Help For Your Autistic Child? Consult Credible Autism Authorities

If you are seeking help for your autistic child you should certainly consult your local professionals. If you do so you may want to make sure they are up to date and aware of some of the leading reviews of the effectiveness of various autism interventions. One thing you absolutely should NOT do is listen to anti-ABA activists. Their opposition to ABA is usually based on ideology, emotion and their own personal rejection of autism as a disorder or disability. Some credible agencies which have reviewed the scientific basis supporting the effectiveness of which hundreds of studies over several decades supporting the effectiveness of ABA as an effective autism intervention include:

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

MADSEC (Maine) Autism Task Force Report 2000 (rev ed)

US Surgeon General 1999

NY State Dept of Health 2005 (rev ed)

This is what the AAP and MADSEC reports stated:

American Academy of Pediatrics (2007):

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

MADSEC Autism Task Force Report (2000):

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

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

…

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

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

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

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

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

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

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

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

In 1993, McEachin, et al investigated the nine students who achieved the best
outcomes in the 1987 Lovaas study. After a thorough evaluation of adaptive functioning, IQ and personality conducted by professionals blind as to the child’s treatment status, evaluators could not distinguish treatment subjects from those who were not. Subsequent to the work of Lovaas and his associates, a number of investigators have
addressed outcomes from intensive intervention programs for children with autism. For example, the May Institute reported outcomes on 14 children with autism who received 15 - 20 hours of discrete trial training (Anderson, et al, 1987). While results were not as striking as those reported by Lovaas, significant gains were reported which exceeded those obtained in more traditional treatment paradigms. Similarly, Sheinkopf and Siegel (1998) have recently reported on interventions based upon discrete trial training which resulted in significant gains in the treated children’s’ IQ, as well as a reduction in the symptoms of autism. It should be noted that subjects in the May and Sheinkopf and Siegel studies were given a far less intense program than those of the Lovaas study, which may have implications regarding the impact of intensity on the effectiveness of treatment.

...

Conclusions
There is a wealth of validated and peer-reviewed studies supporting the efficacy of ABA
methods to improve and sustain socially significant behaviors in every domain, in individuals
with autism. Importantly, results reported include “meaningful” outcomes such as increased
social skills, communication skills academic performance, and overall cognitive functioning.
These reflect clinically-significant quality of life improvements. While studies varied as to the
magnitude of gains, all have demonstrated long term retention of gains made.

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

• a large number of empirically-based systematic instruction methods that lead to the
acquisition of skills, and to the decrease/elimination of aberrant behaviors;
• a technology for systematically evaluating the efficacy of interventions intended to affect
individual learning and behavior; and
• substantial cost/benefit.

Over 30 years of rigorous research and peer review of applied behavior analysis’ effectiveness for individuals with autism demonstrate ABA has been objectively substantiated as effective based upon the scope and quality of science. [highlighting added - HLD]

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

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

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

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

YES WE CAN!

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A Questionable Autism Partnership, Has Autism Speaks Sold Its Voice?

Autism Speaks has made tremendous contributions in raising autism awareness to a world level including helping to establish the first annual World Autism Awareness Day, April 2 by UN General Assembly Resolution. It's promotion of autism research has been a significant factor in spurring an Autism Knowledge Revolution. It has used the first class media savvy and connections of Bob and Suzanne Wright to help inform and educate citizens and public authorities around the world. I have been an admirer of Autism Speaks. My Camry even sports a blue Autism Speaks magnetic puzzle piece. But now comes news of a partnership between Autism Speaks and Nutricia North America, a company which produces hypoallergenic medical foods. "Under the partnership, Nutricia will sponsor 26 Walk Now for Autism events nationwide. The grassroots program is a signature fundraising for Autism Speaks". For me this raises questions and causes me to ask - has Autism Speaks sold its voice?

Nutricia's food products are used in gluten-casein free diets for autistic children. On a personal level I do not know if such diets are of any value in treating autistic children. I am not dismissive of Jenny McCarthy, or any parent, who asserts that such diets have helped their autistic children but to my knowledge such diets do not, at present, enjoy a solid professional evidence basis for their effectiveness in treating autistic disorders. In an October 29, 2007 press release for its report Management of Children With Autism Spectrum Disorders the American Academy of Pediatrics stated:

“Many parents are interested in CAM treatments such as various vitamin and mineral supplements, chelation therapy, and diet restrictions. It’s important for pediatricians to maintain open communication and continue to work with these families even if there is disagreement about treatment choices, ” said co-author of the reports Scott M. Myers, MD, FAAP. “At the same time, it’s also important to critically evaluate the scientific evidence of effectiveness and risk of harm and convey this information to the families, just as one should for treatment with medication and for non-medical interventions.”

