Autism Society Canada Misrepresents Autism On Its Web Site Makeover By Hiding The Many with Autism AND Intellectual Disability

The Autism Society Canada web site was down briefly and I had hoped, notwithstanding past experience, that once it was back up the ASC would have started presenting an accurate picture of autism disorders to the Canadian public and families with autism disorders. My hopes, faint as they might have been, were dashed again.  ASC, on its "new" web site face, once again misrepresents autism disorders by hiding some harsher facts, in particular the fact that  as much as  50% (World Health Organization) of persons with autism disorders also have an intellectual disability:

"Q: Do persons with autism always suffer from intellectual disability?

A: The level of intellectual functioning is extremely variable in persons with ASD, ranging from profound impairment to superior non-verbal cognitive skills. It is estimated that around 50% of persons with ASD also suffer from an intellectual disability."

(World Health Organization, September 2013) 

Canadian families of children with autism disorders should be aware of the very high % of persons with autism disorders who also suffer from an intellectual disability.  Those families should also be aware that many with autism and intellectual disability have very high rates of seizures and increased mortality.

Statements below from a more reliable source that takes autism disorders more seriously than the Autism Society Canada appears to:  the American Academy of Pediatrics in a statement concerning Management of Children with Autism Spectrum Disorders published in 2007 and reaffirmed in 2010 and 2014. 

American Academy of Pediatrics 

Management of Children with Autism Spectrum Disorders,  (2007)

Statement of reaffirmation  126 (6): e1622. (2010)

Statement of reaffirmation 134 (5): e1520. (2014)

Comorbid severe global developmental delay/mental retardation and motor deficits 

are associated with a high prevalence of seizures (42%)

Health care utilization and costs are substantially higher for children and adolescents with ASDs compared with children without ASDs, and available data suggest that mortality is increased as well. The increased mortality in ASDs is thought to be largely, but not completely, accounted for by the increased mortality associated with mental retardation and epilepsy.

Canada's Autism Epidemic? To Start With We Have to Use American Numbers 1in 88 Children, 1 in 54 Boys

Canada Flag Photo by Harold L Doherty

The CDC in the US has released new numbers on the autism epidemic in the US.  It now estimates that 1in 88 children (1 in 54 boys) have an autism disorder.  There are no known, reliable estimates available for Canada which has not updated its autism estimates in several years.  The Harper government has not taken Canada's national autism crisis seriously preferring to hide behind constitutional walls and leave the availability of treatment to an autistic child to depend on which province his/her parents live in.  

A National Autism Symposium was cancelled once the Harper government became aware that serous autism advocates were planning to participate.  The symposium was rescheduled and the resulting symposium was a sham. Speakers and so called  "community representatives" were chosen who would not take an aggressive advocacy position on any autism issues.  

The speakers list even included persistent anti-ABA activist Dr. Laurent Mottron who believes that the idea of curing autism is nonsense.  Mottron's mentor and fellow anti-ABA, anti-autism cure activist Michelle Dawson was also in attendance. Causes of autism stressed the genetic bases of autism with no attention to possible environmental causes or triggers.  The prevalance rate of 1 in 165 advanced by Dr. Eric Fombonne at that 2006 symposium is still the only figure recognized by the Harper government and by the Autism Society Canada. 

With the release of the United States CDC estimate of 1 in 88 Autism Speaks has called for a serious response to the autism epidemic:

Autism Speaks called for the development of a national autism action plan that should include, among other elements:

• Increased funding for basic science uncovering the genetic underpinnings of autism;
• Increased funding for environmental research detecting the causes of autism;
• Accelerated funding and development of effective medicines and treatments;
• Commitment to a strategy where all children with autism from every background are diagnosed no later than18 months of age;
• Commitment to a National Training Corps to recruit more therapists and service providers, as well as specially trained teachers and teacher assistants;
• A strategy to address the growing needs of adults with autism, specifically around continuing education, employment, housing/residential living and community integration.

The Autism Speaks recommendations are solid and, hopefully, will be adopted in the United States.  In Canada we can not realistically expect a serious response along those lines from our current Federal government.  That has been clearly demonstrated over the past several years of Harper Conservative rule.

In terms of the prevalence rate though it is absurd to rely  on the outdated figure of 1 in 165.   In the absence of any credible, current estimates from Canadian government institutions or from federal autism advocacy groups, the US figure of 1in 88 should be taken as the best available estimate of Canada's autism rates. 

We must also continue the push for national Medicare coverage of effective ABA autism treatment, for continued, real autism research of causes and cures, and for the beginnings of a plan for adult autism employment opportunities and adult residential care and treatment facilities.  

The US has stepped up to the plate, again, in offering meaningful, honest information about the autism epidemic.  Canada has long suffered from a lack of will that has allowed our autism epidemic to become a national autism crisis.   We must begin now working toward the day when a new national government is elected that will take our autism crisis seriously. 

In the meantime we should abandon the ridiculously outdated autism estimate of 1 in 165 and use the American estimates: 1 in 88 children, 1 in 54 boys. 

Autism Is Not A Severe, Even Deadly, Disorder? Susan's Story Says Otherwise

The following letter (addressee's name edited by me to protect that person's privacy) was sent to a long time New Brunswick autism advocate by Autism Society Canada Executive Director Kathleen Provost.  It tells the story of Susan, the devoted mother of an autistic child who struggled for years to obtain services and a positive life for her child with autism, and who ultimately took her own life.  The letter tells of the enormous challenges faced by Susan and the toll those challenges took on her.  Kathleen Provost of the ASC disagrees with those who say that autism is not a deadly disorder.  Susan's story is evidence of the strong challenges faced by those with severe autism challenges and the family members who care for them.   

... a national voice since 1976

Dear ***

I am sitting down, pen in hand, ready to talk to you about Autism Society Canada (ASC).

I have all my notes beside me, including: the number of committees that ASC has, as well as their challenges and their successes; news on the advances that we have made at the Federal level; a list of hurdles that are still ahead.

But I hesitate.

Because what I really want to talk to you about are people. I especially  want to talk to you about family members and caregivers; those very people who are challenged on a daily basis to support and care for a loved one living with an Autism Spectrum Disorder (ASD).

