Conor's Fancy Footwork Beats A GFCF Autism Diet!

I don't know if peppers are part of an autism gfcf diet but Conor loves eating them and likes to show off some fancy footwork at the same time!

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Autism Speaks Finish Line at Dover

The finish line at Dover International Speedway this Sunday will feature blue Autism Speaks puzzle pieces inside the white squares. Autism Speaks is beyond compare in its abillity to find new ways to promote autism awareness.

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Autism Awareness: Run the Dream in Fredericton on June 5, 2008

Jonathon Howard will soon be in Fredericton.

Jonathon is raising awareness of autism across Canada, and raising funds for children's charities supporting autism, by running across the country, beginning on March 25 when he dipped his toe in the waters at St. John's Newfoundland. On June 5, 2008 from 7 to 9:30 he will be at the Delta Fredericton for an event which will feature "Their Stories", online video interviews of family members, caregivers, and persons with Autism Spectrum Disorders who share their personal stories of living with autism.

Keynote speakers will include Brian Rimpilainen of Fredericton. Brian is the Autism Society New Brunswick representative with the Autism Society Canada and he has worked tirelessly toward development of a National Autism Strategy and inclusion of Autism in Medicare. He will be running with Jonathon from Oromocto to Fredericton on June 2. The evening at the Delta Fredericton will be filled with music by Steve Waylon and Rebel Ridge, Cathy Hutch and BJ McKelvie. Cathy and BJ will be performing their autism song "I'm In Here".

In New Brunswick we have accomplished much with hope - and with hard, focused, work. Our focus has been on ensuring that autistic children in New Brunswick receive evidence based interventions and education both preschool and during the school years. Much has been accomplished although much remains to be done. Adult care for persons with autism in New Brunswick is abysmal and requires a massive overhaul. Efforts to provide decent residential care for autistic adults in New Brunswick will be successful only with hard, focused, work and determination. And with hope. Jonathon Howard's Run the Dream spreads the message of hope for persons with autism and those who love and care for them and hope is invaluable in fueling our efforts to make gains for autistic persons as preschoolers, students and adults.

Although I was aware of Jonathon Howard's Run the Dream since he began in late March the impact of what he was doing to raise autism awareness in Canada did not hit me until I spoke at the Medicare for Autism NOW! event in Oakville, Ontario on April 19. I had the privilege of meeting Norah Whitney, president of FEAT Ontario and her son Luke. Luke is a very smart young man and I enjoyed talking with him. One of the first things Luke said to me was to ask if I knew Jonathon Howard. At the time I couldn't say that I did, although I knew about Run the Dream. After June 5 I should be able to give Luke a different answer.

I urge everyone who can to attend the Run the Dream evening at the Delta Fredericton on June 5. Tickets are available at ticketatlantic.com. For more info contact Mike at 902‐444‐3887. Admission is $25 and will go towards children's charities that support autism.

It should be a lot of fun and a good evening for autism.

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Autism Media Breakthrough

A major autism media breakthrough has occurred with the publication of Julie Deardorff's blog on several sites including the Chicago Tribune and the BradentonHerald.com. In Autism's road to recovery full of questions, few answers Ms Deardorff comments on debate over whether autistic children should be "recovered". She presents the perspective of Alex Plank, a high functioning person with Aspergers, attending college, and otherwise functioning very well in society. But the breakthough occurs when Ms Deardorff also presents the perspective of David Royko who tells the story of his autistic son Ben, who, at age 14, is not toilet trained and will never live independently:

Plank has a point, but he also is a functioning member of society. A film and video major at George Mason University in Virginia, Plank speaks on neurodiversity at conferences. He has a girlfriend and friends. His interests include computers, writing and acting.

Autism, however, encompasses a range of individuals, from quirky, socially awkward geniuses to those such as Ben Royko, who is still not completely toilet trained at 14, has to live in a residential school setting, has very limited functional language and will never be able to live independently.

It is rare for an article, column or blog, whether published in hard copy or online, to mention and describe a severely autistic person and the grim realities some of them face.

Full marks to Ms Deardorff, the Chicago Tribune, and other sites which publish her blog for daring to consider and discuss the invisible autistics, the severely autistic, who do not get discussed by Neurodiversity bloggers at the "Autism" Hub and are not invited, and re-invited, to appear on CNN and other feel good, ratings driven, news sources.