Although use of the gluten-free/casein-free diet for children with ASDs is popular, there is little evidence to support or refute this intervention. More studies are in progress, and it is anticipated that these studies will provide substantially more useful information regarding the efficacy of the gluten-free/casein-free diet.

Studies may eventually provide the evidence to support the claims of effectiveness of gluten-free/casein free diets but those studies should be as independent and objective as possible if they are to be persuasive. On this blog site you will not see any of the commercial advertising that is featured on larger, better known, autism/neurodiversity blogs such as Autism Vox and About.com:Autism. I choose to comment on autism free of the need to keep up visitor totals, Google or Technorati rankings, in order to generate advertising revenue. Such considerations can influence the content of what is posted.

Studies of the effectiveness of glutein/casein free diets in treating autism represent positive developments in seeking more treatment options for autism IF those studies remain free of undue influence. And IF the association in the public mind of such diets with Autism Speaks does not give them a free pass to acceptance as effective autism treatments without the evidence.

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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.

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Autism and Educators' Control Issues in Vernon Connecticut

It looks like an old story is playing out again in Vernon, Connecticut. ABA based instruction for autistic children, provided under contract with an outside agency, is being terminated by the local education authorities and is being brought "in house". As reported in the Journal Inquirer:


VERNON — The local school system’s decision to stop contracting with the Capitol Region Education Council to teach children with autism — and to bring the work in house — has angered parents, who say any change can harm a child with an autistic disorder.

.....

For more than a decade, CREC has taught children with autism at the Center Road School. The organization uses the Applied Behavior Analysis instructional method, which has the approval of the U.S. Surgeon General.

In fact the US Surgeon General is not the only agency to endorse ABA as an effective evidence backed instructional method for autistic children. State agencies in New York and California, the MADSEC Autism Task Force Report from Maine and the 2007 report of the American Academy of Pediatrics have all endorsed ABA as the most evidence based effective intervention for autistic children. As summarized in the 2007 AAP Report 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.31–40

So why would a successful program be discontinued and the education of autistic children brought "in house"? Control is often the real motivation for such decisions by alleged "educators" who often know little about autism, and generally know much less than the concerned parents who live 24/7 with the realities of autism. Here in New Brunswick, Canada, much progress has been made in providing autistic students, including my son Conor, with a real education. Autism specific training has begun to be provided to Teacher Aides that work with autistic children and Conor is currently receiving instruction from a UNB Autism Intervention Program trained TA under programs and supervision by autism trained resource teachers. But it was not always the case and even today senior "educators" still resist the commitment by our current government to provide UNB Autism training, which includes ABA based instruction methods, to teacher aides and resource teachers.

The excuses over the years are usually the same. I personally began advocating several years ago for ABA instruction in our schools and a Department of Education spokesman was interviewed as part of a story in which I was featured. The spokesman downplayed ABA and said that the Department was interested in TEACCH. TEACCH has often been described as "promising" but lacking in evidence of effectiveness in teaching autistic children. As summarized in the MADSEC ( Maine Administrators of Services for Children with Disabilities) Autism Task Force Report 1999, 2000 (rev.ed.) :


• 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.

• Without scientific evaluation of any kind:

Greenspan’s DIR/”Floor Time,” Son-Rise.

In New Brunswick the UNB Autism Intervention Training of teacher aides and resource teachers has been opposed by some senior educators who wanted to do the training ..... "in house" just as the Vernon educators want to provide the instruction of autistic children in house. In each case, the autism training here in New Brunswick, or the autism instruction in Connecticut, it is control which is the real issue, control by the educators. In the Connecticut story the alleged educators want to use non-ABA methods of instructing autistic children, despite the well studied effectiveness of ABA and despite the lack of evidence supporting the effectiveness of other autism instruction methods. One spokesman even acknowledged that one of the methods that they seek to use has NO evidence in support of its effectiveness:

Buell says the ABA method is “not going out the window” and will be used with children who do well with it.

But she said in a written statement that the school system plans to explore a variety of other instructional methods.

With one possible exception, all the methods under consideration have studies supporting their effectiveness, Buell added.

