Instructing anyone who needs calming, autistic or otherwise, to count 1, 2, 3 and take a deep breath is an old well known technique. I mention it because it has been a particularly effective technique with Conor who is severely autistic and can get pretty wound up at times.
Conor loves his numbers, likes to do addition and "count by's" eg. count by 10,000"s, count by 3's, count by 7's etc. I have found that stretching out the 1,2, 3, breathe with 2,4,6, breathe, 3,6,9 breathe up to 10,20,30 breathe keeps Conor's interest in the activity and makes the 1,2,3 breathe calming technique even more effective. An old trick but one that is often very helpful.
Saturday, April 14, 2007
Autism Urgency - Assemblymember Tim Gordon's "Better Focus on Autism Now Act of 2007"
Assemblymember Tim Gordon
108th Assembly District
New York State Assembly
Some politicians truly understand autism and the magnitude of the problems it poses to autistic persons, their families and society and some don't. Some take action while others wring their hands ineffectively. Assemblymember Tim Gordon of the New York State Assembly's 108th district is one who understands and is taking action. He is sponsoring legislation entitled the "Better Focus on Autism Now Act of 2007" The title of the proposed legislation itself conveys a needed sense of urgency. The proposed legislation, as described by Assemblymember Gordon in an article he authored for "The Record" attached hereafter is comprehensive in scope but two points in particular drew my attention because they are so seldom mentioned in autism discussions or proposed legislation - expand residential services for persons with autism and improve training and development opportunities for agency and voluntary sector employees who serve persons with autism. These latter two areas are also in critical need of being addressed here in New Brunswick
Gordon: We better focus on autism
By:
04/13/2007
The number of children diagnosed with autism is rapidly increasing. According to a study from the Centers for Disease Control and Prevention, nearly one in every 150 U.S. children has an autism spectrum disorder. These numbers are startling - and this disability is affecting more and more families. Twenty years ago autism was a very rare case. Today autism is becoming a frightening statistic in every community.
April is Autism Awareness Month and I encourage everyone to take this opportunity to learn more about this disability.
Recently, the untimely, tragic death of Jonathan Carey, an autistic child from Bethlehem, has made clear the need for strong measures to protect special needs children and do whatever it takes to prevent negligence. If there is a benefit from this tragedy, it is that Jonathan's parents, Michael and Lisa Carey are remarkable advocates, who are relentlessly fighting for a positive change to come from their family's loss.
In light of this, I am sponsoring legislation (A.6096), which would create the "Better Focus on Autism Now Act of 2007." This all-encompassing bill would:
- Support research on treatment for persons with autism;
- Improve public awareness of the nature of autism;
- Expand the early identification of whether children may be diagnosed with autism;
Better Focus on Autism Now Act of 2007. and
- Expand residential and other services for persons with autism within the state;
- Improve training and development opportunities for agency and voluntary sector employees who serve persons with autism; ;
- Create a cohesive and coordinated approach to serving the autistic population within the numerous state agencies.
The Assembly also recently held a public hearing to raise awareness. The hearing was meant to explore the educational, medicinal and support services available that can help those with autism lead healthier, more productive lives. I also joined my colleagues from the Legislature, Senator Joe Bruno and Senator Neil Breslin along with the Carey family at a recent press conference calling for an investigation into the Carey incident and increased penalties following the abuse and death of Jonathan Carey (A.7227).
I also support legislation to enact "PJ's Law" which directs the commissioner of education to require school bus drivers and school bus attendants on a bus transporting a child or children with a disability to complete training, twice a year, on the special needs of children with disability (A.1817).
With Autism Awareness Month upon us, I can't imagine a better time to encourage everyone to find out more about autism and how you can help a child with the disability. Earlier this month, the Center for Autism and Related Disabilities at the University at Albany opened in a new, larger location. With 4,000 square feet at 1535 Western Ave. in Albany, the new center is three times larger than the previous location in the university's social science building. The center offers three training to local parents and educators in a 12-county area. It is funded with state and federal grants and no fees are charged to parents and educators. The center offer up-to-the-minute education for those caring for children with autism.
Ultimately, it is my hope that with the increased awareness, and fundamental reforms within the Office of Mental Retardation and Development Disabilities that other parents will never suffer the pain the Carey family had to endure when they lost their son and brother.
If you have any questions or would like more information about autism services in our area, call my office at 455-5777.
Tim Gordon is the assemblyman for the 108th Legislative District.
http://tinyurl.com/3b9npd
Friday, April 13, 2007
Autism Vox Falsus
There is in the world autism community, at least on the internet component of that community, a group which portrays itself as the true voice of autism. It is essentially an internet based community comprised of some high functioning autistic persons, some parents of autistic children, and some "professionals" including some psychiatrists and educators who oppose attempts to treat or cure autism. Self described as the Neurodiversity movement this group poses as human rights advocates for the autistic but often resembles a hate group in its personal attacks and demonization of any parent or group which attempts to find and fund treatments and cures for autism. Any mention of the serious challenges of the more severe forms of autism is attacked by the high fucntioning autism internet essayists. Even mentioning that some autistic suffer from cognitive deficits, even the use of the expression "low functioning autism" is met by hostility from the Neurodiversity advocates. Far from being the true voice of autism, Neurodiversity is a false voice; an autism vox falsus.
Parents across Canada and the United States and elsewhere in the world have fought hard to seek and obtain a better life for their autistic children through treatment and education. For their efforts they are mocked, ridiculed and demonized by the Neurodiversity movement . The core of the Neurodiversity movement is a number of high functioning autistic persons who do not wish to be cured of their autism. They view their autism as an essential component of who they are as individuals. That is a view point that I can and do respect. They have the right to wish to remain autistic. Where Neurodiversity becomes troublesome is when they fight to prevent parents from seeking cures and treatments for their own children and the demeaning tactics they use in doing so.
One of the Neurodiversity internet commentators who is generally more polite than most is Ms. Kristina Chew the mother of a 10 year old autistic boy, who holds a Ph.D and is a classics teacher. Although Ms Chew has in fact employed ABA interventions to assist her son she downplays that fact on her blog site “Autism Vox” where her guest commentators usually present a Neurodiversity anti-autism cure perspective. But, she is admittedly almost always exceptionally polite and diplomatic. That diplomatic bent changed dramatically this past week though with two comments from Ms. Chew about the Don Imus racism controversy. In these comments Ms. Chew made clear her animosity towards Autism Speaks and towards the parents in the Autism Every Day video.
"I really don’t have anything to say about Don Imus — I am no fan, to be sure — but living here in New Jersey, and my husband being a Rutgers alum — I have been appalled, or just outraged, at his use of “crude, offensive language” about the Rutgers women’s baskbetball (sic) team last Wednesday while discussing their defeat in the NCAA Women’s Basketball Championship.
I do not know understand how any national autism organization can be associated with someone who can use such hateful words."
http://www.autismvox.com/one-thing-don-imus-shouldnt-have-said/
“It should be noted that, just under a year ago, Imus’ MSNBC show broadcast A New Decade for Autism, a fundraising event at which the video Autism Every Day was first screened—a video which depicts life with autism as difficult (as it can be, but there are ways to change this, for sure) and hopeless; a video that was felt by more than a few autistic persons and parents of autistic children as portraying autism as horrrible and hateful only: No surprise, perhaps, that it had the endorsement of Imus.”
http://www.autismvox.com/in-the-wake-of-imus-ouster/
The heinous crimes committed by Autism Speaks? Raising money for research and treatment of autistic children. The Autism Every Day video consisted of parents telling of the challenges presented by their childrens’ autism. For that these parents, along with MSNBC and Autism Speaks , have been vilified by the Neurodiversity movement. Until this week Ms Chew and Autism Vox had been polite and diplomatic in expressing her Neurodiversity anti-autism cure sentiments. The language above though removes the pretence of civility from Autism Vox.
The use by Ms Chew of Mr Imus’ offensive personal comments to smear an organization and group of parents fighting to improve the lives of their autistic children is itself offensive.
Autism Vox? Autism Vox Falsus is more like it.
Parents across Canada and the United States and elsewhere in the world have fought hard to seek and obtain a better life for their autistic children through treatment and education. For their efforts they are mocked, ridiculed and demonized by the Neurodiversity movement . The core of the Neurodiversity movement is a number of high functioning autistic persons who do not wish to be cured of their autism. They view their autism as an essential component of who they are as individuals. That is a view point that I can and do respect. They have the right to wish to remain autistic. Where Neurodiversity becomes troublesome is when they fight to prevent parents from seeking cures and treatments for their own children and the demeaning tactics they use in doing so.
One of the Neurodiversity internet commentators who is generally more polite than most is Ms. Kristina Chew the mother of a 10 year old autistic boy, who holds a Ph.D and is a classics teacher. Although Ms Chew has in fact employed ABA interventions to assist her son she downplays that fact on her blog site “Autism Vox” where her guest commentators usually present a Neurodiversity anti-autism cure perspective. But, she is admittedly almost always exceptionally polite and diplomatic. That diplomatic bent changed dramatically this past week though with two comments from Ms. Chew about the Don Imus racism controversy. In these comments Ms. Chew made clear her animosity towards Autism Speaks and towards the parents in the Autism Every Day video.
"I really don’t have anything to say about Don Imus — I am no fan, to be sure — but living here in New Jersey, and my husband being a Rutgers alum — I have been appalled, or just outraged, at his use of “crude, offensive language” about the Rutgers women’s baskbetball (sic) team last Wednesday while discussing their defeat in the NCAA Women’s Basketball Championship.
I do not know understand how any national autism organization can be associated with someone who can use such hateful words."
http://www.autismvox.com/one-thing-don-imus-shouldnt-have-said/
“It should be noted that, just under a year ago, Imus’ MSNBC show broadcast A New Decade for Autism, a fundraising event at which the video Autism Every Day was first screened—a video which depicts life with autism as difficult (as it can be, but there are ways to change this, for sure) and hopeless; a video that was felt by more than a few autistic persons and parents of autistic children as portraying autism as horrrible and hateful only: No surprise, perhaps, that it had the endorsement of Imus.”
http://www.autismvox.com/in-the-wake-of-imus-ouster/
The heinous crimes committed by Autism Speaks? Raising money for research and treatment of autistic children. The Autism Every Day video consisted of parents telling of the challenges presented by their childrens’ autism. For that these parents, along with MSNBC and Autism Speaks , have been vilified by the Neurodiversity movement. Until this week Ms Chew and Autism Vox had been polite and diplomatic in expressing her Neurodiversity anti-autism cure sentiments. The language above though removes the pretence of civility from Autism Vox.
The use by Ms Chew of Mr Imus’ offensive personal comments to smear an organization and group of parents fighting to improve the lives of their autistic children is itself offensive.
Autism Vox? Autism Vox Falsus is more like it.
To Deskin Wynberg Autism Case Families - Thank You
[Above top Supreme Court of Canada building, bottom - Canadian Parliament building]
Yesterday the Supreme Court of Canada, in a decision which probably did not surprise too many people, dismissed without reasons the application for leave to appeal the decision of the Ontario Court of Appeal in the Deskin-Wynberg case. The Court of Appeal had overturned a trial court decision which ruled that the Ontario Government was in contravention of the Charter of Rights by its refusal to fund Intensive Behavioral Intervention treatment for the families' autistic children. The Supreme court of Canada has shown increasing deference to government decision making during the tenure of the Rt. Hon. Chief Justice Beverley McLachlin, P.C., as Chief Justice of the Court. The Newfoundland pay equity case was the real indicator of the ascendancy of deference to government as the principal concern in the court's equality rights decisions. In that case Newfoundland (Treasury Board) v. N.A.P.E., 2004 SCC 66, [2004] 3 S.C.R. 381the Supreme Court found that postponement of introduction of pay equity schedules constituted serious discrimination but was justified by the challenges facing government decision makers to maintain government credit ratings and assign scarce financial resources.
The Auton case, Auton (Guardian ad litem of) v. British Columbia (Attorney General), 2004 SCC 78, [2004] 3 S.C.R. 657in which the Supreme Court of Canada reversed the unanimous decision of the British Columbia Court of Appeal, and a trial court decision ruling that exclusion of autism treatment from provincial medical care funding constituted discrimination contrary to the Charter left little room for doubt that deference to government now trumps the rights interests involved in Charter of Rights cases. In that case the Court concluded that the Canada Health Act itself provided limited guarantees of health coverage to Canadians and failure to provide coverage for treatment of some conditions could not therefor constitute discrimination.
In Canada it is clear that the courts are becoming an increasingly ineffective remedy for protection and advancement of the rights of children with autism. Any disability group which seeks to enforce what they consider to be their equality rights will have to think long and hard before commencing litigation to protect those rights under the Canadian Charter of Rights and Freedoms.
The litigation in the Deskin-Wynberg case helped keep autism issues on the forefront of political consciousness across Canada. The families' tremendous sacrifices, and that of their legal counsel, were undoubtedly very substantial. What is crystal clear, after the decisions in Auton and Deskin-Wynberg is that families seeking public policy assistance for their autistic children will have to take their concerns to the political arena.
The realities of politics often come down to numbers. Although autism is increasingly recognized as widespread with 1 in 150 persons now estimated to have some type of autism spectrum disorder those numbers will have to be translated into some degree of political influence. 1 in 150 does not sound like an overly strong hand to play but it is actually somewhat larger than that. Most people on the autism spectrum will have parents, siblings, relatives, family friends, personal friends who might vote based on the interests of the autistic loved one in their life. That expands the potential "autism vote" substantially and might be used to some effect in close political and federal ridings to try and pressure politicians to do what their consciences - and the courts - have not required them to do - treat, educate and provide decent residential care for autistic persons in need.
The future will tell whether autism numbers can be translated into political influence and gains for autistic persons and their families. For the present I would like to again personally thank the families, and the legal counsel, in the Deskin-Wynberg and Auton cases for the tremendous contributions they have made to the cause of autism in Canada.
Thursday, April 12, 2007
Ultimate Autism Reality Check - Autistic Children Become Adults
Centracare
414 Bay Street,
Saint John, NB
Much of the autism discussion found on the internet does not seem directed at the very real concerns of families raising autistic children. Little of it provides practical assistance for the very real challenges facing families with an autistic child to raise and care for. The same is also true for the mainstream media. Despite all the attention generated by Autism Awareness Month in the US and the good efforts by the people at Autism Speaks, Oprah Winfrey and the View, there is very little coverage of, discussion of, or even acknowledgment of the realities of life that await autistic children, particularly those with severe intellectual, communication and behavioral deficits when they grow older, when they become youths and adults.
In New Brunswick Canada our residential care and treatment capacity is extremely limited. Information is not readily available to autism organizations about what facilities and services do exist. Requests for feedback sent to residential care home operators by the New Brunswick Autism Society went unanswered by the owners of those facilities. Government officials generally engage in the time honored tactics of delay and divide the autism community and lumber on with the same inadequate resources currently available.
In New Brunswick youths and adults who reside in residential care facilities will be cared for by staff with little or no training in autism or behavior management techniques. When frustrations and conflict arise from strained relations between untrained staff and persons with autism spectrum disorders there is no one to take the side, or offer the perspective of, the autistic youth or adult. Assault charges then follow against the autistic youth or adult who is supposedly being cared for in the residence.