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Alleged Autism Rights Movement and Severe Autism: Autistic Boy Goes Missing, Struck and Killed by Train

The Alleged Autism Rights Movement isn't much help for the severely autistic, the truly severely autistic, not the former students of colleges for gifted youths, but those, like my son Conor who wondered across a busy main street oblivious to the dangers of traffic; or those like the 10 year old severely autistic boy in North Carolina who was struck by a train and killed Saturday half an hour after police received a report he was missing from his home.

Severely autistic people like that poor North Carolina boy, like my son Conor, like the 50 year old autistic woman who could not communicate to tell the world she was being abused by staff in the residential care facility in which she lives in Long Island, are not likely to be posing for fashion photos in New York Magazine any time soon. The severely autistic people and the conditions they suffer with are not to be mentioned in polite company for fear that a realistic description of THEIR autism might offend those who pose in the New York Magazine, the internet divas and the former elf realm dwellers of the Alleged Autism Rights Movement.

To the Alleged Autism Rights leaders if you want to pretend to speak on behalf of all persons with autism then start speaking about those with actual Autistic Disorder who do not share all your gifts and good fortunes. And stop trying to suppress and obscure candid discussion of THEIR autism, not YOUR's, which is so different.

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Conor Has Fun At The Saint John River

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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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Another Open Autism Letter to the Honourable Stéphane Dion

May 21, 2008

The Hon. Stéphane Dion, P.C., M.P.
Leader of the Official Opposition
Liberal Party of Canada

Dear Mr. Dion

It has now been almost one full year since I emailed you asking whether a Liberal government led by Stéphane Dion would act promptly to include autism treatment in Canada's national health care scheme. To my great disappointment I received no reply. In almost 10 years of autism advocacy in New Brunswick and Canada you are the only politician or public decision maker who has not replied at all. I assume the fault lies with me, perhaps that I failed to observe some protocol with which I am unfamiliar, in posing my question to you. I apologize for whatever shortcoming I may have exhibited and ask you again, with respect, will a Liberal government led by you act promptly to include autism treatment in medicare?

In the year since I first posed this question thousands of autistic children across Canada have gone without effective evidence based treatment for their autistic conditions. Thousands have languished on waiting lists for treatment even in Ontario with all its many resources. Politicians can no longer credibly claim that there are many opinions about effective treatments. There have been several responsible reviews of the professional literature and studies of the effectiveness of various autism treatments. The most recent such review was by the American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders, (Nov 1, 2007) which stated 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

In the year since I first posed this question a frustrated father of a 15 year old autistic son, Stefan Marinoiu, of Toronto, has twice put his life on the line to draw attention to the need for treatment for all Canadians with autism. Children like his son Simon are literally going without the proven treatment that could help so many. Stefan walked for 11 days in mid-winter cold and blizzards to meet with Health Minister Tony Clement. More recently Stefan endured a 2 week hunger strike outside the Ontario legislature to impress again upon political leaders the need to take action to help autistic people in Canada. Federal financing could eliminate waiting lists for autism treatment in this country. That is a big part of the message Stefan Marinoiu has delivered in cold and hunger.

The Liberal Party of Canada could well form the next government of this great country. I ask you again sir, and with great respect, will you as Prime Minister act to include autism treatment in medicare to help the 1 in 150 Canadians and their family members who are struggling with the realities of autism disorders?

Parents across Canada have made their positions known asking, advocating, begging if necessary, to get their autistic children the treatment they need. Stefan Marinoiu has made his position known. He has twice risked his life to make it known that Canadians must act on behalf of autistic Canadians. Will you, the Honorable Stephane Dion, please make your position known?

Respectfully,


Harold L Doherty
Father of a 12 year old boy with Autistic Disorder
63 Alder Avenue
Fredericton NB E3A 1T1



dohertylaw@rogers.com wrote:

Date: Tue, 5 Jun 2007 16:16:24 -0700 (PDT)
From:
Subject: An Open Letter, An Autism Question
To: "The Hon. Stéphane Dion"


2007-06-05
The Hon. Stéphane Dion, P.C., M.P.
Leader of the Official Opposition
Liberal Party of Canada

Dear Mr. Dion
An Open Letter, an Autism Question
I am the father of two sons one of whom has classic Autism Disorder, with profound developmental delays, and I have been an autism advocate for the last eight years. This year I watched hopefully, but with no illusions, as Liberal MP Shawn Murphy of Charlottetown introduced Bill C-304, a Private Member’s bill, which would called for amendment of the Canada Health Act to provide coverage for autism treatments. As expected, Bill C-304 was defeated by the governing Conservative Party and its partner, the Bloc Québécois. The Liberal Party and the New Democratic Party both voted, by and large, in support of Bill C-304. You personally cast a vote in support of the Bill.

