Autism Hero Stefan Marinoiu's Hunger Strike For Autism Now

There are many ways parents and other concerned citizens can advocate for health, treatment, education and residential services for autistic children and adults. Some join organizations, hold awareness meetings with government, business and the public, write letters to the editor and so on. Stefan Marinoiu of Toronto, who I met a couple of weeks ago during the recent Medicare for Autism Campaign NOW! visit to Toronto and Oakville, goes much further. Stefan has put it all on the line advocating for autism. And he is doing it again, right now. Stefan began a hunger strike for autism on May 5 outside Queen's Park in Toronto.

This winter Stefan walked for 11 days, over more than 200 miles, from Toronto to Ottawa, in the middle of a tough Canadian winter, blizzards and all, in an effort to meet Alleged Health Minister Tony Clement to ask the Canadian government to do something to help autistic people in Canada. He was traveling on foot with no warm trailer to retire to at the end of the day or if things got rough. With his winter autism trek Stefan literally put his life on the line advocating for autism change. Stefan got a 15 minute meeting with Minister Clement who said very little of substance. While the alleged federal Health Minister was not moved by Stefan's efforts parents of autistic loved ones across Canada were very moved. It was a privilege for me to meet Stefan in Toronto and Oakville. He is a genuine and compassionate person and has a great family.

Stefan's daughter Lia has started a Facebook group HUNGERSTRIKE for AUTISM NOW on which you will find updates and information about Stefan's Hunger Strike for Autism Now. As Lia points out her father is a type-2 diabetic. His hunger strike again poses serious risks to Stefan's health. Stefan's willingness to put it on the line for autism is a reflection of his tremendous personal courage and his strong convictions. It also reflects his frustration with the lack of help for autistic people like his son, 15 year old Simon, as shown in this Toronto Sun video:

I hope that Stefan takes care of himself as he tries again to impress upon government and public decision makers the impact that autism is having on autistic persons and their families and the need to take serious action to address Canada's autism crisis.

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Wales Takes National Autism Action While Canada (Harper) Ignores National Autism Crisis

New, wide-ranging efforts to tackle autism and improve services for those who are affected by the condition were announced today by the Welsh Assembly Government. The Autistic Spectrum Disorder (ASD) Strategic Action Plan is to be launched today at the 3rd Wales International Autism Conference organised by Autism Cymru in Cardiff. Funding for the next three years has been identified with the first years funding of £1.8m being announced to drive forward key actions for the first years. Wales is the first country in the world to have established a cross-cutting national strategic action plan for ASD that will help the estimated 30,000 people that are either directly or indirectly affected by Autism in Wales.

.....

The Action Plan will drive improvements across both children, young people’s and adult services in health, social services and education services – and also expand into areas of housing, leisure and society in general.

- Published by Jon Land for 24dash.com in Communities , Health on Tuesday 22nd April 2008 - 12:13pm

It is encouraging to see a national government tackling its autism issues head on, without hiding behind any contrived excuse they can find to avoid helping the many citizens with autism disorders. Canadians, on the other hand, have a national government led by Prime Minister who is oblivious to autism and the autism crisis in our country. The nicest thing that can be said about Alleged Health Minister Tony Clement is that he doesn't really appear to know much about autism. MP Mike Lake of the governing Conservative party, and father of an autistic child, is an occasional autism "spokesman" for the governing Conservatives; usually helping Harper pass the buck. Of course Mr. Lake has more pressing matters on his agenda .... like presenting a petition to the House of Commons to protect the mythological Bigfoot creature. As for autistic children in need of treatment in Saskatchewan or Manitoba or the Yukon? Well Mike Lake needn't worry he lives in oil rich Alberta his child can receive government funded intervention until age 18.

Congratulations to the Welsh Assembly Government for doing what the Canadian government of Stephen Harper has not done; launch a national autism strategy to provide autism help to all its autistic citizens.

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Medicare for Autism NOW! in Oakville, Organizing and Sending A Message

It was a warm sunny day in Oakville yesterday as the Medicare for Autism NOW! team gathered at the Iroquois Ridge Community Centre to meet families in the communities west of Toronto, to organize and to send a message to ALL federal politicians: Canadians are suffering from a NATIONAL autism crisis. Some autistic children, depending on where they live, receive NO treatment for autism. The lack of treatment prevents some autistic children from living a full life and imposes emotional and financial hardship on family members.

Many of us have talked about a National Autism Strategy to address Canada's national autism crisis for years. Some politicians of character and conscience, people like Senator Jim Munson and MPs Andy Scott, Peter Stoffer and Shawn Murphy have actively campaigned for a National Autism Strategy. Stephen Harper, alleged Health Minister Tony Clement and Conservative MP and autism father Mike Lake on the other hand have largely mocked the efforts for a national autism strategy. Aided and abetted by Dr. Rémi Quirion and the CIHR the national autism strategy has been reduced to a less than mediocre web site and a secretive, politicized and staged National Autism Symposium that resulted in absolutely NO autism information being disseminated to Canadians.

