Autism leader helps UNB remain at forefront of autism intervention training

The University of New Brunswick has engaged a renowned expert to examine best practices in autism treatment.

Dr. David Celiberti is president of the Association for Science and Autism Treatment. His report, commissioned by UNB’s College of Extended Learning (CEL), examines program quality indicators already in place in other jurisdictions. The findings will be used to provide quality assurance for UNB’s program and to help UNB remain a leader with its Autism Intervention Training program.

“At UNB’s College of Extended Learning, we have great programs in place,” said CEL Executive Director Lloyd Henderson. “The methodology taught in our program is an Established Treatment as per National Autism Centre’s (NAC) standards.”

The NAC published a National Standards Report which classifies autism intervention treatments in a range from Established (known to be effective) and Emerging (some evidence of effectiveness), to Un-established (no sound evidence of effectiveness) and Ineffective (having no beneficial effects).

“We want to continue to lead in this area by taking a global approach, examining best practices, and making sure we continuously improve to offer the best intervention training possible. We monitor emerging treatments and will incorporate them into our programs if and when they are deemed established,” said Henderson.

“Autism treatment providers and program administrators should be required to report and justify why they are bypassing established treatment,” Celiberti said, in his report. “Parents should be educated and fully informed about which aspects of their child’s treatment are comprised of established treatment and which are not.”

The findings in the report will be used to establish a protocol for the CEL’s training program. It will also be made available to those involved in the administration and support of autism programs across the province and throughout Atlantic Canada.

“In light of the overwhelming body of growing intervention methods that parents and professionals are presented with on a daily basis, UNB’s intentions in undertaking this research project were to identify evidence-based proof of the support methods being used to treat children with autism,” Henderson said. “Thanks to Dr. Celiberti, we now have the information we need and are examining our programs to see if there are areas we can continue to improve.”

For more information on UNB’s program, or to read the report, visit: www.unb.ca/cel/intervention/index.html

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

God Bless America!

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Autism Interventions: New York Times, Once Again, Pushes Non Evidence Based Floortime And Ignores Evidence Based ABA

The New York Times is at it again ... pushing Floortime as an autism intervention ... without mentioning the lack of scientific, empirical evidence in support of its effectiveness. In A Child Psychiatrist Talks About Autism the NYT features a column by Dr. Joshua D. Sparrow which promotes Floortime as an intervention for autistic children and encourages parents of autistic children to consider Floortime as an intervention for their children. (And of course, as usual with the NYT there is no mention of the solid base of evidence in support of ABA as an autism intervention):

"One promising treatment for such children is Floortime, a developmental, individualized and relational approach.

After a careful assessment of the child’s unique profile, therapists and parents using the Floortime approach work together to help the child learn to handle sensory stimulation while gradually interacting in more complex and rewarding ways. The goal is to help these children engage in meaningful relationships, expanding their capacity for communication, understanding and complex, abstract thought. One of the keys is to find the child’s motivation, and to use it as fuel for this work. Another is to make the work rewarding by making it fun and pleasurable for child, parent and therapist. But it is hard and time-consuming work, and families of children with autism spectrum disorders deserve all the support we can possibly give them. Experience has shown that children with autism who are given the support they need are able to expand their abilities to relate, to learn and to communicate, especially with their loved ones.

...


For more on autism spectrum disorders and Floortime, see the International Council on Learning and Developmental Disorders Web site.


Among the many helpful and hopeful books on autism spectrum disorders are those by the late child psychiatrist Stanley Greenspan and the psychologist Serena Weider, including “Engaging Autism: Using the Floortime Approach to Help Children Relate, Communicate and Think,” and a new one to be published in April by the pediatrician Ricki Robinson, called “Autism Solutions: How to Create a Healthy and Meaningful Life for Your Child.”

The NYT presents this latest Floortime promotional vehicle without mentioning the limited evidence in support of its effectiveness as reviewed by the AAP and the Association for Science in Autism Treatment.

