2 Harmful Acts: Autism Hate Letter And CHEO Removing Autistic Child With GDD From Early Intervention Program

The notorious autism hate letter that targeted an Ontario family and their autistic child has sparked horror and outrage around the world.  As the father of a 17 year old son with severe autistic disorder, profound developmental delays and tonic-clonic (grand mal) seizures I recoiled when I heard the news of this hateful act and I believe I have some understanding of  how the family felt and hope they are handling it as well as possible.  I suspect that the person or persons responsible for this act are now fearful that they may become publicly identified. Why the person felt it necessary to commit such an act is a mystery to me. I am happy to see that people around the world have responded with condemnation of the letter.

At the same time I am disappointed with the lack of reaction to the decision by the Children's Hospital of Eastern Ontario to write off an autistic child with "global developmental delay" by removing him from an early intervention program.  Call it what you want, justify it as you please, but the decision of the CHEO will have a real impact on the child with severe challenges by removing him at a critically important point in his life from the only solidly evidence based intervention for persons with autism and intellectual disability, "global" or not.  

Many have speculated about the mental health status of the author of the notorious autism hate letter. The harmful CHEO decision though was made by people whose mental health status is not in doubt, people who know what harm they have done to a child very much in need of their help, people who obviously lack compassion and concern for the well being of the autistic child with "global developmental delay" that they do not want darkening the "outcomes" profile, or assessments,  of the services they offer. 

A hate letter and a refusal to help.  Both are harmful. Neither can be justified.

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Thank You Again Shawn Graham For Helping NB Children With Autism

In the pictures above Shawn Graham makes a financial commitment to helping NB's autistic children and signs the cast of then Autism Society New Brunswick President Lila Barry.  In the bottom picture he and former Fredericton MP Andy Scott, also a strong advocate for autistic children,  participated in the grand opening of the Autism Connections Fredericton Community Center. 

Walking across the intersection at the corner of King and Carleton Street in Fredericton today I saw former New Brunswick Premier Shawn Graham coming from the opposite direction. I was very happy to see him and took advantage of the opportunity to shake his hand and thank him in person for the outstanding contributions he made to the lives of children with autism disorders in New Brunswick. I have thanked him publicly in the media and on this blog site but I appreciated the opportunity to thank him face to face.  

Shawn Graham built on the autism programs started during the Bernard Lord government in provision of quality autism early intervention.  He expanded significantly the number of education assistants and resource teachers with autism training at the UNB-CEL Autism Intervention Training program.  

It was a high point of my day to be able to say thank you in person to Shawn Graham on behalf of my son Conor and the other many children with autism disorders in New Brunswick who enjoy quality early intervention and accommodation of their challenges in achieving meaningful access to an evidence based approach to inclusive education. 

Thank you again Mr. Graham!

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Medicare's Orphans: Autism and Civil Rights Activist David Marley and The Fight For a National Autism Strategy

Medicare for Autism Now! has released episode 10 of our "Medicare's Orphans" web-series. This episode features Medicare for Autism Now, Civil Rights Now and co-producer of "Medicare's Orphans", David Marley. David is a former trial lawyer and long-time political activist. In this 25 minute interview, he discusses why it is crucial for Canadians, particularly parents and families of autistic children to become politically engaged.

As a parent I have advocated, together with other parents, for over a decade for a real National Autism  Strategy. Here in New Brunswick our advocacy involved working with former Fredericton MP Andy Scott over a decade ago for development of a National Autism Strategy which resulted in a strong commitment by Andy as reported by Tali Folkins in the Telegraph Journal on October 20, 2003:

"Fredericton MP Andy Scott said Saturday he has been lobbying prime- minister-to-be Paul Martin for a federal program to help young children with autism. "I desperately want a national autism strategy - and let me just assure you that Paul Martin knows it," Mr. Scott told supporters at a party celebrating his 10th anniversary as an MP in Fredericton Saturday evening.

Early work by therapists with young autistic children, Mr. Scott said, can make a big difference in their capacity to lead fulfilling lives as adults - and can save money in the long run. But the costs of starting such early intervention programs are high and should be borne directly by Ottawa rather than each individual province, he said. "We have responses and therapies and so on that I genuinely believe can work," he said. "You're going to save millions of dollars over the lifetime of an autistic adult. If you can get in at the front end, you can make enormous progress.