Spokesperson Buell did not elaborate, in the article anyway, about these "other instructional methods" and the studies in support of their effectiveness. Whatever they might be there is no way these other methods enjoy the scope and quality of research in support of their effectiveness, as reported by the Maine MADSEC Autism Task Force in 1999-2000, or the AAP in 2007.

It is not about "other instructional methods".

It is about control.

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Autism, Vaccines and A Shot in the Dark by Cornelia Read

I am not a member of either camp in the mercury /thimerosal/vaccines cause autism war . While I do not promote the vaccine autism theory I have never ruled vaccines, mercury or thimerosal as possible causes or contributing factors, along with other environmental factors, to the startling increases in autism. Nor do I subscribe to the easy assumptions promoted by the Neurodiversity faithful that the entirety of these increases is due to changing diagnostic definitions and criteria of autism, greater societal awareness and other social factors although I accept that these factors undoubtedly explain part of the increase.

The amazing research being conducted on the genetic bases of autism does not rule out environmental causes. Genetic conditions may create predispositions toward autism without being wholly explanatory of the development of autism. The fact that identical twins can have one autistic and one non-autistic twins suggests that external or environmental factors are also involved.

Nothing divides the autism world nearly as much as the mercury wars. Although I recognize the dangers posed by under vaccination of children and do not subscribe myself to the thimerosal causes autism theories I still try to keep an open mind and read new information as it emerges. Usually I try to read, to the best of my ability, and with the aid of professional interpretation, the new scientific literature on the subject. Most internet commentary is simply a rehash of fixed points of view and of questionable value no matter which camp it originates with but there are exceptions.

Writer Cornelia Read has written a blog comment called A Shot in the Dark at The Naked Truth about Literature and Life where she is one of the authors who "wrestle with the naked truth about literature and life". I recommend to anyone interested in autism who still has an open mind about the subject to read Ms Read's blog comment. It is well written and covers a lot of interesting ground, including the tobacco industry/cancer cover up, the "refrigerator moms theory of autism causation", the Simpsonwood conference, the rebuttal to the AAP provided by Dr. Michael Wagnitz father of an autistic child and a toxicologist, and the Polling case. Ms Read's comment is well written and thought provoking ....... if you are still open to thinking about this issue.

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Autism in Ireland - Fianna Fail Uses Old, Failed Logic, Tired Clichés, In Denying ABA Help To Autistic Children

It is sad to see that in Ireland today that old, failed logic and tired clichés like "one size does not fit all" are being trotted out by the governing Fianna Fail party to deny Applied Behavior Analysis (ABA) services to autistic children in Ireland:


Fianna Fáil's Peter Power appealed to the Opposition not to assume that those opposing the motion were 'anti-children', saying nobody was absolutely right, or absolutely wrong.

There was derisive laughter from the gallery when Fianna Fáil's Margaret Conlon, a former teacher, referred to children with special needs demonstrating their abilities 'when they play their tin whistles as a group'.

Concluding the debate for the Government, Minister Micheál Martin said the Government did not believe 'one size fits all', because autism is a continuum, and said the idea of a wide range of teaching methods was not a ridiculous suggestion.



These rationalizations were trotted out a decade ago in New Brunswick and other jurisdictions in Canada and the United States in an effort to deny proven effective ABA services for autistic children desperately in need of such help. These rationalizations are used to provide cover for a refusal to provide effective help for autistic children, not because of genuine concern that other methods might be more appropriate, but because of the cost implications of providing effective ABA intervention.

The reality is that stubborn insistence on refusing the only widely endorsed, evidence based, effective intervention for autistic children is motivated by nothing more than miserliness. The concern of those who resort to such obviously weak excuses has nothing to do with ensuring that each autistic child receives the best intervention possible for that child. If it were they would provide ABA for each child for whom, in their wisdom, they consider it appropriate and other interventions, whatever they might be, for the others. But they won't do that either; governing parties are often just too cheap to spend money to provide evidence based, effective ABA treatment and education for autistic children.

In New Brunswick the government of the day tried the old "one size does not fit all" approach . The debate over whether ABA should be provided by government was intense and at times very personal. But today, although improvements are badly needed, government funded ABA intervention is provided for pre schoolers and some methods and resource teachers and teacher aides are being trained to provide ABA in the school setting. My son with Autism Disorder , and in grade 6, receives ABA instruction every day at Nashwaaksis Middle School. ABA services are also provided to one extent or another in jurisdictions across Canada.

