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

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Psychoanalysis Allegedly Helps Kids With Autism, No Evidence To Back Up Claim

In Psychoanalysis Helps Kids With Autism CBS quotes Susan P. Sherkow, MD, a New York City psychoanalyst who works with autistic children and their families and describes how, in her opinion, psychoanalysis helps autistic children:

"The therapist focuses on the behavior, mood, or emotion of the child and then translates it to the child and waits for a sign that the child feels understood, such as a furtive glance. And from there, the therapist enters the child's world," she explains. Sometimes this translation is putting the child's actions into words, such as saying "you are picking up a cup." "Psychoanalysis should be part of the package because unless you have a really gifted specialist, you are not going to get at the meaning of what these children are trying to convey," she says.

The article cites only Dr. Sherkow's opinion in support of its headline proposition that psychoanalysis helps kids with autism. No credible studies, no studies of any kind, are offered in support of the proposition. Fortunately Denise Mann, the author of the article, also spoke with Andy Shih, PhD, vice president of scientific affairs at Autism Speaks, who stated:

"Very little is known about effective treatments for autism. The only approach that has evidence behind it is ABA. In many cases, this approach has been helpful in allowing children to lead a healthy and more normal life."

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Autism Resources Miramichi Gets A Boost

Lila Barry accepts a cheque for $30,000 from MLA Bill Fraser. They
are joined by ARM board members Dianne Pineau and Linda Robichaud.
Photo and caption from Miramichi Leader Online Edition
© 2007 CanadaEast Interactive, Brunswick News Inc.

In Autism centre receives government funding the Miramichi Leader reports on a positive autism development in Miramichi, New Brunswick as Autism Resources Miramichi receives funding to get started. New Brunswick has seen its share of advocates of alternative non evidence based treatments for autism. Lila Barry, Dianne Pineau and Linda Robichaud at ARM will ensure that parents receive reliable information about evidence based interventions for their autistic children - and strong moral support through the tough times:

Barry and other parents of ASD children were at the office of Miramichi-Bay du Vin MLA Bill Fraser last Monday, Jan. 7 for the official funding presentation. She said the centre will especially help parents who are struggling to deal with affected children.

"As a parent you're actually trying to reach out to other parents. Parents often when they first get the diagnosis; they're always in a state of anxiety and overwhelmed with the diagnosis. They don't necessarily have anyone to turn to or don't know who to turn to once their child is diagnosed," she said.

Barry also said stress levels are very high for parents of ASD children and family separation and divorce often result. She said many parents are often desperate to get help for their children and turn to the wrong sources of information.

"It's difficult obtaining reliable, accurate information on best practices, treatment and research," she said. "So often there is some much out there on the Internet that is just garbage."

She said parents will often spend large amounts of time and money chasing worthless therapies and miracle treatments. She wants the centre to provide these parents with the right information needed to help.

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Autism Reality NB Thanks "Neurodiversity" Visitors

I want to take the opportunity today to thank the many Neurodiversity visitors that I have received on this blog site since it began 15 months ago. Neurodiversity is a very loose and somewhat fractured group or persons, largely internet commentators, who are opposed to efforts to cure or treat autism. And they have often criticized me specifically and other parent autism advocates seeking to help their autistic children.

Even within Neurodiversity groups there is a significant divide between those ND members who acknowledge that autism is in fact a disability that restricts to one extent or another the lives of persons with autism and those who feel that autism is just another natural, in some ways superior, variation of the human condition. There are arguments over whether it is appropriate to use expressions like "persons with autism" as opposed to "autistic persons". Some argue that it is inappropriate to refer to autistic persons by common sense expression like "low functioning" or "severely autistic". It is not clear how they would have us distinguish between people like my 11 year old son who has limited communication ability and limited understanding of everyday realities - and dangers - and those autistic persons, some self diagnosed, or diagnosed as adults, who write complex internet essays, testify before government bodies and court proceedings. But then their focus lies not with helping less fortunate autistic persons achieve positive gains in intellect, communication, knowledge, writing or understanding.

