Monday, August 29, 2011

Canadian Government Funded Study Advice for Parents of Children with Autism: ABA Doesn't Work, Set Your Children Free and They Will Prosper!

A study funded by the Canadian Institutes of Health Research (CIHR) has found, surprise, surprise, that ABA is of limited effectiveness in treating autism.  The Pathways in Autism Spectrum Disorders study led by Dr. Peter Szatmari, Dr. Dr. Susan Bryson and Dr. Eric Fombonne was established with the belief at the outset that ABA is of limited effectiveness in helping low and high functioning autistic children. It was also established, not surprisingly given its government financing, and the predispositions of the lead researchers, with a view to avoiding the expense associated with providing ABA intervention.

Reducing expense is an obvious concern of a federal government which has been under pressure to provide ABA coverage for autism under our national medicare scheme. Dr. Szatmari, Dr. Fombonne and Dr. Bryson signed on to the federal government initiative to discourage medical coverage of ABA many years ago as evidenced in their 2006 Brief to the Canadian Senate. Their opinions, as articulated in 2006, are also reflected in their recent 2011 video.  Plus ca change, plus ca rest la meme. 

In  the  2006 brief to the Canadian Senate the Pathways in ASD lead researchers declared unequivocally that autism is an entirely  genetic disorder with Dr. Szatmari dedicating his career to finding the genes in question:

"For example, we do know what causes autism. It is caused by genetic factors [20]. It is an inherited disorder. The answers to what is inherited and how it is inherited are not known. But, along with my colleague, Dr. Steve Scherer at the Hospital for Sick Children, we at the Offord Centre for Child Studies are leading an international team of scientists dedicated to finding the genes that cause this disorder." [emphasis added HLD]

What is interesting is that Dr. Szatmari professes great faith in an evidence based approach to autism interventions yet  when discussing autism causation is prepared to declare autism to be an inherited, genetic disorder without knowing what genes cause the disorder, what is inherited and how it is inherited.  Evidence based?  Of further interest when news broke of the California Autism Twins Study, (CATS), interpreted by most observers as debunking the myth that autism is entirely genetic, that autism probably results from gene environment interaction,  Dr. Szatmari took a much different view pointing to the study as being of significance  because it confirmed the importance of genetic factors in causing autism, a very strange view given the dominance of genetic based autism research,  over the previous two decades:

This is a very significant study because it confirms that genetic factors are involved in the cause of the disorder but it shifts the focus to the possibility that environmental factors could also be really important."[emphasis added HLD]

In its 2006 submission while professing support for evidence based autism interventions the Szatmari, Fombonne and Bryson trio acknowledged that early intervention was necessary but immeidately set to work discrediting both ABA effectiveness and the struggle by parents to require government funded medicare coverage for our autistic children:

"It is true that early intervention makes a difference but it is not true that all children need exactly the same type of treatment [2, 21]. Not all children need incredibly intensive intervention that takes between 20-40 hours a week. Some children do respond, but some children do not respond to even that level of intensity and need another form of treatment. Others do not require that level of intensity and can do just as well with less intensive forms of treatment that are carried out in more naturalistic settings [23]. We do not know the relative proportion of those types of children but there is now more and more scientific evidence showing us that different forms of intervention can be adapted to different types of Autism Spectrum Disorder. More work needs to be done but we are much farther ahead today than we were even five years ago."

The 3 doctors do not elaborate on what interventions, other than ABA, can be fairly described as evidence based.  Like all critics of ABA they provide no real alternative.  Nor did they acknowledge the research summarized by US agencies like the office of the US Surgeon General, the MADSEC Autism Task Force, state agencies in New York and California which have reviewed the research literature and found  ABA to be the only evidence based effective intervention for autism.

The Szatmari, Fombonne, Bryson support for the federal government autism agenda is considerable. They diminish ABA as ineffective, contrary to US authorities, and expensive.  At the same time they attack the parents who advocated for government funded ABA characterizing their litigation efforts as founded on "ill will":

"The problem is that so much animosity and ill will has built up over the last few years that it is extremely difficult to engage all the stakeholders in constructive conversations in this environment. Is there any other disorder of childhood that has gone to the Supreme Court of Canada? This ill will and this variation from province to province is essentially the direct result of a lack of information, a lack of knowing what the best treatment for each child with Autism Spectrum Disorder might be. This lack of knowledge leads to a dearth of well-qualified practitioners, long waiting lists, and non-evidence based treatments all across the country." [emphasis added HLD]

