Thursday, May 31, 2007

Four Strong Autism Winds

Four strong winds that blow slowly
Seven seas that run high
All these things that don't change come what may
Now our good times are all gone
And I'm bound for moving on
I'll look for you if I'm ever back this way

Guess I'll go out to Alberta
Weather's good there in the Fall
Got some friends that I can go to workin' for
Still I wish you'd change your mind
If I asked you one more time
But we've been thru that a hundred times or more

- Ian Tyson

Ian Tyson's Four Strong Winds is viewed by many as Canada's unofficial national anthem, a tale of Canadian migration to Alberta in search of work. Today Alberta continues to draw Canadians in search of work. But it is also a magnet attracting Canadian families with autistic children in search of its government funded autism treatment. In neighboring Saskatchewan meanwhile government funding for autism is virtually non-existent.

In Parliament the Scott-Stoffer private member's motion calling for a National Autism strategy to deal with this national health crisis was passed while the Shawn Murphy bill seeking inclusion of autism treatment under medicare was defeated by the Harper Conservatives and the Bloc Quebecois on spurious jurisdictional arguments. Canada would not have a national medicare system at all if this feeble rationalization was employed consistently. Indeed why do we even have a federal Health Minister, at present Tony Clement, if the federal government has no role to play in health issues? The reality is that prior to the election of the Harper Conservatives Canadians had long recognized the need for federal provincial cooperation to address health issues of national magnitude that might be beyond the ability of smaller or poorer provinces to address.

To most Canadians the hundreds of studies documenting the effectiveness of ABA in treating autism should be enough to justify extending a federal hand to ensure that Canadians do not have to move to Alberta to seek treatment for their autistic children. To most Canadians the fact that 47-50% of autistic children can be rendered indistinguishable from their peers by school age, with intensive behavioral intervention, would be enough to justify federal involvement. For most Canadians the improvement in quality of life, the increased ability to communicate, to function in society, to avoid self injurious behavior would be compelling motivations justifying an effective national autism strategy. Since Stephen Harper is Prime Minister though a different argument, one which does not rely upon empathy or compassion, must be found - studies show that autism treatment saves governments very substantial sums of money, in reduced government services, over the life of an autistic person.

How about it Mr. Harper, how about offering a real national autism strategy to address Canada's autism crisis? You have clearly said no. Still I wish you'd change your mind, if I asked you one more time.

Autism funding drawing parents to Alberta

Last Updated: Monday, January 16, 2006 | 9:37 AM MT

CBC News

Alberta's coverage of an intensive therapy for children with autism is prompting some families to move to the province to receive additional care for their children.

"I used to see easily a kid a month that came to Alberta for autism services," Calgary pediatrician Dr. Neil Cooper said. "Probably it's been 10 years that we've been in this office that we've seen kids come from other provinces, mostly because of the funding."

The therapy – known as intensive behavioural intervention – is time consuming and expensive, but parents like Kim and Mike Stafford say it's worth it.

The Moose Jaw couple moved to Calgary 18 months ago because Alberta's health care system pays for the therapy, which they say has led to a big difference in their son.

When six-year-old Trey was diagnosed with autism, a developmental disorder which can be accompanied by severe problems with social interactions and language, three years ago, it seemed he had retreated into his own world, his parents say.

However, since he's been involved in intensive behavioural intervention, his progress has been remarkable, they say.

For example, although now Trey spends part of each morning spelling words, he could barely even say them a year ago, Kim Stafford said.

"Now he knows all the kids' names in his class. He can write down the names, he can spell them. It's really wonderful to see," she added.

The treatment involves speech therapy, physiotherapy, music and games – between 20 to 30 hours per week. It costs around $60,000 per year.

The Saskatchewan Health Department would only pay for one hour a week, which the Staffords say was inadequate, so they moved to Alberta. Almost immediately, Trey began receiving the full 30 hours, the Staffords said.

Roger Carriere, executive director of the Saskatchewan Health Department's community care branch, said the therapy is expensive and there are questions about its effectiveness. He also noted there are many other priorities competing for Saskatchewan's health dollars.

Wednesday, May 30, 2007

Autism Induced "Excited Delirium Syndrome" ? Or Police Brutality?

A mom is suing police after her autistic son died following a struggle with police. Local police authorities, who apparently are also medical experts, stated that her son died from what they called "autism induced excited delirium syndrome" resulting in cardiac arrests. As the article indicates this purported "syndrome" is often used by police in explaining deaths of certain persons following confrontations with police. Interestingly, a 1999 Salon article on the subject points out that this medical theory was advanced by coroners. Recenlty excited delirium syndrom was cited by an official pathologist in a NB death of a man involved in a confrontation with police. A taser/excited delirium death also arose in Calgary and prompted a sudy of the connection between taser use and deaths from this purpoted syndrome. Apart from being regularly used by police coroners and pathologists to explain deaths of individuals in police custody or confrontations it is worthwile to note that "excited delirium syndrome" is not a diagnosis used in psychiatry:

"Excited delirium is not a diagnosis used in psychiatry,'' says Dr. Roumen Milev of the Mood Disorders Clinic at the Providence Continuing Care Centre in Kingston, Ont.

"It does not exist as such either in the American Psychiatric Association's diagnostic and statistical manual, or in the World Health Organization's international classification of diseases.''

Mom sues in death of autistic son

The Monterey County Herald

Article Last Updated: 05/29/2007 01:43:36 AM PDT

RIVERSIDE (AP) — The mother of an autistic man who died after struggling with Riverside County sheriff's deputies has filed a wrongful death lawsuit.

The suit, filed in federal court last month, accuses deputies of negligence and brutality and seeks unspecified damages in the death of Raymond Lee Mitchell, 21.

Mitchell died in a hospital last July following a struggle with deputies at his Perris home. Deputies responded to the residence after his mother called 911 saying she needed authorities to pick up her son.

Sheriff's officials contend Mitchell died from autism-induced "excited delirium syndrome," a condition that leads to sudden cardiac arrest.

His mother's attorney rejects that claim, saying it's a common defense among law enforcement agencies sued over in-custody deaths.

"That's what they always say," attorney Carl Douglas said.

Douglas believes Mitchell died of positional asphyxiation after several officers piled on top of him.

Sheriff's spokesman Jerry Franchville said deputies are trained for encounters with people with autism, mental illness and other special needs.

Besides what authorities claim is the cause of death, he refused to release results of an investigation into matter.

Some coroners say suspects are dying not from police brutality but an obscure medical disorder.