The picture above is from the AAP Publications Retired and Reaffirmed policy page and indicates that in September 2010 the American Academy of Pediatrics Reaffirmed the Clinical Report: Management of Children with Autism Spectrum Disorders. Pediatrics 2007. The 2007 Report described the lack of empirical, scientifc evidence in support of the efficacy of DIR/Floortime as an intervention for autism spectrum disorders:

"The DIR approach focuses on (1) “floor-time” play sessions and other strategies that are purported to enhance relationships and emotional and social interactions to facilitate emotional and cognitive growth and development and (2) therapies to remediate “biologically based processing capacities,” such as auditory processing and language, motor planning and sequencing, sensory modulation, and visual-spatial processing. Published evidence of the efficacy of the DIR model is limited to an unblinded review of case records (with significant methodologic flaws, including inadequate documentation of the intervention, comparison to a suboptimal control group, and lack of documentation of treatment integrity and how outcomes were assessed by informal procedures55 ) and a descriptive follow-up study of a small subset (8%) of the original group of patients.59" 

(page 1165)

The following information is currently found on the ASAT web site and indicates that Floortime is plausible but essentially untested.

Association for Science in Autism Treatment


Developmentally-based Individual-difference Relationship-based intervention (DIR)/Floor Time


...

Research Summary: DIR is widely considered to be a plausible intervention approach (i.e., one that could be effective), but it has not been evaluated in peer-reviewed studies with strong experimental designs (National Research Council, 2001). An uncontrolled study reported favorable outcomes (Solomon et al., 2007).

Recommendations: An important area for future research is to evaluate DIR in studies with strong experimental designs. Professionals should present DIR as untested and encourage families who are considering this intervention to evaluate it carefully.

It isn't clear to me why the NYT pushes Floortime, a non evidence based autism intevention, and ignores ABA,  the most evidence based intervention for autism, as reviewed for several decades by authorities from the US Surgeon General, to state agencies in Maine, New York and California to the Association for Science in Autism Treatment to the American Academy of Pediatrics. I have to assume that the personal biases and prejudices of senior health editors at the New York Times lie behind this persistent attempt to promote non evidence based autism interventions and ignore or put a negative spin on ABA.  I can think of no other reason, rational or not, for the NYT's  misguided autism intervention reporting.

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An Important Autism Resource: Interventions for Autism Spectrum Disorders STATE OF THE EVIDENCE October 2009

I encourage anyone interested in autism disorders, particularly parents of children newly diagnosed with an autism disorder, to read Interventions for Autism Spectrum Disorders STATE OF THE EVIDENCE October 2009.  It is a thorough,  comprehensive review, as the title indicates, of the State of the Evidence relating to autism interventions published by the  State of Maine Departments of Health and Human Services and  Department of Education. 

Unlike many reviews of autism interventions it provides a detailed assessment and "grading"  of the  evidence in support of the various autism interventions.  STATE OF THE EVIDENCE in many ways is an update and further refinement of another effort by our good neighbors in Maine  the  excellent Report of the MADSEC Autism Task Force (2000).  

I have always believed that an evidence based approach to assessing the efficiency of autism interventions is of fundamental importance to finding the best ways to help my son Conor grow and overcome to the fullest possible extent the deficits that accompany his severe autistic disorder.  The MADSEC report pointed clearly to ABA as the most evidence based autism intervention.  While Conor never had the opportunity to benefit from Intensive Early Behavior Intervention he has benefited from ABA. 

I do not ask any other parent to take my word on what benefits ABA might or might not be able to bring to their child with autism.  I do encourage them to read credible sources about autism interventions. In the past the MADSEC Autism Task Force was the best report that I read providing a clear, well organized summary and assessment of the evidence in support of autism interventions.  The STATE OF THE EVIDENCE is an important new resource that follows the same helpful pattern.

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More Weak Autism Intervention Journalism from the New York Times

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


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

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

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

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

autism

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

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

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

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

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

autism

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Saskatchewan Still Canada's Autism Wasteland

More than two years since I described Saskatchewan as Canada's Autism Wasteland the government of Saskatchewan is still dithering, and delaying instead of putting a quality system of autism services in place to help that province's autistic children.

In all fairness to Saskatchewan's political and public service elite they may not know much about autism disorders, or the importance of timely early intervention in helping autistic children live fuller, richer lives. Their failure to provide an autism intervention system with quality and integrity for autistic children across Saskatchwan appears to indicate a lack of any real understanding about autism disorders or the importance of early intervention in helping autistic children make real gains that will help them live fuller lives.