Of course the 3 doctors mention that parents are involved as part of their consultations on autism strategy. I have commented in the past on the CIHR national autism strategy consultations which included the Dr.'s Szatmari, Fombonne and Bryson.  When the national autism symposium was postponed without compelling reasons the Autism Society Canada twice expressed its concerns over the direction CIHR and the federal government were taking autism consultations. My name as a delegate was rejected by CIHR despite being put forward by the Autism Society New Brunswick as a representative and was approved by two further references, one a registered nurse and mother of an autistic child and the other a clinical psychologist with an active autism practice in New Brunswick.  When I contacted CIHR for an explanation I was told that the names of delegates were those put forward by the Autism Society Canada (Even though the federal government position was that autism was a provincial, health care, issue). (a)(b)(c) (d) (e)

The truth was that the federal government and CIHR did not want parents at the consultations who were advocating for government coverage of ABA treatment for autistic children.   Doctors Bryson, Fombonne and Szatmari all participated at the autism "consultations" when they were finally held in November 2007.  While parental ABA advocates were excluded opponents of curing autism  like Michelle Dawson and Dr. Laurent Mottron were included. In the 2011 video Dr. Szatmari tells us that the study originated with parents and with the community. In truth they excluded discussions with parents seeking ABA for their children.

Now the federal agenda friendly team of Bryson, Fombonne and Szatmari,  has put a video online in 2011 which, as they did in 2006, the 3 doctors diminish ABA as an intervention.   Meanwhile the American Academy of Pediatrics published a directive in 2007 which described the gains made by autistic children who received early ABA intervention.  That policy directive was confirmed by the AAP in December 2010.  The Szatmari/CIHR video confirms the 2006 opinions of the 3 doctors presented to the Canadian Senate but ignores the AAP conclusions and research subsequent to 2006.

In the CIHR video Dr. Szatmari paints the study as parent and community driven.  In fact it is only those parents and community members who were not ABA advocates that were involved in this government financed, tightly controlled, manipulated and driven symposium/ consultation process.

In Canada parents looking for help for their autistic children have Bryson, Fombonne, Szatmari and their colleagues in arms in the battle against ABA, Mottron and Dawson, to provide guidance.  Fortunately though, hysterical and ill willed parents seeking real help for our autistic children are able to use the (gasp) internet and  we are able to access American authorities, like the office of the US Surgeon General, the MADSEC Autism Task Force, the Association for Science in Autism Treatment and the American Academy of Pediatrics,  who are not tied to our Canadian federal government anti-ABA agenda.

God Bless America!

Medicare's Orphans: Autism and the Marinoiu Family

This third trailer for Medicare's Orphans, scheduled for release this fall, features the Marinoui family.  While on a previous Toronto visit I had the pleasure of meeting Stefan Marinoiu and his lovely family: wife Bernadette, daughter Lia and son Simon who is severely affected by autism.  Stefan has twice risked his life, walking in mid winter from Toronto to Ottawa, and engaging in a hunger strike,  to bring attention to the autism crisis in Canada and the need for a real National Autism Strategy, one  which treats autism like a health disorder and provides treatment to all autistic Canadians. The trailer shows some of the anguish of this caring and courageous family that has struggled to give Simon the best life possible and to bring attention to his challenges.  They are challenges shared by many Canadian families with a member severely affected by an autism disorder.   

The Medicare for Autism Now! information release accompanying the trailer is a call for your support to end health care discrimination in Canada:

Meet Stefan, Bernadette, Lia and Simon Marinoiu. They live in suburban Toronto, Canada. Simon has autism and no longer lives with his family. His devastating situation represents the fate of many autistic children in Canada who are being denied effective treatment. Simon and his family are featured in the just released third trailer advertising Medicare for Autism Now's upcoming documentary, Medicare's Orphans, scheduled for release in October.

The film chronicles the stories of a number of families with autistic children from across Canada, each share the same problem - lack of access to effective autism treatment (ABA/IBI) via our "universal" health care system.

The film exposes some painful truths about who gets access to health care in Canada, the refusal to act by Canadian governments, both federal and provincial, and the Supreme Court of Canada's failure to protect our childrens' Charter rights, all of which rightfully brings Canada's reputation for fairness and human rights into serious question.

This film will be significant to both Canadian parents of children with autism as well as those living in other countries who live under the false assumption that Canada is a kinder and gentler place for people with disabilites. The film will also provide examples of what effective advocacy really is, what it has already achieved and what parents/supporters need to do in order to protect the gains others have made on behalf of their children, to move the cause forward, and to end health care discrimination in Canada in this generation.

To learn the history, the gains, the goals, and how to get involved in the autism treatment movement in Canada, go to:

Please forward this link, post it to your Facebook walls, and ask others to do the same. Also - very important - send it to your MLA and MP.

Thank you for your support.