- - - - - - - - - - - -
By Christian Parenti

Sept. 29, 1999 | America's latest cultural export to the United Kingdom isn't some hot new software or a hip-hop single, it's a controversial medical theory that seeks to explain why so many people die in police custody. The concept, called "excited delirium" (ED) or "in-custody death syndrome," is being put forward by a small but vocal clique of big-city coroners. Proponents of excited delirium argue that most people who die in police custody are not the victims of police brutality, but rather victims of their own cocaine or amphetamine abuse, which can trigger this fatal condition.

Since the mid 1990s excited delirium has been floated as an explanation in several high-profile police custody deaths in the United States. But so far, the "excited delirium" debate has yet to begin in the U.K. Last week, the Royal Society of Medicine in London held a conference on "The Medical Aspects of Death in Custody" due to the record number of people (65) who died in custody last year in England and Wales.

While excited delirium was not proved as the cause of many of these deaths, in other countries, such as Canada, most of the people who died from excited delirium between 1988 and 1995 were in police custody at the time, according to one study. Medical examiners say this may just be the tip of the iceberg, but it's hard to say for sure since nobody tracks the number of ED-related deaths that occur each year.

"You can't prevent most of these deaths," says Dr. Boyd Stephens, chief medical examiner for the City and County of San Francisco. This view is shared by his colleague, assistant medical examiner Dr. Steve Karch, who has just returned from addressing the conference on drugs, restraint and postural asphyxia.

"Whether or not these people [who die in custody] see the police is irrelevant. They could be seeing a seven-headed monster. They're delirious, they get a surge of adrenaline and they die," Karch says. He and others contend that the real cause of death is long-term amphetamine abuse, which causes heart disease and increases neurotransmitters, called Kappa 2 receptors, in the part of the brain -- the lymbic amygdala -- that is responsible for fear. Translation: Speed and crack make you paranoid and prone to heart attacks.

Karch says that being high and paranoid leads to erratic behavior, delirium and a heightened heart rate, often accompanied by a rise in body temperature. All of this, plus a weakened heart, can kill a person, and the police have nothing to do with it, he says.

But not everyone is so impressed by the new theory. A bevy of critics, ranging from police accountability activists, to former cops, to toxicologists and coroners, think Karch and other proponents of excited delirium have turned the causal sequence upside down.

"Most of the people who die in police custody die not from drugs or some mysterious syndrome but from police abuse," says Van Jones, executive director of the Ella Baker Human Rights Center in San Francisco. "Officers choose to escalate confrontations and use force when dealing with disturbed and excited people." Jones points out that many of the cases cited as prime examples of excited delirium or sudden in-custody death syndrome involve gross police misconduct and extreme violence.

The in-custody death of Aaron Williams in San Francisco, which was later attributed to excited delirium, is one such example. In 1995, Williams was chased and beaten by 12 police officers. According to press reports, he was high on drugs and "acting crazy" at the time. Once he was captured, the police twice sprayed him with pepper spray -- a chemical agent that causes gagging and massive mucus production. The police then covered Williams' face with a surgical mask and hogtied him, which consists of manacling hands and feet together behind the back. They then repeatedly kicked him in the head, according to eyewitnesses quoted in press reports. (Although the San Francisco Police Department denies this part of the account.) He was then left untended in the back of a paddy wagon with his face down. Less than an hour later, the prisoner arrived dead at the local cop shop.

Taser alone didn't kill Geldart: pathologist

Last Updated: Wednesday, February 28, 2007 | 5:14 PM AT
CBC News

A temporary condition, not an electronic stun gun used by Moncton police, was likely to blame for the death of a psychiatric patient, an inquest heard Wednesday.

Kevin Geldart, 34, who had walked away from the psychiatric unit at the Moncton Hospital, died in the Right Spot bar on May 5th, 2005, after police used a Taser in a bid to subdue him.

Ken Obenson, the pathologist who examined Geldart's body, told the inquest that in his opinion the primary cause of Geldart's death was "excited delirium," a condition in which a mentally ill person is acutely agitated, violent, sweating profusely and showing an insensitivity to pain.

Geldart showed many of those symptoms, according to previous testimony from four police officers who confronted him at the Right Spot Bar in Moncton. The officers used pepper spray and a Taser, an electronic stun gun, to try to subdue Geldart, who was six-feet-six inches tall, weighed more than 350 lbs., and suffered from asthma.

Obenson said that because an agitated Geldart was wrestling with police, his adrenaline level would have been high.

His potassium level would also have been high, Obsenson said, and that would have protected his heart. However, once restrained, his potassium level would have dropped, Obenson said, and that would have lead to arrthymia, an upset in the heart's normal rhythm.

Obenson said the Taser, pepper spray and Geldart's obesity might have been contributing factors in his death. But even if those factors had not been present, he said, the outcome still would have likely been death.

However, if the condition of excited delirium were removed, and every other factor left in place, Obenson said, Geldart likely wouldn't have died.

'Excited delirium' case raises taser questions

Updated Sun. Mar. 11 2007 5:16 PM ET

Canadian Press

FREDERICTON -- A New Brunswick man's death due to a mysterious malady called excited delirium has raised more questions about police arrest techniques and the growing use of stun guns.

Kevin Geldart, 34, of Moncton, N.B., died after he was repeatedly shocked with Taser weapons by RCMP officers in 2005.

It was another in a long series of deaths in North America following the use of police force and Taser guns to control people who are described as combative, irrational and extraordinarily strong.

In most of these cases, the cause of death is difficult to pinpoint and is often attributed to cardiac arrest, drug intoxication or a combination of the two.

But a New Brunswick coroner's inquest into Geldart's death earlier this month ruled that the large, mentally ill man died of excited delirium _ a condition that cannot be found in medical or psychiatric text books.

"Excited delirium is not a diagnosis used in psychiatry,'' says Dr. Roumen Milev of the Mood Disorders Clinic at the Providence Continuing Care Centre in Kingston, Ont.

"It does not exist as such either in the American Psychiatric Association's diagnostic and statistical manual, or in the World Health Organization's international classification of diseases.''

Critics say excited delirium exists purely in the imaginations of those who are anxious to defend the use of Taser weapons and excessive police force.

Eric Balaban, a staff attorney with the American Civil Liberties Union, says that blaming excited delirium for in-custody deaths could be a way of whitewashing inappropriate use of force by police.

"It's not recognized as a mental-health diagnosis,'' Balaban says.

"It is really used only by medical examiners to attribute the cause of death of an arrestee following a violent scuffle with police officers.''

Whatever excited delirium may be, it is characterized by extreme agitation, incoherence, bizarre behaviour, often superhuman strength and a high body temperature.

