Saturday, April 30, 2011

Autism Ignorance: Conservative James Moore Says Autism Is Not a Disability

UPDATE: NDP Candidate Mark Ireland who was present at the forum has twice CONFIRMED in a message below that James Moore stated that autism is not a disability.  Mr. Ireland also confirmed that Moore made the statement in a twitter discussion with Ben Brisebois that I have posted on Facing Autism in NB.

Conservative candidate James Moore was asked at Riverside Secondary All Candidates Meeting  in the  BC riding of  Port Moody–Westwood–Port Coquitlam whether he would support legislation to amend the Canada Health Act to include autism treatment (ABA/IBI) under Medicare.  

His reply, as reported at Medicare for Autism NOW,  demonstrated Mr. Moore's fundamental ignorance of autism disorders:

"No, autism is not a disability and The Canada Health Act is not for Special interest Groups."

Mr. Moore obviously knows nothing about autism disorders when he states that autism is not a disability.  He might want to visit web sites of agencies such as the Centers for Disease Control and Prevention or the Interagency Autism Coordinating Committee in the US.  Or he could talk to officials at the Canada Revenue Agency who do consider autism a disability for Disability Tax Credit pruposes and specifically mention autism at page 7 of document  RC4064(ERev. 10  Medical and Disability-Related Information.    

As to why James Moore would define persons with autism as a special interest group or why the Canada Health act does not apply to them his brief dismissal of this serious issue provides no illumination. 

Friday, April 29, 2011

Autism in Election 2011? Vote Liberal ... OR ... Vote NDP

On Monday Canadians will cast their votes in Election 2011.  IF autism is a major concern in your life or the life of a family member I ask you to consider voting for either the Liberal OR the NDP candidate in your riding.

I make this request because the Conservative Party has consistently opposed any substantive role for the federal government in addressing Canada's national autism crisis. Some Liberal and some NDP  party members have made statements in support of either official inclusion of autism in Medicare or programs and legislation aimed at working with the provinces to ensure that autistic Canadians participate fully in our health care system and receive treatment for autism regardless of where they live in Canada. Strong autism motions have been brought forth previously by Liberal MP Shawn Murphy and by NDP MP Glenn Thibeault. Both motions were supported by members of the Liberal and NDP but were defeated by the Conservative-Bloc Quebecois coalition.

If the Liberal candidate in your riding is the best bet  to defeat the Conservative candidate then please vote Liberal.  If the NDP candidate in your riding is the best bet then please vote NDP.  Vote autism on Monday, vote Liberal or NDP in your riding.

Wednesday, April 27, 2011

Canadian Autism Shame: Canada Bars Autistic Teen From Permanent Resident Status

Canada has, to its shame and dishonor,  refused to include evidence based effective treatment for autism in the universal Medicare, our public national health care scheme,  that it offers to all Canadians thereby excluding  1 in 110 autistic Canadian children from receiving a fundamental benefit of our society.   Now it has extended that shameful treatment to autistic citizens of other nations, and even some of his family members, who would like to visit and reside in Canada.  

As Hugh Adami reports in the Ottawa Citizen:

"What Canadian immigration has done to an English teenager and his parents is cruel, embarrassing and hypocritical. The federal government has barred 17-year-old Lewis Crowe, who lives with his mother in England, from living in Canada because he has autism. Furthermore, he cannot visit the country without the permission of the immigration department. Stranger still is his father and stepmother, Robert and Pauline Crowe, are "inadmissible" as permanent residents because of Lewis's disability."

As a Canadian I am proud of my country which I believe is the best country on earth in which to live.  As the father of a teen aged son with severe Autistic Disorder though I believe that Canada has behaved shamefully in treating autistic Canadians as second class citizens by excluding Autism treatment from inclusion in Medicare. Now Canada has extended that shameful treatment to autistic persons and their families from other countries who would like to visit and reside in our otherwise wonderful country.  
Shame Canada, shame on us. 

Monday, April 25, 2011

High Intelligence Is Not a "Common Characteristic" of a Child with Autism

An article by Jennifer Luchesi Long at Carlsbad Patch makes the following statement about children with autism:

The following are some of the common characteristics of a child with autism:

Easy irritability with changes in routine and expectations.
Difficulty reading facial expressions.
Difficulty reading social cues and understanding social norms.
Poor eye contact.
Uncomfortable with affection, including any kind of physical touches.
Overstimulated by noises, smells and light.
Fixation on a certain subject, topic or idea.
Highly intelligent.

(Underlining added for emphasis)

No references are provided for the author's assertion that high intelligence is a common characteristic of children with autism. The claim that high intelligence is a "common characteristic" of autism is a misrepresentation of autism disorders which include Asperger's Disorder, PDD-NOS and Autistic Disorder.

Some persons with Asperger's Disorder are highly intelligent, others with Asperger's are of average intelligence.  By diagnostic definition there is no cognitive impairment in persons with Asperger's. There are also some persons with high functioning autism who are highly intelligent.