Yesterday I had the privilege of speaking at the Oakville rally along with Jean Lewis who has led litigation and political autism battles in British Columbia and experienced political organizer David Marley. We were joined by Jennifer O'Brien from Oakville, autism winter trek hero Stefan Marinoiu from Toronto, Barry Hudson from Toronto and constitutional lawyer Deborah Coyne from Toronto. Medicare for Autism NOW! is national in scope. We are organizing coast to coast and we have a message for federal politicians of all stripes. Something must be done NOW. We need Medicare for Autism NOW. David Marley, show in the bottom picture below has prepared a strategy. A number of ridings that were decided by 2% or less in the last election will be targeted for election action by the Medicare for Autism NOW team. We will be making an impact in those ridings on behalf of the candidates, whatever their political stripe, who support Medicare for Autism NOW. David Marley is also organizing of team of people with political organizing skills and experience to help get our message across effectively.

One of the key ridings will be the Parry Sound Muskoka riding of Alleged Health Minister Tony Clement. Mr. Clement won by one of the smallest margins of any MP in Canada in the last election. Stefan Marinoiu, David Marley and Jean Lewis toured the riding this week and apparently there is already, for various reasons. substantial dissatisfaction with Mr Clement amongst his riding constituents who were also very supportive of the Medicare for Autism effort. Medicare for Autism NOW! will be active in the riding of alleged Health Minister Clement to remind constituents of Mr Clements refusal to help autistic Canadians and their families.

Iroquois Ridge Community Centre in Oakville

Jennifer O'Brien

Jean Lewis

Stefan Marinoiu

Deborah Coyne

Barry Hudson

David Marley

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Spring WILL Come and So Will A National Autism Strategy

This has been a tough winter but these flowers won't back down. They are fighting for spring and it will arrive. Those of us who are fighting for a National Autism Strategy can not back done either. We must continue to fight. If we do we will have a National Autism Strategy as surely as spring follows winter, even a tough winter. Even Stephen Harper and Tony Clement can not stop the arrival of a REAL National Autism Strategy.

Email, write, fax or call your Member of Parliament and let him/her know that you want a National Autism Strategy. Let them know that if they want your vote and family members who support a National Autism Strategy they will do what it takes to give Canadians a REAL National Autism Strategy.

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Canada's Sham Autism Symposium Failure and the Need for a REAL National Autism Strategy

The National Autism Symposium was supposed to be a key plank in the Harper government's otherwise pathetically weak National Autism Strategy. The symposium was initially postponed when the Harper government and the directors of the CIHR got word that actual, honest to goodness, parent autism advocates were being put forward as autism society representatives. Scared at the prospect that parents would voice the need for federal funding of Applied Behavior Analysis for autistic children in Canada the Harper government and the politically sensitive directors of the Canadian Institutes for Health Research postponed the symposium and rescheduled it for November 7 - 9 in Toronto. This time the CIHR took no chances and determined for themselves and without the names of persons who would allegedly "represent" the provincial autism community. Apparently the CIHR is as weak on democratic principles as it is in its understanding of autism and autism treatments.

In New Brunswick the Autism Society New Brunswick was not asked for the name of a representative to send to the symposium. In fact the ASNB was not even consulted about the names of persons they might wish to have represent New Brunswick's autism community. Some persons in New Brunswick were consulted and I know for a fact that my name was put forward but rejected by the CIHR political leadership. It seems clear that the CIHR wanted to avoid any outspoken advocates of evidence based interventions for autistic children.

There was no list of guest speakers or specific subjects published in advance of the "National" Autism Symposium. Unfortunately, even after the symposium there has been very little in the way of actual substantive information about the symposium made available to the Canadian public. Here is the only summary of the National Autism Symposium that I have been able to find as published on the CIHR web site by Dr. Rémi Quirion, OC, PhD, FRSC, CQ, Scientific Director of the CIHR's Institute of Neurosciences, Mental Health and Addiction (INMHA):

National Autism Research Symposium

Toronto, November 8-9, 2007

CIHR had been tasked by the Hon. Tony Clement, Minister of Health, with organizing this event and CIHR-INMHA, with assistance from CIHR-IHDCYH, took the lead. The symposium was part of a series of initiatives on autism announced by Minister Clement in November 2006. The other commitments included exploring the establishment of a research chair focusing on effective treatment and intervention for autism spectrum disorders (ASDs); launching a consultation process on the feasibility of developing an ASD surveillance program through the Public Health Agency of Canada; creating a dedicated page on the Health Canada web site focused on ASD; and designating the Health Policy Branch of Health Canada as the ASD lead for actions related to ASD at the federal government level.

The symposium brought together 95 attendees including researchers, health professionals, educators, service providers, family members and persons with autism, as well as community organizations and government representatives. All the provinces and two territories (Northwest Territories and the Yukon) were represented. The goals of the symposium were to inform participants about the current state of knowledge on autism, to further the dissemination of ideas and to assist the research community in planning for research.