Autism is a serious neurological disorder which affects 1 in 150 Canadians, including 1 in 94 male Canadians. Persons with an autism disorder can display a wide range of deficits including intellectual, communication, behavioural and social deficits. While no known cure exists, a treatment which has been empirically demonstrated in hundreds of studies to decrease the negative autism deficits, and in some cases virtually eliminate, these deficits exists. Applied Behaviour Analysis (ABA) has been demonstrated to improve the abilities in all these areas and improve the quality of life of autistic persons in hundreds of studies. Effective, early and intensive intervention with ABA, in addition to being effective in treating autistic children, has also been shown to save governments very substantial sums of money in provision of government services over the life of an autistic person.

Despite these facts, governments in Canada have an atrocious record in dealing with the Autism Crisis which confronts Canada and in helping these very vulnerable people. In British Columbia and Ontario governing parties reversed election campaign promises to provide medicare coverage for autism choosing instead to spend hundreds of thousands of tax payer dollars to fight in court the parents of autistic children they had pledged to help. Mr. Dion I hope that you will not follow these shameful precedents, I hope you will not forget your vote in support of Bill C-304.

Mr. Dion, will you tell me, and other parents and caregivers of autistic children and persons, if the Liberal Party of Canada will, once elected, introduce legislation in the first year of your taking office as Prime Minister, to include autism treatment in medicare for all Canadians with autism regardless of residence and regardless of income?

Respectfully,

Harold L Doherty
Fredericton
New Brunswick
cc The Canadian Public

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Autism Hunger Strike Has Ended

Autism hunger striker Stefan Marinoiu ended his two week hunger strike yesterday. Stefan's efforts brought much attention to the cause of autistic persons and their families in Canada and impressed upon public decision makers in Ottawa and Toronto the seriousness of the Autism Crisis in Ontario and Canada.

It is a relief to me, and I am sure to his family and many friends and admirers, that Stefan has decided to end this stage of his autism advocacy and move ahead with other efforts. The determination that Stefan has demonstrated with his 11 day mid-winter Autism Trek from Toronto to Ottawa and his two week Autism Hunger Strike will come in handy in the continuing effort to obtain proper autism treatment, education and residential care in Ontario and elsewhere in Canada.

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Professor Pushes Prozac for Autistic Children in the UK

Professor Eric Hollander, chairman of psychiatry at the Mount Sinai School of Medicine in New York, is recommending that more doctors in the UK consider prescribing drugs known as SSRI's, selective serotonin reuptake inhibitors, including fluoxetine, or Prozac, for autistic children as part of an overall treatment program.

The SSRIs are aimed at reducing anxiety and disruptive behaviors. The article Autistic children 'should be given Prozac to control their symptoms at Checkbiotech.org appears to reference Dr. Hollander as stating that 37% of children in the US are currently taking SSRIs; many more than in the UK. Dr. Hollander claims that clinical trials with autistic children at low doses have shown improvements such as "fewer "endless ritual" behaviours, less anxiety and better social interaction" Recruitment of children for a "phase three" clinical trial is currently under way.

With respect to potential conflicts of interest the Checkbiotech article notes that in 2006, Neuropharm acquired the rights to develop fluoxetine for use in autism from the Mount SinaiSchool and that Professor Hollander is a consultant to the company.

I am not opposed to the use of medications in treating autism or symptoms of autism although we have never resorted to their use for Conor. I do believe that considerable care and caution must be exercised before their use. There is little discussion in the Checkbiotech article of possible negative effects of Prozac and other SSRI's on autistic children. The popular media and internet are full of articles alleging serious harmful side effects of Prozac. As a matter of intuition, and based on my son's own sensitivity to various environmental elements, I suspect that autistic children may be more vulnerable to any side effects that may be presented by Prozac and other SSRI use.