With respect to Autistic Disorder and  PDD-NOS the Canadian Psychological Association stated in a 2006 brief to a Canadian Senate committee that 80% of persons with these two autism spectrum disorders have intellectual disabilities.  That information is consistent with United States Centers for Disease Control and Prevention surveys which indicate that between 41 and 44% of persons on the entire spectrum have intellectual disabilities. These figures contradict the claim that high intelligence is a common characteristic of children with autism.

"Autism" has become, in the public mind, the autism of a few very high functioning persons with Asperger's and high functioning autism some of whom are prominent in the mainstream media.  The realities of those with severe autistic disorders are  increasingly obscured by these success stories. There are many low functioning autistic persons living in dependent care who do not have movies made about them, do not play in rock bands and run successful businesses, do not have families of their own and do not build careers as public speakers telling the public  what "autism" is. Some autistic children and adults do not understand the risks posed by daily life phenomenon such as automobile traffic or backyard swimming pools.

The romanticization of autism  impairs public understanding of this serious neurological disorder.

Sunday, April 24, 2011

Discrimination by Any Other Name: Severe Autism Services and Resources Lacking, Severe Autism Research is Sparse

I have not been a big fan of the New York Times coverage of autism issues.  Specifically the NYT has downplayed  the seriousness of autism disorders. It has also downplayed the evidence based effectiveness of Applied Behavior Analysis as an autism intervention while promoting non evidence based interventions like Floortime. It comes as a pleasant surprise to read a recent NYT autism  feature in which experts, Dr. Fred Volkmar of the Yale Child Study Center and Dr. Lisa Wiesner, actually provided some unvarnished, truthful statements about severe, Low Functioning, autism realities even if that information was hidden under the feel good, High Functioning Autism focused title College-Bound and Living With Autism:

"Unfortunately not every child gets better. Sometimes the outcome seems to relate to the severity of the autism in childhood. Individuals whose disability is more profound continue, as adults, to need considerable support and help. It is unfortunately the case that for this population, services are often minimal, research is sparse and resources are lacking. The federal government has identified this as a priority area in autism work, and rightly so.

But even when we are fairly optimistic about an individual child, he or she may not do well as an adult. This is one of the reasons those of us who have been in the field for a long time are very careful about predicting the future to parents. We can only talk, in general, about what on average are good or bad prognostic factors."

( Underlining added for the benefit of those who like to "Counter" any mention of severe autism realities)

The lack of services and resources for the severely autistic is a particularly offensive form of discrimination which sees those most in need of services receive the least help from society. The exclusion of low functioning autistic persons from autism services and resources stinks whatever the excuse offered.

The exclusion of severely autistic subjects from "autism" research is something I have previously noted.  The spate of recent fMRI studies mapping the alleged "autistic brain" have in fact been restricted to subjects with High Functioning Autism only. 

It is very encouraging to see this frank acknowledgement by two autism experts in the New York Times of the shortchanging of low functioning autistic persons that has been taking place.

It is most encouraging to read that the US federal government has identified severe autism research as a high priority  area in autism work.  

Liberal and NDP Autism Advocates in Election 2011

Glenn Thibeault            Peter Stoffer           Ruby Dhalla           Brian Murphy

Although our federal government has done very little to help autistic Canadians receive effective evidence based early behavioural intervention, autism specific education and accommodation or decent residential care for autistic adults it is not for lack of trying by several members of parliament who are running again in Election 2011.   Peter Stoffer,  a Nova Scotia (Sackville-Eastern Shore) NDP candidate,  has been involved in national autism advocacy for many years and co-sponsored, with former Fredericton MP Andy Scott, a motion seeking to implement a national autism strategy.  Glenn Thibeault an NDP candidate from Sudbury Ontario also brought a private members motion in support of autism.  During debates in the House of Commons  both New Brunswick (Moncton)  Liberal candidate Brian Murphy and Ontario (Brampton-Springdale) Liberal candidate Ruby Dhalla gave strong speeches on behalf of autistic Canadians. 

This autism dad and advocate hopes that all of these strong autism advocates are re-elected on May 2. 

Thursday, April 21, 2011

Quebec Autism Experts (Mottron Excluded) Support Early Intensive Behavioral Intervention

In Quebec a number of Quebec based autism research and treatment organizations have spoken up and defended ABA based EIBI against attacks on the treatment based on the beliefs of high functioning autism expert  Dr. Laurent Mottron.  Dr. Mottron has involved himself in a long media, political and legal campaign to prevent autistic children from receiving ABA or EIBI autism interventions.  Dr. Mottron has been intensely involved with the anti ABA career of Michelle Dawson who appeared, with Mottron's expert affidavit support, as an "autistic" before the Supreme Court of Canada in the Auton case.  He also testified as an unidentified autism expert in Michelle Dawson's Canadian Human Rights Tribunal case with Canada Post Corporation. The  anti-ABA duo have received coverage from CBC, Radio Canada and Quebec based publications.   Fortunately for autistic children in Quebec the Quebec government itself  has not been swayed by  Mottron and Dawson's anti ABA beliefs and has, along with most North American jurisdictions,  accepted ABA as the most evidence based intervention for autistic children.

