Sunday, July 29, 2012

Conor and Mom Ignore Autism and the Heat and Have Lots of Killarney Lake Fun

Conor and Mom beat the heat, leave autism behind and enjoy some Killarney Lake fun this morning. In the pictures with his Mom Conor demonstrates once again that autistic kids can be very affectionate and caring. Dad was having fun too taking pics and once in a while (when Conor stopped and waited) catching up.

Saturday, July 28, 2012

The Aurora Horror and Michelle Dawson's Bizarre Anti Autism Advocacy Rhetoric

As an autism advocate in Canada I am very familiar with Michelle Dawson's angry rhetoric in which she attacks autism organizations advocating for autism treatment for autistic children. She has campaigned vigorously and persistently against provision in Canada of ABA services for autism disorders. With the recent horror in Colorado many people have, rightly in my opinion, criticized Joe Scarborough for his irresponsible linking, even if unintended, of autism disorders to the alleged perpetrator of the massacre. I was curious to see what different high profile autism commentators were saying on the issue and was startled, even given Ms Dawson's history of negative criticism of, largely parent driven, organizations seeking ABA treatment for their children, to read her comments at her QuickTopic discussion forum "The Misbehaviour of Behaviourists": 

I have never seen an autism organization, let alone "the most important" autism organizations, describe persons with autism as "natural born criminals". I have to assume that Ms Dawson has read a critique from somebody representing an autism advocacy group who has made such a statement but I never have. 

To many in the US and around the world it may seem of no importance that Michelle Dawson would make such a bizarre statement accusing the most important autism organizations of "promoting" autistics as just naturally violent, natural born criminals.  In Canada though some of our major institutions, including the CBC, the federal government of Stephen Harper and even the Supreme Court of Canada have given her a platform to speak on the premise that she is an "autistic" and that her views are relevant to important policy and legal decision making processes.  As Jonathan Mitchell, the Autism Gadfly, has pointed out in the past the views of Ms Dawson do not prevent her and her colleague Dr. Laurent Mottron from seeking, and receiving research funding from, one of "the most important autism organizations" ... Autism Speaks.  

I assume that Autism Speaks is not one of the organizations which Ms Dawson alleges to have promoted autistic persons as naturally born criminals or, with her lofty principles, she would presumably have refused to participate in Autism Speaks funded research.  Her bizarre angry rhetoric though calls into question her ability to conduct objective autism research and should disqualify her from providing counsel to future media, government and legal decision makers.

Friday, July 27, 2012

Invisible Real Autistics Suffer While Self Promoters Peddle False View of Autism Disorder As An Alternative, Superior Way of Thinking

Some self promoting, self proclaimed "geeks" are pushing a distorted view of autism disorders as being  the domain of different, even superior, thinkers.  Historical geniuses long dead are often cited as examples of "suspected" autistic thinkers. Of course, the self promoting ideologues do not go so far as to embrace possible evil "autistic thinkers".  Joe Scarborough was rightly criticized very recently for suggesting that an alleged mass murderer, whose name will not appear on this site, might be a person "on the autism scale".  Neurodiverisity autism "self advocates" were vehement in their criticism. Yet the same self promoting "autistics" will diagnose virtually every scientific, musical or artistic genius today, or long dead relics of history, as being or having been autistic.  Meanwhile those for whom autism is in fact a disorder, a disorder which limits their lives to institutional care in various forms, that inflicts bouts of serious, sometimes brutally serious self injury, those who wander to their demise, the many with autistic disorder who are intellectually disabled or generally lacking in cognitive development and understanding of the world are never mentioned by the self promoters of "aren't we smart" autism.

Yet another example of the misrepresentation of autism disorders as an alternative, superior way of thinking has been posted at the io9 web site under the title  How Autism is Changing the World for Everybody.  Admittedly io9 is not an online peer reviewed science journal.  It is a science fiction, futurism and fantasy oriented blog site.  That said the Changing the World article is breathless, even giddy, in its promotion of autism as superior thinking.  It features interviews with various neurodiversity promoters including online magazine writer and soon to be Penguin author Steve Silberman.  Neither Silberman nor the article's author, or anyone else referenced in the article,  mention that autism is in fact a disorder listed in the DSM and ICD manuals dealing with disorder.  No mention is made of the very severe challenges facing those with autism disorders.

Silberman has been busy writing articles online for several years promoting the neurodiversity,  alternative way of thinking picture that all too often is posted online, and in the mainstream media, as representing autism.  It has worked well for him and has landed him a book deal on autism and neurodiversity for Avery/Penguin to be published in 2013. Way to go Steve! Maybe you will land a movie deal too?

Bold prediction: assuming Silberman acknowledges the existence of those who actually have, and suffer from, the neurological, mental health disorder, soon to be officially recognized as Autism Spectrum Disorder, there will be nothing in Silberman's Penguin Neurodiversity Manifesto to help them. 

Wednesday, July 25, 2012

K.G. v. Dudek (Florida Medicaid Injunction Order): ABA Proven Effective, Medically Necessary Treatment for Autism and Autism Spectrum Disorder

Following are some significant excerpts, including court summaries of expert evidence in the proceeding, and findings of the US District Court in Florida K.G. v. Dudek,  on the status of ABA as a medically necessary, proven effective treatment for Autism and Autism Spectrum Disorder.  The expert evidence as summarized, and the conclusions of the court, will of course have no effect on the views of anti-ABA activists like Michelle Dawson, Dr. Laurent Mottron and their followers. I hope though that Canadian public decision makers, particularly MP Mike Lake, who I have copied with this blog commentary and himself a father of a 16 year old son with autism,  and the federal Conservative government in Canada will revisit the need for a Real National Autism Strategy to ensure that all Canadian children with autism and ASD have access to ABA treatment. I especially hope that parents of newly diagnosed autistic children who have been influenced by the often times irrational and non evidence based arguments of anti-ABA activists will speak to their children's health care professionals about the possiblity of ABA as a treatment for their autistic children. 