Her Story...

About six weeks ago we received a memorial donation from someone who I suspected wanted to send a gift to a charity in lieu of flowers.  We are always appreciative of those who think of us at a time that must be quite difficult.  Then the next day we received a few more donations in memory of the same person.

Her name was Susan.

A couple of days passed, and yet a few more memorial donation came in for Susan. (This is not totally uncommon.  Our organization may receive quite a few gifts in memoriam during the span of a year). However, I thought to myself that Susan must have been a pretty special person to have so many friends and family members who cared about her... and I felt as if Susan herself was sending us all her flowers.  As is often the case with memorial gifts to a national organization: I do not know the deceased personally, nor am I aware of their connection to Autism Society Canada.

This case is different.

A couple of weeks ago I received a letter from Jan, Susan’s mother.  She wrote to me to tell me about Susan. You see, Susan was a mother of a child living with an ASD.  She told me about how Susan fought for five years with her local school board to get her child in an appropriate class.  She told me how Susan’s child did not have friends at school or in the neighbourhood. She told me how Susan felt that she had failed as a mother and as an advocate for other children with autism.

She told me that Susan had taken her own life.

Losing Susan should not have happened.

I have choosen to recount this tragedy, which is an extreme case, to illustrate a point: there is a misnomer out there that autism is not deadly.

I beg to differ. 

I ask you to help us help parents, like Susan, like Jan.

Susan’s mom would like the gifts received in her daughter’s name to sponsor available programs.

Please make a donation today, your support will make a difference.  Click here to access our secure online donation link: http://www.canadahelps.org/CharityProfilePage.aspx?CharityID=s42156 .

Thank you in advance for your compassion and your kindness.  If you would like more information on Autism Society Canada, please visit our web site at www.autismsocietycanada.ca.

Wishing you peace this holiday season.

    Truly yours,

Kathleen Provost

Executive Director

PO Box/C.P. 22017, 1670 chemin Heron Road, Ottawa, ON K1V 0C2      Phone/Tél: (613) 789-8943

E-Mail:  info@autismsocietycanada.ca    Website: www.autismsocietycanada.ca

Charitable registration number:  13160 7657 RR 0001

Autism Society Canada Applauds Bill C-360 And Calls For A National Autism Strategy

Autism Society Canada hopes the introduction of Federal Autism legislation will pave the way for a National Autism Strategy in Canada

Ottawa - April 15th, 2009 – for immediate release - Autism Society Canada (ASC) applauds the introduction into the House of Commons of Bill C-360, An Act to amend the Canada Health Act (Autism Spectrum Disorder). In introducing the Bill, Sudbury M.P. Glenn Thibeault said: “Yesterday was World Autism Awareness Day. I still wear my awareness pin proudly. We as parliamentarians need to work together to provide individuals with ASD and their families with the right supports.”

Support for improving and augmenting services for persons with Autism is widespread. In separate letters acknowledging World Autism Awareness Day on April 2nd 2009, the Leaders of Canada’s federal Parties recognized the growing need to assist those affected by Autism Spectrum Disorder (ASD).

The summary of the Act states that: “The purpose of this enactment is to ensure that the cost of Applied Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI) for autistic persons is covered by the health care insurance plan of every province.”

ASC encourages all within the Autism community to ask their Member of Parliament to support Bill C-360 which gives universal access to this scientifically validated and effective treatment. ASC also urges that work continue in order to provide other needed treatments and services in the best interests of all individuals with autism.

Christine Dade, President of Autism Society Canada, remarked: “Providing Applied Behaviourial Analysis and Intensive Behaviourial Intervention in a timely and effective way for all those who need it is definitely a step in the right direction. It isn’t everything that is needed, however, and ASC strongly urges Canadians and their leaders to work towards a National Autism Strategy as well.” A National Autism Strategy, as called for in former Fredericton M.P. Andy Scott’s Private Members Motion M-172 (passed in the House of Commons over two years ago), includes:

• the development, in cooperation with provincial-territorial governments, of evidence based standards for the diagnosis and treatment of autism spectrum disorder;


• the development, in cooperation with provincial governments, of innovative funding methods for the care of those with autism spectrum disorder;


• consulting with provincial-territorial governments and other stakeholders on the requirements of implementing a national surveillance program for autism spectrum disorder;


• the provision of additional federal funding for health research into autism spectrum disorder.

Autism Society Canada looks forward to working with all stakeholders and the Government of Canada to develop a National Autism Strategy. Much more needs to be done to address the glaring gaps in services and supports across the lifespan of the individual with autism. The inherent Rights of all Canadians living with an ASD should be enhanced, protected and enforced by appropriate legislation in each province and territory.

Autism Society Canada / La Société canadienne de l’autisme Box/C.P. 22017, 1670 chemin Heron Rd, Ottawa, ON K1V 0C2 Phone/Tél: (613) 789-8943

E-Mail: info@autismsocietycanada.ca

Website: http://www.autismsocietycanada.ca

FB: http://www.facebook.com/home.php#/group.php?gid=49558557641

Charitable registration number: 13160 7657 RR 0001

autism

Canada Still Awaits A National Autism Strategy

The following comment by Brian Rimpilainen, a friend and autism dad from Fredericton New Brunswick, was published in autism group networks and in the Telegraph-Journal. Brian is a dedicated autism advocate who has worked as a member of the Autism Society New Brunswick Board of Directors, the ASNB representative on the Autism Society Canada board and the Medicare for Autism organization. He has also been actively involved in direct citizen advocacy through local print media and internet media tools such as Facebook where Brian is the founder and administrator of the National Autism Strategy / ABA in Medicare NOW! group:

As 2008 comes to a close, I am reminded of former Fredericton MP Andy Scott's statement of June 5, 2007: "Mr. Speaker, it is regrettable that we have seen little action by the government toward implementing a national autism strategy ;

A year earlier Mr. Scott's private member's motion called for "evidence-based standards, innovative funding arrangements for diagnosis, treatment and research, and a national surveillance program."

I am the father of a son with Autism Spectrum Disorder (ASD). I watched hopefully as Liberal MP Shawn Murphy introduced a private member's bill, which would called for amendment of the Canada Health Act to provide coverage for autism treatments. The bill was defeated. The Liberals and the New Democrats both voted, by and large, in support of Bill C-304.

