Ontario Children Waiting Too Long For Access To Autism Programs - Ontario Auditor General Report 2013

News Release

For Immediate Release                                                             December 10, 2013

CHILDREN WAITING TOO LONG FOR ACCESS TO AUTISM PROGRAMS, AUDITOR GENERAL SAYS

(TORONTO) Screening for autism is often occurring late, and children who are diagnosed then face long waits for access to some of the programs that could help them, Auditor General Bonnie Lysyk says in her 2013 Annual Report. In addition, certain services are not being directed to those that may benefit the most.

“The Ministry of Children and Youth Services has quadrupled autism funding over the last decade, but there are still more children with autism waiting for government-funded services than there are chil­dren receiving them,” Lysyk said today following the release of the Report.

Intensive Behaviour Intervention (IBI) is the Ministry’s primary autism program, and the Ministry has also introduced several other programs, including applied behavioural analysis (ABA)-based services, and respite programs.

The audit found that children with autism are diagnosed in Ontario at a median age of a little over 3 years, later than the screening period of 18 to 24 months old endorsed by the Canadian Pediatric Society for children with risk factors. Then, due to long wait lists, Ontario children do not typically start IBI until almost age 7. Research has shown that children who start IBI before age 4 have better outcomes than those who start later. In addition, although scientific research shows that children with milder forms of autism have better outcomes with IBI, the program is currently available only to chil­dren assessed with more severe autism.

Following are some of the Auditor General’s other significant findings:

•    ABA-based services, the only type of funded therapy available to children with mild to moderate forms of autism, allow a child to work on only one goal at a time and may not be sufficient for those who have many behavioural problems or goals to achieve. After achieving one goal, the child returns to the bottom of the wait list.

•    The lead service agencies decide how to allocate Ministry funding for IBI between two service-delivery options: direct service, where the child receives service directly from a service provider at no cost; or direct funding, where the family gets funds from the lead agency to purchase private services. Wait times for IBI services can differ significantly between the two options and among regions. In one region in 2012, the average wait for IBI services under direct funding was five months longer than under direct service. In another region, the situation was reversed.  

•    Children discharged from IBI services in 2012/2013 under the direct-funding option received on average almost one year more of services than those under the direct-service option (35 months versus 25 months). As well, children receiving IBI under the direct-service option often received fewer hours of therapy than they were approved for.

•    Children transitioning to high school and beyond receive minimal support.

•    Since 2006, the Ministry has reimbursed up to 60 individuals a total of $21 million for the cost of IBI therapy and other expenses outside of the regular service system. Per child, this represents more than double the value of services that a child in the regular service system typically receives.

For more information, please contact:

Bonnie Lysyk

Auditor General

(416) 327-1326

For more information and to view the full 2013 Annual Report, please visit 

www.auditor.on.ca

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Autism Research Progress To Date In Two Words: Lovaas, ABA

Research to date benefiting persons suffering from autism disorders can be summed up in two words: Lovaas, ABA. The work done by Dr. Ivar Lovaas has been applied successfully for decades as reported by the US Surgeon General's office (1999) and by the American Academy of Pediatrics (2007), reaffirmed (2010):

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4

American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

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Conor Debunks TWO Autism Myths Eh!

Yesterday was Canada Day and Conor sported his Team Canada shirt to celebrate.  He also debunked not one but TWO autism myths.  Conor has received ABA based intervention at school for 8 years.  Yet, contrary to the myth that ABA causes discomfort and harm to persons with autism disorders,  Conor shows his terrific smiles again ( see also side bar on this blog) debunking that nonsense yet again.  He also debunks the myth that people with autism disorders do not like hugs and his Mom was very happy to assist in the demonstration!