"ABA is "medically necessary" and is not "experimental" as defined under Florida administrative law and federal law. ... (p 11).

Dr. Vasconcellos, Dr. Bailey, and Dr. Mulick all testified that ABA is the standard means of treatment for autism and ASD. Dr. Vasconcellos testified that she prescribes ABA to all of her autistic patients and believes it would be medical malpractice not to prescribe ABA for a child with autism. Dr. Bailey testified that “we know ABA works. It’s been well established. It’s accepted in the medical community.” Furthermore, Dr. Mulick testified that the consensus in the medical community is that ABA has been the standard means of treatment for children with autism and ASD since the 1990’s, evidenced by consensus statements from the following sources: Centers for Medicare and Medicaid Services, United States Surgeon General Schachter, the Center for Disease Control and Prevention, the National Institute for Child Health and Human Development, the National Institute for Neurological Disorders and Stroke, the National Institute for Mental Health, the American Society of Child and Adolescent Psychiatry, the American Academy of Pediatrics, and the American Psychological Association. Kidder testified that she did not consider any of these consensus statements when determining the standard means of treatment for autism. In sum, the Court finds that AHCA’s failure to follow its own unwritten but formal standard practice for making treatment coverage decisions, failure to apply Florida’s definition for “experimental,” and failure to use “reliable evidence” as defined by Florida law, was unreasonable, arbitrary, and capricious. .... (pp 21-22).

The “reliable evidence,” as defined by Florida law, conclusively shows that ABA is not “experimental.” Plaintiffs have established through their expert witnesses that there exists in the medical and scientific literature a plethora of peer-reviewed meta-analyses, studies, and articles that clearly establish ABA is an effective and significant treatment to prevent disability and restore developmental skills to children with autism and ASD. Dr.Bailey testified that the four peer-reviewed meta-analyses listed at the end of the Hayes Report (two by Eldevik, one by Reichow, and one by Virues-Ortega) show that ABA is effective though they received scarce attention in the Hayes summary report. These metaanalyses included findings of large to moderate changes in IQ, intensive ABA intervention leads to positive medium to large effects in terms of intellectual functioning, language development, acquisition of daily living skills, and social functioning in children with autism and ABA is the treatment of choice. Dr. Bailey further testified about three additional studies (by Dawson, Zachor, Smith) that show that ABA is effective. For example, Dr. Bailey testified that the Zachor study is “well-conducted,” “well-respected,” “highly cited,” and “published in a good journal . . . with peer review,” and that the study concluded that the children receiving ABA “showed significantly greater improvements” than those children in the eclectic group. Further, Dr. Bailey stated that AHRQ did not acknowledge the significance of the Zachor study or its findings. Dr. Bailey testified that he is aware of 25 to 30 reviews of the literature and an additional 30 to 50 meta-analyses showing that ABA has been proven effective for children with autism. Notably, all the experts that testified for Plaintiffs and Defendant stated that they have never seen a study in the peer-reviewed literature where the authors concluded that ABA was ineffective as a treatment for children with autism or a study that characterized ABA as experimental. ... (pp 23-24)."

Tuesday, July 24, 2012

Medicare's Orphans: Dr. Melvin DeLevie On Canada's Archaic Approach To Autism Treatment

Medicare for Autism Now! is featuring a series of interviews in connection with the Medicare's Orphans series.  Interview 3 features Dr.  Melvin DeLevie a practicing British Columbia physician with extensive experience with autistic children.  As summarized on the Medicare for Autism Now! web site:

"Dr. Melvin DeLevie, long-time Vancouver paediatrician with extensive experience dealing with children with autism. This 20 minute interview is a powerful indictment of Canada’s archaic approach to the treatment of autism which is in stark contrast to the treatment of children with any other disease or disorder. He gives examples of why social services personnel are ill-equipped to deal with what is in-fact a medical condition. He eloquently expresses frustration with the “people in charge” who are both “blind and deaf” toward what he terms the “lost children”."

Monday, July 23, 2012

You Listen Mister: Best Autism Advice This Autism Parent Ever Received

Following is a re-posting of an earlier comment: Irrational Neurodiversity Ideology Harms Children with Autism Disorders. As the title indicates it is my personal opinion, not as a lawyer, which I am, not as a medical professional which I am not. It is my view as an autism parent, of an ideology that I feel is harmful to many children with autism disorders, particularly those most severely affected by their autism. For these children solid research and medical opinion has told us for several decades now that early Applied Behavior Analysis is an effective treatment for autistic children. Yet there is an ideology promoted in the mainstream media, and even by US government appointments to the IACC, which reflect the misconception that anti-cure high functioning autistic persons can speak on behalf of severely autistic children, other people's children. In the most extreme cases the Neurodiversity ideologues even discourage parents of newly diagnosed autistic children from seeking early ABA intervention for their children. When parents exposed to this irrational ideology turn away from early intervention they may be harming their autistic children.

I was fortunate, and my son Conor was fortunate, that not too long after his autism diagnosis I attended an autism parent meeting where I met a registered nurse named Dawn Bowie. Dawn's autistic son was a couple of years older than Conor. When I began expressing some of my doubts about early intervention, doubts inspired by reading Neurodiversity literature, Dawn Bowie responded as perhaps only a nurse can do. She looked me right in the eye and in a very firm tone said "You listen mister you get treatment for your son, if you can, as much as you can".