Thursday, August 25, 2011

Canada Versus Autistic Children: Chilliwack Man's Daughter Denied Entry Because of Autism

Canada is at it again keeping immigrant families separated because one of the family's children has an autism disorder.  A few months ago many residents of New Brunswick were shocked to learn that a hard working,  respected South Korean family, the Maeng family,  that had been living in  Moncton, New Brunswick for several years would either all be deported or would be separated because one of their children had an autism disorder and epilepsy. That case ended well for the Maeng family when local residents and elected representatives in New Brunswick stepped up to the plate and intervened with the federal government. Now another family has actually been kept apart for two years even though the father is a productive manager of a helicopter transport operation in Chilliwack because a daughter is autistic.  

As reported by the Chilliwack Times, after a two year investigation Krishnan Balakrishnan, Transwest Helicopter's general manager, was  informed in June 2010 that his daughter would not be allowed to come to Canada because she had an autism diagnosis. The Chilliwack Times details Krishnan Balakrishnan business skills and history and the decision he will have to make about whether to stay in Canada or go home soon to reunite with his family.  The owner of Transwest Helicopter is not happy with the prospect of losing a valued senior manager and calls Citizen and Immigration Canada's decision cruel, bureaucratic and idiotic. 

60 Essential Twitter Feeds for Following Autism Education

Jasmine Hall of Online Colleges informed me that they had composed a list of 60 essential twitter feeds for following autism education and that Facing Autism in New Brunswick is on it (No. 11).  For anyone tweeting or following tweets of autism education take a look.  It seems to be a pretty good sampling of perspectives on autism education issues, including some with whom I disagree on important autism issues.  Of course TannersDad, who is probably autism's biggest tweeter, was listed (No. 19). (I don't think the number a tweeter is listed at signifies status of any kind or TannersDad would have been listed much higher than mine).

Wednesday, August 24, 2011

Parents and Teachers Should Not Be Misled: Autism, For Now, Includes Those With Intellectual Disability

The author of Autism and Oughtisms has posted a guest comment on the site Teaching the Teachers, Educating an Autistic Child is an Opportunity,  in which, like many other parents and professionals, she includes a commentary which distances autism disorders from intellectual disability:

"There is nothing inherent in autism as a condition, that limits a child’s intelligence or makes them impossible to teach. My own son for example (who has a diagnosis of classic autism) is clearly intelligent and incredibly eager to learn. There are however aspects of autism that will get in the way of learning; it is after all a developmental delay and learning disability."

The author's comment covers a lot of ground.  In the paragraph above I agree with most of what she says. What I disagree with though is the statement that "There is nothing inherent in autism as a condition, that limits a child’s intelligence".  That statement is correct in so far as the definition of autism in the DSM-IV does not require a finding of intellectual disability in order to determine that a child has an autism disorder.  It is true also in the sense that 100% of children with autism do not have an intellectual disability.  But it is misleading in  so far as there is a very clear association between classic autism, or DSM-IV Autistic Disorder and Intellectual Disability.  Parents and teachers should know at the outset that as many as 80%, or the vast majority,  of those with an Autistic Disorder diagnosis will also have an Intellectual Disability.  My sources for that assertion are set out in italics following this comment.   

While it is no longer acceptable to use the term "mentally retarded' to refer to those with intellectual disabilities or to openly mock them, it is still politically correct to exclude the intellectually disabled from consideration for inclusion in many discussions and contexts.  It has happened with the DSM-5 and the New Autism Spectrum Disorder, which will exclude from an autism diagnosis those with an Intellectual Disability, and should more accurately be called Asperger's Spectrum Disorder. It is also true with parents who want the world to know that although their child has an autism spectrum disorder they are not one of those with ... an intellectual disability. 

For the record my son has a diagnosis of Autistic Disorder and he is assessed as having "profound developmental delay".  He has an intellectual disability.   He too, like many autistic children, with or without intellectual disability, is also incredibly eager to learn notwithstanding his autistic disorder and his .... intellectual disability.   

Autism and Intellectual Disability Sources:

1) Canadian Psychological Association Autism Brief to the Standing Senate Committee on Social Affairs, Science and Technology November 9, 2006:

""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.""

2)Department of Health & Human Services - Center for Disease Control Counting Autism NOTE: The CDC surveys indicate the percentages of persons with Intellectual Disability and any Autism Spectrum Disorder including Aspergers.

""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)""

3) CDC Autism Expert Dr. Yeargin-Allsop noted that in the 60's and 70's ... before the DSM changes that added Aspergers (which excludes persons with Intellectual Disabilities) the "vast majority of persons with autism had intellectual disabilities. Not a simple majority ... the vast majority:

CDC Medical Epidemiologist Dr. Marshalynn Yeargin-Allsopp - CMAJ (Canadian Medical Association Journal)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."