The debate in New Brunswick, and elsewhere, was moved forward by focusing on the principle that interventions should have a solid evidence basis to support their effectiveness. Without an evidence basis parents and officials are essentially gambling with the development of autistic children by wasting time on unproven and unreliable interventions. Here in New Brunswick it was the insistence on evidence based interventions that emerged from an Inter Departmental Committee review of autism specific services in 2001, which at that time were virtually non existent. It is that commitment to evidence based practices which has led to substantial improvements, and to the provision of ABA services for autistic children in New Brunswick.

One of the most helpful and influential reviews of the studies of autism intervention effectiveness was the MADSEC ( Maine Administrators of Services for Children with Disabilities) Autism Task Force Report 1999, 2000 (rev.ed.) The MADSEC Autism Task Force was commissioned to:

perform a detailed analysis of methodologies with which to educate children
with autism. This analysis will focus upon the scope and quality of scientific
research which objectively substantiates, or fails to substantiate, each method’s
effectiveness. Based upon the research analysis, the MADSEC Autism Task Force
will make recommendations for the consideration of decision makers who are key
to the intervention of children with autism. (Mission Statement, p. 2 )

The MADSEC team reviewed the scientific literature, literally hundreds of studies, in support of various autism interventions. It concluded, as summarize in its Executive Summary at pages 5-6:

• 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.

• Without scientific evaluation of any kind:

Greenspan’s DIR/”Floor Time,” Son-Rise.

The MADSEC depiction of ABA as the only autism intervention substantiated as effective, based on the scope and quality of research in support, was not the only review of the research literature to reach such a conclusion. State agencies in New York and California and the office of the US Surgeon General had reached similar conclusions. Nor was it the last.

In Management of Children With Autism Spectrum Disorders, October 29, 2007 the American Academy of Pediatrics stated:

Applied Behavior Analysis

Applied behavior analysis (ABA) is the process of applying interventions that are based on the principles of learning derived from experimental psychology research to systematically change behavior and to demonstrate that the interventions used are responsible for the observable improvement in behavior. ABA methods are used to increase and maintain desirable adaptive behaviors, reduce interfering maladaptive behaviors or narrow the conditions under which they occur, teach new skills, and generalize behaviors to new environments or situations. ABA focuses on the reliable measurement and objective evaluation of observable behavior within relevant settings including the home, school, and community. The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology 21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–40

Other interventions were evaluated by the AAP but no other intervention received a comparative positive assessment, not even close.

Fianna Fail is using the old beaten argument that one size does not fit all to justify refusal to provide ABA services to autistic children. In doing so they are denying those children the opportunity to realize, in the words of the AAP, "substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior".

Fianna Fail has its counterpart here in Canada. Although most provincial jurisdictions try to provide ABA services, the level of funding, and extent of service provided, varies from province to province. Our federal government has huge surpluses but will not provide funding to the provinces to pay for more ABA intervention. The Conservative government of Prime Minister Stephen Harper and Alleged Health Minister Tony Clement refuse, on a variety of flimsy grounds, including the old "one size does not fit all cliché", to spend money to help autistic children.

For Ireland's Fianna Fail, and for Canada's Conservative Party, it appears that money means more than children .... more than autistic children anyway.

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Autism and Censorship

I do not subscribe to the vaccine/thimerosal causes autism theory. It is necessary to state that at the outset because of the often heated, sometimes irrational nature of internet discussions of autism issues.

There exists a group of people, often called "neurodiversity" comprised of some high functioning autistic persons, some parents and professionals who share their view, who tend to promote a view of autism as a non-medical disability, a socially created disability which, from their perspective is simply different wiring of the brain. In the neurodiversity belief system autism is just a different way of thinking which, by their self identification with historical geniuses, can even be seen as superior to neurotypical thought. Positive views of autism are promoted. Negative realities of autism are suppressed. And now, in the American Academy of Pediatrics, the neurodiversity movement has a powerful new ally as it seeks to censor a work of fiction - the Eli Stone television series episode which apparently suggests a link between vaccines and autism.

The neurodiversity group is so rigid in its perspective that its adherents react with intense hostility to any negative portrayal of autism disorders such as that shown in the Autism Every Day video or the Ransom Notes campaign. The AED video presented the realities of autism from the perspective of caring parents. The Ransom Notes campaign was an attempt to create public awareness of some of the harsher realities of disabilities includig autism. While they have not been able to silence Autism Speaks, or the parents who created the Autism Every Day video, it is not for want of trying. And the "autism is beautiful" movement was a prime player in the successful effort to censor the Ransom Notes campaign, a campaign which was designed to focus attention on the harsher realities of various disabilities including autism disorders. Even Ph.D's, academics, presumably committed to the free exchange of ideas, bragged on the internet that they were doing "happy dances" over their success in shutting down the Ransom Notes campaign.

