Sunday, November 11, 2007

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.


Thursday, November 08, 2007

Applied Behavior Analysis As Effective Autism Intervention - The Eoin McGinn Example

At that time there was no intervention care in the north of Ireland. There is no cure for autism but as a parent you want to be able to look back and say you did the best that you could for your child.

We spoke to specialists and were able to get a clinical psychologist to come over from America. We also engaged a consultant from London Early Autism Project who came over every two weeks working with Applied Behaviour Analysis (ABA), the only treatment that has been proved as a way to improve the lives of kids with autism.

If I were to go back three or four years I think the biggest achievement we hoped for with Eoin was to get him toilet trained but now he is in P4 at the same school as his brothers. People would still know that he has issues but his progress has been outstanding. He is a living example of how intervention and ABA can work.

Brendan McGinn, Northern Ireland, 2006 Link Award Recipient

The Belfast Telegraph on Wednesday, November 7, 2007, featured the story of Brendan McGinn, the 2006 Link Award Recipient for for his dedicated efforts in fundraising for autism charity SPEAC (Special Provision for the Education of Autistic Children) which in the last three years has raised £500,000 and set up the first specialist school in Northern Ireland for children with autism. Mr. McGinn tells of being inspired in his efforts by his son autistic son Eoin who was helped dramatically with Applied Behavior Analysis. As Brendan McGinn stated: "'I was able to pay to help my autistic son. Now I want to support other parents'"


Autism Parents Rally at New York Supreme Court

With autism diagnoses rising, and the reality of that fact being denied by governments and neurodiversity ideologues alike it is parents who are carrying the fight for increased autism services to help their autistic children overcome the intellectual, communication, social and behavior deficits that will impair their lives. It is not governments, not neurodiversity's self proclaimed "real voices of autism", not even autism advocacy organizations who wrestle with charitable tax status limitations and the desire for government grants who carry the fight. It is the much maligned parents of autistic children who carry the fight to help their children overcome their deficits. From New Brunswick, British Columbia and Ontario to New York state it is parents who stand alone in the fight to help their autistic children.

In Parents Rally For Autism At NYS Supreme Court WCBSTV reports on a rally by parents of autistic children on the steps of the New York Supreme Court. The report tells the story of the Urban family and their struggle in the courts with the Hicksville school district to obtain a personal aid specifically for their autistic daughter at Lee Avenue Elementary School. The parents rallying on the steps of the New York Supreme Court share that battle as the realites of autism are ignored by authorities.

Governments and authorities across North America have ignored the autism crisis until confronted and pushed by parents , the real voices for their autistic children, who have been forced to yell loudly on behalf of their children on the steps of court houses and legislatures.

Autism and the Saskatchewan Party Government

The Saskatchewan Party will now form the government of Saskatchewan which, despite a booming economy, has done nothing of substance to help autistic children receive treatment. The defeated NDP government did nothing to address autism treatment issues and many Saskatchewan residents have moved next door to Alberta so their autistic children could receive treatment.

One thing that is abundantly clear in Canada over the past decade is that autism is not a partisan issue. Governments of all political stripes, including the just defeated NDP government of Saskatchewan, have been indifferent at times to the plight of autistic children and adults. Here in New Brunswick it was the previous Bernard Lord Conservative government that first began to take serious steps to help autistic children with pre-school funding for evidence based autism treatment, and that effort is being carried forward now by the Shawn Graham Liberal government in New Brunswick schools where Teacher Aides and Resource teachers are receiving quality autism training at the UNB-CEL Autism Intervention Training program.

Federally the Chretien-Martin Liberals did nothing to help autistic children or adults in Canada while in power. And the NDP did nothing to push a minority Liberal government to address autism issues. In opposition the Liberal Party led by Andy Scott and Shawn Murphy and the NDP led by Peter Stoffer have committed to implementing a National Autism Strategy. Now it is the current Conservative government and an obstructionist separatist party which has indicated they will do nothing of substance to help address autism issues.

Autism was not discussed by campaigning political candidates in the Saskatchewan election as it was in Ontario recently. The Saskatchewan Party is reported to be a right of center party. That may mean something, or it may mean nothing, in terms of its willingness to help the autistic population of Saskatchewan. The one lesson that is clear from history is that autism is NOT a partisan issue. All parties have ignored autism issues for years but change has begun for the better in several jurisdictions by governments bearing different political labels.

Hopefully autistic children and adults will be included in the Saskatchewan of the new Saskatchewan Party government of Premier-Elect Brad Wall.

Wednesday, November 07, 2007

“Paralysis by Analysis” - FEAT BC Comment On Harper Government National Autism Symposium

In Canada FEAT of BC has been a leader in fighting for ABA intervention for autistic children. The fight has been waged in several forums legal, media and increasingly the political arena. In this press release concerning the invitation only National Autism Symposium FEAT BC calls the Symposium what it is - an otherwise meaningless tool to create a false impression of action by a Conservative government which is outrageously indifferent to the plight of autistic children in Canada and, by comparison to the autism efforts of national governments of the United States and Australia, an international embarrassment.