Autism is a serious neurological disorder that affects 1 in 150 Canadians. Persons with an ASD can display a wide range of intellectual, communication, behavioural and/or social deficits. While no known cure exists, a treatment that has been demonstrated in hundreds of studies to decrease the negative autism deficits, and in some cases virtually eliminate these deficits exists. Applied Behaviour Analysis (ABA) has been demonstrated to improve the abilities in all these areas and improve the quality of life of persons with autism.


Despite this, governments in Canada have an atrocious record in dealing with the autism crisis and in helping these vulnerable people.


I hope all MPs will carry the torch Mr. Scott has lit as we move into 2009.


autism

Autism Society Canada Rejects Evidence Based Approach To Autism Treatment And Fails Autistic Children

Recent statements by current Autism Society Canada President Kathleen Provost to a Montreal Gazette reporter have me asking again what the ASC actually does to help autistic Canadians? When the ASC can not even tell the Canadian public in a forthright manner what numerous American state and professional agencies have told us for years about the evidence basis supporting the effectiveness of Applied Behavior Analysis in treating autism it becomes difficult to understand the ASC's raison d'être.

For parents of autistic children there are few things more important than trying to help their autistic children overcome, to the fullest extent possible, the deficits and challenges that accompany their autistic disorders - self injurious behavior, dangerous behavior such as wandering into traffic or getting lost, lack of communication and language abilities and intellectual deficits. These are all serious challenges facing many autistic Canadians. But they do not receive accurate information about the state of autism treatment from the ASC.

Autism Society Canada Statements on Autism Treatment

The Autism Society Canada has made incomplete, inaccurate and even misleading statements about the effectiveness of autism treatments. It does so by rejecting an evidence based approach to treating autism. It states that there are many approaches to treating autism without informing the public forthrightly that only Applied Behavior Analysis is supported by a large body of evidence supporting its effectiveness.

In More than one approach to autism the Autism Society Canada has failed, once again, to help Canadians evaluate the evidence supporting ABA as an autism intervention and, as the article title illustrates, helps mislead Canadians into thinking that all autism interventions are created equal. That no single autism intervention is better than any other. Nothing could be further from the truth. In that article Kathleen Provost, ASC President, is reported and quoted as follows:

Kathleen Provost of Autism Society Canada noted a lack of consensus among experts about the best ways of dealing with the condition.

"What we have the most researcher and information on is behaviour therapy," Provost said.

The society does not endorse any method.

"Some of it is new and we don't have enough information," Provost said. "We leave it up to the parents to make decisions."

There is no unanimity amongst "experts" about the best ways of dealing with autism, or any other issue, in any other field, for that matter. Most noticeable in opposing ABA as an autism intervention is the Montreal neuroscience community which dominates the Canadian Institutes for Health Research. (Anti-ABA advocate, Dr Laurent Mottron, of the Psychiatry Department of the Hopital Riviere-Des-Prairies was a key note speaker at the CIHR's November 2007 Autism Symposium which itself had to be rescheduled to ensure that known ABA advocates would be excluded from representing any of the provincial autism "communities"). There is, however, a clear consensus amongst experts about the best ways of dealing with autism and that consensus clearly points to ABA as the most effective evidence based intervention for dealing with autism.

Evidence Based-Medicine

To properly understand that consensus it is important to understand a point not often mentioned by the Autism Society Canada, or the CIHR for that matter, the concept of evidence based-medicine:

"Evidence-based medicine is the conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patients. The practice of evidence-based medicine means integrating individual clinical expertise with the best available external clinical evidence from systematic research. By individual clinical expertise we mean the proficiency and judgement that individual clinicians acquire through clinical experience and clinical practice. Increased expertise is reflected in many ways, but especially in more effective and efficient diagnosis and in the more thoughtful identification and compassionate use of individual patients' predicaments, rights, and preferences in making clinical decisi ons about their care. By best available external clinical evidence we mean clinically relevant research, often from the basic sciences of medicine, but especially from patient centred clinical research into the accuracy and precision of diagnostic tests (including the clinical examination), the power of prognostic markers, and the efficacy and safety of therapeutic, rehabilitative, and preventive regimens. External clinical evidence both invalidates previously accepted diagnostic tests and treatments and replaces them with new ones that are more powerful, more accurate, more efficacious, and safer.

Good doctors use both individual clinical expertise and the best available external evidence, and neither alone is enough. Without clinical expertise, practice risks becoming tyrannised by evidence, for even excellent external evidence may be inapplicabl e to or inappropriate for an individual patient. Without current best evidence, practice risks becoming rapidly out of date, to the detriment of patients."

Center for Evidence-Based Medicine (CEBM) and the British Medical Journal, 13th January 1996 (BMJ 1996; 312: 71-2)

The CEBM also refers readers to the Wikipedia entry on Evidence Based-Medicine:

Evidence-based medicine (EBM) aims to apply evidence gained from the scientific method to certain parts of medical practice. It seeks to assess the quality of evidence[1] relevant to the risks and benefits of treatments (including lack of treatment). According to the Centre for Evidence-Based Medicine, "Evidence-based medicine is the conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patients."[2]

EBM recognizes that many aspects of medical care depend on individual factors such as quality and value-of-life judgments, which are only partially subject to scientific methods. EBM, however, seeks to clarify those parts of medical practice that are in principle subject to scientific methods and to apply these methods to ensure the best prediction of outcomes in medical treatment, even as debate about which outcomes are desirable continues.

Practicing evidence-based medicine requires clinical expertise, but also expertise in retrieving, interpreting, and applying the results of scientific studies and in communicating the risks and benefits of different courses of action to patients.

....

Qualification of evidence

Evidence-based medicine categorizes different types of clinical evidence and ranks them according to the strength of their freedom from the various biases that beset medical research. For example, the strongest evidence for therapeutic interventions is provided by systematic review of randomized, double-blind, placebo-controlled trials involving a homogeneous patient population and medical condition. In contrast, patient testimonials, case reports, and even expert opinion have little value as proof because of the placebo effect, the biases inherent in observation and reporting of cases, difficulties in ascertaining who is an expert, and more.

