USA's 1 in 68 Autism Rates and Canada's Fake National Autism Strategy

"At present there is no government monitoring system in place to provide us with accurate statistics on the prevalence of ASDs in Canada" 

Autism Society Canada 

The recent USA CDC reports that US autism rates are now estimated at 1 in 68 highlights, yet again, the lack of a Real National Autism Strategy in Canada. One of the few specific commitments made by the federal government over the years was a commitment to conducting a national surveillance program of Canadians with autism disorders.  As the above quote from the Autism Society Canada web site makes clear that has not happened.  Canadians must simply assume that US autism rates, now 1 in 68, also apply here in Canada. 

Canadian parents fought initially , and ultimately unsuccessfully, through the courts in BC (Auton) and Ontario (Wynberg/Deskin) for autism treatment coverage under medicare and autism services before commencing their more overtly political efforts, including the Medicare for Autism NOW! campaign.  Here in the Maritime provinces we took a political approach to developing a national autism strategy with the NB efforts in  which I was personally involved beginning  in 2001, primarily by many discussions with our Fredericton MP, the late Andy Scott.  In 2003  Andy Scott, made a public commitment in 2003 to work toward a National Autism Strategy at a tribute to his 10 years of service as an MP at the Boyce Famers' Market, an event I attended and reported on to the members of the Family Autism Centre for Education (FACE):

"October 19 2003

Hello everyone:

Some good news for those interested in autism issues emerged last night  at the Boyce Farmers' Market in Fredericton New Brunswick as Frederictonian's gathered to pay tribute to MP Andy Scott's  10 years of service as an MP on behalf of Frederictonians and as an advocate for human rights, services for the disabled, and cultural harmony. Andy announced that he would be meeting with Paul Martin in the hopes of pursuing a national Autism strategy. Although health care is primarily within provincial juridiction some health issues, such as breast cancer, HIV, etc. have been approached on a national level because of the magnitude of the issues involved.  While we have all heard political promises in the past,  Andy Scott has a proven track record of commitment to, and follow through on, disabilities and human rights issues.  Great news.

Harold Doherty

Family Autism Centre for Education (FACE)"

Andy's comments at the Boyce Farmers' Market were also featured in a 2003 Telegraph Journal article by Tali Folkins:

"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." 

Andy did answer the call on behalf of autistic Canadians and  actively pushed for a National Autism Strategy which he ultimately realized with the passage of Motion M-172.  However, the motion was essentially a commitment in principle with few obligations being undertaken by our federal government but it did help put autism on our national agenda and it was Andy Scott being Andy ... getting done what could get done ... with a view to moving forward further in future.  One of the specific items that the federal government did commit to in the motion was a national surveillance program, a program that would tell us how many Canadians now suffer from autism disorders.  It is a commitment that has still not been honored 8 years later. 

Andy Scott himself did continue the fight   as demonstrated in his June 5, 2007 statement in the House of Commons:

"Autism 

[Table of Contents]

Hon. Andy Scott (Fredericton, Lib.):

Mr. Speaker, it is regrettable that we have seen little action by the government toward implementing a national autism strategy.

It has been more than a year since I introduced Motion No. 172. My private member's motion called for evidence based standards, innovative funding arrangements for diagnosis, treatment and research, and a national surveillance program.

The motion was adopted in good faith and supported by the government. However, it was very disappointing to see no reference to a national autism strategy in the recent budget or any discussion this spring.

Recently, I joined my colleagues from Charlottetown and Sackville—Eastern Shore and Senator Munson at a rally in Halifax that reinforced that there are families with autistic children across Canada who need the government's help.

The Conservatives should move off their default position of jurisdictional excuses, show creativity and compassion and start helping these Canadians."

Andy Scott's reference to his colleagues from Charlottetown and Sackville-Eastern Shore were  references to PEI's Shawn Murphy and Nova Scotia's Peter Stoffer both of whom, along with Andy Scott and Senator Jim Munson, also worked tirelessly toward achieving a National Autism Strategy.  The rally of which he spoke was a Halifax rally organized by Jean Lewis and FEAT-BC who had been raising autism awareness, lobbying politically and fighting for national autism coverage in the Courts for several years and continued to do so with its "Medicare for Autism NOW!" efforts.  I attended the FEAT autism really in Halifax and had the privilege of meeting Jean Lewis, several of the BC advocates and tireless Nova Scotia autism advocate Jim Young.  Under the BC leadership there have been subsequent national meetings in Oakville and Toronto.

NB MP Andy Scott, FEAT-BC, Medicare for Autism NOW!'s Jean Lewis

National Autism Rally, Halifax, May 26 2007

NS MP Shawn Murphy, Senator Jim Munson, NB MP Andy Scott 

National Autism Rally, Halifax, May 26 2007

Nova Scotia MP Peter Stoffer,  National Autism Rally, 

Halifax, May 26 2007

In 2006 Shawn Murphy went on to introduce his own private member's bill, Bill C-304,  in the House of Commons which, if passed, would have put Canada well on the way to establishing a REAL National Autism Strategy:

C-304

First Session, Thirty-ninth Parliament,
55 Elizabeth II, 2006

HOUSE OF COMMONS OF CANADA

BILL C-304

_____________________________________________

FIRST READING, MAY 17, 2006

_____________________________________________

MR. MURPHY (Charlottetown)

1st Session, 39th Parliament,
55 Elizabeth II, 2006

HOUSE OF COMMONS OF CANADA

BILL C-304

An Act to provide for the development of a
national strategy for the treatment of
autism and to amend the Canada Health
Act

Her Majesty, by and with the advice and
consent of the Senate and House of Commons
of Canada, enacts as follows:

SHORT TITLE

1. This Act may be cited as the National
Strategy for the Treatment of Autism Act.


NATIONAL CONFERENCE

2. The Minister of Health shall, before
December 31, 2006, convene a conference of
all provincial and territorial ministers responsible
for health for the purpose of working
together to develop a national strategy for the
treatment of autism. The Minister shall, before
December 31, 2007, table a report in both
Houses of Parliament specifying a plan of action
developed in collaboration with the provincial
and territorial ministers for the purpose of
implementing that strategy.