To the contrary, what unites all members of the "Neurodiversity" movement is their opposition to attempts to treat or cure OTHER autistic persons, including autistic children. I have capitalized OTHER for a reason. No one is forcing adult autistic persons to undergo treatment. What unites the ND ideologues is their determined opposition to any realistic effort to help other peoples' autistic children. They can dress it up any way the want but the truth is that ND ideologues oppose ABA for autistic children; other peoples' children. ABA is an evidence based intervention demonstrated by the quantity and quality of evidence over five decades of research to be effective in helping autistic children 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.

(Italicized Portion from American Academy of Pedatrics; Management of Children With Autism Spectrum Disorders, 2007)


What unites the ND group is their opposition to the only method demonstrated to produce substantial, sustained gains in IQ, language, academic performance, adaptive behavior and some measures of social behavior for autistic children. This is what ABA has been documented by decades of research to offer autistic children . This is what ND icons like Michelle Dawson and Laurent Mottron opposed before the Supreme Court of Canada and the Canadian Senate. And what would these good citizens have parents do instead of helping their autistic children realize these gains through ABA? They want us to wait another generation, literally, to see how further studies turn out comparing ABA to other interventions with little or no evidence basis of efficacy.

So WHY do I thank ND ideologues for visiting my blog site? Because when they do, when they write their "Harold Doherty says" and "Harold Doherty believes" etc. comments on their web sites they actually encourage their followers to visit this site. And if even ONE Neurodiversity believing parent visits this site, comes to learn what ABA can do for their autistic child, and is able to realize these gains for their child, then it will all be worth it. For that reason I would like to thank Michelle Dawson, Estee Klar-Wolfond, "Joseph", "Steve D", Kev Leitch and Mike Stanton. Contrary to your best efforts you might have actually helped some parents realize the truth about ABA and the benefits it can offer their children.

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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.

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UNB CEL Autism Intervention Training Program (K - 12) 2007-08

For those of us who have been advocating for, fighting for is a more accurate description, effective evidence based interventions for autistic children in New Brunswick one of the great successes has been to see the development of the UNB-CEL Autism Intervention Training Program. The UNB-CEL AIT has achieved national recognition. When Conor was diagnosed, originally with PDD-NOS, subsequently with Autism Disorder, there were almost no properly trained interventionists in the province to help. Now agencies exist in all major centers in New Brunswick to provide pre-school intervention, staffed by people who have received quality training from UNB-CEL.

First steps have also been taken to train Teacher Aides and Resource Teachers to work in our schools as Autism Support Workers and Clinical Supervisors. The UNB-CEL provides the assurances of quality and integrity in the training and testing of candidates that are not otherwise available in Atlantic Canada and that are infinitely superior to some of the shoddy, internet training "alternative solutions" proposed by those with vested, proprietary, interests in promoting cheap, quick fix "solutions" to New Brunswick's autism education crisis.

The UNB-CEL AIT is a solid step forward in helping our autistic children. This K-12 program will help those, like my son Conor, for whom the pre-school programs did not exist. Parents fought hard to establish this program and to ensure that penny wise pound foolish public decision makers understood the importance and value of this program. Ultimately two persons deserve full credit for this program. Ann Higgins of UNB-CEL who has the business and organizational savvy to put this program together year after year. And above all Professor Emeritus (Psychology)and Child Clinical Psychologist Paul McDonnell whose ideas led to the creation of the UNB-CEL Autism Intervention Training program and the individual who has educated so many parents, professionals and public servants in New Brunswick about autism and effective evidence based interventions for autism.

Autism Intervention Training Program (K - 12) 2007-08

This program is intended for those in the K-12 public school system.

The deadline for applications to CEL is June 12, 2007
Download the Application Package here (PDF format)

Program Delivery
The program is delivered through face to face teaching integrated with video conferencing, web-based training, and hands-on practicum. The guiding design principle of this blended model is to provide an instructionally sound, flexible, user-friendly teaching and learning solution.

For applicants to be considered for the program, they must be available to attend all components of the program including theory (October and November), workshops, and practicum sessions. As this is a distance program, participants must have access to a computer, the Internet, and a printer.

There will be three (3) practicum locations this year: Moncton and Fredericton for English, French site yet to be determined. Participants will be assigned to the location they request on the application where possible. Travel may be required, as seating is limited.

