Why ABA for Autism? Because Children with Autism Disorders Deserve Evidence-Based Intervention and ABA Meets That Standard

Autism Canada Foundation, a Canadian autism charity,  promotes itself as "The PREMIER Resource for Information on Autism Spectrum Disorders" but  typically downplays the importance of evidence support for ABA as the Premier autism intervention while promoting interventions with less substantial  evidence bases as determined by study and  credible authorities.

 Why criticize Autism Canada Foundation an autism charity? Why ABA for Autism? Why Evidence Based Intervention?  Because, as stated by Couper and Sampson in the Medical Journal of Australia 11 years ago,  ineffective therapies, while they may be immediately harmless, waste the child's valuable therapy time and parents' money.  Delay in implementing effective treatment may have a negative impact on the child's ultimate outcome.  ABA is the only intervention to date that meets the evidence based standard in every credible review, a fact downplayed by the Autism Canada Foundation.

ABA has for many years been confirmed by study and credible authorities as  the most substantially evidence based effective autism intervention.  If parents choose to try other methods they should in fact make informed choices. Autism Canada is a charitable organization which will be staging an autism conference this October called Changing the Course of Autism 2014.  The brochure highlights RDI and the Son-Rise program but makes no express mention of  Applied Behavior Analysis.  

As the following credible reviews indicate RDI and Son-Rise are not supported by the same level of evidence of their effectiveness as ABA ( I can't find any authoritative review mentioning any level of evidence  support for Son-Rise).   What the Autism Canada conference attendees are unlikely to be informed is that when it comes to autism therapies it  is not a close call - ABA was and remains the most substantiated, evidence based, effective autism intervention. 

The US Surgeon General, the MADSEC Maine Administrators of Services for Children with Disabilities (Maine Autism Task Force) Report (2000 revision),  American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders, and a recent article in the Canadian Medical Association Journal all confirm ABA as the most effective autism intervention (specific treatment necessary for associated medical conditions - eg. seizures, gastro intestinal).  And as Couper and Sampson wrote ... Children with autism deserve evidence based intervention:

1. Couper and Sampson - Children with autism deserve evidence based intervention.

Children with autism deserve evidence-based intervention  

Jennifer J Couper and Amanda J Sampson

Med J Aust 2003; 178 (9): 424-425.

Jennifer J Couper and Amanda J Sampson, in the 2003 editorial in the MJA, reviewed some of the evidence in support of the effectiveness  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." 

- [Bold Highlighting Added - HLD]

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

2. American Academy of Pediatrics - Management of Children with Autism Spectrum Disorders, (2007, reaffirmed 2010)

The American Academy of Pediatrics article Management of Children With Autism Spectrum Disorders, Scott M. Myers, MD, Chris Plauché Johnson, MD, MEd, the Council on Children with Disabilities (2007), reaffirmed (2010):

"Applied Behavior Analysis

Applied behavior analysis (ABA) is the process of applying interventions that are based on the principles of learning derived from experimental psychology research to systematically change behavior and to demonstrate that the interventions used are responsible for the observable improvement in behavior. ABA methods are used to increase and maintain desirable adaptive behaviors, reduce interfering maladaptive behaviors or narrow the conditions under which they occur, teach new skills, and generalize behaviors to new environments or situations. ABA focuses on the reliable measurement and objective evaluation of observable behavior within relevant settings including the home, school, and community. 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"

 3. Australasian Society for Autism Research - A Review of the Research to Identify the MostEffective Models of Practice in Early Intervention for Children with AutismSpectrum Disorders - (2012)

As with every other major research review of the effectiveness of early autism interventions only ABA, applied behavior analysis, received the highest rating: E  - Established/Eligible based on evidence.

 4. Canadian Medical Association Journal, Autism spectrum disorder: advances in evidence-based practice (2014)

 An article in the January 13, 2014 issue of the Canadian Medical Association Journal, Autismspectrum disorder: advances in evidence-based practice, confirms what American authorities have told us for decades, from the US Surgeon General to MADSEC and the American Academy of Pediatrics, ABA still represents evidence based, effective best treatment practice while "Research on non-ABA–based treatments is sparse and shows limited efficacy.":

" Autism spectrum disorder: advances in evidence-based practice "What treatments and interventions are available, and are they effective?

 The goal of existing interventions is to facilitate the acquisition of skills, remove barriers to learning and improve functional skills and quality of life.

 Behavioural interventions

  Current best practices for preschool-aged children with ASD include a focus on improving language, cognitive and adaptive skills using applied behaviour analysis (ABA) techniques.58 Applied behaviour analysis refers to the application of empirically derived learning principles(i.e., the antecedent–behaviour–consequence contingency) to produce meaningful changes in behaviour.59 Such strategies are carefully engineered and implemented through a variety of approaches (e.g., discrete trial teaching to more naturalistic learning contexts) to teach skills and reduce problem behaviour. Applied behaviour analysis interventions can be provided in a variety of settings (e.g., home, specialized treatment centres, specialized or public schools) by a range of front-line therapists, ideally supervised by a psychologist or board-certified behaviour analyst who specializes in ASD.