The Leader-Post reports that parents of autistic children rallied at the Saskatchewan legislature Thursday to protest lack of funding and provision of properly trained autism support workers. Tim Verklan, president of SaskFeat, Saskatchewan Families for Effective Autism Treatment, commented on the lack of properly trained help:

"We get warm bodies — with good intentions, but warm bodies — working with our children and they just fall farther behind.”

Apparently the Saskatchewan government has a plan in place but does not understand the urgency, the time sensitive element of providing intervention to autistic children:

"NDP health critic Judy Junor said parents aren’t getting access to adequate treatment.

“It’s very time sensitive. These children can really progress so quickly with intensive therapy that meets their particular needs,” Junor said outside the assembly.

Parent Arden Fiala, whose daughter has Asperger syndrome, said she wants government to know there’s an urgency to the call for a strategy and for “individualized” funding in the interim that is not income-tested.

“The start of the action plan of the (Premier Brad) Wall government is just that — a start. It is not addressing the immediate and critical needs on the front lines and we’ve yet to see the benefits,” Fiala said."

Timid, incremental, baby steps will preclude many autistic children in Saskatchewan from obtaining the help they need.

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CNN Provides Some Autism and ABA Reality

I have been a frequent critic of CNN's coverage of autism disorders, particularly what I saw as Dr. Gupta's fawning over, and multiple interviews with, Amanda Baggs, a person whose autism disorder characteristics many parents do not recognize in their own autistic children. I have to admit though that with Teen's family transformed after autism intervention CNN has shown some of the real challenges, tantrum behavior, self injury, family disruption, that can result from autistic disorders.

Just as important CNN has also covered an intervention by an Applied Behavior Analysis therapist. The story of how ABA helped the Bilson family and their autistic daughter should be must reading for ill informed opponents of ABA. Hopefully Dr. Gernsbacher, Dr. Mottron and their mentor Michelle Dawson will visit the site and try to approach it with an open mind. Their ideological opposition to ABA for autistic children has not been helpful. Hopefully they are still capable of learning.

Full marks to CNN for this autism reporting.

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Behavior Analysts Rebut ABA Myths

Most of the criticisms of ABA as an autism intervention come from sources with little or no actual knowledge of, or experience with, ABA. Myths about suppression of an autistic child's personality, repetition and inducement of robot like behavior abound.

I have posted comments and pictures on this site of my son Conor waiting in anticipation for his ABA therapist to arrive. I have seen ABA help Conor learn skills, reduce problem behaviors and expand his ability to communicate. But as a mere parent my actual knowledge of ABA and its positive influence on my son's life is of no weight to the anti-cure, anti-treatment, anti-ABA ideologues who attack ABA despite their own lack of actual knowledge or experience with the intervention and despite the hundreds of studies and many credible professional reviews of those studies speaking to the effectiveness of ABA as an autism intervention.

In Autistic children show different behavior patterns Board Certified Behavior Analysts Dan Mruzek and Dennis Mozing rebut some of the myths and misunderstandings about ABA as an autism intervention. There is nothing particularly new about what Mruzek and Mozing have to say. What they have to offer is actual knowledge of, and experience with, autism as an intervention.

Unlke some anti-ABA ideologues who accuse behaviourists of misbehaving and propogate unfounded, negative myths about ABA Mruzek and Mozing have actual experience with ABA. They have more than empty, heated rhetoric to offer - they have, as Board Certified Behavior Analysts talked the talk and walked the walk. Unlike most anti-ABA critics they actually know what they are talking about. They offer their comments on an article which perpetuated some of the ABA misconceptions:

Unfortunately, the essay perpetuated some all-too-common misconceptions about applied behavior analysis, particularly that it is "rooted in repetition" and focuses mainly on making "children with autism ... indistinguishable from their peers." In fact, the concept is a very flexible approach, with teaching methods and goals carefully tailored to the needs of each child.

And they speak to ABA's effectiveness as a means of helping autistic children:

The first applied behavior analysis study specifically targeting autism was published in 1964. Since then, it has become the most-studied intervention for children with autism — the only one recommended by the New York State Department of Health. It includes a wide array of teaching methods grounded in scientifically derived principles of learning, especially those related to the powerful effect of positive reinforcement on behavior change.

Applied behavior analysis can help people with autism develop new skills (in academics, play, communication, social interaction) and support those who engage in challenging behaviors (severe tantrums, refusing food, injuring themselves).