Systems to stratify evidence by quality have been developed, such as this one by the U.S. Preventive Services Task Force for ranking evidence about the effectiveness of treatments or screening:

* Level I: Evidence obtained from at least one properly designed randomized controlled trial.
* Level II-1: Evidence obtained from well-designed controlled trials without randomization.
* Level II-2: Evidence obtained from well-designed cohort or case-control analytic studies, preferably from more than one center or research group.
* Level II-3: Evidence obtained from multiple time series with or without the intervention. Dramatic results in uncontrolled trials might also be regarded as this type of evidence.
* Level III: Opinions of respected authorities, based on clinical experience, descriptive studies, or reports of expert committees.

The UK National Health Service uses a similar system with categories labeled A, B, C, and D. The above Levels are only appropriate for treatment or interventions; different types of research are required for assessing diagnostic accuracy or natural history and prognosis, and hence different "levels" are required. For example, the Oxford Centre for Evidence-based Medicine suggests levels of evidence (LOE) according to the study designs and critical appraisal of prevention, diagnosis, prognosis, therapy, and harm studies:[9]

* Level A: Consistent Randomised Controlled Clinical Trial, cohort study, all or none (see note below),clinical decision rule validated in different populations.
* Level B: Consistent Retrospective Cohort, Exploratory Cohort, Ecological Study, Outcomes Research, case-control study; or extrapolations from level A studies.
* Level C: Case-series study or extrapolations from level B studies.
* Level D: Expert opinion without explicit critical appraisal, or based on physiology, bench research or first principles.

Evidence Based-Medicine and Autism Interventions

Autism has been plagued by a host of "alternative" treatments and interventions including some as whacky as "swimming with dolphins"; the notion that somehow swimming in close proximity to these intelligent but still wild and powerful sea creatures somehow has therapeutic value for autistic children. Facilitated communication in which a therapist aids non-verbal autistic children in communicating through a variety of assisted communication technologies has caused actual harm as seen very recently in Oakland County Michigan where a family was torn apart when the parents of autistic children were wrongully charged with abuse based on a therapists Facilitated Communication interpretations of the autistic daughter's responses. The interpretations were exposed as nonsense at trial when the same process elicited answers such as these to questions posed to the daughter:

Q: What color is your sweater?

A: JIBHJIH

Q: What are you holding in your hand right now?

A: I AM 14


In Children with autism deserve evidence-based intervention, The evidence for behavioural therapy, MJA 2003; 178 (9): 424-425, Jennifer J Couper and Amanda J Sampson, reviewed some of the evidence in support of the efficacy of behavioral interventions for autism. The authors stressed the importance of an evidence based approach to autism interventions:

While ineffective therapies may be harmless, they waste parents' money and the child's valuable therapy time. Furthermore, the delay in implementing effective treatment may compromise the child's outcome.

Couper and Sampson reviewed the evidence at that time (2003) in relation to behavioral treatment for autism:

the early intervention that has been subjected to the most rigorous assessment is behavioural intervention. There is now definite evidence that behavioural intervention improves cognitive, communication, adaptive and social skills in young children with autism. In 1987, Lovaas showed apparent recovery, persisting into adolescence, in nine of 19 young children who received an intensive home-based intervention based on applied behavioural analysis, a scientific method of reinforcing adaptive and reducing maladaptive behaviours.5,6 Subsequent studies also showed that behavioural intervention caused significant, albeit somewhat lesser, gains.7-11 This has modified the orthodox view that autism is always a severe, lifelong disability. Criticisms of the adequacy of the design and power of these studies are being addressed by the multisite Lovaas replication Early Autism Project. The first US site has released data (Wisconsin Early Autism Project).12 Again, after three to four years of intensive applied behavioural analysis intervention, about half the preschool children with autism acquired near-normal functioning in language, performance IQ and adaptability. Ninety-two per cent of intervention children acquired some language. Control children who received special education showed no gains in IQ or adaptability.12

Why is intensive applied behavioural analysis intervention more effective than special education for children with autism? This can not be simply explained by the intensity of these programs (30–40 hours per week). Children in a school-based Scandinavian study who received behavioural intervention gained an average of 25 language IQ points in the first year of the intervention, with improvements in performance IQ, communication and adaptability. On all scores, they surpassed control children who received special education according to best practice for autism, and the same intensity, duration and supervision of therapy.13

Autism Treatment Consensus - God Bless America

Contrary to Kathleen Provost's, and the ASC's, statements, there IS a consensus on the best way to "deal with" autism. That consensus has been clearly articulated in a number of reviews of autism treatment effectiveness by responsible, respected American authorities. Thankfully the internet ensures that Canadian parents are not dependent on a sham Autism Symposium, the self interested dictates of some members of the Montreal neuroscience community, or the misleading statements of timid ASC representatives. We can read for ourselves what more credible authorities have concluded.

The American Academy of Pediatrics - Management of Children with Autism Spectrum Disorders 2007

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.31–40

No other intervention reviewed by the AAP approached ABA in the quantity or the quality of evidence in support of its effectiveness as an ABA intervention.

New York State Department of Health - Clinical Practice Guidelines - Report of the Recommendations Autism/Pervasive Developmental Disorders 2005 (rev ed)

Intervention Methods

Intensive Behavioral and Educational Intervention Programs

Summary Conclusions

Intensive behavioral and educational intervention programs involve systematic use of behavioral teaching techniques and intervention procedures, intensive direct instruction by the therapist, and extensive parent training and support.

* Articles screened for this topic: The literature search found 232 articles that reported using behavioral and educational approaches in children with autism as well as 68 articles from a comprehensive review article on single-subject design studies.

* Articles meeting criteria for evidence: 5

Several studies done by independent groups of researchers have evaluated the use of intensive behavioral intervention programs for young children with autism. The four studies that met criteria for evidence about efficacy all compared groups of young children with autism who received either an intensive behavioral intervention, a comparison intervention, or no intervention. In all four of the studies reviewed, groups that received the intensive behavioral intervention showed significant functional improvements compared to the control groups.

While none of the four studies used random assignment of subjects to groups, there did not appear to be any evidence of important bias in group assignment. Within each study, the groups receiving different interventions had equivalent subject characteristics. Furthermore, all studies showed similar and consistent results.