The opening evening session featured presentations from a person with autism (Daniel Share-Strom), a parent (Jennifer Overton) and a prominent researcher in the field (Dr. Susan Bryson, Dalhousie). On the second day, after introductory comments from the Health Minister, twelve leading Canadian researchers in the field of autism discussed the latest findings, with brief question and answer periods. Symposium participants then broke into six groups to discuss specific issues relevant to autism research. Each group suggested three key ideas to help inform research and presented these to the symposium as a whole. Every participant then had an opportunity to provide written feedback on these ideas and the symposium closed with some general comments from the floor.

Feedback from the symposium was very positive, with many participants appreciative of the opportunity to meet with individuals from different sectors and many expressing a wish to make this kind of meeting a regular event. For further information on this meeting, please contact Barb Beckett at {bbeckett@cihr-irsc.gc.ca}[mailto:bbeckett@cihr-irsc.gc.ca]

After bragging about Health Minister Tony Clements weak National Autism Strategy Dr. Quirion then stated in the summary that the goals of the symposium included "to inform participants about the current state of knowledge on autism, to further the dissemination of ideas and to assist the research community in planning for research." The summary itself sets out no description of the current state of knowledge on autism and, to my knowledge, no ideas have been disseminated. Judging by Dr. Quirion's objectives it appears that the National Autism Symposium was a failure.

In all fairness to the timid, politically sensitive, bureaucrats at the CIHR the American Academy of Pediatrics stole their thunder by releasing on October 29, 2007, just eight days before the CIHR "facilitated" autism symposium, two landmark reports on autism. In one of those reports, Management of Children With Autism Spectrum Disorders the AAP stated that:

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and
community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have
been significantly better than those of children in control groups.31–40

The significance of this report on the effectiveness of ABA and its impact on the Tony Clement/CIHR sham autism symposium can not be overstated. Released just eight days prior to the sham symposium put on by Minister Clement and the CIHR bureaucrats the report undermined one of the real goals of the symposium - to present ABA as merely one treatment option amongst a host of such options. The AAP review updated previous credible American reviews of the Autism treatment research literature including the New York state and California reviews, the US Surgeon General review and the MADSEC Autism Task Force Report 1999-2000 all of which endorsed ABA as, to date, the only autism intervention with a solid evidentiary bases in support of its effectiveness in helping autistic children. This result ran directly contrary to the hopes of Minister Clement and his staged autism symposium; a symposium so obviously contrived to suit the political agenda of the Harper-Clement government that no substantive report of the "ideas to be disseminated" about autism has yet been "disseminated". The CIHR people are apparently too ashamed of their sham symposium to issue a detailed report of its proceedings, which would undoubtedly stand in direct contradiction to the much more credible AAP report.

It is long past time that the Canadian autism community stopped putting up with such contrived nonsense and demanded a real National Autism Strategy; one which would see our federal government help autistic children wherever they live in Canada.

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An Autism Message From BC for Alleged Federal Health Minister Tony Clement

The Medicare for Autism NOW rally held in Burnaby was a huge success. The message is being heard across Canada. Autism is a medical disorder. A well studied treatment is available and it should be covered under Canada's medicare system. The Global News video which follows includes some commentary from dedicated autism advocates Jean Lewis and David Marley.The video also includes some nice footage of parents and the children they love; the children they are doing everything they can to help.

Nothing will be done, though, unless our federal politicians, people like Prime Minister Harper and Alleged Health Minister Tony Clement can be convinced that it is in their political best interests to take action. "Health" Minister Clement prove you really are a Health Minister, take steps now to include medicare coverage for ABA, a proven effective treatment for autism.

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Senator Jim Munson Continues National Autism Strategy Efforts

Senator Jim Munson is continuing his campaign for a National Autism Strategy. Senator Munson has been unrelenting in his efforts to help a constituency that Prime Minister Harper and Alleged Health Minister Tony Clement ignore - Canadians with autism. Speaking recently on Prince Edward Island Senator Munson stated that he would like to see the federal government take the lead in developing a National Autism Strategy to end the current patchwork of provincial programs"

“It’s expensive but buying tanks is expensive too. “What we have now is a
patchwork, scattergun approach to dealing with autism in individual provinces.”

Senator Jim Munson, The Guardian, February 23, 2008

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Autism in Ireland - Fianna Fail Uses Old, Failed Logic, Tired Clichés, In Denying ABA Help To Autistic Children

It is sad to see that in Ireland today that old, failed logic and tired clichés like "one size does not fit all" are being trotted out by the governing Fianna Fail party to deny Applied Behavior Analysis (ABA) services to autistic children in Ireland:


Fianna Fáil's Peter Power appealed to the Opposition not to assume that those opposing the motion were 'anti-children', saying nobody was absolutely right, or absolutely wrong.