Intensive, early intervention for young children with autism can be especially effective, although outcomes vary among individuals. A study under way at UR is investigating factors possibly implicated in these variable outcomes.

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An Autism Suggestion For 2008's New Autism Parents - Do Not Waste Time

TO PARENTS OF CHILDREN DIAGNOSED WITH AUTISM IN 2008 DO NOT WASTE TIME

Amongst the many events that will occur in 2008 is the certainty that many children will receive an autism disorder diagnosis. Many parents of these children will have their hands full coping with the demands of daily life and trying to understand what autism is all about. If a child receives a diagnosis at an early age, between 1-2 or even before school age, it is likely because the parent already understands that their child's behavior, or lack of development, is not a culture or way of life, not just a different form of wiring, as some neurodiversity advocates like to describe it in trivializing autism. It is that parental observation and concern which will usually have led to an autism disorder diagnosis. Parents with children newly diagnosed with autism disorder should waste no time in seeking effective help.

Autism is a serious neurological disorder that will seriously impair and restrict the lives of many who are afflicted with the disorder. At present there is no widely accepted, evidence based cure, BUT there is a treatment that is effective in significantly improving the child's potential on many fronts behavior, intellect, social skills and communication are all deficits which can be improved in an autistic child with early, effective, evidence based, intervention. While there are several variations in practice today the most effective, evidence supported, intervention for autistic children is Applied Behavior Analysis. The American Academy of Pediatrics in Management of Children With Autism Spectrum Disorders, October 29, 2007 stated with regard to ABA:

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 methodology 21,25,27,28 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

Highly structured comprehensive early intervention programs for children with ASDs, such as the Young Autism Project developed by Lovaas35,41 at the University of California Los Angeles, rely heavily on discrete trial training (DTT) methodology, but this is only one of
many techniques used within the realm of ABA. DTT methods are useful in establishing learning readiness by teaching foundation skills such as attention, compliance, imitation, and discrimination learning, as well as a variety of other skills. However, DTT has been criticized
because of problems with generalization of learned behaviors to spontaneous use in natural environments and because the highly structured teaching environment is not representative of natural adult-child interactions. Traditional ABA techniques have been modified to address
these issues. Naturalistic behavioral interventions, such as incidental teaching and natural language paradigm/pivotal response training, may enhance generalization of skills.13

Functional behavior analysis, or functional assessment, is an important aspect of behaviorally based treatment of unwanted behaviors. Most problem behaviors serve an adaptive function of some type and are reinforced by their consequences, such as attainment of (1) adult attention, (2) a desired object, activity, or sensation, or (3) escape from an undesired situation or demand. Functional assessment is a rigorous, empirically based method of gathering information that can be used to maximize the effectiveness and efficiency of behavioral
support interventions.42 It includes formulating a clear description of the problem behavior (including frequency and intensity); identifying the antecedents, consequences, and other environmental factors that maintain the behavior; developing hypotheses that specify
the motivating function of the behavior; and collecting direct observational data to test the hypothesis. Functional analysis also is useful in identifying antecedents and consequences that are associated with increased frequency of desirable behaviors so that they can be used
to evoke new adaptive behaviors.

What does all the above mean? It means that your autistic child's abilities and understanding can be enhanced most substantially with early, intensive, behavioral intervention. Do not waste time. I did not have access to intensive ABA intervention for my son when he was first diagnosed at the age of two. There were few trained personnel available and their time was divided amongst many autistic children. Ultimately ABA has been obtained for Conor and for the past few years he has received ABA based instruction in a modified learning environment within our public schools.

As the parent of a child with severe Autism Disorder who has actual experience with ABA and the benefits it has brought to my son I can tell you, parent to parent, that it has been of immense value to him even though he did not receive ABA intensively at an early age. He was toilet trained using ABA principles years before entering the school system. With ABA Conor has learned significant oral communication skills even though he is still limited in that area. Although he reads at a level well below his chronological age he does read (12 years old, reading Dr. Seuss). Behavioral issues still surface including biting and aggression against family members as I have described on this site but we have a way to deal with it and minimize it.

Conor is also himself a witness against the nonsense that ABA oppresses the personality and human rights of autistic persons who receive ABA intervention. Conor looks forward to visits from his ABA therapist at home, asking for her an hour before she arrives, pulling a chair up to the living room window looking out and waiting for her to arrive. He also asks to go to school where he receives ABA based instruction. Conor is happy with the structured learning that he receives. And it is not all academic in nature. He is taught life skills as well, including self dressing, helping in the kitchen etc. Conor is happy receiving ABA.