November 7, 2007

“Paralysis by Analysis”


Vancouver, BC – Canada’s no longer so new Conservative government has convened a so-called ‘National Autism Research Symposium’ in Toronto later this week. “For what purpose one wonders,” asks Jean Lewis, a founding director of FEAT-BC [Families for Early Autism Treatment of BC]. “Like the ‘Child Health Summit’ held in Ottawa last April, this is another invitation-only talk-fest. It is designed to produce photo-ops and sound-bites that assist the government in a cynical exercise aimed at manufacturing a societal consensus concerning an approach to autism treatment and its funding; one that suits its transparently manipulative agenda. The exercise is sure to fail.”

This month marks the third anniversary of the Auton decision by the Supreme Court of Canada, in which the jurists stated unequivocally that the question of funding for autism treatment was for parliament and the legislatures. “In three years, all that Canada’s myopic political class and their blinkered bureaucratic acolytes have produced has been delay, disingenuous news releases and, in the case of Ontario, outright mendacity,” states Dr. Sabrina Freeman, founder and executive director of FEAT-BC. “In three years, how many children have been diagnosed with this devastating condition? How many opportunities to provide substantive help, and to learn, have been lost? How many families have come asunder? How much needless suffering has been inflicted, all due to a lack of political will to do the right thing?” While the federal government and its apologists parrot the public relations mantra that ‘more research is necessary’, Canadian courts found, over three years ago, that science-based, proven effective, treatment for autism is available.

In 2006, the United States Congress voted unanimously to put $945 million into combating autism. Recently, the Australian national government has pledged $190 million to this cause. Why is our federal government out of step? Could it be because autistic children and their exhausted parents have to date been absent from the electoral battlefield?

If so, that’s about to change, according to Lewis. “The reckless disregard of this Conservative federal government with respect to these disabled children and their desperate, and often destitute, families verges on the criminal,” says Jean Lewis. “Their callousness is breath-taking and will, come the next federal election, be met with a perfect political storm. That’s not a threat, it’s a promise.”

For further information, contact: Jean Lewis at 604-925-4401 or 604-290-5737, and jean.lewis@telus.net .

Autism, ABA and the Importance of Accurate Data

If parents seeking treatment for their autistic children are interested in getting past ideological rhetoric and ill informed opinions about ABA, applied behavior analysis, they would be wise to consider information available from sources like Alan Harchik chief operating officer of May Institute, a US national nonprofit organization that provides educational, rehabilitative, and behavioral healthcare services to individuals with autism and other developmental disabilities, brain injury, mental illness, and behavioral healthcare needs.

One of the great strengths and distinguishing features of ABA is the data keeping. In Autism studies need accurate flow of data Mr. Harchik stresses the importance of collecting accurate information about academic performance and problem behaviors; one of the distinguishing characteristics of using applied behavior analysis when working with children with autism and other developmental disabilities. This behavioral data provides an actual measure of a child's progress, can be shared with members of a child's interdisciplinary team, and allows for thoughtful, informed decisions about possible changes in procedures and treatments. In this article Mr. Harchik offers some practical suggestions on how to ensure the accuracy of this important information.


Tuesday, November 06, 2007

Globe and Mail Neurodiversity Article - The Aftermath

The Globe and Mail article on Neurodiversity ‘Autistics': We don't want a cure was, IMHO, a balanced presentation. I am not a fan of the Neurodiversity ideologues. But I knew when Ms. Erin Anderssen interviewed me that she was trying to do an article on their perspective. I knew that she would not write about them the way that I would and I did not expect her, as a journalist, to do that. I appreciated being given the opportunity to offer a different perspective.

It is the parents and other caregivers who have the legal, moral and practical responsibility to care for their children not internet ideologues from all parts of the globe. Nor do extremely high functioning autistic persons like Michelle Dawson, Amanda Bags or Jim Sinclair have any right to tell the world what my son and others like him are thinking or feeling. They have no idea what he wants, or thinks. They do not share anywhere near the same challenges in life that he endures.

In particular the Neurodiversity ideologues have no business pretending that ABA is an imposition of my values on my son or a failure to appreciate him. That kind of rhetoric is a crock of ..... nonsense, pure nonsense. ABA helps build skills in my son, helps him communicate and modify dangerous behaviors, end of story.

I don't want to cure any of these people. I want to help my son and other families trying to help their children. And it would be nice if the Dawsons, Baggs and Sinclairs could find some other causes to advocate for with their considerable intellectual and communication gifts. They have nothing to contribute to my son's life.