There was derisive laughter from the gallery when Fianna Fáil's Margaret Conlon, a former teacher, referred to children with special needs demonstrating their abilities 'when they play their tin whistles as a group'.

Concluding the debate for the Government, Minister Micheál Martin said the Government did not believe 'one size fits all', because autism is a continuum, and said the idea of a wide range of teaching methods was not a ridiculous suggestion.



These rationalizations were trotted out a decade ago in New Brunswick and other jurisdictions in Canada and the United States in an effort to deny proven effective ABA services for autistic children desperately in need of such help. These rationalizations are used to provide cover for a refusal to provide effective help for autistic children, not because of genuine concern that other methods might be more appropriate, but because of the cost implications of providing effective ABA intervention.

The reality is that stubborn insistence on refusing the only widely endorsed, evidence based, effective intervention for autistic children is motivated by nothing more than miserliness. The concern of those who resort to such obviously weak excuses has nothing to do with ensuring that each autistic child receives the best intervention possible for that child. If it were they would provide ABA for each child for whom, in their wisdom, they consider it appropriate and other interventions, whatever they might be, for the others. But they won't do that either; governing parties are often just too cheap to spend money to provide evidence based, effective ABA treatment and education for autistic children.

In New Brunswick the government of the day tried the old "one size does not fit all" approach . The debate over whether ABA should be provided by government was intense and at times very personal. But today, although improvements are badly needed, government funded ABA intervention is provided for pre schoolers and some methods and resource teachers and teacher aides are being trained to provide ABA in the school setting. My son with Autism Disorder , and in grade 6, receives ABA instruction every day at Nashwaaksis Middle School. ABA services are also provided to one extent or another in jurisdictions across Canada.

The debate in New Brunswick, and elsewhere, was moved forward by focusing on the principle that interventions should have a solid evidence basis to support their effectiveness. Without an evidence basis parents and officials are essentially gambling with the development of autistic children by wasting time on unproven and unreliable interventions. Here in New Brunswick it was the insistence on evidence based interventions that emerged from an Inter Departmental Committee review of autism specific services in 2001, which at that time were virtually non existent. It is that commitment to evidence based practices which has led to substantial improvements, and to the provision of ABA services for autistic children in New Brunswick.

One of the most helpful and influential reviews of the studies of autism intervention effectiveness was the MADSEC ( Maine Administrators of Services for Children with Disabilities) Autism Task Force Report 1999, 2000 (rev.ed.) The MADSEC Autism Task Force was commissioned to:

perform a detailed analysis of methodologies with which to educate children
with autism. This analysis will focus upon the scope and quality of scientific
research which objectively substantiates, or fails to substantiate, each method’s
effectiveness. Based upon the research analysis, the MADSEC Autism Task Force
will make recommendations for the consideration of decision makers who are key
to the intervention of children with autism. (Mission Statement, p. 2 )

The MADSEC team reviewed the scientific literature, literally hundreds of studies, in support of various autism interventions. It concluded, as summarize in its Executive Summary at pages 5-6:

• Substantiated as effective based upon the scope and quality of research:

Applied behavior analysis. In addition, applied behavior analysis’ evaluative procedures are effective not only with behaviorally-based interventions, but also for the systematic evaluation of the efficacy of any intervention intended to affect individual learning and behavior. ABA’s emphasis on functional assessment and positive behavioral support will help meet heightened standards of IDEA ‘97. Its emphasis on measurable goals and reliable data collection will substantiate the child’s progress in the event of due process.

• Shows promise, but is not yet objectively substantiated as effective for individuals with autism using controlled studies and subject to the rigors of good science:

Auditory Integration Training, The Miller Method, Sensory Integration, and TEACCH.

• Repeatedly subjected to the rigors of science, which leads numerous researchers to conclude the intervention is not effective, may be harmful, or may lead to unintended consequences:

Facilitated Communication.

• Without scientific evaluation of any kind:

Greenspan’s DIR/”Floor Time,” Son-Rise.

The MADSEC depiction of ABA as the only autism intervention substantiated as effective, based on the scope and quality of research in support, was not the only review of the research literature to reach such a conclusion. State agencies in New York and California and the office of the US Surgeon General had reached similar conclusions. Nor was it the last.

In Management of Children With Autism Spectrum Disorders, October 29, 2007 the American Academy of Pediatrics stated:

Applied Behavior Analysis

Applied behavior analysis (ABA) is the process of applying interventions that are based on the principles of learning derived from experimental psychology research to systematically change behavior and to demonstrate that the interventions used are responsible for the observable improvement in behavior. ABA methods are used to increase and maintain desirable adaptive behaviors, reduce interfering maladaptive behaviors or narrow the conditions under which they occur, teach new skills, and generalize behaviors to new environments or situations. ABA focuses on the reliable measurement and objective evaluation of observable behavior within relevant settings including the home, school, and community. The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology 21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–40

Other interventions were evaluated by the AAP but no other intervention received a comparative positive assessment, not even close.