Since intensive behavioral programs appear to be effective in young children with autism, it is recommended that principles of applied behavior analysis and behavioral intervention strategies be included as an important element of any intervention program.

It is recommended that intensive behavioral programs include a minimum of 20 hours per week of direct instruction by the therapist. The precise number of hours of behavioral intervention may vary depending on a variety of child and family characteristics. Considerations include age, severity of autistic symptoms, rate of progress, other health considerations, tolerance of the child for the intervention, and family participation. It is recommended that the number of hours be periodically reviewed and revised when necessary. Monitoring of progress may lead to a conclusion that hours need to be increased or decreased.

It is recommended that all professionals and paraprofessionals providing therapy to the child as part of an intensive behavioral program receive regular supervision from a qualified professional.

It is important that parents be included as integral members of the intervention team. It is recommended that parents be trained in behavioral techniques and be encouraged to provide additional hours of instruction to the child. It is also recommended that training of parents in behavioral methods for interacting with their child be extensive and ongoing, and that it include regular consultation with the primary therapist.

Although some of the intensive behavioral intervention programs that were effective included use of physical aversives (such as a slap on the thigh), other programs reported good outcomes without the use of any physical aversives. The panel does not recommend the use of physical aversives, especially given the small physical size and vulnerability of young children in the age group from birth to age three years.

None of the other interventions reviewed by the NYSDOH approached ABA as an evidence based effective intervention for autism.

Report of the MADSEC (Maine Administrators of Services for Children with Disabilities) Task Force Report 2000 (rev ed)



Over the past 30 years, several thousand published research studies have documented the effectiveness of ABA across a wide range of:


• populations (children and adults with mental illness, developmental disabilities and learning disorders)
• interventionists (parents, teachers and staff)
• settings (schools, homes, institutions, group homes, hospitals and business offices), and
• behaviors (language; social, academic, leisure and functional life skills; aggression, selfinjury,
oppositional and stereotyped behaviors)

…

The effectiveness of ABA-based interventions with persons with autism is well documented, with current research replicating already-proven methods and further developing the field.

Documentation of the efficacy of ABA-based interventions with persons with autism emerged in the 1960s, with comprehensive evaluations beginning in the early 1970s. Hingtgen & Bryson (1972) reviewed over 400 research articles pertinent to the field of autism that were published between 1964 and 1970. They concluded that behaviorally-based interventions demonstrated the most consistent results. In a follow-up study, DeMeyer, Hingtgen & Jackson (1981) reviewed over 1,100 additional studies that appeared in the 1970s. They examined studies that included behaviorally-based interventions as well as interventions based upon a wide range of theoretical foundations. Following a comprehensive review of these studies, DeMeyer, Hingtgen & Jackson (1982) concluded “. . .the overwhelming evidence strongly suggest that the treatment of choice for maximal expansion of the autistic child’s behavioral repertoire is a systematic behavioral education program, involving as many child contact hours as possible, and using therapists (including parents) who have been trained in the behavioral techniques” (p.435).

Support of the consistent effectiveness and broad-based application of ABA methods with persons with autism is found in hundreds of additional published reports.


Baglio, Benavidiz, Compton, et al (1996) reviewed 251 studies from 1980 to 1995 that reported on the efficacy of behaviorally-based interventions with persons with autism. Baglio, et al (1996) concluded that since 1980, research on behavioral treatment of autistic children has become increasingly sophisticated and encompassing, and that interventions based upon ABA have consistentlyresulted in positive behavioral outcomes. In their review, categories of target behaviors included aberrant behaviors (ie self injury, aggression), language (ie receptive and expressive skills, augmentative communication), daily living skills (self-care, domestic skills), community living skills (vocational, public transportation and shopping skills), academics (reading, math, spelling, written language), and social skills (reciprocal social interactions, age-appropriate social skills).

In 1987, Lovaas published his report of research conducted with 38 autistic children using methods of applied behavior analysis 40 hours per week. Treatment occurred in the home and school setting. After the first two years, some of the children in the treatment group were able to enter kindergarten with assistance of only 10 hours of discrete trial training per week, and required only minimal assistance while completing first grade. Others, those who did not progress to independent school functioning early in treatment, continued in 40 hours per week of treatment for up to 6 years. All of the children in the study were re-evaluated between the ages of six and seven by independent evaluators who were blind as to whether the child had been in the treatment or control groups. There were several significant findings:

1) In the treatment group, 47% passed “normal” first grade and scored average or above on IQ tests. Of the control groups, only one child had a normal first grade placement and average IQ.

2) Eight of the remaining children in the treatment group were successful in a language disordered classroom and scored a mean IQ of 70 (range = 56-95). Of the control groups, 18 students were in a language disordered class (mean IQ = 70).

3) Two students in the treatment group were in a class for autistic or retarded children and scored in the profound MR range. By comparison, 21 of the control students were in autistic/MR classes, with a mean IQ of 40.

4) In contrast to the treatment group which showed significant gains in tested IQ, the control groups’ mean IQ did not improve. The mean post-treatment IQ was 83.3 for the treatment group, while only 53.3 for the control groups.

In 1993, McEachin, et al investigated the nine students who achieved the best
outcomes in the 1987 Lovaas study. After a thorough evaluation of adaptive functioning, IQ and personality conducted by professionals blind as to the child’s treatment status, evaluators could not distinguish treatment subjects from those who were not. Subsequent to the work of Lovaas and his associates, a number of investigators have addressed outcomes from intensive intervention programs for children with autism.

For example, the May Institute reported outcomes on 14 children with autism who received 15 - 20 hours of discrete trial training (Anderson, et al, 1987). While results were not as striking as those reported by Lovaas, significant gains were reported which exceeded those obtained in more traditional treatment paradigms. Similarly, Sheinkopf and Siegel (1998) have recently reported on interventions based upon discrete trial training which resulted in significant gains in the treated children’s’ IQ, as well as a reduction in the symptoms of autism. It should be noted that subjects in the May and Sheinkopf and Siegel studies were given a far less intense program than those of the Lovaas study, which may have implications regarding the impact of intensity on the effectiveness of treatment.

