Saturday, May 31, 2008
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!
autism
Thursday, May 29, 2008
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.
Autism Awareness: Run the Dream in Fredericton on June 5, 2008
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.
autism
Tuesday, May 27, 2008
Autism Media Breakthrough
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.
Monday, May 26, 2008
Alleged Autism Rights Movement and Severe Autism: Autistic Boy Goes Missing, Struck and Killed by Train
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.
autism
Saturday, May 24, 2008
Autism Treatment and Autism Advocacy in Canada: God Bless America!
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!
autism
Thursday, May 22, 2008
A Questionable Autism Partnership, 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.
Wednesday, May 21, 2008
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
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
autism
Tuesday, May 20, 2008
Autism Hunger Strike Has Ended
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.
autism
Monday, May 19, 2008
Professor Pushes Prozac for Autistic Children in the UK
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?
autism
Autism and the Role of Neurologists
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 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.
Sunday, May 18, 2008
Autism Reality - Missing Autistic Girl Found Safe in Michigan
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.
autism
Saturday, May 17, 2008
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.
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.
Friday, May 16, 2008
New Brunswick Autism Service Delivery Model At ABA International Symposium in Chicago, May 23-28
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)
autism
Thursday, May 15, 2008
Autism and Human Rights in Canada
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.
Declaration on the Rights of Disabled Persons
Proclaimed by General Assembly resolution 3447 (XXX) of 9 December 1975
The General Assembly,
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.
Wednesday, May 14, 2008
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.
autism
Fomer NIH Head Says Question of Whether Vaccines Cause Autism Has Not Been Answered
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.
autism
Autism, Abby and ABA at the Shape of Behavior
Characteristics of Behavior Analytic Treatment
• Treatment that is individualized
• Treatment that is empirically validated
• Treatment that measure behavior and learning
through direct observation
• Functional analysis of the causes of behavior
• Emphasis on using positive reinforcement
to increase desirable behavior
• Technological procedures that can be replicated
• Achievements are described in scientific terms
or the principles of learning
• Practical significance in the improvement
for the individual child and not just
statistical improvement
• Creating improvements that last over time
and in new places where appropriate
Abby's parents sought help immediately upon learning of their child's diagnosis. The help they obtained, ABA treatment, has been thoroughly studied for decades and shown to provide real and lasting gains for autistic children. Parents of newly diagnosed autistic children would do well to follow a similar path, and take action to help their children learn, develop and live life as fully as possible.
Tuesday, May 13, 2008
Autism Hunger Strike While We Are Warm At Home Eating Supper
- Paul Bliss, CTV News, reporting on Day 4 of Stephan Marinoiu's Hunger Strike for Autism.
autism
Monday, May 12, 2008
Autism Hunger Strike - Canadian Press Report
I don't know if my advice will be heeded but I hope Stefan has a time line in mind to bring this Hunger Strike to an end. Autistic children in Canada need a strong advocate like Stefan but they need him, more than his memory, to help them.
CP : TORONTO — A Toronto man who has been on a hunger strike for over a week is demanding the province eliminate the backlog of autistic children waiting for a crucial but costly therapy.
Stefan Marinoiu, 49, will call on the government Tuesday to move more quickly to provide treatment for children with autism, including his teenage son.
He wants to see the wait list of more than 1,100 autistic children who are eligible to receive intensive behavioural intervention therapy, or IBI, eliminated by November.
Marinoiu also wants the province to commit to providing the treatment in schools no later than September next year.
Education Minister Kathleen Wynne says thousands of people have already been trained to provide another kind of therapy, called applied behavioural analysis, in schools.
She says some schools have therapists to provide the more intensive IBI therapy, but not in regular classrooms.
On another note, I have trouble understanding this great debate in Ontario about IBI versus ABA as those expressions are used by Education Minister Wynne and others, including parents, in Ontario. Intensive Behavioral Intervention IS ABA. It just refers, to the intensity - the number of hours per week of intervention. If it is provided to children between two and five it is typically referred to as Early Intensive Behavioral Intervention. But it still remains ABA. See Autism and ABA EIBI Saves Up to $2,500,000 SUMMARY: Cost-benefit Estimates for Early Intensive Behavioral Intervention for Young Children with Autism John W. Jacobson,James A. Mulick,and Gina GreenIn Behavioral Interventions, 1998, Volume 13, 201-226 :
" Early Intensive Behavioral Intervention (EIBI)
Studies have demonstrated that intensive early intervention using the principles and methods of applied behavior analysis (ABA) can produce substantial benefits for many children with autism/PDD (Anderson et al., 1987; Birnbrauer & Leach, 1993; Fenske et al., 1985; Lovaas, 1987; McEachin, Smith, & Lovaas, 1993). Although there were some variations in procedures across studies, the interventions generally met the five criteria listed as essential by Guralnick (1998) and Ramey and Ramey (1998).