That is my evidence as Conor's father, the father of a severely autistic boy with profound developmental delays, a father who is involved with my son every day and who has been actively involved in his treatment and education. I have no doubt that Conor would be thriving even more if he had received ABA intensively from age 2 or earlier.

If you are the parent of a newly diagnosed child DO NOT WASTE TIME. Seek confirmation from your local professionals that ABA is suitable for your child (you will likely be told yes after the AAP report) and get him or her involved with ABA as early and as intensively as possible.

autism

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Autism Wishes 2008

My autism wish list for 2008:

1. That all persons with autism, their friends and family members will have the best possible year in 2008 with access to effective evidence based intervention, autism trained teacher aides and teachers and appropriate residential care and housing.

2. That a cure will be found for autism, a cure which is capable of reversing, even amongst older autistic children and adults, some of the most severe aspects of autism disorder, a serious neurological disorder.

3. That the stigmatization of intellectually impaired autistic persons by society at large, by prominent media organizations, by some very intelligent and higher functioning autistic persons, and by some 'autism hub' bloggers will cease.

4. That the few who disagree with my views on autism see the error of their ways. :-)

Happy New Year to All!

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AutismPro - "Somewhat" Evidence Based Internet Autism Intervention or Not Evidence Based At All?

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:

Beware the magic bullet solution. Beware the cheap and easy fix.

Whenever a crisis arises anywhere there always seems to be someone willing to sell a magic solution to the problem. Autism disorder diagnoses are soaring, the costs of treating these serious neurological disorders are soaring, the costs of not treating autism disorders, in terms of increased state funded adult autism care are also soaring. A solution must be found so what is the solution?

For years parents and professionals have been urging government and educational service providers to implement evidence based approaches to treating and educating autistic children. The ASD's are serious neurological disorders that require a serious evidence based approach. And time is important in the developmental life span of children to ensure the maximum results.

In Children With Autism Deserve Evidence Based Interventions, The Evidence for Behavioural Therapy, Jennifer J Couper, Head, Endocrinology and Diabetes Centre Women's and Children's Hospital, North Adelaide, and University of Adelaide, SA and Amanda J Sampson, Ultrasonologist, Royal Women’s Hospital, Carlton, VIC reviewed the professional literature on autism interventions and discussed some of the moral issues relevant to provision of evidence based interventions for children with autism:

"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."

In New Brunswick the Inter Departmental Committee on Autism Services met for 18 months before concluding that there were precious few autism specific services in New Brunswick. One of the strengths of the IDC Report finally issued in November 2001 though was an emphasis on provision of evidence based interventions for autistic children. Now, however, the New Brunswick Department of Education, without consulting the Autism Society New Brunswick, is engaged in what it describes as a pilot project involving AutismPro, a non-evidence based autism intervention tool created in part in New Brunswick and advocated for strenuously by senior levels of the New Brunswick Department of Education. The establishment of this pilot project, especially when established in secrecy by Department officials, represents a significant departure from the commitment to evidence based interventions made in the 2001 IDC Report.

In fact the entire world is being tempted to abandon the evidence based approach to autism disorder interventions and instead is being sold a much different approach - the "somewhat" evidence based approach of AutismPro, a commercial, untested, unstudied, unverified, product sold by Virtual Experts Clinic Inc. Unfortunately civil servants looking for cheap solutions, especially senior education bureaucrats looking to maintain control over their department costs and agendas, are eager to adopt this product which is advertised as based on "evidence based interventions" a somewhat questionable claim.

VEC Inc., the owner of AutismPro, is a master of SelfPromotion. VEC Inc's self congratulatory PR releases on the business newswire services ensure that the world is led to believe that AutismPro is a can't miss product, the magic bullet solution to the world's growing autism crisis. What none of the AutismPro SelfPromotion information does is indicate how the product in any way meets an evidence based standard as an effective autism intervention. Quite the contrary, the VEC Inc's own public statements suggest that AutismPro is NOT an evidence based effective autism intervention; or at best might be properly described as "somewhat" evidence based.