AMENDMENTS TO THE CANADA
HEALTH ACT

3. Section 2 of the Canada Health Act is
renumbered as subsection 2(1) and is
amended by adding the following:

(2) For the purposes of this Act, services
that are medically necessary or required under
this Act include Applied Behavioural Analysis
(ABA) and Intensive Behavioural Intervention
(IBI) for persons suffering from Autism Spectrum
Disorder.

Bill C-304 was defeated soundly by a coalition of Harper Conservatives and separatist Blog Quebecois votes in the House of Commons. During debates in the House of Commons Harper conservative MP Mike Lake from Alberta, the autism face of the Harper government, a father of an autistic son, fought against the Murphy bill and helped vote it down to defeat.  

The hard truth is that there will never be a real National Autism Strategy as long as the Harper government rules in Ottawa.  Nor will a REAL NAS emerge from national autism charities that were never part of the struggle for a national autism strategy to begin with and who do not acknowledge the efforts made by parents across Canada who fought hard and long for a National Autism Strategy. National charities dare not speak contrary to federal government policy for fear of risking their charitable status. 

A real National Autism Strategy, even a real, current estimate of the number of Canadians who suffer from autism disorders will not come into existence until the Harper government is retired from office and will only come into existence with parent driven initiatives for whom helping their autistic sons and daughters is their most important objective.   Until then we will have to accept US figures for autism prevalence.  Accordingly, let it be known:

1 in 68 Canadians has an autism spectrum disorder. 

Autism Self Injury and Aggression Can Occur Quickly With No External Provocation

The pictures set out below this commentary were taken in May 2012 and posted on   Saturday, May 26, 2012 under the title Conor's Autism Reality: From Joy To Self Injurious Behavior In A Flash.  I was taking these pictures of Conor enjoying a swing on the playground of his old grade school, Nashwaaksis Memorial School.  It was early Saturday morning, no one else was around; there were no loud noises or disturbances. The weather was pleasantly cool and mild.  Conor was loving his time on the swing and then ... just like that ... he was engaged in self injurious behavior as set out in the last two pictures of this set ... with no external factor whatsoever.  Whatever prompted the head hitting and hair pulling of the last two pics was purely internal. His self injurious behavior in this instance was not an isolated occurrence.  It has happened before and since.  Nor is it always self injurious.  There are times when Conor has been aggressive with his mother and father.  I have  never believed for a second that he actually intends to hurt either of us. Some times he is reacting to external stimuli such as the sound of a phone ringing. It is my belief that when he is aggressive to himself or others he is most often  reacting as he did in these pictures to internal disruptions of some kind.  

I am not generalizing from Conor's reality to those of other persons with autism symptoms or disorders. I was, from the beginning of my understanding of Conor's condition, and during the early days of my autism advocacy, annoyed with people like Michelle Dawson and Dr. Laurent Mottron whose affidavit evidence as an autism expert supported her application for intervener status when she appeared before the Supreme Court of Canada in the Auton case as an "autistic" to oppose government funded Applied Behavior Analysis treatment for other people's children.  I never accepted that  my son with severe autistic disorder and profound developmental delays could be represented even indirectly by this person capable of addressing Canada's highest court. 

Nor do I subscribe to the unsubstantiated belief that persons with autism are responsible for planned violence like the horror committed in the Newtown massacre by a person rumored to have autism/Aspergers.  I do acknowledge though that, at least in my son's case, unplanned, spontaneous, "reactive" aggression  to use CNN's Dr. Sanjay Gupta's term, can occur and can occur in a flash.  Depending on the setting, for example sitting in the back seat while Mom or Dad are driving, the consequences could be very, very serious.  Even in ideal circumstances such as the Saturday morning playground depicted below aggression, whether directed toward himself or those with him, can be serious and frightening. 

There may well be persons with autism disorders whose symptoms do not include self injurious behavior or injury to others. Great, I am happy for them.  But the public at large should not believe for a second that it is not present in some persons with autism in ways that are not always present in non autistic persons.  It is, for many persons with autism, a fact of the brain disorder(s) which manifests  in symptoms that we call autism.   Research is needed on the internal causes of self injury and aggression in persons diagnosed with autism. Treatments need to be developed.  Pretending such internally provoked or aggravated aggression is not part of autism won't make these realities disappear. 

Instead of spending years trying to streamline autism symptoms and disorders into one neat package it would be much more helpful if the aggressive component of the heterogeneity of autism symptoms were acknowledged and addressed through research and improved treatments. 

Barry Hudson: Ontario and Canada Are Failing Our Autistic Children and Adults

Barry Hudson is  a very well informed, articulate father of an autistic son in Ontario, autism advocate and director with Medicare for Autism Now! Barry describes his family life with autism and the impact of autism on family life.  He describes waiting lists and other obstacles that the Ontario bureaucracy uses to prevent children with autism from receiving autism services.  Children with autism who are not considered severe enough do not receive treatment. Children with autism who are considered too severe do not receive treatment.  A child with autism who clears these hurdles will have treatment services discontinued if they do not pass periodic improvement tests.  

Barry also provides an informed articulate history and criticism of Canada's failure to provide a national health care scheme to cover autistic children in Canada, a failure made more pronounced by the fact that some other countries have identified autism as national priorities and put programs in place to provide treatment.  