The interventions:
- emphasized skill development through positive reinforcement;
- started with an assessment of each child's current skills and deficits; instructional objectives, teaching methods, pacing, skill sequences, and reinforcers were all customized to the characteristics and needs of each child;
- addressed all skill domains;
- used frequent direct observation and measurement of individual performance to determine if progress was occurring, and adjust instructional methods accordingly;
- included parents as co-therapists; and
- were directed and supervised by individuals with postgraduate training in behavior analysis plus extensive hands-on experience in providing ABA intervention to young children with autism."
Autism Hunger Strike Comment by Julia Munro MPP York-Simcoe
MEMBERS' STATEMENTS
Mrs. Julia Munro : "This morning, just in front of Queen's Park, I met with Stefan Marinoiu. Since Sunday, he has been on a hunger strike demanding that this government take action on autism. Stefan is out in front of this building because he has an autistic son and he wants his son to receive the treatment he needs." "Yesterday, to her credit, the Minister of Children and Youth Services came out and met with Stefan. Now it is up to her to talk to the Premier and the Minister of Finance and find the money to meet the needs of autistic children like Stefan's son." "I asked Mr. Marinoiu twice to give up his hunger strike, but both times he said no. It is not good for his health, but he is out there today because of his love for his son and because the government will not help him." "No one would go on a hunger strike unless they were desperate. Families whose autistic children have been left to linger on waiting lists are desperate. They need your help, and it is time for you to do something."
- Julia Munro, MPP York-Simcoe, as reported on Yesterday at Queen's Park
autism
Sunday, May 11, 2008
Stefan Marinoiu Autism Hunger Strike - Day 7
Stefan has a 15 year old son who is autistic and who received no autism specific treatment or education services. Stefan wants to help his son and others with autism. A Friday May 9 video update can be viewed on the Hungerstrike For Autism Now Facebook group. In the video Stefan outlines 3 goals he wishes to accomplish for autsm:
1) Get rid of the waiting lists for autism treatment in Ontario by November;
2) Have ABA by professionally trained people in the schools by September 2008;
3) A federal commitment to national guidelines and financing for autism treatment and an autism agency within the federal health care system.
These are not impossible goals. As Jean Lewis of FEAT-BC and Medicare for Autism NOW! said about amending Canada's national Health Care Act to include autism treatment - all it takes is political will.
The first two goals on Stefan's list have been implemented, or begun to be implemented already in New Brunswick. Training is critical. New Brunswick has been training autism support workers, clinical supervisors, teacher assistants and resource teachers for several years at the University of New Brunswick College of Extended Learning Autism Intervention Training program. Preschool autism treatment is provided through authorized agencies monitored by government. Trained teacher assistants have begun providing ABA in New Brunswick schools. My son Conor has been receiving ABA based instruction by a UNB-CEL Autism trained TA with plans and supervision by resource teachers and mentors trained at UNB-CEL for the past 4 years. If New Brunswick can make substantial progress towards helping autistic children why can't Ontario?
The drive for a National Autism Strategy has also been underway for several years. Two members' motions have received substantial support from Members of Parliament. But a commitment by a governing party is required to get Canada to face up to its responsibilities toward autistic people and provide financing to the provinces for autism treatment. The Conservative government of Stephen Harper will never make that step. That is clear from everything ever written by Harper and it will not change. The NDP has provided great support in the person of MP Peter Stoffer and others but have never come close to taking power federally in Canada. Only the Liberal Party can form the government and despite the very considerable support of Liberal MP's and Liberal Senator Jim Munson the Liberal Party has still not committed to implementing amendments to include autism treatment in Canada's national health care legislation.
Hopefully political leaders in Ontario, Ottawa and elsewhere in Canada will find the will to help autistic children and adults in Canada. If they are not sure what "willpower" looks like they might watch Stefan Marinoiu outside Queen's Park in Toronto.
In the meantime I hope Stefan takes care of himself and those who are with him help him keep a close eye on his health.
autism