In New Brunswick a year and a half ago an autistic youth was sent to reside on the grounds of the Miramichi Correctional facility. He had been convicted of no crime or offence. He was sent there because the Province of New Brunswick lacked the residential care or facilities in which he could live and receive treatment. Ultimately he was sent out of the province, out of the country, to a facility in the State of Maine.
New Brunswick has a central mental health facility in which persons with a variety of mental illnesses reside. The facility does have a psychologist on staff but the facts of life for an autistic person living in that facility are not pretty. I have visited that facility in the past with a father who told of arriving on short notice and finding his adult autistic son, barely clothed, in an isolation room with a hard wet floor. When we arrived we found exactly the same situation. There is little in the way of recreational programs or activities organized for severely autistic adults.
It might be different in other provinces and states in North America. Living in New Brunswick Canada this is the future that awaits severely autistic children as they age. As the father of an autistic son, now 11 years old, I can not ignore that future. It is the ultimate autism reality check.
Wednesday, April 11, 2007
IAN, Interactive Autism Network
www.IANproject.org https://www.ianresearch.org/
I have registered on the IAN, Internet Autism Network and encourage other parents and professionals to do the same. The Internet has proven itself a powerful tool for many purposes. Here in New Brunswick, Canada, those of us who are autism advocates have used it for autism education and advocacy. With use of the internet government has become more responsive to the perspective and interests of parents of autistic children and adults. IAN promises to bring parents of autistic children into the world of research and information about autism.
About IAN
IAN, the Interactive Autism Network, was established in January 2006 at Kennedy Krieger Institute and is funded by a grant from Autism Speaks. IAN’s goal is to facilitate research that will lead to advancements in the prevention, treatment, and cure of autism spectrum disorders. To accomplish this goal, we created the IAN Community and IAN Research.
IAN Community
The IAN Community is an online environment designed to act as an inviting library and meeting place where everyone concerned with autism spectrum disorders can learn more about autism research. Everyone can participate and benefit from the IAN Community.
Our goal is the help you:
* Understand the research process
* Keep up with the latest research findings, news, and events
* Understand the value of participating in autism research
* Influence the direction of research
We hope that the IAN Community will bring families, friends, individuals with ASDs, together with researchers, therapists, educators, and other professionals in the autism field to better understand this complex disorder through research and collaboration, and to develop effective strategies that will improve the lives of people on the spectrum.
IAN Research
IAN Research is scientific study where parents of children with an autism spectrum disorder and qualified researchers throughout the United States work together to understand autism spectrum disorders. IAN Research connects researchers to parents—the people who know the most about their child—to uncover the secrets of this complex disorder.
Without leaving home, parents provide information in a secure online setting about their child’s diagnosis, behavior, family, environment, and services received. Participating parents report on their child’s progress over time. Researchers from different institutions throughout the country will work with this information to learn about the effect and interaction of factors such as genetics, environment, and treatment on the well being of children with autism spectrum disorders.
IAN Research will match willing parents with appropriate local and national research projects. This partnership will solve one of the major difficulties that autism research projects face—recruiting enough participants. Each year, many useful and innovative studies in the United States are not completed or are significantly delayed because researchers cannot find enough children who qualify; valuable opportunities to learn about autism are lost.
Parents may benefit directly from this match because they will be able to participate in research that they would not have known about without IAN. Participation may also provide parents with opportunities to learn more about their child’s disorder and receive additional services.
http://www.iancommunity.org/cs/about_ian/
Monday, April 09, 2007
Autism Is NOW a Health Crisis; Soon a Disaster
The attached article by Anne McElroy Dachel should be mandatory reading for public officials charged with responsibility for public health issues in Canada, the United States and elsewhere in the world. Ms Dachel takes the CDC, in particular, to task for its failure to portray the seriousness of autism disorder for so many individual autistic persons and the impending costs to taxpayers in the US of paying for the care and supervision they will require in a few short years. While her support for the mercury-vaccine-autism theory will not be endorsed by all readers, including me, the magnitude of the existing health crisis is beyond serious dispute.
Canada is cursed by the same nonchalant ignorance on the part of our leaders. Prime Minister Stephen Harper, after ordering his troops to vote down a motion to amend the Canada Health Act to provide funding for autism treatment across Canada, then put a budget before Canadians which did not dedicate a single penny to provide funding for autism treatment. Prime Minister Harper was not just heartless toward autistic children and adults with the middle finger salute he gave them; he also demonstrated his own ignorance of a serious health crisis which will soon hit Canadians very very hard financially in providing supervision and care for autistic adults, now numbering 1 in 150.
Autism: "A Serious Public Health Problem"
Tuesday, 10 April 2007, 11:41 am
Opinion: Guest Opinion
Autism: “A Serious Public Health Problem”
By Anne McElroy Dachel
The article about autism, No Know Cause, No Cure by Jennifer Chancellor in the Tulsa World on April 1 got my attention. It wasn’t because we were again told that no one knows for sure why one in every 150 U.S. kids is now autistic, or that experts have no idea how to cure them. That’s pretty much the way autism is covered in the press. What stood out to me was the first part of the statement, “The CDC has called autism a national public health crisis.”
As someone who has read news reports on autism for several years, I’ve yet to see the Centers for Disease Control and Prevention use the term “crisis” when talking about autism.
Maybe I missed it somewhere, but after several days searching through CDC press releases on autism, it just wasn’t there.
The Oprah Show covered autism on April 5. Oprah started the program by saying that the CDC calls autism a “national health threat.” That was the first time I’d seen a term as strong as “health threat” used by the CDC in referring to autism. Oprah said that 67 children a day in the U.S. are diagnosed with autism, making it one every 20 minutes. That seems like a lot more than just a “health threat.”
The CDC is extremely careful when mentioning autism. For instance, in February when announcing the results of a 5 year old study revealing an autism prevalence rate of one in 150 among eight-year olds, the “C” word was never mentioned. "Autism is a serious public health problem which impacts too many children and their families," said CDC Director Julie Gerberding, MD, MPH. Is “Serious public health problem” as alarmed as the Director is about autism in 2007?
So why is it that autism doesn’t deserve a crisis rating by the CDC? Lots of other diseases and disorders do. They’ve come out in official statements calling HIV/AIDS a “crisis.” The explosion in the rate of diabetes in the U.S. is a “crisis” to the CDC too. The CDC has an official “Bird Flu Crisis Plan” ready for when the avian flu actually affects someone in the U.S. We officially have a “childhood obesity crisis” and an “asthma crisis” according to the CDC.
While I’m not arguing that diseases and disorders like AIDS and diabetes don’t deserve to be called crises, I’m just continually amazed that the CDC doesn’t consider autism in a league with other serious health concerns.
Another term the health care officials are careful not to use in the same breath as autism is the word “epidemic.” Autism may affect more children than pediatric AIDS, juvenile diabetes and childhood cancer COMBINED, but autism is never an epidemic to the CDC. Surprisingly, the CDC refers to each of these other diseases on their own as epidemics.
As the autism numbers exploded from one in 10,000 in the 1970s, to one in 2,500 in the 1980s, to the present one in every 150 children in the U.S., the CDC kept telling us that it just wasn’t happening. When asked why more and more autistic kids are filling our schools, the federal health experts told us that doctors were getting better at recognizing autism. This “better diagnosing” explanation has just been reinforced with the claim that the new rate of one in 150 is because the CDC is getting better at counting.
The official autism website of the CDC makes no reference to either “epidemic” or “crisis.” The tone of the information has all the urgency of the CDC fact sheet on treating head lice. There’s no indication that autism costs the U.S. $90 billion a year and that it's projected to increase to $200-400 billion annually in ten more years, according to the Autism Society of America. Nor is there anything about the recent conservative estimate that each autistic person in the U.S. will cost the American taxpayers $3.2 million
Under “What is Autism Spectrum Disorder?” on the CDC website, we are told that “people with ASD often have problems with language, communication and social skills. ASD may display a certain set of behaviors, such as resisting change, repeating phrases or actions, not interacting with others in traditional conversation or play, or showing distress for unapparent reasons.”
That weak description doesn’t tell us how seriously affected many children with autism are. It doesn’t include the children with violent behavior who are a danger to themselves and to others, or the child who can’t talk at all and has no fear of dangerous situations and is in need of constant supervision.
And the CDC website fails to note the other health problems like chronic diarrhea, seizures, allergies, and asthma which often accompany autism.
The CDC may have their own reasons for avoiding attention-getting terms like “crisis” and “epidemic.” This is also the agency that runs the vaccine program. As the charge continues to be made that vaccines are directly related to the explosion in the autism rate, the CDC continues to deny it.
On the CDC website, they say, “No one knows exactly what causes Autism Spectrum Disorders.” They cautiously say that “experts believe genetic and environmental factors probably interact in complex ways to contribute to the onset of the disorder,” but they’re quick to tell us, “…neither thimerosal-containing vaccines or MMR vaccine are associated with ASDs.” Such claims “lack supporting evidence and are only theoretical.”
With new rate, the autism advocacy group, SafeMinds published a press release in which SafeMinds president Lyn Redwood, RN stated, “We are truly in the midst of an epidemic.” One of the things she asked for was that the CDC “acknowledge the epidemic increase in autism rates.”
At the same time, National Autism Association President Wendy Fournier in the Providence Journal said, “Autism is a crisis. It’s an epidemic. We’re renewing our call to the CDC to declare that autism is a national emergency.”
That’s highly unlikely. If the CDC won’t call autism a “crisis” or “epidemic,” they sure aren’t going to use “emergency” anywhere near the word autism.
Others however, echo the call to recognize autism as a national health care emergency. F. Edward Yazbak, MD, FAAP wrote Autism 99: A National Emergency which summarized a report on autism in 1999 by the California legislature that showed “a massive and persistent rise in the incidence of this disease.” Dr. Yazbak also cited the exponential increase in autism in New Jersey, Pennsylvania, Colorado, Missouri, and Rhode Island. In other words, the explosion in autism wasn’t just an isolated fluke, it was everywhere.
In Autism 2000: A Tragedy, Dr. Yazbak focused on the 26% annual autism increase in U.S. schools. The next year he wrote, Autism 2001:The Silent Epidemic, in which he gave the stunning figures out of California of 7 or 8 new cases of autism a day in that state. Dr. Yazbak asked why the CDC continued to ignore autism, “One can only imagine the outcry if there was an outbreak of 4,000 cases of any other pediatric illness in the same three month period. The CDC specialists would be clamoring for a cure and seriously looking for the clues to the epidemic.”
In his best selling book, Evidence of Harm, author David Kirby wrote that through the efforts of autism advocate Rick Rollins of the Mind Institute, the California legislature produced the “first-ever comprehensive epidemiological report on the increase of autism cases in California.” Rick broke that down to “one new child every four hours” diagnosed with autism in the state. He added, “Each of those kids would end up costing taxpayers at least two million dollars.” Furthermore, “unlike children with cancer or AIDS, autistic kids don’t die from their disease. These facts don’t seem to get the attention of the CDC and autism is downplayed. Officially calling autism an “emergency,” “epidemic,” or “crisis,” would necessitate taking action.
The clock is ticking however. The generation of autistic children will soon become the generation of autistic adults dependent on the U.S. taxpayers for support and care. The first wave will be aging out in the next few years and the autism epidemic will be evident to everyone. When that happens, it will no longer be just a crisis. It will be a disaster.
Anne McElroy Dachel
amdachel @ msn.com
Member:
A-CHAMP
(Advocates for Children's Health Affected by Mercury Poisoning)
http://www.a-champ.org
National Autism Association (NAA)
http://www.nationalautismassociation.org
Canada is cursed by the same nonchalant ignorance on the part of our leaders. Prime Minister Stephen Harper, after ordering his troops to vote down a motion to amend the Canada Health Act to provide funding for autism treatment across Canada, then put a budget before Canadians which did not dedicate a single penny to provide funding for autism treatment. Prime Minister Harper was not just heartless toward autistic children and adults with the middle finger salute he gave them; he also demonstrated his own ignorance of a serious health crisis which will soon hit Canadians very very hard financially in providing supervision and care for autistic adults, now numbering 1 in 150.
Autism: "A Serious Public Health Problem"
Tuesday, 10 April 2007, 11:41 am
Opinion: Guest Opinion
Autism: “A Serious Public Health Problem”
By Anne McElroy Dachel
The article about autism, No Know Cause, No Cure by Jennifer Chancellor in the Tulsa World on April 1 got my attention. It wasn’t because we were again told that no one knows for sure why one in every 150 U.S. kids is now autistic, or that experts have no idea how to cure them. That’s pretty much the way autism is covered in the press. What stood out to me was the first part of the statement, “The CDC has called autism a national public health crisis.”
As someone who has read news reports on autism for several years, I’ve yet to see the Centers for Disease Control and Prevention use the term “crisis” when talking about autism.
Maybe I missed it somewhere, but after several days searching through CDC press releases on autism, it just wasn’t there.
The Oprah Show covered autism on April 5. Oprah started the program by saying that the CDC calls autism a “national health threat.” That was the first time I’d seen a term as strong as “health threat” used by the CDC in referring to autism. Oprah said that 67 children a day in the U.S. are diagnosed with autism, making it one every 20 minutes. That seems like a lot more than just a “health threat.”
The CDC is extremely careful when mentioning autism. For instance, in February when announcing the results of a 5 year old study revealing an autism prevalence rate of one in 150 among eight-year olds, the “C” word was never mentioned. "Autism is a serious public health problem which impacts too many children and their families," said CDC Director Julie Gerberding, MD, MPH. Is “Serious public health problem” as alarmed as the Director is about autism in 2007?
So why is it that autism doesn’t deserve a crisis rating by the CDC? Lots of other diseases and disorders do. They’ve come out in official statements calling HIV/AIDS a “crisis.” The explosion in the rate of diabetes in the U.S. is a “crisis” to the CDC too. The CDC has an official “Bird Flu Crisis Plan” ready for when the avian flu actually affects someone in the U.S. We officially have a “childhood obesity crisis” and an “asthma crisis” according to the CDC.
While I’m not arguing that diseases and disorders like AIDS and diabetes don’t deserve to be called crises, I’m just continually amazed that the CDC doesn’t consider autism in a league with other serious health concerns.
Another term the health care officials are careful not to use in the same breath as autism is the word “epidemic.” Autism may affect more children than pediatric AIDS, juvenile diabetes and childhood cancer COMBINED, but autism is never an epidemic to the CDC. Surprisingly, the CDC refers to each of these other diseases on their own as epidemics.
As the autism numbers exploded from one in 10,000 in the 1970s, to one in 2,500 in the 1980s, to the present one in every 150 children in the U.S., the CDC kept telling us that it just wasn’t happening. When asked why more and more autistic kids are filling our schools, the federal health experts told us that doctors were getting better at recognizing autism. This “better diagnosing” explanation has just been reinforced with the claim that the new rate of one in 150 is because the CDC is getting better at counting.