Medicare for Autism Now Interviews Harold Doherty

This is the video of my interview on Medicare for Autism Now! Since that interview a US Federal Court Judge has ordered Florida Medicaid to provide Medicaid coverage of ABA for autism. California has mandated insurers to provide ABA coverage for autism and the US federal government has done the same thing in respect of US federal government employees. Meanwhile back in Canada .... nothing ... or worse. 

The sham autism symposium held after a panic stricken Canadian government cancelled a real national autism symposium in order to screen out and prevent real autism activists from attending has resulted in absolutely no gains for autistic Canadians. Little progress has been made across Canada and in some provinces, like New Brunswick under the current administration, we are actually seeing gains slip away. 

We need a new generation of advocates to step forward and join the fight for autistic children and adults. We need YOU!

adults.

Jean Lewis, Canada's Foremost Autism Advocate, Provides Firsthand History of Canadian Autism Advocacy From an Experienced, Personal Perspective

I strongly encourage anyone with an autistic child or interest in autism services in Canada to watch this video by Jean Lewis, Canada's foremost autism advocate, who has lived and led much of the autism advocacy in Canada over the last decade. 

Jean is extremely well informed, articulate and authentic. She has lived the reality of severe autism and related disorders with her child and she, and her husband Michael, have fought with intelligence and determination to bring services to autistic children and adults in BC and across Canada.

 

Michelle Dawson (2008): Autism Is A Disability, A Neurodevelopmental Disorder

Photo from Nature Magazine, November 2 2011,  Shows High Functioning Autistic, 
Researcher and Anti-ABA Activist* Michelle Dawson and High Functioning 
Autism Expert  and Anti-ABA Activist* Dr. Laurent Mottron

It may seem surprising to some to learn that Michelle Dawson, the central image of the "Autism is an Advantage" campaign of  high functioning autism researcher and anti-ABA activist Dr. Laurent Mottron has herself formally declared that autism is a disability and a neurodevelopmental disorder.

Dr. Mottron and Ms Dawson were featured recently in Nature magazine promoting the autism is an advantage beliefs of Dr. Mottron and Ms Dawson.  Yet,  in another very formal context,  Michelle Dawson has described autism as a disability.  In fact she used her autism disability as the basis for a human rights complaint against her former employer Canada Post**.

In Dawson v. Canada Post Corporation, 2008 CHRT 41 (CanLII) Ms Dawson brought a complaint under the Canadian Human Rights Act against her former employer Canada Post alleging that Canada Post had discriminated against her and harassed her on the basis of her autism disability contrary to the provisions of the Canadian Human Rights Act.  The Human Rights Tribunal found that she had substantiated most of her claims and found that Canada Post had contravened sections 7 and 14 of the Act.

A complaint pursuant to the Canadian Human Rights Act is brought under one of the grounds listed in section 3 of the Act. The Tribunal decision listed the grounds as  race, national or ethnic origin, colour, religion, age, sex, sexual orientation, marital status, family status, disability and conviction for which a pardon has been granted. In Ms Dawson's case she alleged discrimination, harassment and retaliation against her by Canada Post on the basis of disability ... autism ... as set out in several paragraphs of the CHRT decsions:

[2] In her complaint, dated August 9, 2002,  Ms. Dawson alleges that the Respondent discriminated against her on the basis of disability, in breach of section 7 of the Canadian Human Rights Act in that it failed to accommodate her disability (autism).

[86] Ms. Dawson testified that autism is a neurological disability and that people generally do not have a good understanding of this reality.

[90] Ms. Dawson testified that  autistic persons compared to non autistic people process information very differently, at a very basic profound level, really low level.

[95] In her testimony, Ms. Dawson also referred to people with Down Syndrome.  She testified that Down Syndrome is in the  same classification as autism.  They are both developmental disorders or neuro-developmental disabilities.



[220] The Tribunal thus finds that Ms. Dawson’s disability was an important factor in the way she was treated by the Respondent in relation to the above mentioned events and that the  Respondent’s conduct amounts to harassment and contravenes section 14 of the Act.

Contrary to those who assert that autism is an advantage Ms Dawson, as indicated in the CHRT decision,  testified that autistic persons compared to non autistic people process information very differently, at a very basic profound level, really low level.  Ms Dawson also testified about a serious deficit which afflicts many with autism disorders  SIB, or Self Injurious Behavior.  She gave evidence before the tribunal about her own Self Injurious Behavior. I commend Ms Dawson for having the courage to speak openly and honestly about her own very serious autism deficit, her self wounding:


[97]In her testimony, Ms. Dawson spoke about her self-inflicted injuries. Ms. Dawson testified that, at the very worst, there was probably a week or two weeks where two weeks in a row, she would have something, that she would injure herself. She added, however, that this would be rare. According to her, she would self-injure about once a month and never more. She testified that for cuts, it would not be more than one small area affected and not more than one or two cuts, but they would be in the same place. 

A Mysterious Dr. M testified about autism and self injury generally indicating that self-injury is linked to autism. He also talked about having diagnosed Michelle Dawson, having written letters on her behalf and having observed the results of her self injurious behavior:


[103] For Dr. M., the idea of curing autism is meaningless. Violence is absolutely not a problem that is attached to autism. According to Dr. M., what characterizes autism is that the specific part of the brain which is in charge of social activities is broken in an autistic brain. According to Dr. M., self-injury is linked to autism.


[110]Dr. M. testified that, while the ordinary person will become aggressive when anxious, autistic individuals will sometimes self-injure. This is especially the case, according to Dr. M., when an autistic person cannot understand a situation or cannot get an answer to a question. According to Dr. M., self-injury is the most extreme response to a psychological impasse that has no solution. It is a response to a disorganization of the world. It is the way for an autistic person to respond to negative situations whereas non autistic persons will show anger. Dr. M. stated in his testimony that he was aware of Ms. Dawson self-injury behavior. He had seen one of the wounds she had inflicted upon herself. For Dr. M., a self-inflicted injury is a sign of a deep psychological suffering.