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ASfAR Early Autism Intervention Review: ABA Only Autism Intervention to Receive Highest Rating of E: Established Based on Evidence

The Australasian Society for Autism Research has just released "A Review of the Research to Identify the Most Effective Models of Practice in Early Intervention for Children with Autism Spectrum Disorders" which assesses the research evidence in support of the various early autism interventions and rates the interventions according to the level of evidence base in support of each intervention.  As with every other major research review of the effectiveness of early autism interventions only ABA, applied behavior analysis, received the highest rating:

All credible reviews of autism interventions from the US Surgeon General to the American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders (2007, confirmed 2010) have rated ABA highest of all early interventions for autism disorders. Only ABA has consistently, as in this Australiasian review, been placed in the highest category in this case described as "Established based on Evidence".  This review, like all other reviews of the research literature before it, is unlikely to change the minds of the anti-ABA ideologues but it is important as one more tool to support political and legal advocacy aimed at providing education and health benefits for autistic children and adults.  Thank you to Dr. Jon Brock a member of the ASfAR executive committee for highlighting this new research report via Twitter. 

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ABA Treatment for Autism: America Leads, Lets Catch Up Canada, Lets Get Moving Again!!

At one time the argument might have been made that Canada led North America in terms of provision of evidence based treatment for autism.  Strong parent advocacy had made gains in encouraging provincial governments in British Columbia, Alberta and New Brunswick to provide Applied Behavior Analysis treatment. Our federal government, however, refused to get involved in any meaningful way and the Harper government played politics with the National Autism Strategy. The pitiful National Autism Symposium was postponed to allow the deck to be stacked with anti-ABA advocates and to weed out ABA advocates including me.  Here in New Brunswick our successful provincial program for early intervention based on the recognized (Eric Larsson, David Celiberti) UNB-CEL Autism Intervention Training program has  been abandoned at both the early intervention and school levels in favor of  in house autism intervention "training". In New Brunswick gains made are being abandoned, in Canada federally they never started.  In the Courts our Supreme Court of Canada, apart from a human rights and statutory analysis,  opined in Auton that ABA was an "emergent" therapy, notwithstanding earlier findings by the US Surgeon General, among other prominent authorities, that ABA effectiveness as an autism treatment was backed by 30 years and hundreds of studies.

Our good neighbors to the south, however, are taking autism disorders more seriously with more states requiring insurance providers to include ABA treatment and a 2012 federal judge ruling ordered that Medicaid cover ABA treatment in Florida.  Now Autism Votes, an Autism Speaks initiative, reports that the US federal government has concluded that ABA is primarily a medical, not just educational, therapy with the result that autistic persons among the 8,000,000 US federal employees will be eligible for ABA treatment under their medical coverage: 

Autism Speaks Hails Landmark Federal Decision Calling Key Autism Therapy a ‘Medical’ Service Eligible for Insurance

NEW YORK, NY -- Autism Speaks hailed today’s announcement by the federal government, the nation’s largest employer, that Applied Behavior Analysis (ABA), the most widely used behavioral intervention used to treat autism, is a “medical” therapy that qualifies for health insurance coverage, rather than an “educational” service.

The decision by the U.S. Office of Personnel Management (OPM) involves health insurance coverage provided to the nation’s eight million federal employees, retirees, and dependents, under the Federal Employees Health Benefits (FEHB) Program. It could have even more far-reaching implications on the health insurance benefits provided all Americans living with autism, as it will be much harder for insurance companies to continue denying coverage for ABA treatment.

. 

“The OPM decision directly contradicts a long-standing insurance industry claim that ABA therapy is not ‘medical,’ but rather ‘educational’ - provided by the schools at taxpayer expense,” said Peter Bell, Autism Speaks executive vice president for programs and services. “Now, tens of thousands of families will have better access to more affordable, critical ABA treatment.” 

The decision was rendered in the form of guidance to insurers who participate in the FEHB Program for policies that will be renewed or issued starting in 2013. The OPM decision does not require the insurers to cover ABA, but rather allows them to offer the coverage as it does many other medical treatments. The guidance reads: “The OPM Benefit Review Panel recently evaluated the status of Applied Behavior Analysis (ABA) for children with autism. Previously, ABA was considered to be an educational intervention and not covered under the FEHB Program. The Panel concluded that there is now sufficient evidence to categorize ABA as medical therapy. Accordingly, plans may propose benefit packages which include ABA.”

Autism Speaks has fought to provide families insurance coverage for ABA therapy through state-regulated plans, self-funded group plans that are regulated under federal law, the FEHB Program, and TRICARE for military families. In each instance, opposition to covering ABA treatment has been based in large part on the claim that ABA is educational, rather than medical."