...

Conclusions

There is a wealth of validated and peer-reviewed studies supporting the efficacy of ABA methods to improve and sustain socially significant behaviors in every domain, in individuals with autism. Importantly, results reported include “meaningful” outcomes such as increased social skills, communication skills academic performance, and overall cognitive functioning.

These reflect clinically-significant quality of life improvements. While studies varied as to the magnitude of gains, all have demonstrated long term retention of gains made.


Mental Health: A Report of the US Surgeon General 1999

Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior. A well-designed study of a psychosocial intervention was carried out by Lovaas and colleagues (Lovaas, 1987; McEachin et al., 1993). Nineteen children with autism were treated intensively with behavior therapy for 2 years and compared with two control groups. Followup of the experimental group in first grade, in late childhood, and in adolescence found that nearly half the experimental group but almost none of the children in the matched control group were able to participate in regular schooling. Up to this point, a number of other research groups have provided at least a partial replication of the Lovaas model (see Rogers, 1998).

Consensus and Fully Informed Choices

The above are some of the leading statements by credible agencies that have reviewed the evidence bases in support of various autism interventions. No other intervention has anywhere near the same evidence in support of its efficacy as documented by these credible American agencies. Contrary to the unsubstantiated statement by Kathleen Provost there is in fact a clear consensus that ABA is the treatment of choice for autism.

If Kathleen Provost, and the Autism Society Canada, wish to exercise their information role responsibly they should make this clear to the public. Parents of newly diagnosed autistic children should be told that they might be gambling their child's precious development time, and their future development potential by forgoing ABA in favor of "feel good" unproven alternatives. In failing to do so they are failing autistic children in Canada.

autism

Run the Dream Celebrates World Autism Awareness Day

RUN THE DREAM LAUNCHES "THEIR STORIES" INITIATIVE

IN CELEBRATION OF UNITED NATIONS WORLD AUTISM AWARENESS DAY

Internet-enabled video interviews with parents, family members, caregivers, and persons with an Autism Spectrum Disorder will be recorded and made available for the public on the Run the Dream website.

April 2, 2008 is the first annual United Nations (UN) World Autism Awareness Day, fulfilling the UN resolution which encourages all member states to take measures to raise awareness about autism throughout society. In support of this resolution, Run the Dream is launching Their Stories, web-based video interviews with the persons most affected by an Autism Spectrum Disorder (ASD), who can best describe what it means.

Run the Dream invites parents, family members, caregivers, and persons with ASD to share their stories, via a video interview which can be recorded on the Run the Dream web site, http://www.runthedream.ca/stories.html#stories, starting immediately, and viewed on the same web site starting on April 2, World Autism Awareness Day. Stories will be recorded and shared with the public on the Run the Dream website until the run is completed at the end of November this year. Run the Dream will continue to share these stories by then compiling the videos from each province and presenting them to the respective Premier, and likewise will present all videos from across Canada to the Prime Minister. The Their Stories initiative is the very first of its kind in Canada using an automated web-based structured interview process, and based on our research, is a global first as well. This innovation is possible through the generous sponsorship of Minavox ( www.minavox.com) and the use of their ground-breaking Canadian-developed technology, Savisys.

In the few days since Jonathan Howard started his run, stories from across Canada have flooded Run the Dream's e-mail inboxes, "Jonathan Howard, created the concept of Run the Dream and started a cross-Canada run in support of ASD on March 25. Even though we're only in the beginning days of this journey we've already received touching stories and offers of support from a large number of Canadians who want to tell their story, and who want to help in making Run the Dream a success. In our view these stories are worthy of sharing with every Canadian. We're delighted that Minavox is making their software and service available to Run the Dream for this purpose," says Bill Robertson, Chairman of Run the Dream's organizing committee.

Working with Autism Society Canada (ASC) http://www.autismsocietycanada.ca/Run the Dream wants to ensure all voices are heard. Those people who do not have access to a computer or a webcam can share their stories using any PC with a webcam, including those of ASC's community partners, through the Their Storiesweb portal. "ASC represents a very large collective voice of the autism community in Canada; we applaud this opportunity to tell Their Stories", says Kathleen A. Provost, CFRE- Executive Director, Autism Society Canada.


This innovation is possible through the generous sponsorship of Minavox (www.miavox.com ) and the use of their ground-breaking Canadian-developed technology Savisys. "Minavox is proud to be associated with Run the Dream and Autism Society Canada, and to be able to provide its services to let Their Stories be heard." said Todd Nowensky, Managing Director and Vice-President of Business Development for Minavox Inc. Added Geoff Kushnir, Managing Director and Vice-President of Technology: "In our view this is one of the best illustrations of what is being described as the new era of the internet, Web 2.0."



Jonathan Howard, 24, McMaster University alumnus, and accomplished athlete developed the Run the Dream campaign to help raise awareness of the challenges faced by individuals with ASD and their families. Run the Dream is an eight month solo run across Canada, starting in St. John's, NL on March 25 and finishing in Victoria, BC on or about November 21. The run will cover approximately 9000km, crossing 10 provinces and more than 650 communities across the country. The campaign is targeted to raise $2.5 million to benefit children affected by ASD and their families. Jonathan appreciates the groundswell of support that has already formed behind his effort and would particularly like to acknowledge the contributions of the sponsors (listed below) of Run the Dream.


# # #


For more information on Run the Dream or to schedule an interview

with Jonathan Howard please contact

Alex Bittner at: alex.bittner@runthedream.ca, 888-507-5885 ext. 4.

For more information on Autism Society Canada please contact:

Lynn Andrews, Director of Communications:

lynn@autismsocietycanada.ca

For more information on Minavox please contact:

Ada Nowensky, VP of Marketing
anowensky@minavox.com


Run the Dream would like to thank their sponsors:

Telus – Official telecommunications sponsor for Run the Dream

Gatorade

Landmark Sport Group

Mariposa Cruises

Minavox

Evolution Rehabilitation and Personal Training Ltd

Whitewater Web Solutions

Brightworks

Spa Sensations

Lauren Canzius
General Manager, Media Relations & Communications
Run The Dream
lauren.canzius@runthedream.ca

autism

Run the Dream - Jonathan Howard Runs Across Canada for Autism

INSPIRED YOUNG CANADIAN RUNS ACROSS CANADA FOR CHILDREN'S AUTISM CHARITIES

Jonathan Howard's Run The Dream Campaign is Targeted to Raise
$2.5 Million for Autism

On March 25, 2008, in St. John's NL, Jonathan Howard dipped his shoe into the Atlantic Ocean, signifying the beginning of an eight month solo run across Canada, finishing in Victoria, BC on or about November 21.

