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.

autism

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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Autism, Abby and ABA at the Shape of Behavior

In Facility is changing world for autistic children Lucretia Fernandez of the The Courier of Montgomery County, Texas tells the story ofAbby who, as a three year old was diagnosed with autism. Abby had difficulty sitting at a table to color a picture, participating in preschool or daycare activities. After being diagnosed with autism her parents immediately sought help for Abby and enrolled her at the Shape of Behavior. An individual ABA program was designed for ABA and within two weeks she was sitting at the table. After six months of intervention Abby was able to go to preschool where she has completed her first month.

The Shape of Behavior is a Houston, Texas facility with six locations. It's web site states that it provides individualized data-based treatment for children with autism and other developmental disorders "by shaping small successes to improve the quality of life for all individuals". The facility also conducts conduct research in the area of Applied Behavior Analysis. The Shape of Behavior web site contains information about its staff qualifications, locations, therapy clips, and a concise list of the characteristics of of Behavior Analytic Treatment:


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.

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Autism Hunger Strike While We Are Warm At Home Eating Supper

"When you were warm at home, eating supper last night, he was alone, at Queen's Park, shivering in the pouring rain"

- Paul Bliss, CTV News, reporting on Day 4 of Stephan Marinoiu's Hunger Strike for Autism.

Today is now Day 9 of Stephan Marinoiu's Hunger Strike for Autism. Although the strike is taking place near the Ontario Legislature Stephan is also asking the federal government to provide funding for autism treatment. The following video of the CTV report was posted on Youtube by OntarioAutism:

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Autism Hunger Strike - Canadian Press Report

Canadian Press has reported on the Autism Hunger Strike being carried on by Stefan Marinoiu outside Queen's Park in Toronto. Stefan has done an incredible job, once again, in bringing public attention to the needs of autistic children in Ontario. He has a press conference scheduled for tomorrow morning. People should get out and support Stefan tomorrow.

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:

1. emphasized skill development through positive reinforcement;
2. 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;
3. addressed all skill domains;
4. used frequent direct observation and measurement of individual performance to determine if progress was occurring, and adjust instructional methods accordingly;
5. included parents as co-therapists; and
6. 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."
   

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Autism Hunger Strike Comment by Julia Munro MPP York-Simcoe

ONTARIO LEGISLATURE - MAY 8, 2008

MEMBERS' STATEMENTS

AUTISM TREATMENT

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

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Stefan Marinoiu Autism Hunger Strike - Day 7

Torontoist Photos, May 10 2008

Today is May 11, 2008 and Stefan Marinoiu is continuing the Autism Hunger Strike that he began on May 5 outside Queen's Park in Toronto. If the decision was mine to make I would end Stefan's hunger strike now. With his existing diabetes condition Stefan's health is at serious risk. But the decision is not mine to make. The decision is Stefan's and he showed during his 11 day Autism Winter Trek that he is a very gutsy and determined individual. I spoke with Stefan very briefly by cell phone yesterday. I expressed my admiration for what he is doing but I also asked him if he would consider setting an end date for his hunger strike. Stefan answered that he would end his strike when something is done to help autistic people.

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.

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Autism Hero Stefan Marinoiu's Hunger Strike For Autism Now

There are many ways parents and other concerned citizens can advocate for health, treatment, education and residential services for autistic children and adults. Some join organizations, hold awareness meetings with government, business and the public, write letters to the editor and so on. Stefan Marinoiu of Toronto, who I met a couple of weeks ago during the recent Medicare for Autism Campaign NOW! visit to Toronto and Oakville, goes much further. Stefan has put it all on the line advocating for autism. And he is doing it again, right now. Stefan began a hunger strike for autism on May 5 outside Queen's Park in Toronto.