 A recent overview of meta-analyses60 found significantly enhanced outcomes associated with early intensive ABA-based treatment (typically for 2–3 yr) in four of five included meta-analyses (effect sizes 0.30 to > 1); these findings have since been bolstered by a sixth meta-analysis.61 Gains appear to be greatest in verbal intelligence quotient (IQ) and language communication domains,62,63 for children with stronger pretreatment skills, if treatment is started earlier,64 and with greater intensity or duration of intervention. 60–62,64 These gains achieved in various domains have been summarized in a recent Cochrane review.63 Although the overall quality of evidence is low, it is the best evidence available. A recent study in Ontario reported predictors of outcome that account for some heterogeneity in treatment response.65

 A recent RCT supported the efficacy of ABA-based intervention in toddlers by showing improvements in IQ, adaptive skills and diagnostic classification.37 Models vary, notably by how ABA principles are implemented, but everyday contexts (e.g., free play v. “tabletop”) and activities based on the child’s interests (v. therapist’s agenda) have advantages, including greater generalization of learning.66 Questions remain about which forms and intensities of treatment are most effective for which children.

 Research on non-ABA–based treatments is sparse and shows limited efficacy.67 Translation of evidence-based intervention into community practice is being evaluated, including in Canada.68 A key question is whether effective high-quality programs can be less costly and more sustainable; the findings from Nova Scotia are promising.38 Studies of the effectiveness of treatment programs for older children, youth and adults with ASD are scarce. Benefits have been reported for structured teaching practices, including ABA based interventions, for a wide range of skill deficits and maladaptive behaviours.58" [Highlighting added - HLD]

Hopefully conferences such as the Autism Canada Foundation 2014 conference are not seeking to change the course of autism intervention away from evidence based interventions toward largely  anecdotal approaches.  Hopefully attendees and those who access the conference information will be informed of the importance of evidence based support for autism interventions and the level of credible evidence in support of ABA effectiveness, a level of evidence support which remains unmatched by ANY other behavioural, social or educational intervention.

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

Michelle Dawson's False Claims Allegations? Where's the Evidence?

Jonathan Mitchell of Autism's Gadfly has run afoul, like so many others have, of Michelle Dawson.

On the discussion board Misbehaviour of Behaviourists Ms Dawson has accused Jonathan of making false statements about her. Apparently Jonathan made a statement about Ms Dawson's communications with the IACC, the Interagency Autism Coordinating Committee that might not have been correct; or at least not literally correct. Ms Dawson takes Jonathan to task over the issue at the Misbehaviour of Behaviourists. Then, out of left field, Ms Dawson also accuses me of making false claims about her as well:

Michelle Dawson	8995
03-06-2009 08:31 PM ET (US)

Edited by author 03-06-2009 08:32 PM

Still in the "pants-on-fire" dept., for what Mr Mitchell wrote on his blog, see /m8990. What Mr Mitchell has claimed on his blog is false. He made it up.

If Mr Mitchell did not make anything up, as he claims, then I'm sure he can provide sources to support his claim that I was "writing letters trying to influence the direction of NIMH autism research" and so was Mike S.

I suggest that as with Mr Doherty, no one should believe Mr Mitchell when he makes any claims about people he disagrees with, unless Mr Mitchell can provide sources (in this case, links to all the "letters" Mike S and I have written to the NIMH) to support his views.

Some day when I have a lot of spare time, I'll try to find and list all the false claims, misrepresentations, etc., made about me and my colleagues by Mr Mitchell and Mr Doherty.

As you can see Ms Dawson did not provide any specifics, particulars, examples, information or evidence of any kind whatsoever to substantiate her out of left field allegations against me. She just decreed that I have made false claims and informed her loyal subjects that some day, when she had the time, she would bother herself with substantiating her allegations. That my friends is the work of Michelle Dawson, autism researcher and anti-ABA activist.

To my knowledge the statements that I have consistently made about Ms Dawson are that:

1) She is an anti-ABA activist ( see the title of her forum (the Misbehaviour of Behaviourists), her appearances before the Supreme Court of Canada and the Canadian Senate in opposition to ABA for Canada's autistic children and her numerous media comments opposing ABA.)

2) That her anti-ABA views are inconsistent with the views of numerous credible authorities in the United States, like the US Surgeon General, the American Academy of Pediatrics, the MADSEC (Maine) Autism Task Force, the NY State Department of Health, and the Association for Science in Autism Treatment to name the most prominent.

I stand by these statements which are factually correct. And I caution anyone against putting too much weight on any of Michelle Dawson's allegations and statements that she has made against anyone, professional, reporter, parent or autistic person who dares to disagree with her views.

autism

Michelle Dawson, ABA and Autism in 2009

I read recently still more anti-ABA commentary from Ms Michelle Dawson, a long time crusader against government provision of Applied Behavioral Analysis for autistic children. Together with her colleague, Dr. Laurent Mottron, she has appeared as an "autistic" before the Supreme Court of Canada and before a Canadian Senate committee examining funding of autism treatment to oppose government funding of ABA treatments for autistic children.