The official autism website of the CDC makes no reference to either “epidemic” or “crisis.” The tone of the information has all the urgency of the CDC fact sheet on treating head lice. There’s no indication that autism costs the U.S. $90 billion a year and that it's projected to increase to $200-400 billion annually in ten more years, according to the Autism Society of America. Nor is there anything about the recent conservative estimate that each autistic person in the U.S. will cost the American taxpayers $3.2 million
Under “What is Autism Spectrum Disorder?” on the CDC website, we are told that “people with ASD often have problems with language, communication and social skills. ASD may display a certain set of behaviors, such as resisting change, repeating phrases or actions, not interacting with others in traditional conversation or play, or showing distress for unapparent reasons.”
That weak description doesn’t tell us how seriously affected many children with autism are. It doesn’t include the children with violent behavior who are a danger to themselves and to others, or the child who can’t talk at all and has no fear of dangerous situations and is in need of constant supervision.
And the CDC website fails to note the other health problems like chronic diarrhea, seizures, allergies, and asthma which often accompany autism.
The CDC may have their own reasons for avoiding attention-getting terms like “crisis” and “epidemic.” This is also the agency that runs the vaccine program. As the charge continues to be made that vaccines are directly related to the explosion in the autism rate, the CDC continues to deny it.
On the CDC website, they say, “No one knows exactly what causes Autism Spectrum Disorders.” They cautiously say that “experts believe genetic and environmental factors probably interact in complex ways to contribute to the onset of the disorder,” but they’re quick to tell us, “…neither thimerosal-containing vaccines or MMR vaccine are associated with ASDs.” Such claims “lack supporting evidence and are only theoretical.”
With new rate, the autism advocacy group, SafeMinds published a press release in which SafeMinds president Lyn Redwood, RN stated, “We are truly in the midst of an epidemic.” One of the things she asked for was that the CDC “acknowledge the epidemic increase in autism rates.”
At the same time, National Autism Association President Wendy Fournier in the Providence Journal said, “Autism is a crisis. It’s an epidemic. We’re renewing our call to the CDC to declare that autism is a national emergency.”
That’s highly unlikely. If the CDC won’t call autism a “crisis” or “epidemic,” they sure aren’t going to use “emergency” anywhere near the word autism.
Others however, echo the call to recognize autism as a national health care emergency. F. Edward Yazbak, MD, FAAP wrote Autism 99: A National Emergency which summarized a report on autism in 1999 by the California legislature that showed “a massive and persistent rise in the incidence of this disease.” Dr. Yazbak also cited the exponential increase in autism in New Jersey, Pennsylvania, Colorado, Missouri, and Rhode Island. In other words, the explosion in autism wasn’t just an isolated fluke, it was everywhere.
In Autism 2000: A Tragedy, Dr. Yazbak focused on the 26% annual autism increase in U.S. schools. The next year he wrote, Autism 2001:The Silent Epidemic, in which he gave the stunning figures out of California of 7 or 8 new cases of autism a day in that state. Dr. Yazbak asked why the CDC continued to ignore autism, “One can only imagine the outcry if there was an outbreak of 4,000 cases of any other pediatric illness in the same three month period. The CDC specialists would be clamoring for a cure and seriously looking for the clues to the epidemic.”
In his best selling book, Evidence of Harm, author David Kirby wrote that through the efforts of autism advocate Rick Rollins of the Mind Institute, the California legislature produced the “first-ever comprehensive epidemiological report on the increase of autism cases in California.” Rick broke that down to “one new child every four hours” diagnosed with autism in the state. He added, “Each of those kids would end up costing taxpayers at least two million dollars.” Furthermore, “unlike children with cancer or AIDS, autistic kids don’t die from their disease. These facts don’t seem to get the attention of the CDC and autism is downplayed. Officially calling autism an “emergency,” “epidemic,” or “crisis,” would necessitate taking action.
The clock is ticking however. The generation of autistic children will soon become the generation of autistic adults dependent on the U.S. taxpayers for support and care. The first wave will be aging out in the next few years and the autism epidemic will be evident to everyone. When that happens, it will no longer be just a crisis. It will be a disaster.
Anne McElroy Dachel
amdachel @ msn.com
Member:
A-CHAMP
(Advocates for Children's Health Affected by Mercury Poisoning)
http://www.a-champ.org
National Autism Association (NAA)
http://www.nationalautismassociation.org
Raising An Autistic Child - Reality Check # 1
Raising an autistic child brings both great joy and great challenges, for the parents and for the child's brothers and sisters.
As a father nothing lifts my spirits more than arriving home after a tough day at work and seeing Conor's face pressed against the window waiting for Dad. I went to a local pub to watch the Toronto Maple Leafs - Montreal Canadiens hockey game two nights ago and returned after my sons were asleep. I found out the next day that Conor had tried to summon me home the evening before by asking Daddy, Daddy and when that didn't work taking his mom's hand and walking to the front door saying Harold Doherty, Harold Doherty. I can not tell you how much Conor strengthens his Dad every single day.
Yesterday was a big Dr. Seuss day for Conor and he pulled out one favorite after another to read -Cat in the Hat Comes Back, Hop on Pop, Oh Say Can You Say, I Can Read with My Eyes Shut. I can not describe the joy that I feel with every word that I hear Conor read.
Yesterday Conor wanted tickles. His laughter from playing tickle games is totally infectious. Conor also decided to lean back on the two rear legs of one of the kitchen chairs. When Dad told him "chair, floor" he put the chair fully on the floor on all four legs. Then he leaned back again. I walked around the corner of the kitchen entrance and Conor leaned back again. When I popped my head around the corner he laughed in suprise. We did that several times. Although I was trying to correct his behavior so the chair would not be ruined and he would not be hurt by falling back to the floor I could not help but laugh and take joy in this game of peek a boo, a game which Conor did not play at an age most children would have begun playing it.
Despite the great joy, the happiness and the pure all out fun that raising Conor brings there is very a dark side to the reality of autism and raising an autistic child. The courageous parents of the Autism Every Day video presented that reality for all the world to see - and judge. Two days ago while I waited with Conor at a local mall while his brother completed a transaction (involving trading in of old video games for a new WII Warrio game) Conor, understandably, had a small meltdown. The mall was crowded with people shopping while the stores were open on the long holiday weekend. Most people even encountering a tantrum are understanding but some are quick to judge even if they do not dare voice their judgment. One gentleman walked by with a disapproving looking back as he walked and while Conor engaged in a tantrum. For me, such uninformed judgmental behavior is not a big deal but it happens to many families with autistic children and it does wear down many families as a recurring stressful situation in their lives.
On the difficult side of raising a child with autism, or at least a child with severe or classic autism, is the self injury and injury to others that sometimes occurs. There are times when Conor's behavior is flat out dangerous. Yesterday Conor unexpectedly and with no provocation lashed out and hit his brother on the leg. His brother was not hurt but it was still an assault and Conor is growing bigger and stronger. A potentially more serious event occurred during that same drive when Conor threw an object past my ear while I was driving. That is part of the dark reality of autism for many families - the potential or risk or injury to family members including brothers and sisters. Yesterday's drive was a reality check. It is the type of reality you will not hear about from feel good about autism web sites, movies or television shows but it is real and it is a reality that parents and families of autistic children can not wish away or avoid.
Attached is a link to, and an excerpt from, an article by David Royko which describes some of these realities as he has experienced them.
http://tinyurl.com/2w2sf5
What It's Really Like To Raise a Child with Autism
My son is 8 and big for his age, but he acts like a toddler -- tantrums and all.
By David Royko
I set my sights on the turn in the road up ahead, hoping Ben will somehow see the slight change of direction as a good place to turn around. He doesn't, and we don't. I become more and more concerned, finally turning back myself and saying, "Okay, Ben, I'm going back now. Bye-bye." Luckily, he follows me.
My good mood restored, we are about three minutes into our long haul back when the tantrum begins. Actually, the word "tantrum" doesn't really do justice to what's happening. Some behavioral specialists use the term "behavioral seizure," which, in its clinical cleanliness, also misses the mark. I have yet to come up with a phrase that captures it. It's one of those things where "ya hadda be there."; But you don't want to be.
Ben stops walking and starts hopping on one foot. He screams and hits himself with full force on the sides of his head. He bends forward at the waist, flings himself back up, screeches loudly, smashes himself in the face with his left hand, and then sobs, all in about five seconds. Uh-oh. I realize we have gone too far.
I grab him by the wrists and say, "Come on, Ben. We have to walk to the car. No hitting." He screams again. He shifts into dead weight and crumples to the ground. Now he is on all fours on the sidewalk, slapping himself in the face.
As a father nothing lifts my spirits more than arriving home after a tough day at work and seeing Conor's face pressed against the window waiting for Dad. I went to a local pub to watch the Toronto Maple Leafs - Montreal Canadiens hockey game two nights ago and returned after my sons were asleep. I found out the next day that Conor had tried to summon me home the evening before by asking Daddy, Daddy and when that didn't work taking his mom's hand and walking to the front door saying Harold Doherty, Harold Doherty. I can not tell you how much Conor strengthens his Dad every single day.
Yesterday was a big Dr. Seuss day for Conor and he pulled out one favorite after another to read -Cat in the Hat Comes Back, Hop on Pop, Oh Say Can You Say, I Can Read with My Eyes Shut. I can not describe the joy that I feel with every word that I hear Conor read.
Yesterday Conor wanted tickles. His laughter from playing tickle games is totally infectious. Conor also decided to lean back on the two rear legs of one of the kitchen chairs. When Dad told him "chair, floor" he put the chair fully on the floor on all four legs. Then he leaned back again. I walked around the corner of the kitchen entrance and Conor leaned back again. When I popped my head around the corner he laughed in suprise. We did that several times. Although I was trying to correct his behavior so the chair would not be ruined and he would not be hurt by falling back to the floor I could not help but laugh and take joy in this game of peek a boo, a game which Conor did not play at an age most children would have begun playing it.
Despite the great joy, the happiness and the pure all out fun that raising Conor brings there is very a dark side to the reality of autism and raising an autistic child. The courageous parents of the Autism Every Day video presented that reality for all the world to see - and judge. Two days ago while I waited with Conor at a local mall while his brother completed a transaction (involving trading in of old video games for a new WII Warrio game) Conor, understandably, had a small meltdown. The mall was crowded with people shopping while the stores were open on the long holiday weekend. Most people even encountering a tantrum are understanding but some are quick to judge even if they do not dare voice their judgment. One gentleman walked by with a disapproving looking back as he walked and while Conor engaged in a tantrum. For me, such uninformed judgmental behavior is not a big deal but it happens to many families with autistic children and it does wear down many families as a recurring stressful situation in their lives.
On the difficult side of raising a child with autism, or at least a child with severe or classic autism, is the self injury and injury to others that sometimes occurs. There are times when Conor's behavior is flat out dangerous. Yesterday Conor unexpectedly and with no provocation lashed out and hit his brother on the leg. His brother was not hurt but it was still an assault and Conor is growing bigger and stronger. A potentially more serious event occurred during that same drive when Conor threw an object past my ear while I was driving. That is part of the dark reality of autism for many families - the potential or risk or injury to family members including brothers and sisters. Yesterday's drive was a reality check. It is the type of reality you will not hear about from feel good about autism web sites, movies or television shows but it is real and it is a reality that parents and families of autistic children can not wish away or avoid.
Attached is a link to, and an excerpt from, an article by David Royko which describes some of these realities as he has experienced them.
http://tinyurl.com/2w2sf5
What It's Really Like To Raise a Child with Autism
My son is 8 and big for his age, but he acts like a toddler -- tantrums and all.
By David Royko
I set my sights on the turn in the road up ahead, hoping Ben will somehow see the slight change of direction as a good place to turn around. He doesn't, and we don't. I become more and more concerned, finally turning back myself and saying, "Okay, Ben, I'm going back now. Bye-bye." Luckily, he follows me.
My good mood restored, we are about three minutes into our long haul back when the tantrum begins. Actually, the word "tantrum" doesn't really do justice to what's happening. Some behavioral specialists use the term "behavioral seizure," which, in its clinical cleanliness, also misses the mark. I have yet to come up with a phrase that captures it. It's one of those things where "ya hadda be there."; But you don't want to be.
Ben stops walking and starts hopping on one foot. He screams and hits himself with full force on the sides of his head. He bends forward at the waist, flings himself back up, screeches loudly, smashes himself in the face with his left hand, and then sobs, all in about five seconds. Uh-oh. I realize we have gone too far.
I grab him by the wrists and say, "Come on, Ben. We have to walk to the car. No hitting." He screams again. He shifts into dead weight and crumples to the ground. Now he is on all fours on the sidewalk, slapping himself in the face.
Saturday, April 07, 2007
Dr Sheila Laredo's Senate Testimony on ABA as Evidence Based Autism Intervention
[Dr. Sheila Laredo, above right, with lawyer Mary Ebert]
The Canadian Senate heard testimony from a range of individuals with diverse opinions on all autism related issues. The Senate Committee did not delve too far into the treatment issues in its recommendations, taking a relatively safe "survey" approach of pointing out that there is disagreement about the effectiveness of autism interventions and calling for more research. The Senate Committee made no effort to weigh or assess the expertise or credibility of the persons who offered commentary on the subject. Nonetheless the Senate Committee transcripts of the evidence offered is available on line and there is some very valuable information available. One particularly important witness was Dr. Sheila Laredo who explained the concept of evidence based interventions and stated clearly that no other autism intervention enjoys near the body of supportive evidence of its effectiveness as does ABA. Dr. Laredo is both a parent of two autistic children and a researcher.
Dr. Sheila Laredo, as an individual: I am honoured to speak to you today. I am speaking as a parent of three children, two of whom have autism, as an advocate in my role as a litigant in a case, and as a researcher. I will focus my comments on funding for effective evidence-based interventions. That is in the purview of both my experience and expertise.
It is an important time to consider this as the provincial governments are starting to review their policies for children with autism, certainly, in Ontario, where I live. I feel that the federal government can play a role by ensuring that evidence-based consistent standards are developed and implemented across Canada.
With respect to my own experience, when my first child was diagnosed, our family was devastated. While my son was very verbal, all he could do was repeat what other people said. He could not respond. At the age of three and a half, he was in diapers, he had tantrums every day, many times a day, spent his time flicking lights on and off and spinning whatever he could get his hands on, breakable or not. Within months of his diagnosis, when his younger brother failed to start to speak, we knew we had a second son with autism as well.
After that diagnosis, I thought that my mother's hat would be best served using my scientific one so that I could find an effective intervention for him. It did not take long to see that the pop literature on the internet was full of contradictory, confusing and biased information.
Instead I went to the scientific literature. I was fortunate to be able to do that. That is where I found ABA. My bias is evident. I am a physician, and a PhD in clinical epidemiology, which means that my expertise is in research methods. Despite the heat and emotions of some of the witnesses you have heard, I can tell you there is a correct way to assess the quality of literature.
In my brief, under appendix A, I provided you research materials that demonstrate that there is consensus across the medical literature, psychological literature and educational literature and that there is a hierarchy of evidence with randomized control trials being the best evidence when it comes to looking at the effectiveness of interventions.