This winter Stefan walked for 11 days, over more than 200 miles, from Toronto to Ottawa, in the middle of a tough Canadian winter, blizzards and all, in an effort to meet Alleged Health Minister Tony Clement to ask the Canadian government to do something to help autistic people in Canada. He was traveling on foot with no warm trailer to retire to at the end of the day or if things got rough. With his winter autism trek Stefan literally put his life on the line advocating for autism change. Stefan got a 15 minute meeting with Minister Clement who said very little of substance. While the alleged federal Health Minister was not moved by Stefan's efforts parents of autistic loved ones across Canada were very moved. It was a privilege for me to meet Stefan in Toronto and Oakville. He is a genuine and compassionate person and has a great family.

Stefan's daughter Lia has started a Facebook group HUNGERSTRIKE for AUTISM NOW on which you will find updates and information about Stefan's Hunger Strike for Autism Now. As Lia points out her father is a type-2 diabetic. His hunger strike again poses serious risks to Stefan's health. Stefan's willingness to put it on the line for autism is a reflection of his tremendous personal courage and his strong convictions. It also reflects his frustration with the lack of help for autistic people like his son, 15 year old Simon, as shown in this Toronto Sun video:

I hope that Stefan takes care of himself as he tries again to impress upon government and public decision makers the impact that autism is having on autistic persons and their families and the need to take serious action to address Canada's autism crisis.

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Buddies Forever

Parents advocating for our autistic children are occasionally lectured and told that we must stop trying to "change" our children. We must learn to accept our children's autism and find joy - in their autism. I do not find joy in Conor's autistic disorder which presents him with serious challenges now and for the future. But I find great joy and comfort in Conor himself. And it takes no effort on my part. Conor is a happy and loving boy. And lots of fun.

During the Fredericton Flood, now receding, sleep was hard to come by as we stayed on top of the basement flooding wth sump pump, shop vac and buckets. Above Dad tries to get some rest on the couch. Conor, stimmer straw and all, decides to pay a visit.

Buddies forever.

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Autism Causation - Back to Bettelheim?

A recent study of mental illnesses amongst parents of autistic children provides some ominous echos of Bruno Bettelheim. The study, “Parental psychiatric disorders associated with autism spectrum disorders in the offspring,” appears in the May 5, 2008, issue of the journal Pediatrics. The authors gathered data from Swedish medical and hospital registers of children with autism diagnoses before 10 years of age and matched with a control population. Parent diagnoses were based on an inpatient hospital diagnostic evaluation and included schizophrenia, other nonaffective psychoses, affective disorders, neurotic and personality disorders and other nonpsychotic disorders, alcohol and drug addiction and abuse, and autism.

The study found that "for both parents, schizophrenia was associated with autism. For other disorders, such as depression and nonpsychotic personality disorders, the positive association between psychiatric disorders and childhood autism was found only for maternal disorders, not for paternal disorders."

The authors concluded that the study results results ^"support the hypothesis that there is a familial predisposition, perhaps genetic, that presents differently in the parent than in the child and probably requires a constellation of other genetic or environmental factors for expression."

The authors of the study themselves note a number of study design limitations but it should be interesting to see the reaction to the authors' conclusions. In pointing to a connection between autism and parental mental issues, particularly the association between autism and maternal depression and nonpsychotic personality disorders, the authors appear to be retracing the steps taken by Bruno Bettelheim whose "refrigerator mothers" theories of autism causality caused so much harm to families with autistic children. Hopefully this study and the conclusions arising therefrom, will be given as much rigorous study and discussion as others pointing to possible causes of autism.

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Autism Hero - Florida House Speaker Marco Rubio

Florida House Speaker Rep. Marco Rubio

"If this issue is about anything else, anything else -- taxes, anything -- I would tell you: 'Don't do it. Let's give it back and do it right and get it completely right.' But it has to do with children and with families. I think we need to take a step forward.''

- Florida House Speaker Rep. Marco Rubio

In the above quote Florida House Speaker Rep. Marco Rubio explained why he recommended against further debate on the Steven A. Geller Autism Coverage Act requiring all private insurance groups in Florida to cover autism medical aid. As reported by UPI the proposed Act could have been slowed by further debate concerning coverage of other disabilities.

It is refreshing to see a political leader who understands the urgency, and the need, to take action to provide medical coverage for autism.