It is associated with drug abuse and mental illness, and occurs often in people who, like Geldart, are very large. Geldart was tall and weighed at least 350 pounds.

Family members and friends of people who die during police Taser arrests are almost always unsatisfied with descriptions of the cause of death and the fact that the police are exonerated.

One of Geldart's relatives has called for a moratorium on the use of Tasers until more is known about the effects of the weapon on people, especially on those with mental illness.

So far, 212 people in North America have died following custody struggles with Taser-wielding police officers _ at least 15 of them in Canada, where the weapon has been used since 2001.

In all cases, the stun gun has been cleared of any direct involvement in the deaths, even in cases like Geldart's, where there were eight Taser injuries to his body and head.

"I'm not aware of any case in the world where the conductive energy weapon has been found to be the factor that caused death,'' Sgt. Richard Groulx, an RCMP training and tactical weapons expert, told the New Brunswick inquest.

The Taser delivers a pulsating, 50,000-volt electrical current through the body, and police say it can pierce clothing four centimetres thick.

The shock, which lasts up to five seconds, locks muscles instantly and overrides the central nervous system.

Dr. Deborah Mash, professor of neurology at the University of Miami and a leading expert in North America on excited delirium, says the ultimate goal of her research is to establish a protocol so police know how to handle people exhibiting signs of the condition.

Mash says excited delirium is a real brain disorder.

"There are clearly neuro-chemical changes in the brain,'' she says. "There is a defect. The issue of police brutality is simply wrong. That's not to say it can't occur, but when the police are confronted by someone exhibiting superhuman strength like a Hulk Hogan ... what can they do?''

Mash says the phenomenon came to light in the 1980s, when crack cocaine first burst onto the Florida drug scene.

She says many victims have cocaine or drugs in their systems, although mentally ill people like Geldart, who was bipolar, are also susceptible.

"It doesn't have to be drug-related,'' she says. "There are a number of triggers that will pop the switch.''

Mash says no one knows the best intervention techniques for police when confronted by an individual in the throes of excited delirium.

She says she hopes a standard of practice can be developed.

She also says research may ultimately unlock a clear diagnosis of the disorder, so victims can be identified before they run into trouble.

"Thanks to advances in molecular biology, we have an opportunity to look for the first time for real diagnostic markers, and that's what we need,'' Mash says.

"Link between excited delirium, Taser deaths to be studied

Calgary Herald

Saturday, January 14, 2006

CALGARY -- A Calgary physician is leading a national study to see whether a medical condition that causes violent behavior and superhuman strength can turn deadly when police Taser or pepper- spray suspects.

Dr. Christine Hall is undertaking a three-year analysis of subjects who die in police custody and what role the little-understood disorder, known as excited delirium, may play.

The condition, while not universally recognized by the medical establishment, has been linked to the deaths of several police suspects, including cases in which detainees died after being Tasered or pepper-sprayed.

"We think there's something systematically different from the people who die in custody than the people who don't," said Hall, an emergency room doctor and epidemiologist.

The study will also examine any association between police use of pepper spray or stun guns and custody deaths.

Hall's research, which must still be approved by an ethics review board, follows the Christmas Eve death of a man who was Tasered by Edmonton police after he went into a fit of rage at an intersection.

The Tasers can deliver a 50,000-volt shock to temporarily immobilize a suspect and have been the subject of heated debate in recent years.

While supporters argue they are less lethal than other weapons, groups like Amnesty International blame the stun guns for dozens of police custody deaths in North America.

Hall's research, which has received $1.5 million in funding from the Canadian Police Research Centre, could begin as early as this summer, pending approval from an ethics committee.

She hopes the study will unravel some of the mysteries surrounding excited delirium, a disorder that hasn't been studied extensively.

The condition appears to strike men who are mentally ill or high on drugs.

People suspected of having excited delirium are often agitated, violent, hot to the touch and don't feel pain at all, Hall said.

Hall will work with 11 police forces around the country to collect reports on all suspects who physically resist arrest, comparing the data to reports on suspects who die in custody.

The study will examine whether the suspects exhibited signs of excited delirium and what forms of restraint, such as Tasers, police used in the cases.

"We have to figure out if there's a way to know who the people at risk are," said Hall.

Since the devices came into use in Calgary last October, police officers there have used Tasers 37 times on suspects without any serious ill effects, according to Staff Sgt. Kevin de Villenfagne of the Calgary Police Service.

He said the move to study excited delirium and its relationship to Tasers is helpful for police.

"Anytime we can do research to determine the validity of the tools we're using to ensure we're doing the best with the tools we have, that's a good thing," he said.
Brian Hill
Training is not an expense, it is an investment. "

Tuesday, May 29, 2007

Autism Spectrum Disorder and ABA - Living With Autism

Lexi Cota's tutor, Sara English, coaxes her to repeat an "mmm" sound for a spoon of frosting.
(Journal Photo by Lauren Carroll)

The Winston-Salem Journal has done some excellent work on autism with this article and video Living With Autism. The article, interactive graphic and video do an excellent job of presenting the realities of life for an autitsic child and her family. It is done with a positive, but realistic, presentation of the challenges facing autistic children. And it cuts to the chase in telling parents of autistic children what they need to know. ABA based early intervention is critically important for your child's future. These pieces also present very well the challenges faced by parents in trying to educate their children including the inadequacies of the formal education system in helping educate autistic children.

"The Gordons suspected that Ross had autism when he was 6 months old, said Kristi Gordon, his mother. He never responded to people or toys, and could spend hours spinning things.

The diagnosis was confirmed a year later.

“No matter how much we thought it, it still kind of crushed us,” she said.

Others, like the Cotas, watch their seemingly typical child change into someone they don’t recognize. When she was a year old, Lexi was a charming, typical toddler, one who loved to pop out from behind doorways and say “hi!” Then, when she was about 16 months old, she began to change. She became at turns silent and withdrawn or unruly, running around and flapping her arms wildly. She was diagnosed with autism a few weeks before her third birthday.

No matter when they get the diagnosis, the message that goes with it is the same: Get help now.

Many experts say that children who are placed into therapy as soon as possible have the best chance of eventually living a relatively independent life in which they will be able to have a job, even if their social mannerisms are unconventional.

“When you see them young, and 11/2, 2 and 3, you have no way of knowing which child will respond well to intervention and which won’t. The idea is you provide intervention and treatment when they’re young,” said Dr. Kurt Klinepeter, an associate professor of pediatrics at Wake Forest University Baptist Medical Center and the medical director of Amos Cottage. Amos Cottage is affiliated with Wake Forest and offers services for children with developmental problems.