Ms Dawson also comments frequently on the internet, and in the mainstream media, to speak on behalf of "autistics" and to advocate against ABA for autistic children in Canada. Ms Dawson takes great pleasure in explaining how the professionals who contribute to the American Academy of Pediatrics, the MADSEC (Maine) Autism Task Force, the New York State Department of Health, the Association for Science in Autism Treatment, and any of the professionals who actually work with autistic children, including heaven forbid, low functioning autistic children, are wrong about ABA and its effectiveness in helping autistic children make substantial, sustained gains as summarized in 2007 by the AAP:

Applied Behavior Analysis

Applied behavior analysis (ABA) is the process of applying interventions that are based on the principles of learning derived from experimental psychology research to systematically change behavior and to demonstrate that the interventions used are responsible for the observable improvement in behavior. ABA methods are used to increase and maintain desirable adaptive behaviors, reduce interfering maladaptive behaviors or narrow the conditions under which they occur, teach new skills, and generalize behaviors to new environments or situations.

ABA focuses on the reliable measurement and objective evaluation of observable behavior within relevant settings including the home, school, and community. 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

Given the well documented record of sustained gains reported for autistic children using ABA, as reported by such credible agencies, it is difficult to understand the opposition by Michelle Dawson and her colleague and supporter Dr. Laurent Mottron. The writings of neither of these two staunch opponents of ABA disclose any first hand involvement with ABA.

Nor is it clear whether they have any direct contact with severely impaired autistic persons, you know, the ones who do NOT appear before legal, political and media entities on a regular basis, the people, like my son who require 24 hour supervision, the ones living in institutional care, THOSE "autistics", the ones whose existence Dr. Mottron and Ms Dawson rarely, if ever, mention. Dr. Mottron publishes several papers a year in learned publications about autistic savants and persons with Aspergers and High Functioning Autism. (With 2009 literally around the corner look for more papers from Dr. Mottron on autistic savants and the charcteristcs of superior autistic intelligence). Dr. Mottron is OK with Canadian tax dollars going to support his "research" into savant intelligence but opposes funding of ABA interventions for autistic children even those with limited communications, the "autistics" who do not appear in his frequently published papers.

Michelle Dawson, in addition to being a researcher working with Dr. Mottron, and assisting his investigations of high functioning autism, is also herself an "autistic". Affidavits filed by Dr. Mottron and Ms Dawson, then a postal worker, in support of her appearance as an intervenor before the Supreme Court of Canada describe her as an autistic person or autistic individual. She also states that she was diagnosed with "autism". Her specific autism spectrum disorder, or pervasive developmental disorder, is not expressly mentioned in either affidavit.

In her affidavit Ms Dawson, despite a slim affidavit record of her own "autism", challenged the legitimacy of the parents and professionals who appeared in the proceedings:


20.

In addition, no autistic individuals testified or participated in the process. Yet there are autistic individuals who could have coherently and cogently explained the realities of autism, with both its benefits and weaknesses to the courts.


21.

The courts were only left with the perspective of parents and the state in what became an argument over who was responsible to assume the costs of dealing with the disability;


22.

I believe that the perspective I could bring to this Court would be of assistance to the Court and allow it to have a fuller understanding of the issues before it;


23.

I know of no association or group seeking to intervene in these proceedings who could bring the true perspective of autistic individuals;


24.

While several groups and associations exist to promote the rights of autistic individuals, in my experience, they are usually dominated by parents and professionals, and very seldom have any input from autistic individuals, even when the autistics seek to participate in these organizations.


Ms Dawson intervened in Auton, according to her solemnly declared affidavit, because she offered the true perspective of autistic individuals. She made this solemn declaration without stating her specific autism spectrum disorder, elaborating on why she herself was not diagnosed until she was an adult in 1993-4, or discussing any differences that might exist between "autistics" who can appear before the Supreme Court and those who struggle with basic language. Nor did she explain in her affidavit how she could speak on behalf of those autistic children and adults who, unlike her, cannot speak at any significant level.

A few years ago I had the pleasure of two very brief telephone conversations with Ms Dawson. She contacted me because I was at that time the President of the Autism Society New Brunswick and she was interested in obtaining a copy of a document prepared for the ASNB by a Universite de Moncton law professor pertaining to autism and the Canadian constitution. I was surprised later, when learning of her intervention in the Auton case in the Supreme Court of Canada, that she purported to speak on behalf of so many other autistic persons; given her obvious abilities contrasted with the severe challenges faced by so many autistic persons, including my son.

On reflection I also remembered our brief conversations and the fact that despite taking on this self appointed representational role on behalf of "autistics", including my son, she had never asked me, during those conversations any questions about autistic people in New Brunswick or the health, education or living conditions of persons with autism spectrum disorders in New Brunswick. She disclosed no obvious interest in informing herself, while talking to the then President of ASNB about conditions faced by autistic persons in New Brunswick. (Nor did Ms Dawson ask whether we had any persons with an Autism Spectrum Disorder serving on our Board of Directors)

Of course Ms Dawson's failure to ask me any such questions now makes perfect sense having read her affidavit. As a mere parent of an autistic child I had no information that would be of any value to Ms Dawson who after all is an "autistic". Despite the responsibilities that nature, our society and our laws bestow upon parents to care for and nurture our children, we are not qualified to represent our autistic children's interests in Ms Dawson's view. Despite living with them, caring for them, loving them and sacrificing for our children, despite seeing their challenges and struggles up close and helping them overcome those challenges we can not possibly offer the perspective that Ms Dawson, a total stranger with no commitment to them or responsibility for their well being, can offer because she is after all an "autistic".