In 2007, the Standing Senate Committee on Social Affairs, Science and Technology completed a study concerning the financing of autism treatment in Canada. The report, entitled ‘Pay Now or Pay Later,’ stated that treatment for autism is higher later in life if a child is not treated at an early stage. In Quebec, with families signed up for numerous waiting lists for more than a few years each, a child could be older than five by the time EIBI treatment is available to them — past the age of optimal early intervention.
Controversy over EIBI

EIBI is not without its critics, however. A series of articles published in La Presse questioned the effectiveness of the treatment. Quoting Doctor Laurent Mottron, lead researcher at University of Montreal's Centre for Excellence in Pervasive Development Disorders, the articles stated that research into EIBI is “scientifically weak.”
In response to the articles, researchers from UQAM as well as autism organizations which include Abe Gold Research and Learning Centre, WMRC and the Clinique d’Approche Behaviorale en Autisme, amongst others, published an open letter.
“Quebec did not make a unique or controversial decision when it chose to propose (EIBI) for children under six: they were following the lead of Ontario, Alberta and the majority of Canadian provinces and US states,” wrote lead authors Nathalie Poirier and Catherine des Rivières-Pigeon from UQAM. “(EIBI) is simply the standard method of treatment for intensive early intervention because its efficacy has been scientifically supported.”

The Suburban also reports that a dozen Quebec based autism experts have written a joint letter speaking out in support of EIBI as an autism treatment and criticized a series of articles in La Presse based on the opinions of one autism expert, and several self appointed experts, which had attempted to disparage behavioral intervention as an autism treatment:

“What these articles looked at was really a very limited group of people that have a different opinion,” says one of the letter’s signatories, Dr. Katherine Moxness, director of professional services at the West Montreal Readaptation Centre (WMRC) and associate professor in educational and counselling psychology at McGill University.

“But that difference of opinion was not supported with scientific literature; all it does is lay doubt and it brings Quebec back in time to debating over the approach rather than looking at how we are going to get children into service faster and provide them the services that they need. Nowhere else in North America is the approach put in question.”

The letter also claimed the La Presse articles took their lead from one autism specialist and a small group of self-proclaimed experts who question the evidence and wonder who profits from offering therapies; were “based on isolated cases, unfounded statements and even misrepresentation of sources,” and denounced them as giving an “inaccurate and misleading view of the reality and benefits of EIBI,” known as intervention comportementale intensive (ICI) in French.

EIBI — which was adopted by Quebec’s health ministry in 2003 — has for years been the standard treatment for autism across North America and is based on Applied Behaviour Analysis (ABA). It consists of intensive, one-on-one therapy that aims to develop the child’s skills in communication, language, play, social interaction, and so on.

The WMRC, a rehabilitation centre for people with an intellectual disability or pervasive developmental disorder, was one of the first centres in Quebec to develop an EIBI program and, since 2004, annually treats more than 100 children under the age of six who have autism spectrum disorder (ASD). “It’s really a teaching strategy that breaks down all the steps in learning across different development stages and it ensures that the child has the prerequisites to go into kindergarten,” Moxness explains.


Moxness also believes that the language issue may be keeping Quebec behind the rest of North America on EIBI because there is no French-language data on EIBI from a Quebec-based population. As a result, the EIBI community is constantly forced to defend the therapy. “It doesn’t move us forward,” she says.

“Quebec made a choice on a scientifically-supported approach for children with autism that is coherent with the rest of North America. Until there is a better approach that is scientifically-supported with good evidence-based data, it should not have a question mark.”

Wednesday, April 20, 2011

Autism Reality: Autism Is A Disorder

Bruise from injury suffered trying to prevent my son from injuring himself

There are few mainstream media outlets that provide reality based accounts of autism.  Feel good stories and Rain Main stereotypes abound.  I have tried to present a reality based picture of autism disorders including emphasizing the fact that Autistic Disorder and the other PDD's now referred to as Autism Spectrum Disorder are exactly that ... disorders. I was pleased to be interviewed recently as part of a brief article by the National Post which tried to at least dispel some of the myths about autism a disorder which interferes with the everyday life of those who suffer from it.

Autism is a disorder which impairs daily functioning abilities of autistic persons. If a person does not suffer any substantial impairment or limitation in their daily functioning abilities they should not be referred to as autistic, they should not call themselves "auties" or "autistics" and they should not misrepresent themselves to the world as being entitled to speak on behalf of persons with autism disorders, particularly those with severe autistic disorder.  Parents of autistic children face enough challenges without having to deal with myths generated by those who have no real knowledge of what it means to be severely autistic. 

In   Wellbeing: Tuning in to the realities of autism  Melissa Leong  and the National Post interview Suzanne Lanthier of Autism Speaks Canada about some of the myths generated about  autism disorders and the Rain Man stereotype which still dominate mainstream media autism accounts. It would take a series of lengthy, in depth analysis to cover all autism myths adequately. This short article only highlights briefly some of the myths but it does attempt to speak to some of  the realities of autism disorders.   Ms Leong interviewed me for the article and includes my  brief account of my son's  mid January, middle of the night, meltdown where he bit me on the bicep while I tried to grab his arm to prevent himself from hitting himself in the face and head.