Fianna Fail is using the old beaten argument that one size does not fit all to justify refusal to provide ABA services to autistic children. In doing so they are denying those children the opportunity to realize, in the words of the AAP, "substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior".

Fianna Fail has its counterpart here in Canada. Although most provincial jurisdictions try to provide ABA services, the level of funding, and extent of service provided, varies from province to province. Our federal government has huge surpluses but will not provide funding to the provinces to pay for more ABA intervention. The Conservative government of Prime Minister Stephen Harper and Alleged Health Minister Tony Clement refuse, on a variety of flimsy grounds, including the old "one size does not fit all cliché", to spend money to help autistic children.

For Ireland's Fianna Fail, and for Canada's Conservative Party, it appears that money means more than children .... more than autistic children anyway.

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Let no child be left behind. National Autism Strategy?

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Autism Trek Update - Federal Health Minister Clement Passes the Autism Buck (but not the bucks) to the Provinces

The Belleville Intelligencer continued its excellent coverage of dedicated Autism Dad Stephan Marinoiu's winter Autism Trek to Ottawa reporting on his greeting in Ottawa by long time autism advocate Senator Jim Munson and his meeting with federal "Health" Minister Tony Clement. Mr. Marinoiu described the challenges faced in Ontario where ABA service did not become available for his son. Unfortunately, as reported by Mr Marinoiu and the Intelligencer, alleged Health Minister Clement merely passed the buck for autism services, but not the bucks, to the provinces.

High School political science students in this country are aware that the primary constitutional responsibility for health care rests with the provinces. But our history also shows that the provinces and the federal government have cooperated to provide a national health care system. There is nothing to stop the federal government from spending some of those surplus dollars taken from all Canadians to help provincial governments fund needed autism services across Canada. So that all Canadians with autism receive the services they need.

It is long past time that alleged "Health" Minister Clement put the Health back in his title and started acting like a Health Minister.

To put it politely Minister Clement - do your job or step aside please.

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Autism Trek

Stefan Marinoiu is walking 452 kilometres from Toronto to Ottawa to raise autism awareness in Canada. Specifically he plans to speak with the federal government about increasing funding to support families like his who are dealing with autism and to fund more autism research. Mr. Marinoiu's trek is motivated by autism reality, the reality of raising a 15 year old autistic boy:

Marinoiu has a 15-year-old son who was diagnosed with autism when he was a child.

Marinoiu and his wife have struggled to provide proper support while their son's condition has deteriorated with age. He has now become aggressive, a common symptom in autistic children, and Marinoiu is afraid the Children's Aid Society may take him away, fearing he could hurt their younger six-year-old child.

"His autism has progressed to the point that communication is a struggle," Marinoiu said. "We just do not have the money to provide proper care for him."

- The Belleveille Intelligencer

Rhetoric about finding the joy in your child's autism does not help families like the Marinoiu's. Real solutions to difficult and at times heart wrenching challenges are needed. Hopefully the federal government will give Mr. Marinoiu an audience in which they listen to his concerns and come up with ways it can help families like the Marinoiu's. Not every autistic person makes submissions to the Supreme Court of Canada or the Canadian Senate. Some face much more serious challenges and require much more help to live a decent life in this country. Hopefully Prime Minister Stephen Harper and Health Minister Tony Clement will listen to this dedicated Dad who has put it on the line to trek from Toronto to Ottawa in the cold Canadian winter.

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Autism Communication Deficit At The CIHR

The Canadian Institutes of Health Research have played an important role in fostering autism research. The CIHR quite properly promotes its role in funding the recently reported study on the association of certain chromosomes with some instances of autism. The CIHR also professes to be committed to partnering with relevant "stakeholders" and community interest groups in an open, transparent manner:

Freedom of Inquiry	CIHR recognizes that the primary purpose of all research in the public domain is the creation of new knowledge in an environment that embodies the principles of freedom of inquiry and unrestricted dissemination of research results.
Transparency and Accountability	Decision-making processes should ensure that all decisions are fair, open, reputable and able to bear close public scrutiny. Honest and cost-effective accountability mechanisms will be in place for all aspects of the work undertaken by CIHR.
Collaboration	CIHR values positive and mutually respectful relationships with partners and stakeholders who are committed to openness, responsibility and fairness and are mutually respectful of each other's priorities and objectives.

Measured against the noble principles espoused by the CIHR are the realities of the CIHR organized national autism symposium which was held, according to rumour at least, November 8 and 9 2007 in Toronto. The symposium was supposed to be a key element in the Stephen Harper- Tony Clement "national autism strategy" such as it is.

Invitees to the symposium were told that the symposium would be an exercise in community building, an odd goal for such a secretive event. No program, list of speakers or list of invitees to the event were ever published. The invitation also indicated that the symposium would be conducted by professional facilitators, which is a PR way of saying that the discussion would not be open and dissent or criticism would not be permitted. The hand picked delegates were selected not by the community organizations they were supposed to represent but by CIHR officials.