[111] According to Dr. M., autistic people will also have a self-injurious behavior when experiencing internal pain of physical or psychological displeasure. So, if an autistic person finds himself or herself in a situation where he or she cannot escape, or experiences a feeling of disorder, he or she may self-injure, such as biting one's arm or hand. Dr. M. added that it is very difficult for a non autistic person to understand this type of behavior.

[130] Dr. M. testified that Ms. Dawson had told him that the injury that she self-inflicted helped her psychologically. For Dr. M., Ms. Dawson had the habit of self-injuring. Dr. M. interpreted these acts of self-injury as a sign of major psychological suffering, a way for autistic individuals to cope with anxiety. He stated in his testimony that he personally saw one of the wounds that Ms. Dawson had inflicted upon herself and stated that the wound was impressive, and would have been impressive for her coworkers.


Dr. Mottron's opinion piece in Nature magazine emphasized what he considers to be the advantages of autism and spent little time discussing the serious deficits that can accompany those with autism disorders.  Even Michelle Dawson described in the CHRT proceeding as intelligent and high functioning can suffer from serious Self Injurious Behavior. This father of a severely autistic young man with profound developmental delays who has engaged in serious self injurious behavior has no doubt that autism is a disability, a neurological disorder.  Especially for those like my son who do not share Ms Dawson's communication and high functioning abilities and intelligence self injurious behavior is a very serous reality, a deficit, not an advantage.


It is unfortunate that Dr. Laurent Mottron who has built a fine reputation for himself conducting studies and writing articles about high functioning autistics, persons with Aspergers and autistic savants, would downplay the serious deficits that accompany autism disorders.  He,  and his colleague Michelle Dawson, have opposed government financing in Canada of ABA treatment for autism, to this date the only solidly evidence based intervention for autism.


Almost annually a naive, autism ignorant mainstream media swallows the Mottron Mantra and paints a picture of autism as something other than what it is ... a disability ...  a serious neurodevelopmental disorder. In doing so Mottron and the MSM do a great disservice to those most severely affected by autism disorders.

*Ms Dawson made representations as an "autistic" to the Supreme Court of Canada in the landmark Auton Case in which the SCC overturned British Columbia Court decisions which had required the BC government to fund ABA treatment for autistic children. Her application to the Court for intervenor status was supported by an affidavit from Dr. Laurent Mottron. In her representations to the Supreme Court Ms Dawson opposed ABA therapy.  See Auton (Guardian ad litem of) v. British Columbia (Attorney General), 2004 SCC 78, [2004] 3 SCR 657, paragraph 5, "Indeed one of the interveners in this appeal, herself an autistic person, argues against the therapy."

**Note: I was an in house labour lawyer with Canada Post in Ontario between 1993 and 1997 but had never heard of Ms Dawson until after my return to private practice in New Brunswick. My son was diagnosed with Autistic Disorder a year after I returned to private practice and I become active in autism advocacy in New Brunswick.  Ms Dawson contacted me by telephone to ask for access to a legal opinion concerning autism which she heard had been provided to the Autism Society New Brunswick of which I was president at the time. 

Medicare's Orphans and The Supreme Court of Canada's Failure to Protect Children with Autism Disorders

On November 1, 2011 the film Medicare's Orphans was released by Medicare for Autism NOW! It is an excellent presentation of the history of the fight for medicare coverage of autism treatment in Canada and includes comments about the Supreme Court of Canada's monumental failure, in the Auton decision,  to ensure that Canadian governments provide coverage for treatment for autism disorders, a serious and disabling condition for many who suffer from it.


Medicare's Orphans. from MedicareForAutismNow on Vimeo.

Following is a reprint of a comment I posted on March 28, 2009 which reviewed the Auton decision in which the Supreme Court of Canada turned their back on our children with autism. 

The comment includes a stinging criticism of the Auton decision in a submission to the United Nations Committee on Economic, Social and Cultural Rights as part of the Committee's 2006 Review of Canada’s Fourth and Fifth Periodic Reports Under the ICESCR (International Covenant on Economic, Social and Cultural Rights) by the CCPI a national committee of  low-income individuals, anti-poverty organizations, researchers, lawyers and advocates for the purpose of assisting poor people in Canada to secure and assert their rights under international law, the  Canadian Charter of Rights and Freedoms ("the Charter"), human rights legislation and other law in Canada.

Saturday, March 28, 2009

Autism in the Courts in Canada - What Auton Means

What did the Supreme Court of Canada decision in Auton mean?

The decision was a stunning setback for autistic children and their families who were trying to help them receive treatment for their autism disorders. In practical terms it meant that parents seeking to compel governments to provide treatment for their children' s autism disorders would have to do so through political action. Canadian courts received a clear direction to show deference to the economic and policy decisions of governments with respect to disadvantaged groups like autistic children. No substantive right to treatment for autism was found to exist unless governments decided to provide the treatment. A complaint of discrimination could not be founded unless government had decided to provide the treatment and then did so in a discriminatory fashion.

The decision of the Supreme Court of British Columbia in Auton v. A.G.B.C., 2001 BCSC 220 (CanLII), upheld on appeal by the British Columbia Court of Appeal, Auton (Guardian of) v. British Columbia (Attorney General), 2002 BCCA 538 (CanLII), had energized autism advocates across Canada. The fact findings and rulings by the Honourable Madam Justice Allan of the Supreme Court of British Columbia were, in my view, consistent with the spirit and intent of the equality provisions of the Charter of Rights and Freedoms that section of Canada's Constitution which is also intended to help fulfill in domestic law Canada's international human rights commitments. Her conclusions about the realities of autism spectrum disorders and the efficacy of Applied Behavior Analysis as a medical treatment have been borne out by the subsequent findings of other bodies, in particular the American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders, 2007. Ultimately the Supreme Court of Canada reversed the decisions of Justice Allen and the British Columbia Court of Appeal and effectively quashed any legal recourse to compel Canadian governments to provide treatment to autistic children.