4) The ICD-10 Classification of Mental and Behavioural DisordersWorld Health Organization, Geneva, 1992

F84.0 Childhood Autism

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

5) Autism and intellectual disability: a study of prevalence on a sample of the Italian population.

La Malfa G, Lassi S, Bertelli M, Salvini R, Placidi GF.
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.""

Monday, August 22, 2011

Jack Layton: Canada, and Canadian Families with Autistic Children, Have Lost A Strong, Compassionate Voice

Photograph by Fred Greenslade, Reuters

There will be many words spoken to express the great loss that Canadians feel on hearing of the passing of Jack Layton.  His positive, feisty, spirit won the hearts of many Canadians in the last election but he has long been a champion of great causes from the homeless to the environment.

Jack Layton was also aware of the challenges facing Canadians with autism and the need for the federal government to address those challenges. The Medicare for Autism Now! organization had obtained the following statement from Jack Layton as leader of the NDP which I had posted on September 17, 2008:

"Jack's Response on Autism

First, both NDP MP Peter Stoffer and myself have challenged the federal government for not providing funding in its last budget to help families with autistic children. I fully recognize that families with autistic children are in crying need of support and they are very disappointed that the Conservative government has ignored their needs in their budget spending.
On the matter of voting, in the April 3, 2006 to September 14 ,2007 session of parliament MP Shawn Murphy introduced his private members legislation 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. C-304 received first reading on May 17, 2006 but unfortunately it did not make it to third reading or a final vote because it died when the Harper government chose to prorogue that Parliament. I am also aware that on March 29, 2007, the Standing Senate Committee on Social Affairs issued a report on the Funding of Treatment for Autism titled:" Pay Now or Pay Later: Autism Families in Crisis" in which they recommended that the federal government demonstrate some leadership in the autism file by collaborating with the provinces to create a National Autism Strategy and address the funding of treatment. However, this report was not put before parliament for a vote.

New Democrats recognize that providing support for families with Autistic children has to be a bigger priority for the federal government than another corporate tax cut. That is why Peter Stoffer has introduced Private Members' Bills, C-211, An Act to amend the Canada Health Act (Autism Spectrum Disorder) to "ensure that the cost of Applied Behavioural Analysis ( ABA) and Intensive Behavioural Intervention (IBI) for autistic persons is covered by the health care Insurance plan of every province" and C -212, An Act respecting a Canadian Autism Day. ' The federal NDP is proud of Mr Stoffer's efforts to help put the needs of Autistic children on the political map."
Goodbye Jack.

Thursday, August 18, 2011

Top 3 Unknown Persons with Severe Autism List

It is routine to see references to very high functioning persons in the mainstream media.  On a web site called TopTenz the site owners have compiled a list called Top 10 People with Autism Known Today. Not suprisingly the list comprises those with very high functioning autism. It is difficult to understand why some of these people have mental health disorder diagnoses but they do.  What is unfortunate about these portrayals is that they do not represent those who are more harshly,  particularly those who are most harshly, affected by autism disorders.  The list includes, among others,  Daniel Tammet, Temple Grandin and  John Elder Robison.  All the names on the list  are successful, creative people who have functioned very well in society, business and the arts. One possible exception is Thomas McKean who was institutionalized for a period but emerged from that institutionalization and is an autism advocate.  Even his story though is not reflective of those who in fact remain institutionalized and cannot advocate or, in many cases, communicate with the world.

Why some on this list of distinguished, accomplished individuals even have an autism disorder diagnosis when they are so successful in life is beyond the understanding of this humble father of a severely autistic 15 year old boy.  Unlike some on the list my severely autistic son was not diagnosed at age 40.  He was diagnosed at age 2 because his challenges were obvious and severe at a very young age.  My son has nothing in common with the geniuses and talents on the Top 10 People with Autism Known Today list.   My son`s challenges are not known though to the general public which is very familiar, as this list demonstrates, with the Tammets, Grandins, Robisons and others of great ability.

My son has much more in common with those persons with severe autistic disorder who live out their lives  in psychiatric hospitals and general hospital wards.  My son has limited communication skills and limited understanding of the world.  He engages in self aggression and can not tell us if he is sick or hurting other than  through his frustrations.   He occasionally engages in public meltdowns and sometimes meets the stares of those who do not understand.  The public that sees a child or youth engaged in a public meltdown does not see autism, the public sees autism in the faces of gifted individuals splashed relentlessly on the media`s pages and sites.  The public will see instead a spoiled child, incompetent parents but they will not see a child with autism because, after all, persons with autism are very smart people accomplished in business, science, literature, rock music organizations and the arts.