I also find it a little curious that a consultant for the company developing Prozac for use with autistic children is recommending greater use of Prozac for autistic children in the UK. This push is being made before completion of clinical trials. It is being pushed before assessment of the trial results by independent objective experts. How does Professor Hollander know that such products are effective and safe for autistic children before the studies are complete?

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Autism and the Role of Neurologists

ABC News has an interesting online feature The Answers to Autism May Be Inside the Mind in which neurologist Dr. Fernando Miranda argues that neurologists should be more involved in the diagnosis and treatment of autism disorders. The feature includes parent input, including an interview with Sarah Kavanaugh, whose son had been diagnosed with an autism disorder but who sought Dr. Miranda's assistance. An MRI disclosed that Beckett's corpus colusum, "the brain freeway that connects the two hemispheres, was a bit thin. That is crucial in any sort of diagnosis because it can affect language."

An EEG indicated signs of seizures which were not necessarily visible to observers. After more tests and a sleep EEG it was determined that her son did not in fact have an autism disorder. He " has a version of Landau Kleffner syndrome, a brain seizure disorder that can masquerade as autism." Since that diagnosis Kavanaugh's son has benefited substantially from anti-seizure medication.

The ABC feature also points out that it is not clear that all children would benefit from anti-seizure medication or that anti-seizure medication is always appropriate in cases where there are indications of limited seizure activity. Research is not currently advanced enough to indicate which children with seizure like symptoms might benefit from such medication. The drugs, in the view of some doctors, can be harmful. There is a risk that such medications could become over prescribed as some feel has happened with ADHD medications.

The children featured in this article benefited from the intervention of neurologists and ABC has done a service to children with autism and autism like conditions by highlighting that fact.

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Autism Reality - Missing Autistic Girl Found Safe in Michigan

The Grand Rapids Press reports that a 9 year old autistic Michigan girl who doesn't speak was found Thursday May 15 on the front porch of a residence following a two-hour search by officers and neighbors and reunited with her parents. The girl was reunited with her parents, who called authorities about five minutes after she slipped out of their house.

The "autism is beautiful, autism is a culture" ideologues of the Neurodiversity cult don't say much when autistic children go missing or otherwise place themselves in harm's way. Of course common sense and extremist ideology rarely go hand in hand. And it is hard to blather about the "joy of autism" when an autistic child who can not speak has gone missing.

Thankfully this story had a happy ending and the girl is safe at home with her parents.

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New Brunswick Autism Service Delivery Model At The CAUCE Conference 2008

The New Brunswick Autism Service Model will be discussed at the CAUCE Conference 2008 hosted this year by the University of Western Ontario. CAUCE, the Canadian Association for University Continuing Education, will be holding its 2008 Conference May 27, 2008 - May 31, 2008 at the Hilton London Ontario. Anne Higgins and Sheila Burt will be there for concurrent session 5 on May 30. Discussion of the New Brunswick Autism Service Model will focus on the UNB-CEL Autism Intervention Training Program:

How to Keep the Pieces Together: A Multi-Partnered Community Based Training Program

Anne Higgins, Director, Professional Development, College of Extended Learning, University of New Brunswick

Sheila Burt, Manager, Professional Development Division Delivery Team, University of New Brunswick

In 1998, a University of New Brunswick (UNB) professor and the autism community in the province lobbied the provincial government to fund intervention treatment for pre-school children. Today, the families of autistic children receive multi-partnered, systematized intervention services. The College of Extended Learning (CEL) at UNB is a pivotal partner in this endeavour, providing bilingual training and practicums, as well as holding together the many critical pieces of the complex service delivery. This session will examine the critical pieces that need to be paid attention to in the development and delivery of a multi-partnered, community-based training program and how the CEL has put mechanisms in place to anticipate problems and how these mechanisms are used to respond to multiple unique agendas.

The UNB professor referenced in the above excerpt is Professor Emeritus (Psychology) and Clinical Psychologist Paul McDonnell. Paul was honored by the Autism Society of New Brunswick in 2006 for his contributions to autism in New Brunswick. He is the only person who has been so honored and it is impossible to overstate his role in improving the lives of autistic persons in New Brunswick. He has worked directly with autistic children, educated parents, professionals and public decision makers. Paul has guided the autism community and autism advocates toward effective evidence based interventions for autism and has provided many of the cornerstone elements of the New Brunswick Autism Service Model.