The Auton decision is one of three cited in the Submission of the Charter Committee on Poverty Issues to the United Nations Committee on Economic, Social and Cultural Rights as part of the Committee's 2006 Review of Canada’s Fourth and Fifth Periodic Reports Under the ICESCR (International Covenant on Economic, Social and Cultural Rights). The CCPI argued that Canada has failed to ensure effective remedies to Covenant rights. Specifically Canada has chosen not to make the Covenant directly enforceable in its courts.

The CCPI analysis of the Auton decision follows in full:

"In the Auton case, the Supreme Court dealt for the first time with the question of whether the right to equality under s.15 of the Charter imposes positive obligations to provide specialized treatment for autistic children. The parents of children with autism argued that that children with autism have unique needs and that a refusal by governments to meet those needs has a discriminatory consequence in terms of fundamental issues of dignity, security and human development. This was really the first case to explicitly challenge the Court to recognize that governments have an obligation to meet the unique needs of a clearly disadvantaged group. As such, it attracted ten governmental interveners – Canada and nine provinces, all of whom argued that the Court should not interfere with governments’ decisions on how to allocate scarce resources in healthcare, and that the right to equality should not be interpreted so broadly as to impose this kind of obligation on governments.

The Chief Justice, writing for a unanimous Court, found no violation of the right to equality. Disregarding the Court’s openness on earlier occasions to a broader paradigm of positive obligations consistent with the right to health and other Covenant rights, McLachlin, C.J. declared that the legislature “is free to target the social programs it wishes to fund as a matter of public policy, provided the benefit itself is not conferred in a discriminatory manner.”50 The Court found that to establish a claim of discrimination, the petitioners would need to show differential treatment in comparison to a comparator group - “a non-disabled person or a person suffering a disability other than a mental disability (here autism) seeking or receiving funding for a non-core therapy important for his or her present and future health, which is emergent and only recently becoming recognized as medically required.”51 Without a comparator, those with unique needs have no protection from inequality of benefits. The Chief Justice simply asserted that “there can be no administrative duty to distribute non-existent benefits equally.”

The Supreme Court was considering, in Auton, really for the first time, the constitutionality of doing nothing to meet the needs of an extremely disadvantaged group in society. It appears to have affirmed, in shocking fashion, the government’s ‘right’ to do nothing. The Court made no reference to international human rights law, and made no effort to interpret the right to equality in a more substantive manner, consistent with this Committee’s General Comment No. 9."

In every day language the Supreme Court of Canada in the Auton decision rendered the equality provisions of the Canadian Charter of Rights and Freedoms, and Canada's commitments under the International Covenant on Economic, Social and Cultural Rights meaningless. The analytic gymnastics performed by the Court amounted to saying that if a group is disadvantaged in a way that can not be readily compared to the treatment afforded a comparative group then it can not even begin to assert a claim pursuant to the equality provisions of the Canadian Charter of Rights and Freedoms. Unless governments grant or recognize a right to specific services by disadvantaged groups Canadian courts will be of no assistance in compelling governments to provide such services.

To paraphrase the CCPI submission the Supreme Court of Canada, in the Auton decision, recognized the constitutionality of government's right to do nothing to help the disadvantaged - in that case autistic children.

FEAT BC Autism Rally Update Friday, November 13

Parents of autistic children and their supporters will rally outside Premier Gordon Campbell’s constituency office this Friday, November the 13th at noon to protest the provincial government’s attempt to begin to dismantle individualized treatment funding and to mark the 5th anniversary of the Supreme Court of Canada’s Auton decision.

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

Louise Witt, board member and spokesperson for FEAT of BC states that “The recent tragic deaths of two Canadian children with autism, killed at the hands of their own parents, are a wake up call. The status quo is putting the health of children and their very lives in jeopardy. At present, no mandate exists to deliver healthcare to children with autism or to enshrine their right to this medically necessary treatment.”

“It’s been five years since the Auton decision was overturned by the Supreme Court of Canada and kids with autism are still being denied their treatment” says Bev Sharpe, one of the founding members of FEAT of BC. “How many more children have to die? It’s long past time for the government to do the morally right and economically sensible thing, which is to provide treatment to these vulnerable children.”

For more information, contact Louise Witt at 778-999-0971 or www.featbc.org

autism

Malcolm Stanley on Autism Treatment: US (Pennsylvania) Trumps Canada (Ontario)

Malcolm Stanley is the father of an autistic child, and a Canadian autism advocate who moved from Ontario to Pennsylvania for economic and business reasons. In an article in the Toronto Star, U.S. can teach us how to care for autistic kids he has compared and contrasted the autism intervention services available for autistic children in Pennsylvania with those available in Ontario. And Ontario comes out on the short end of the stick. Malcolm is a parent autism advocate who is very well informed by family experience and by his involvement in autism advocacy. He knows what he is talking about.

The only criticism I have with his opinion piece is that he generalizes his experience in Pennsylvania to that of the United States as a whole and similarly generalizes from Ontario to all of Canada. From what I have read the situation he has described in Pennsylvania of full autism intervention service provision does not exist in most American states. Canada is in fact a patchwork of autism service provision varying greatly from province to province as Malcolm describes but Ontario, Canada's largest province, and a leader in many areas, has been anything but a leader in provision of autism services.

Despite the above mild criticism Malcolm's comments hit home, Canada which offers government provided medical services, sees fit to exclude autism treatment from the list of medical services provided. Our Supreme Court of Canada, in Auton, ruled that it was OK for government to exclude autism treatment from medical service coverage. The Court effectively ruled that there is no substantive right to medical treatment in Canada and that what medical treatments are provided is a matter for governments to decide.