Evidence Based Autism Interventions

On the AutismPro website under AutismPro Research AutismPro Uses Evidence-Based Methods it states that the AutismPro product offers three "evidence based" methods of autism intervention: Behavioral,Developmental,Social Behavior. (It would be interesting to know if the symbols eg. heart for social, were intended to attract users to specific methods)


These groupings of methods are simply categories of intervention types, not actual interventions. Many of the interventions listed under these three categories are not in fact recognized as evidence based effective interventions for autism, at least not in any of the major reviews of autism interventions conducted in the last 10 years. There have been several reviews conducted by US state and federal agencies.

In the MADSEC (Maine Administrators of Services for Children with Disabilities) Autism Task Force Report, February 2000 (Rev. Ed. ) it was concluded that:

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.

The MADSEC Autism Task Force Report Rev. Ed. was issued in 2000. Since then there have been other studies and professional review of autism interventions. Very recently, on October 29, 2007, the American Academy of Pediatrics issued its on-line review of educational interventions for autistic children Management of Children With Autism Spectrum Disorders in which it conducted a review of educational interventions for autistic children and concluded with respect to ABA that:

"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.

Other methods and interventions offered by AutismPro did not fare so well in the AAP review of the evidence basis for effectiveness as an autism intervention. Starting with the best of the rest (TEACCH) and working downward in the AAP summary the evidence of effectiveness goes from scant to non-existent:

Several reports have documented progress in children who have received TEACCH services as well as parent satisfaction and improvement in parent teaching skills, but these reports were not from controlled studies of treatment outcomes.44–49 In a controlled trial, Ozonoff and Cathcart50 found that children treated with a TEACCH-based home program for 4 months in addition to their local day treatment programs improved significantly more than children in the control group who received local day treatment services only.

Developmental Models

Developmental models are based on use of developmental theory to organize hypotheses regarding the fundamental nature of ASDs and design approaches to address the deficits. The Denver model, for example, is based largely on remediating key deficits in imitation, emotion sharing, theory of mind, and social perception by using play, interpersonal relationships, and activities to foster symbolic thought and teach the power of communication.12 This program has shifted from a center-based treatment unit to service delivery in homes and inclusive school environments. Several studies have demonstrated improvements in cognitive, motor, play, and social skills beyond what would be expected on the basis of initial developmental rates in children who are treated according to the Denver model, but controlled trials are lacking.51–54

Relationship-focused early intervention models include Greenspan and Wieder's developmental, individual-difference, relationship-based (DIR) model,55 Gutstein and Sheely's relationship-development intervention (RDI),56 and the responsive-teaching (RT) curriculum developed by Mahoney et al.57,58 The DIR approach focuses on (1) "floor-time" play sessions and other strategies that are purported to enhance relationships and emotional and social interactions to facilitate emotional and cognitive growth and development and (2) therapies to remediate "biologically based processing capacities," such as auditory processing and language, motor planning and sequencing, sensory modulation, and visual-spatial processing. Published evidence of the efficacy of the DIR model is limited to an unblinded review of case records (with significant methodologic flaws, including inadequate documentation of the intervention, comparison to a suboptimal control group, and lack of documentation of treatment integrity and how outcomes were assessed by informal procedures55) and a descriptive follow-up study of a small subset (8%) of the original group of patients.59 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. One study reported beneficial effects of RT on young children with ASDs or other developmental disabilities.58 Parents were taught to use RT strategies to encourage their children to acquire and use pivotal developmental behaviors (attention, persistence, interest, initiation, cooperation, joint attention, and affect). Children in both groups improved significantly on nonstandardized play-based measures of cognition and communication and standardized parent ratings of socioemotional functioning. Although a control group was lacking and the potential role of concurrent educational services was unclear, the improvements were beyond what the authors expected from maturational factors alone.58

The AAP Report continues with an evaluation of other interventions for which there is some evidence of efficacy as autism interventions but only ABA intervention boasts a lengthy history as an evidence based effective intervention for autism:

All treatments, including educational interventions, should be based on sound theoretical constructs, rigorous methodologies, and empirical studies of efficacy.15 Proponents of behavior analytic approaches have been the most active in using scientific methods to evaluate their work, and most studies of comprehensive treatment programs that meet minimal scientific standards involve treatment of preschoolers using behavioral approaches.16,38 However, there is still a need for additional research, including large controlled studies with randomization and assessment of treatment fidelity. Empirical scientific support for developmental models and other interventions is more limited, and well-controlled systematic studies of efficacy are needed.