And they really don't even know what they are talking about. That can be seen most clearly in the recent American Academy of Pediatrics description, based on 5 decades of research, of ABA and its proven effectiveness in helping autistic children with lasting gains in intellect, communication and behavior; in direct contradiction to the nonsense offered by Ms. Dawson and her Neurodiversity followers.

What is particularly sad is to to see parents like Estee Klar-Wolfond who doesn't agree with the parents' perspectives seeking ABA interventions for their children, and so joins the Neurodiversity crowd in criticizing other parents. And she toes the line as written by Michelle Dawson and her followers. There is no room for dissent amongst the followers of Michelle Dawson:

See as an example the comment below, by Ms. Klar-Wolfond posted on the Globe site about the balanced article written by Ms. Anderssen, an opinion I share even though I don't share the rest of Ms. Klar-Wolfond's autism views. Then read the second comment taken from Michelle Dawson's discussion group "Misbehaviour of Behaviourists" after Ms. Dawson issued her scathing denunciation of the Globe article:
  1. Estee Klar-Wolfond from Toronto, Canada writes: Thank you for this balanced article showing the values of the autistic community. I would disagree that the 'neurodiversity movement are 'ashamed of' low-functioning autistics. It's quite the contrary. This is an issue that effects the entire disability communities -- the right to be heard regarding their perspectives, as well as to increase choice and services that assist all autistic individuals in Canadian society to reach their fullest potential. Estee Klar-Wolfond Founder/Executive Director The Autism Acceptance Project

  1. 6883


    Estee 6883


    11-05-2007 10:40 AM ET (US)
    Edited by author 11-05-2007 10:42 AM
    Actually no... I did not say it was "balanced." I said that it was the Globe's ATTEMPT at balance and as a result, was not balanced at all. The media, as I said in my blog post, attempts to paint the issue black and white as it services the sensationalism they continue to promote to sell papers. The article completely missed the point of the issues, IMO. Please re-read my blog post on it. http://www.quicktopic.com/27/H/vJvhV4fDnBgw7

I added the italics to Ms. Klar-Wolfond's two comments for emphasis, One comment complimented Ms. Anderssen's balance in the Globe article. In the second, on the Dawson discussion group, after Michelle Dawson denounced the article, Ms. Klar-Wolfond denies that the article was balanced or that she even said that it was balanced.

Unlike Ms. Klar-Wolfond I will stick to my first comment. Although I do not share the perspective of the Neurodiversity ideologues, and I would not have described them as Ms. Anderssen did, I think her article was balanced. Exactly what I would expect from a professional journalist.

Monday, November 05, 2007

Harper Government Urged To Take Serious Action To Address Canada's Autism Crisis

A number of key federally based autism organizations in Canada have united to demand a serious response by the Harper government to the Canadian Senate committee on autism funding recommendations to address Canada's national autism crisis.

Autism Society Canada

Autism Canada Foundation

Canadian-American Research Consortium

Autism Speaks Canada

Autism Treatment Services of Canada

Geneva Centre for Autism



Nov 05, 2007 08:47 ET



Collective Voice of the Autism Community in Canada Calls on Government to Take Steps to Establish National Autism Strategy

OTTAWA, ONTARIO--(Marketwire - Nov. 5, 2007) - The Conservative Government has provided its response to the Standing Senate Committee recommendations on Autism in its Response to the Report of the Standing Senate Committee on Social Affairs, Science and Technology, Pay Now or Pay Later: Autism Families in Crisis, tabled on October 17th, 2007.

Good news in the federal response is the announcement of a new Autism Research Chair at Simon Fraser University focusing on the study of treatments and interventions. Autism organizations are encouraged to see more focus on applied research and best practices. In addition the government has promised further funding for ASD research in general, has committed to hosting a fall research symposium and is promising more investigation into the potential for developing national surveillance on ASD.

The response states that "the Government of Canada acknowledges the complexity of the challenges related to ASD and agrees with the Committee that there is much work to be done to enhance collaboration and evidence on this issue..." Autism advocates across Canada had hoped that the federal government would take a stronger position in response to the report, which provides unmistakably clear direction. A number of key organizations are coming together to urge our federal government to take a clear leadership role in confronting what truly is a national problem.

Last December, the Standing Senate Committee investigating Funding for the Treatment of Autism heard from hundreds of families, adults with Autism Spectrum Disorders (ASD), experts in treatment and service delivery, researchers and Autism advocacy organizations across Canada - representing the over 200,000 children, youth and adults affected by ASD in this country. These figures, which are sobering enough, do not represent the true number of Canadians affected by the lack of adequate action and services for ASD. Parents, other family members and caregivers are also deeply affected, emotionally, socially and financially.

In its ground breaking report entitled, PAY NOW OR PAY LATER: Autism Families in Crisis (March 2007) the bi-partisan Senate Committee recommended some urgent initiatives that the federal government could implement over the next two years in response to the crisis situation faced by many individuals with ASD and their families.