Resource Teachers are required to complete/attend:

* All sessions of the core theory,
* Three (3) weeks of core practicum,
* Advanced theory readings and on-line discussions,
* Two (2) weeks of advanced practicum, and
* Two (2) professional development workshops.

Teacher Assistants are required to complete:

* All sessions of the core theory,
* Three (3) weeks of core practicum, and
* One (1) professional development workshop.

Applicants will be required to provide a letter of support from their supervisor and a reference letter from a person familiar with their work with children. Applicants will also be required to provide CEL with current criminal record information.

Resource Teachers

This course consists of theory, a core practicum, an advanced practicum, advanced readings and on-line discussions, and specialized professional development workshops. Several topics covered during the training include: How to Supervise and Consult, Professionalism, Program Writing, and Assessment Tools and Rating Scales.

Applicants must have:

* A Master's degree in a Education or in health care profession such as psychology or speech and language pathology; and
* A minimum of two years experience working with children or youth with developmental delays.

Teacher Assistants

This course, which consists of a series of lectures, a core practicum and specialized professional development workshops, covers topics such as: Teaching Social Skills, Prompting and Shaping, Self Help Skills, Communication, Data Collection, Reinforcement, and Function of Behaviours.

Successful completion of this course will lead to more effective practices while working with children diagnosed with autism, increased job satisfaction and further employment opportunities in the field of autism.

Applicants should have:

* A post-secondary diploma related to early childhood education (ECE), two years of post-secondary studies in a related field or equivalent; and
* A minimum of one year of working with children or youth with developmental delays.

The Autism Intervention Training Program will be offered in October 2007 through to May 2008. A detailed schedule will be provided upon acceptance to the program, in June 2007.

Download the Application Package here (PDF format)

Contact Information
For additional information about this program, please contact:

College of Extended Learning UNB
P.O. Box 4400 Fredericton, New Brunswick, Canada E3B 5A3
Telephone: 506 458-7920
Toll Free: 1 866 599-4646
Fax: 506 453-3572
Web Site: cel.unb.ca

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Autism Research Ethics - Is It Ethical to Deny ABA to Autistic Infants for Research Purposes?

The AP is reporting several new autism research projects aimed at studying early clues of autism and other disorders. One such study mentioned is by Dr. Stanley Greenspan which, according to the AP report, will involve two groups of infants - One group will receive intensive behavior training, the other will not; both will be compared through age 5. But is it ethical to deny ABA intervention to infants who are diagnosed or suspected to have an Autism Spectrum Disorder for research purposes?

An opinion peace in the Medical Journal of Australia Children with autism deserve evidence-based intervention The evidence for behavioural therapy MJA Vol 178 5 May 2003 424, 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 impressive body of research that existed in 2003 in support of the effectiveness of ABA as an autism treatment. The authors noted "that 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.".

Since the MJA editorial piece there have been more studies confirming the efficacy of ABA as an autism intervention or treatment. How can a study which denies ABA treatment to autistic infants during the critical 2-5 year age period meet ethical standards in light of ABA's demonstrated evidence based effectiveness in treating autism? As Couper and Sampson noted ineffective therapies waste parents' money and valuable therapy time. Hopefully, at the very least the parents of infants in the control group, the infants not receiving ABA, have been informed that there are literally hundreds of studies demonstrating the effectiveness of ABA as an autism intervention. Hopefully they will have been told before agreeing to deny ABA treatment to their children that state, academic and professional bodies around the world have consistently concluded that ABA stands alone as the most solidly supported, evidence based treatment for autism to this day.


RESEARCH ON AUTISM IN INFANTS
Associated Press
Article Launched: 05/21/2007 01:31:53 AM PDT

AUTISM AND INFANTS

Research on identifying early clues of autism and other disorders and testing treatments is booming. Here are some of the doctors and researchers involved:

Dr. Fred Volkmar at Yale University is studying potential ways to diagnose autism in the first months of life, including whether looking at objects rather than people is a sign. "I think we're on the verge of being able to do a much better job" of diagnosing autism in infancy, Volkmar said.

Researcher Stephen Porges at the University of Illinois at Chicago is starting a five-year study of whether excessive crying past 6 months of age might be an early sign of autism, attention deficit or other behavioral problems.