To date, no information has been released of the proceedings of the invisible National Autism Symposium of November 8 and 9 2007. In relation to autism, it seems reasonable to say that the CIHR has failed miserably in its goal of community building. It is not clear what the CIHR is so afraid of although it seems that parents advocating for a national autism strategy to actually help Canadian children are high on its "do not invite" list. Perhaps the CIHR scientists/bureaucrats are simply trying to ensure maximum compliance with their marching orders from Prime Minister Harper and Health Minister Clement.

What the CIHR is not doing is community building. What the CIHR is not doing is communicating with Canadians about autism, autism research or effective evidence based autism interventions. When it comes to autism the CIHR suffers from a massive communication deficit.

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Autism and Canada's Jurisdictional Shell Game

In Autism fight gaining momentum Susan Sherring of Sun Media interviews Senator Jim Munson and Autism Dad Andrew Kavchak and describes their efforts in fighting for a National Autism Strategy in Canada. The article also describes the Stephen Harper-Tony Clement non response to the Senate Committee autism report Pay Now Or Pay Letter. As stated by Senator Munson:

“As a nation, we have to take a look at all of this. We have an obligation as a society. For families with an autistic child, this is extremely expensive. You’ve got families breaking up, mortgaging their homes. I’m tired of the jurisdictional shell game,” he said.

“The bottom line is we have to put it all on the table. If we don’t, how are we ever going to have a national program? People are scrambling to get treatments for their sons and daughters.”

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Tony Clement's Invisible Autism Symposium

Health Minister Tony Clement

Canada, courtesy of the federal government of Prime Minister Stephen Harper and Health Minister Tony Clement, has offered one of the weakest responses by any national government to the world autism crisis. To date it consists of a mediocre autism web site and an invisible national autism research symposium held on November 8 and 9 2007.

The delegates to this invisible symposium were hand picked to ensure compliance with the Harper-Clement agenda, the symposium was structured to ensure that serious debate would be avoided and ... absolutely no information has been released about the results of this secretive, elitist symposium of the compliant. Parents by law, necessity, and commonly accepted morality speak for their autistic children but they, and thereby their children, were not invited to Tony Clement's Invisible Autism Symposium. And so far, we have no idea what the Harper-Clement Autism Delegates discussed at the Invisible Autism Symposium held November 8 and 9 in Toronto.

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Autism Dad Kavchak Asks Canadian Health Minister For REAL Autism Action

For several years Andrew Kavchak, parent of an autistic child/child with autism, has campaigned relentlessly for a National Autism Strategy. As the father of an autistic child Mr. Kavchak understands the need for a National effort to address Canada's autism crisis.

While movement appeared headed in that direction last year with the passage of the Andy Scott/Peter Stoffer private member's motion and the debate on Shawn Murphy's initiative, the momentum toward a National Autism Strategy has been stopped cold, as intended, by the neo-conservative ideology of the Harper government and Health Minister Tony Clement.

In his polite letter to Health Minister Clement Andrew Kavchak draws on the example of our American neighbors to try and kick start the Harper government's feeble National Autism Strategy.

Good luck Andrew. You will need it, or a change of government, to revive any prospect of a real National Autism Strategy in Canada.

......................................................

Hello Minister Clement,

Please see the information below from the US government about its latest initiative in dealing with the autism crisis.

Is there any chance that the Canadian federal government might take any similar action in recognizing the need for some federal leadership in developing a national autism strategy?

You may recall that exactly a year ago the House of Commons voted in favour of a motion that called for the creation of a National Autism Strategy. The proposed strategy had four components...three of which involved consultation and cooperation with the provinces. Under your watch, no consultation or cooperation has happened so far...at least, none that is known to the community. Perhaps the creation of such a "new interagency autism coordinating committee" could prove useful in turning the empty words of the motion into meaningful reality and provide some hope for the community?

Andrew Kavchak
Ottawa, ON
__

HHS Secretary Leavitt Announces Members of the New Interagency Autism Coordinating Committee

WASHINGTON, Nov. 27 /PRNewswire-USNewswire/ -- HHS Secretary Mike
Leavitt announced today the members appointed to the Department of Health
and Human Services' new Interagency Autism Coordinating Committee. This
committee coordinates efforts within the department to combat autism
spectrum disorder through research, screening, intervention, and education.
The committee will facilitate the efficient and effective exchange of
information on autism activities among member agencies, and coordinate
autism-related programs and initiatives.

"This important committee will play a key role in coordinating autism
research, services, and education related to autism spectrum disorder,"
Secretary Leavitt said. "I'm pleased that its members bring to the
committee a wide range and great depth of expertise, including research and
program administration, advocacy and personal experience with the
condition."

Authorized under the Combating Autism Act of 2006, the Interagency
Autism Coordinating Committee advises the HHS Secretary and the Director of
the National Institutes of Health (NIH). Secretary Leavitt delegated the
authority to establish the committee to the NIH, which designated its
National Institute of Mental Health (NIMH) to lead this activity.