There is a top ten list of known autistic persons. There is no list representing those who are uknown, those persons with autism who disappear in a Nova Scotia blizzard or wonder into automobile traffic or drown in a neighborhood pool.  There is no list of autistic persons who can not tell their parents why they don`t feel well.  

The unknown autistic persons  are those with the most severe challenges but the general public doesn`t see those challenges in web site  lists or in the mainstream media.  The media does not inform the general public about the realities of severe autism.  There is no list for the invisible autistic persons who have no flashy skills to show the world.  And the public remains fundamentally ill informed about autism disorders. 

Monday, August 15, 2011

Wesley Romey's Story: Why Canada Needs Medicare for Autism Now!

Medicare for Autism Now! has released the film Medicare's Orphans second trailer.  In this trailer Wesley Romey and his mother Laurie Guerra tell Wesley's story.  It is the story of a boy with serious autism challenges including lack of speech and extended meltdowns who has benefited from receiving ABA therapy.   Ms Guerra candidly points out that she had the resources to be able to afford ABA treatment for Wesley where many parents can not.  Wesley's life has changed for the better because of ABA.  Canada, which likes to talk about universal medicare, does not in fact have universal medicare when an effective  treatment for autism is denied to an entire class of people with autism disorders.  With  Medicare coverage of ABA for autism treatment many other young autistic Canadians could be receiving the life enhancing treatment. The film Medicare's Orphans is scheduled for release in September.

Friday, August 12, 2011

Autism and Cancer Research and Understanding Undergo Similar Paradigm Shifts

Autism research has been marked by an obsession with genetic focused research at the expense of research examining potential environmental causes or triggers of autism.  The frozen "it's gotta be genetic" mindset  of the autism research establishment identified years ago by Teresa Binstock might finally be shattered by recent efforts including the California Autism Twins Study (CATS). It is interesting too to learn that cancer research has also been slowed by a similar obsession with genetic research and ignoring of possible environmental factors.

In Cancer: Belatedly, Environmental Causes Get their Due  Justine Chow and Feifei Li, Research Assistants with the Environmental Working Group, comment on a  recent Duke University study which highlights a dramatic change in thinking among cancer specialists and practicing oncologists who now increasingly see pollution and other environmental factors as causes of cancer:

"For decades, most cancer researchers focused on genetics, diet, smoking and aging populations as the chief culprits, all but dismissing other environmental factors. As recently as 2003, a World Health Organization report featured the conventional wisdom that only 1-to-4 percent of all cancers were due to pollution.

More cancer specialists and oncologists see environmental link

A new report by Duke University researchers highlights the dramatic shift since then among cancer specialists and practicing oncologists. In a paper being published in the September issue of the Journal of Oncology Practice, the Duke team reports on a survey of young oncologists it conducted at the 2010 Australia and Asia Pacific Clinical Oncology Research and Development Workshop.

The Duke researchers found that these specialists from low- to middle-income countries consider pollution and other environmental factors one of the three top reasons for the growing burden of cancer in their countries. Close to a third (32 percent) called environmental factors important contributors, contradicting the traditional reserve that cancer researchers and physicians felt about attributing cancer to environmental causes.

Even though air, water and soil pollution became a major concern during the 20th century, only recently has compelling evidence mounted that carcinogenic chemicals are taking a significant toll on human health. Case studies of water and soil contamination are finding cancer clusters and population-wide epidemiological trends that link pollution to increases in the overall cancer burden, especially in impoverished regions where exposures are often higher than in wealthier nations."

It is likely that the cancer and practicing oncologist world, like the autism world,  will have their own Oracles who will be unable to thaw out their rigid mind sets and consider the interaction of genetics and environment as a more informed model for conducting research and understanding human health issues.  Still it is encouraging to see that the paradigm shift taking place in the world of autism research,  a shift which replaces the purely genetic model with the gene environment model may be reinforced by a similar shift taking place in other areas of human health.

With a Perfect Storm Approaching for NB Autistic Students Some Tips for Obtaining an Autism Trained Education Assistant

If your child with autism is moving into the school system you may want a trained TA to continue the progress achieved in the pre-school years. If your autistic child is already in the school system and you believe he/she would benefit from the help of an autism trained TA these tips might also help. No matter where you are in New Brunswick whether in Saint John, Moncton, Fredericton, Bathurst Miramichi or Edmundston do not hestitate to email me at if you have a question.