My son is severely "autistic". His diagnosis is autistic disorder, assessed with profound developmental delays. He can not speak for himself in ordinary daily interaction let alone before the Supreme Court of Canada. The information I just presented is supported by professional assessments and is more information than Michelle Dawson supplied in her leave to intervene affidavit in Auton. Michelle Dawson, whatever her diagnosis, has nothing in common with my son and does not, and never did, bring his "perspective" to courts, legislative bodies or in her media appearances.

Michelle Dawson will continue in 2009 to tell the world that the AAP, the US Surgeon General, the New York State Department of Health, the MADSEC (Maine) Autism Task Force, the Association for Science in Autism Treatment, Dr. Mickey Keenan of the University of Ulster, Dr. Doreen Granpeesheh of the Center for Autism and Related Disorders, Dr. Alan Harchik of the May Institute, Dr. Paul McDonnell, Professor Emeritus (Psychology), Dr. Ivar Lovaas, and literally thousands of other health care professionals and researchers are all wrong about the effectiveness of ABA in helping autistic children make sustained substantial gains in intellectual and social skills.

Meanwhile in 2009, Michelle Dawson and Dr. Mottron will undoubtedly continue to receive Canadian tax dollars for their research into, and publish papers about, autistic savants, Aspergers and high functioning autism. Curiously omitted from their scholarly works will be the severely autistic, those with cognitive deficits, those who injure themselves and others and live lives of dependency and solitude after the parents and others who actually care for them are gone.

If past is prologue Ms Dawson will still not ask about those "autistics" much less fortunate than her, like my son, or other autistic persons in New Brunswick, or elsewhere. Ms Dawson will continue in 2009 to ignore the existence of intellectually impaired, communication challenged, severely autistic persons on whose behalf she purports to speak. And she and Dr. Mottron will continue to oppose government funding of ABA for autistic children.

autism

This Christmas This Autism Dad Says Thank You

I started this blog as an extension of the autism advocacy in which I have been engaged for the past 10 years. Here in New Brunswick, Canada parents who were active autism advocates fought to secure pre-school government funded ABA intervention by University of New Brunswick trained Autism Support Workers and Clinical Supervisors. We also fought to extend that service model into the school system where UNB trained Teacher Aides and Resource Teachers provide ABA instruction to autistic students. While far from perfect, these efforts make New Brunswick one of the best jurisdictions in Canada or the United States in which to raise autistic children.

We had substantial assistance in our efforts from parents in British Columbia (Auton) and Ontario (Deskin-Wynberg) who fought court battles, ultimately unsuccessfully, but whose cases provided careful public examination, particularly in the trial level courts, of the existing scientific thought about autism and effective autism intervention - meaning Applied Behavioral Analysis. We had help from the United States where, unlike the Canadian health and research authorities, credible agencies like the US Surgeon General, the New York State Department of Health and the Maine (MADSEC) Autism Task Force reviewed decades of research and provided clear, coherent guidance and authority for use in our autism advocacy. God Bless America!

We had the intellectual leadership of Professor Emeritus (Psychology) and Clinical Psychologist Paul McDonnell and the organizational savvy and drive of Ann Higgins of the University of New Brunswick College of Extended Learning. They provided us with a clear focus on evidence based approaches to autism interventions and the means by which to obtain such interventions for our autistic children.

We had the considerable abilities and inspirational support of a very smart gentleman with Aspergers named Jason Oldford who demonstrated his own determination in addressing his challenges with every meeting and with his public speaking efforts. And we had a core group of very, very tenacious parents of autistic children who put a lot on the line with their family time and careers in the nursing, military, financial services, and a variety of other occupations.

To the autism support workers, clinical supervisors, teacher aides, resource teachers, educators and civil servants, to all these people and to our New Brunswick politicians who listened and did the right thing I say thank you. Much more remains to be done, particularly in youth and adult residential care, but for what we have today I say again thank you.

I also thank Autism Speaks, an organization which has done great work in creating Autism Awareness and raising funds for research. Autism Speaks did not exist during most or our local autism advocacy and has made no direct contribution to autism efforts in this area. It is an organization under attack from all quarters these days from those who assert that vaccines cause autism to "neurodiversity" advocates and persons with Aspergers and High Functioning Autism who oppose the very concept of curing and treating autism. Even some internet blogging parents who want immediate help in their efforts to help their children now attack Autism Speaks.

Personally I believe Autism Speaks should be criticized like any organization BUT I also believe that it has done unbelievably great work in publicizing and raising awareness of the realities of autism disorders from the various walks, entertainment industry events, and stock car racing events to the United Nations' World Autism Awareness Day.

Autism Speaks has been very active in raising funds for research and research is what has provided the foundation for gains made by autistic persons everywhere. CNN and CBC will continue to interview a few high profile, gifted autistic persons who will explain why THEY do not want to be cured of their autism. But for the millions of people around the world, and their families, who actually struggle with autism challenges, research is the only direction that offers hope for the future and hope that more effective treatments and cures will be found for the neurological disorders now referred to as autism spectrum disorders and Autism Speaks is a driving force behind much of that research. Hopefully the research sponsored by Autism Speaks will not be limited by any specific ideological perspective except that of actually helping autistic persons. Hopefully Autism Speaks will sponsor both genetic and environmental research into autism cause and cure.