"But it's very expensive, and there's not a lot of stuff being added to Medicare, generally - that's why we have catastrophic drug problems and other things," he said. "In the province of New Brunswick, P.E.I., or even Quebec or Ontario it's very, very expensive. The feds are going to have to step up to the plate." "

As reported on Facing Autism several times Andy Scott, with NDP MP Peter Stoffer, and other MP's, was ultimately successful in getting a National Autism Strategy motion passed in the House of Commons. That effort was important in obtaining recognition of the need for a national autism strategy but it did not provide what parents of autistic children were fighting for from BC to Nova Scotia: a federal commitment to provide Medicare funding for ABA which to date remains the only evidence based effective intervention for autism.

The federal government has done nothing, absolutely nothing, to address the real needs of autistic children, school kids with autism or adults with autism needing assistance in the workplace or needing residential care. The federal government has done nothing to help those adults with severe autism who need 24/7 residential care and treatment. The federal government has stayed outside the battle content to hide behind constitutional jurisdiction line while ignoring the challenges faced by autistic Canadians and their families.

The fight for a real National Autism Strategy, one that includes medicare coverage for autism treatment has been long and difficult. I have met David Marley on several occasions, and very much appreciate having David with his his commitment and determination in our corner.  The fight for a real National Autism Strategy, a strategy built on inclusion of evidence based ABA treatment for children with autism disorders in our national Medicare has not been easy.  It is not easy now and will not be easy in the future.  We need everyone to pull together and fight.  

The current government, despite having within its ranks Alberta MP Mike Lake, father of an autistic son, is ideologically opposed to taking positive steps to ensuring that all children with autism, not just those living in Alberta, receive treatment under Medicare.

The Toronto Star reports that children in Ontario wait up to 4 years for therapy: The Autism Project: Children face up to four-year wait for therapy.  The significance of a 4 year wait is that children in Ontario are not receiving treatment during the critically important early years of 2-5.  In Ontario, early intervention for autism is largely non existent. The most effective treatment for autism is not generally available in Ontario.

Canada's 1 in 88 autistic children are, for the most part, doomed to move through the critical early years without the medical intervention they need.  The fight for medicare coverage for autism must continue and we need strong leadership, strong advocates.  David Marley has been answering the bell in this fight for many years.  Join David Marley and the Medicare for Autism Now! team, join the political fight to help Canadians with autism disorder receive the effective, evidence based autism treatment.  

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Fredericton Autism Intervention Services Founder Danielle Pelletier Honored Saturday Night

L: Danielle Pelletier, R: Harold Doherty

In the photo above I am standing with Danielle Pelletier, an SLP and founder of Autism Intervention Services Fredericton.  I was privileged to be in attendance and to have the opportunity to speak with Danielle who was honored Saturday night for her service to autistic children in the greater Fredericton area over approximately two decades.  She began her work as an SLP  working with autistic children at the Stan Cassidy Centre.  Danielle also provided moral support and professional credibility to a group of parent autism advocates known as FACE (Family Autism Centre for Education). FACE was the most active organization advocating for government funded evidence based early intervention services for autistic children.  Ultimately our provincial government did seek organizations to provide the early intervention services for autistic children.  Danielle answered the call in Fredericton where, six years ago,  she founded the Autism Intervention Services Fredericton Agency (1666 Lincoln Rd, Fredericton, NB) where she and her team have been providing evidence based ABA and Speech Language therapy for autistic preschoolers.  Danielle and her team have helped many autistic preschool children in Fredericton over the past 6 years and she absolutely deserves the honor and the standing ovation she received Saturday evening.  

Thank you Danielle for your outstanding contribution to the lives of autistic children in our community. 

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Helping The Victims Of Autism: Honest Autism Reporting By The Melbourne Herald Sun

In Helping the victims of autism the Melbourne Herald Sun speaks honestly about the realities of autism in Australia. This is not a CBC style promotion of "joy of autism" nonsense that Canada's public broadcaster pushes incessantly. The Herald Sun article reports honestly on uncomfortable truths, the kinds of truths that parents of severely autistic children are all too familiar with:

Much about autism remains a mystery, but a few facts are indisputable: of the 285,000 kids born in Australia this year, about one in 160 - not much short of 2000 of them - will be on the autism spectrum.

And the number is rising significantly.

Some will be so disabled, and needing constant care, that normal life for them, their parents and siblings will be out of the question.

Others may suffer Asperger's Syndrome and be socially clumsy, but will lead independent lives.