It’s difficult to tell how many children have other conditions that co-exist with the autism. About 30 percent of autistic children will have IQ scores in the normal range. Those children will have the best chance at eventually living independently, with jobs and typical lives - not just because they score well, but also because they have to be on the higher-functioning end of the autism spectrum to be able to take an IQ test at all, Klinepeter said.

The other 70 percent aren’t necessarily mentally retarded, he said. They could be more affected by the communication and social aspects of the disorder, which would make it nearly impossible to correctly administer an IQ test.

Children who are suspected of having autism usually end up at the county’s early-intervention program, either through a referral from a doctor or day-care worker, or because the parent is concerned enough to want an evaluation.

If the child is autistic, the county is in charge of providing therapy until the child turns 3, through the Children’s Development Service Agencies. Children can receive a combination of speech, occupational and physical therapies. Some also receive therapy through the ABC of NC center. It is paid for by Children’s Development Service Agencies.

Many parents want their children to receive Applied Behavior Analysis. The National Institute of Mental Health, the leading federal agency for research on mental and behavioral disorders, said that ABA has “become widely accepted as an effective treatment” in its booklet about autism. ABA is the only treatment specifically mentioned in the booklet.

Monday, May 28, 2007

AutismRealityNB Stanley Cup Prediction - Ottawa Wins Stanley Cup 4 Games to 2

You heard it here folks. Ottawa Senators will win the Stanley Cup 4 games to 2 over the Anaheim Ducks. Sorry to break the news to Anaheim Ducks fans.

Sunday, May 27, 2007

Autism Advocacy - FEAT BC Makes A Big Splash on the East Coast

The people from FEAT BC put a lot on the line with this tour. They invested money, sweat, credibility and time, including precious time away from their families, to make this trip across Canada and out to the East Coast to fuel a national effort to get autism covered by medicare. They did not come in to preach to the locals though. They came to talk and encourage all of us to get together and GET POLITICAL. If you are a Canadian parent seeking medical treatment for your autistic loved one NOW is the time to get involved. You can contact Jean Lewis via email at Or you can reach me at NOW is the time not tomorrow.

If you are a member of a local or provincial autism group which receives government funding to operate they may discourage you from getting involved. Don't let them discourage you. Act for your child and get involved. Feel free to contact Jean Lewis or me. Other contacts will also be provided soon. Contact your Member of Parliament and ask him or her to support autism coverage in Medicare. Just call them, write them or email them and let them know that is what you want. There is no need to debate them unless you want to do so but they know the need and they know effective treatment is available. Make your MP or anyone seeking to become your MP know that your vote depends on them making a commitment to include autism treatment in medicare coverage. NOW is the time to get involved, and GET POLITICAL.

Group pushes for autism funding
B.C. organization wants Ottawa to set standard for treatment

By MELANIE PATTEN The Canadian Press

A British Columbia-based group pushing to have costly treatments for autistic children covered under medicare has brought its fight to the East Coast.

Representatives from Families for Early Autism Treatment of B.C. met with dozens of parents and their autistic children in Dartmouth as part of a cross-country tour.

The non-profit organization has been calling on Ottawa to work with provincial and territorial governments to set a national standard for autism treatment.

The group also wants intensive therapy, known as applied behaviour analysis, covered for all Canadian children regardless of where they live or their family’s income.

"This is a health-care issue; this is science-based, effective treatment," said Jean Lewis, a founding director of the group.

"It needs to be funded through health care so that it doesn’t matter if you live in British Columbia or Newfoundland, your health care is looked after in the same way as everyone else’s."

The treatment, which can include one-on-one time with a trained professional, can cost up to $60,000 a year.

Without a national standard, coverage for autism treatment differs across the country. In Prince Edward Island, for example, coverage is assessed by income.

"That’s not the way they deal with a cancer patient, that’s not the way they deal with a cardiac problem," said Shawn Murphy, the Liberal MP for Charlottetown. "And that’s not the way they should deal with this particular issue."

Murphy said Ottawa has agreed to meet with the provincial and territorial governments by the end of the year to create a strategy.

Both levels of government will have to pitch in funding for treatment, support and diagnosis, said Murphy, who was recognized by the association for his public support for a national autism framework.

New Brunswick Liberal MP Andy Scott, Nova Scotia New Democrat MP Peter Stoffer, and Liberal Senator Jim Munson, were also recognized.

Jeff Reeves of Charlottetown, whose five-year-old son Owen has autism, attended the event to push Ottawa to provide more funding for autistic children.

Reeves said his son was diagnosed with autism at the age of two. He said Owen finally began treatment after sitting on a waiting list for nearly 18 months.

"Owen is very intelligent, but it’s his social interaction . . . eye contact, how to play with kids correctly," said Reeves, 33, who is married and works in the IT industry.

"He’s made strides that we can’t believe . . . but if he would have gotten (treatment) at three, he could have been much further ahead."

Owen’s treatment costs more than $10,000 a year, and Reeves said the province covers about 60 per cent. The family also pays for supplemental treatment out-of-pocket.

"The federal government has to do something about the funding for (the treatment)," said Reeves.

"The earlier they intervene, the better off these kids will be.

"If they leave them until they’re 18, 20 years old, they’re going to become drains on the system."

Calgary Sun, May 27, 2007

B.C. autism group tours the nation

UPDATED: 2007-05-27 01:14:36 MST

Push for early treatment takes group to East Coast


DARTMOUTH, N.S. -- A B.C.-based group pushing to have costly treatments for autistic children covered under medicare took its fight to the East Coast yesterday.

Representatives from Families for Early Autism Treatment of B.C. met with dozens of parents and their autistic children in Dartmouth, N.S., as part of a cross-country tour.

The non-profit organization has been calling on Ottawa to work with provincial and territorial governments to set a national standard for autism treatment.

The group also wants intensive therapy, known as applied behaviour analysis, covered for all Canadian children regardless of where they live or their family's income.

"This is a health-care issue; this is science-based, effective treatment," said Jean Lewis, a founding director of the group.

"It needs to be funded through health care so that it doesn't matter if you live in British Columbia or Newfoundland, your health care is looked after in the same way as everyone else's."

The treatment, which can include one-on-one time with a trained professional, can cost up to $60,000 a year.

Without a national standard, coverage for autism treatment differs across the country.

In Prince Edward Island, for example, coverage is assessed by income.

"That's not the way they deal with a cancer patient, that's not the way they deal with a cardiac problem," said Shawn Murphy, the Liberal MP for Charlottetown. "And that's not the way they should deal with this issue."