In the excerpt it also states that "the College of Extended Learning (CEL) at UNB is a pivotal partner in this endeavour". I agree completely with that statement. Anne Higgins and Sheila Burt, working with Paul, Barb D'Entremont and Amanda Morgan from UNB have put together the UNB-CEL Autism Intervention Training Program which now provides training to persons working with autistic preschoolers and in New Brunswick schools. The UNB-CEL AIT program is marked by its quality and integrity and ensures that autistic children in New Brunswick receive quality effective evidence based intervention and education.

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New Brunswick Autism Service Delivery Model At ABA International Symposium in Chicago, May 23-28

The New Brunswick Autism Service Delivery Model is one of 4 models that will be presented at the #72 International Symposium of the Association for Behavior Analysis International 34th Annual Convention in Chicago, Illinois from May 23-27, 2008 at the Hilton Chicago. As a parent who saw the establishment and growth of the pre-school autism intervention program here in New Brunswick I am very appreciative of the efforts of Paul McDonnell, Barb D'Entremont, and Amanda Morgan of the University of New Brunswick and Sheila Bulmer of he Province of New Brunswick for what has been accomplished in providing pre-school autism intervention services in New Brunswick. Such services would not be possible without a training program of quality and integrity for service providers such as that provided by Anne Higgins and Sheila Burt at the UNB-CEL Autism Intervention Training Program. I thank you all and the other dedicated people at UNB, and with the Province of New Brunswick, who have given New Brunswick's autistic children access to effective evidence based autism treatment.

#72 International Symposium Intensive Early Intervention: Organizational Design, Evaluation and Management of Comprehensive Systems in Diverse International Locations BACB CE Offered. CE Instructor: Eric Larsson, Ph.D., BCBA

5/24/2008
3:30 PM - 4:50 PM
Continental B
AUT/OBM; Service Delivery
BACB CE Offered. CE Instructor: Eric Larsson, Ph.D., BCBA

Intensive Early Intervention: Organizational Design, Evaluation and Management of Comprehensive Systems in Diverse International Locations
Chair: Eric Larsson (Lovaas Institute Midwest)

The applied behavior analysis of Intensive Early Intervention for children with autism is conducted at many different levels of resolution. All levels of ABA are necessary to effectively manage the best possible outcomes for the greatest number of children. In order to build a sustainable program, numerous issues in accountability and management must be addressed. This symposium will present the results of four different organized systems for delivering and managing treatment efficacy. The management procedures of the organizations will include the molecular levels of ABA (single-subject analyses of all facets of treatment; component and package analyses of all facets of treatment; analysis of maintenance of treatment effects; analysis of the limits of generality of the treatment); the intermediate analysis of staff training, parent training, consumer responsiveness, and the organizational management necessary to sustain the treatment; and long-term traditional epidemiological analyses of consumer validity, cost-effectiveness and social validity to provide overall guidance to organizational design. Cultural and language issues will also be addressed. Current results of these organized systems will be presented.

St. Amant Applied Behavior Analysis Program: Publicly-Funded Centralized Early Intensive Behavioral Intervention. DANIELA FAZZIO (University of Manitoba/St. Amant) and Angela Cornick (St. Amant, Canada)

Abstract: The St. Amant ABA Program Preschool Services has operated since September 2002, serving 58 children in a home-based model (36 weekly hours, one-to-one, 3 years) funded by the Province of Manitoba to eligible children (diagnosis of Autism, Autism Spectrum Disorder, Asperger’s Syndrome, and PDD-NOS, under 5-years-old at intake, resident of Manitoba). Transition to group settings with program staff is planned based on client characteristics and school entry approach. The Program adopted the ABLLS® as a curriculum guide and evaluates group outcomes yearly (normative and criterion assessments of development, language, cognitive, adaptive skills and challenging behaviors, discrimination abilities, autism characteristics, and ABLLS skill acquisition.) Treatment is based on ABA principles and procedures with emphasis on discrete- trials teaching, is designed and supervised by ABA consultants (caseloads of 8) with graduate training in behavior analysis. Procedures are individualized, based on a standard package for skill acquisition and functional assessment and communication training for behavior problem reduction. Senior yutors (caseload of 4 clients) assist in training and supervision of tutors (caseloads of 2 clients) and parents, data collection (trial-by-trial) and summary. Overall supervision is provided by BCBA and licensed psychologist.