Dr. Stanley Greenspan, a psychiatry professor at George Washington University, is launching a multimillion-dollar study involving parents and babies at risk for autism or attention deficit disorder. One group will receive intensive behavior training, the other will not; both will be compared through age 5.

http://www.mercurynews.com/news/ci_5946767

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GFCF Diet Treatment for Autism Unsupported by Evidence

One of the persistently promoted treatments for autism is the GFCF diet - a treatment with no evidence to support its efficacy in treating autism. We tried it with Conor several years ago with no result. Anecodotal evidence, which is available to support ANY therapy, keeps the treatment popular with parents. The GFCF diet treatment is pushed on the internet, even by some who know there is no scientific evidence to support the diet as an effective autism treatment. Unfortunately, parents will continue to spend time, money and their hopes on this and other non evidence based treatments.


"Science disputes autism's diet link

HAYLEY MICK

From Monday's Globe and Mail

May 8, 2007 at 9:13 AM EDT

TORONTO — Tina Szenasi's quest to cure her two autistic sons began with soy milk.

Ms. Szenasi switched to the milk substitute after reading testimonials from other parents who said their autistic children's symptoms had improved - even disappeared - when dairy and wheat were eliminated from their diet.

Her doctor dismissed it as farfetched. But the mother of three from Barrie, Ont., felt she had no choice but to try the gluten-free, casein-free (GFCF) diet for her boys, whose neurological disorder made them easily distressed and socially isolated. Introducing the diet "gave me a sense of hope," she says.

She quickly transformed her kitchen into a culinary laboratory. Her butterless cookies crumbled. Cakes made using rice flour were a disaster. Grocery bills topped $500 each week as she ordered gluten-free bread and potato-based milk substitutes that weren't available in her small city.

But her sons improved within weeks, she says. Now, Adam, 11, often hugs his parents and has fewer tantrums. Alex, an eight-year-old soccer and video-game enthusiast, behaves like most other kids. "He's almost fully recovered, I think because of the dietary intervention," Ms. Szenasi says.

More Canadian parents are adopting the controversial diet for their autistic children as support spreads through a fringe group of health professionals, commercial websites and chat forums. Supporters say gluten and casein are not well digested by autistic kids, who often exhibit digestive problems and food allergies.

The protein compounds, they say, wreak havoc with the children's neurological development. To eliminate those triggers, parents spend thousands of extra dollars on special foods, vitamins and enzyme supplements as well as laboratory testing in the United States.

But most mainstream scientists remain skeptical of the gut-brain connection in autism. They say there's no scientific proof that the diet works. Some doctors warn that parents' desperation, paired with the mystery surrounding autism's causes, makes the field ripe - as a top American pediatric gastrointestinal specialist put it - for "charlatanism."

"If there's nothing else that you think is going to help and you're desperate, you'll do anything," said Wendy Roberts, the head of the autism research unit at the Hospital for Sick Children in Toronto.

The GFCF diet eliminates two major food groups from an autistic child's diet: dairy products, which have casein, and grains such as wheat, barley and rye, which contain gluten. Children on the diet often eat a lot of meat and vegetables, plus wheat and dairy alternatives. Some families add vitamin and enzyme supplements.

Even supporters say it isn't clear how the diet works. One explanation involves the "leaky gut syndrome." Undigested bits of protein, according to this theory, are absorbed through the intestine into the body, affecting the brain and producing symptoms associated with autism.

To date, only one double-blind controlled clinical trial - the gold standard for health research - has tested the diet. Published in March, 2006, in the Journal of Autism and Developmental Disorders, the study found that the group of children on the diet saw no significant improvements compared with the control group. Researchers say more testing is needed because the study was based on a small sample.

"The information that's out there suggests that the diet probably does not have a substantial effect on children's behaviours," says Lonnie Zwaigenbaum, a University of Alberta associate professor and director of autism research at Edmonton's Glenrose Rehabilitation Hospital.

Yet almost every parent Dr. Zwaigenbaum sees has either tried the GFCF diet with their autistic child or heard of it, he says. Parents are leaping ahead before science has definitively proved whether such a treatment works, he says, because there are compelling anecdotal cases of improvement.