In Canada our provincial government health care providers defined autism intervention as a social service rather than a medical necessity helping it avoid responsibility for autism coverage in the Courts. Canada still has an autism advocacy movement at work trying to right the Canadian autism ship which has floundered on the rocks of indifference.  Medicare for Autism Now! has been fighting hard to encourage our disinterested federal government to take autism seriously, meet with the provinces and get effective ABA treatment covered for autism under all provincial health care legislation.  

Wake up Canada! We are not falling behind in autism treatment we have already fallen way, way behind.  Get behind Medicare for Autism Now! and provide your support, get involved.  When we wave the Canadian flag this July 1st lets remember our autistic children in need of effective ABA treatment. If our American friends can wake up and address the autism crisis that confronts us all surely we Canadians can do so too,  EH?

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US Federal Judge: ABA Proven and Highly Effective Treatment of Children with Autism

It is hard to believe that in 2012 a government agency with responsibilities for the provision or administration of health care could take the position that ABA is an "unproven" treatment for autism.  That was the justification though of the Florida Agency for Health Care Administration in refusing to provide Medicaid coverage for ABA treatment for three persons with autism.   As reported  by the Miami Herald US Federal Judge Joan Lenard disagreed and ordered the FAHCA to provide the Medicaid coverage for the applied behavior analysis treatment: "U.S. Judge Joan Lenard ruled Friday that applied behavioral analysis be covered by Medicaid....Lenard held that ABA was a proven and highly effective treatment of children with autism."

Apparently the Florida Agency for Health Care Administration is not familiar with authorities from the US Surgeon General to the American Pediatric Association and  a number of state agencies that have reviewed the scientific literature and found ABA to be the most evidence based effective treatment for autism.  Or perhaps they   accidentally  subscribed to updates from anti-ABA activists Michelle Dawson and Laurent Mottron who have appeared (often) in the media and in Canadian legal and political proceedings in a prolonged and determined effort to prevent Canadian autistic children from receiving ABA treatment for their autism disorders.    Regardless, US Federal Judge Joan Lenard, in addition to issuing an order directing the agency to provide Medicaid coverage for ABA, has also educated the agency on the benefits of ABA treatment for children with autism disorders. 

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ABA Benefits for Autism: Association for Science in Autism Treatment (ASAT) Educates LA Times Alan Zarembo

The attached letter was written by ASAT Board member Sabrina Freeman Ph. D., and Secretary Florence DiGennaro Reed, Ph. D., BCBA-D to the LA Times Alan Zarembo who did such a poor job (in my humble opinion) reporting on autism issues in a recent LA Times series.  In the letter Freeman and Reed attempt to educate Zarembo about the scientific, evidence based benefits that ABA has been demonstrated to bring to autistic children.  

I don't know if a superficial mainstream media reporter is capable of  understanding the information presented in the letter or if he would make the effort to understand.  I applaud ASAT for trying to break through Zarembo's self constructed brick wall of ignorance and educate him about the evidence basis behind ABA, an intervention that has helped so many autistic children. 

ASAT Responds to LA Times Story “Families Cling to Hope of Autism Recovery”

Monday, January 30, 2012

Dear Mr. Zarembo:

We are writing to you regarding your article entitled, “Families Cling to Hope of Autism Recovery” (the Los Angeles Times, December 15, 2011). We appreciate your time and effort in highlighting the work of Dr. Lovaas and the larger field of applied behavior analysis. We especially appreciate your advocacy of science as the means to evaluate the effectiveness of any treatment.

While you acknowledge some positive benefits of applied behavior analytic treatment, your emphasis ignores a large body of research indicating that children who receive Early Intensive Behavioral Intervention (EIBI) benefit significantly relative to those children who do not receive EIBI. We ourselves acknowledge that there are gaps in the science of autism treatment, including EIBI; however, we respectfully disagree with your presentation of the outcomes. We are unaware of other treatment protocols that have been studied and replicated to the same degree as EIBI. Unfortunately, many other treatments are marketed as “cures” without evidence of benefit. As such, EIBI represents best practices for people with autism. While you rely on the AHRQ report in your article, we wish you had also highlighted that treatments based on the principles of applied behavior analysis have been endorsed by the U.S. Surgeon General,1 National Institutes of Health,2 the National Research Council,3 the National Standards Report4 published by the National Autism Center, and others. 5Although we agree that additional research is needed to develop and refine EIBI and other science-based approaches, your article leads readers to conclude that the high cost and burden of a forty hour-a-week requirement to replicate the positive outcomes from the scientific literature is too high a cost for society. We advocate for research funding to identify aspects of treatment that are most important for improving function. Until that time, though, children with autism deserve access to high quality treatments based on our current understanding of science.