The Eli Stone episode is, on the surface, objectionable to the neurodiversity autism censors because it portrays a link between vaccines and autism. The episode features a family attorney who wins a court decision in which he successfully argues that a mercury-containing flu vaccine caused autism in a child. This alleged causal link enjoys little support in the medical and scientific communities and the AAP is presumably acting with good intentions when it seeks to censor the episode in question. But the same can not be said of the neurodiversity censors.

To be sure their criticisms of the vaccine autism link are consistent with accepted medical and scientific opinion but they want the episode and such discussion censored for another reason. They are offended by a medical model of autism disability. To them autism is a disability only because society imposes conditions on autistic persons which make it a disability. Even discussion of potential environmental bases for autism, anything other than a purely genetic model, is met with intense hostility by neurodiversity bloggers.

I have never been a fan of David Kirby, or his promotion of the vaccine causes autism theories. But I would not want to silence his voice, his opinion on this or any other subject. And I believe he has a point when he expresses alarm about the attempt to censor a television series episode in Scarier Than Fiction: Pediatricians Try To Censor ABC.

Autism Disorder is a medical disorder. Censorship is a severe social disorder which poses a threat to the health of a democratic society.

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Autism Waiting Lists In Alberta

The disparity in funding for autism treatment in Canada has, in the past, led some families with autistic children to move to oil rich Alberta, which has substantial government funding available for autistic children. But the availability of better funding has not translated into better services in all cases as children are stuck on lengthy waiting lists awaiting assessment. In Situation critical for autistic children Nicki Thomas of Sun Media reports on the critical shortage of staff and funding threatening the futures of autistic children in Edmonton. Terri Duncan of Children's Autism Services of Edmonton indicates that there are staffing shortages everywhere in Alberta and children are waiting up to a year for assessment. That year is a critically important year lost for autistic children in need of treatment:

Duncan said if autism isn't detected and treated early on, disruptive behaviour - like hitting, kicking and biting - develop from an inability to communicate effectively.

"Those behaviours can make lives really difficult and hard to deal with," she said.

"We would be able to take a lot more children off the waiting list if we had more qualified, trained staff," Duncan said.

Many credible studies and reviews of professional literature have confirmed that early ABA intervention is critically important for achieving the best possible outcome for autistic children. Lengthy waiting lists for assessment deprive autistic children of a better future.

In New Brunswick many, including me, have thought that a medical doctor is the only professional who can diagnose autism disorders. I was informed though that Psychologists can also make the initial autism diagnosis.

New Brunswick, Alberta, or anywhere else in Canada, it would seem that an important step in addressing the autism crisis, a crisis which is very real for families of children with autism, is to take steps to educate GP's in diagnosing autism. The tools being made available now by the American Academy of Pediatrics and similar organizations should be used by all doctors and psychologists to ensure autistic children receive early ABA treatment during the important early years without time being squandered.

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

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

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

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

Applied Behavior Analysis

Applied behavior analysis (ABA) is the process of applying interventions that are based on the principles of learning derived from experimental psychology research to systematically change behavior and to demonstrate that the interventions used are responsible for the observable improvement in behavior. ABA methods are used to increase and maintain desirable adaptive behaviors, reduce interfering maladaptive behaviors or narrow the conditions under which they occur, teach new skills, and generalize behaviors to new environments or situations. ABA focuses on the reliable measurement and objective evaluation of observable behavior within relevant settings including the home, school, and community. The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology 21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–40

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

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

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

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

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

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

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

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Autism News of the Year - 2007

These are my personal choices for top autism news of the year - 2007


Autism Research (Tie)

Autism genome scan reported.
Unified Theory of Autism published.


Autism Health Care

American Academy of Pediatric autism reports published:
Identification and Evaluation of Children with Autism Spectrum Disorders
Management of Children With Autism Spectrum Disorders

Autism Awareness (3 Way Tie)

Autism Every Day Video screening at the Sundance Film Fesitval.
Faces of Autism series published in the Vancouver Sun.
World Autism Awareness Day, April 2, declared by United Nations.

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Canada's Autism Disgrace

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

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

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

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

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

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

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