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Fredericton Flood 2008 - May 2

Pics from downtown Fredericton, May 2, 2008, the day the water crested.

Autism, Conor and the Fredericton Flood 2008

Fredericton has been hit by some serious flooding. The pictures above are taken in Nashwaaksis, the area where we live in Fredericton. We have done fine. Lots of water coming into the basement but nothing we couldn't handle (so far) with buckets, a Shop Vac, a sump pump and some sleep deprivation. With a disrupted routine and lots of commotion, which are often difficult for children with Autism, we were concerned about how Conor would react. We needn't have worried. Dad has been home because of the flood and I have hung out with my buddy when possible. Which is lots of fun for me too. With everything under control with a new sump pump Dad and Conor went walking again to one of Conor's favorite spots, the Circle Place, as we call the Lawrence Amphitheatre. Today though we arrived to find the Circle Place almost flooded over. Conor surveyed the situation and decided to have fun anyway!

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Autistic Children "Rotting On The Vine" In Ontario - Why Not Consider "the New Brunswick Autism Model"?

In Wait list for autism therapy growing, critics charge the Star.com reports that "the wait list of autistic children who are eligible to receive intensive behavioural intervention therapy, or IBI, reached 1,148 on March 31, up from 985 last year." NDP critics argue that the government is moving at a slow, even glacial, pace resulting in many children "rotting on the vine" in the words of NDP critic Andrea Horwath who was also quoting parents she had met at a town hall meeting. The article describes spending increases by the McGuinty government but does not really describe a plan for getting children off the autism wait lists.

When I was in Ontario last week, as part of the Medicare for Autism NOW! campaign, I had the privilege of meeting some Ontario parents and discussing autism realities in Ontario. I heard of autistic children facing bureaucratic obstacles, waiting on lists for treatment only to "age out" before receiving treatment; or after just getting started. I mentioned the New Brunswick autism model as one that Ontario might want to consider.

In New Brunswick autism services are far from perfect but we have come far with the effort of determined parents, a sympathetic public and ... responsive political leaders. We have also been fortunate that political leaders of both major political parties in New Brunswick, aside from some exceptions, have tended to be genuine in their desire to help autistic children. So what is "the New Brunswick autism service model" and why is it working? (Yes, there are problems and the need to continually improve but generally we are much better off than Ontario.)

The key to "the New Brunswick autism model" is the University of New Brunswick Autism Intervention Training program offered through UNB's College of Extended Learning. The program provides training for autism support workers and clinical supervisors to provide evidence based interventions to children with autism during the pre-school years. Those interventions are provided by agencies which must be approved by the Department of Social Development and must be accountable for the quality of the services provided. The UNB-CEL AIT has also begun providing similar training to teacher/education aides and resource teachers. We are no longer debating whether ABA can be provided in New Brunswick schools as they are in Ontario. Here it has been happening. My son, Conor, has received ABA based instruction for the past 4 years. The teacher aides providing the instruction in school have been trained at UNB-CEL Autism Intervention Training program. While Discrete Trial Training is used for academic instruction, more general ABA principles are also employed in settings such as the school gym.

The UNB-CEL AIT program began as a response to a call for tenders by the Department of Family and Community Services (now the Department of Social Development) to provide pre-school autism intervention services in New Brunswick. It began, literally, at a meeting of the proposed UNB Autism Centre committee of which I was a member. Asked whether the College of Extended Learning could be of assistance Anne Higgins director of professional development at UNB-CEL listed the administrative milestones that would have to be met. Then, like few people I have ever seen, she and her team at UNB-CEL got the things done to meet those targets. The curriculum and instruction quality were overseen and assured by Clinical Psychologist and Professor Emeritus (Psychology) Paul McDonnell. With other Autism Society and parent reps on the committee we saw the program established from the outset and have complete confidence in the quality and integrity of the program. The program is continually evolving with input from the Departments of Social Development and Education and from the autism community.