There weren't many autism treatment resources available in Fredericton 14 years ago when my son was diagnosed at the age of two. But I sought out the treatment that Dawn recommended and I became an advocate for autism services in New Brunswick along with Dawn Bowie and many other autism parents. As the parent of a now 16 year old son I don't know if he could have attended school all these years, or if he would still be living with us, if he had not received the ABA he has received and if we had not learned how to manage his behavior through our own efforts to apply ABA principles at home. 

Early effective ABA intervention for your autistic child. It's the best advice I received for my autistic son. Absolutely check with your child's treating professionals but I suspect you will receive the same advice ... get as much early ABA treatment for your autistic child as you can. It was the best autism advice this father of a severely autistic son ever received. 

My previous commentary on the irrationality of, and harm caused by, Neurodiversity follows. It includes references to an American Medical Association commentay in which Dr. Magaret Moon questions the ethics of parents refusing available effective ABA treatment for their autistic children, parents who have imbibed the anti-cure rhetoric.  My comment also includes an earlier reference to Dawn's advice ... the best autism advice I ever received. 

 Irrational Neurodiversity Ideology Harms Children with Autism Disorders 

The American Medical Association has a commentary titled Can Parents of a Child with Autism Refuse Treatment for Him? by Dr. Margaret Moon on its Virtual Mentor AMA Journal of Ethics site, in which Dr. Moon discusses a clinical case where parents of a 6 year old boy was being treated for an earache confirmed to the attending physician that the behavior he displayed during the visit reflect his autism diagnosis two years earlier. The doctor advised the parents of an opportunity for treatment for the autism disorder but the parents refused. because his son's condition was an example of neurodiversity and was not pathologic. Dr. Moon discusses the ethical implications of the parents refusal to provide available treatment for their son's autism disorder including the question whether child protection agencies should be contacted by a doctor confronted with such a situation: 

"When Dr. Pittman questioned Dayton’s parents about his behavior, they told her he had been diagnosed with autism at age 4. His development, they said, was delayed. 

She asked what treatment Dayton’s parents had sought for him, and the answer shocked her. They were members of the autism self-advocacy movement and believed that Dayton’s condition was simply an example of neurodiversity and was not pathologic. They clearly adored their son, doting on him during the clinic visit and telling Dr. Pittman how they home-schooled him after the public school system failed to meet his social and educational needs. They accepted Dayton as he was and were determined to provide him with lifetime care. 

 Dr. Pittman viewed Dayton’s situation differently. She knew that with proper therapy and medication his condition could improve considerably—but only if treatment were begun as soon as possible. She worked at a nearby autism clinic, where Dayton could probably qualify for long-term treatment. When she mentioned this to Dayton’s parents, they wanted nothing to do with it. They were adamant in their belief that Dayton’s condition required no medical intervention. 

Dr. Pittman had encountered many adult patients with culture-based opinions about their health problems that she found hard to understand, but this was the first time she’d disagreed so fundamentally with parents about a situation that she believed would harm their child by limiting his future opportunities. She fought the urge to reprimand them for what she considered their neglect of his debilitating developmental problem. Did their treatment constitute child endangerment, she wondered? Would she be justified in contacting a child protection agency? 

 Parents and doctors will have to wrestle with the ethical implications of a parent refusing treatment for a child's autism disorder. Personally I don't really see an issue. A parent has no more right to refuse available treatment for their child's autism disorder then they would to refuse treatment for their child's broken foot. To suggest otherwise is simply to express the belief that mental health disorders are not as important as physical health issues. That is in itself a form of discrimination against those with mental health disorders. 

 The parents in that clinical case commentary are responsible for what happens to their child and they must wear the blame for their refusal of available autism treatment for their child, treatment that could help their child live a better, fuller life. The parents refused treatment even though it was available and assistance was offered by the doctor. 

Blame also rests squarely on the shoulders of those who have promoted the Neurodiversity ideology from Jim Sinclair to Ari Ne'eman and the large media institutions like the CBC, CNN, and New York Magazine for promoting the Neurodiversity ideology which harms children with autism. As applied to autism Neurodiversity is fundamentally irrational at its core. 

 Neurodiversity is irrational in that it accepts that a person can receive a medical diagnosis called autism, embrace the diagostic label "autism", identify with "autism", and in the same breath reject autism as being a medical condition. Neurodiversity is pushed by some very high functioning people who have been diagnosed with mental disorders listed in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders. ND ideologues embrace the label of "autism" and yet reject the idea that autism is ... a medical disorder ... a mental disorder. 

When my son Conor was first diagnosed I read some of the ND literature, particularly commentary by Jim Sinclair. I was unsure whether to seek treatment for my son Conor or not. I attended a parents support group meeting where the topic was raised and I expressed my reluctance to seek treatment for my son Conor. I was fortunate because at that meeting was a registered nurse with a child with an autism disorder named Dawn Bowie. Dawn looked me square in the eye, pointed a finger at me and said "you listen mister, you get treatment for your son, if you can, as much as you can". 

I am a lawyer, a big guy who has seen a few things and I am not afraid of confrontation. Few people in my life have talked to me as Dawn Bowie did at that meeting about getting treatment for my son. She got my attention and I listened. Conor is much better off because Dawn had the guts to tell me, very emphatically, to snap out of it and do what had to be done to help him, to get treatment. The parents in the clinical case commented on by Dr. Moon did not apparently have a Dawn Bowie to read them the riot act. Many will also be exposed to Neurodiversity ideology, not just through internet bloggers but also through major media institutions that add a false air of legitimacy to this harmful ideology pushed by frequent big media interviews with very high functioning autistic persons who do not want to be cured. 

Even the administration of US President Barack Obama has legitimized this harmful ideology by promoting a very high functioning young man with Aspergers named Ari Ne'eman to sit on influential health and autism committees. Mr. Ne'eman has told the world that "WE", meaning all children and adults with autism do not want to be cured. He promotes the idea that autism and Aspergers are social conditions not medical conditions. 