My son Conor is a smiling, happy boy who is a lot of fun to be with ...  in him I find great joy  .... but not in his autistic disorder .... not in the disorder which limits his life, and occasionally causes him to injure himself and, even more rarely, those who love him.

Autism is a disorder and its harsher realities are not pretty.

Monday, April 18, 2011

Fredericton Election 2011 Candidates Autism Tweet Replies

 Legislature, Fredericton, New Brunswick 

A. I tweeted the following question to the 4 Election 2011 party candidates in the Fredericton NB riding:
“Will U support inclusion of #autism treatment in #medicare?”
B. The tweeted responses:
NDP – Jesse Travis: I will support the inclusion of treatment in Medicare, it’s the right thing to do
Green – Louise Comeau: platform not specific but believe we would support.
Liberal – Randy McKeen: While healthcare is a provincial responsibility, the federal govt has a vital role to play on #autism. we bring prov together, set goals & find innovative ways 2 deliver services. #Autism should b part of that. Committed to continuing to increase healthcare transfer funding to provinces by 6% after 2014 And we’ll implement an early child learn strategy that will put specialized care towards children w #autism
Conservative – Keith Ashfield:Respecting fed/prov Healthcare jurisdictions, we hve ^ Transfers to the provinces by 30% + committed to ^s at same rate 1/3
we invested $26M in autism knowledge research + Public Health Agency is working w Provs to identify needs. 2/3
my #cpc colleague, who’s son has autism, helps bring the needs of families with autistic children to the forefront 3/3

Saturday, April 16, 2011

Conor Enjoys Wearing His Hoodie On A Chilly Morning Walk with Mom and Dad

It was a cool brisk morning when Conor headed out for a walk with Mom and Dad today.  Conor was quite happy to wear his hoodie under his jacket ... with the hood up most of the time.

Wednesday, April 13, 2011

Child With Autism Removed From BC School Which Lacked Autism Trained Staff

The Vancouver Sun reports that a six year old child with an autism disorder, that's right six years old, was removed from a Langley, British Columbia school after a Worksafe BC investigation agreed with a complaint by staff who refused to work at the school because of the danger posed by the six year old autistic boy.  The article points out that the staff at the school who refused to work with the young child have no training in something called "the Crisis Response Plan Protocol".  The WSBC report also quoted a Langley area Teacher Association President who commented on the lack of adequate "special education" training for teachers.

No one referenced in the article speaks of the need to have teachers and aides with autism specific training working with autistic school children.  Here in New Brunswick autism specific  training of Resource Teachers and Aides, through the UNB-CEL Autism Intervention Training Program  has taken place over the last 6 years with great benefit to many autistic school children, including my son.  The UNB-CEL program has received recognition from such sources as David Celiberti, Ph.D., BCBA, President of the Association for Science in Autism Treatment and Eric V. Larsson, Ph.D, LP, BCBA  Executive Director of Clinical Services at the Lovaas Institute Midwest.  

Unfortunately not all districts and schools educating autistic children have been interested in having autism trained teachers and aides working with autistic children.  Here in New Brunswick we still have autistic children being sent home from schools because school staff are not properly trained in how to educate and management the behavioral challenges of autistic children.  The problem has been compounded in New Brunswick by the extreme inclusion views of Gordon Porter, currently a special adviser to Education Minister Jody Carr, and the architect of New Brunswick's extreme inclusion model which forcefully encourages all children to be dumped in the mainstream classroom whether or not it is in their best interests to do so.

Autism disorders are neurological disorders which are still not taken seriously by some educators including, apparently, those in BC, and of course New Brunswick's own Gordon Porter. The best interests of autistic children are simply not always on the agenda for cost cutting school administrators or ideologues who believe that only they understand what is best for all school children.

Provide credible autism specific training for those who work with autistic children? Accommodate them, if the best interests of the specific child require a quieter learning environment for all or parts of the school day? Heaven forbid.

Far easier to blame the autistic child, keep him or her out of school, and forget about the child's best interests.

Monday, April 11, 2011

Election 2011: Medicare for Autism Now! for Autism and Medicare Coverage

If you are concerned about autism treatment and services in Canada I recommend the Medicare for Autism Now! site as your first information gathering stop about autism and medicare. During this election MFAN is the best site to find  information about autism and medicare in Canada. The MFAN site  provides important information about how to advocate for medicare coverage of autism during Election 2011.   

The major media and experts in Canada have done little beyond telling Canadians that we don't really want an election, that for some bizarre reasons unknown to me Canadians are concerned about a coalition government or whatever trick the Harper Party is using to occupy an easily distracted mainstream media.  What the media doesn't often mention, if at all, are the social issues that make Canadian society a decent place in which to live including our national medicare system which Stephen Harper has long opposed.  With a minority government Harper could only play defense, refusing to address serious national health issues like ... autism.  If Stephen Harper wins a majority government look for our national healthcare system to be dismantled.   The increasingly Harper Blue  CBC has commented on the issue of health care on its web site in a dismissive, superficial manner, but has provided no serious analysis and does not acknowledge the Harper Party contempt for a strong federal healthcare system.