For now though this "autism dad" says thank you to everyone who has helped us with our present achievements here in New Brunswick and thank you to Autism Speaks for your tremendous efforts to date and for offering hope for the future.

autism

Time To Resume The Struggle, Canada Still Needs A Real National Autism Strategy

The general election in Canada has come and gone. And Canada's National Autism Crisis remains.

Prime Minister Stephen Harper had no qualms about spending hundreds of millions of dollars on an unnecessary election. But still he can not even spend five cents on actually helping autistic children and adults in Canada. Prime Minister Stephen Harper has done nothing to help autistic children receive evidence based treatment in Canada. Nothing of substance will be done to help autistic children in Canada while Stephen Harper is Prime Minister.

There were many people who fought hard to raise the profile of autism and Canada's autism crisis during this election. I am not offering any names because I do not want to offend anyone by accidental omission. From BC to Nova Scotia the fight was waged for a real National Autism Strategy. The ultimate objective was not achieved .... this time. But the fight will continue for a real National Autism Strategy.

We know that autistic children across Canada deserve the opportunity for a better life. They deserve to receive Applied Behavioral Analysis and any other evidence based treatment that might be developed in future. They need treatment now. They do not need sham National Autism Symposiums which exclude parent advocates and provide watered down versions of what more credible American agencies like the American Academy of Pediatrics, the New York State Department of Health, the MADSEC Autism Task Force and the Office of the US Surgeon General have been telling us for many years.

We have to continue the fight for a National Autism Strategy. We have to reboot, recalibrate, recharge and resume the struggle and we have to start right now!

autism

Wesley Romey Says It Is Time for Medicare for Autism

If you listened to anti-ABA advocates like Michelle Dawson and Dr. Laurent Mottron you might erroneously think that ABA oppresses autistic children. These staunch opponents of ABA for autistic children, with little or no direct experience themselves with ABA as an autism treatment, have made representations to the Supreme Court of Canada and the Canadian Senate in a continuing campaign to prevent government funding of ABA treatment for autism in Canada.

Ms. Dawson and Dr. Mottron conduct this anti-ABA campaign despite reviews by responsible, credible agencies like the American Academy of Pediatrics, the US Surgeon General, the MADSEC (Maine) Autism Task Force, and the New York State Department of Health, all of which have confirmed that ABA, based on hundreds of studies over several decades of research, is effective at realizing persistent gains in intellect, communication and socialization skills and improved positive behavior.

Michelle Dawson is an adult diagnosed autistic who often offers her perspectives on behalf of all autistic people, including her anti-ABA biases. Unlike Ms Dawson, Wesley Romey is a 13 year old autistic boy, diagnosed as a child, who has actually received ABA treatment and advocates for Medicare coverage of autism treatment, specifically ABA, as he did compellingly at a rally Saturday in Surrey, British Columbia. As reported by Surrey Now Wesley enthralled the audience with his comments:

"We want medicare for autism and we want it now!" he cried to the crowd, and was met with a standing ovation.

...

Wesley, though, was the speaker who particularly touched the crowd. Wesley shared with the audience his success with Applied Behavioral Analysis (ABA) therapy. He urged listeners to demand the government fund autism treatment, because he is proof that it works.

"I want to say this to every Canadian out there. It's not fair that every child with autism doesn't get the same chance that I did. If you don't stand up for your children, who will?"

It is time to break the self perpetuated myth that Michelle Dawson speaks for all autistic persons in her opposition to ABA treatment for autistic children. She does not have the experience, the expertise, or any legitimate moral basis, to oppose effective, evidence based, ABA treatment for autism.

It is time the federal government stopped holding sham "national autism symposiums", with keynote speakers like anti-ABA advocate Dr. Laurent Mottron, and started acknolwedging the credible agencies like the AAP, the MADSEC Autism Task Force, the New York State Department of Health and the US Surgeon General that, based on objective reviews of hundreds of studies, confirm ABA as an effective autism treatment.

It is time the federal government read the Senate report "Pay Now or Pay Later" and started taking Canada's autism crisis seriously with1 in 150 children being diagnosed with autism.

It is time that the federal government started listening to the thousands of parents of autistic children across Canada who are fighting tooth and nail to obtain ABA treatment for their autistic children while such treatment will be most effective.

It is time, it is long past time, that the federal government stop ingoring the plight of so many autistic children and their families.

It is time, it is long past time, that all autistic children in Canada in need of ABA treatment receive such treatment in timely fashion regardless of which province their parents live in.

Take it from Wesley Romey, it is time for Medicare for Autism NOW!

autism

Autism Treatment and Autism Advocacy in Canada: God Bless America!

Canada shares a border with the United States of America and we can not escape the influence of our giant neighbor and our American cousins. We absorb American news and popular culture every time we turn on our televisions. From American Idol to CSI Miami we get it all, every day. American political decisions, from war in Iraq to border crossing security changes, can have a dramatic impact on Canadians and we often follow their politics closely. Why is Hillary staying in? Does John McCain have the support of the Republican base? For Canada's autistic children, and their families who seek effective autism treatment for them, the United States and credible America autism authorities, have also had a huge influence. They have filled a vacuum by providing credible, well researched knowledge and information about the effectiveness of autism treatments.