The Herald Sun article is not all gloom and doom. There is hope for autism through treatment. The article features the Raymond family and their 4 year old son, Brandon, who has autism and has benefited from early intervention at the Learning for Life Autism Centre:

The centre runs early intervention programs for autistic children, intensive one-on-one sessions that help the kids work on simple tasks.

"It's intensive work - puzzles, drawing building blocks, things tat other kids do naturally by observing each other, where as Brandon has to be taught, step by step.

"I now feel like Brandon is part of my world.

``He not off doing his own little thing on his own little planet - he spends more time in our world, doing things with us. Learning For Life has changed our lives."

Thumbs up to the Melbourne Herald Sun for honest reporting on some of the challenges presented by autism disorders and what can be done to address those challenges.

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Real Autism Advocacy - In Virginia Delegates Marshall and Poisson Push for Autism Health Insurance Coverage

In Here's why Virginia should mandate coverage for autism Delegates Rob Marshall (R-Manassas) and David Poisson (D-Sterling) argue for mandated health insurance coverage for autism by passage of H.B. 1588 in the Virginia General Assembly.



HB1588: Autism spectrum disorder; mandated health insurance coverage therefor was introduced in the Virginia General Assembly by Mr. Marshall on September 24, 2008 and requires health insurers, health care subscription plans, and health maintenance organizations to provide coverage for the diagnosis and treatment of autism spectrum disorder in individuals under age 21. Coverage is subject to an annual maximum benefit of $36,000. Anyone interested in following the progress of the bill can do so on the excellent Richmond Sunlight site.

Delegates Marshall and Poisson point out that, in addition to the gains for autistic children, early intervention in treating autism is an effective cost saving measure and that it alleviates the burden on on schools in their efforts to educate autistic children. The health insurance autism mandate is required to ensure that early intervention is provided to autistic children in Virginia. The legislation would provide for coverage of evidence-based, medically necessary care prescribed, provided or ordered by a physician or psychologist for a child under the age of 21.

Autistic children, and their families, in Virginia have two strong champions in Delegates Rob Marshall and David Poisson.

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Australian Autism Advocate Nominated for Local Hero Award

The Wynnum Herald reports that Dr. James Morton, a clinical haematologist at South Brisbane’s Mater Hospital, has been nominated for a Local Hero Award for his work as an autism advocate. Dr. Morton helped create a leading treatment program in Australia for autistic children, the Autism Early Intervention Outcomes Unit (AEIOU) after his autistic son's early intervention program closed a year after his autism diagnosis at age 2.

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Nova Scotia Refuses To Help All Autistic Children

Despite calls for expansion of its successful autism early intervention program the government of Nova Scotia is refusing to expand the program to help those autistic children who are excluded from treatment under Nova Scotia's immoral lottery system for assigning spaces in the program. When asked by Liberal MLA Greg Gavine "Why isn’t the government committing this money to help families like Jim Young and their children coping with autism?" Health Minister Chris d’Entremont responded that that there’s lots of competition for money.

Apparently NS Health Minister d'Entremeont subscribes to the "Do Nothing For Autistic Children" principles of former federal Health Minister Tony Clement.

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ABA Effectiveness and Autism's On Off Switches

The latest explosion in the Autism Knowledge Revolution is the much ballyhoo'd (Scientific American, Washington Post, Times Online, TIME etc.) study in the current issue of Science. The fuss and the hoopla is well deserved. The results suggest possible cures, appear to explain the effectiveness of ABA as an early learning intervention, and demonstrate that both genes and environment are probably involved in causing autism disorders. And as stated in the abstract the study appears to have identified a mechanism common to seemingly diverse autism mutations:

"The largest deletions implicated genes, including PCDH10 (protocadherin 10) and DIA1 (deleted in autism1, or c3orf58), whose level of expression changes in response to neuronal activity, a marker of genes involved in synaptic changes that underlie learning. A subset of genes, including NHE9 (Na⁺/H⁺ exchanger 9), showed additional potential mutations in patients with unrelated parents. Our findings highlight the utility of "homozygosity mapping" in heterogeneous disorders like autism but also suggest that defective regulation of gene expression after neural activity may be a mechanism common to seemingly diverse autism mutations."

The study of 88 families in which one or more children had been diagnosed with autism, and the parents of each autistic child were cousins in the Middle East found that some genes involved in early learning are turned off but may be capable of being turned back on, Scientific American reports that:

"We're showing, on the one hand, that autism seems to have a large genetic component," says study co-author Christopher Walsh, chief of genetics at Children's Hospital. "But, the genes that are involved are actually those that are involved in responding to the environment and learning."