Canada's national autism crisis has grown under the Harper government with a postponed, then rigged, sham national autism symposium and little in the way of real autism awareness.  If your only source of information about autism spectrum disorders was the Harper government you would be seriously ignorant about the realities of autism disorders, the lives restricted by autism or even the fact that Canadians with autistic children who  can choose move to provinces where some autism services are available.  New Brunswick, thanks to a strong parent advocacy movement and some conscientious political leadership from both the Conservative government of Bernard Lord and the Liberal government of Shawn Graham, has a better early autism intervention service than most Canadian provinces.  For that reason some military families with autistic children have requested postings to CFB Gagetown, New Brunswick. Autism is very much a national issue in Canada and the "see no autism, hear no autism, speak no autism" policy of the Harper government can't change that autism reality.

Given the lack of serious media attention  to health care and other social issues during #elxn41 the internet, blogs, Facebook, twitter and other social media are the major source  of discussion of medicare and specific health issues like autism.  This blog will attempt to provide some information and commentary to help.  The best site to follow autism and medicare issues though will be the revamped Medicare for Autism Now! site. 

Sunday, April 10, 2011

#elxn41 Autism Request

My #elxn41 autism request is  a request to the Canadian electorate.  Please listen to Senator, and long time autism advocate, Jim Munson  about the need for action on behalf of autistic Canadians who deserve better, who deserve national treatment standards. and who deserve effective treatment regardless of where they live in Canada.

Take action, during this election, to vote for a candidate who will support autistic children and adults in Canada by voting for a candidate who will support a bill to expressly and specifically include autism spectrum disorders, soon to be grouped together and  known, in the DSM5,  as Autistic Disorder, in the Canada Health Act or in a federal Act specifically dedicated toward dealing with Canada's national autism crisis.

As Senator Munson said in an Ottawa Citizen article, Autistic Canadians deserve better,  published on April 2, World Autism Awareness Day:

"In 2007, the Standing Senate Committee on Social Affairs, Science and Technology released a report titled "Pay Now or Pay Later -Autism Families in Crisis," a comprehensive study of autism issues. As a Senator who initiated the study and a member of that committee, I heard heartwrenching testimony from parents so desperate to get help for their autistic children.

Many had uprooted their lives and moved to places where care options were significantly better than what they could access in their own home province.

Two recommendations from the report that I consider most crucial are national standards for treatment and research, and a national strategy for equal treatment and services across the country. Courageous actions are now needed to deal with this emerging crisis.

It isn't much to ask that a federal minister sit down with provincial counterparts and representatives from autism organizations to devise a better way to operate. It is time for federal politicians to take a leadership role.

Such courage would rouse this nation and render much-needed comfort to the thousands of Canadians affected by autism.

Friday, April 08, 2011

Laurent Mottron's Dangerous Anti Autism Cure Beliefs Resurface

Dr. Laurent Mottron has spent his entire career studying persons with high functioning autism and Aspergers.   Even as the parents of autistic children and good hearted people everywhere feel sadness and grief over the loss of another autistic child presumed lost Dr. Mottron promotes and oversells a study he led which according, to the good Doctor, supports his belief that autism should not be cured.

I have been unable, in the several years that I have been aware of his anti autism cure ideology,  to find any indication that Dr. Mottron has spent any time working with, or studying, those severely affected by autism disorders, whether they be the 75-80% of persons with Autistic Disorder and Intellectual Disability, those who engage in debilitating and dangerous self injurious behavior or those who wander from home and caregivers to danger, and sometimes, death.  The loss last year of James DeLorey in a snow storm, the Australian child who wandered from home into automobile traffic, the still ongoing tragedy  but now presumed death, of Adam Benhamma near Montreal, will have no impact on the entrenched "autism is beautiful beliefs" of Dr. Laurent Mottron. 

I admit straight up that I personally do not subscribe to Laurent Mottron's anti autism cure ideology and do not trust any study by him  like the one now being touted, which he led, concerning "autistic" brains.  I would ask the professionals who actually work trying to help autistic children lead  fuller lives, including those who actually work with autistic children with severe autism disorders, to analyze carefully and critically Dr. Mottron's new study.  I will be very surprised if the "autistic" brain Dr. Mottron reports on is anything other than a snapshot of some of the very high functioning autistic subjects he has worked with for decades to the exclusion of  severely affected, intellectually challenged persons with autism disorders.

Dr. Laurent Mottron is not just a researcher who has devoted decades to studying high functioning autistic persons.  He has also removed himself from the realm of scientific detachment and objectivity and  involved himself in Canada's legal system in an effort to prevent medicare coverage of ABA treatment for autistic children in British Columbia in the Auton case Auton (Guardian  ad litem  of)  v. British Columbia (Attorney General), [2004] 3 S.C.R. 657, 2004 SCC 78  case.  In Auton  Mottron helped launch the career of high functioning autism researcher and anti ABA advocate Michelle Dawson  with his affidavit in support of her intervention, as an "autistic", before the Supreme Court of Canada.   In his supporting affidavit the good Doctor solemnly declared and affirmed the following statement of expert opinion:

Ms. Dawson has a tremendous understanding of both the difficulties faced by autistic individuals in our society, as well as the tremendous inherent strengths of many of these individuals. 