Autism's causes have long stumped experts. They know that genes play a major role - but increasingly, with diagnosis of the condition on the rise, researchers are looking to environmental triggers including prenatal hormones, toxins, food allergies and infections. As a result, treatments such as the GFCF diet, which focus on removing such triggers, are gaining ground.

"It's word of mouth," say Paul Cutler, a family doctor based in Niagara Falls, N.Y., who works one day a week in Burlington, Ont. "Thanks to the Internet, they're finding these alternatives."

About half of Dr. Cutler's 200 autistic patients are Canadian, and they travel to his offices from across Ontario and Quebec. He charges $150 for an initial assessment that includes a battery of tests - a cheap fee compared with other doctors, he says.

Dr. Cutler has been trained by a group called Defeat Autism Now! (DAN!), which holds annual conferences and instructional sessions for doctors from across North America. The group recommends biomedical treatments for autism that focus on intestinal problems, nutrition, detoxification and allergies. Twenty-six Canadian doctors are listed on the group's website as DAN! practitioners.

They include Wendy Edwards, a pediatrician in Chatham, Ont., who found the diet four years ago when her three-year-old son was diagnosed with autism. He improved so dramatically, she says, that the diet is now the first thing she recommends for autistic patients who travel to see her from across Ontario and even Manitoba. She also encourages other biomedical treatments, including supplements such as vitamin B6, magnesium and dimethylglycine, or DMG.

Some research suggests that up to 40 per cent of children with autism spectrum disorders could benefit from dietary changes, including the removal of gluten or casein, says Timothy Buie, a pediatric gastrointestinal specialist at Massachusetts General Hospital in Boston.

But Dr. Buie, who runs one of the largest practices for children with developmental disabilities in the United States, warns that parents may place so much hope in the diet that they falsely believe their child has improved. "The placebo response is gigantic," he says. "Parents can interpret a benefit because they want their kid to do better."

While parents travel to find doctors, they also ship urine and stool samples to U.S. labs to be analyzed for nutrient and vitamin deficiencies - tests that aren't widely available in Canada. One parent interviewed for this story said she paid up to $300 (U.S.) each for several lab tests.

Some in the industry may be peddling false hopes for big profit, critics warn. "People may choose to recommend things therapeutically that are in their financial interest," Dr. Buie says. "You walk out of a doctor's office and they give you a list of vitamins that they happen to be selling in their outside room."

Other doctors worry about the role of for-profit labs. "Many are not bona fide labs and they're making a fortune," says Dr. Roberts at Sick Kids in Toronto, who adds that parents have handed her results from U.S. labs that don't make any sense.

The Internet is where many parents go to share information, recipes and contacts. Brenda-Lee Olson from Terrace, B.C., moderates a popular online group called GFCFrecipes, whose membership has multiplied tenfold, to 3,400, in the past six years.

"It helps to know certain tricks," says Ms. Olson, who says many people don't believe her 17-year-old son is autistic, thanks to the diet. "The only way to get that information is from other parents."Ms. Szenasi says she'll keep her children on the diet despite the cost. She now keeps a folder stuffed with GFCF diet material at the health-food store where she works, so she can hand it out to other parents."

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Dr Sheila Laredo's Senate Testimony on ABA as Evidence Based Autism Intervention

[Dr. Sheila Laredo, above right, with lawyer Mary Ebert]

The Canadian Senate heard testimony from a range of individuals with diverse opinions on all autism related issues. The Senate Committee did not delve too far into the treatment issues in its recommendations, taking a relatively safe "survey" approach of pointing out that there is disagreement about the effectiveness of autism interventions and calling for more research. The Senate Committee made no effort to weigh or assess the expertise or credibility of the persons who offered commentary on the subject. Nonetheless the Senate Committee transcripts of the evidence offered is available on line and there is some very valuable information available. One particularly important witness was Dr. Sheila Laredo who explained the concept of evidence based interventions and stated clearly that no other autism intervention enjoys near the body of supportive evidence of its effectiveness as does ABA. Dr. Laredo is both a parent of two autistic children and a researcher.

Dr. Sheila Laredo, as an individual: I am honoured to speak to you today. I am speaking as a parent of three children, two of whom have autism, as an advocate in my role as a litigant in a case, and as a researcher. I will focus my comments on funding for effective evidence-based interventions. That is in the purview of both my experience and expertise.