Meeting the Challenge of Organizational Development in Diverse Language and Cultural Contexts in Spain. VICTOR RODRIGUEZ GARCIA (Fundacion Planeta Imaginario) and Melissa J. Gard (Lovaas Institute Midwest)

Abstract: One of the challenges in replicating Lovaas’ 1987 outcome study is to translate the methods and evaluation procedures into other languages. This presentation will describe the organization and results of a privately-funded clinical intervention program in Catalonia, Spain, where there are actually two very different languages in predominance. This organization has been in the process of development for 14 years, and has met several challenges required to translate social and language norms, methods, and measurements into these other languages and cultures. In addition, the need for developing a comprehensive organization, in the face of little to no formal funding have also been addressed. Critical demands for treatment integrity will be reviewed, as well as systems that are being developed to meet these demands. The overall organizational design will be presented, as well as direct clinical data on short-term gains made by children in the program. The presentation will conclude with a focus on the directions of further development.

From Zero to 300: Development of a Comprehensive Preschool Intervention Program from “Scratch” in the Province of New Brunswick. PAUL M. MCDONNELL, Barbara D’Entremont, and Amanda Morgan (University of New Brunswick)

Abstract: This presentation describes the establishment of a preschool intervention in a largely rural Canadian province. When the initiative first began, there were virtually no services and no trained therapists or Clinical Supervisors anywhere within the province. After four years, there are now more than 300 trained therapists working throughout the province. The process of how supervisors and therapists were trained and how services were delivered on a province-wide basis is discussed. Special challenges included delivery of services in New Brunswick’s two official languages (French and English), delivery of services to First Nations children, and delivery of services to rural settings. Furthermore, a sample of outcomes from our first year of the province wide intervention is described. These data allow for the comparison of children in day care settings receiving eclectic programs with children in intensive behavior intervention. Finally, current initiatives to extend intervention services to school-aged children are examined.

Organization and Evaluation of a Responsive, Quality-Focused System for the Delivery of Intensive Early Intervention. ERIC V. LARSSON and Kara L. Riedesel (Lovaas Institute Midwest)

Abstract: The need for responsible accountability to consumer and stakeholder interests is paramount in the design of a sustainable intensive early intervention effort. This presentation will report the results of 13 years of effort in designing a comprehensive clinical management system for intensive early intervention. Given the authors’ direct participation in long-term early intervention research over a period of 25 years, the presentation will review the major challenges to treatment integrity and the management and evaluation systems put in place to address these challenges. The critical needs for organizational management and the methods and results of the organizational system across 238 children will be presented. The presentation will summarize the integration of single-subject analyses of the treatment of individual children, with the clinical system, which is designed to ensure the highest rate of best outcomes. The comprehensive clinical management system will be presented as it is designed to assure both consumers and stakeholders that the optimum services are being delivered to each child, and that the organizational capacity is being developed to increase the number of children who are effectively served. The current results will be described as will recommendations for standard accountability procedures for early intervention.

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Autism and Human Rights in Canada

Today is Bloggers Unite for Human Rights Day, May 15, 2008. The United Nations recently declared and celebrated April 2, 2008 as the first World Autism Awareness Day. The celebration of the event brought an inundation of media and other attention to autism and autism issues. Hopefully this historic development will lead to the recognition of the human rights of autistic persons like my son Conor, pictured above, top center, who has Autistic Disorder with profound developmental delays.

In Canada, unfortunately, much remains to be done before human rights for autistic persons, as reflected in some leading United Nations Declarations, will be recognized. In fact, progress toward such a goal took a huge step back with the Auton decision of the Supreme Court of Canada which essentially subordinated the rights of autistic persons to appropriate medical treatment to the policy making role of elected legislatures.

Auton in particular shows the distance that Canadians must go to reach the standards set by paragraph 6 of the UN Declaration on the Rights of Disabled Persons:

6. Disabled persons have the right to medical, psychological and functional treatment, including prosthetic and orthetic appliances, to medical and social rehabilitation, education, vocational training and rehabilitation, aid, counselling, placement services and other services which will enable them to develop their capabilities and skills to the maximum and will hasten the processes of their social integration or reintegration.