Murphy said Ottawa has agreed to meet with the provincial and territorial governments by the end of the year to create a strategy.

National Autism Political Strategy, Dartmouth, May 26, 2007

Yesterday began early up at 5, off to gas up and then on the road to the Dartmouth Holiday Inn to meet the folks from FEAT-BC as part of their national autism strategy tour. Above, the charming ladies at the registration desk got everybody signed in and welcomed. My sister, Belinda Doherty, and Chris (aka Jim aka Bruce ) Armstrong arrive from the Valley. (Annapolis Valley), Shawn Murphy, Senator Jim Munson and Andy Scott exchange pleasantries, Andy and Jean Lewis from FEAT-BC, Denise Cameron Scott TRIES to grab a relaxing moment after a long journey but is bothered by a pesky blogger, Brian Rimpilaenan travelled from Fredericton for the event, and last but far from least, Peter Stoffer, who with Andy Scott in presenting a national autism strategy motion in the House of Commons cleans up on the door prize a beautiful piece of art by a BC First Nations artist.

It was a great day and the message we all shared was crystal clear. It is time for the autism community in Canada to GET POLITICAL. The courts have, as was noted in some of the speeches, washed their hands of Canada's vulnerable autistic citizens. For autistic children in Canada section 15 has been turned into an empty and hollow promise by the Supreme Court of Canada decisions in Auton and Deskin-Wyneberg. Political solutions are all that is left and political solutions, as past history in BC and Ontario has shown, will not come easy, with politicians, once elected, backtracking on and backing out of their promises. For some unknown reason judges and political leaders both feel free to disregard the compelling realities, needs and challenges of Canada's autistic children and adults.

But politics remains the only solution and there has been progress, real progress, on the national political scene. The Scott-Stoffer motion put autism in the national political consciousness. The valian effort by Shawn Murphy was defeated on the votes but it continued that growth of political consciousness, and continued the momentum towards a true national political solution to Canada's autism crisis.

The FEAT people intend to focus on ridings where the margin of victory in the last election was 2% or less and work on electing candidates with a commitment to autism. That looks like it will achieve some good results but it is not enough. Individual MP's do not establish laws or otherwise govern in our party based parliamentary democracy. Parties, usually under tight Prime Ministerial direction, govern in Canada. That means the autism community must help elect parties that WILL introduce legislation to include ABA, and any other evidence based treatments for autism, in Canada's national medicare coverage scheme. As Murphy, Munson, Stoffer and Scott all noted, that can be done in Canada's cooperative form of federalism regardess of who has primary constitutional jurisdiction over Health care.

But our political history is clear on this subject. Medicare was an idea borne of the NDP (CCF) and was put into effect by the Liberals. More recently the Bloc Quebecois and Stephen Harper's Neo-Con Conservatives all voted unanimously against including autism treatment in medicare. Any realistic national political strategy must acknowledge these realities. And we must be candid with the autism community and with Canadians. As a dad with an autistic son my party is the Autism Party which exists only in my mind and my heart, but guides my political actions. And it tells me that the best interests of autistic Canadians will be served by electing Liberals and NDP members of parliament so that one or either or both in a minority government situation, can actually pass legislation to include autism treatment coverage in Medicare. Let's GET POLITICAL, let's elect a government which will include autism treatment in Medicare so that autistic Canadians wherever they live will receive effective government funded autism treatment.

Thanks to Jim Young of FEAT-NS whose province hosted this event and the folks from FEAT-BC who have done so much for the cause of autism in Canada. Special thanks too, to the politicians with consciences, Andy Scott, Peter Stoffer, Shawn Murphy and Jim Munson, all of whom have made serious efforts to advance the cause of autism nationally.

Friday, May 25, 2007

Autism challenging for all

Autism challenging for all

Parents happy with province's support, but want more.

By Tony Kiritsis

Published Thursday May 24th, 2007

Standing tall atop the jungle gym almost eye level with his father Todd, Ryan Downey paces back and forth with a smile on his face that comes and goes. Perhaps he's unaware of the barking dogs running in the unkempt field behind him, their owner calling out commands. Or perhaps he doesn't care, more concerned about how he will get down.

Just by looking at Ryan as he cautiously approaches the slide, toward Todd's coaxing voice, it's as if there's nothing wrong. But, behind his blue eyes there's something different about him and unlike other four-year olds his age, he can't talk. If he could, he would probably tell you exactly what's wrong.

Instead, he will pace around the room, his hands sometimes flapping, offering the impression he's trying to master a one-handed clap.

At other times he rocks back and forth, his teeth biting down, slowly tearing a hole into the top right-hand shoulder of his shirt. Or he screams and cries because he's scared and frustrated and needs to be heard.

Somewhere, in another part of the city, another lost voice is that of 22-year-old Christopher Hammel.

This docile individual can look intimidating when standing, towering at over six-feet tall. His expressionless stare can be mistaken for a look of displeasure, until he approaches you, raises his powerful hands and pats you on the shoulder.

Seated across from Christopher is his voice; his mother Karen. Like Ryan, Christopher is non-verbal. His frustration and pleasure reveal themselves through grunts, noises and the use of body language.

Ryan Downey and Christopher Hammel are only two of the multitude of children and adults in Canada who suffer from one of the many forms of autism. Autistic children face daily struggles well into adulthood, while their families fight on their behalf to provide the best possible life for their autistic children.

In Canada, roughly 1/165 people aged 0-19 have an Autism Spectrum Disorder (ASD). Adequate funding for services and the need to properly educate these children early in life are only two of the challenges that parents and the systems in place face.

"We thought it was the end of the world," says Todd, when he and Tamara discovered Ryan was autistic.

Parents of autistic children face daily struggles that often leave them worn out. Not only must they contend with the emotional trauma, but also the financial instability.

"When your child is autistic it's a fight you're in for life. Some people do give up and I don't criticize them," says Harold Doherty, a local lawyer and autism activist.

Doherty has been fighting for better services on the part of his family, and others in the community.

Karen Hammel says she understands the strain that's placed on the family. When she had Christopher diagnosed at the IWK Hospital in Halifax in 1986, doctors there told her she should institutionalize her son. Since then, she's placed his needs first.

"We don't eat out, we don't go to movies," says Karen. "House repairs haven't been taken care of. We just go without things that most people don't go without."

Like many parents of children with disorders Todd and Tamara were in denial about Ryan's condition. They blamed themselves for something they thought they could have prevented, when in fact they were doing everything they knew.

"We were pissed at ourselves for not picking up on it," says Todd. "It was as if we failed as parents." Autism is a disorder with one face but wearing multiple masks to conceal its identity.