The findings, Walsh says, reinforces the importance of early diagnosis of autism and intervention, particularly behavioral therapy and learning in enriched environments through repeated activities. Performing these sorts of tasks may help strengthen cellular connections, compensating for the malfunctioning genes."

This is very bad news for anti-ABA advocates like Michelle Dawson and Dr. Laurent Mottron and the Neurodiversity ideologues at the "Autism" Hub. This study clearly supports the effectiveness of ABA as an early learning intervention as stated in Scientific American by study co-author Christopher Walsh, chief of genetics at Children's Hospital Boston:

"Our work reinforces the importance of early intervention and behavioral therapy," he says. "The more we understand about genetics the more we understand how important the environment is."

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Early Early Screening Urged for Autism by US Pediatricians

The American Academy of Pediatrics will be recommending that all children be screened twice for autism by age 2 to allow maximum benefit from early intervention. The AAP points out early indicators of autism such as 4-month-olds not smiling at the sound of Mom or Dad's voice, babies who don't babble at 9 months, 1-year-olds who don't point to toys, or the loss of language or social skills at any age.

Conor was diagnosed 9 1/2 years ago at age 2. At that time, in New Brunswick, age 2 was an early diagnosis age for autism and we had no idea what autism was until Conor was diagnosed, initially with PDD-NOS, and as the severity of his autism became more obvious, with Autism Disorder. The early indicators for us were his failure to smile or show any response to peek a boo and other playful interaction. He had persistent fascination with sand, sifting it for lengthy periods of time but we did not find that alarming. His failure to develop any language skills by 12-14 months (other than saying the word "circle" on one occasion) was our most serious concern and we took him to our family doctor.

Our family doctor responded with the "boys develop language later" answer but we were not convinced. Our family doctor was one of those sometimes rare professionals who actually listened to our concerns though and he referred us to a pediatrician with some background in developmental disorders and after a series of tests Conor was diagnosed.

Unfortunately for Conor ABA intervention was not readily available in New Brunswick at that time. Most of the local Autism Society efforts were half day workshops on an eclectic mix of autism related topics. An activist group of parents emerged in response to the void in autism services in New Brunswick and we fought hard to get early intervention funded by the province, too late for our own children. But the benefit of those efforts will be felt by newly diagnosed autistic children in New Brunswick and that is a good thing - a very good thing.

The earlier an autism diagnosis is received, the better. And in New Brunswick today, although things are far from perfect, evidence based intervention is available for those parents who choose it for their child - if they get an early diagnosis.

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Autism Speaks, Autism Leadership and Board of Education of City of New York v. Tom F., 06-637

The autism communities in the US and Canada have suffered from a common problem - a lack of strong leadership, focused on the important priorities of raising awareness, generating funds for research and advocating for effective health and education treatments for autistic persons. That scenario began to change for the better though with the emergence of Autism Speaks under the leadership of Bob and Suzanne Wright.

The Wrights' media savvy, contacts and organizational skills have worked wonders at raising autism awareness, real awareness of autism as what it is a debilitating neurological disorder. From the very best stand up comics and TV stars to NASCAR racers the Autism Speaks team have put autism into the public consciousness in a very big way. They have generated funds for important autism research. And they have participated in a significant United States Supreme Court decision Board of Education of City of New York v. Tom F., 06-637.

As set out in the Autism Speaks Press Release the New York City Department of Education had argued that even if the child's IEP is demonstrably inappropriate, a parent should not have standing to challenge their child's IEP unless the parent has first "tried out" the school district's IEP.

Autism Speaks filed an amicus brief in the case focusing on the critical nature of early intervention for children with autism which explained why parents of children with autism should not be forced to "try out" demonstrably inappropriate and ineffective IEP programs during what may well be a relatively narrow window of opportunity. The Autism Speaks press release indicates that Justice Ruth Bader Ginsburg quoted from that brief during oral argument.

Here in Canada our education system operates under different legal and constitutional considerations then in the United States. And American decisions have no binding effect in Canadian courts. They can still be influential, however, directly in the court systems as non binding precedents, or indirectly, by influencing educators who take American developments under consideration. Hopefully this ruling by the US Supreme Court will have some positive influence on Canadian educators and will dissuade them from pursuing the NY City Board of Education approach.

In any event, a big Thank You to Autism Speaks for its excellent leadership in addressing the real needs of autistic children.

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