Most importantly, both Conservative and Liberal members of this Senate Committee called on our government to develop a comprehensive National Autism Strategy to address the complex needs and glaring inequalities in public funding and access to targeted services and treatment across the country.

ASD typically presents lifelong challenges to those individuals diagnosed as well as to their family members and to society as a whole - a comprehensive national plan is vital.

The government declined to take up the Senate's recommendation to lead the way forward in committing to a National ASD Strategy. In spite of receiving hundreds of hours of testimony from all concerned; well-vetted and honed down by a dedicated committee of Senators, it seems that: "... governments do not yet know enough about ASD and its treatments to implement effective and well-informed strategies that would lead to meaningful outcomes,...". The 12-page response is very focused on knowledge gaps and provides a great deal of information about current special needs programming - little of which is Autism-specific.

Our government's Senate Committee also supported fully the recommendation of a federal/provincial/territorial ministerial conference to look at innovative funding arrangements for the purpose of financing Autism therapies, defining essential services and looking at new family support measures but the government has also declined to take up this recommendation. With the exception of First Nations and Inuit communities, the response is in keeping with federal practice and places all responsibility for health and educational funding decisions on transfer payments and service delivery squarely on the provinces and territories. This is in striking contrast to the U.S. policy dealing with the same funding crisis: the United States' Combating Autism Act of 2006 authorized the federal government to spend $US 945 million over five years for Autism research, screening, intervention and education. Last week the joint U.S. House and Senate conference committee approved $37 million for this year's spending on autism services and treatment programs alone.

While progress has been made, it is clear that Autism Spectrum Disorders have not yet found their rightful place in the health, education and social service sectors at any level of our governments. Working in the Autism field, we hear daily the stories of the mental and financial hardship that parents, family members and many adults with ASD experience. We are deeply concerned about the shortage of services; we recognize from first-hand, on-the-ground experience, the urgent need for qualified professionals to work with individuals with ASD.

Immediate action is needed to address these glaring gaps.

Now that this response has clearly acknowledged the seriousness of the pressures facing families and individuals with Autism - we hope the next step will be for our federal government, in cooperation with all of the provinces and territories, to take a leadership role with respect to Autism. Our growing stakeholder Alliance of ASD advocates and professionals working in the field provides an excellent and willing collaborative resource to assist this government in taking up the Senate's call to develop a comprehensive National ASD Strategy to address the lifespan issues of individuals with Autism Spectrum Disorders. If our government is seeking input in developing such a strategy, the expertise is certainly available.

We call on the Canadian government to embrace the recommendations of its Senate and to show the leadership we so badly need to address this crisis as other countries have done. We all feel strongly that a National Autism Strategy must be formulated very soon and that developing this strategy should be vigorously pursued.

For more information, please contact

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

or

Autism Canada Foundation
Laurie Mawlam, Executive Director
mawlam@ciaccess.com

or

Canadian-American Research Consortium
Jeanette Holden, PhD, Program Director, ASD
holdenj@queensu.ca

or

Autism Speaks Canada
Suzanne Lanthier, Executive Director
slanthier@autismspeaks.org

or

Autism Treatment Services of Canada
Dave Mikkelsen, Executive Director
davem@autism.ca

or

Geneva Centre for Autism
Margaret Whelan, Executive Director
mwhelan@autism.net

No Real Autism Increase? Any Evidence To Back That Up?

The latest bandwagon to roll across the autism terrain is the argument, already presented by some as fact, that the stunning increases in estimated rates of autism are due entirely to expanded definitions of autism and the availability of special education monies for those with an autism label. On the latter point it is argued that doctors are more inclined today to diagnose autism because an autism label will trigger special education resources in the United States.

I am willing to accept, without substantial evidence, that the changes to the DSM-IV, in 1994, would have had a significant impact on the numbers of autism diagnoses, particularly in the first few years after the 1994 changes. The mere expansion of diagnostic criteria certainly seems on its face to logically indicate that more people would be caught by the diagnosis. And as an active participant in autism discussions, and advocate for my son who has a classic Autism Disorder diagnosis, I have argued that there are many high functioning autistic persons purporting to speak on behalf of "autistics' who bear little resemblance in their intellectual and communication skills to my son.

The incentive to diagnose autism argument might also have merit to some extent although I am not sure how much of a factor this would be in the increases. There would also be strong reasons why doctors and parents want not want to place an inaccurate label on their children or patients. An erroneous diagnosis could result in inappropriate treatment.

But where is the evidence that the massive increases in recent years is due solely to these perceptual or social factors rather than to actual increases? Many of the diagnostic changes took place in 1994. I have been an active autism advocate since 1999. At that time, 5 years after the 1994 DSM changes, the prevailing figure was 1 in 500 persons on the "autism spectrum". Soon it changed to 1 in 250. Just 2-3 years ago the figure was lowered to 1 in 166 and only in the last year to 1 in 150 - in the United States as a whole. In New Jersey the estimated rate is 1 in 98 and in the United Kingdom 1 in 100.