The science of applied behavior analysis and its application to autism treatment are often portrayed inaccurately in the media. Unfortunately, we believe your story contributes to further misunderstanding and misconception. The potential risk is that caregivers will delay pursuing empirically-supported, effective treatment. We suggest that rather than advocate denial of effective autism treatment, we should acknowledge the true state of science in autism intervention and advocate for access to effective treatment by families. It is important for parents and caregivers to access accurate information regarding autism treatments so that they may make wise decisions for their children. For more information, please visit http://www.asatonline.org/resources/autismtreatments.htm.

Sabrina Freeman, Ph.D.
Board Member, Association for Science in Autism Treatment


Florence D. DiGennaro Reed, Ph.D., BCBA-D
Secretary, Association for Science in Autism Treatment


References 
¹U.S. Department of Health and Human Services (1999). Mental health: A report of the surgeon general. Rockville, MD: U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, National Institutes of Health, National Institute of Mental Health.
²Strock, M. (2004). Autism spectrum disorders (pervasive developmental disorders). NIH Publication No. NIH-04-5511. National Institute of Mental Health, National Institutes of Health, U.S. Department of Health and Human Services, Bethesda, MD, 40 pp. http://www.nimh.nih.gov/publicat/autism.cfm
³National Research Council (2001). Educating children with autism. Committee on Educational Interventions for Children with Autism, Division of Behavioral and Social Sciences and Education. Washington, D.C.: National Academy Press.
⁴National Autism Center (2009). National Standards Report. Randolph, MA: National Autism Center.
⁵New York State Department of Health (1999). Clinical practice guideline: Report of the recommendations. Autism/pervasive developmental disorders, assessment and intervention for young children (age 0-3 years). Albany, NY: NYS Early Intervention Program.

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

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


Medicare's Orphans. from MedicareForAutismNow on Vimeo.

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

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

Saturday, March 28, 2009

Autism in the Courts in Canada - What Auton Means

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

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

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

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

The CCPI analysis of the Auton decision follows in full:

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

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

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

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

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

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LA Times Gets It Right: ABA Is An Autism Treatment Worth Funding

I am a frequent critic of the mainstream media's tendency to misrepresent autism disorders. The mainstream media routinely presents feel good stories of autistic accomplishments, painting autism as merely a different way of thinking and speculating that many of histories great geniuses were probably autistic.  Discussion of autism treatments ranges from riding horses in Mongolia to swimming with dolphins.  More serious mainstream media treatments of autism treatments will acknowledge that early intervention is important for successful outcomes without mentioning ABA, applied behavior analysis, the most solidly evidence backed treatment shown for many years to result in a number of intellectual, language and behavior gains in autistic children who receive early intensive ABA intervention.

I have criticized all aspects of mainstream media misrepresentation of autism including the tendency to hide the evidence based effectiveness of ABA known for many years and confirmed by authorities from the US Surgeon General to the American Academy of Pediatrics.  It is only right that I acknowledge, with gratitude, when a mainstream media institution gets it right as the LA Times has done with its clear, straight to the point,  statement about the importance of ABA as a treatment for autism disorders:

"An autism treatment worth funding


Editorial


A California bill would require insurance companies to cover the cost of applied behavioral analysis for the autistic. It's good policy.


September 30, 2011


State law requires insurers to include coverage for autism in comprehensive healthcare policies. Now, lawmakers want to go a step further, requiring coverage of a particular autism treatment: applied behavioral analysis. Insurers are resisting. They don't question the effectiveness of the therapy; they just say it doesn't fit the definition of "medical" treatment. Their position reflects how crucial parts of the healthcare system are wedded to the status quo, regardless of what's best for patients. State lawmakers have passed a bill to overcome the insurers' resistance, and Gov. Jerry Brown should sign it."