The American Academy of Pediatrics, the Maine Autism Task Force, the Office of the US Surgeon General, and state authorities in New York and California, have all played critically important roles in educating Canadian parents about the scientific, evidentiary basis in support of the efficacy of autism treatments particularly ABA. The input of these US authorities has helped many Canadian parents and autism advocates counter the often lacking and misleading information provided to them by Canadian bureaucrats and the anti-ABA biases of some influential members of the Montreal scientific community.

With such credible sources providing reliable, substantiated, information parents and autism advocates in Canada have had the tools we needed to help educate public decision makers and to obtain evidence based, effective ABA intervention for our autistic children. A great deal remains to be done to provide effective help for autistic children, in Saskatchewan, Ontario, Nova Scotia, in every province and territory in Canada, but we do have the tools to help us, courtesy of our American neighbors. With the guidance they have provided, and with our own will and determination, we can succeed in our struggle to help our autistic children.

YES WE CAN!

autism

RDI Is NOT an Evidence Based Intervention

In New Brunswick several years ago there was little in the way of autism specific services. An interdepartmental committee comprised of representatives of the Departments of Family and Community Services (Now called Social Development), Education and Health, the "IDC", some autism "community" representatives and some professionals met for 18 months before issuing a report which stated that obvious fact. The failure of the IDC Committee, publicly at least, to discuss the need for autism treatments and to identify treatments that should be offered to autistic children in New Brunswick, is what prompted me to become publicly involved in autism advocacy in New Brunswick. One positive development that came out of the IDC review though was a commitment by the New Brunswick government to evidence based treatments.

That commitment to evidence based interventions is of critical importance for New Brunswick's autistic children and youth and has been largely honored since then by the Province of New Brunswick. There is, however, despite the existence of a high quality autism intervention training program at UNB, persistent pressure from some pockets, particularly in the Saint John and St. Andrews areas, to employ non-evidence based interventions with autistic pre-schoolers and students. In Saint John in particular, the "anything but ABA" sentiments of some influential people in the autism "community" have resulted in negative and inaccurate perceptions of ABA amongst some parents busy with the demands of child raising, dealing with their children's autism and, like all of us, struggling to get by. At the same time the "anything but ABA" group tends to promote any intervention with a nice sounding name that looks fun on its face, anything as long as it is not ABA.

The intervention which is currently in vogue amongst New Brunswick's "anything but ABA" lobby is RDI. RDI sounds so nice - Relationship Development Intervention. After all how can one possibly be against "Relationship Development"? And it is an "Intervention"! It sounds so professional it must be evidence based right? Well no, not really.

One of the leading reviews of the evidence basis of the effectiveness of autism interventions is the MADSEC Autism Task Force Report which reviewed the professional literature in 1999-2000 and concluded at pages 60-61:

Based upon a thorough examination of numerous methodologies considered as interventions
for children with autism, the MADSEC Autism Task Force has characterized the interventions
reviewed as follows:

• Substantiated as effective, based upon the scope and quality of research:
Applied behavior analysis. In addition, applied behavior analysis’ evaluative procedures are effective not only with behaviorally-based interventions, but also for the systematic
evaluation of the efficacy of any intervention intended to affect individual learning and
behavior. ABA’s emphasis on functional assessment and positive behavioral support will
help meet heightened standards of IDEA ‘97. Its emphasis on measurable goals and reliable
data collection will substantiate the child’s progress in the event of due process.

• Shows promise, but is not yet objectively substantiated as effective for individuals with autism using controlled studies and subject to the rigors of good science:
Auditory Integration Training, The Miller Method, Sensory Integration, and TEACCH.

• Repeatedly subjected to the rigors of science, which leads numerous researchers to conclude the intervention is not effective, may be harmful, or may lead to unintended consequences:
Facilitated Communication.

• Not scientifically evaluated:
Greenspan’s DIR/”Floor Time,” Son-Rise.

There is no mention of RDI in the 1999-2000 MADSEC review but RDI has emerged more prominently since then in autism workshops offered in New Brunswick and elsewhere and there has been another important and more recent review of the scientific studies of the effectiveness of autism interventions - the American Academy of Pediatrics report Management of Children With Autism Spectrum Disorders published online October 29, 2007. The AAP concluded, at page 1165m with respect to the evidence basis of RDI that:

RDI focuses on activities that elicit interactive behaviors with the goal of engaging the child in a social relationship so that he or she discovers the value of positive interpersonal activity and becomes more motivated to learn the skills necessary to sustain these relationships.56 Some reviewers have praised the face validity of this model, which targets the core impairment
in social reciprocity. However, the evidence of efficacy of RDI is anecdotal; published empirical scientific research is lacking at this time.

(Bold highlighting added for emphasis -HLD)

If a reader wants to understand how weak the evidence in support of RDI effectiveness is, as summarized by the AAP above, they can compare it to the AAP summary, at page 1164, of the evidence in support of effectiveness of ABA:

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

When the New Brunswick government committed to evidence based approaches to treating and educating autistic children it adopted a very sound policy which has helped many autistic children. Even in Saint John where the "anything but ABA" sentiment has been strongest, autistic children receive evidence based intervention at the Stepping Stones autism agency. But why is it important to provide evidence based interventions?

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.

