pressurized chambers for an hour a day for several weeks. The theory is that the extreme doses of oxygen essentially the same kind of treatment that has been used for decades to cure divers with decompression illness will spur dormant or damaged neurons in the brain to become reinvigorated or even transformed.

In the case of children with autism, considered the fastest-growing developmental disability in the U.S. today, the new treatment is claimed to have produced some stunning results: transforming non-verbal children into fluent speakers; helping children hypersensitive to outside stimuli become calm enough to attend public schools; changing kids once adverse to any personal interaction or touching into affectionate toddlers.

….

Markley said she has treated more than 30 autistic children with HBOT and “every single child of those 33 had consistent quality-of-life improvements.” The improvements, she said, were more pronounced in kids most afflicted by the characteristics of autism: the repetitive behaviors and the impairments in sensory perception, social interaction and communication.

Critics argue that no studies have been done that use scientific models such a double-blind testing. They caution that the treatment has been tried only on a handful of children affected with autism nationwide, not nearly enough to draw valid conclusions.

“They are making extraordinary claims without extraordinary evidence,” Iyama said.

Evidence is exactly what supporters of HBOT are hoping to get in the coming months. Beginning in May, the Honolulu clinic, along with some 20 hyperbaric oxygen clinics across the U.S., will launch a formal study into how autistic children respond to the therapy. A total of about 400 children will be included, and the results are to be evaluated by the National Institutes for Health.

Other studies are under way that HBOT proponents are closely watching. One of the biggest is a federally funded study on the effects of HBOT on children with cerebral palsy that is under way at Wright-Patterson Air Force Base in Dayton, Ohio.

One group watching the outcomes of these studies is the Undersea and Hyperbaric Medical Society, a non-profit group of doctors that investigates scientific claims linked to HBOT. Thus far the group has been skeptical of using HBOT to help neurological conditions such as autism or cerebral palsy.

“If we just had the evidence we’d be happy to support it. But it just isn’t there,” Dr. Donald Chandler, executive director of the UHMS, has said in statements regarding the therapy….

April 24, 2007 Posted by | autism treatment, Chicago Tribune, evidence based treatment, HBOT, Hyperbarid Oxygen Treatment, parents | 3 Comments

Autism Advocacy – Tony Clement Loses Composure, Lashes Out

The Honorable Tony Clement Canadian Health Minister has lost his composure and lashed out at FEAT-BC because of its plans to hold him accountable for his inaction in addressing Canada’s autism crisis. Mr. Clement expressed his outrage that the FEAT organization would actually organize to bring about his electoral defeat. Mr. Clement accused the FEAT group of being extremists for wanting to amend the Canada Health Act to ensure funding for autism treatment across Canada. Apparently the Liberal and NDP MP’s who voted for that precise measure are also extremists in Mr. Clement’s narrow view. In expressing his outrage Mr. Clement also declared that he is “the hardest-working minister autism advocates have ever had“. How Tony Clement has the audacity to make such a clearly nonsense claims is beyond me. After defeating the motion which would have provided universal coverage for autism treatment in Canada Mr. Clement’s government provided ZERO dollars, $0, for autism in its recent budget. Mr. Clement works very hard at doing what he is told by Stephen Harper but there is no evidence that he has so much as lifted a finger to help the cause of autistic children and adults.

The hardest-working minister autism advocates have ever had? That claim is a stinker if ever there was one Mr. Clement.

http://www.canada.com/vancouversun/news/story.html?id=c1cddc05-246f-4e9c-9455-be53df75eeb3

April 22, 2007 Posted by | autism advocacy, autism awareness, autism disorder, autism treatment, election, FEAT, FEAT BC, Stephen Harper, Tony Clement | Leave a comment

Autism Advocacy in Impending Federal Election


FEAT-BC, which has been at the forefront of autism advocacy in Canada, has heard the message from the Supreme Court of Canada. With two SCC decisions in Auton and Deskin-Wynberg denying the courts as effective avenues for seeking equality protection for autistic children in hand the time is now for political action and FEAT-BC is prepared to jump into the fray – again. The strategy recognizes the need for an effective concentration of effort and resources by targeting ridings of vulnerable politicians who have acted against the cause of autism in Canada. As the attached article from MacLean’s illustrates, FEAT-BC is very interested in one Tony Clement, the federal Health Minister who has fought against Federal government help for autistic persons in Canada , and who did not win by much in his last election.

Watch Out Tony! What goes around comes around!

Warning to low-hanging politicians

Parents of autistic kids take aim at Tony Clement

JOHN GEDDES | April 23, 2007 |

Imagine a Tory who won a seat in the last election by only a few votes. Who would such an MP least want to have to fight, alongside the usual opposition rivals, to survive in the coming campaign? How about enraged, well-organized parents who accuse Ottawa of failing to assure their children of essential medical care?

They might not know it yet, but this unsettling scenario faces certain carefully targeted Conservatives. Parents of autistic children plan to take aim at selected government MPs who squeaked in last time by two per cent of the vote or less. And the most vulnerable MP of all could be the architect of the federal autism policy that has the parents so upset — Health Minister Tony Clement, who won his Ontario riding of Parry Sound-Muskoka last time by a mere 29 votes.

Autism groups are cagey about revealing details of their plan of attack before an election is on. But one Ontario activist told Maclean’s, “Clement is like a pear ready to drop from the tree.” B.C.’s Families for Early Autism Treatment was active in a few closely fought B.C. ridings in 2006. Some of the group’s core members, including director Jean Lewis, are scheduled to attend a meeting in Halifax on May 26 to pass along tactical lessons to East Coast parents of autistic children.

But if Stephen Harper’s minority falls before then, the B.C. firebrands plan to cancel their Halifax event and make a campaign detour to Ontario of up to two weeks. “We will certainly be in Parry Sound-Muskoka,” Lewis said. The B.C. group and their allies demand federal action to extend medicare coverage to full early autism treatment, which can cost $35,000 a year for young children.

Successive federal Liberal and Tory governments have held that deciding what conditions are insured is up to the provinces. Lewis says autism activists will back individual candidates who support their position, but not parties. “When the Liberals were in power,” she said, “they were as pathetic as the Conservatives are now.”

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April 20, 2007 Posted by | autism advocacy, autism disorder, autism health, autism treatment, Canada Health Act, FEAT BC, Jean Lewis, Stephen Harper, Tony Clement | Leave a comment