Expert opinion, like mine, is the lowest form of evidence. That is why I have provided you with all these documents to back up what I say.
Using that knowledge, I then reviewed many of the papers that I provided to you in appendix B, including the randomized and nonrandomized controlled clinical trials of the ABA intervention. While no study is perfect, there are no other randomized trials of any research interventions, nor large clinical trials demonstrating effectiveness as ABA does. Although some have suggested that the research is biased, it is consistent across research groups, across continents, across age groups and across settings, whether it is at schools, in centres, or in homes. Other treatments like facilitated communication and auditory integration have not held up to scientific scrutiny, and other interventions have had no research at all.
Despite these comments, I have absolutely no stake in ABA. The moment something else is found to be more effective, you can be that sure we will switch.
One criticism of ABA is that it has not been effective for all people. That is probably true. The fact that not all children will be cured by ABA does not preclude the fact that the majority of children will enjoy a profound and substantive benefit. My children have learned to read, write and speak without tantrums all the time and to participate in a regular class. ABA should not be held to a standard that is not expected for other interventions. When we give chemotherapy for cancer or cholesterol drugs for prevention of heart disease we strive for 100 per cent effectiveness but we do not achieve it. ABA meets and exceeds the standards we set for other treatments.
Another criticism is that ABA or IBI is unethical because it does not respect the autistic individual. I applaud those individuals that have done so well they can speak to you today despite the fact that they have not needed ABA. Unfortunately, the dismal data is that such individuals are in the tiny minority. The fortunate experience of exceptional cases should not set policy for the vast majority of individuals with autism — people like my sons.
It has been difficult for us to implement ABA. There has been little help from medical and social services agencies. We had other family members teach us how to set up and implement an ABA program. We managed, because we had many advantages. We have a highly supportive extended family. My husband and I are professionals and our colleagues have extended us many courtesies. Our children participated in the Ontario Autism Intervention Program.
With all that, we struggled. These advantages are not the case for the majority of families. Governments can help. They have started to help, but more can be done. Too little intervention will result in the majority of autism dollars being spent on providing heavily supported living or institutional living where children could have been taught to try to support themselves. It is analogous to the parable give a man a fish, feed him for a day; teach him to fish, feed him forever. However, it has been argued that ABA is too expensive.
Peter Coyte is a nationally respected health economist who has published data demonstrating that the average savings over the lifetime of a child who receives ABA, even taking into account the fact that not all children are cured and not all children even receive some benefit, is over $1,000 per child. Almost no medical interventions save money. Despite that, we undertake them. For example, diabetes costs Canadians $9 billion a year. The issue is not reallocating money from health expenditures but that we look at autism expenditures in the context of important health spending, in particular when we know a striking benefit is possible.
From Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue 12 - Evidence - December 6 meeting
Friday, April 06, 2007
Hyperbaric Oxygen Therapy Autism Study
The image above is that of a Hyperbaric Chamber found on the Hyperbaric Medicine Center's web site which provides a description of HBO Treatment:
The treatments are non-invasive (no needles or pills are involved), and painless.
A patient undergoing treatment spends a prescribed amount of time sitting comfortably in a very special body-length chamber, where pure oxygen is administered and atmospheric pressure is increased and controlled under meticulous conditions. The dosage, which includes pressure, time and frequency of treatments, is suited to each patient’s specific diagnosis, and has been prescribed as a recognized protocol by the top hyperbaric medicine experts in the world.
Hyperbaric oxygen therapy is based on simple concepts. The air we breath has a small percentage of oxygen. Breathing 100% oxygen in a normal room increases that level of oxygen in the bloodstream by about 3% to 5%. However, breathing pure oxygen in an increased-pressure environment delivers twenty to thirty times that amount of oxygen to your body’s tissues. This is especially important in tissues affected by poor circulation such as brain tissues damaged by stroke or head injury.
In order to provide patients with Hyperbaric Oxygen Therapy, a pressurized environment is used. The patient is placed within a hyperbaric chamber, which is then pressurized to therapeutic levels. Trained hyperbaric medical staff will determine the pressure and the length of treatment based upon carefully studied and recommended protocols.
The Hawaii Reporter is carrying an article on a study about to begin in 20 centers across the US on the use of Hyperbaric Oxygen Therapy in treating autism. Autism has been plagued by "treatments" and "therapies" with no scientific basis or evidentiary support for their effectiveness from NAET to swimming with dolphins to Facilitated Communication. But evidence to substantiate or refute the effectiveness of treatments and therapies can not be obtained unless studies are done.
HBOT is based on the premise that in some cases a persons brain may suffer from a lack of oxygen supply. The author of the article, Maryellen Markley, Ph. D., Director of the Hyperbaric Medicine Center in Honolulu, claims that HBOT can improve the quality of life for autistic persons. It will be interesting to see what evidence to support that claim emerges from the study when the results are published in June 2007.
"Hyperbaric oxygen therapy (HBOT) can compensate for decreased blood flow by increasing the oxygen content in the blood and body tissues and can even normalize oxygen levels in oxygen-deprived (ischemic) tissue. In addition, a number of studies have shown that HBOT has potent anti-inflammatory effect on the brain.
Furthermore, recent evidence demonstrates that HBOT increases the production of an important form of cells from human bone marrow, which may aid recovery from neurodegenerative diseases including autism.
Based upon these findings, hyperbaric oxygen therapy is being used more and more to permanently improve both symptoms and the quality of life in children with autism. ...
The Hyperbaric Medicine Center's Autism Study begins this month with 20 children, and each child will be treated with 20 hours of hyperbaric oxygen therapy. Each child will be tested by experienced clinicians in the community both before and after their 20 hours of therapy, and the results are expected to be published by late June, 2007. "
http://www.hawaiireporter.com/story.aspx?0d6f3ff1-6ab8-4e15-b8f6-16ec3f608c82
http://www.hyperbaricmedicinecenter.com
Thursday, April 05, 2007
Autism Realities in the African American Community
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AUTISM FINDS A HOME IN THE AFRICAN AMERICAN COMMUNITY: And All is Not Well.
By Donna Ross Jones and Areva Martin, Esq.
(April 5, 2007)
(Los Angeles, CA) - What happens to children who have been diagnosed with autism or some other developmental disorder? They grow up. And, more often than not, somewhere along the way they get into trouble with the law.
An excellent case in point is the controversial July 2002 beating of 16 year-old Inglewood, CA resident, Donovan Jackson. When his father was admonished by local police for driving with expired license plates on his automobile, young Donovan was severely beaten and slammed head first onto the trunk of the police officer's vehicle for supposedly not adhering to their commands. The incident was videotaped and it was later learned that the visibly confused and scared young man was developmentally disabled.
On any given day, approximately 130,000 youth reside in juvenile detention and correctional facilities nationwide. Studies have consistently shown that anywhere from 65 percent to 70 percent of these youth have a diagnosable mental health or developmental disorder. Approximately 25 percent are experiencing disorders so severe that their ability to function is severely impaired, according to data released by the National Center for Mental Health and Juvenile Justice.
This situation is further exacerbated by the fact that the U.S. Department of Justice reports many of its juvenile justice facilities are inadequate in their response to the needs of developmentally disabled youth in their care. These and other reports have shed light on an issue that virtually went unnoticed for decades.
Even worse, as in most other areas of the justice system, African Americans are disproportionately represented. Comprising approximately 15 percent of the total national youth population, African American youth represent 40 percent of all juveniles in detention and 60 percent of young offenders serving time in adult state prisons.
In addition, according to the U.S. House of Representatives, many of these youth are detained or placed in the juvenile justice system for relatively minor offenses and end up in the system simply because of a lack of community-based service options. And, that's where the problem starts.
Two years ago, we formed the Special Needs Network, Inc. (SNN) to bring attention to the epidemic of autism and other developmental disorders. Working on a grass roots level to create immediate- and long-term change for families, SNN continues to seek to raise awareness about developmental disabilities, especially in the African American community, and to offer resources and other ways to navigate through the bureaucratic red tape to obtain services.
Defined as a neurological condition that occurs in children 15 to 19 months of age, autism is a developmental disability that affects a person's ability to communicate and socially interact with others. Four times more prevalent in males, autism is now considered a public health crisis that has reached epidemic proportions, along with other mental, physical, or learning disabilities.
Statistics released earlier this year by the U.S. Centers for Disease Control and Prevention indicate that autism is more common than previously believed with one in 150 children being diagnosed on the autism spectrum versus one in 166 two years ago.
Mothers of autistic children ourselves, we were astounded at the difficulty in finding services for our children. We were equally astounded at the numbers of children of color being diagnosed, or misdiagnosed with autism and the fact that most of these children were being diagnosed two years later than the general populous.
We now know that the only scientifically proven way to guarantee positive outcomes for children with autism and other developmental disorders is early diagnosis and intensive early intervention. Called applied behavior analysis, this early intervention is a very systematic way to teach our children about how to cope with our environment and must begin at a very early stage when the brain is still developing. We have to teach them how to function our world.
Unfortunately, most children of color are not generally diagnosed until age five years, while others are diagnosed and begin treatment by age three years. Later diagnosis equals later treatment, coupled with the fact that people of color generally have fewer resources from the start.
To help combat the lack of special needs support services and resources, Special Needs Network, Inc. will host "Tools for Transformation: Two Days of Free Training, Resources and Advocacy for Families Raising Children with Autism Spectrum Disorder and Other Developmental Disabilities" beginning at 8 a.m. on two Saturdays, April 14th and 21st in the Challengers Boys & Girls Club facility, 5029 S. Vermont Blvd.
In addition to free training for parents, professionals and community leaders by experts in the field, the two days will offer a free legislative breakfast, more than six hours of free training, a free resource fair, a free legal clinic, free lunch, free childcare, and a free medical update breakfast and transportation stipends for the first 50 families attending.
To register or obtain additional information call the Special Needs Network, Inc. at 323.692.7772 or visit its website at www.specialneedsnetwork.net.
NOTE: SNN co-founders include Areva Martin, Esq., Martin & Martin LLP (L.A.'s largest African American female-owned law firm), and Donna Ross Jones, president, Transition Music Corporation and featured as one of "50 Most Influential Women" by the Hollywood Reporter.
Wednesday, April 04, 2007
Autism Speaks at Conor's House
Autism Speaks has done a terrific job in raising Autism Awareness and in emphasizing the need to take action to cure autism, to provide effective autism interventions and to raise funds for research into autism causes and cures.
At Conor's house we do not wring our hands and agonize over the right metaphors to use while talking about autism issues. Our priorities are found in improving Conor's ability to participate in and enjoy life to the fullest extentpossible. We find joy in Conor not in his autism and we seek not to "accept autism" but to provide Conor with evidence based treatment and education to overcome to the fullest extenet possible the deficits that autism brings. To date only ABA meets the evidence based standard but other evidence based interventions may emerge with research. And Autism Speaks is a driving force today in raising awareness and funds for that research.
At Conor's house Autism Speaks and we are listening.
Tuesday, April 03, 2007
Government Was Warned - Now The Time To Pay $3.2 Million Autism Bill Has Already Arrived!
The autism world is buzzing today over a Glove and Mail article which discusses in a frank and straightfoward manner the societal costs, estimated at $3.2 million per person of caring for autistic adults. The costs are derived from the inability of many adults to work and care for themselves. These are some of the unpleasant realities that the rose coloured glasses brigade do not want discussed. But now government is being hit in the face with these realities. The Canadian Senate recently issued a report, a very flawed report, which warned that Canada would have to pay now or pay later for the costs of autism treatmnet and care. That part of the Senate Report at least was right if action is not taken to ensure that proper evidence based treatment for autism is not funded society ends up paying much more down the road.
It is not like government was not warned. In Canada the courageous parents who litigated the Connor Auton case started telling government over a decade ago that the financial burden to society down the road would be tremendous if early ABA intervention was not provided intensively right away and funded. Government chose to fight and resist all the way to the Supreme Court of Canada. Along the way government received unexpected help form such sources as Psychiatrist Laurent Mottron an alleged autism expert who publishes reports on dozens of autism cases a year, almost all involving high functioning autistics and Asperger's Persons, almost none involving the low functioning autistic persons who require such expensive intensive residential care and treatment as adults.
In New Brunswick parents were subjected initially to a different response from government. Here we were asked to wait dutifully while an Inter Departmental Committee of Health, Family and Education civil servants along with hand picked "stakeholder" representatives met to assess what services were available specifically for autism needs in New Brunswick. The report and its recommendations were submitted to government where it went unread by the lead Minister Elvy Robichaud for 10 months, by his own public admission. The report's recommendation were timid and only contained a recommendation for evidence based interventions because a local Fredericton activist group called FACE kicked up a fuss. It took another year after the reports release before the government committed on paper to fund pre-school interventions for autistic children. Only now are Teachers and Teachers Assistants being trained in New Brunswick at the excellent UNB-CEL Autism Intervention Training Program.
The cost of government foot dragging in New Brunswick and across Canada on autism issues is now becoming clearer. In New Brunswick residential care and treatment for autistic youths and adults is virtually non-existent. Essentially our more difficult cases are shipped out of province, sometimes out of Canada, to seek treatment. Residential care is essentially custodial care for many autistic youths and adults and they sometimes end up charged with assault when friction arises between untrained residential care workers and autistic residents.
Government was told this day was coming. But it is not down the road as the Senate indicates although the problem will undoubtedly get even bigger down the road. The future, the unpleasant future is now in New Brunswick and much of Canada for the substantial numbers of autistic adults living little more than a custodial existence; cared for by untrained staff and lacking in appropriate medical care.
"Autism a lifelong burden, study shows
Because few adults with the disorder can work, the economic costs continue
ANDRÉ PICARD
Each child diagnosed with autism will accrue about $3.2-million (U.S.) in medical and non-medical costs over his or her lifetime, according to a new study.
The most expensive components are lost productivity and adult care, not medical costs and behavioural therapies that so many parents crave for their children, the research shows.
"Although autism is typically thought of as a disorder of childhood, its costs can be felt well into adulthood," said Michael Ganz, an adjunct professor in the department of society, human development and health at Harvard University in Cambridge, Mass., and the lead author."
Monday, April 02, 2007
FEAT-BC Response to Senate Autism Report
Monday, April 2, 2007
Vancouver, BC - “The Senate report ‘PAY NOW OR PAY LATER, Autism Families in Crisis’, released to the public last Thursday is yet further evidence that, no matter how serious the public policy issue, there is absolutely no sense of urgency in Ottawa about it”, said Jean Lewis, a founding director of FEAT-BC [Families for Early Autism Treatment of BC]. “While the sub-title of the report acknowledges the existence of a crisis for those families [more every day in Canada] that have an autistic child or children, the Senate recommends that the federal government convene an inter-governmental ministerial conference and implement a national public awareness campaign. This report is worthy of Sir Humphrey Appleby of Yes, Minister fame.”