Do the 1994 changes account for a stunning rise in estimated autism diagnoses from 1 in 500 to 1 in 150 in the US as a whole, 1 in 100 in the UK and 1 in 98 in the State of New Jersey? These are very large increases. Where is the evidence that such increases are entirely attributable to the 1994 diagnostic changes? And why are there current geographic discrepancies.

Furthermore what about the unified theory of autism? Genetics has long been known to play a very large role in autism causality. But there are also theories which look to both genetic and environmental factors of autism causality. If the environment plays a role, in some cases at least, in triggering autism, is it safe to assume that the stunning increases of recent years are entirely attributable to the 1994 diagnostic criteria changes?

Where is the evidence?

Autism Every Day At The Nantucket Film Festival

'Autism Every Day' was scheduled to play this past week at the Nantucket Film Festival. The film has been a key element in the efforts by Autism Speaks and Bob and Suzanne Wright to raise autism awareness, real autism awareness, around the globe. The film generated much hostility from those who wish to portray autism as simply a natural variation, a subgroup of people with different ways, perhaps even superior ways of thinking. For daring to portray the real challenges of their autistic children's neurological disorders the parents of Autism Every day were vilified by the Neurodiversity movement on the internet.

Autism Every Day, and the courageous parents who participated in the filming, helped shatter the propaganda of the 'Autism is Beautiful' movement, the nonsense perpetrated by the Neurodiversity ideologists, those who make a career of pretending to be the voices of autistic people and those who like to hold 'acceptance projects'. For the Neurodiversity movement 'Autism Every Day' could not stand without challenge. And so they lashed out at the loving parents who appeared in the video.

Autism Every Day presented autism as it really is - a neuro-biological developmental disorder characterized by impaired communication, deficits in social interaction, and in some cases dangerous behavior. As the father of a profoundly autistic boy; a father who loves his son dearly and takes joy in each moment with him, while dealing with the hard realities of his autism, I thank the Autism Every Day parents for their courage and candor.

I hope they and their children are doing well.

Sunday, November 04, 2007

Dear Health Minister Clement: Re Autism Gold Standard Intervention

October 31, 2007

Honourable Tony Clement
Minister of Health (Canada)

Dear Honourable Minister

Recently your government filed its response to the Senate's "Pay Now Or Pay Later" report on autism services and funding in Canada. As the parent of a profoundly autistic 11 1/2 year old boy I have been active in autism advocacy in my province for the past 9 years. I was disappointed, extremely disappointed, with your government's weak response to an issue which now is estimated to directly affect 1 in 150 Canadians and their families.

In particular I found objectionable your government's stated position that there is no consensus on a gold standard of treatment for autism. That position is simply inconsistent with the professional literature as I understand it, admittedly from the perspective of a mere parent. State and federal agencies in the United States over the past decade from Maine to New York to California have routinely described ABA, Applied Behavior Analysis, as an evidence based effective intervention for autistic children; the only intervention to be accorded that level of recognition of its efficacy.

This week the American Academy of Pediatrics released two autism reports one dealing with, and setting out recommendations concerning the need for very early diagnosis of autism disorders in children. The other report included a review of the professional literature on autism interventions. In Management of Children With Autism Spectrum Disorders the AAP stated with respect to Applied Behavior Analysis (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.31–4

With all respect Honourable Minister, the position that there is no Gold Standard treatment or intervention for autism, is not in the language of the legal profession of which I am a member, "credible". I ask you to reconsider this stand by your government. I also ask you to look past the strict interpretation of Canadian constitutional jurisdiction over health matters on which your government and Mr. Duceppe's Bloc Quebecois relies in opposing federally funded ABA treatment for autism. Cooperative federalism has worked well in many instances in this country and to my knowledge is not inconsistent with the ultimate separatist aims of Mr. Duceppe's party. Before his party achieves full sovereignty autistic children will be growing older and needing ABA services in Quebec where autistic children despite claims of "we do it differently" are also badly in need of funded ABA services.

I ask you to put aside petty politics and help autistic children wherever they reside in Canada. Put the ideology and rhetoric in a drawer for safe keeping and help autistic children with some of the multi billion dollar federal surplus. Help autistic children now. Tomorrow is too late.

Harold L Doherty
Fredericton NB

Saturday, November 03, 2007

The Wrath of Michelle Dawson

Erin Anderssen and the Globe and Mail have incurred the considerable wrath of researcher Michelle Dawson of the Autism Specialized Clinic Rivière-des-Prairies Hospital University of Montréal. Ms Dawson objected to the article, ‘Autistics': We don't want a cure, published in today's Globe and Mail , and written by Ms. Anderssen, who apparently did not follow the script Ms. Dawson expected to see in the article.