The professional reviews of autism interventions indicate that only behavioral based approaches to autism intervention have a substantial empirical or evidence based of support for their efficacy. Of the behavioral interventions ABA is by far the most studied, subjected to rigorous study providing evidence of efficacy. The developmental and social categories of intervention listed on the AutismPro website do not enjoy anywhere near the same evidence basis for claims of efficacy in treating autism. As said in the AAP Report:

All treatments, including educational interventions, should be based on sound theoretical constructs, rigorous methodologies, and empirical studies of efficacy.15 Proponents of behavior analytic approaches have been the most active in using scientific methods to evaluate their work, and most studies of comprehensive treatment programs that meet minimal scientific standards involve treatment of preschoolers using behavioral approaches.16,38 However, there is still a need for additional research, including large controlled studies with randomization and assessment of treatment fidelity. Empirical scientific support for developmental models and other interventions is more limited, and well-controlled systematic studies of efficacy are needed.

AutismPro Is an Eclectic Intervention Tool

AutismPro does not actually appear to offer a specific evidence based intervention. Although it references ABA (usually as being ABA "based") in some of its press releases and on its web site it does not appear that a straightforward ABA intervention is offered. As VECInc states on its web site in You Asked About AutismPro AutismPro borrows elements from various intervention methods, which methods themselves have stronger or weaker evidence bases in support of their efficacy. By taking elements of these programs and combining them in a new eclectic mix VECInc. is essentially creating a new intervention altogether; one with no evidentiary basis for its efficacy.

Does AutismPro incorporate such therapeutic teaching methods as Applied Behavior Analysis and DIR/Floortime?

Somewhat. AutismPro integrates the fundamental components behind the continuum of well-researched behavioral, developmental, and social methods for teaching a child with autism and organizes them into clear choices, recommendations and training within the Strategy Plan section of the program.

Does AutismPro incorporate such strategies as TEACCH, PECS, and Social Stories?

Somewhat. AutismPro integrates the fundamental principles behind dozens of well-researched strategies for adapting the environment or activity for a child with autism, and organizes them into clear choices, recommendations and training within the Support Plan section of the program.

How does AutismPro help me choose a method of instruction?

AutismPro saves you time and effort by organizing the confusing and intimidating range of commonly accepted educational therapy methods in autism into a series of educated and supported choices. You choose the philosophical approach (behavioral, social and developmental) with which you feel most comfortable, and you’re free to make modifications to suit your child’s needs.

Does AutismPro introduce new methods for autism therapy?

No. The methods in AutismPro are a comprehensive integration of strategies from commonly accepted educational therapy options in autism, delivered on a new platform and organized according to a new cohesive conceptual framework. With AutismPro you get practical descriptions rather than a confusing list of strategy names, allowing you to more easily compare choices and make decisions.

Eclectic is one of those buzz words like community, inclusion, natural etc. which imply that the objects they describe are inherently good in some undefined way. Studies of eclectic approaches to educating autistic children do not support that belief. As stated in the AAP Report:

Most educational programs available to young children with ASDs are based in their communities, and often, an "eclectic" treatment approach is used, which draws on a combination of methods including applied behavior analytic methods such as DTT; structured teaching procedures; speech-language therapy, with or without picture communication or related augmentative or alternative communication strategies; SI therapy; and typical preschool activities. Three studies that compared intensive ABA programs (25–40 hours/week) to equally intensive eclectic approaches have suggested that ABA programs were significantly more effective.31,32,34 Another study that involved children with ASDs and global developmental delay/mental retardation retrospectively compared a less intensive ABA program (mean: 12 hours) to a comparably intensive eclectic approach and found statistically significant but clinically modest outcomes that favored those in the ABA group.33 Although the groups of children were similar on key dependent measures before treatment began, these studies were limited because of parent-determined rather than random assignment to treatment group.

The Medium is the Message

AutismPro is an eclectic autism intervention because it selects principles and elements of various interventions. And those interventions themselves enjoy varying degrees of evidence based supports. As a new eclectic mix it is impossible to say that AutismPro is itself an "evidence based" intervention tool. The use of the internet also raise questions about the extent to which AutismPro can accurately be described as "evidence based". Autism is a neurological disorder which often presents serious environmental issues for autistic children. A specific location, even if identical in all obvious aspects to another location, may be problematic for an autistic child. Slight environmental changes may have dramatic effects on an autistic child not always obvious to someone else.