Despite the existence for 25 years in our country of a Charter of Rights, and the operation for even longer of an allegedly universal health care system, autistic children continue to be denied access to appropriate public-funding for medically necessary treatment. “The title of the Senate’s report, ‘PAY NOW OR PAY LATER’ speaks volumes”, states Dr. Sabrina Freeman, founder and executive director of FEAT-BC. “Why is this core health need continually addressed in financial terms when such is not the case with, for instance, AIDS/HIV, cancer, heart disease or orthopaedic surgery?”
Contrast the Senate recommendations, and the approach to date of the federal government, with what is happening in the United States. Last year, the US Congress unanimously passed the “Combating Autism Bill”, legislation that puts $945 million into the fight against this epidemic disease. In recent weeks, two US Senators have introduced another bill, one that will, if passed, pour a further $350 million into key treatments and services for autistic children and adults, together with their desperate, and often destitute, families.
Our Senate has missed the point with this report. It has, however, re-inforced the determination of parents of autistic children across Canada to participate aggressively in the upcoming federal election campaign in an effort to elect MPs, regardless of partisan affiliation, who will fight for Medicare coverage for autism treatment now.
Further information, contact:
Jean Lewis
604-925-4401
604-290-5737
jean.lewis@telus.net
Kaiser Permanente Study - Autism Risk Rises with Ages of Moms & Dads
Risk of Autism Rises With Age of Moms, Dads
2007-04-02 22:05:06 -
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OAKLAND, Calif., April 2 /PRNewswire/ -- Men and women who wait to have babies later in life may increase their children's risk for autism, according to a Kaiser Permanente study featured in the April issue of Archives of Pediatrics & Adolescent Medicine, one of the JAMA/Archives journals.
The study investigated 132,844 children born at Kaiser Permanente hospitals in its Northern California region over a five-year period (1995-1999) and identified 593 children who had been diagnosed with an autism spectrum disorder (ASD).
Study results show that a mother's and father's risk of delivering a child with autism steadily increases as they get older. Women ages 40 and older showed a 30 percent increase in risk for having a child with autism (1 in 123), when compared to moms between the ages of 25 and 29 (1 in 156). Men ages 40 and older had up to a 50 percent increased risk of having a child with autism (1 in 116), when compared to their 25- to 29-year-old peers (1 in 176).
Advanced age of mothers has been associated with risk of autism in several, but not all earlier studies, according to study author Lisa A. Croen, PhD, an epidemiologist at Kaiser Permanente's Division of Research in Oakland, Calif. The role of a father's age in autism has been less frequently studied, although advanced paternal age has been associated with other adverse reproductive outcomes, including miscarriage, childhood cancers, autoimmune disorders, schizophrenia and other neuro-psychiatric disorders.
"As men age, there is an increased frequency of new mutations in the cells that go on to become sperm," said Dr. Croen. "These sporadic mutations could be related to autism risk. It is possible that non-genetic factors that are more common in older parents might also account for our findings."
For reasons not fully understood, autism is on the rise, affecting on average about one in 150 children born in the United States, according to the Centers for Disease Control and Prevention, which helped fund the study. The chronic, life-long condition affects the normal functioning of the brain, impacting development of social and communication skills.
While the cause of autism is unknown, there is strong scientific evidence that the condition is genetic. Environmental factors -- such as infections, medications and pesticides -- are also being investigated for their possible role in the cause of autism.
Children with autism are four more times likely to be male. According to the study, children with the disorder were also more likely to have older, more highly educated and white, non-Hispanic parents.
A growing number of autism cases several years ago caused Kaiser Permanente physicians and leaders from throughout Northern California to design a regional program that would best serve the needs of parents and children. Using best practices, the Regional Program for Autism Spectrum Disorders (ASD) was established in 2004 under the direction of Pilar Bernal, MD.
Today, the regional program includes a team of ASD clinical champions from all of Kaiser Permanente's pediatric psychiatry and pediatric clinics in Northern California. It also includes two regional Autism Spectrum Disorders Centers, currently located in San Jose and Rancho Cordova. A third center is being planned for the Bay Area.
Research shows that early intervention can greatly improve a child's development. Kaiser Permanente provides routine autism screening for newborns to age 2 during well-baby check-ups, allowing pediatricians to refer very young children to the regional centers who they suspect may have symptoms of autism.
Dr. Croen notes the study data suggest that advanced maternal and paternal age are independently associated with ASD risk. Age effects were found to be independent of birth year and thus not explained by the increasing age of parents that has been observed in recent years. If the relationship between parental age and autism is causal, the fraction of autism in this sample attributable to having a mother or father older than 35 years is 4 percent to 13 percent, Dr. Croen says.
Future investigations are warranted that focus on the identifications of both genetic and environmental factors that correlate with advanced parental age, Dr. Croen says.
Interviews with Dr. Croen and a full-text version of the study are available upon request.
The Kaiser Permanente Division of Research conducts, publishes, and disseminates epidemiologic and health services research to improve the health and medical care of Kaiser Permanente members and the society at large. It seeks to understand the determinants of illness and well being and to improve the quality and cost-effectiveness of health care. Currently, the center's 400-plus staff is working on more than 250 epidemiological and health services research projects.
Kaiser Permanente is America's leading integrated health plan. Founded in 1945, it is a not-for-profit; group practice prepayment program headquartered in Oakland, Calif. Kaiser Permanente serves the health care needs of more than 8.6 million members in nine states and the District of Columbia. Today it encompasses the not-for-profit Kaiser Foundation Health Plan, Inc., Kaiser Foundation Hospitals and their subsidiaries, and the for-profit Permanente Medical Groups. Nationwide, Kaiser Permanente includes approximately 156,000 technical, administrative and clerical employees and caregivers, and more than 13,000 physicians representing all specialties.
http://www.kaiserpermanente.org/
Source: Kaiser Permanente
Sunday, April 01, 2007
Invisible Autistics
[Picture of 11 year old Conor Doherty, my buddy. Conor is a low functioning autistic person diagnosed with classic Autism Disorder, assessed as "severely autistic with profound developmental delays"]
The Mainstream Media loves to present feel good stories about autism. With 1 in 150 persons suffering with autism spectrum disorders the mainstream media invariable gravitates towards the higher end of the autism spectrum. Dr. Sanjay Gupta at CNN is a classic example with his interview of an autistic person who writes very sophisticated articles from a keyboard and is a prolific internet blogger. In the US April is autism Awareness month and the heartwarming stories and interviews with high functioning autistic persons will hit the media again.
Katie Couric and NBC's Today Show will feature a charming intelligent and high functioning autistic teen. These are nice stories and they are stories that SHOULD be told. But where are the MSM interviews wih, or visits to meet, low functioning autistic persons? David Suzuki took a realistic look at some persons with more severe autism in a 1996 episode of CBC's "The Nature of Things". But that was Canada (the CBC) 11 years ago. In today's ratings driven "entertainment as news" media world, there are unlikely this April to be any mainstream media visits to mental health facilities or residential care facilities where severely autistic youths and adults might be found; often living minimal custodial existences.
Stories about autistic persons with limited language skills, who engage in self injurious or aggressive behavior, or are sedated by medications, aren't likely to make the Mainstream Media coverage of autism this April. Low functioning autistic persons living in custodial care are not the stuff of feel good stories. They will likely remain hidden away out of sight, unseen in our modern media society.
They are our invisible autistics.
Saturday, March 31, 2007
A Fredericton Autism Father Thanks MP Andy Scott
Brian Rimpilainen is a Fredericton father of an autistic child who has been a hard working advocate on behalf of autistic persons in New Brunswick and Canada. In this letter Brian offers his appreciation to Fredericton MP Andy Scott who steered a private member's motion through the House of Commons calling for a national autism strategy.
To MP Andy Scott and his staff, I offer my sincere thanks for all the work that has been done to raise the awareness of autism at the federal level.
I was very proud to be in attendance for the second hour of debate for motion 172. I had to wipe my teary eyes as I shared in the frustrations of other parents across Canada. I hope that the Liberal Caucus will continue in support of Andy Scott's efforts and move the issue forward.
It does indeed look as though there will be a new federal election in the future. I hope that autism will be raised for election debate. While M-172 passed with support from both sides of the House, Bill C-304 (introduced by the MP for Charlottetown) did not. This was a disappointing outcome, considering that all Members now know of the importance and urgency of a national autism strategy.
It is to my understanding that Scott will not be running in the next election. My best wishes to his family and future endeavours.
BRIAN RIMPILAINEN
Fredericton
To MP Andy Scott and his staff, I offer my sincere thanks for all the work that has been done to raise the awareness of autism at the federal level.
I was very proud to be in attendance for the second hour of debate for motion 172. I had to wipe my teary eyes as I shared in the frustrations of other parents across Canada. I hope that the Liberal Caucus will continue in support of Andy Scott's efforts and move the issue forward.
It does indeed look as though there will be a new federal election in the future. I hope that autism will be raised for election debate. While M-172 passed with support from both sides of the House, Bill C-304 (introduced by the MP for Charlottetown) did not. This was a disappointing outcome, considering that all Members now know of the importance and urgency of a national autism strategy.
It is to my understanding that Scott will not be running in the next election. My best wishes to his family and future endeavours.
BRIAN RIMPILAINEN
Fredericton
Japanese Study Finds No MMR Autism Connection
Evidence to support a connection between the MMR vaccine and incidents of autism is hard to come by. An epidemiological study in Japan found no connection. Tokio Uchiyama, Michiko Kurosawa and Yutaka Inaba, in a July 2006 study, found no evidence to support a causal relationship between the MMR and autism:
Abstract It has been suggested that the measles, mumps, and rubella vaccine (MMR) is a cause of regressive autism. As MMR was used in Japan only between 1989 and 1993, this time period affords a natural experiment to examine this hypothesis. Data on 904 patients with autism spectrum disorders (ASD) were analyzed. During the period of MMR usage no significant difference was found in the incidence of regression between MMR-vaccinated children and non-vaccinated children. Among the proportion and incidence of regression across the three MMR-program-related periods (before, during and after MMR usage), no significant difference was found between those who had received MMR and those who had not. Moreover, the incidence of regression did not change significantly across the three periods.
http://www.springerlink.com/content/aq0470t874jwm686/
Abstract It has been suggested that the measles, mumps, and rubella vaccine (MMR) is a cause of regressive autism. As MMR was used in Japan only between 1989 and 1993, this time period affords a natural experiment to examine this hypothesis. Data on 904 patients with autism spectrum disorders (ASD) were analyzed. During the period of MMR usage no significant difference was found in the incidence of regression between MMR-vaccinated children and non-vaccinated children. Among the proportion and incidence of regression across the three MMR-program-related periods (before, during and after MMR usage), no significant difference was found between those who had received MMR and those who had not. Moreover, the incidence of regression did not change significantly across the three periods.
http://www.springerlink.com/content/aq0470t874jwm686/
Friday, March 30, 2007
Evidence of Harm - The Sequel
In recent years theories that autism increases have been caused by either the MMR vaccine itself or thimerosal, the mercury based vaccine preservative, once more widely used, has dominated much public discussion of autism - despite an almost total lack of support for the vaccine causes autism theories amongst the world scientific community. But the controversy generated by the Wakefield study and the David Kirby/Robert Kennedy Jr anti-mercury campaigns has had an impact - on famlies already stressed by the realities of their children's autism and on a decline, at least temporarily, in the numbers of persons getting their children vaccinated against serious, dangerous diseases. Evidence of harm? You bet. Not the kind Kirby and Company rant about on the Huffington post though.
http://www.news-medical.net/?id=22732
Study reveals impact of the MMR controversy on parents of children with autism
Medical Studies/Trials
Published: Thursday, 29-Mar-2007
Researchers have found that the MMR controversy caused parents of children with autism feelings of stress, guilt and frustration. Their study is published in Archives of Disease Childhood.
In the course of 10 focus group discussions across the UK between 2003 and 2005 involving 38 parents of children with autism, scientists from the Medical Research Council (MRC) discovered the effects of the uncertainty caused by the MMR controversy on these parents. Their aim was to assess how the parents had been affected and identify their specific needs to inform how these might be met in future debates around immunisation.
In 1998, Andrew Wakefield and his colleagues published an article in which they claimed to have found a link between the MMR vaccine and the onset of autistic spectrum disorder, although most of his co-authors subsequently disassociated themselves from the suggestion that there was a link between the vaccine and autism.
The controversy that followed affected parents' decision-making with regards to MMR vaccination. The Health Protection Agency's figures show immunisation rates across the UK population fell from 92% before the controversy, to 80% by 2003/04 (http://www.hpa.org.uk/infections/topics_az/vaccination/cover.htm). Vaccination rates have since started to increase again as parental confidence in the vaccine has begun to recover. However, until now no research had looked at the impact of the MMR controversy on the parents of children with autism.
Dr Shona Hilton and her colleagues at the MRC Social and Public Health Sciences Unit in Glasgow found that many parents of children with autism have come under great stress and pressure as a result of the scare.
Dr Hilton found that some have experienced agonising uncertainty as to whether the MMR vaccine may have provoked their child's or children's autism. Many have wondered whether they are to blame for their child's condition or felt they had "let their children down" by deciding to vaccinate. Even those who felt that their child's autism was not linked to the MMR vaccine, either because of family history or because they had avoided vaccination, had suffered as a result of the ambiguous advice they felt that they had received.
The discussions also showed that most parents found it extremely difficult to make subsequent decisions about further vaccination for their children with autism and later children. Many parents felt let down by health professionals and health visitors as well as GPs. This appeared to be a result of the lack of clarity and consistency in what they were told. It may also have been a result of the perceived lack of empathy with and understanding of the realities of caring for a child with autism.
Dr. Hilton said: "It is clear from a review of the literature that there has been a lack of follow-up of the impact of this health scare on those likely to be most directly affected - those living day in and day out with children with autism. These parents in particular have been under a huge amount of stress about the possible impact of their decision to vaccinate or not. Often, those they turned to for guidance and advice, their health visitors and GPs, were not able to provide them with the support they needed.
Dr Hilton added "we are planning to conduct further research into whether health professionals feel that they are well-enough equipped to deal with parents during such health controversies, and how they can be better-supported. We hope to be able to develop new information materials and to identify other support that health professionals need in the difficult task they face of communicating with parents at the height of any future health controversies."
http://www.mrc.ac.uk
Thursday, March 29, 2007
Pay Now or Pay Later - Canadian Senate Autism Funding Committee's Misnamed Report
If you read the title of the Standing Senate (Committee) on Social Affairs, Science and Technology Report of its Enquiry on Autism Funding you would think the Senators were well informed and got the message about the need to provide funding and support now for treatment and help for families with autistic family members. If you did though you would be wrong, dead wrong. The esteemed Senators bent over backwards not to offend a few anti-cure, anti-treatment crusaders and don't intrude on provincial jurisdiction politicians but did nothing to actually help families fighting for treatment, cure and care for their autistic loved ones. They actually took a backward step in one area when they regressed to the 1960's and recommended more study on the effectiveness of autism interventions. Thus the Canadian Senate now stands decades behind family services agencies in most Canadian provinces, state agencies in the US including New York, Maine and California, the Association for Science in Autism Treatment, even the experts called by the BC government in the Auton case who testified that ABA was the treatment of choice. Congratulations Senators your report is a colossal tribute to doing nothing.