The choice of autism interventions offered by New Brunswick autism agencies should be determined by the evidence basis in support of their effectiveness. Failure to provide evidence based effective autism interventions may compromise the outcome for children with autism disorders in New Brunswick.

Autistic children deserve evidence based intervention.

At this time RDI does not meet that standard.

autism

Canada's Autism Disgrace

What is Canada's National Autism Strategy? The answer is simple; we don't have one. And as long as Stephen Harper's Reform-Alliance-Conservative government rules Canada with an iron fist we will not have a National Autism Strategy. My friends of Conservative background in Canada may not like it but that is the hard brutal truth. Canada will not have a real National Autism Strategy as long as Stephen Harper is Prime Minister of Canada.

We certainly had the beginnings of a National Autism Strategy with the passing of the Andy Scott-Peter Stoffer motion in the House of Commons. And MP Shawn Murphy fought the good fight with his private member's initiative; defeated in the House of Commons by the alliance between the Harper Conservatives and the separatist Bloc Quebecois. Senator Jim Munson has continued his valiant efforts to keep the need to address Canada's national autism crisis alive in the media but even those efforts are becoming more challenging as the Harper-Clement team simply ignores these initiatives, ignores the needs of autistic children and adults in Canada, and proves day in and day out that they don't give a damn about the fate of autistic Canadians.

The National Autism Strategy of Prime Minister Harper really amounted to nothing but a mediocre web site and a promise of a National Autism Symposium. The National Autism Symposium was postponed when it became clear that real autism advocates, parents fighting for their autistic children, wanted to attend the symposium. A second symposium was scheduled for November 8 and 9 in Toronto. The invitation process was itself secretive, parents were largely unrepresented and any outspoken advocates were intentionally excluded from the Symposium.

The lists of speakers and symposium themes were never made public. The list of Harper government, hand picked delegates, to the symposium was never made public although it is a good bet that anti-ABA activists like Michelle Dawson and Laurent Mottron would have been invited. The Quirks and Quarks duo rarely miss an opportunity to promote their fringe anti-ABA views, contrary to hundreds of studies over 5 decades and numerous reviews of those studies by organizations such as the US Office of the Surgeon General and the American Academy of Pediatrics, that ABA is a scientifically supported, evidence based, effective treatment for autism. Their long held, closed minded views, so at odds with mainstream professional opinion, come in handy when needed by a government seeking excuses to camouflage their do nothing approach to addressing Canada's National Crisis. Just a guess, but I am betting that the Harper team was quite happy to invite Mottron and Dawson to the invisible, forgotten, National Autism Symposium.

The Autism Symposium went ahead on November 8 and 9 in Toronto and Canadians STILL don't know a thing about what was said; or what conclusions, if any, were reached. It is likely though that the Harper spin doctors will ultimately issue a summary indicating that there is lack of agreement on issues on the effectiveness of any one intervention in treating autism. The results of hundreds of studies over five decades of research, the reviews by the American Academy of Pediatrics, the Office of the US Surgeon General, the MADSEC Administrators, the New York and California state agencies, the Association for Science in Autism Treatment; all will be ignored.

The views of a few fringe anti-ABA activists will be used to prop up a cynical do nothing Harper autism policy. And Canada's National Autism Strategy will remain as nothing more than what it now is - Canada's Autism Disgrace.

autism

Evidence Based Autism Interventions

The expression "evidence based" is often encountered in discussion of autism treatments or interventions. Parents, government officials, professionals and researchers will use the expression when discussing the effectiveness of various interventions in treating or curing autism. A well known article in the Journal of the Australian Medical Association, linked on the sidebar of this blog site, is entitled "Autistic Children Deserve Evidence Based Intervention". But what does the expression "evidence based" mean and which autism interventions, if any, meet the evidence based standard?

It is important for parents and political decision makers trying to determine what interventions to provide autistic persons to understand the concept of "evidence based" interventions. There have been many quack autism interventions offered both by self promoters and wishful thinkers. Such interventions waste valuable development time of autistic children, waste family and government funds, and in some cases, actually cause direct harm. Unfortunately there have also been those who are opposed to curing or treating autistic persons, those who wish to promote alternative interventions, or who wish to avoid expending public resources to provide treatment, who attack Applied Behavior Analysis (ABA) despite the quality and quantity of research supporting the efficacy of ABA as a health and education intervention for autistic children.

CAIRN, the Canadian Autism Intervention Network, defines "evidence based":

By evidence-based, we mean the best available information based on scientifically rigorous research that produces consistent findings no matter how many times the study is repeated.

CAIRN also notes that there are substantial differences in the quality of evidence. It lists on its web site the characteristics of studies that provide high quality evidence.


Systematic reviews
A systematic review uses a clear and systematic method of finding and appraising relevant, high quality research studies whose combined results are used to answer a pre-determined question about treatment.

The strength of the systematic review is in its ability to combine data from studies of different populations in different settings to show if a treatment is widely applicable. By pooling data from patients in a number of studies, thus increasing the sample size, a systematic review can increase the reliability of the findings, showing whether a treatment actually works or may be useless or even harmful.

Randomized controlled trials (RCTs)
In RCTs, research subjects are randomly placed in one of two groups. One group receives the intervention that the study has been designed to measure; the other group (known as the control group) does not. The control group may receive a placebo, no treatment, or another therapy. Study participants (and ideally, the researchers) do not know to which group they have been assigned.