Although Auton effectively removed the courts as protectors of the Human Rights of Autistic persons it did not preclude political action to reach those goals. Canada has had a strong autism advocacy movement led by parents of autistic children seeking full lives for their children and gains have been made from Newfoundland to British Columbia by parent led autism activism. Much remains to be done though and the continuing hunger strike, now on day 11, of one father, Stefan Marinoiu, pictured in the bottom photo, outside the Ontario legislature in Toronto, highlights the desperation of families whose autistic children lose precious development time languishing on long waiting lists for appropriate medical treatment and for autism specific education in Ontario schools.

Declaration on the Rights of Disabled Persons

Proclaimed by General Assembly resolution 3447 (XXX) of 9 December 1975

The General Assembly,

Mindful of the pledge made by Member States, under the Charter of the United Nations to take joint and separate action in co-operation with the Organization to promote higher standards of living, full employment and conditions of economic and social progress and development,

Reaffirming its faith in human rights and fundamental freedoms and in the principles of peace, of the dignity and worth of the human person and of social justice proclaimed in the Charter,

Recalling the principles of the Universal Declaration of Human Rights, the International Covenants on Human Rights, the Declaration of the Rights of the Child and the Declaration on the Rights of Mentally Retarded Persons, as well as the standards already set for social progress in the constitutions, conventions, recommendations and resolutions of the International Labour Organisation, the United Nations Educational, Scientific and Cultural Organization, the World Health Organization, the United Nations Children's Fund and other organizations concerned,

Recalling also Economic and Social Council resolution 1921 (LVIII) of 6 May 1975 on the prevention of disability and the rehabilitation of disabled persons,

Emphasizing that the Declaration on Social Progress and Development has proclaimed the necessity of protecting the rights and assuring the welfare and rehabilitation of the physically and mentally disadvantaged,

Bearing in mind the necessity of preventing physical and mental disabilities and of assisting disabled persons to develop their abilities in the most varied fields of activities and of promoting their integration as far as possible in normal life,

Aware that certain countries, at their present stage of development, can devote only limited efforts to this end,

Proclaims this Declaration on the Rights of Disabled Persons and calls for national and international action to ensure that it will be used as a common basis and frame of reference for the protection of these rights:

1. The term "disabled person" means any person unable to ensure by himself or herself, wholly or partly, the necessities of a normal individual and/or social life, as a result of deficiency, either congenital or not, in his or her physical or mental capabilities.

2. Disabled persons shall enjoy all the rights set forth in this Declaration. These rights shall be granted to all disabled persons without any exception whatsoever and without distinction or discrimination on the basis of race, colour, sex, language, religion, political or other opinions, national or social origin, state of wealth, birth or any other situation applying either to the disabled person himself or herself or to his or her family.

3. Disabled persons have the inherent right to respect for their human dignity. Disabled persons, whatever the origin, nature and seriousness of their handicaps and disabilities, have the same fundamental rights as their fellow-citizens of the same age, which implies first and foremost the right to enjoy a decent life, as normal and full as possible.

4. Disabled persons have the same civil and political rights as other human beings; paragraph 7 of the Declaration on the Rights of Mentally Retarded Persons applies to any possible limitation or suppression of those rights for mentally disabled persons.

5. Disabled persons are entitled to the measures designed to enable them to become as self-reliant as possible.

6. Disabled persons have the right to medical, psychological and functional treatment, including prosthetic and orthetic appliances, to medical and social rehabilitation, education, vocational training and rehabilitation, aid, counselling, placement services and other services which will enable them to develop their capabilities and skills to the maximum and will hasten the processes of their social integration or reintegration.

7. Disabled persons have the right to economic and social security and to a decent level of living. They have the right, according to their capabilities, to secure and retain employment or to engage in a useful, productive and remunerative occupation and to join trade unions.

8. Disabled persons are entitled to have their special needs taken into consideration at all stages of economic and social planning.

9. Disabled persons have the right to live with their families or with foster parents and to participate in all social, creative or recreational activities. No disabled person shall be subjected, as far as his or her residence is concerned, to differential treatment other than that required by his or her condition or by the improvement which he or she may derive therefrom. If the stay of a disabled person in a specialized establishment is indispensable, the environment and living conditions therein shall be as close as possible to those of the normal life of a person of his or her age.

