Showing posts with label Auton. Show all posts

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. 

















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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.  


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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.

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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.

 

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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

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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


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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