Far from offering insights into the realities of autism across the autism spectrum the distinguished Senators listened to a small number of high functioning autistic persons who do not see autism as a disorder. The Senators bought into the argument of anti-treatment anti-cure autistic persons appearing before them and making argument and failed to even ask who speaks for the many autistic persons who can not speak for themselves?
Thanks for nothing Senators. Help like yours is no help at all to Canadian families seeking help for their children, a mission you passed on.
The Standing Senate Committee on Social Affairs, Science and Technology
Final Report on:
The Enquiry on the Funding for the Treatment of Autism
PAY NOW OR PAY LATER
Autism Families In Crisis
Chair : The Honourable Art Eggleton, P.C.
Deputy Chair : The Honourable Wilbert Joseph Keon
March 2007
TABLE OF CONTENTS. i
SUMMARY OF RECOMMENDATIONS. iii
ORDER OF REFERENCE.. v
SENATORS. vi
INTRODUCTION.. 1
PART I: AUTISM: A COMPLEX ISSUE WITH SEVERAL DIFFERING VIEWS. 3
A. Definition of Autism.. 3
B. Prevalence of Autism.. 4
C. Effectiveness of Interventions. 4
D. Need for Treatment 5
PART II: ISSUES OF CONCERN RAISED BY INDIVIDUALS WITH AUTISM, THEIR FAMILIES, ADVOCACY GROUPS AND RESEARCHERS. 7
A. Access to Autism Treatment 7
B. Wait Time for Assessment, Diagnosis and Treatment 8
C. Stresses on Families. 9
D. Insufficient Disability Supports. 9
E. Lack of Accurate Information on Autism and its Prevalence. 10
F. Need for Research. 11
PART III: ACTION NEEDED BY THE FEDERAL GOVERNMENT. 13
A. Mechanism for Funding Autism Therapy. 13
B. Public Awareness Campaign. 14
C. Knowledge Exchange Centre. 15
D. Research. 16
E. Human Resources Initiative. 16
F. Mechanism to Ensure the Future Financial Security of Autistic Children. 17
G. The Income Tax Act as a Means to Reduce the Financial Burden of ASD families. 18
H. Consulting with Autistic Individuals and Others. 19
I. Need for a National Autism Strategy. 19
CONCLUSION.. 21
APPENDIX 1 – LIST OF WITNESSES. I
SUMMARY OF RECOMMENDATIONS
Section
in Part III
RECOMMENDATIONS
PAGE
I
The federal government, in collaboration with the provinces and territories, establish a comprehensive National ASD Strategy;
19
All stakeholders, including individuals with autism, be consulted on the components that should be part of the Strategy, such as treatment, research, surveillance, awareness campaigns, community initiatives, education, respite care for families, etc.; and,
20
The Strategy include child, adolescent and adult treatments and supports.
20
A
The federal government convene a federal/provincial/territorial ministerial conference to examine innovative funding arrangements for the purpose of financing autism therapy;
14
The conference establish an appropriate level of funding by the federal government;
14
The conference identify measures of accountability in the use of federal funds for autism treatment;
14
The conference recommend listing of essential services for ASD; and,
14
The conference also define the feasibility of introducing measures such as supports for caregivers, including respite, family training and assistance, assisted living support as well as career and vocational training.
14
B
Health Canada, in consultation with autistic individuals and other stakeholders, implement a national public awareness campaign to enhance knowledge and understanding about ASD; and,
15
Health Canada use its dedicated webpage as one component of a public awareness campaign.
15
Section
in Part III
RECOMMENDATIONS
PAGE
C
The federal government provide funding for the creation of an Autism Knowledge Exchange Centre;
15
The Centre include an Internet-based web portal for access to reliable data and credible links for those seeking autism information;
15
The Centre be at arm’s length to government; and,
15
The Centre be mandated with the dissemination of best practices based on authoritative research and scientific consensus.
15
D
The federal government create an Autism Research Network and provide substantial new funding for this through CIHR; and,
16
The Autism Research Network work collaboratively with all stakeholders, including individuals with ASD, to develop a research agenda.
16
E
The federal government work collaboratively with the provinces and territories to address the human resource issues including training standards and inter-provincial mobility in the field of ASD.
17
F
The federal government, in implementing the recommendations of the Minister of Finance’s Expert Panel on Financial Security for Children with Severe Disabilities, ensure that autism qualifies as an eligible disability.
18
G
The Department of Finance and the Revenue Canada Agency study the implications of income splitting for ASD families and issue a report to the Minister of Finance by June 2008.
18
These departments issue the results of the tax measures review no later than 31 December 2007 and that these include a clear set of tax benefits for ASD individuals and their families.
18
H
Health Canada invite autistic individuals to attend the symposium and be given the opportunity to contribute as equal partners in an exchange with other participants and,
19
Health Canada ensure that the symposium is conducted with a clear set of goals and defined outcomes and is based on consensus building.
19
ORDER OF REFERENCE
Extract form the Journals of the Senate of Thursday, June 22, 2006:
Resuming debate on the inquiry of the Honourable Senator Munson calling the attention of the Senate to the issue of funding for the treatment of autism.
After debate,
The Honourable Senator Moore moved, seconded by the Honourable Senator Banks:
That the Inquiry on the issue of funding for the treatment of autism be referred to the Standing Senate Committee on Social Affairs, Science and Technology for study and report; and
That the Committee submit its final report no later than November 30, 2006.
The question being put on the motion, it was adopted.
________________
Extract from the Journals of the Senate of Monday, November 6, 2006.
The Honourable Senator Fraser moved, seconded by the Honourable Senator Cook:
That, notwithstanding the Order of the Senate adopted on Thursday, June 22, 2006, the Standing Senate Committee on Social Affairs, Science and Technology which was authorized to examine and report on the issue of funding for the treatment of autism, be empowered to extend the date of presenting its final report from November 30, 2006 to May 31, 2007.
After debate,
The question being put on the motion, it was adopted.
Paul C. Bélisle
Clerk of the Senate
SENATORS
The following Senators have participated in the study on the issue of funding for autism treatment of the Standing Senate Committee on Social Affairs, Science and Technology:
The Honourable Art Eggleton, P.C., Chair of the Committee
The Honourable Wilbert Joseph Keon, Deputy Chair of the Committee
The Honourable Senators:
Catherine S. Callbeck
Andrée Champagne
Ethel M. Cochrane
Joan Cook
Jane Mary Cordy
Joyce Fairbairn, P.C.
Jim Munson
Nancy Ruth
Lucie Pépin
Marilyn Trenholme Counsell
Ex-officio members of the Committee:
The Honourable Senators: Marjory LeBreton (or Gerald J. Comeau) and Céline Hervieux-Payette, P.C. (or Claudette Tardif)
Other Senators who have participated from time to time on this study:
The Honourable Senators: Gustafson, Mercer, Peterson, Rompkey, St-Germain and Watt.
PAY NOW OR PAY LATER:
AUTISM FAMILIES IN CRISIS[1]
INTRODUCTION
Families with autistic children in Canada are facing a crisis. When a child is diagnosed with autism and therapy is prescribed by a health professional, publicly funded health care insurance does not pay for the cost of the therapy. As a result, families must often pay out of their own pockets for a very large portion of expensive autism therapy – whose cost may reach $60,000 per year – because provincial and territorial jurisdictions offer only limited financial assistance. Families with autistic children across the country are therefore calling on the federal government to take a leadership role with respect to autism. As a matter of comparison, they point to the Combating Autism Act of 2006 in the United States which authorizes the federal government to spend $US 945 million over five years for autism research, screening, intervention and education.
Text Box: (…) if you pay for it now, look at the return you will get on your investment. The people with autism will get out in the real world and get jobs, and that will stimulate the economy. Or you can pay later, which means they will go into group homes and it will cost the taxpayers a lot of money in the long run to keep them there. Jason Oldford, Fredericton, New Brunswick (12:32)Autism is a complex, lifelong, developmental disability which is 3 to 4 times more prevalent among boys than girls. Children and adults with autism may find it hard to communicate with others and to relate to the outside world. Autism can result in severe problems in social interaction, communication, and behaviour. A generation ago, the vast majority of the people with autism were eventually placed in institutions, while many others were misdiagnosed. Today, however, the picture is brighter. There is evidence to suggest that some people who have autism can improve significantly with proper therapy. When provided with appropriate support, training and information, families can often ensure that their son or daughter can enjoy a good quality of life. Autism therapy, along with autism-specific programs and services, provide the opportunity for individuals to be taught skills, which allow them to reach their fullest potential and contribute positively to society. Many individuals with autism eventually become more responsive to others as they learn to understand the world around them. They can learn to function at home and in the community and to develop skills that will enable them to secure and retain employment. Families with autistic children and autistic individuals themselves insist that governments must pay now for autism therapy, services and supports in order to obtain the greatest return on investment. Otherwise, they will pay later in terms of much higher costs in future years for welfare, social services and institutional care.
It is not the first time that the Standing Senate Committee on Social Affairs, Science and Technology has heard about the challenges of autism. Between 2003 and 2006, during its study on mental health, mental illness and addiction, the Committee had an opportunity to hear and learn from persons living with autism, their families and experts. We were made aware that autism is an extraordinarily complex issue that is also very controversial. At the time, however, we heard from some that autism should not be considered as a mental illness and accordingly decided that a more thorough investigation was required before taking a public position. For this reason, when the Committee released Out of the Shadows at Last in May 2006, the report did not contain recommendations with respect to autism. Nonetheless, our report did state that we hoped to undertake a thematic study on autism.
Within this context, in June 2006, the Committee received a mandate from the Senate to undertake an inquiry and to report on the issue of funding for the treatment of autism and on the need for a national autism strategy. In response to this mandate, the Committee held nine meetings and heard from 53 witnesses including autistic individuals, parents of autistic children, advocacy groups, health professionals, autism researchers, and selected federal department representatives, as well as one provincial minister. Witnesses also had the opportunity to discuss the announcement made on 21 November 2006 by the Honourable Tony Clement, Minister of Health, regarding a set of federal initiatives related to autism, and to share their views on recent parliamentary business related to autism, including:
· Bill C-211. This bill, which was introduced on 6 April 2006 by Peter Stoffer, Member of Parliament from Sackville-Eastern Shore (Nova Scotia) and is at first reading, calls on the federal government to include autism therapy under the Canada Health Act to ensure uniform and equitable access for all children with autism.
· Bill C-304: This bill, which was tabled on 17 May 2006 by Shawn Murphy, Member of Parliament for Charlottetown (Prince Edward Island), but was defeated on 21 February 2007, proposed, like Bill C-211, to include autism therapy under the Canada Health Act. In addition, it required the Minister of Health to convene a conference of all provincial and territorial ministers of health for the purpose of working together to develop a national strategy for the treatment of autism.
· Motion M-172: This motion was introduced on 27 October 2006 by Andy Scott, Member of Parliament for Fredericton (New Brunswick) and adopted on 5 December 2006. The motion calls on the federal government to create a national autism strategy that would include: the development of evidence based standards for the diagnosis and treatment of autism; the implementation of innovative funding methods for the care of those with autism; the provision of additional federal funding for autism research; and, the implementation of a national surveillance program for autism.
In this report, the Committee summarizes the testimony heard during these hearings, highlights issues raised by witnesses and identifies action needed by the federal government in response to these issues.
PART I: AUTISM:
A COMPLEX ISSUE WITH SEVERAL DIFFERING VIEWS
The Committee heard many different points of view on the complex issue of autism. Contrasting views were presented with respect to the definition of autism, its prevalence, the effectiveness of various autism interventions, and the need for treatment. Sometimes, divergent opinions were highlighted among autistic individuals, advocacy groups and families. This makes it very difficult to achieve consensus and to identify potential options for policy considerations. For this reason, it is clear that any set of recommendations will not please everyone. At the same time however, this reinforces the call for a strong foundation of autism research and underscores the need for unbiased, accurate information through education, knowledge exchange and public awareness. This also suggests that consultations with all stakeholders including, perhaps most importantly, autistic individuals, are essential to policy decision-making.
A. Definition of Autism
The Committee was given two distinct definitions of autism. The first one, which was provided by numerous witnesses including researchers, health professionals, advocacy groups, parents and autistic individuals, refers to the Diagnostic and Statistical Manual of Mental Disorders, 4ed (DSM-IV). According to this definition, autism or “Autistic Disorder” is a mental illness and one of a group of five “Pervasive Developmental Disorders” (PDD). The other four include Asperger’s Syndrome, Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS), Rett’s Syndrome, and Childhood Disintegrative Disorder (CDD). The Committee was also told that, in practice, reference is often made to “Autism Spectrum Disorders” (ASD) which encompass Autistic Disorder, Asperger’s Syndrome, and PDD-NOS. It is interesting to note, however, that ASD is not a term that is officially defined in any international medical classification codes. The DSM‑IV indicates that individuals with these disorders exhibit qualitative impairment in social interaction; restricted repetitive and stereotyped patterns of behaviour, interests, and activities; and qualitative impairment in communication. Autism is described according to a spectrum with varying degrees of pervasive impairment that range from mild to severe.
The second definition presented to the Committee was provided by other autistic individuals and researchers in the field. In their view, autism (or ASD) is not a mental disorder; it is rather a neurological difference classified as a developmental disability that begins in early childhood and persists throughout adulthood. They explain that while autism may affect behaviours in three crucial areas of development – social interaction, communication, and restricted interests or repetitive behaviours – it also presents measurable and admirable differences in perception, attention, memory, intelligence, etc. In their view, autistic individuals have strengths and traits not seen in the general population, just like “non-autistics” have strengths and weaknesses of their own. Like non-autistic people, individuals with autism may suffer from mental health problems and illnesses, including for example depression, self-hate and suicidal ideation. Those mental health problems may be exacerbated by the lack of knowledge about and appreciation of autism among non-autistic individuals.
Text Box: (…) there is no universal guide to autism. There are countless different degrees of autism and different kinds of autism spectrum disorders. To truly get a universal understanding of autism, you would have to talk to thousands of individuals and families. (…) all Canadians with autism spectrums disorders are unique individuals with different strengths, skills, abilities and needs. Kristian Hooker, Selkirk, Manitoba (12:22)Despite these different definitions, the two groups acknowledge that no two individuals with autism are alike and that a wide range of approaches and interventions must be considered. In addition, they both acknowledge that no one knows the exact causes of ASD. The first group insists on the need for early and intensive behavioural intervention, while the second argues that autistic individuals should receive the assistance, accommodation, acceptance, and respect they need to succeed in society as autistic people. They all insist that treatment and support services must be provided throughout the lifespan of the individual.
B. Prevalence of Autism
Another area of contrasting opinion that arose during the Committee hearings relates to the prevalence of autism. Numerous witnesses suggested that there is an autism “epidemic”. Others argued that the increased prevalence is due to better identification of ASD and not to an increase in the actual incidence. The Committee heard that increased sensitivity to ASD, more accurate diagnoses as well as significant changes to diagnostic criteria may have contributed to the higher numbers.