Considered a spectrum disorder, those diagnosed fall upon a scale and are assessed based on the severity of their symptoms.

Children born with an ASD tend to avoid social interaction with other people. They lack communication skills and engage in excessive repetitive stereotypical behaviours called stimming.

Since the diagnosis the Downey's have found support in Fredericton's autistic community through the Autism Society of New Brunswick and Autism Intervention Services, a local centre where Ryan receives therapy.

It's here, amidst the maze of cubicles that reminds one of an office building, where behind the grey dividers you would expect to find a middle-aged man hunched over a computer busy typing, pictures of his wife and kids pinned to the board above his desk.

Yet there are no desks, nor are there any middle-aged men hard at work behind those dividers. But there are kids back there, kids like Ryan.

Child psychologist Paul McDonnell, who diagnosed Ryan, says that therapy is by no means a cure, because the word cure demotes an absolute result. Instead, McDonnell says people will say this child will become indistinguishable from other children.

When the centre's current location opened in May of 2006, program director Danielle Pelletier says they only anticipated 30 children but now have over 50 children receiving treatment.

Since most children are diagnosed after the age of two, it allows them three to four years of provincially funded therapy. The key to helping children with an ASD is to intervene early.

The centre practices applied behavioural analysis therapy (ABA), a repetitive process by which tasks are broken down into smaller steps. As the child learns each step he can combine them into one complete task.

In New Brunswick, pre-school aged children receive 20 hours of government funded therapy each week through the Department of Family and Community Services. Other Canadian provinces like Alberta will fund autistic children until they reach 18.

"It pretty much seems that 20 hours a week is rock bottom," Dr. McDonnell says. "Research pretty consistently shows that over 25 hours and especially over 30 hours, will give you much better results." Sheila Bulmer, provincial program advisor with the Early Childhood and School Based Services Branch with Family and Community Services says, "We came up with 20 hours, and obviously that's at the lower end, but the other monies and services that children can tap into is what we call integrated daycare." Bulmer says parent involvement at home also contributes to the child's therapy and learning.

Although parents will do all they can to provide extra therapy and learning for their children, the bottom line is they aren't trained therapists.

"It turns out New Brunswick is a good place to be if your child has autism, especially the Fredericton area," says Todd. "We've seen serious improvement and that makes us happy." The therapy Ryan and other children his age receive may be adequate, but more could always be done.

"You do the intensive intervention up front because that's where you're guaranteed to get the most improvement and the most change," Bulmer says.

The money the Downey's receive goes directly to Autism Intervention Services to cover an array of costs including the therapy. Yet all this money is still not enough.

Hundreds of dollars are spent on new toys for new therapies and because Ryan requires around the clock supervision, Todd has become his primary caregiver giving up his career.

"We've already cashed in some retirement money to help him and we'll probably have to cash more," says Tamara.

Early intervention is meant to aid autistic children in order they be integrated into society with the hope that someday, they will be able to live semi-independent lives.

"I'm most worried about the school system," Todd says. "I think he's going to be ready for school, but is the school going to be ready for him?"

Harold Doherty believes the system isn't prepared to handle these students and changes need to be made. "The system says teachers teach and that's it."

Each year approximately 40-50 new students with ASD will enter the English sector school system in New Brunswick. This number is high considering last year, roughly 24 students with an autism spectrum disorder graduated or phased out of the system at age 21.

With nine Anglophone and five Francophone districts, the English and French sectors combined have approximately 900 students with ASD from kindergarten to grade 12 province wide.

Stephanie Allen-Holt, a learning specialist with the Department of Education for students with autism spectrum disorder, says over the last two years her department has been trying to increase the capacity for specialists that can work specifically and directly with autistic children.

Allen-Holt says one of the recommendations from the Liberal platform was to train teacher assistants through the University of New Brunswick's College of Extended Learning with autism support worker training. This called for 100 trained teacher assistants each year over four years.

"What's the cost going to be when you have a child that's not appropriately educated? You're putting money into teaching them pre-school and when they go to school, if that support isn't continued, there's actually the chance some kids could digress," Tamara says.

New Brunswick's Minister of Education, Kelly Lamrock says his department will begin the training as soon as possible.

"If it's at all possible to do in September, we will, trust me. That will be the first spending order I give for the new budget year," says Lamrock.

As parents like the Downeys fight for their son's well-being, the outcome is to provide a better quality of life for the future. For parents like Karen this is now the fight.

"The cost down the road is immense for the government if they want to look at cost and numbers and dollars. To take care of someone who can't independently, or somewhat independently function and become a part of society, that cost is huge. Pay now, or pay a lot later," Tamara says.

Karen has fought to give Christopher similar if not equal opportunities in life, but says while society is accepting and including, they aren't integrating. She has taken it upon herself to integrate her son into society.

Two afternoons every week, Christopher walks through the glass paneled doors at the Greco on Dundonald Street in Fredericton, to the greetings of fellow employees. He comes to build boxes that will end up at doors of residents in the city.

As his strong hands gently assemble the malleable puzzle like cardboard cut-out pieces, the ability to hold down a job shows with enough help, there may be nothing he can't achieve.

"For older individuals the need is proper residential care," says Doherty. "Unless you can care for your child, you have to place them in a group home."

Karen has no inclination of placing her son in a home any time soon if she can help it. Parents like the Downeys hope one day they will not have to make that choice.

"Someday it would be nice if adults with autism had some type of program that would be available to them and their families," says Pelletier. While Family and Community Services' long-term care plan provides Christopher with a care worker and a disability pension, it's still not enough.

"I'm currently fighting to get clinical supervision covered," Karen says. The cost for this service is approximately $10,000 a year.

As it stands, the Department of Family and Community Services and the Department of Health and Wellness won't cover clinical supervision because it's considered an indirect service.

Exhausting all her governmental avenues, if a resolution isn't achieved, Karen feels she has no alternative but to file a human rights complaint, as she believes her son is being discriminated against.

The Downey's have wrestled and settled with a lot in a short period of time, even though they're in the early stages of the fight for Ryan's future.

"We've come to terms that this is how it's going to be," Todd says. "I've come to terms that I'm probably not going to have a career. We've come to terms that we aren't having another child."

The intervention Ryan began months ago has yielded an improvement . He has begun to interact with other children at the centre and is able to be in public spaces like the mall with minimal incidents.

Karen knows she will always be fighting for Christopher. One day she won't be able to take care of him anymore and wonders what will happen to him in the future.

"No matter what it is you're looking for, you always just have to keep repeating and repeating it to the government. After a feel so beaten down," Karen says.