RCTs are considered the second strongest level of evidence for the effectiveness of a treatment. The strength of the RCT is that it helps ensure that the two groups under study do not have any important differences between them that could influence whether or not the treatment they receive works.

Controlled clinical trials (CCTs)
In a controlled clinical trial, one group receives a therapy and the other (control group) does not. As in RCTs, the control group may receive a placebo, no treatment, or another therapy. Unlike RCTs, however, the participants are not randomly assigned to each group.

With some populations, or in some situations, it is not possible to randomly assign participants to one group or another. CCTs still use a comparison group and efforts are made to ensure that the two groups do not have serious differences between them that could influence the results of the study.

Multiple and single case studies
In multiple and single case studies, subjects are tested to establish a baseline. They are then given an intervention, after which they are re-tested to determine what change, if any, has occurred.

Sometimes, especially when there is great variability in a condition, or small numbers of people with a condition, it is not possible to conduct research with two groups. In multiple and single case studies, the participants are used as their own comparison when they are given alternating treatments, or a treatment and then no treatment. Although not providing the same strength of evidence as an RCT or CCT, when done rigorously, these studies can yield valuable information about treatments.

In its February 2000 (Rev.) Autism Task Force Report the Maine Administrators of Services for Children with Disabilities (MADSEC) reported the results of its thorough review of the professional literature on educational interventions for autism. The MADSEC Task Force also interviewed leading practicioners of various autism interventions. It concluded that only one intervention met the standard of being an evidence based effective autism intervention - ABA.

• Substantiated as effective based upon the scope and quality of research:
Applied behavior analysis. In addition, applied behavior analysis’ evaluative procedures are effective not only with behaviorally-based interventions, but also for the systematic evaluation of the efficacy of any intervention intended to affect individual learning and behavior. ABA’s emphasis on functional assessment and positive behavioral support will help meet heightened standards of IDEA ‘97. Its emphasis on measurable goals and reliable data collection will substantiate the child’s progress in the event of due process.


......

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. Other major contributions of ABA to the education and treatment of individuals with autism include:

• a large number of empirically-based systematic instruction methods that lead to the
acquisition of skills, and to the decrease/elimination of aberrant behaviors;
• a technology for systematically evaluating the efficacy of interventions intended to affect individual learning and behavior; and
• substantial cost/benefit.
Over 30 years of rigorous research and peer review of applied behavior analysis’ effectiveness for individuals with autism demonstrate ABA has been objectively substantiated as effective based upon the scope and quality of science.

Since the publication of the MADSEC Autism Task Force Report there have been more studies confirming ABA as the most effective autism intervention. In "A comparison of intensive behavior analytic and eclectic treatments for young children with autism" published in Research in Developmental Disabilities, 26, (2005), pp. 359-383, the authors, Jane S. Howard, Coleen R. Sparkman, Howard G. Cohen, Gina Green, Harold Stanislaw reported the results of a non randomized comparison trial with three intervention groups of children with autism spectrum disorders. 29 children received one-on-one intensive behavioral therapy for 25 to 40 hours per week (IBT group); 16 received eclectic therapy (multiple treatment methods) with a teacher to student ratio of 1:1 or 1:2 for 30 hours per week (AP group); and 16 received a non-intensive, eclectic, small group, public early intervention program for 15 hours per week (GP group.) The study's authors reported that 14 months after initiation of the interventions, the intensive behavioral therapy group scored significantly higher on all measures, with the exception of motor skills, where there was no difference among groups.

Alan Harchik, senior Vice President with the May Institute, has written an excellent article on the topic of evidence based interventions. Mr. Harchik describes evidence based standards and cautions against the use of the many treatments and interventions for autism that do not meet that standard including sensory integration, facilitated communication, auditory integration, chelation and hyperbaric oxygen treatments.

The term evidence-based practice is frequently used in the fields of science and medicine. It refers to procedures that have been tested using scientific research methods and shown to be most likely to produce positive results. This means that objective studies have been conducted using reliable data collection methods, consistent implementation of the treatments and the careful control of the research conditions.

The research findings are then published in professional journals after review by a panel of experts in the field.

Mr. Harchik, like the MADSEC Autism Task Force Report, concludes that ABA is the intervention with the most evidence supporting its effectiveness.

"For children with autism, the procedures that have the most evidence supporting their effectiveness are those that use applied behavior analysis. .... applied behavior analysis methods include an assessment of the factors that are impeding learning or maintaining behavior problems, using positive rewards, teaching in small steps, using prompts and guidance, and collecting data to monitor progress. "

The studies and expertise which provide evidence of the efficacy of ABA in autism intervention have not persuaded some who oppose the use of ABA interventions with autistic persons. Some will continue to insist on an unattainable standard being met before they will acknowledge the efficacy of ABA. For others though, for parents, professionals and government decision makers seeking to help autistic children now ABA, their only agenda is to find out what works, what really works, based on the best available evidence. To date, ABA is the only intervention for which claims of efficacy meet the high quality evidence based standard. That is why parents and sincere autism advocates try to obtain passage of legislation in Canada and the United States to ensure the availability of ABA treatment for autistic children.