The run will cover approximately 9000km, crossing 10 provinces and more than 650 communities across the country. The campaign, with the inspirational name Run The Dream, is targeted to raise $2.5 million to benefit children affected by Autism Spectrum Disorder (ASD) and their families.

In partnership with Autism Society Canada, Jonathan is proud to dedicate his run to the cause and to children everywhere, "I want children to dream like anything's possible," says Jonathan. "This run is my way of telling children and their parents to never stop dreaming." Working together, Autism SocietyCanada and Run The Dream will raise awareness about ASDs. "Children, youth and adults with ASDs and their families from coast-to-coast will be watching and cheering Jonathan on as he Runs the Dream! " says Kathleen A. Provost, CFRE- Executive Director, Autism Society Canada.

Day one of the run included a visit to St. John's City Hall, Mile Zero of the Trans Canada Highway , a rally with students at Memorial University and an official launch with the Autism Society of Newfoundland and Labrador at the Elaine Dobbin Centre. From St. John's, Jonathan will continue to crossNewfoundland toward the town of Holyrood.

"We the Autism Society of Newfoundland and Labrador, no strangers to chasing the dream, will be with Jonathan, in spirit, every step of the way," says Joyce Churchill President of Autism Society of Newfoundland and Labrador .

Coinciding with Jonathan's run is the first annual United Nations World Autism Awareness Day taking place on April 2. He will be near Gander NL into the 9th day of his run at that time.

Kicking off the campaign was a launch party on March 20 in Jonathan's home town, Mississauga, ON. Events and fundraising opportunities are scheduled throughout the eight-month campaign in cities across the county. You can log on to www.runthedream.ca for more information or to make a donation.

Jonathan Howard, 24, McMaster University alumnus, and accomplished athlete developed the Run The Dream campaign to help raise awareness of the challenges faced by children with ASD and their families. Jonathan appreciates the groundswell of support that has already formed behind his effort and would particularly like to acknowledge the contributions of the sponsors (listed below) of Run The Dream.

# # #

For more information or to schedule an interview with Jonathan Howard please contact Alex Bittner at: alex.bittner@runthedream.ca, 888-507-5885 ext. 4.

autism

Autism Society Canada Celebrates World Autism Awareness Day with Call to Action

Autism Society Canada Celebrates World Autism Awareness Day

with Call to Action

OTTAWA, ONTARIO--(Marketwire – March 25, 2008)


On December 18, 2007, the United Nations General Assembly adopted resolution 62/139 World Autism Awareness Day, by unanimous consent, encouraging UN Member States to take measures to raise world-wide awareness about autism and to promote early diagnosis, early intervention and necessary services for individuals with ASD and their families. The resolution designates April 2nd as World Autism Awareness Day - a UN Day to be observed every year starting in 2008.


Autism Society Canada (ASC) joins other organizations around the world in welcoming this opportunity to celebrate the unique strengths of our Autism Spectrum Disorder (ASD) community and to bring world attention to the critical and complex needs of individuals and families living with autism.


ASC’s President, Christine Dade applauds the UN for this important recognition and also pays tribute to our strong autism community in Canada… “…The ASD community in Canada includes thousands of diverse individuals with many unique abilities and talents - at Autism Society Canada we are very honoured to work with an Advisory Committee of Adults with ASDs from across the country who share their experience and advise our Board on adult needs and issues. We would also like to mark this special day by paying tribute to our provincial and territorial network of committed parents and family members living with autism who have developed truly exceptional skills, knowledge and perseverance while working to support their loved-ones in the face of so many barriers. Individuals with ASDs and their families are an inspiration to all Canadians”.


Incidence of autism is now as high as 1/150 with rates appearing to be increasing across the globe. Based on data collected from North America, Western Europe and Japan, it is conservatively estimated that 35 million people worldwide have autism. ASD usually presents lifelong challenges for those diagnosed, for their family members and for society as a whole. Over 200,000 Canadian children, youth and adults are affected by ASD and many have very complex needs. These figures do not account for the millions of parents, other family members, caregivers, employers, teachers, researchers, professionals, and others who are also deeply affected, emotionally, socially and financially by an alarming inequity in available treatment, services, and funding for ASD.


Autism Society Canada has been working for over thirty years to promote a comprehensive federal National Autism Spectrum Disorder Strategy – we feel national action and commitment on ASD is absolutely vital in order to bring equal access to targeted health and social services for all Canadians with ASDs. There are currently glaring gaps in the availability of fully funded treatment and services for children, youth and adults with ASD. The lifespan needs facing our community in Canada and around the globe are complex and the treatment, service and accommodation needs across the ASD spectrum are multi-faceted.


All of us in the ASD Community – persons with ASD, parents and other family members, health care professionals, educators and researchers are joining together to ensure that autism finds its rightful place in the health, education and social services systems – we envision a Canada that sets an example as world leader, with a progressive, comprehensive response to autism…a Canada where individuals with ASDs are enabled to reach their full potential.

On this landmark World Autism Awareness Day we call on our federal leaders to take up the UN’s global challenge to act quickly to ensure the rights of some of our most unique and vulnerable citizens.


Autism Society Canada is a nationally incorporated charity founded in 1976. ASC is a federation of Canada-wide provincial and territorial autism societies whose collective memberships represent a very large community of individuals affected by ASD and their families in Canada. ASC is committed to advocacy, public education, information and referral, and the support of its provincial and territorial autism societies.