I  have been an active member of autism advocacy  organizations in New Brunswick for over a dozen years. I say advocacy because the focus of   efforts I have been involved with have been to obtain effective, evidence based help for children and adults with autism.  I have received no salary or income of any kind for my autism advocacy and I have never sought a pat on the head from government officials (not that they would have wanted to anyway) Mostly I am the father of two boys one of whom is severely  autistic. Like everyone else, I am continually advocating  for a trained Education Assistant to work with my autistic son.  

I once again offer an article I first published in 2006 in the Autism Society New Brunswick newsletter to give parents some ideas to consider in advocating for an Education Assistant for their child. It is offered at a time when I believe it will be increasingly difficult to obtain a quality autism trained Education Assistant to work with a New Brunswick autistic student.

In Conor's case his mother and I have sought Education Assistants with the UNB-CEL Autism Intervention Training program.  This New Brunswick developed program has received recognition from international autism experts like Dr. David Celiberti and Dr. Eric Larsson. Between 500 and 600 TA's as they were then called, were trained at UNB-CEL before the Department of Education in order to reduce costs and increase department control over training of assistants, abandoned the program in favor of a watered down version taught in house without the quality and integrity assurances provided by the UNB-CEL training.  

Whatever you hope for in the Education Assistant working with your child it will be more difficult now with cuts being made this year in the numbers of Education Assistants.  Unfortunately the  new collective agreement entered into between CUPE Local 2745 and the Province of New Brunswick continues the promotion of adult interests, over the interests of children with autism and other disabilities requiring accommodation.  The situation is worse now with the Alward government and its unofficial Education Minister Gordon Porter and his unofficial branch of the Education Department ... the New Brunswick Association for Community Living. 

Despite doing good work in many areas, and making many  positive contributions, Mr. Porter and NBACL have for decades  promoted a mainstream classroom inclusion for all model of inclusive education and have resisted accommodations sought by NB autism advocates.  They have at times resisted with open hostility efforts by autism advocates seeking learning accommodation in separate quieter areas of local schools from autism trained TA's.  Their ideas have changed or modernized very little during the past decades.   

There is currently a review of New Brunswick's inclusive education system being conducted by Mr. Porter and those who have participated in NBACL.  The review will undoubtedly result in a report which confirms their decades old ideology, cuts costs to the Department of Education, and protects the interests of untrained  Education Assistants over the interests of children with autism.  There will probably be fewer and fewer Education Assistants with quality autism training. They will increasingly be pressured to work in mainstream classrooms which will not necessarily be appropriate for some students with autism disorders. Mainstream classroom inclusion will make it less likely a student with autism will receive an EA  with proper autism training and the individual instruction required in some instances. 

These factors will make it very easy for local education authorities to justify, even glorify, cutting proper training and retention of autism trained Education Assistants. There is a perfect storm brewing and parents will have to fight even  harder to ensure their autistic children receive the education services they require. 

Following are some tips I originally posted in an Autism Society New Brunswick newsletter in 2006. They are my advice as a parent (not as legal advice), and as general information.  For those seeking help in obtaining an Education Assistant you may want to give them some consideration. You may also want to seek     assistance from other parents with an autism advocacy background. I did. They were a big help in getting an   Education Assistant  for our  son.

1. Document your child’s condition and school requirements. If your child is diagnosed with an autism spectrum disorder make sure that the school has a copy of the diagnosis. This may seem obvious but in some cases the school and district have been able to point out that they were unaware of any actual diagnosis of autism disorder.

2. Medical, Psychological or Therapeutic Assessments – If you think your child needs a Teacher's Assistant to learn in the school environment you should ask any pediatrician, psychologist, occupational therapist, speech language therapist or behavioural interventionist who is working with your child if they agree and would provide a written recommendation for a TA and present their recommendations to the school.

3. Be a Parent Advocate – Most parents know their autistic child better than most professionals. Do not be afraid to speak up – politely – but without fear - to express your view of what your child requires.

4. Autism Advocates – If you know an autism advocate or fellow parent of an autistic child who would be willing to attend a meeting with the school you should bring them along. They can provide you with moral support and confirmation of your experiences as a parent in describing what your child requires.

5. Safety – For many autistic children a TA is a must for safety reasons alone and this must be stressed if it is true for your child. An autistic child may not appreciate the many dangers posed by school, playground and nearby streets.

6. Individual Learning Method – If your child requires an individual based learning method using Applied Behavioural Analysis (ABA) techniques, or other individual based instructions, emphasize this with the school. For ABA in particular there is a great deal of professional literature about the need for one to one instruction for autistic children.

7. IEP or SEP – If the school or district refuse a TA for your child do not sign off on the IEP/SEP for your child unless you agree with that decision. Or if you do sign put a note beside your signature stating that you still require a TA for your child. Otherwise the school and district will argue that you agreed that a TA was not necessary.