The future for children like Ryan appears optimistic. Programs and services to aid autistic children in their youth have improved, but have a long way to go.

The future for adults like Christopher would be bleak, if it weren't for the determination of parents like Karen, who are currently laying the groundwork for the next generation.

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


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.

Thursday, May 24, 2007

Hope For Autism

Hope for autism

Thursday, 24 May, 2007

Health Children with autism showed an improvement in language and daily living skills and also in their levels of Intelligence Quotient (IQ) following the implementation of Early Intensive Behavioural Intervention (EIBI).

The home-based programme was tried for 25 hours per week over a two-year period, with the cooperation of trained staff and the parents of autistic children. The courses were individualised to meet the needs of each child and this proved to be beneficial. IQ levels improved significantly, with two-thirds of the children showing an increase. Indeed, one child saw their IQ leap from 30 to 70, while another showed an improvement from 72 to 115. This is particularly impressive considering the general population have an average IQ of between 85 and 115.

Despite the intensive nature of the programme, parents were more than willing to participate to help their children. The study was led by Professor Bob Remington of the School of Psychology, who did admit that the programme was hard work and a big commitment but added that he felt it was "harder to be helpless."

Today, an estimated 535,000 people live in the UK with an autistic condition. This early intervention appears to help autistic children develop important skills that could allow them to be included in mainstream schools. With this in mind, the Southampton Childhood Autism programme (SCAmP) research team will continue to monitor the children to establish long-term effects to improve the programme for others.

Wednesday, May 23, 2007

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.

FEAT-BC Goes Coastal, Salutes Autism Champions at Halifax Sat May 26, 2 to 5

FEAT-BC has been a leader in the autism struggle in Canada and now they are coming east to Halifax this Saturday May 26 from 2 to 5 at the Holiday Inn to salute four federal autism champions Andy Scott, Peter Stoffer, Shawn Murphy and Jim Munson, and to meet with Maritimers to discuss development of a national autism federal election strategy. Interested in autism? Then come on out!

“FEAT BC goes coastal” tour to Halifax

Vancouver, B.C. – Jean Lewis, founding director of FEAT-BC (Families for Early Autism Treatment of BC) today announced that she and other representatives of FEAT-BC will be travelling to Halifax on Saturday, May 26th for a gathering of parents of autistic children and their supporters from across the Maritimes.

“One purpose of this event is to recognize the leadership of MPs Shawn Murphy, Andy Scott, and Peter Stoffer, as well as that of Senator Jim Munson, in the fight to get Medicare coverage for autism now,” said Lewis. “These men have distinguished themselves among Canadian parliamentarians with their dedication to curtailing this emerging health care crisis. Parents of autistic children and supporters look forward to thanking them personally.”

The principal purpose of the gathering is to organize a team of FEAT activists for deployment during the upcoming federal election in select constituencies across the Maritimes.

On the way to Halifax, stops are planned in Ottawa and Toronto for meetings with Ontario-based parent activists.

At 11:00 a.m. on Thursday, May 24th, a news conference will be held in the Charles Lynch Press Room on Parliament Hill.

FEAT-BC (Families for Early Autism Treatment of BC) is a not-for-profit volunteer organization of parents and professionals working towards universal access to effective, science-based treatment for all Canadians diagnosed with autism in Canada.


For further information, contact: Jean Lewis at, or telephone 604-925-4401 or 604-290-5737.

Tuesday, May 22, 2007

No Autism Just Fredericton In May

It was a beautiful May day in Fredericton. A perfect day to do a bridge walk, from Westorland Street Bridge, along the Saint John River, across the pedestrian bridge, (former train bridge) through the down town, across the Westmorland Street Bridge and home to Nashwaaksis on the North side of Fredericton. But who let that Blogger into the picture?

Monday, May 21, 2007

Autism & ABA, For Conor It All Adds Up

I have commented previously about how ABA, Applied Behavior Analysis, has been such a positive and effective means of communicating with Conor, teaching him to communicate, teaching him to read, and controlling and reducing problem behavior, notwithstanding the challenges that remain. By problem behavior I mean self aggression and self injurious behavior as well as property damage and aggression to others. Another area of skill development for Conor has been math. Conor loves his numbers and he is learning and loves to demonstrate his math skills as shown in these pictures. The pictures on this comment show skills, including patience and task accomplishment, in addition to adding things up correctly, that would have been unimaginable prior to ABA. If parents with newly diagnosed children do not wish to believe the hundreds of studies documenting the effectiveness of ABA as an intervention for autistic children then take a look at these pictures. This is not a "robotic" child being forced to perform by an abusive methodology. This is my son relaxing on the holiday and enjoying a past time. If you think he has been been deprived of his personality because of exposure to ABA look at the pictures of my laughing joyous son on this blog site. He has an infectious personality and he has been loved by many therapists who have worked with him and other people who meet him in our daily lives.

Do not listen to the ideologues who oppose ABA and minimize the wealth of professional literature supporting its effectiveness. And do not listen to them when they say ABA deprives children of their personalities. There is no professional literature to support these allegations and the experiences of too many autistic children and their families say otherwise. Michelle Dawson, Laurent Mottron, Jim Sinclair and other anti-ABA ideologues do not speak for my son. He speaks for himself. And when it comes to ABA Conor can add it all up for himself as he does in these pictures. In his actions, in his exercise of skills he has learned, in his joyful demeanor, Conor speaks for himself and he puts the boot to these tired anti-ABA careerists.

Autism Research Ethics - Is It Ethical to Deny ABA to Autistic Infants for Research Purposes?

The AP is reporting several new autism research projects aimed at studying early clues of autism and other disorders. One such study mentioned is by Dr. Stanley Greenspan which, according to the AP report, will involve two groups of infants - One group will receive intensive behavior training, the other will not; both will be compared through age 5. But is it ethical to deny ABA intervention to infants who are diagnosed or suspected to have an Autism Spectrum Disorder for research purposes?

An opinion peace in the Medical Journal of Australia Children with autism deserve evidence-based intervention The evidence for behavioural therapy MJA Vol 178 5 May 2003 424, Jennifer J Couper Head, Endocrinology and Diabetes Centre, Women's and Children's Hospital, North Adelaide, and University of Adelaide, SA and Amanda J Sampson Ultrasonologist Royal Women’s Hospital, Carlton, VIC reviewed the impressive body of research that existed in 2003 in support of the effectiveness of ABA as an autism treatment. The authors noted "that while ineffective therapies may be harmless, they waste parents’ money and the child’s valuable therapy time. Furthermore, the delay in implementing effective treatment may compromise the child’s outcome.".