It is unclear whether the actual prevalence of ASD is changing over time, but the number of diagnoses has been on the rise. Currently, the rate often cited for ASD in Canada is 6 per 1000, or 1 in 166 and is consistently detected 3 to 4 times more often in boys than in girls. This translates to about 48,000 autistic children aged 0 to 19 and 144,000 adults within Canada. Those who support the view of an increase in prevalence insisted that action must be taken now in providing publicly funded autism therapy, while others pointed to the need to invest more government funding into research to determine more adequately the prevalence and to assess the effectiveness of autism therapy.
C. Effectiveness of Interventions
Another area of disagreement which was also evident among the various advocacy groups/parents relates to the choice of autism interventions. Some witnesses argued that the only intervention options that should be made available to autistic children are Applied Behavioural Analysis (ABA) or Intensive Behavioural Intervention (IBI), while others favoured an integrated, multi-disciplinary approach, combining biomedical and nutritional treatments in addition to various forms of behavioural interventions. Still, others felt that there is no one approach that can be universally applied to all and that it should be left to the ASD professionals, in consultation with the family, to determine the best treatment option. The Committee heard that some treatment options have little, or no, scientific evidence of their efficacy and that some others have even been found harmful. Many witnesses, including some individuals with ASD, emphasized that funding should only be provided for treatments with a solid evidence-base. Again, this raises the question as to whether more funding should be devoted to research to improve knowledge about treatments and their effectiveness.
D. Need for Treatment
Text Box: (…) autistics should receive the assistance, accommodation, acceptance, and respect we need in order to succeed in society as autistic people. Michelle Dawson, Montréal Quebec, Brief to the Committee, p. 9.The Committee also heard differing opinions between autistic adults and the parents of autistic children with respect to the need for treatment. Parents want their children to receive intervention as soon as diagnosis is made, for as long and as intense as needed. Some autistic individuals, however, do not believe that early, intensive intervention is required. They explained that autism is not a degenerative condition and that, accordingly, autistic people do not inherently deteriorate or die in the absence of specific autism treatments. They also pointed out that many autistic individuals are able to learn and to communicate without intensive interventions. Moreover, they told the Committee that the nature of the treatment itself can deny or hamper particular abilities, strengths and traits of autistic individuals. Therefore, in establishing public policy, decisions about the nature and needs of autistic individuals should be made in consultation with autistic individuals and their families.
PART II:
ISSUES OF CONCERN RAISED BY
INDIVIDUALS WITH AUTISM, THEIR FAMILIES,
ADVOCACY GROUPS AND RESEARCHERS
A. Access to Autism Treatment
The Committee was told that access to autism treatment is problematic for different reasons. For one, ABA/IBI, the most intensive form of intervention, is very expensive and can cost parents as much as $60,000 per year if no public funding is provided. These interventions are not exclusively “health services” but include a wide range of psychological, social and educational services. In addition, there is the jurisdictional aspect to consider when discussing the funding and provision of services. Witnesses stressed that provinces and territories have jurisdiction over the provision of autism interventions (either through the health, education, social and community service sectors), but they noted that the federal government has more ability to finance them through its spending power.
Text Box: ABA is an expensive treatment. You have probably heard the figure $60,000 per year per child. It is derived from 52 weeks a year at 40 hours a week at $30 an hour. Parents put themselves on the verge of bankruptcy when they have to pay for that treatment out of pocket. I certainly understand the situation they are in. I am amazed they can cover the treatment they need for their child and still pay the bills. How they do it, I do not know. Somehow, they get it done. Jason Oldford, Fredericton, New Brunswick (12:28)Currently, all provinces and territories, with the exception of Nunavut, provide some funding for autism therapy, most notably for ABA/IBI. There is, however, no national program that would ensure uniform and equitable access to therapy by autistic individuals. As a result, autism therapy is funded under a variety of approaches and the number of hours of therapy allowed and the amount of funding provided per child vary greatly from one jurisdiction to another. Witnesses urged that equitable and uniform access to treatment should be made across the country regardless of the individual’s ability to pay.
Witnesses spoke of the need for flexibility in treatment options as different approaches are needed for different individuals. There was a strong consensus that all available treatment approaches should be monitored for effectiveness and that treatment regimens should be provided based on scientific evidence. It was suggested that some treatments that are currently offered for ASD do not meet the rigors for scientific validation. For this reason, they stressed the need for properly designed, randomized and controlled clinical trials to evaluate the spectrum of therapies. It was also indicated that the individuals themselves who are being treated should be regularly monitored for progress and that ineffective therapy either be stopped or redesigned. In any case, harmful therapies should be discredited or even prohibited.
Numerous witnesses noted that autism treatment requires the participation of a multidisciplinary team. For example, medical practitioners, psychologists, psychiatrists, speech-language pathologists, occupational therapists and special education providers all have a vital role to play in ASD therapy. For many witnesses, early intervention is critical, regardless of the approach taken for treatment. The Committee also heard that another consideration is access to these services in both English and French and that the shortage of trained professionals is even greater for the francophone community living outside the province of Quebec.
Witnesses noted that that the recent announcement by the Minister of Health is only a “very modest first step” as it does not include any initiative related to the funding of autism therapy. This is despite the fact that the burden associated with the cost of autism therapy is the most pressing issue facing families with autistic children. For many witnesses, only a federal funding program would allow access to universal, equitable and uniform treatment in Canada.
B. Wait Time for Assessment, Diagnosis and Treatment
The Committee was told that access to autism treatment is not only impeded by its high cost and a lack of public funding, but that it is also significantly affected in some areas within Canada by a shortage of professional service providers. Witnesses explained that, in turn, this shortage has produced waiting times for assessment and diagnosis as well as for treatment. The Committee was made aware of the common, but unacceptable, experience of parents being unable to access timely assessment and diagnosis of their children. Witnesses spoke of the frustration of waiting months, if not years, to obtain the ASD diagnosis, only to find the child was now too old to qualify for publicly funded treatment. Witnesses also spoke of the irony of placing children in the privately funded stream due to the long waits in the public queue, only to be turned down for public funding later as the treatment produced such advances in the child that they now no longer qualified.
Another factor associated with longer waiting times relates to the expansion of eligibility for autism therapy to an increasing number of children. For example, the Committee was told that when Ontario decided to continue public funding for IBI therapy beyond age six, waiting lists for IBI therapy in that province grew substantially. The Committee was told that in Alberta, despite parents obtaining direct public funding for therapy, children cannot access treatment because there is a shortage of service providers. It heard that in contrast, Ontario has invested in increasing service provider capacity and does not have a shortage at this time, but the provincial government currently lacks the money to fund the therapy. The Committee was told that there is a fear that those who received autism training in Ontario may be enticed to move to Alberta.
Therefore, in some jurisdictions, like Ontario, additional federal funds could help alleviate some of the wait for publicly funded treatment. In other jurisdictions, such as Alberta where there is a shortage of providers, adding more public funding would have no immediate impact. After all, additional funds for treatment will not be helpful if there is no one to provide the therapy. In this case, there must be sustained capacity-building to attract, train and retain specially trained professionals, such as, but not limited to, child psychologists, speech-language pathologists, occupational therapists and special educators. Witnesses saw a role for the federal government in such an endeavour in terms of developing appropriate guidelines and standards for professional training.
Witnesses also stressed that mainstream medical practitioners are often too busy and not adequately trained about autism or the available therapy options. They also talked about teachers and assistants who are not properly trained to accommodate autistic children. Where training is made available for educators, it is not mandatory. Witnesses suggested that care of some autistic children in the hands of untrained personnel may create a dangerous scenario.
C. Stresses on Families
The Committee heard from many parents and advocacy groups about the tremendous emotional stresses and financial challenges faced by families with autistic children. Witnesses spoke of the devastation for parents and siblings who struggle to find ways to best accommodate the special needs of an individual with ASD. The Committee was told that families must often adapt their whole lifestyle to the needs of their ASD child. Witnesses frequently reported that there needed to be one stay-at-home parent to provide the necessary comfort and consistency, not to mention added support and intervention. Moreover, it is often necessary to have extra help within the home or at school. The Committee was also told that in the course of hiring treatment providers, who often provide treatment in the home setting, parents suddenly discover that they have become employers and are essentially operating a clinic.
Some witnesses stated that families “are bleeding” and that help is needed right now, not just for autistic children, but for parents and siblings as well. Needed supports are varied and include such things as respite care and home-care aid.
D. Insufficient Disability Supports
The Committee was told that the federal government offers a variety of financial supports that are applicable to individuals with ASD or their parents. In 2004-2005, the federal government invested $7.6 billion in income support, tax measures and programs for people with disabilities. Income support is primarily available through the Canada Pension Plan Disability Benefits. As well, there are tax measures such as the Disability Tax Credit, the Medical Expense Tax Credit and the Child Disability Benefit. In the 2006 budget, the government increased the annual Child Disability Benefit from $2,044 to $2,300 and the medical expense supplement was increased to $1,000 from $767. In addition, the Committee was told that additional federal funding for disability supports and services is provided under the Canada Health Transfer and the Canada Social Transfer. However, numerous witnesses shared the view that this support is insufficient given the diverse and substantial needs they have, and that ASD is not always eligible for tax credits or deductions intended for disability or medical expenses.
E. Lack of Accurate Information on Autism and its Prevalence
Text Box: A big problem with people facing ASD in society is that others often have a stereotype of how a person with ASD is supposed to look or behave. Many people with ASD could eliminate that stereotype but rarely get that opportunity, especially with a large group of people. The one thing that people should realize about people with ASD is that we are really no different from anyone else. We may have traits or abilities that seem unique or different but so does everyone else. Kristian Hooker, Selkirk, Manitoba (12:24)Several witnesses told the Committee that many Canadians do not understand what autism is; this makes it difficult for them to know how to interact with and accommodate autistic individuals and their families. An awareness campaign was suggested in order to enhance the public understanding of autism. Lack of understanding may also extend to professionals who would benefit from ongoing education to ensure that children are not mislabelled and improperly assessed. Minister Clement recently announced that Health Canada will create a dedicated page on its website to guide the public to ASD information available through the Canadian Health Network and other resources. Given the contrasting views and opinions about ASD and autism therapy, it will be crucial for the department to consult all interested parties to ensure that ASD information is presented in an unbiased fashion.
Text Box: Generally speaking, autism-related sites lag way behind what is really happening. They contain a lot of obsolete information, which but adds to the confusion of parents and adults. Adults come to us, at the association, with all kinds of explanations that simply do not hold water. This is due to the fact that the information posted on sites is not updated. Brigitte Harrisson, Quebec (12:35)Text Box: The first requirement of any website on autism should be that a person be in charge of keeping it up to date. Given the speed with which knowledge is moving forward in this day and age, this is a must. It is essential to take every precaution before disseminating information. Sources must be verified, in order to avoid having statements such as autism is a mental illness or some other qualifier such as that which I heard earlier and which I will attempt to forget. It is important that all sources be verified. I could never repeat this often enough: It is essential to go through autistic people themselves and not just those surrounding them, observing them and basing their reactions on their fears. Brigitte Harrisson, Quebec (12:35-36)Witnesses also signalled the poor data on prevalence. They suggested that there are inadequate surveillance systems to obtain the required data. They discussed the National Epidemiological Database for the Study of Autism in Canada (NEDSAC), which aims to determine whether the prevalence is increasing. This project conducts surveys only within various regions of Canada however, and therefore cannot be expected to supply comprehensive surveillance data. Minister Clement informed the Committee that his recent announcement includes the launch of a consultation process on the feasibility of developing an ASD surveillance program through the Public Health Agency of Canada. This was also suggested in Motion 172 by Andy Scott, M.P. Witnesses welcomed this initiative.
Numerous witnesses complained that there is currently no dedicated, central source of information on autism and autism therapy. A vast body of information exists but it is not being made readily available in terms that are clear and concise that the general public can appreciate. Witnesses frequently stated that the parents of autistic children are forced to navigate through a very complex web of information with little help. They suggested that there is an abundance of inaccurate information as well as considerable accurate information with no way for individuals to distinguish between them. This can be particularly harmful since families impacted by autism are willing to soak up any and all information they can find. As such, they emphasized that there is a need for a centralized, unbiased and credible source for information, a need for knowledge exchange and for effective communication of research findings.
F. Need for Research
Research has a vital role to play in the provision of reliable information. According to the Canadian Institutes of Health Research (CIHR), funding for autism-specific research has increased from just over $1 million in 2000-2001, to $3.5 million 2005-2006. In total, CIHR invested some $15 million during this period. The Committee also heard that Genome Canada, the Canadian Foundation for Innovation and Health Canada invest federal funds into autism research. Witnesses commented on the excellence of the Canadian autism research community, highlighting the collaborative spirit and collegiality. They insisted, however, that additional resources are necessary so that promising theories and hypotheses can be tested. It was also explained that autism research is not an area that lends itself to industry investment and that private donations to charitable organizations that fund research, though generous and vital, are not sufficiently stable from one year to the next. For these reasons, witnesses suggested that funding by the federal government in a substantial and on-going manner is imperative.
The Committee heard of promising programs such as that funded jointly by the CIHR, the National Alliance for Autism Research (now called Autism Speaks) and the Fonds de recherche en santé du Québec which will train the next generation of autism researchers. Despite this promising initiative, witnesses stressed that much more is needed in the way of training more researchers as well as promoting a multidisciplinary approach to research.
The announcement by Minister Clement, in contrast to Motion 172 which calls for additional federal funding on autism research, only includes the possibility of establishing a new research chair focusing on effective treatment and intervention for ASD. The research community welcomed this government decision but, much like the advocacy groups, they insisted on the need for additional autism research funding for areas such as the incidence, causes, effective screening tools, and treatment development including psychopharmacological and psychosocial interventions. Witnesses stressed the importance of distinguishing between short-, medium- and long-term needs when establishing research priorities.
PART III:
ACTION NEEDED BY THE FEDERAL GOVERNMENT
the Committee is encouraged by recent steps taken by the federal government to address autism concerns. However, it also heard the frustration expressed by many witnesses that both the recent announcement of Minister Clement and the private motion (M-172) by Andy Scott, M.P., regarding the creation of a National Autism Strategy do not commit to specific actions. The Committee wants to recommend a number of urgent initiatives that the federal government should implement over the next two years in response to the challenges faced by ASD individuals and their families. These initiatives will reduce the stresses for those affected by ASD as well as increase our knowledge base for this developmental disability.
A. Mechanism for Funding Autism Therapy
Text Box: If the federal government truly became the leader, while still intending to transfer the program to the provinces later on, it would be worthwhile for it to set the example and to keep autistic people involved in the treatment protocols. Allow me to repeat myself: It is really important that those autistic persons who are autonomous, who are capable of helping, do so. The need is an urgent one. This is what we are seeing. Therefore, if you are able to launch something, if you set the tone, then the provinces will obviously be able to jump on board afterwards. Brigitte Harrisson, Quebec (12:20)The Committee’s primary focus was federal funding for autism treatment. Many witnesses stressed the urgent need to immediately provide extra financial resources for families who insist they need to access very costly ASD therapy. Some suggested that the government in fact had a moral obligation to do so.