8. Appeal – If a TA is denied for your child be ready to appeal right away under the Education Act. The School should have informational pamphlets available and forms explaining the appeal process to you. You might also want to consider hiring a lawyer to work with you on the appeal process.

Conclusion – Preparation, pressure and persistence are all required to obtain and keep a TA for your autistic child. It is a long tough fight and it is one that almost all of us have to go through to one extent or another. Do not overreact emotionally or unduly antagonize school officials. You need their help and most want to help. Getting overheated gives an excuse to the few who do not want to help to refuse what you are looking for. Stay calm and persist.

Harold L Doherty

Monday, August 08, 2011

Terrific Autism News: Missing Severely Autistic Man Found Safe in Toronto

A  29 year old Toronto man with Autism has been found safe and sound. 680 Toronto News All News Radio reports that Gyafi Payne is described as having the "mental capacity of a five year old". He had gone missing around 7:30 pm Saturday.  Apparently he followed a local river to a golf course where he spent the night and was found the next day after a citizen at the golf course spotted him and called police. He was taken to hospital to be checked out and is reported to be in good shape.

Autism reality for the approximately 80% of persons with DSM-IV Autistic Disorder and intellectual disability is not necessarily a  joy for those persons and their families.  Stories of missing autistic persons do not always have a happy ending. As the father of a 15 year old severely autistic boy who went missing several years ago  (and was found safe and sound thanks to a helpful citizen and local police)  I am always happy, very happy, to read stories that end with a missing autistic person being found safe and sound. 

Saturday, August 06, 2011

Medicare's Orphans Trailer 1: The Hudson Family Sacrifice for their Child with Autism

This video is the first trailer for Medicare's Orphans by Medicare for Autism Now! which will examine Canada's shameful exclusion of autism treatment from Medicare coverage and the consequences for autistic children and their families. It provides a brief overview of the sacrifices made by the Hudson family, of the greater Toronto area,  to help their autistic child live the fullest, most independent life possible, sacrifices made all the larger by Canada's large scale neglect of autistic children and their need for effective, evidence based treatment.

Wednesday, August 03, 2011

DSM-5 Autism Spectrum Disorder: 3 Domains Become 2 and Exclude Intellectually Disabled

In the DSM-5 the new Autism Spectrum Disorder will, for the most part focus on those with Aspergers' and high functioing autism. The vast majority of those with Autistic Disorder who are also intellectually disabled will be excluded. This is clear from the wording used in the proposed new Autism Spectrum Disorder and in the wording of the new Intellectual Developmental Disorder.  That interpretation is also confirmed by the official rationale for the new ASD.

The new Autism Spectrum Disorder, as I have previously written, is misnamed. It would be much more accurately described as New Asperger's Spectrum Disorder.  The new version, which will be rubber stamped, on final review by the APA DSM-5 work groups, will exclude persons with intellectual disability as the current DSM-IV Asperger's criteria does and will remove language delay and general communication impairment also making the ASD consistent with DSM-IV Asperger's criteria.  In addition the DSM-5 ASD criteria make it clear that although the New ASD must be  present from infancy or early childhood it may not be detected until later because of minimal social demands and support from parents or caregivers in early years. This consideration helps those on the milder end of the current autism spectrum.  

As an example my son who is severely affected by his Autistic Disorder and profound developmental delays was diagnosed at age 2 several months after we had begun to seek medical attention for his lack of development.  We knew nothing about autism but his lack of development was apparent and disconcerting. By contrast the media is full of stories of very high functioning persons, some of whom are now quite famous self appointed spokespersons on behalf of all persons with autism who were diagnosed as teens or adults. The  "may not be detected until later" qualifier helps ensure that the New ASD captures those with Asperger's and High Functioning Autism.

I have previously noted that the criteria for the New ASD also excludes those with intellectual disabilities. It does so  by:

1. Establishing 4 mandatory criteria each of which MUST be met before ASD will be diagnosed:

2. Excluding fulfillment of mandatory criterion A where that criterion can be accounted for by general developmental delay:

If a child has general deficits in communication it seems obvious that the general communication deficit will include social communication deficit.  The DSM-5's new Intellectual Developmental Disorder confirms this assertion in mandatory Criterion B which specifically states that deficits in general mental ability impair functioning in various areas including communication and social participation:

The  DSM-5's New Autism Spectrum Disorder rationale also confirms the exclusionary effect of the new Autism Spectrum Disorded Mandatory Criterion A by explaining why 3 domains will be collapsed into 2:

The explanation does continue on but the first example highlights why the reduction from 3 domains to 2 confirms that DSM-5 ASD mandatory Criterion A will exclude the intellectually disabled. As the DSM-5 description of Intellectual Developmental Disorder states the deficits in general mental abilities will impair functioning by limiting and restricting participation and performance in daily life activities such as communication and social participation.  The rationale offered for the new ASD meanwhile states the obvious:  deficits in communication and social behaviors are inseparable

When a person suffers from general mental deficits sufficient to meet an Intellectual Developmental Disorder diagnosis he/she will suffer impairment in communication and social interaction.  They are inseparable.  In any instance where a persons meets the IDD criteria they will not meet criterion A of the New ASD because their  persistent deficits in social communication and social interaction will be accounted for by general developmental delay.  