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Laurent Mottron's Dangerous Anti Autism Cure Beliefs Resurface

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

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

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

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

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

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

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

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

....

b) The testimony of Dr. M

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

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

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

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

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

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

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

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Looking for Helpful Autism Information Online? Start With ASAT, the Association for Science in Autism Treatment

We all know that, at least when it comes to autism, the on line world is a mess. There is no such thing as a community of interests when discussing autism. There are many parents trying to make sense of what is happening with their child and his or her autism disorder. There are professionals trying to help , some with totally pure and noble intentions, others who don't give a flying fig about your autistic child who are  guided by self interest or personal ideology.  There are some obvious sites to be careful about when trying to find on line autism help ... the Scienceblog bloggers whose focus is in proving that vaccines can never, ever, ever cause autism or any form of neurological damage will be of no assistance to you at all and  the "scientists" and  "skeptics" who blog there have only a tangential interest in autism and know very little about autism disorders. 

The Neurodiversity bloggers who think that autism is not really a medical or mental disorder, who will try to convince you that autism is just a natural variation, a wonderful parade of joy and bliss, that autism can only be considered a disorder in the sense that autism is not accepted by society should absolutely not be taken seriously. They could well lull you into a false belief that all will be well if you just think good thoughts about autism which they have elevated into an object of worship.

With all the nonsense that clutters the autism world on line where can a parent seeking to help their autistic child look to ground themselves as they being the life long struggle, and it will be a life long struggle in most cases, to help their autistic child? My recommendation for a starting point in the search for information is not in the autism blogs, including this one, notwithstanding that it is arguably the best informed, best intentioned and best written autism blog in the world (just kidding people).  The site that I recommend as your starting point in your on line autism journey and a valuable resource at all times is the Association for Science in Autism Treatment. The ASAT logo states that if offers real science and real hope and if you are looking for real science and real hope I suggest you start at ASAT.

The ASAT site is dedicated to an evidence based approach to autism treatments. The ASAT organization  is thorough, balanced and well informed. It is guided  by people like David Celeberti and Bridget Taylor, people who are both well educated and very experienced in actually helping autistic children.  In reading the abundant materials on the ASAT site you might think it is essentially an ABA site but if you do then you are simply ... wrong.  ASAT, as the name indicates is committed to real science, evidence based science. For many years ABA has been the only autism intervention that has enjoyed any substantial body of  quality evidence in support of its effectiveness. If you read the ASAT comments and recommendations though you will find acknowledgments that other approaches hold some promise but require more research in to determine their effectiveness.  ASAT does state point blank, but without exaggeration, that some methods are implausible and possibly dangerous and identifies those methods.

Throughout the ASAT site you will find language that is respectful both towards parents and towards most efforts to help autistic children.  There is a lot of helpful information on the ASAT site, it is well researched and well organized.  If you are starting on the path of helping your newly diagnosed autistic child you should really consider starting with the Association for Science in Autism Treatment.

NOTE: This is not a paid infomercial and I do not  have advertising on this blog site. My only connection to ASAT , other than being a parent of a severely autistic son,  and having read ASAT materials for many years, is that, along with some other autism parent advocates,  I had the privilege of meeting  David Celiberti briefly during a visit he made to Fredericton.

Nor do I agree with everything on the site. The ASAT site prevalence information for Autism Spectrum Disorders,  perhaps reflecting the influence of  advisory board member Dr. Eric Fombonne,  still indicates a 1 in 160  rate well after the CDC stated that the current rate for ASD's  is 1 in 110. That said,  the place to start  looking on line for trustworthy, documented information about autism treatments is ASAT.  IMHO.

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Evidence Based Autism Treatment: What the New York Times Didn't Say About Dr. O. Ivar Lovaas

The New York Times has now published an  obituary on the passing of Dr. O. Ivar Lovaas.  It is generally a fair commentary if understated in describing his positive  impact on the lives of autistic children.  The NYT summary of Lovaas therapy doesn't  really seem to get it though, doesn't  really seem to understand  why so many people, parents and authorities, seek  Lovaas ABA therapy for autistic children despite the cost:

Though Lovaas therapy can cost tens of thousands of dollars a year, parents of autistic children clamored for it. In 1995, Dr. Lovaas founded the Lovaas Institute, based in Los Angeles, which trains teachers in his method. Today, thousands of children throughout the United States and abroad are receiving Lovaas therapy.