The provision of health care, education and social services, including those relevant to ASD, are provincial/territorial responsibilities with federal funds being provided for these in the forms of the Canada Health Transfer and the Canada Social Transfer. Although federal funds make up a substantial portion of the budgets in these areas, the provinces and territories have the sole authority to decide how the money is spent. Numerous witnesses supported the private member bills C-211 (Peter Stoffer, M.P.) and C-304 (Shawn Murphy, M.P.) and suggested that ABA/IBI should be included as medically necessary services under the Canada Health Act in order to ensure universal and free access to autism therapy across the country. However, the Committee recognizes that the Act is not an appropriate mechanism to ensure federal funding for ABA and IBI therapies. The reality is that the Act does not refer to any specific disease, condition or treatment. Moreover, the medically necessary services defined under the Canada Health Act are those provided by physicians or other health care practitioners either in hospitals or doctors’ offices, which is not the case for autism therapy.
The Committee considered other funding mechanisms to assist the provinces and territories in financing autism treatment. The proposed catastrophic prescription drug insurance program, recommended by this Committee in October 2002 in its report entitled The Health of Canadians – The Federal Role, Volume 6: Recommendations for Reform, which aims to ensure that families do not suffer undue financial hardship for required drug therapy provides one model. Families with autistic children, because of the extremely high cost of ABA/IBI therapies, could benefit from a similar program that provides financial assistance when costs exceed a pre-determined proportion of the family income. Witnesses, however, did not comment on the potential benefits of such a proposal.
Therefore, the pressures and challenges experienced by families coping with the demands of caring for a child or children with ASD result in considerable stress. The Committee believes that the financial burden on these families and caregivers is excessive and a solution must be found.
Text Box: In developing a funding policy for autism, it is important that adults are an integral part of the equation and that more able is not translated to mean less needy of supports and services. Children with autism grow up to be adults with autism. Daniel Hatton, Hamilton, Ontario Brief to the Committee, p. 1.Another issue that was raised during the hearings was the need for additional supports such as supports for caregivers, including respite, family training and assistance, and assisted living support. There is a need to study the feasibility of introducing such measures. Witnesses also underscored that the needs of autistic adults must be taken into consideration when it comes to education, vocational training and employment (currently done by Social Development Canada with Opportunities Fund for People with Disabilities).
Witnesses suggested that concerns over funding arrangements could be initially addressed at a federal/provincial/territorial ministerial conference. This was suggested under the private motion by Andy Scott that was recently passed. This motion also states that innovative funding methods should be developed. The need for a federal/provincial/territorial ministerial conference is also acknowledged in Shawn Murphy’s private member bill C-304. Therefore, the Committee finds that it is urgent that the federal government assume a leadership role and recommends that:
The federal government convene a federal/provincial/territorial ministerial conference to examine innovative funding arrangements for the purpose of financing autism therapy;
The conference establish an appropriate level of funding by the federal government;
The conference identify measures of accountability in the use of federal funds for autism treatment;
The conference recommend listing of essential services for ASD; and,
The conference also define the feasibility of introducing measures such as supports for caregivers, including respite, family training and assistance, assisted living support as well as career and vocational training.
B. Public Awareness Campaign
Throughout the course of the hearings on this difficult subject, witnesses identified a clear need for a national public awareness campaign. The Committee agrees that there is a general lack of understanding among Canadians about autism and its spectrum of disabilities and feels that a greater understanding of ASD by all Canadians could help to reduce the stress experienced by these individuals and their families. The general population should be made aware of the associated early signs and symptoms in order that parents might pursue assessment of their child at the youngest possible age. Such a campaign could also serve as a tool to promote the Knowledge Exchange Centre (discussed below). The Committee therefore recommends that:
Health Canada, in consultation with autistic individuals and other stakeholders, implement a national public awareness campaign to enhance knowledge and understanding about ASD; and,
Health Canada use its dedicated webpage as one component of a public awareness campaign.
C. Knowledge Exchange Centre
There was a consensus among witnesses about the need to consolidate areas of education, clinical expertise and research endeavours to enhance and facilitate collaborative efforts. The Committee sees a need for a clearinghouse of “best practices” (including international experiences) which would allow each province or territory to develop or enhance its own services. It would also serve as the means to provide families with an unbiased source of accurate information including current research findings. Families affected by ASD are already under considerable stress and the Committee asserts that it is unfair to make them spend their precious resources and what little time they have wondering what to do, where to go for help, what help to get, whom to trust and whom to believe. A focal point for ASD information, provided by a trusted source, would save individuals from navigating the current confusing and unreliable maze and could sort out the accurate from inaccurate information.
As a corollary, there is a need to provide the centralized infrastructure for the dissemination of information that is helpful, accurate and supportive and to put scientific findings into plain language. The Committee heard that the university setting might be most appropriate as it is often viewed as unbiased and trustworthy.
Thus, the Committee recommends that:
The federal government provide funding for the creation of an Autism Knowledge Exchange Centre;
The Centre include an Internet-based web portal for access to reliable data and credible links for those seeking autism information;
The Centre be at arm’s length to government; and,
The Centre be mandated with the dissemination of best practices based on authoritative research and scientific consensus.
D. Research
The Committee sees a need for a significant investment in research into autism. Although there has been considerable work in the research community there are still many areas that need to be more fully explored. The Committee believes that there is a clear role for the government to fund research that will explore the causes of autism, develop treatment models, establish new treatment methods, determine treatment suitability, refine treatment approaches for older children and adults and develop appropriate evaluation tools so that treatment effectiveness can be properly measured.
The Committee is aware that CIHR is prepared to take the lead in a federal autism research program and work with all partners and stakeholders in order to define the priorities. It is important for CIHR to work inclusively with such partners as the Autism Society Canada, Autism Speaks and the Canadian Autism Intervention Research Network to develop a comprehensive research agenda. The development of this agenda should: include multidisciplinary research teams; encourage more programs that train autism researchers; provide the long-term, randomized, controlled trials required to properly measure treatment effectiveness; facilitate collaboration; and, include public policy research. Moreover, CIHR must also consult with autistic individuals in identifying priorities.
As such, the Committee recommends that:
The federal government create an Autism Research Network and provide substantial new funding for this through CIHR; and,
The Autism Research Network work collaboratively with all stakeholders, including individuals with ASD, to develop a research agenda.
E. Human Resources Initiative
The Committee heard repeatedly that shortages exist across Canada in various specialty fields. In addition, witnesses indicated that teachers and medical practitioners should be better trained to spot signs and symptoms of ASD in order that an assessment can be ordered in a timely fashion. Witnesses contended that the need for a multi-disciplinary approach to autism assessment, diagnosis, treatment, training, education and research cannot be overstated. Some suggested that the multi-disciplinary teams should be supervised by a regulated health care professional. Others indicated that more of the professional groups involved should be certified by a regulatory body. Further, the Committee heard that more must be done to increase enrolment for the training of all relevant social services and education professionals (including supports for special training for teachers/aides, life skills programs, mental health services professionals), to encourage recruitment, and to optimize retention of these individuals, including perhaps improved remuneration.
The shortage of human resources is of paramount concern in the context of extending autism therapy. Some witnesses spoke of the need to establish a national training centre for autism therapy. Although it is not an area that lends itself easily to federal intervention, the Committee understands that this needs to be resolved before additional funds for treatment would be optimally beneficial.
While respecting the jurisdictional constraints in this area, the Committee recommends that:
The federal government work collaboratively with the provinces and territories to address the human resource issues including training standards and inter-provincial mobility in the field of ASD.
F. Mechanism to Ensure the Future Financial Security of Autistic Children
Although the main focus of the Committee’s study was on today’s needs of autism families, parents also expressed their concern about the future of their autistic children when they will no longer be there to care for them. The issue regarding the future financial security of children with severe disabilities was addressed in a recent report commissioned by the Minister of Finance. The report, entitled A New Beginning, recommended one new fiscal measure under the Income Tax Act – the Registered Disability Savings Plan – and two related new legislated programs – the Disability Savings Grant and the Canada Disability Bond Program. The Registered Disability Savings Plan would be modelled after the current Registered Education Savings Plan and would involve no restrictions on who could contribute to the plan (families, friends and strangers); it would have a lifetime contribution limit of $200,000. The Disability Savings Grants would be modelled after the existing Canada Education Savings Grant. It would be equivalent to 20% of the annual amount contributed to the Registered Disability Savings Plan, for the first $2,000 per year of contributions. Finally, the Canada Disability Bond would be broadly modelled after the Canada Learning Bond provisions currently in effect; it would provide low income families with at least $1,000 per year for the first 20 years of the registration under the Registered Disability Savings Plan.
Parents of autistic children welcome these three measures. They explained that other family members and friends often provide financial assistance to pay for autism therapy and that making them eligible as contributors under the Registered Disability Savings Plan was a sound recommendation. Some witnesses expressed concern about the lifetime contribution limit set at $200,000 and recommended that this ceiling be removed. However, Mr. James Barton Love, Chair of the Expert Panel, explained that this limit had been recommended to ensure that contributors would not benefit from excessive income referral. Another issue related to the treatment of the contributions under the Registered Disability Savings Plan by provincial social assistance plans. It was explained these contributions could disqualify a person with disabilities from receiving provincial benefits or could reduce the payments to be made under social assistance programs. To address this concern, it is essential that federal and provincial negotiations be initiated with a view to having contributions under the Registered Disability Savings Plan entirely exempted from the asset test in provincial social assistance programs.
The Committee welcomes the recommendations of the Expert Panel and is pleased that the government accepted them and announced the Registered Disability Savings Plan in Budget 2007. It supports the federal government in this attempt to enable parents to set aside funds today to financially support children with disabilities when they are no longer able to provide support. Moreover, the Committee feels that the report of the Expert Panel responds particularly well to the concerns of parents about the future of their autistic children. Therefore, the Committee recommends that:
The federal government, in implementing the recommendations of the Minister of Finance’s Expert Panel on Financial Security for Children with Severe Disabilities, ensure that autism qualifies as an eligible disability.
G. The Income Tax Act as a Means to Reduce the Financial Burden of ASD families
Another option that was explored during our autism study included tax breaks to families with autistic children. The Committee acknowledges that the federal government does currently offer tax credits or deductions to benefit those affected by ASD, such as the Disability Tax Credit and the Medical Expense Tax Credit. Although Committee members heard little testimony as to the extent that these tax credits are available to ASD families, they did hear that the tax treatment of expenditures related to autism under the federal Income Tax Act does little in alleviating the enormous financial burden faced by families due to the cost of autism therapy. This is particularly true for those with low or no taxable income.
In addition, the Committee heard repeatedly during its hearings that ASD families often have a single income earner because the second parent must stay home to care for the affected child or children. Frequently, the earning parent must also take on a second job in order to pay the high cost of ASD care and treatment. Witnesses explained that this results in pushing the income earner into a higher tax bracket, reducing the effect of the medical expense tax credit. The Committee heard that income splitting would be one way of assisting these struggling families. Therefore, the Committee recommends that:
The Department of Finance and the Revenue Canada Agency study the implications of income splitting for ASD families and issue a report to the Minister of Finance by June 2008.
The Committee also heard about current restrictions that prevent the roll over of RRSPs and RRIFs of family members into absolute discretionary trusts for individuals with ASD. These trusts are designed to protect the assets of the individual as well as their disability benefits and entitlements. Members feel strongly that any tax, or other financial relief, that is created for persons with ASD and their families, should not have a negative impact on their disability benefits and entitlements. This position was taken, in the context of all persons living with disabilities, in the report Disability Tax Fairness. This report was submitted to the Ministers of Finance and National Revenue in December 2004 by the Technical Advisory Committee on Tax Measures for Persons with Disabilities. The Committee applauds the government for having implemented all of the policy recommendations made in this report, but we are concerned that no action has yet been taken with respect to allowing an RRSP or RRIF roll over into a discretionary trust for a disabled person. The government indicated in early 2005 that it would “conduct a review of the tax rules in this area with a view to providing more flexibility where appropriate”. This review is still on-going.
Therefore, the Committee also recommends that:
These departments issue the results of the tax measures review no later than 31 December 2007 and that these include a clear set of tax benefits for ASD individuals and their families.
H. Consulting with Autistic Individuals and Others
The Committee appreciates that the complexity of this issue cannot be efficiently and effectively resolved without extensive consultation with all stakeholders. The diversity of opinions about the nature of autism, its prevalence, the effectiveness of treatments and interventions, etc., requires considerable consensus building in order to identify priorities and achieve common goals. Consensus building can be achieved only through ongoing consultations with all interested parties. In particular, the perspective of autistic individuals needs to be included.
Text Box: At that national symposium I would like nothing better than to see people with autism being invited to speak. Jason Oldford, Fredericton, New Brunswick (12:33)In his announcement, the Minister of Health stated that Health Canada will sponsor an ASD stakeholder symposium in 2007 to “encourage the development and sharing of ASD knowledge among health care professionals, researchers, community groups, teachers, individuals and families.” The Committee welcomes this announcement, however would like to reiterate the need for input from all stakeholders, including autistic Canadians. We insist that this symposium must take place sooner rather than later.
Therefore, the Committee supports the symposium announced by the government and recommends that:
Health Canada invite autistic individuals to attend the symposium and be given the opportunity to contribute as equal partners in an exchange with other participants and,
Health Canada ensure that the symposium is conducted with a clear set of goals and defined outcomes and is based on consensus building.
I. Need for a National Autism Strategy
Finally, and most importantly, the Committee wants to see the recommendations described above implemented as part of a National Autism Strategy. Autism is a very complex issue and it is extremely difficult to efficiently and completely address all of the parameters involved. Members of the Committee agree that the solution does not exist in a tidy policy package and that whatever approach is taken should be done within a forum that has a clear authority to effect change and that avoids inter-departmental and inter-governmental “turf-wars.” No matter how a National Autism Strategy is structured, witnesses were clear that individuals with ASD must be included in the consultation and play a role within the Strategy itself, that it receive adequate ongoing funding, that it span the lifetime of affected individuals and that it strive to achieve consistency across the country in terms of information dissemination, assessment, treatments and supports. Therefore, the Committee recommends that:
The federal government, in collaboration with the provinces and territories, establish a comprehensive National ASD Strategy;
All stakeholders, including individuals with autism, be consulted on the components that should be part of the Strategy, such as treatment, research, surveillance, awareness campaigns, community initiatives, education, respite care for families, etc.; and,
The Strategy include child, adolescent and adult treatments and supports.
CONCLUSION
Members of the Standing Senate Committee on Social Affairs, Science and Technology are profoundly aware of the challenges facing those with autism and their families. We are encouraged by recent events such as the motion in Parliament to explore autism treatment funding, the government’s announcement regarding autism initiatives, and the establishment of the Mental Health Commission in Budget 2007. However, all members agree that the federal government must act now to assist these Canadians. The Committee fully supports the view expressed by families with autistic children and autistic individuals themselves that governments must pay now; otherwise, they will pay later. We believe that the latter is simply not an option.
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