Personally I have never seen Michelle Dawson make any statement that reflects any understanding, let alone a "tremendous" understanding of the difficulties faced by autistic individuals in Canadian society.  I have never seen or heard statements by her acknowledging the existence of the many persons with Autistic Disorder and Intellectual Disability. I don't know how her life experience as a very intelligent, adult diagnosed "autistic" gives her tremendous, or any,  insight into the challenges faced by low functioning, intellectually disabled autistic children.  Nor have I seen her, or the good Doctor, make any statements describing or addressing in any intelligent fashion the many serious behavior challenges faced by those severely affected by autism disorders.  What is clear though is that Michelle Dawson and Dr. Laurent Mottron both believe that autism is a good thing that should not be cured.  They have long held these anti cure, including anti ABA treatment,  autism beliefs. 

Dr. Mottron also appeared as an unidentified expert witness "the mysterious Dr. M" in Ms Dawson's case before a Canadian Human Rights Tribunal, Dawson v. Canada Post Corporation, 2008 CHRT 41 in which he described the idea of curing autism as nonsense:

[86] Ms. Dawson testified that autism is a neurological disability and that people generally do not have a good understanding of this reality. Ms. Dawson stated repeatedly that autism was not a mental illness. For her, a mental illness has an onset, various treatments, and there is a return to the previous state to a greater or lesser degree. Both Ms. Dawson and Dr. M., as will be seen, pointed out that the notion of curing autism was nonsensical. Still many people want to cure autism.


b) The testimony of Dr. M

[99] At the beginning of his testimony, Dr. M., who is a psychiatrist, was qualified by the Tribunal as an expert in autism. Dr. M. filed a report as well as three letters pertaining to Ms.Dawson’s condition.

[100] Dr. M. testified on the nature of autism, autistic individuals as well as on Ms. Dawson’scondition. The credibility of Dr. M. as well as the accuracy of his statements and opinions wasnot challenged by the Respondent. The Tribunal finds Dr. M.’s testimony highly credible even if the evidence shows that in recent years, Ms. Dawson has worked with him and has co-authored scientific articles with Dr. M.

And now, surprise, surprise, surprise,  Dr. Mottron has published a study which, according to the good Doctor, supports his long held belief that autism should not be cured.  I wonder how many low functioning, severely challenged, intellectually disabled autistic subjects were included in Dr. Mottron's study? I do not buy what the mysterious Dr. M is selling and I doubt that most parents with autistic children, and most professionals tasked with addressing some of the serious and dangerous challenges faced by autistic children and adults,  will buy it either.  

Dr. Mottron is not necessarily an objective, detached medical professional or scientific researcher.  He has long held a belief that autism should not be cured and his latest study conclusions are used to support  his own beliefs. Given his long held personal beliefs his study, and his public commentaries about what conclusions can be drawn from that study, should be given close, careful scrutiny.   In particular his conclusion that the study supports his belief that persons with autism should not be cured should be given very close examination.  As Dr. Mottron stated in the Vancouver Sun:

""While this study does not conclusively show a causal effect between brain activity and the enhanced abilities of those with autism, lead researcher Laurent Mottron of the University of Montreal said it is the most "robust" evidence yet suggesting a link. He said it adds another argument against attempts to "cure" autistics.

When we try to turn an autistic toddler into a non-autistic toddler, it's painful, it's expensive and it does not work," he said. "We should not try to assimilate or break the difference (between autistics and non-autistics), but just admit that it's a difference that has good and bad consequences."

High functioning autism researcher Dr. Laurent Mottron has been promoting his anti autism cure belief for many years.  Hopefully his latest efforts to thwart treatment and cure of autism disorders will enjoy no more success than his previous efforts.  The chance to improve the lives of autistic children and adults is too big a price to pay for the promotion of Dr. Mottron's personal belief system.

Thursday, April 07, 2011

Autism and Wandering: It's A Matter of Life and Death

The Vancouver Sun is one of the very few media outlets that has presented an honest, reality based picture of autism disorders  to the public.  The series Faces of Autism remains one of the most comprehensive, honest portrayals of autism ever presented by mainstream media.  It comes as no surprise then that the Vancouver Sun has highlighted the important autism issue of wandering autistic children for exactly what it is ... a life and death issue.

In Search for missing boy highlights autism issue Autistic children are prone to wandering, forcing parents to take drastic measures to protect them the Vancouver Sun presents a Mike Appleyard/Postmedia News report on Adam Benhamma, the young, mute, autistic boy from the Laval area near Montreal who has been missing for several days near icy waters. The article tells of the tendency of autistic children to wander, of the efforts parents must make to protect their autistic children from wandering and the impact it has on them, and reports on the IAN, Interactive Autism Network,  announcement of a national survey to study the prevalence of wandering among individuals with autism.

Veronica Fraser, mother of James DeLorey,  the young autistic boy from Nova Scotia who was lost in a snow storm and died in hospital shortly after being found provides insight from her son's tragedy. Wendy Fournier of the National Autism Association comments on the IAN study and on her own personal experience with her wandering autistic child:

"Fournier said she hopes this study will help parents understand why autistic children wander.