The NYT fails to demonstrate that it  fully understands why  the Lovaas method  is so widely sought and applied by parents and others interested in actually helping autistic children .... the evidence base in support of its effectiveness. The NYT makes no mention of the  numerous credible health authorities, including the office of the US Surgeon General, that  reviewed hundreds of ABA studies and concluded that it is the only evidence based effective intervention for helping autistic children.  

Dr. Lovaas more than anyone else advanced the evidence based approach to helping autistic children that has made ABA the intervention that so many parents "clamor" for as the NYT puts it somewhat condescendingly.  The evidence in support of the Lovaas ABA method is what persuaded so many parents that it was the treatment on which to wager their children's precious early development time.  The evidence in support of  ABA is what assisted parents in Canada and the US in advocating for the provision of treatment for their autistic children.  

The New York Times can not bring itself to say outright what many parents  and public health authorities  know ... that Dr. Lovaas  was one of the very few who have actually helped autistic children. 

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More Weak Autism Intervention Journalism from the New York Times

The New York Times is not exactly a "go to" resource for well informed, objective discussion of autism interventions.


In October 2008 it presented a slanted article on DIR/Floortime. In that article the guest author praised DIR/Floortime as a new modern improved form of autism intervention without mentioning the lack of scientific evidence in support of of the DIR/Floortime approach. The article also made  unsubstantiated derogatory comments about ABA as "rote learning".

With its coverage of the recent ESDM study the NYT has done it again.  In an article today Raising I.Q. in Toddlers With Autism Tara Parker-Pope praises the results of the Denver ESDM study of a group of 48 autistic toddlers  "showing substantial gains in I.Q. and in listening skills after two years of therapy".  This time the NYT makes no derogatory reference to ABA.  Instead while praising the ESDM approach the NYT fails to mention that the  approach employs principles of Applied Behavior Analysis as set out in the AAP journal Pediatrics article:

"Forty-eight children diagnosed with ASD between 18 and 30 months of age were randomly assigned to 1 of 2 groups: (1) ESDM intervention,which is based on developmental and applied behavioral analytic principles and delivered by trained therapists and parents for 2 years"

For reasons that are not clear the NYT simply has a hard time when it comes to being objective about ABA as an autism intervention.  Given the large readership and influence of the NYT that is most unfortunate.

autism

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Autism and ABA: Morris's (Unanswered) Challenge to Gernsbacher Will Be Featured at CalABA Annual Conference 2010

Edward K. Morris is scheduled to give what should be a fascinating keynote speech at the 28th Annual Regional Conference of the California Association for Behavior Analysis. Professor Morris's topic will be The Gernsbacher Lectures: Cut Aways, Outtakes, and Bloopers - and Essentialism. The CalABA conference is scheduled for February 18 to 20, 2010 at the Hyatt Regency in Irvine California.

Professor Morris published a scathing article in the Behavior Analyst, A Case Study in the Misrepresentation of Applied Behavior Analysis in Autism: The Gernsbacher Lectures, in which he thoroughly, systematically and candidly dissected and demolished her criticisms of ABA. To my knowledge Professor Gernsbacher has not provided a public reply to Professor Morris's challenge.

Professor Morris's speech at the CalABA conference should be interesting. Hopefully Professor Gernsbacher will attend and reply, or at least offer a public rebuttal in some forum, to explain her anti-ABA crusades in light of what appears to be a devastating challenge to her opinions from Professor Morris.

Gernsbacher has influenced people, helping to turn some parents and professionals away from ABA as an intervention for autism, one recognized by state agencies, the Association for Science in Autism Treatment, the US Surgeon General and the AAP as the most empirically validated autism intervention to date. Having done so, she should back up her views in public debate with an informed and capable opponent of her views. .... if she can.

autism

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

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

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

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

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

autism

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ABA and Autism's Biggest Myth - Conor Counts the Days to Middle School

Conor has been counting down the days to school much of which is based on ABA (Applied Behavior Analysis) instruction in a room alone with an ABA trained (UNB-CEL Autism Intervention Training) Education Assistant. Conor loves school, including his ABA, as I have written about several times.