The committee chair is Thomas R. Insel, M.D., director of NIMH.

"The committee's first priority will be to develop a strategic plan for
autism research that can guide public and private investments to make the
greatest difference for families struggling with autism," Dr. Insel said.

HHS is active in fostering research and making the results available to
aid people with autism.

Among the activities:

NIH funding and expertise support the Autism Centers of Excellence
program, which the agency launched after the Combating Autism Act was
passed, to seek the causes of autism and new treatments for the disorder.

The Centers for Disease Control and Prevention (CDC) supports a
multi-state collaborative study to help identify factors that put children
at risk for autism spectrum disorders (ASDs) and other developmental
disabilities. The five-year study, called SEED (Study to Explore Early
Development), is currently enrolling participants.

CDC has reported findings from the first and largest summary of autism
prevalence data from multiple U.S. communities. These findings, which found
autism spectrum disorders in approximately one in 150 children in these
communities, was reported by the Autism and Development Disabilities
Monitoring Network, which was designed to provide more consistent and
reliable estimates.

Federal members of the new panel:

Duane Alexander, M.D., is director of the National Institute of Child
Health and Human Development at NIH. The Institute supports research on all
stages of human development, from preconception to adulthood, to better
understand the health of children, adults, families, and communities.

James Battey, M.D., Ph.D., is director of the National Institute on
Deafness and Other Communications Disorders at NIH. The Institute supports
biomedical and behavioral research and research training in the normal and
disordered processes of hearing, balance, smell, taste, voice, speech, and
language.

Ellen Blackwell, M.S.W., is a health insurance specialist of the
Division of Community and Institutional Services, Disabled and Elderly
Health Programs Group, Center for Medicaid and State Operations, Centers
for Medicare and Medicaid Services where she serves as an expert on
policies that affect individuals with autism spectrum disorders.

Margaret Giannini, M.D., F.A.A.P., is director of the HHS Office on
Disability. Dr. Giannini serves as advisor to the Secretary on HHS
activities relating to disabilities. She is also a member of the Institute
of Medicine of the National Academy of Sciences and fellow of the American
Academy of Pediatrics.

Gail Houle, Ph.D., is associate division director of the
Research-to-Practice Division, Early Childhood Programs, Office of Special
Education Programs, Department of Education where she oversees programs for
children with disabilities and their families funded through the Individual
with Disabilities Education Act. Her expertise focuses on services for
children with autism spectrum disorders.

Larke Huang, Ph.D., is senior advisor on children and a licensed
clinical-community psychologist who provides leadership on federal national
policy pertaining to mental health and substance use issues for children,
adolescents and families for the Substance Abuse and Mental Health Services
Administration.

Thomas Insel, M.D., is director of the National Institute of Mental
Health at NIH. The Institute's mission is to reduce the burden of mental
illness and behavioral disorders through research on mind, brain, and
behavior.

Story Landis, Ph.D., is director of the National Institute of
Neurological Disorders and Stroke at NIH. The Institute's focus is directed
toward reducing the burden of neurological disease through research on the
normal and diseased nervous system.

Cindy Lawler, Ph.D., is scientific program director of the Cellular,
Organs, and Systems Pathobiology Branch, Division of Extramural Research
and Training, National Institute of Environmental Health Sciences at NIH.
The Branch plans, directs, and evaluates the Institute's grant program that
supports research and research training in environmental health.

Patricia Morrissey, Ph.D., is commissioner of the Administration on
Developmental Disabilities at the Administration for Children and Families,
which seeks to improve services to and assure that individuals with
developmental disabilities have opportunities to make their own choices,
contribute to society, have supports to live independently, and are free of
abuse, neglect, financial and sexual exploitation, and violations of their
legal and human rights.

Edwin Trevathan, M.D., M.P.H., is director of the National Center on
Birth Defects and Developmental Disabilities (NCBDDD) at CDC. NCBDDD is
focused on identifying the causes of and preventing birth defects and
developmental disabilities, helping children to develop and reach their
full potential, and promoting health and well-being among people of all
ages with disabilities. Dr. Trevathan is representing Julie Gerberding,
M.D., M.P.H., director of the CDC, on the committee.

Peter van Dyck, M.D., M.P.H., is associate administrator of Maternal
and Child Health at the Health Resources and Services Administration
(HRSA). Dr. van Dyck oversees HRSA's Maternal and Child Health Bureau,
which seeks to improve the health of mothers, children, and families,
particularly those who are poor or lack access to care.

Elias Zerhouni, M.D., is director of the National Institutes of Health.
A world renowned leader in the field of radiology and medicine, Dr.
Zerhouni has spent his career providing clinical, scientific, and
administrative leadership. He leads the nation's medical research agency
and oversees the NIH's 27 Institutes and Centers with more than 18,000
employees.