10. Disabled persons shall be protected against all exploitation, all regulations and all treatment of a discriminatory, abusive or degrading nature.

11. Disabled persons shall be able to avail themselves of qualified legal aid when such aid proves indispensable for the protection of their persons and property. If judicial proceedings are instituted against them, the legal procedure applied shall take their physical and mental condition fully into account.

12. Organizations of disabled persons may be usefully consulted in all matters regarding the rights of disabled persons.

13. Disabled persons, their families and communities shall be fully informed, by all appropriate means, of the rights contained in this Declaration.

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IOM Safety Review: Vaccines and Autism (2004) Discouraged Investigation of Possible Vaccine Autism Connection

Anyone wishing to read the Institute of Medicine (IOM) Immunization Safety Review: Vaccines and Autism (2004) referenced in the CBS interview with former NIH Head Dr. Bernadine Healy can access it at the National Academies Press site. The document is 214 pages with hundreds of references to autism. Some comments in the Review:

At page 152:

BOX 2
Committee Conclusions and Recommendations

SCIENTIFIC ASSESSMENT

Causality Conclusions

The committee concludes that the evidence favors rejection of a causal relationship between thimerosal-containing vaccines and autism.

The committee concludes that the evidence favors rejection of a causal relationship between MMR vaccine and autism.

Biological Mechanisms Conclusions

In the absence of experimental or human evidence that vaccination (either the MMR vaccine or the preservative thimerosal) affects metabolic, developmental, immune, or other physiological or molecular mechanisms that are causally related to the development of autism, the committee concludes that the hypotheses generated to date are theoretical only.

SIGNIFICANCE ASSESSMENT

The committee concludes that because autism can be such a devastating disease, any speculation that links vaccines and autism means that this is a significant issue.

PUBLIC HEALTH RESPONSE RECOMMENDATIONS

The committee recommends a public health response that fully supports an array of vaccine safety activities. In addition the committee recommends that available funding for autism research be channeled to the most promising areas.

Policy Review

At this time, the committee does not recommend a policy review of the licensure of MMR vaccine or of the current schedule and recommendations for the administration of the MMR vaccine.

At this time, the committee does not recommend a policy review of the current schedule and recommendations for the administration of routine childhood vaccines based on hypotheses regarding thimerosal and autism.

Given the lack of direct evidence for a biological mechanism and the fact that all well-designed epidemiological studies provide evidence of no association between thimerosal and autism, the committee recommends that cost-benefit assessments regarding the use of thimerosal-containing versus thimerosal-free vaccines and other biological or pharmaceutical products, whether in the United States or other countries, should not include autism as a potential risk.

The above recommendations appear to support Dr. Healy's statements that the IOM expressly discouraged research and investigation of a possible vaccine/thimerosal link to autism and that the IOM report authors did so because of fear of vaccination rejection by the general population. As the above quote indicates the recommendation was based on epidemiological studies.

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Fomer NIH Head Says Question of Whether Vaccines Cause Autism Has Not Been Answered

Dr. Bernadine Healy, former head of the US National Institutes of Health, has claimed in an interview with CBS News that the question of whether there is a causal connection between vaccines and autism has not yet been answered. There is not yet enough evidence to say that there is no causal connection.

Dr . Healy notes that there have been no major studies of autistic children who developed autistic symptoms shortly after vaccination to see if there is such a connection. Animal Lab tests on mice and primates showing concerns about mercury and vaccine preservatives have been disregarded. Population studies do not test causation the indicate associations. Controlled lab studies are required. Dr. Healy also indicates that an Institute of Medicine (IOM) report in 2004 discouraged investigation of a possible link between susceptibility groups, autism and vaccines. Dr. Healy claims that the IOM report expressed a concern that pursuing the vaccine autism hypothesis would scare the public.

"I think that the public health officials have been too quick to dismiss the hypothesis as irrational," Healy said.

"But public health officials have been saying they know, they've been implying to the public there's enough evidence and they know it's not causal," Attkisson said.

"I think you can't say that," Healy said. "You can't say that."

CBS News has learned the government has paid more than 1,300 brain injury claims in vaccine court since 1988, but is not studying those cases or tracking how many of them resulted in autism.






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