"We have parents who literally sleep outside their child's door because they're afraid their kids are going to get out of the house. It's a huge, terrifying problem," she said.

Fournier noted that her daughter Aly is autistic, and said she has experienced the fear of losing her child -something that is common among parents of autistic children.

"One day I was sitting on the couch, drinking coffee. All of our doors are completely locked -there's no way she can get out of the house. And my doorbell rings. It's my neighbour telling me that my daughter is next door trying to get into the swimming pool. And I have no idea that she was even out of the house.""

I have remarked on several occasions on this blog site about my personal experience with wandering, of the day when my son Conor slipped out of the house while I was on the phone discussing a business matter.  Thanks to good luck, a Good Samaritan who removed Conor from traffic on a busy street and him to a safe location, and our local 911 service Conor, and I, were very fortunate, we came out on the happy side of  the life and death reality of wandering autistic children.

Adam Benhamma and his family are living with that life and death reality right now.

I hope that Adam, despite the grim situation, is found safe and sound.

Wednesday, April 06, 2011

Autism, Epilepsy and Self-Injurious Behavior: A Reality Based Autism Blog You Should Read

I have recently added a new blog to the "Autism Reality Favorites" section of my sidebar. Autism, Epilepsy and Self-Injurious Behavior is authored by Kim Oakley whose videos about her autistic son also provide an honest portrayal of the very serious challenges autism disorders present to severely autistic children and adults.  This is not the feel good "autism is just  a different way of thinking" of Dr. Laurent Mottron,  Estée Klar or Ari Ne'eman. I strongly encourage anyone with a serious interest in autism disorders, especially parents of newly diagnosed autistic children and public policy makers whose decisions affect the availability of public services for autism to check out Autism, Epilepsy and Self-Injurious Behavior.  While you are there follow some of the links to the videos Kim Oakley has posted with their honest portrayal of serious autism self injury issues.

Monday, April 04, 2011

Timing: Joy of Autism Nonsense and Sad News of Missing Autistic Children


The news continues to look frightful and grim for the  3 year old autistic boy near Montreal who went missing while his father was in a friend's house for a few minutes and where authorities have now called off an intense ground search and hope is fading. A few days ago a six year old autistic boy in Melbourne Australia who went missing from his home was struck and killed by a train.  Meanwhile Canada's Joy of Autism movement is once again pushing its bizarre view that autism  disorder is not a disorder at all it is , as stated by  Estée Klar, a Joy.  The mother of an autistic child actually thinks that autism is a joy.  The parents and family members of the 3 year old boy near Montreal, the 6 year old boy near Melbourned, of young James Delorey who perished in winter weather last year in Halifax might disagree with her "logic" in describing autism as a joy.  

I most certainly disagree. I am the father of a severely autistic boy and  could have lost him several  years ago when he slipped out of the house and attempted to cross a very busy street stopping traffic until a good Samaritan stopped and took him to a nearby convenience store and 911 was called. I remain very grateful to that gentleman and to the police for bringing my son to safety. I would never, ever embrace the fuzzy logic that results in calling autism disorder a joy.

Estée Klar has published her support for a coalition of advocacy organizations that object to the attempt to codify wandering as a separate criteria for autism.  Research  they say, research is needed. Yeah right.  Let's take 10 to 20 years and conduct methodologically unsound statistical surveys and call them science while we ignore the current evidence of harsh realities that wandering behavior in autistic children results in. In the meantime Estée can lecture us on how autism is  joy not a disorder. 

Many autistic children and adults are prone to wandering from their homes and caregivers. That is an unpleasant reality that should be made known to the parents of newly diagnosed children and professional caregivers now, so they can take steps to protect the autistic children and adults in their care, now, not 20 years from now.We don't need more autistic children wandering away and coming to harm.

Saturday, April 02, 2011

Unfulfilled Promise: Intellectual Disability Ignored on World Autism Awareness Day

Today is World Autism Awareness Day (WAAD). The establishment of WAAD held out great promise of elevating the world's understanding of the realities of autism spectrum disorders and the challenges they present to those diagnosed with one of the Pervasive Development Disorders slotted for merger into the New Autism Spectrum Disorder in the DSM5.  The promise, however, remains largely unfulfilled.  The world has learned to associate autism with the color blue but beyond that the very serious realities of those with autism and intellectual disability, those who are very low functioning, those who are self injurious, those who wonder away, some never to return alive,  are rarely spoken of in the rah rah fund raising promotions which mark the onset of World Autism Awareness Day.  Intellectual Disability, in particular, remains the  elephant in the autism living room, a very large presence of which no one speaks.

Autism Speaks was one of the prime movers in establishing World Autism Awareness Day.  The official Autism Speaks WAAD site describes what autism is in very general terms but makes no mention of the very close association between Intellectual Disability and Autistic Disorder or classic autism with as many as 80 % of all persons with Autistic Disorder also having Intellectual Disability:

What is the intellectual disability component of autism that no one mentions this World Autism Awareness Day?

From 30% to 60% of children with an autism spectrum disorder (ASD) have an IQ measure that falls in the intellectual disability (ID) range.

