Showing posts with label early intervention. Show all posts

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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