Neurodiversity harms children with autism by promoting the view that autism should not be treated and influencing the decisions of parents such as those in the case commentary to refuse available autism treatment for their son. It is sad to think of the development opportunity lost by the boy with autism in the case study commentary by Dr. Moon. 

It is time for organizations from the CBC, CNN, New York Magazine to the Obama administration to stop romanticizing autism and to stop promoting the anti-cure nonsense of the harmful and irrational Neurodiversity ideology. Autism disorders are exactly that medical disorders, mental disorders. If treatment is is available parents of autistic children should seek effective, evidence based treatment from credible service providers for their children. If it is not readily available they should consider doing what was done in many states and provinces, including New Brunswick, they should advocate and fight for government sponsored autism treatment for their children. 

Do not subscribe to the Neurodiversity ideology. Your child with an autism disorder will pay the price if you do.

Monday, July 16, 2012

Meaningful Access: Yude Henteleff (2012) Critiques Full Inclusive Education as a Non Evidence Based, Discriminatory Philosophy and Recommends A New Paradigm

The image above is the cover page of the paper MEANINGFUL ACCESS, INCLUDING THE PROVISION OF A WIDE RANGE OF PLACEMENTS, AS AN INTEGRAL PART OF INCLUSIVITY IN EDUCATION by Yude M. Henteleff C.M., Q.C., LL.D. (Hon.). The paper is available in PDF format on the Atlantic Human Rights Centre web site by clicking on the title. 

I had the privilege of meeting Mr. Henteleff at the recent Atlantic Human Rights Centre inclusive education conference in Fredericton at which he presented this paper.  His earlier work on this subject provided a thorough analysis of Canadian jurisprudence, including Supreme Court of Canada jurisprudence, concerning the accommodation of students with special needs in inclusive education.  His earlier work was the road map I followed in trying to chart a path for my severely autistic, developmentally delayed son toward achieving a meaningful  education in the extreme inclusion Province of New Brunswick.  

Mr. Henteleff's latest work updates that road map and should be mandatory reading for anyone involved in the education of students in New Brunswick schools. I absolutely recommend it for parents and their legal counsel should legal proceedings be necessary to ensure the protection of their children's best interests in New Brunswick school. 

I was able to thank Mr. Henteleff face to face for his contribution to my son's positive education experience during the AHRC inclusive education conference in Fredericton. I would like to acknowledge that contribution again publicly in this commentary and say Thank You Mr. Henteleff.

I will not summarize Mr. Henteleff's entire paper in this comment.  Following though are some statements which he stated in his paper he strongly supports and principles derived from high legal authority in Canada and the United States. 

I humbly agree with the statements Mr Henteleff supports and with his interpretation of relevant legal authorities and the principles derived from them.  I have, in my own way, articulated these principles during my participation in the Mackay, Ministerial Committee and Porter Aucoin inclusive education reviews in New Brunswick and in more recent media appearances. 

These comments reflect the fact that full inclusion is a philosophy that requires regular classroom placement for all students regardless of their individual situations. As such full inclusion philosophical education practice discriminates by failing to provide an evidence based an evidence based determination of each student's best interests with respect to the place of learning.  It is a simplistic philosophy with an egalitarian feel good tone that makes "true believers" of otherwise learned educators.  

Following are some of the brief introductory comments by Yude Henteleff which highlight the problems with full inclusion, philosophy based education practices:

R. v. The Board of Education for the Region of York

This is a decision of the Ontario Special Education (English) Tribunal File #10. It was appealed to the High Court of Justice 63 O.R. (2d) 767 and to the Ontario Court of Appeal 69 O.R. (2d) 543 on issues unrelated to the issue of best interests. Accordingly, the decision by the Ontario Special Education Tribunal as to placement remains. 

The Tribunal in respect to segregation v. integration and the child's best interests found as follows: It is the firm opinion of this Tribunal that the wholesale integration of exceptional pupils into regular classes, solely on the basis of philosophical principle, untempered by due and informed consideration of each individual situation, is directly counter to the best interests of all pupils. [My emphasis] 

In The Journal Focus on Exceptional Children2, the authors, James A Kaufman and Patricia Pullan, explored a number of widely held myths about children with disabilities and special education. One of the myths they explored is the devotion to the ideology of full inclusion. They stated that the myth is appealing because of the simplicity (that is one placement for all students) and egalitarianism (students are not physically separated from the mainstream) so they are assumed to be integrated and treated equally. They stated that the consequences of this myth include the placement of students with disabilities in general education classrooms in which neither they nor their classmates can be well-served, and the abandonment of pull-out programs such as special classes in schools that were in fact the least restrictive environment most appropriate for such students.

Henteleff provides a thorough analysis of the relevant jurisprudence to support the critique of full inclusion practices.  He also goes beyond criticism and sets out the principles, all supported by the case law, and supported by education authorities and proposes a new paradigm for inclusive education, a paradigm which supports the legal requirements of meaningful access for all students including special needs students:

In order to assure that the best interests of SSN are met in its school system, provincial governments must establish a legal framework within its School Act for the application of the concept of meaningful access to educational services that incorporates the strands of Canadian jurisprudence to date including the international considerations which are relevant in the Canadian context. 

Meaningful access to educational services is the compilation of principles enunciated in the legal decisions, namely the paramountcy of education, the best interest of the child principle, and the right to necessary resources (to enable access) to the point of undue hardship. Such a context specific and substantive legal framework would be in line with the evolving Supreme Court of Canada jurisprudence of Berg, Eaton, Eldridge, Grismer, and Via Rail, and in light of US case law previously referred to, which has interpreted the concept of "meaningful access" in the education context. Accordingly, it is critical that provincial governments establish a clear framework for the application of the legal concept of meaningful access to educational services and that the objective to achieve inclusivity in the school system must incorporate the right to meaningful access. 