(Catherine Rice et al., Risk for cognitive deficit in a population-based sample of U.S. children with autism spectrum disorders: Variation by perinatal health factors, Disability and Health Journal, Volume 3, Issue 3, Pages 202-212 (July 2010)

Autism and intellectual disability: a study of prevalence on a sample of the Italian population.
Psychiatry Unit, Department of Neurological and Psychiatric Sciences, University of Florence, Hospital of Careggi, Florence, Italy.


BACKGROUND: In 1994, the American Association on Mental Retardation with the DSM-IV has come to a final definition of pervasive developmental disorders (PDD), in agreement with the ICD-10. Prevalence of PDD in the general population is 0.1-0.15% according to the DSM-IV. PDD are more frequent in people with severe intellectual disability (ID). There is a strict relationship between ID and autism: 40% of people with ID also present a PDD, on the other hand, nearly 70% of people with PDD also have ID. We believe that in Italy PDD are underestimated because there is no agreement about the classification system and diagnostic instruments.
METHOD: Our aim is to assess the prevalence of PDD in the Italian population with ID. The Scale of Pervasive Developmental Disorder in Mentally Retarded Persons (PDD-MRS) seems to be a very good instrument for classifying and diagnosing PDD.

RESULTS: The application of the PDD-MRS and a clinical review of every individual case on a sample of 166 Italian people with ID raised the prevalence of PDD in this population from 7.8% to 39.2%.

CONCLUSIONS: The study confirms the relationship between ID and autism and suggests a new approach in the study of ID in order to elaborate a new integrated model for people with ID.

Definition: Autism is a pervasive developmental disorder, first identified by Kanner in 1943. Decades later, Autism came to be viewed as the more severe of the Autism Spectrum Disorders (ASD) which also include Asperger’s Disorder. ASD is a heterogeneous disorder that includes a range of developmental impairments in the areas of social skills, verbal and non-verbal communication as well as restricted or repetitive interests or behaviours.

Symptoms and Impairments:

• Cognitive impairment is present in about 80% of persons diagnosed with Autism and
general intellectual functioning is most often below average. Persons diagnosed with
Asperger’s Disorder have average to above average intellectual functioning.
CDC Medical Epidemiologist Dr. Marshalynn Yeargin-Allsopp - CMAJ Interview 

"But the autism umbrella has since widened to include milder forms, says Dr. Marshalyn Yeargin-Allsopp, a medical epidemiologist at the CDC. For example, it now includes Asperger syndrome, where the sufferer is socially impaired, but experiences typical language development.
Another difference between past and present autism diagnosis involves the presence of intellectual disabilities, adds Yeargin-Allsopp. During the 1960s and 1970s, the vast majority of those diagnosed with autism had an intellectual disability but today, only about 40% have one."

[Note: Dr. Yeargin-Allsopp's figure of "about 40% with an ID is for the entire Autism Spectrum and is lowered because of the inclusion of Aspergers which, as a diagnosis, excludes ID]

Department of Health & Human Services - Center for Disease Control Counting Autism 

CDC’s most recent data show that between one in 80 and one in 240 children with an average of one in 110 have an ASD. This is a prevalence of about one percent of children. These results reflect data collected by CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network in multiple communities throughout the U.S. in 2006. 

Estimates are based on health and education records from participating communities, which includes eight percent of the U.S. population of eight year olds. All children in the studies were eight years old because previous research has shown that most children with an ASD have been identified by this age for services.
Cognitive Functioning (from the pdf version)


From 37.9% (Arizona) to 63% (Alabama) (overall average: 43.8 %) of the children identified with an ASD also had an intellectual disability (an IQ ≤70, at the sites that had test results on intellectual ability for at least 75% of the children identified).


From 29.3% (Colorado) to 51.2% (South Carolina) (overall average: 41.0 %) of the children identified with an ASD also had an intellectual disability (an IQ ≤70, at the sites that had test reults on intellectual ability for at least 75% of the children identified)
A pervasive developmental disorder defined by the presence of abnormal and/or impaired development that is manifest before the age of 3 years, and by the characteristic type of abnormal functioning in all three areas of social interaction, communication, and restricted, repetitive behaviour. The disorder occurs in boys three to four times more often than in girls. 


All levels of IQ can occur in association with autism, but there is significant mental retardation in some three-quarters of cases. 

F84.1 Atypical Autism

A pervasive developmental disorder that differs from autism in terms either of age of onset or of failure to fulfil all three sets of diagnostic criteria. Thus, abnormal and/or impaired development becomes manifest for the first time only after age 3 years; and/or there are insufficient demonstrable abnormalities in one or two of the three areas of psychopathology required for the diagnosis of autism (namely, reciprocal social interactions, communication, and restrictive, stereotyped, repetitive behaviour) in spite of characteristic abnormalities in the other area(s). Atypical autism arises most often in profoundly retarded individuals whose very low level of functioning provides little scope for exhibition of the specific deviant behaviours required for the diagnosis of autism; it also occurs in individuals with a severe specific developmental disorder of receptive language. Atypical autism thus constitutes a meaningfully separate condition from autism.
* atypical childhood psychosis
* mental retardation with autistic features