In Erin Anderssen does not take autism seriously Ms. Dawson, the anti-ABA activist* who does not want to be called an activist, issues one of her scathing attacks, this time against Ms. Anderssen. Ms. Anderssen should not be too concerned though. Anyone who does not march to Ms. Dawson's tune on autism issues receives the same treatment, sometimes with virtually the same title - Autism advocates do not take autism seriously.

I have, once again, been singled out for condemnation by Ms. Dawson in her reaction to the Globe and Mail article. After all I speak candidly in describing my son, who has Autism Disorder, and who is described by two professional assessments as autistic with profound developmental delays. And, I advocate persistently for evidence based interventions to assist autistic children. Two reasons to merit Ms. Dawson's condemnation.

To date only Applied Behavior Analysis, or ABA, meets evidence based standards as an effective autism intervention. Before Ms. Dawson writes yet another blog comment mocking 'Harold Doherty's science' she might want to read what the American Academy of Pediatrics said this week about ABA, following the reports of a number of state and federal agencies in the US over the past decade who have reached the same conclusion:

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

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

That is the result that I, and many parent advocates for ABA intervention for their children, have been seeking to obtain - gains in IQ, language, academic performance, adaptive and social behavior - not for Ms. Dawson and other high functioning autistic adults - but for our own autistic children. Some, like my son Conor, do not enjoy Ms. Dawson's considerable intellectual and communication gifts. For seeking to help our own children we have earned the wrath of Michelle Dawson; a wrath which is in fact a badge to be worn with pride and honor.

*(although the case did not involve her personally, Ms. Dawson appeared as an intervenor "An Autistic at the Supreme Court " in the Auton Supreme Court of Canada case to voice her opposition to government funded ABA treatment for autism, and again to the same end before the Canadian Senate)

No One Is Trying To Cure Them

The Globe and Mail published an article today, ‘Autistics': We don't want a cure , for which I was interviewed as a voice speaking out against the Neurodiversity movement; a movement which opposes efforts to treat or cure autistic children. Unfortunately, although the article is balanced the title implies that people are trying to force high functioning autistic persons to be cured of their autism, a false implication. Parents seek to educate, treat, and cure their own autistic children, particularly low functioning autistic persons, whose very existence is glossed over and ignored by the Neurodiversity movement.

Ms Estee Klar-Wolfond is a frequent spokesperson on behalf of the ND movement and offered her on line comment in response to the perspective I offered as a balance to the ND perspective:


I would disagree that the "neurodiversity movement are "ashamed of" low-functioning autistics. It's quite the contrary. This is an issue that effects the entire disability communities -- the right to be heard regarding their perspectives, as well as to increase choice and services that assist all autistic individuals in Canadian society to reach their fullest potential. Estee Klar-Wolfond Founder/Executive Director The Autism Acceptance Project


As the father of an 11 1/2 year old boy with Autism Disorder who has advocated for services for autistic children, youths and adults I find Ms. Klar-Wolfond's comments incredulous. Anyone with a Google blog search bar can simply insert the words 'Autism Every Day' to see the hateful comments made by ND advocates about parents who described some of the harsh realities faced by low functioning autistic children. Even the expression 'low functioning' is objected to by the ND crowd.

The realities of low functioning, intellectually challenged autistic persons are not featured in the rhetoric of the ND movement. Indeed Amanda Baggs, who actually attended high school and college, discussed her various education and medical issues with various education and medical professionals, and writes sophisticated complex blog commentaries is portrayed by the ND movement as your typical low functioning autistic person. Ms. Klar-Wolfond has herself made reference to Ms. Baggs in her commentary. The emphasis is always the same - portray autism as a different, even superior, form of intelligence. There is no place for truly low functioning autistic persons with limited communication ability or understanding of the world in the ND rhetoric. There is no place in Neurodiversity's false autism reality for discussion of such ugly facts as head banging caused brain injury, self inflicted bite wounds or aggression against family members and professional attendants.

Although Ms. Klar-Wolfond claims that autistic persons should have the right to be heard she rejects, with disdain, the voices of those parents who speak for their autistic children, children who can not speak for themselves. Ms. Klar-Wolfond opposes the efforts of those parents who seek to obtain ABA services for their children. She is not alone in the Neurodiversity movement in opposing services sought by parents for their autistic children.

Dr. Laurent Mottron was also interviewed for the Globe and Mail article. Dr. Mottron is a Montreal area "autism expert" who has studied high functioning autistic persons for decades and has conducted a study purporting to show the innate intelligence of all autistic persons. The good Dr. Mottron has appeared before the Canadian Senate in an effort to persuade the Canadian government NOT to fund ABA services for autistic children. He also provided an affidavit in support of Michelle Dawson's intervention before the Supreme Court of Canada as part of her ongoing crusade in opposition to ABA services for autistic children.