Meaningful access to educational services is achieved when SSN receive an education in a most enabling environment. A most enabling environment is one that: is based on correctly identified needs; is implemented by appropriately trained persons in a timely fashion, with input from caregivers and where appropriate the student; is carried out in an environment best suited to that student's needs, socially, physically, emotionally, mentally, behaviourally and cognitively;  provides those resources that reasonably enhances the student's ability to make the fullest use of the programs provided by the school system to all students;  and provides a range of placement options, each being particularly suited to meet the child's identified best interests.

Each strand as noted has the force of law. The foregoing strands collectively comprise meaningful access incorporating the fundamental principles emerging from the court decisions noted. Meaningful access, as above defined, is a legal paradigm that is context specific and which provides substantive remedy in accordance with the Charter and therefore positive outcome for all SSN.

It is critical that the School Act incorporates the right to meaningful access as above noted as an integral part of inclusion, so as to assure that all students with special needs receive the services they are entitled to in the most enabling environment and in a timely fashion. This will in turn assure that the social contract with every SSN, namely the receipt of all those resources that facilitate the fullest access possible to education services is fulfilled.

In the best interests of students with special needs, nothing less will do.

Sunday, July 15, 2012

Severe Autism and Education: Conor Doherty Votes Yes! to FLEXIBLE Inclusion

Conor receives what full inclusion advocates call a "segregated" education because he receives his ABA based instruction, for his autistic disorder, in a quiet location outside the regular classroom. (Although he does have many activities with other children for outings and other events, such as swimming, apple picking, visits to the Playhouse in Fredericton)

As his father, I consider the combination of individualized learning environment combined with group outings and activities to be an evidence based approach to accommodating Conor's severe autism challenges that is done in his best interests. In the yellow board picture Conor votes YES! to this evidence based, flexible inclusion approach that has worked so well for him.

Conor loves his schooling as it now is and loves attending school.  Summer vacation is difficult for Conor and he gets very frustrated at times.  One of the tools we came up with for managing his frustration is to have him write on a board the number of days until school with Conor changing it each day.  At 6 am every day Conor jumps up, unprompted, and changes the number.  It helps him understand that school, and the so called "segregated" education he loves, will return. 

Conor has been well accommodated with his individualized learning environment combined with ample opportunities to mix with other kids at school outings.  He loves school and he knows a lot more about his own needs then the full inclusion ideologues who dominate education policy in the current New Brunswick government and who would take the schooling Conor loves away from him.

Saturday, July 14, 2012

The Burden of Proof: IACC Director Insel's 2009 Statement On Autism Increases

"Based on the above mentioned research, approximately 53% percent of the increase in autism prevalence over time may be explained by changes in diagnosis (26%), greater awareness (16%), and an increase in parental age (11%). While this research is beginning to help us understand the increase in autism prevalence, half of the increase is still unexplained and not due to better diagnosis, greater awareness, and social factors alone. Environmental factors, and their interactions with genetic susceptibilities, are likely contributors to increase in prevalence and are the subject of numerous research projects currently supported by Autism Speaks.

The increase in autism prevalence is real and the public health crisis is growing. More families are affected by autism today then ever before."

Autism Speaks Official Blog, October 22, 2010, 
Before the Recent CDC estimate that autism now affects 1 in 88 children.

The Neurodiversity ideologues are doing it again.  

Each announcement of increased  rates of autism diagnoses (the past year saw the CDC revise its estimate from 1 in 110 to 1 in 88) brings the same, tired refrain about increases in autism: it ain't real babe.  The Neurodiversity ideologues recycle the explanations trotted out for each announced increased in autism rates: 1994 DSM diagnostic definition changes and increased awareness being the two most prominent. 

They have done so again in an article in Discovers "big idea" blog "The Crux" by Emily Willingham. Discover is the home of Neurodiversity writer Steve Silberman and the Willingham article was immediately embraced in an article by another Neurodiversity "science" journal: Boing Boing.  Boing Boing quickly  applied its scientific expertise and  reported, based on Willingham's opinions, that " It looks like the majority of the "increase" in diagnoses can really be attributed to the process of diagnosis itself"

No one denies that the two decade old diagnostic definition change and increased awareness factors, explain part of these increases, the issue is whether they explain them entirely or to what extent and whether the increased rates also reflect real increases, increases arising from environmental factors. 

Dr. Tom Insel is known to everyone involved in autism issues as the head of the IACC, the Interagency Autism Coordinating Committee.  He can not be attacked as being an "anti-vaxxer" or as an emotional, hysterical parent of an autistic child.  Dr. Insel had this to say in a December 18, 2009 interview by David Kirby:

"It looks like about 24 percent of the California increase can be attributed to something like a change in diagnosis criteria. They are beginning to use multiple diagnoses. So that children before, who were listed simply as mentally retarded rather than autism - but they had both - are now logged in with both. But that really caps out at around 24 percent. There’s probably another piece of this, which globally could be attributed to ascertainment. But that caps out at around 16 percent, or something like that. And when you put all of that together, you are still well below explaining 50 percent of the increase.

So what does that mean? It means that, as far as I can tell, the burden of proof is upon anybody who feels that there is NOT a real increase here in the number of kids affected. Because all of the evidence we have up until now says that, well there are what we could call – I wouldn’t call them ‘trivial’ factors – but they are factors that are not related to incidence, but would be simply related to prevalence, like ascertainment. But they don’t really explain away this huge increase. "

This tells you that, you really have to take this very seriouslyFrom everything they are looking at, this is not something that can be explained away by methodology, by diagnosis. Some piece of it can, but the whole thing can’t."" 