Non-federal members:

Lee Grossman is president and CEO of Autism Society of America (ASA)
and the parent of a young adult son with autism. Mr. Grossman is also the
chair of the ASA Foundation and a member of the ASA Environmental Health
Advisory Board.

Yvette Janvier, M.D., is the medical director for Children's
Specialized Hospital in New Jersey. Dr. Janvier is also a clinical
assistant professor in the Department of Pediatrics, Robert Wood Johnson
Medical School. Her specialties are autism and developmental and behavioral
pediatrics. Dr. Janvier is a fellow of the American Academy of Pediatrics.

Christine McKee, J.D., has developed and manages an in-home therapy for
her autistic child, creating and/or assembling all of the therapy related
materials. Ms. McKee participates in monthly consultations with a Board
Certified Behavior Analyst/Speech Pathologist. She applies the therapeutic
measures in her daily parenting and childcare routines.

Lyn Redwood, RN, MSN, is co-founder and president of the Coalition for
Safe Minds. Ms. Redwood is also on the board of the National Autism
Association. She became involved in autism research when her son was
diagnosed with pervasive development disorder in 1999. She is a nurse
practitioner with 25 years of experience.

Stephen Shore, Ed.D., is executive director of Autism Spectrum Disorder
Consulting. Drawing on his experiences as an individual with an autism
spectrum disorders diagnosis, Dr. Shore presents and consults
internationally on adult issues pertinent to education, relationships,
employment, advocacy, and disclosure. He also serves on the board of the
Autism Society of America, as board president of the Asperger's Association
of New England, and is on the board of directors for Unlocking Autism, the
Autism Services Association of Massachusetts, MAAP Services, The College
Internship Program, and the KEEN Foundation.

Alison Tepper Singer, MBA, is executive vice president of Autism Speaks
and is a member of the board of directors. Prior to joining Autism Speaks,
Ms. Singer spent 14 years at CNBC and NBC where she served in several
positions. She has both a daughter and an older brother with autism, giving
her long-term, personal experience with the disorder.

The following Web page provides links to additional information on the
Interagency Autism Coordinating Committee, including information about
upcoming meetings and highlights from meetings of the prior committee:
http://www.nimh.nih.gov/research-funding/scientific-meetings/recurring-meet
ings/iacc/index.shtml

NIMH's mission is to reduce the burden of mental and behavioral
disorders through research on mind, brain, and behavior. More information
is available at the NIMH Web site, http://www.nimh.nih.gov.

NIH -- The Nation's Medical Research Agency -- includes 27 Institutes
and Centers and is a component of the U.S. Department of Health and Human
Services. It is the primary federal agency for conducting and supporting
basic, clinical and translational medical research, and it investigates the
causes, treatments, and cures for both common and rare diseases. For more
information about NIH and its programs, visit http://www.nih.gov.

autism

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Dear Health Minister Clement: Re Autism Gold Standard Intervention

October 31, 2007

Honourable Tony Clement
Minister of Health (Canada)

Dear Honourable Minister

Recently your government filed its response to the Senate's "Pay Now Or Pay Later" report on autism services and funding in Canada. As the parent of a profoundly autistic 11 1/2 year old boy I have been active in autism advocacy in my province for the past 9 years. I was disappointed, extremely disappointed, with your government's weak response to an issue which now is estimated to directly affect 1 in 150 Canadians and their families.

In particular I found objectionable your government's stated position that there is no consensus on a gold standard of treatment for autism. That position is simply inconsistent with the professional literature as I understand it, admittedly from the perspective of a mere parent. State and federal agencies in the United States over the past decade from Maine to New York to California have routinely described ABA, Applied Behavior Analysis, as an evidence based effective intervention for autistic children; the only intervention to be accorded that level of recognition of its efficacy.

This week the American Academy of Pediatrics released two autism reports one dealing with, and setting out recommendations concerning the need for very early diagnosis of autism disorders in children. The other report included a review of the professional literature on autism interventions. In Management of Children With Autism Spectrum Disorders the AAP stated with respect to Applied Behavior Analysis (ABA) :

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4

With all respect Honourable Minister, the position that there is no Gold Standard treatment or intervention for autism, is not in the language of the legal profession of which I am a member, "credible". I ask you to reconsider this stand by your government. I also ask you to look past the strict interpretation of Canadian constitutional jurisdiction over health matters on which your government and Mr. Duceppe's Bloc Quebecois relies in opposing federally funded ABA treatment for autism. Cooperative federalism has worked well in many instances in this country and to my knowledge is not inconsistent with the ultimate separatist aims of Mr. Duceppe's party. Before his party achieves full sovereignty autistic children will be growing older and needing ABA services in Quebec where autistic children despite claims of "we do it differently" are also badly in need of funded ABA services.

I ask you to put aside petty politics and help autistic children wherever they reside in Canada. Put the ideology and rhetoric in a drawer for safe keeping and help autistic children with some of the multi billion dollar federal surplus. Help autistic children now. Tomorrow is too late.

Harold L Doherty
Fredericton NB

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