Today at about 6:30 am Conor came and got Dad to tell me "2 more days to Middle School". He has been asking about (Nashwaaksis) Middle School for the past few weeks. Some mornings he gets up and grabs his school lunch bag off the top of the fridge (top picture, above) telling us clearly that he wants to get back to school. He has also been joking about school, making comments about Conor going to Nashwaaksis Memorial where he attended grade school. When we agree he laughs and says "Noooooooo Memorial ... MIDDDDDLE School!".

The bottom picture, above, is a re-post of a perfect attendance record from his first year at Nashwaaksis Middle School, 2 years ago. Last year Conor missed a couple of days because of flu and because of a dental operation so he didn't get the perfect attendance certificate but he still came pretty close.

Those who allege that ABA turns children robotic, or is otherwise abusive, are creating a myth, Autism's Biggest Myth. They have no evidence, no studies, on which to base this myth. It is just the opinion of people with very little real exposure to ABA. Conor has loved the ABA instruction he has received. Because of the determined Autism Advocacy of some dedicated parents here in New Brunswick and a government that listened, both to parents and to the decades of research supporting the efficacy of ABA as an autism intervention, Conor has been able to receive ABA based instruction in school for the past several years ... and he loves every minute of it.

To Michelle Dawson and other spreaders of Autism's Biggest Myth ... you are wrong .... and you have nothing to back up your prejudiced opinions about ABA. Your opinion about ABA effectiveness is rebutted by hundreds of studies and dozens of credible professional reviews. Your myth about ABA abuse of autistic children is rebutted by .... Conor's very expert, very well informed, opinion.

NOTE: Even as I am writing this comment Conor came in to the kitchen from the back step where he is playing with water balloons to say "Middle School Breakfast" to his mother. He wasn't telling her he wanted breakfast ... he was telling her what was on his mind ... getting back to school.

autism

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Autism and Applied Behavior Analysis Workshop in Arizona - Real Help for Autistic Children

With all the nonsense about autism in the mainstream media, Hollywood movies and Neurodiversity blog sites it is refreshing to see a simple notice like the one from Arizona about an organization actually trying to help autistic children. The notice, on yourwestvalley.com, refers to a workshop called Autism and Applied Behavior Analysis presented by the Arizona Autism United, Inc., a 501(c)3 nonprofit organization providing services to children with autism spectrum disorders in Arizona.

The notice states quite simply that Applied Behavior Analysis is a method used to intervene on problem behaviors and teach new skills. Contrary to all the tortured arguments put forth by anti-ABA activists like Michelle Dawson that simple statement reflects the focused approach of people, and ABA, that actually help autistic children.

The yourwestvalley.com article Workshop focus is 'Autism and Applied Behavior Analysis' has all the contact information for parents in the area who might be interested in registering for this free workshop scheduled for Aug. 22 .

This type of hard work and focus on actually helping autistic children is not likely to make the NYT, CNN or CBC but it is the type of effort that goes on every day by parents and organizations concerned about the realities facing autistic children in a challenging world. People who do what they can to help. Real autism advocates.

Nothing is done without them.

autism

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Autism, ABA and Conor's Autism Medications (None)

The Internet criticism of ABA as an autism intervention comes largely from a rejection of evidence based medicine, ideological based rigidity and lack of any real experience with ABA. To the anti-behaviorists no ABA supportive studies are acceptable unless they are double blind controlled studies conducted over the life time of autistic persons. Obviously it would be unethical to provide a placebo intervention to an autistic child as an intervention over a lengthy period of time.

The various studies described by the American Academy of Pediatrics, the US Surgeon General, state agencies in New York, California and Maine, the Association for Science in Autism Treatment, the Center for Autism and Related Disorders, the May Institute and the thousands of health care and education professionals who actually work with and help autistic children will be ignored by the anti-ABA ideologues. There is no need to mention of course that the direct observations of autistic children by their own parents who live with their children, care for them, help them and observe them 24/7 are of no weight whatsoever to the ideologues for whom NO information supportive of ABA could ever be acceptable.