It is an important time to consider this as the provincial governments are starting to review their policies for children with autism, certainly, in Ontario, where I live. I feel that the federal government can play a role by ensuring that evidence-based consistent standards are developed and implemented across Canada.

With respect to my own experience, when my first child was diagnosed, our family was devastated. While my son was very verbal, all he could do was repeat what other people said. He could not respond. At the age of three and a half, he was in diapers, he had tantrums every day, many times a day, spent his time flicking lights on and off and spinning whatever he could get his hands on, breakable or not. Within months of his diagnosis, when his younger brother failed to start to speak, we knew we had a second son with autism as well.

After that diagnosis, I thought that my mother's hat would be best served using my scientific one so that I could find an effective intervention for him. It did not take long to see that the pop literature on the internet was full of contradictory, confusing and biased information.

Instead I went to the scientific literature. I was fortunate to be able to do that. That is where I found ABA. My bias is evident. I am a physician, and a PhD in clinical epidemiology, which means that my expertise is in research methods. Despite the heat and emotions of some of the witnesses you have heard, I can tell you there is a correct way to assess the quality of literature.

In my brief, under appendix A, I provided you research materials that demonstrate that there is consensus across the medical literature, psychological literature and educational literature and that there is a hierarchy of evidence with randomized control trials being the best evidence when it comes to looking at the effectiveness of interventions.

Expert opinion, like mine, is the lowest form of evidence. That is why I have provided you with all these documents to back up what I say.

Using that knowledge, I then reviewed many of the papers that I provided to you in appendix B, including the randomized and nonrandomized controlled clinical trials of the ABA intervention. While no study is perfect, there are no other randomized trials of any research interventions, nor large clinical trials demonstrating effectiveness as ABA does. Although some have suggested that the research is biased, it is consistent across research groups, across continents, across age groups and across settings, whether it is at schools, in centres, or in homes. Other treatments like facilitated communication and auditory integration have not held up to scientific scrutiny, and other interventions have had no research at all.

Despite these comments, I have absolutely no stake in ABA. The moment something else is found to be more effective, you can be that sure we will switch.

One criticism of ABA is that it has not been effective for all people. That is probably true. The fact that not all children will be cured by ABA does not preclude the fact that the majority of children will enjoy a profound and substantive benefit. My children have learned to read, write and speak without tantrums all the time and to participate in a regular class. ABA should not be held to a standard that is not expected for other interventions. When we give chemotherapy for cancer or cholesterol drugs for prevention of heart disease we strive for 100 per cent effectiveness but we do not achieve it. ABA meets and exceeds the standards we set for other treatments.

Another criticism is that ABA or IBI is unethical because it does not respect the autistic individual. I applaud those individuals that have done so well they can speak to you today despite the fact that they have not needed ABA. Unfortunately, the dismal data is that such individuals are in the tiny minority. The fortunate experience of exceptional cases should not set policy for the vast majority of individuals with autism — people like my sons.

It has been difficult for us to implement ABA. There has been little help from medical and social services agencies. We had other family members teach us how to set up and implement an ABA program. We managed, because we had many advantages. We have a highly supportive extended family. My husband and I are professionals and our colleagues have extended us many courtesies. Our children participated in the Ontario Autism Intervention Program.

With all that, we struggled. These advantages are not the case for the majority of families. Governments can help. They have started to help, but more can be done. Too little intervention will result in the majority of autism dollars being spent on providing heavily supported living or institutional living where children could have been taught to try to support themselves. It is analogous to the parable give a man a fish, feed him for a day; teach him to fish, feed him forever. However, it has been argued that ABA is too expensive.

Peter Coyte is a nationally respected health economist who has published data demonstrating that the average savings over the lifetime of a child who receives ABA, even taking into account the fact that not all children are cured and not all children even receive some benefit, is over $1,000 per child. Almost no medical interventions save money. Despite that, we undertake them. For example, diabetes costs Canadians $9 billion a year. The issue is not reallocating money from health expenditures but that we look at autism expenditures in the context of important health spending, in particular when we know a striking benefit is possible.

From Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue 12 - Evidence - December 6 meeting

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