Malcolm Stanley's comment should be read by all with a serious interest in treating and helping persons with autism disorders overcome their disorders or at least improve to the maximum extent possible. Hopefully someday the federal government, and provincial governments like Ontario, will listen to Malcolm Stanley and the other parents, family members and caregivers who actually care and start providing funded applied behavior analysis for autistic children and adults.

autism

Michelle Dawson's False and Absurd Anti-Parent Rhetoric

I have always been amazed that any one takes seriously the absurd autism rhetoric of Michelle Dawson. She engages in angry rhetoric aimed at the parents who advocate for ABA intervention for their own children. And she is continuing to do do so with her most recent post on her blog site in which she falsely states that ABA advocates in Canada deny the humanity of autistic persons, including their own children. Ms Dawson's latest false and absurd rant can be found on her blog site in Autistic people are persons: An anniversary where she states:

"In ABA-related litigation, autism advocates have used Canada's major human rights laws, including our highest law, the Charter of Rights and Freedoms, to deny the humanity, personhood, equality and human rights of most autistics in Canada.

This wholesale denial and dehumanization is exemplified in the Auton and Wynberg trial decisions. These two decisions have been universally revered and promoted by autism advocates, as representing what autistics deserve.

Autism advocates also universally opposed my intervention in Auton, which sought to inform the Supreme Court of Canada that, contrary to the positions of both sides, autistics are human beings with human rights, and this status should not be denied to most autistics in Canada."

Contrary to Ms Dawson's nonsensical rhetoric Canadian ABA advocates, meaning Canadian parents seeking ABA services for their own autistic children, have never advocated for those services on the basis that their children, or any autistic persons, are not human beings. Ms Dawson has never published a single statement that I have seen where any parent or other ABA advocate, or any party involved in the Auton or Wynberg cases, has ever done so by denying that their children were not human or did not enjoy human rights. To the contrary their claims have been advanced on the basis that their children's basic human rights include the right to treatment for their medical disorders, their autism disorders.

Michelle Dawson also wrongly claims that the CHRT decision in which some of her complaints against Canada Post were accepted, and others dismissed, established that autistic persons were human beings with basic human rights. That is not a correct interpretation of the decision.

In Canada a Court, or a Tribunal, has authority to decide the issues that are properly before it based on the facts and the positions taken by the parties. The issue of whether autistic persons were "persons" with equality before the law, and with basic human rights, was not before the Tribunal in the case of Dawson v Canada Post. What was before the Tribunal were Ms Dawson's allegations that as an employee of Canada Post she had been discriminated against, harassed and suffered retaliation as a result of her disability ... which in her case was her "autism".

All Canadians by definition under our Constitution are persons enjoying equality before the law and basic human rights. Our Charter of Rights and our various Human Rights statutes all recognize the right of every Canadian to enjoy protection against discrimination on a variety of grounds including that of disability, the ground on which Ms Dawson's claim proceeded.

Furthermore, as would be expected, Canada Post did not take, or argue, the absurd position that autistic persons are not persons, or that they do not enjoy basic human rights. Since the matter was not in issue a gratuitous remark by the Tribunal member who decided her case that he agrees that autistic persons are persons does not mean that the decision itself established that autistic persons are persons. It did not have to be decided based on Canadian law or based on the arguments in that specific case. The comment was obiter dicta, outside the scope of what had to be decided in the case.

Michelle Dawson continues to falsely claim that Canadian parents advocating for ABA services for their autistic children are denying their basic humanity. She is wrong and she is doing a disservice to autistic children by interfering with parents' efforts to help their children. It is she who is denying a basic element of the humanity of autistic children ... the right recognized by the United Nations to enjoy the fullest protection and assistance their parents can provide.

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Autism and ABA - A Realistic Picture (Video)

Across North America parents of autistic children continue to fight for ABA services for their autistic children whether it be American parents seeking to have private health insurers provide coverage of ABA treatment or parents in Ontario seeking to have ABA introduced in the school system or get their pre-school children off waiting lists for early ABA intervention. Yet the anti-ABA activists would have you believe that these parents are gullible, stupid people who have been misled by an evil ABA industry into believing that ABA will turn their autistic children into "normal" children.

Very few of the anti-ABA activists ever describe any personal experiences they have had with ABA. (There are exceptions, some determined anti-ABA activists are parents whose children apparently did not receive ABA from competent ABA therapists). Even Michelle Dawson, who intervened in the Supreme Court of Canada proceedings in Auton to offer an "autistic" perspective and to oppose government funding of ABA treatment for other people's autistic children, did not describe any personal experiences that she had with ABA. Nothing I have read in the writings of most anti-ABA activists refers to any personal ABA experiences on which they based their opinions. Nor do their descriptions of ABA reflect any real first hand knowledge of ABA.

The absurd rhetoric of the anti-ABA activists often paints a false picture of ABA as being abusive. Some resort to an old video clip of an aversive (hand slapping) being used in an ABA session to portray ABA as abusive. ( Such commentaries invariably ignore the once widespread use of a particular aversive "the strap" that was once used on ALL school children, including me in Grade 1, when I was strapped for kicking a soccer ball around the classroom during a brief absence by the teacher. I never did it again).

Parents really should ignore the ill informed, prejudiced, anti-ABA activists and check out for themselves how ABA is being provided today to autistic children in their area. I have said many times that my son enjoys receiving ABA. The following video from the NJ Star Ledge site presents a realistic picture of modern, non-aversive, ABA methods being used with an autistic child:

Get Political! Autism Advocacy in Canada and the Marley Message

The British Columbia election is now history and former trial lawyer, political pro, community activist and autism advocate David O Marley was unable to upset powerful Liberal incumbent Ralph Sultan, an engineer and former bank executive, who doubled the votes of all other candidates combined in the riding of West Vancouver-Capilano.