It fits Emily Willingham's Neurodiversity ideology to recycle the diagnostic change/substitution and increased awareness factors.  What we don't need is yet another recycling of these long understood factors which undoubtedly explain part of the increases in autism rates.  What we do need is a focused environmental research strategy as advocated for In A Research Strategy to Discover the Environmental Causes of Autism and Neurodevelopmental Disabilitiesan editorial in a recent issue of Environmental Health Perspectivesauthors Philip J. Landrigan, Luca Lambertini and Linda S. Birnbaum.

Landrigan, Labertini and Birnbaum summarized the evidence for the "proof of principle" that early exposures during “windows of vulnerability” that open only in embryonic and fetal life and have no later counterpart can cause autism.  They review the large numbers of synthetic chemicals, many of them untested, some of which are known to have toxic properties. The authors proposed a strategic approach to researching possible environmental causes of autism by focusing:

"research in environmental causation of NDDs on a short list of chemicals where concentrated study has high potential to generate actionable findings in the near future. Its ultimate purpose is to catalyze new evidence-based programs for prevention of disease in America’s children."

We don't need more recycling of the known diagnostic change and ascertainment factors that undoubtedly explain part of the incredible increases in autism diagnoses. What we need is leadership by the IACC and other major autism focused health agencies to encourage a stragic approach to determine  possible environmental factors involved in causing the various autism disorders. 

What we need is to find out what has been, and still is, happening to our children.  Until we do the burden of proof is on those who push the non-environmental factors which explain only part of the incredible increases in autism diagnostic rates.

Thursday, July 12, 2012

I Applaud The Canary Party's Real World Challenge to the IACC

The Canary Party made a very significant statement at the Interagency Autism Coordinating Committee (IACC) meeting this week.  It's activists questioned, with their  "backs to the speakers" demonstration, and the written and oral presentations by Mark Blaxill, the direction, or lack of direction, of the IACC.  The essential question is where is autism research and where is it going? Where is the determination to find causes, all causes, treatments and cures, for autism disorders?  

Blaxill and the Canary Party asked the IACC to stop fiddling while increasing numbers of children are diagnosed with autism disorders.  The IACC appears to have joined the pseudo scientists who apply rigorous standards, and in some cases, ridicule, to any attempt to research environmental causes of autism.  Meanwhile, assertions that the shocking increases in autism diagnoses are due entirely to diagnostic definition changes made two decades ago and increased social awareness, pass without any critical analysis.  The IACC does not appear to have made a concerted effort to deal with the growing autism crisis.

I am pleased to see the Canary Party standing up and holding the IACC accountable.  As a Canadian father with a severely autistic son I have always appreciated autism research by US based researchers like Lovaas and his associates that developed ABA as an evidence based method of treating and educating autistic children and adults and in managing the challenging behaviors of those with actual severe autism disorders. Canada has no serious autism research being conducted .... none at all. No, I don't count the genetic research that, despite changing the test rules have failed to pass any test by providing research of any value to increasing our understanding jof autism causes or treatments. And I do not count the repeated efforts of the Mottron Dawson research team to prove that autism is a different, better way of thinking. 

I have recently applauded the decision to continue the IACC in the belief that it was genuine in its efforts to address all aspects of autism disorders including environmental causes and treatments.  I can't take issue though with the points made by the Canary Party and the oral and written submissions of Mark Blaxill.  We are no further ahead today in understanding causes of autism disorders or finding new treatments than when my 16 year old severely autistic son was diagnosed 14 years ago.   

Blaxill and the Canary Party activists have challenged the IACC members to stop playing games.  Autism is serious, our children's lives matter. What happened to our children and what can be done to help them matter. The Canary Party has asked the IACC to start taking autism seriously, try to fulfill its mandate and stop the spin doctor nonsense.  Get the job done or get out of the way.  

I applaud the Canary Party for standing up for autistic children and adults and their families. 

Monday, July 09, 2012

Medicare for Autism Now Interviews Harold Doherty

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

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

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


Autism, Killarney Lake and The Conor Gift

Last night there were no pictures taken but Mom and Dad were walking the trail around Killarney Lake on either side of Conor when he put his arms through each of ours and walked along  looking back and forth at Mom and Dad with a huge smile, even a bit of a giggle at times. Loads of affection for his Mom and Dad.  It is the Conor gift.

Conor will not be featured in a highlight reel of autistic young people performing amazing feats.  He will not be going to work at Dr. Laurent Mottron's lab as one of his allegedly "typical" autistic persons.  He will not stand before national media organizations in Washington, serve on US national committees or pose for the New York Magazine and tell the world that autism is a personal identity not a disability.  

The pictures above have been posted on this blog site for some time.  The picture of Conor by himself is from one of his favorite spots ... Killarney Lake.  The other two show Conor's amazing smile which, by itself, is always a gift for Mom and Dad.    Despite Conor's type of autism, the actual disability/disorder type, he brings great joy to his Mom and Dad as he did last evening at Killarney Lake. His autism, unlike Ari Ne'eman's, is a disorder and his smile is not a gift brought courtesy of his autism disorder.  It is the Conor gift. 

Sunday, July 08, 2012

Autism Society NB Advocacy History: Saving The Stan Cassidy Centre Autism Team

It is difficult to say, as an outsider, what factors weigh most heavily in the minds of public decision makers when they make decisions which impact a community, especially a vulnerable community like children with tertiary level care requirements.  