Since the MJA editorial piece there have been more studies confirming the efficacy of ABA as an autism intervention or treatment. How can a study which denies ABA treatment to autistic infants during the critical 2-5 year age period meet ethical standards in light of ABA's demonstrated evidence based effectiveness in treating autism? As Couper and Sampson noted ineffective therapies waste parents' money and valuable therapy time. Hopefully, at the very least the parents of infants in the control group, the infants not receiving ABA, have been informed that there are literally hundreds of studies demonstrating the effectiveness of ABA as an autism intervention. Hopefully they will have been told before agreeing to deny ABA treatment to their children that state, academic and professional bodies around the world have consistently concluded that ABA stands alone as the most solidly supported, evidence based treatment for autism to this day.


Associated Press
Article Launched: 05/21/2007 01:31:53 AM PDT


Research on identifying early clues of autism and other disorders and testing treatments is booming. Here are some of the doctors and researchers involved:

Dr. Fred Volkmar at Yale University is studying potential ways to diagnose autism in the first months of life, including whether looking at objects rather than people is a sign. "I think we're on the verge of being able to do a much better job" of diagnosing autism in infancy, Volkmar said.

Researcher Stephen Porges at the University of Illinois at Chicago is starting a five-year study of whether excessive crying past 6 months of age might be an early sign of autism, attention deficit or other behavioral problems.

Dr. Stanley Greenspan, a psychiatry professor at George Washington University, is launching a multimillion-dollar study involving parents and babies at risk for autism or attention deficit disorder. One group will receive intensive behavior training, the other will not; both will be compared through age 5.

Sunday, May 20, 2007

Autism Symposium Cancelled - Harper's Book of Dirty Tricks Page 2

The Harper Conservative government strategy to address the Autism health crisis in Canada is beyond pathetic; it is wretched. It is nothing more than a ploy from the now infamous Conservative Party Book of Dirty Tricks.

The Harper Conservatives' autism strategy was announced in November 2006 by Health Minister Tony Clement and consisted of a web page and a stakeholder symposium to be held in 2007. Yes there were other elements - sort of. A research chair was mentioned - sort of. The Harper conservatives pledged to begin exploring the establishment of a research chair focusing on effective treatment and intervention for ASD. They also pledged to launch a consultation process on the feasibility of developing an ASD surveillance program through the Public Health Agency of Canada (PHAC) to help shape appropriate ASD programming and research. I wonder which generation of Canadians will be around to see whether an ASD surveillance program, whatever that is, is determined to be feasible?

Of course there is the pledge to address Canada's autism health crisis by designating a bureaucracy within a bureacracy, the pledge to designate the Health Policy Branch of Health Canada as the ASD lead for actions related to ASD at the Federal Health Portfolio level. Health Canada itself of course is the federal government Department charged with responsibility over health matters which the Harper Conservatives tell us [ignoring the development over decades of cooperative federalism] is a matter entirely within provincial constitutional jurisdiction. Gee, the policy branch of the federal department responsible for a matter which the Conservatives claim is entirely within provincial jurisdiction will be designated as the lead branch of that department for actions related to ASD at the federal level. WOW!!

Then there is the autism web site promised by Health Minister Clement. Personally I believe it to be the least informative autism site on the internet. But that may be a bit harsh. There may be autism web sites that are still "under construction" and actually say nothing at all. Judge for yourself:

Then there is the "stakeholders" symposium promised to be held in 2007. As one who has been an autism activist for the last 8 years in New Brunswick I recoil at the use of the word "stakeholder". It sounds like a property interest in a commercial transaction. I am an autism activist because of my profoundly autistic son. He, with his brother, are the joys of our life but they are not "stakes" in a poker game. And government typically defines the stakeholder concept broadly to include any group that might be useful in pushing the government's own agenda. Careful selection of a few stakeholder groups for government funding and support invariably results in useful tools for creating division and weakness in the disability community whose issues are being addressed, allowing government to divide, delay and deny provision of necessary services.

I was asked by the Autism Society New Brunswick to participate as the ASNB representative at the autism stakeholders symposium which was scheduled to take place mid-June 2007 in Ottawa. I contacted the Canadian Institute for Health Research to register for the event and was told that the federal government wanted the Autism Society Canada, the federal organization of which ANSB is a member, to forward the names of participants for the autism symposium. Thus the provincial body, the ASNB, could not forward names directly of representatives for a national symposium to address an issue which, according to Stephen Harper, Tony Clement and Edmonton area MP Mike "Bigfoot" Lake [Conservative Party autism spokesman and Autism Dad]is entirely within provincial jurisdiction. The Autism Society Canada put my name forward at the request of ASNB and I waited to receive my invitation. I had been told the invitations would be sent out two weeks ago. When I followed up last week I was informed by CIHR that the symposium was being discussed at a more senior level and that so many names were put forward that it was necessary to arrange a new larger location. In the meantime I had become aware that prominent, no nonsense autism activists like Andrew Kavchak in Ottawa and the FEAT-BC folks had also been put forward as participants in the national autism stakeholders symposium. Last week it was formally announced that the symposium was "postponed" to an unspecified date in the fall.

I do not believe the excuse that the Government of Canada could not find a large enough room to accommodate a national symposium of autism representatives by mid-June. The federal government is THE consumer of services for such activities in the National Capital Region and has a lot of purchasing/bargaining power. There is a substantial industry in the region which thrives on hosting such events and the capacity has been developed for these purposes. The federal government itself owns a good chunk of the national capital real estate and surely has the facility to itself host a symposium.

The Harper Conservative government became increasingly aware that activists such as yours truly, Andrew Kavchak, some FEAT-BC reps, and some of the family members involved in the Auton and Deskin-Wynberg autism cases were coming to Ottawa to participate in the national autism symposium and they wanted no part of it. That is the more plausible explanation for the postponement/cancellation of the symposium. The whole national autism "strategy" could have been lifted from page 1 of the Harper Book of Dirty Tricks recently exposed and which directs Conservative MP's to to obstruct the progress of parliamentary committees, including stacking such commitee proceedings with witnesses who would support the Harper Conservatives' agenda. The page was turned to page 2 when the only pledge of any merit, the national autism stakeholders symposium was "postponed" until the fall of 2007. IF the symposium does proceed in the fall you can be sure that every effort will be made by the party of Harper and Clement to ensure that the voices of serious autism activists will not be present and will not be heard. As dictated in Harper's Book of Dirty Tricks only sponsored, docile autism representatives supportive of the Conservative Party agenda will be invited. ... Continued on Page 3, Harper's Book of Dirty Tricks.