In victory Mr Sultan singled out Marley as someone he had worried about in this election as reported on bclocalnews.com:

At the outset of the campaign, Marley represented a strong contender and possible threat, said Sultan. "He (Marley) was a very experienced backroom political pro."

Marley the political pro had expected incumbent Ralph Sultan to win but emphasized the value of public political participation:

"I'd like to see more people running as independents ... the (political) parties have been hollowed out. People don't see the value of participating (in politics). MLA's are basically reduced to salespeople for their parties."

This parent of an autistic child is sensitive to Marley's message. The legal process from Auton to Deskin-Wynberg did not achieve anything directly for autistic children. But those cases were fuel for powerful autism advocacy movements in many Canadian provinces. We may not all choose to run as Independents in party dominated Canadian politics. This is one autism Dad who has not gone that route (and would probably get a serious shellacking if I did). BUT we have to participate, we have to play hard and smart in the political arena to influence those who do run and get elected.

In the Auton case the Supreme Court of Canada delivered a clear message. Beyond the overly refined legal analysis of the decision (the SCC essentially held that Canadians enjoy no independent, substantive Constitutional right to necessary medical treatment) it is clear that our Canadian Constitution, our Charter of Rights, our courts will be of little assistance in obtaining autism specific treatment, education and residential care for our autistic loved ones. The lesson from Auton was that parents have to get political to help their autistic children live as decent, full and meaningful a life as they can.

Find out what your party candidates and representatives in your ridings, federal and provincial are saying, or not saying, about autism issues and try to influence them, try to push them in the right direction. Use the media, letters to the editor, YouTube and the Internet. Use what is available to influence the political process for autistic children and adults.

Get political!

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Autism Advocacy? Anti-ABA Activist Michelle Dawson at the Supreme Court of Canada

Elizabeth Svoboda, like Erin Anderssen before her, has received criticism from Michelle Dawson, for daring to characterize her activities in ways that Ms Dawson, an outspoken public figure, does not approve of. Her letter reacting to the Svoboda article about the Neurodiversity movement in Salon.com contains a number of points of disagreement including her role as a crusader and, in particular, her role before the Supreme Court of Canada in Auton where she intervened as an "autistic" a person with an unspecified Autism Spectrum Disorder.

I actually agree with Ms Dawson that it is inaccurate to state that she personally:

"convinced the Canadian Supreme Court to overturn an appeal that would have provided state funding for ABA therapy."

Apart from the Appellant British Columbia government a number of provincial governments intervened seeking to have the Supreme Court of Canada reverse the lower court orders directing the BC governement to fund Early Intensive Behavioral Intervention (ABA). The Supreme Court of Canada agreed with the various governments' arguments which were essentially based on the premise that it was the role of legislatures, not the courts, to decide what treatments should be considered medically necessary for what disorders. According to the governments' submissions the absence of evidence that the autistic children involved in the case had been discriminated against with respect to the provision of services determined by the legislature to be medically necessary the Courts erred in intervening under the equality and non-discrimination provisions of the Charter of Rights and Freedoms to order funding of EIBI (ABA) for autistic children.

While I agree that Ms Dawson's role in Auton was probably not determinative, I do agree with Ms Svoboda that Ms Dawson is, and has been, a "crusader" or activist. Ms. Svoboda refers to her as an "autistic-rights" crusader. Ms Dawson was in fact before the Supreme Court of Canada, not just to "provide information to the court that it did not already have" as she claims in her letter to Ms Svoboda. In Auton Michelle Dawson was there as an anti-ABA activist opposing ABA for autistic children. In that proceeding she opposed the parents' request that the SCC uphold the lower courts' Orders directing the BC government to fund EIBI (ABA) for autistic children.

In Auton, The Orders of the Supreme Court of British Columbia and of the British Columbia Court of Appeal directed the BC government to fund early intensive behavioural therapy for children with autism or autism spectrum disorder. Failure to do so constituted a breach of the childrens' rights under s. 15(1) of the Charter. Ms Dawson, in the interveners factum filed on her behalf, and available online, expressly opposed the request of the autism parents involved to uphold those orders by asking the SCC to reject the premise of those Orders which were the findings by the lower courts that the refusal by the BC government to fund EIBI (ABA) treatment for autism infringed s. 15(1) of the Charter:

80.
The following orders are requested:

That the Respondents’ request to uphold the British Columbia Court of Appeal finding of an infringement of s.15(1) in the particular circumstances of this case be denied.

In the argument portion of her factum Ms Dawson takes issue with the science demonstrating the effectivness of ABA. She clearly opposed ABA in the proceedings on that basis contrary to the views of credible agencies which had reviewed the scientific literature on the effectiveness of ABA and contrary to the expert witnesses in the case, including the BC government's expert witness. She also opposed ABA on the grounds that, in her not so humble opinion, the practice of ABA was unethical because it could extinguish autistic behaviors and because "autistics' were not involved in the practice.

Ms Dawson had also expressly stated her opposition to ABA in the Notice of Application filed on her behalf in which she sought leave to intervene in the Auton proceedings:

5. The applicant is concerned that the judgments of the court below appear to endorse the principle that a particular type of treatment (Applied Behaviour Analysis) constitutes a medically necessary treatment for autistic individuals such that the failure of parents to provide that treatment or the failure of autistic individuals to seek that treatment could constitute a deprivation of basic medically necessary principles;

The Supreme Court of Canada summarized Michelle Dawson's position in Auton succinctly in paragraph 5 of that Court's decision:

"While increasingly accepted, Applied Behavioural Analysis (“ABA”) or Intensive Behavioural Intervention (“IBI”) therapy is not uncontroversial. Objections range from its reliance in its early years on crude and arguably painful stimuli, to its goal of changing the child’s mind and personality. Indeed one of the interveners in this appeal, herself an autistic person, argues against the therapy."