Neurodiversity advocates have every right in the world to oppose any form of treatment for themselves if they are themselves autistic. But they have no right to claim they are speaking for other peoples' autistic children, particularly low functioning autistic children who can not speak for themselves. That is their parents' right and duty, or that of other persons who actually care for and raise these children. These are the very voices that Ms. Estee-Klar Wolfond and the Neurodiversity movement do not want to hear.

Friday, November 02, 2007

Autism Hate Talk On The Internet

Autism discussions generate much controversy on the internet. Some of it is inherent in the intense issues confronting people with a variety of similar, yet very different disorders. Some of the controversy degenerates into pure expressions of hatred as set out in the attached post by someone called talheres.

This type of hate commentary and cheap insult is found all too often amongst some ideologically based movements on the internet. The internet offers much in the way of valuable information and an opportunity for rational discussion of difficult issues. Unfortunately it also allows cowardly bigots like this talheres to spew venom to a world wide audience. With all the good the internet brings in the way of enhanced communication, it also brings the occasional blight.

I suppose it is fitting that this person uses a posting symbol of a pussy cat with a rifle.


And speaking of psychiatry-
talheres
2007-11-02 01:08 am UTC (link)
This is yet another example of why I hate autism 'advocates'

http://autisminnb.blogspot.com/2007/11/autisms-rotenberg-dilemna.html

The complete disregard for the facts of what went on and goes on in that institution disgusts me, but it's not like I can expect much from people who take issue against those who speak out against the mercury militia.

So now I'm that tempted to visit that thing tomorrow, thanks to dipshits like this.

Thursday, November 01, 2007

Autism Awareness (Or Lack Thereof) At The Etownian

Khouri E. McGrann is a staff writer for the Etownian Online, an online publication of the Elizabethtown College in Pennsylvania. In Autism attacks: Addled adults aren’t appreciative the writer offers up opinions on the early screening recommendations of the American Academy of Pediatrics. The source of the expertise behind those opinions is not revealed in this editorial in which, amongst other pearls of wisdom, the staff writer informs us that:

The only reason parents should feel the need to test their child at all is a doctor’s reccomendation. [sic]

The author clearly knows nothing of the role parents typically play in bringing health issues to the attention of medical professionals. Our profoundly autistic son is 11 1/2. 10 years ago, knowing nothing of autism, we sought input from our family doctor concerning various behavioral issues we noticed about him and an almost complete lack of any speech. Our doctor said "he's a boy, boys develop speech later". We weren't convinced and our doctor was kind enough to refer us to a pediatrician who, after conducting various tests, concluded that our son was PDD-NOS. That diagnosis was subsequently changed to Autism Disorder and he has been assessed by both pediatrician and psychologist as profoundly autistic.

The Etownian editorial writer then goes on to offer this less than gentle reproach to worried parents:

If parents constantly misread their children’s behavior, then they aren’t appreciating their son or daughter’s unique qualities. They are acknowledging that their baby isn’t like every other baby and assuming something must be wrong, instead of valuing a special, unique offspring. I know I wouldn’t be too happy if my parents told me, “Yes, you were a quiet baby. And you loved color-coordinating your blocks. We thought you were autistic. We had you tested. Twice, in fact.”

To put this in the politest language possible this kind of lecture is a crock. Parents who seek medical attention for their children do so precisely because they love and value their children and have a deep sense of responsibility for their welfare. This "failure to appreciate your child" attack on parents is nonsense, pure nonsense.

But I suppose I should be thankful that the author has shared such autism wisdom with us. After all, were it not for reading this editorial I would never have known that:

Currently, one in 350 are autistic, making it more common than childhood cancer, blindness, and downs syndrome.

Someone should pass that bit of autism knowledge to the Center for Disease Control which erroneously estimates autism prevalence at 1 in 150.



Autism's Rotenberg Dilemna

In Autism, Aversives and the Rotenberg School of Shock I set out excerpts from the Mother Jones Article School of Shock which described the use of aversives in treating autism and teen behavior issues at the Judge Rotenberg Educational Center. I commented on that article, expressing my own dismay that the use of electric shock aversives are still permitted in the US today. Matthew Israel, Ph. D. Executive Director of the Judge Rotenberg Educational Center provided a comment which can be found at that location and directs readers to go to a JRC site where Dr. Israel's response to the Mother Jones article, RESPONSE TO JENNIFER GONNERMAN’S ARTICLE, “SCHOOL OF SHOCK” , can be found.

I didn't find time to take a look at Dr. Israel's response until yesterday after being spurred to do so by reading some of the typical Neurodiversity, holier than thou, blogger commentary on Dr. Israel's response. I found that the "autism is wonderful crowd", while expressing the indignation that is almost invariably found in their commentary, did not really rebut or even address the very serious issues raised by Dr. Israel. In his response Dr. Israel referenced some extremely serious, even deadly, self injurious behavior, engaged in by some autistic children, including head banging to the point of brain injury, chewing of cheeks until holes are created, and self starvation.