In May 2005 it was announced that a very valuable resource was going to be closing in New Brunswick. There would be no new patients accepted for treatment by the Stan Cassidy Centre for Rehabilitation tertiary care autism team.  The announcement sent shock waves through most of New Brunswick's autism community, at least  outside Saint John where that city's CACI leader Debbie McDonald was interviewed on CBC radio and took the position that the closure of the Stan Cassidy Centre autism team was a good thing: 

"wow this is too hard to believe … but in some ways I think its kind of good that the Stan Cassidy is kind of toning down its autism um efforts and kind of focusing on what they do really well, which is rehab you know rehab care center for a … for a variety of issues"

In the rest of the province, from Moncton to Maugerville to Fredericton to Miramichi and to points in between the reaction was different. Under the leadership of the Autism Society of New Brunswick we voiced our outrage as parents of autistic children,  and, to their full credit, the decision makers listened and responded meaningfully. The Stan Cassidy Centre tertiary care autism team was brought back from death's door and is today a vitally important element in the delivery of New Brunswick's autism service.  The Centre's role is even more important as an autism resource now that the Province of New Brunswick, under the Alward-Carr-Porter government,  has walked away from the internationally recognized UNB-CEL Autism Intervention Training program as the training agency for early intervention workers and education aides and resource teachers working with autistic children and substituted in its place in house training with an inevitable loss of quality and integrity. 

The letters that follow are a small but significant sample of the Autism Society New Brunswick advocacy that was exerted in order to revive the Stan Cassidy Centre's tertiary care autism team.  It was the kind of effort that is required of parents today, all of us, dinosaurs and rookies alike, if we are to preserve NB's autism gains in early intervention and education and accomplish something in adult  autism residential care and treatment.  An adult residential treatment facility is needed in Fredericton near our province's autism expertise.  

We must revive the spirit that let to our initial gains to protect those gains to the extent possible and to protect the lives of our autistic children as they .... and we ... grow older.  Governments will often ignore autism problems unless parents speak up.  

We have done it before and we can do it again. 


Dear Minister Robichaud: 

It has come to our attention that officials at the Stan Cassidy Centre for Rehabilitation have unilaterally decided to stop accepting referrals of pediatric patients with Autism Spectrum Disorder (ASD). Our understanding is that currently 20% of the pediatric referrals to Stan Cassidy are for those with ASD.Needless to say, if this decision is allowed to stand, it would be a devastating development for those families that rely on this centre for services such as speech and occupational therapy. These families would be left without services in some cases and forced to fend for themselves. It would also leave a hole in an already insufficient network of services for individuals with ASD.

We find it unacceptable that the Autism community was not consulted on this decision. We request that this decision be reversed until such time as we in the Autism Community have had an opportunity to make the case that this decision will unduly punish many individuals who rely on the treatment they receive at the Centre.

I would respectfully request an immediate meeting with members of the Autism Community including representatives from the Autism Society of New Brunswick to discuss this matter.

Your prompt attention to this issue would be greatly appreciated. 


Luigi Rocca

Autism Society of New Brunswick


NB Telegraph-Journal | News - Other
As published on page B6 on July 13, 2005

Changes made at autism treatment centre panned


Parents of autistic children say they want a sit-down with the health
minister before any changes are made to the way autistic patients are
treated at Fredericton's Stan Cassidy Centre - New Brunswick's only
neurological rehab centre.

While the centre will continue to treat autism patients and those on its
waiting list, pediatricians were recently asked to stop referring new

"It baffles me that they can turn their heads and make these kinds of
decision without any consultation," says Luigi Rocca, president of the
Autism Society of New Brunswick.

But Dr. Ron Harris, administrative director of the Stan Cassidy Centre for
Rehabilitation, says the decision was necessary.

"The problem we face is one of sustainability of service," he said, adding
that pediatricians will be asked to continue making referrals.

The centre's children's program provides treatment for children with brain
and spinal injuries, degenerative muscular diseases, complex cerebral palsy
and complex developmental delays.

Up to now, Dr. Harris said, the centre's been lucky to find professionals
who have been able to combine their expertise in rehabilitation and learn
about autism.

But it's a situation he doesn't think will last.

Rehabilitation and treatment for autism patients require whole different
sets of skills and training, he said.

"We're going to go out there and recruit traditional replacements who have
the skills necessary to take a six-year-old with a brain injury and provide
service to them - the dilemma that's created is the services we've provided
for autism need to be re-developed."

Autism patients would be better served by "a team that's dedicated to the
kind of challenges autistic spectrum children present," he said.

It will take a year to get through the waiting list they already have, and
over the next 12 months, the centre will be working with the province, the
health authority and other major stakeholders to help develop a new system
of care for autistic children.

Still, Mr. Rocco worries about the decision.

"I'd like to see them reverse the decision and consult with our
representatives to talk about a plan. And if Stan Cassidy is not going to be
able to work, we need a plan before they cut off their services to autistic
children to make sure there is going to be a seamless transition."


NB Telegraph-Journal | Readers' Forum

As published on page A7 on July 19, 2005

Centre's expertise valued by autistic community

The following letter was sent to Ron Harris, the director of the Stan Cassidy Centre in Fredericton:

I am a parent of a child on the Autistic Spectrum Disorder. I am deeply distressed to hear Stan Cassidy will no longer accept referrals or serve this population of children. I implore you to reconsider. Your decision to no longer provide services to our autistic children will have a profound and direct impact on the quality of life of our children.

For parents who were fortunate to have some intervention from the Stan Cassidy Pediatric Team, it meant the lives of their children improved to the point where they learned skills to cope within a school environment. It also gave parents the tools to teach skills, thus improving their children's lives at home.

Eliminating this service is a an absolute deal breaker.

Our older children for the most part have no service, and for policy makers within your organization to eliminate such an essential service will only serves to increase the burden on parents who are already stretched to the max.

Please recognize the consequences of your decision. It will be detrimental on the lives of autistic children and their families.

I would like to add, your pediatric team of professionals always gave me hope, encouragement and a direction that would improve the quality of life for my child. Without their guidance and direction, my child would not be where he is today.