Ms Dawson, like anyone, can reasonably disagree on subjects of public interest. It is not reasonable though for her to contend that she has not been a "crusader" or activist. She has been very active in a number of forums offering her view of what it means to be an "autistic". She has publicly opposed ABA treatment for autistic children on what she considers to be scientific and ethical grounds before the Supreme Court of Canada and the Canadian Senate.

Michelle Dawson may prefer now to be known solely as a researcher but she has been, and remains, an activist with her own ideological, and sometimes political, agenda. That agenda is one which includes opposition to ABA treatment of other people's autistic children notwithstanding the desires of the childrens parents that they receive such treatment and notwithstanding the opinions of a number of credible authorities that ABA is solidly evidence based and supported in its effectiveness at reducing self injurious behaviors in autistic children and helping them to acquire specific intellectual, social and communication skills.

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Autism in the Courts in Canada - What Auton Means

What did the Supreme Court of Canada decision in Auton mean?

The decision was a stunning setback for autistic children and their families who were trying to help them receive treatment for their autism disorders. In practical terms it meant that parents seeking to compel governments to provide treatment for their children' s autism disorders would have to do so through political action. Canadian courts received a clear direction to show deference to the economic and policy decisions of governments with respect to disadvantaged groups like autistic children. No substantive right to treatment for autism was found to exist unless governments decided to provide the treatment. A complaint of discrimination could not be founded unless government had decided to provide the treatment and then did so in a discriminatory fashion.

The decision of the Supreme Court of British Columbia in Auton v. A.G.B.C., 2001 BCSC 220 (CanLII), upheld on appeal by the British Columbia Court of Appeal, Auton (Guardian of) v. British Columbia (Attorney General), 2002 BCCA 538 (CanLII), had energized autism advocates across Canada. The fact findings and rulings by the Honourable Madam Justice Allan of the Supreme Court of British Columbia were, in my view, consistent with the spirit and intent of the equality provisions of the Charter of Rights and Freedoms that section of Canada's Constitution which is also intended to help fulfill in domestic law Canada's international human rights commitments. Her conclusions about the realities of autism spectrum disorders and the efficacy of Applied Behavior Analysis as a medical treatment have been borne out by the subsequent findings of other bodies, in particular the American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders, 2007. Ultimately the Supreme Court of Canada reversed the decisions of Justice Allen and the British Columbia Court of Appeal and effectively quashed any legal recourse to compel Canadian governments to provide treatment to autistic children.

The Auton decision is one of three cited in the Submission of the Charter Committee on Poverty Issues to the United Nations Committee on Economic, Social and Cultural Rights as part of the Committee's 2006 Review of Canada’s Fourth and Fifth Periodic Reports Under the ICESCR (International Covenant on Economic, Social and Cultural Rights). The CCPI argued that Canada has failed to ensure effective remedies to Covenant rights. Specifically Canada has chosen not to make the Covenant directly enforceable in its courts.

The CCPI analysis of the Auton decision follows in full:

In the Auton case, the Supreme Court dealt for the first time with the question of whether the right to equality under s.15 of the Charter imposes positive obligations to provide specialized treatment for autistic children. The parents of children with autism argued that that children with autism have unique needs and that a refusal by governments to meet those needs has a discriminatory consequence in terms of fundamental issues of dignity, security and human development. This was really the first case to explicitly challenge the Court to recognize that governments have an obligation to meet the unique needs of a clearly disadvantaged group. As such, it attracted ten governmental interveners – Canada and nine provinces, all of whom argued that the Court should not interfere with governments’ decisions on how to allocate scarce resources in healthcare, and that the right to equality should not be interpreted so broadly as to impose this kind of obligation on governments.

The Chief Justice, writing for a unanimous Court, found no violation of the right to equality. Disregarding the Court’s openness on earlier occasions to a broader paradigm of positive obligations consistent with the right to health and other Covenant rights, McLachlin, C.J. declared that the legislature “is free to target the social programs it wishes to fund as a matter of public policy, provided the benefit itself is not conferred in a discriminatory manner.”50 The Court found that to establish a claim of discrimination, the petitioners would need to show differential treatment in comparison to a comparator group - “a non-disabled person or a person suffering a disability other than a mental disability (here autism) seeking or receiving funding for a non-core therapy important for his or her present and future health, which is emergent and only recently becoming recognized as medically required.”51 Without a comparator, those with unique needs have no protection from inequality of benefits. The Chief Justice simply asserted that “there can be no administrative duty to distribute non-existent benefits equally.”

The Supreme Court was considering, in Auton, really for the first time, the constitutionality of doing nothing to meet the needs of an extremely disadvantaged group in society. It appears to have affirmed, in shocking fashion, the government’s ‘right’ to do nothing. The Court made no reference to international human rights law, and made no effort to interpret the right to equality in a more substantive manner, consistent with this Committee’s General Comment No. 9.

In every day language the Supreme Court of Canada in the Auton decision rendered the equality provisions of the Canadian Charter of Rights and Freedoms, and Canada's commitments under the International Covenant on Economic, Social and Cultural Rights meaningless. The analytic gymnastics performed by the Court amounted to saying that if a group is disadvantaged in a way that can not be readily compared to the treatment afforded a comparative group then it can not even begin to assert a claim pursuant to the equality provisions of the Canadian Charter of Rights and Freedoms. Unless governments grant or recognize a right to specific services by disadvantaged groups Canadian courts will be of no assistance in compelling governments to provide such services.

To paraphrase the CCPI submission the Supreme Court of Canada, in the Auton decision, recognized the constitutionality of government's right to do nothing to help the disadvantaged - in that case autistic children.

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