For more information please contact:

Lynn Andrews, Director of Communications, Autism Society Canada: lynn@autismsocietycanada.ca

autism

Autism Society Canada Letter to Health Minister Clement re CIHR Autism Symposium

October 3rd, 2007

Honorable Tony Clement

House of Commons
Ottawa, Ontario
K1A 0A6


cc: Rémi Quirion, PhD
Scientific Director
CIHR Institute of Neurosciences, Mental Health and Addiction

cc: Barbara Beckett, PhD
Assistant Director
CIHR Institute of Neurosciences, Mental Health and Addiction


Dear Honorable Tony Clement,

Autism Society Canada (ASC) recently received an invitation to send a representative to the
previously cancelled (June 2007) Canadian Institutes of Health Research Autism Symposium now taking place on November 8th-9th, 2007 in Toronto. The CIHR is hosting this event in collaboration with Health Canada and the Public Health Agency of Canada.


The symposium was described in our invitation as “part of a package of federal initiatives that the Honourable Tony Clement, the federal Minister of Health, announced in November 2006 to
improve knowledge and research on autism spectrum disorders (ASD) and to help address the
challenges facing individuals with ASD and their families.”

The symposium goals stated in the original March 2007 letter were as follows:

Provide latest research results for families, health care professionals and other service providers, policy makers & administrators. Provide researchers with perspectives of families and service providers regarding what types of interventions are perceived as most effective and need to be further investigated .

Provide families, service providers, researchers, and policy makers & administrators with information about what is being done in Canada and abroad, to identify best practices in intervention and service delivery.


The revised goals outlined in this new invitation are as follows:

To inform service providers, policy makers, and those with autism and their families about the scientific evidence base on autism. To assist the research community in planning further research.

We are deeply concerned by what seems like a redirection of this meeting. ASC hosted the first
Canadian Autism Research Workshop in Toronto in 2002, with lead sponsors: the Canadian
Institutes of Health Research (CIHR) and the National Alliance for Autism Research (NAAR) in the U.S.

While we appreciate and welcome this opportunity to participate in moving the autism
research agenda forward, we do have concerns about what appears to be dwindling community
input into this process as well as how exactly this event will “address the challenges facing
individuals with ASD and their families.”

We would like to know if this research symposium is meant to replace the broader stakeholder
symposium you announced last November – an ASD stakeholder symposium in 2007 to further
the development of ASD knowledge and dissemination among health care professionals,
researchers, community groups, teachers, individuals and family members? There is great
community concern that your department has chosen to respond only to the research components of both your 2006 promises and the Senate recommendations of May 2007.

In its final report entitled, PAY NOW OR PAY LATER: Autism Families in Crisis, the Senate
Committee made many important recommendations to the federal government, prioritizing the
following:

an autism strategy to address the complex needs of our community – one that would be inclusive of all stakeholders, including those with ASD;

to convene a federal/provincial/territorial ministerial conference to look at innovative funding arrangements for the purpose of financing autism therapy in order to establish an “appropriate level of funding by the federal government”; and,

creation of an Autism Research Network with substantial new funding through CIHR.

While the research component is important, there are currently glaring gaps in the availability of fully funded treatment for children with Autism Spectrum Disorders, as well as damaging service gaps for adults and youth with ASD. Autism Society Canada strongly believes that federal leadership is needed to develop and commit to a comprehensive National Autism Strategy. The lifespan needs facing our community are complex. The treatment, training, service and accommodation needs across the ASD spectrum are multi-faceted. Families and people with ASD are tired of waiting.

As you are aware, ASC represents a federation of Canada-wide provincial and territorial autism
societies whose collective memberships include a very large community of individuals with ASD
and their families in Canada. We have carefully outlined our concerns regarding the process by
which this research symposium has come about in our letter to you of August 6th, 2007 letter to
Hon. Tony Clement . Some of the concerns centered on the last-minute notice for representatives with ASD who need time to make plans and prepare. We have yet to receive a reply to this letter.

We are being asked by many members of our community, including researchers, whether CIHR has ensured fair regional representation at this closed meeting. Our members provide direct services to the ASD community. They are very well-positioned to provide comprehensive regional input by identifying the practical needs and realities for children and adults with ASD in their respective areas. They feel this input should inform the planning of future research initiatives. They have requested that CIHR, if it has not already done so, ensure that each member society of ASC is invited to put forward a representative of their choosing to this research symposium.

Quite a number of people have made enquiries of CIHR about representation and have been told by CIHR that this is a complex scientific meeting – the implication being that community
representatives will find the content somehow confounding. CIHR staff should be aware that when they are speaking with ASD parents, people with ASD and community representatives, they are in fact, speaking with “experts in the field”. In the invitation letter, CIHR has referred to the research symposium as being, above all…… an opportunity for knowledge exchange, networking, and community-building. Can a closed research meeting with a private invitation list and no available genda, help to build community?

Finally we would like to remind the Minister that expecting people with ASD and their families,
who are already shouldering serious financial burdens, to front the costs for attending this meeting in advance was unrealistic and actually sets up a barrier to participation. We are sure this is not what you or CIHR intended.


ASC looks forward to working with you and CIHR to further the ASD research agenda. We also
look forward to addressing the other key National ASD Strategy issues brought forward in your
November, 2006 announcement and especially in the 2007 Senate Report. October is Autism
Awareness Month, let’s work together to ensure that all Canadians with ASD will one day be able to reach their full potential.

Sincerely,

Christine Dade, President,


On behalf of ASC’s Board of Directors:

Michael Lewis, First Vice-President, (representing British Columbia)

Vic Douse, Director, Second Vice-President, (representing Prince Edward Island)

Nancy Adams, CA, Treasurer, (Chair, Finance Committee)

David Jardine (representing Alberta)

Sandra McKay, Director, (representing Manitoba)

Brian Rimpilainen, Director, (representing New Brunswick)

Doreen Stryde, Director, (representing Newfoundland)

Lynn Elkin, Director, (representing Northwest Territories)

Vicki Harvey, Director (representing Nova Scotia)

Ginny Pearce, Director, (representing Ontario)

Lynn Verklan, Director, (representing Saskatchewan)

Lisa Rawlings, Director, (representing Yukon Territory)

Dr. Jeanette Holden, Director, (Queen’s University: ASD-Canadian-American Research Consortium)

Kristian Hooker, Director, (Chair, Advisory Committee of Adults with ASD)

Elizabeth Oliver, Director (Director-at-Large)