Daily Gleaner | Readers' Forum
As published on page C7 on July 19, 2005
Decision on autistic children doesn't add up
This is a copy of a letter sent to the Stan Cassidy Centre for Rehabilitation, pertaining to their change of mandate.
When first I heard of the decision to discontinue services to autistic children, I assumed, giving you the benefit of the doubt, that budgetary constraints had motivated this disastrous and hurtful determination.
Now that I have read your press release, in which you rationalize this decision on the basis that the skill sets required to provide services for autistic children are different than those required for typical treatment provided by the centre, I am stunned.
You are discontinuing a vitally important health and education service without ensuring that a replacement model of service delivery is available.
You offered the absurd rationale that these services are being discontinued because they are not typically provided, and that it will be difficult to find the people with the skills to provide the service.
As someone involved in the autism community, I know you have lost some of those skilled personnel, and some potential personnel, solely because of your decision to discontinue services to autistic persons.
Your excuse has become a self-fulfilling prophecy.
You attempt to reassure us that a new model will be developed to replace the existing model for delivery of the services previously provided by the centre.
After breaking trust with the autism community, you now want us to trust you when you assert that, somehow, a replacement model will be developed when you have no authority or means to provide such a model, other than the one which you are now discontinuing.
Your re-assurances ring as hollow as the excuse you offered for discontinuing these services.
Harold L. Doherty Fredericton

NB Telegraph-Journal | Readers' Forum
As published on page A7 on July 18, 2005

Children with autism have been let down

It has been brought to my attention that services provided to autistic children by the Stan Cassidy Centre for Rehabilitation have been discontinued effective June 21, 2005. I have no knowledge of under what circumstances this decision was made, and am deeply shocked and dismayed.

To further my dismay, no one from the autistic community was consulted or made aware of this decision. Nine years ago, the Stan Cassidy Centre provided my autistic son the benefit of a multi-disciplinary team assessment, recommendations for his early intervention worker, and our family with the tools he needed for neurological rehabilitation in the form of intensive behavioural intervention. Stan Cassidy provided our son with direct therapy every three weeks until he reached the age to move into the Regional Health Authority Paediatric Rehab Team. Since he has been school age he is under the services of the Extra-Mural Program. Stan Cassidy was a vital link to proper interventions for the autistic population.

Stan Cassidy's multi-disciplinary tertiary team travelled the province, into the rural and remote areas providing assessments and recommendations to parents, schools, local paediatric rehab staff, etc. It is a vital and much needed service.
. The number of autistic children on the caseload at Stan Cassidy must have been high, which further perplexes me as to this decision. Dr. Harris is the executive director of Stan Cassidy, and has been involved in the autism community sitting on various committees. I know because I sit on these committees with Dr. Harris.

Again, children with autism have been let down, and a vital link in the chain of services broken. I would like to know what prompted this decision, and full disclosure made to the public and autism community.


October 4 2005

Rehab centre to treat autistic kids 


Children with autism will continue to be treated at the Stan Cassidy Centre for Rehabilitation. The board of directors of River Valley Health last week reversed a decision made earlier this year - at the administrative level - to stop treating children with autism who do not have a physical disability. The policy was to take effect in 2006. "We're elated," said Luigi Rocca, president of the Autism Society of New Brunswick. "We weren't at all happy with the original decision," he said.

Autism is a serious neurological disorder that typically appears during the first three years of life and has a profound effect on communication, social interaction and sensory integration. Autism, an incurable condition believed to be genetic in origin, affects about one in 500 individuals worldwide and is four times more common in boys than girls. Intense behavioural therapy has been found to help improve social and learning abilities, but experts say that for most autistic people, the condition continues to have some impact throughout life. The original decision to discontinue treatment of some children with autism was announced in May. At a recent meeting of more than 30 stakeholders from across the province, John McGarry, president and CEO of River Valley Health, apologized for the lack of dialogue that led up to that May announcement. 

The Stan Cassidy Centre for Rehabilitation is a tertiary care centre that provides services to children across the province in rehabilitation including speech language pathology and occupational therapy. Diane Morrison, senior vice-president of River Valley Health, said the centre has treated children with autism for many years and built up a level of expertise. "They were looking at their resources and how the resources were being utilized," she said about the initial decision. "Like most services there was more demand than you have the resources to meet." Children with autism represent about 20 per cent of the case load at the centre and required more than 20 per cent of resources to treat, she said. Morrison said it was initially thought that that children with autism could be better served elsewhere, particularly children without a tertiary rehabilitation requirement. If a child with autism did have an accompanying rehabilitation requirement they would still have been seen at the centre, she aid. Morrison said the meeting with stakeholders was positive. Following that meeting, and after further discussion within the organization and at the board table last week, the decision was made to continue the service, she said. 

The board motion to continue the service also called for the creation of a provincial working group to develop recommendations that will help ensure the Stan Cassidy Centre's autism services are sustainable and integrated into treatment across the province. Morrison said it was concerns about sustainability that prompted the May announcement. She said if the centre has just one speech language pathologist and one occupational therapist then the service is fragile. "We need to make sure that we can put in place plans for sustainable service," she said. "We are trying to take systemwide approach to this." Morrison declined to comment on whether the regional health authority would need additional funding from the province to make the autism service sustainable. "I don't want to presuppose the recommendations to come out of the working group," she said. Another meeting with stakeholders is planned for Oct. 14. 

Rocca said the dispute has highlighted the overall lack of resources allocated to autism in New Brunswick. The Stan Cassidy Centre for Rehabilitation does not have enough resources on its own to deal with autism, he said. Rocca said that stakeholders are pleased that when they complained they were taken seriously by officials at River Valley Health. He said they quickly reversed their decision and did not let it drag on for months. "We are starting a meaningful dialogue," said Rocca. "We will be involve in finding a solution. "We hope we get the same response from the provincial government."