Dr. Israel's position, as I understand it, is that even ABA, without the use of aversives, is not always able to address these dangerous behaviors. With the use of a mild two second shock, ABA techniques are used at the Rotenberg Center to satisfactorily address these dangerous behaviors and prevent further injury to autistic children and youths. The alternatives are to simply allow these behaviors and injuries to continue or to resort to undesirable treatments like psychotropic drugs and persistent use of restraints or isolation.

If I have misunderstood Dr. Israel's Response on behalf of the Rotenberg Center then I hope that he will again visit this site and correct me. If I did not then I would invite any professional with actual knowledge of these issues who might read this site to offer comment. Either to confirm the elements of Dr. Israel's response or refute them, in whole or in part.

I know that dangerous and even deadly self injurious behaviors are engaged in by some autistic persons. As the father of a profoundly autistic son I have seen him injure himself by biting and almost cause injury to family members. So far, we have dealt with such behavior through the use of non-aversive ABA approaches but that might or might not be sufficient as my son advances through the destabilizing puberty years. I take these issues seriously and I know that it is necessary to look at the hard realities and make hard choices. Information, and evidence, is critical in such difficult decision making.

I reacted with an "oh, no, are they still doing this" response to the story about the Rotenberg center's use of aversives in treating autism but Dr. Israel's response has given me pause to reconsider my knee jerk reaction. If anyone has any hard information and informed comment they can offer in considering these issues your comments will be welcomed.

It is one thing to say the Rotenberg center methods are cruel and inhumane. It is another thing entirely to provide a more satisfactory, effective, alternative in treating some dangerous and deadly autistic behaviors.

That is the Rotenberg dilemna.

Wednesday, October 31, 2007

Mecamylamine Autism Treatment To Be Tested

Mecamylamine is a drug used in the 1950's to treat high blood pressure. It has more recently been used as a treatment for symptoms associated with Tourette's Syndrome and Attention Deficit Disorder. Now, it is about to be tested by a team at Ohio State University Medical Center as a treatment for autism symptoms:


It turns out the next new treatment might be something that's been around for generations. It's a drug called mecamylamine, and it was the first pill used to treat high blodd pressure in the 1950's.*** By the time Alicia was a child, it was nearly obsolete. Now, it just might help her son, and a million more children with autism.

"If it works, it would be a really important breakthrough," says Eugene Arnold, MD, with Ohio State University Medical Center. Dr. Arnold and his team of researchers will test the drug on children with autism. He says it's not what the drug did in the 50's to help with high blood pressure that's giving them hope, but what it's done recently. Mecamylamine has been effective in helping children control the symptoms of conditions like Tourette Syndrome and Attention Deficit Disorder. He hopes it may do the same in autism.

"There is some hope that it will make a significant improvement in the core symptoms: the social impairment, the communication, the repetitive behavior, such that it will help them to faster get along the road to rehabilitation," says Dr. Arnold.

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

Tuesday, October 30, 2007

Autism Gold Standard Intervention - Nova Scotia ABA/IEBI Autism Program Produces Positive Reslts

This has not been a good week for those who insist that there is no consensus on a gold standard intervention for autistic children. The AAP description of ABA as an intervention with more than 5 decades of studies providing positive results for autistic children is followed by the results from a Nova Scotia IEBI/ABA study showing positive results. It's enough to give anti-ABA crusaders a real headache.


Autism Treatment Program Getting Positive Results




Department of Health

October 30, 2007 12:00
A program designed to enhance social and communication skills for young children with autism spectrum disorder is providing added benefits to their families.

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.

Monday, October 29, 2007

AAP's "Other Report" Endorses ABA as Autism Treatment

Most of the autism news and blog coverage dealt with the American Academy of Pediatrics report calling for early autism screening for all children, including two screenings before age 2. Good advice. The AAP also issues a second report. However, the AAP's other report went virtually unmentioned amongst news sources, autism bloggers and neurodiversity bloggers. The second AAP report, Management of Children With Autism Spectrum Disorders, reviewed autism interventions and had this to say about ABA treatment for autism (Bold Text Highlighting added for emphasis - HLD) :

Applied Behavior Analysis


Applied behavior analysis (ABA) is the process of applying interventions that are based on the principles of learning derived from experimental psychology research to systematically change behavior and to demonstrate that the interventions used are responsible for the observable improvement in behavior. ABA methods are used to increase and maintain desirable adaptive behaviors, reduce interfering maladaptive behaviors or narrow the conditions under which they occur, teach new skills, and generalize behaviors to new environments or situations. ABA focuses on the reliable measurement and objective evaluation of observable behavior within relevant settings including the home, school, and community. The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–40

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.