Autism is not a motor vehicle registry or corporate affairs data bank both of which lend themselves readily to two way internet based communication of significant information. Autism is a very "environment sensitive" condition. The further removed in place and time that persons, whether actual advisors, or program writers, are from the specific environment involved, the less likely they will be able to offer reliable solutions to autism challenges. Delivery of autism interventions by internet is something in itself which is radically new. To suggest that an internet based intervention service which is promoted as revolutionary is also evidence based is illogical, inconsistent and inaccurate.

autism

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Autism's Gold Standard Intervention - A Note to Dr. Rémi Quirion

Dr. Rémi Quirion
Scientific Director
Institute of Neurosciences, Mental Health and Addiction (INMHA)
Canadian Institutes for Health Research

Dear Dr. Quirion

Re: Autism's Gold Standard Intervention and the National Autism Symposium

I am a parent of an 11 1/2 year old boy with Autism Disorder. He is profoundly autistic. By profoundly I mean that he has limited communication skills and understanding of language and does not appreciate many of the dangers presented by everyday life. He also engages, from time to time, in self injurious behavior. As a distinguished professional in Montreal neuro-research circles you may not place much weight on my assessment of my son's realities even after living with, caring for, and loving him, for 11 1/2 years. To that end let me assure you that my assessment of my son is confirmed by a Pediatric Doctor's (two in fact) and a Psychologist's assessments.

As an outspoken parent advocate on autism issues my name was rejected by your organisation as a New Brunswick community representative at the National Autism Symposium to be held on November 8 and 9. Despite that fact, I ask you to consider, and anyone of the chosen delegates to consider during this symposium, the question of whether there is a Gold Standard for autism interventions at this time. You may not understand that for parents this is a critical question. Parents of autistic children will not be spending a lot of time worrying about the next development in Montreal neuro-research circles over the next few years. We tend to focus on the well being and best interests of our children; on the best ways to enhance their development and life prospects, to make their life better for them. Parents of newly diagnosed autistic children may not understand that there is in fact a Gold Standard intervention for autism, and that time is important in obtaining that intervention for their children.

You may or may not know that several reviewing agencies over the past decade have essentially reached the conclusion that there is, despite the superficial conclusions to the contrary of some otherwise earnest professionals, a gold standard for autism intervention. From Maine to New York to California, to the office of the US Surgeon General to the advisory board of the Association for Science in Autism Treatment to a recent United Kingdom review, all such reviews consistently point to Applied Behavior Analysis as the only effective evidence based autism intervention - to date.

This past week saw two further developments. Most well known are the two reports of the American Academy of Pediatrics. One report recommended early screening for autism. The other report reviewed some interventions. This quote is taken directly from one of those AAP Reports Management of Children With Autism Spectrum Disorders

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


It will not receive the attention of the AAP Reports but the Province of New Scotia also release a report, Autism Treatment Program Getting Positive Results, this week on its ABA based EIBI program :

The interim results of an independent program evaluation conducted by IWK Health Centre Research Services and Dalhousie University indicates that after one year of Early Intensive Behavioural Intervention (EIBI)treatment, virtually all 27 children in the first phase of the program had significantly improved communication skills. According to tests and parental feedback, they also had improved problem-solving skills and reduced behavioural problems.

...

Many of the children were about a year and a half behind in language-development skills when they began EIBI treatment. On average, children gained more than a year's worth of language skills in the first 12 months of treatment.

The National Autism Symposium is designed to be conducted by professional "facilitators" which usually means that open, frank discussion will not take place, that the issues discussed and conclusions reached will be essentially determined in advance of the symposium. On the assumption though that there is still some room for actual candid discussion of research issues of real import to autistic children and their families I ask you to encourage your professional colleagues, and others in attendance, to consider these two recent reports, the numerous other credible reviews of autism intervention research and the hundreds of studies over 5 decades which clearly establish Applied Behavior Analysis as the Gold Standard intervention for autistic children.

Respectfully,

Harold L Doherty
Fredericton NB

cc. Dr. Barbara Beckett
Assistant Director, Ottawa

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