The description  of the DSM-5's new Autism Spectrum Disorder's mandatory Criterion A and the description of the new Intellectual Developmental Disorder combine to exclude from an Autism Spectrum Disorder diagnosis those who are intellectually disabled.  That interpretation is confirmed both by common sense and by the DSM-5 rationale for the new ASD.  3 domains become 2.  Deficits in communication and social behaviors are inseparable.  Those with IDD will suffer deficits in communication and social behavior and will be accounted for by their IDD diagnosis thus excluding them from an ASD diagnosis. 

In the brave new world of the DSM-5, as in the mainstream media, as in Hollywood, as in autism research generally, the Intellectually Disabled will be excluded from the autism spectrum. 

Tuesday, August 02, 2011

High Functioning Autism fMRI Brain Scan Study Misrepresented to the Public

"research in ASD has tended to use overwhelmingly White, middle to upper middle class samples, and has often excluded children with multiple disabilities and/or severe to profound intellectual disabilities". [underlining added - HLD]

Yet another fMRI brain scan study, The neural basis of deictic shifting in linguistic perspective-taking in high-functioning autism,  has been published in which Low Functioning, Intellectually Disabled autistic subjects are, by design, excluded  in favor of subjects with High Functioning Autism. This study published in the journal "Brain" by researchers Marcel Just, Akiki Mizuno and their collaborators at CMU's Center for Cognitive Brain Imaging (CCBI) and described in a PR Newswire Release found that errors in choosing a self-referring pronoun (eg. "you" instead of "I") "reflect a disordered neural representation of the self, a function processed by at least two brain areas — one frontal and one posterior". 

As evidenced by the above quote from autism expert Catherine Lord low subjects with low functioning autism, which would include the 80% or persons with Autistic Disorder (DSM-IV) and intellectual disability, are often excluded from autism research.  That exclusion of low functioning, intellectually disabled subjects from  recent  fMRI "autism" brain scan  studies has been even more obvious.  

The Carnegie Mellon researchers should be commended for describing their conclusions, as their study title expressly states,  in terms of High Functioning Autism given that their study subjects were all high functioning autistic persons.   Unfortunately the press release, which identifies Carnegie Mellon as the source of its information,  is not as meticulous and generalizes the study to the entire autism spectrum  in its title and content, including quote from lead research Marcel Joust:

New CMU Brain Imaging Research Reveals Why Autistic Individuals Confuse Pronouns


The results revealed a significantly diminished synchronization in autism between a frontal area (the right anterior insula) and a posterior area (precuneus) during pronoun use in the autism group. The participants with autism also were slower and less accurate in their behavioral processing of the pronouns. In particular, the synchronization was lower in autistic participants' brains between the right anterior insula and precuneus when answering a question that contained the pronoun "you," querying something about the participant's view.

"Shifting from one pronoun to another, depending on who the speaker is, constitutes a challenge not just for children with autism but also for adults with high-functioning autism, particularly when referring to one's self," Just said. "The functional collaboration of two brain areas may play a critical role for perspective shifting by supporting an attention shift between oneself and others.

"Pronoun reversals also characterize an atypical understanding of the social world in autism. The ability to flexibly shift viewpoints is vital to social communication, so the autistic impairment affects not just language but social communication," Just added.


Ongoing research at the CCBI is assessing the white matter in detail, measuring its integrity and topology, trying to pinpoint the difference in the autistic brain's networks.

"This new understanding of what causes pronoun confusion in autism helps make sense of the larger problems of autism as well as the idiosyncrasies," Just said. "Moreover, it points to new types of therapies that may help rehab the white matter in autism."

Presenting the results of a study of High Functioning Autism subjects as representing all persons with autism, including the low functioning, intellectually disabled excluded from the study is  misrepresentation. It helps promote ignorance, both in the general public about the many intellectually disabled persons with low functioning autistic disorder identified by CDC autism expert Dr. Marshalynn Yeargin-Allsopp as autistic disorder's "vast majority".