Some of the anti-ABA rhetoric originates with adult persons with various autism spectrum disorders who themselves have had no actual involvement with ABA. The further removed from the realities of ABA and the need for an effective intervention that helps autistic children the greater the chance that the irrational anti-ABA ideology will take root. The criticisms themselves are largely non-evidence based and ignore the many positive contributions that ABA has made to the lives of autistic children including my severely autistic son Conor.

Conor has learned various skills, reduced self injurious behavior, increased communication skills, attended a neighborhood school and functioned well. On the sidebar of this blog are pictures of Conor holding his perfect attendance certificate from grade 6 during which time he received ABA instruction at school. This year colds and a flu prevented him from perfect attendance but his desire to attend school did not diminish. He loves school ABA and all. Why would Conor jump up each day eager to attend school where he receives ABA intervention if it was so abusive?

I post many picture sets of Conor on this blog site over the past 3 years. These portray him as what he is -- a very happy, personable and lovable boy. ABA has not turned him "robotic" or robbed him of his personality. There is nothing at all abusive about ABA for autistic children, certainly not for Conor, despite the absurd rhetoric of the anti-behaviorists.

Conor is now 13 1/2 years old and stands 5' 11''. In the past year and a half he has undergone the adolescent "change of life" with rapid growth spurts and all the other changes that can be so disruptive of young personalities in the teen years. While there are some challenging behaviors at times there is nothing out of the ordinary. Despite his growing size, strength and disruptive adolescent changes he is still a very well behaved, gentle young man. We have not felt the need to provide Conor with ANY medications at any time to manage his behavior.

Although he used to bite himself with some frequency, and still does on occasion, such self harmful behavior is rare. He does not return home at the end of a day at school and engage in self injury as a way of coping psychologically as one prominent anti-ABA activist testified that she would do at the end of the work day. The ideologues can blame ABA intervention for Conor's near elimination of self injurious behavior or they can pretend that my direct observations about the impact of ABA in reducing such behavior are of no weight. No need to guess which way the anti-behaviorists would lean on that choice.

Conor has received NONE of the medications prescribed for many autistic children. The anti-ABA ideologues can also blame ABA for that result but they won't. They don't really want to look at the issue objectively. They do not want to look at the whole picture including the benefits ABA has brought to my son or other autistic children.

If you are the parent of a newly diagnosed autistic child consult your attending health care professionals about the best way to help your child. Make any treatment or intervention decisions with their input but do not be turned off of ABA as a possible intervention to help your child by the anti-ABA rhetoric that permeates some Internet autism hubs. Most of such rhetoric emanates from people with no direct involvement in helping autistic children. Most of such rhetoric emanates from people with no actual experience with ABA. Most of such rhetoric emanates from people, whether they fancy themselves researchers or not, who just don't know what they are talking about when they are talking about ABA. Do not be misled by the misbehavior of the anti-behaviorists.

In the meantime I am looking forward to another day with my wonderful son who has benefited greatly from his ABA intervention. Conor will probably also enjoy the day ... without the need to injure himself so that he can "cope psychologically" ... and without medication.

God damn that ABA!

autism

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Further Notes On Alan Griswold's Bizarre Autism Rant

I have to admit I was very startled reading Alan Griswold's bizarre rant about the Deborah Fein study being a "fictitious study" and the intervention involved not being ABA (yeah right 40 hours a week of intensive early behavioral intervention and it wasn't really ABA?) .

I also found it odd that AG would single me out for fame and misfortune in his blog post. (rant). His fellow Neurodiversity blogger Kristina Chew at the Change.org's Neurodiversity page, and with whom I usually disagree, concurred with my interpretation of the word "study" (it means "study" Alan) and IEBI as being ABA:

An ongoing study involving children on the autism spectrum aged nine to 18 is finding that "the range for children recovering from autism is 10 percent to 20 percent." As reported in yesterday's Telegraph, University of Connecticut psychology professor Deborah Fein is studying the effects of intensive behavior therapy---Applied Behavior Analysis (ABA)---on children on the spectrum. The study is still in its preliminary stages and is funded by the NIMH:

Of course Ms Chew supports the Neurodiversity ideology Mr Griswold subscribes to so she wasn't on the receiving end of the AG rant. Where I have never drunk from the ND Kool-Aid I was singled out for Mr. G's weird little outburst.

I wonder if Alan Griswold is capable of admitting his errors?

autism

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