A couple of years ago I was offered employment in the Toronto area with a labour organization whose leadership I had already worked with. It was really a dream job but I turned it down. In part because I grew up attending as many as three schools in one year as an "army brat" and my two sons had both had the opportunity to attend the same grade school and middle school without moving from place to place. But the biggest reason for not wanting to move was the fact that Conor was receiving ABA based school instruction from an aide trained at UNB-CEL using programs designed and overseen by a teacher who had received the Clinical Supervisor training at UNB-CEL. He has now had almost 4 years of such education and I am glad, for his sake, I decided to stay in New Brunswick.

I don't know if the Ontario bureaucrats would consider developing the New Brunswick model in Ontario for pre-school and school age children. Nor do I know if parents would want that. In Ontario they seem hung up on the IBI versus ABA labels a distinction without a real difference. But if autistic children are "rotting on the vine" in Ontario they might want to at least take a look at what we have done right here in New Brunswick.

If the people in Ontario are interested in what has happened in New Brunswick they might want to consider the CAUCE 2008 sessions, session five, on May 30 at the University of Western Ontario. Anne Higgins and Sheila Burt from UNB-CEL Autism Intervention Training will be participating and speaking about the pivotal role of UNB-CEL in providing multi-partnered, systematized autism intervention services.

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RDI Is NOT an Evidence Based Intervention

In New Brunswick several years ago there was little in the way of autism specific services. An interdepartmental committee comprised of representatives of the Departments of Family and Community Services (Now called Social Development), Education and Health, the "IDC", some autism "community" representatives and some professionals met for 18 months before issuing a report which stated that obvious fact. The failure of the IDC Committee, publicly at least, to discuss the need for autism treatments and to identify treatments that should be offered to autistic children in New Brunswick, is what prompted me to become publicly involved in autism advocacy in New Brunswick. One positive development that came out of the IDC review though was a commitment by the New Brunswick government to evidence based treatments.

That commitment to evidence based interventions is of critical importance for New Brunswick's autistic children and youth and has been largely honored since then by the Province of New Brunswick. There is, however, despite the existence of a high quality autism intervention training program at UNB, persistent pressure from some pockets, particularly in the Saint John and St. Andrews areas, to employ non-evidence based interventions with autistic pre-schoolers and students. In Saint John in particular, the "anything but ABA" sentiments of some influential people in the autism "community" have resulted in negative and inaccurate perceptions of ABA amongst some parents busy with the demands of child raising, dealing with their children's autism and, like all of us, struggling to get by. At the same time the "anything but ABA" group tends to promote any intervention with a nice sounding name that looks fun on its face, anything as long as it is not ABA.

The intervention which is currently in vogue amongst New Brunswick's "anything but ABA" lobby is RDI. RDI sounds so nice - Relationship Development Intervention. After all how can one possibly be against "Relationship Development"? And it is an "Intervention"! It sounds so professional it must be evidence based right? Well no, not really.

One of the leading reviews of the evidence basis of the effectiveness of autism interventions is the MADSEC Autism Task Force Report which reviewed the professional literature in 1999-2000 and concluded at pages 60-61:

Based upon a thorough examination of numerous methodologies considered as interventions
for children with autism, the MADSEC Autism Task Force has characterized the interventions
reviewed as follows:

• Substantiated as effective, based upon the scope and quality of research:
Applied behavior analysis. In addition, applied behavior analysis’ evaluative procedures are effective not only with behaviorally-based interventions, but also for the systematic
evaluation of the efficacy of any intervention intended to affect individual learning and
behavior. ABA’s emphasis on functional assessment and positive behavioral support will
help meet heightened standards of IDEA ‘97. Its emphasis on measurable goals and reliable
data collection will substantiate the child’s progress in the event of due process.

• Shows promise, but is not yet objectively substantiated as effective for individuals with autism using controlled studies and subject to the rigors of good science:
Auditory Integration Training, The Miller Method, Sensory Integration, and TEACCH.

• Repeatedly subjected to the rigors of science, which leads numerous researchers to conclude the intervention is not effective, may be harmful, or may lead to unintended consequences:
Facilitated Communication.

• Not scientifically evaluated:
Greenspan’s DIR/”Floor Time,” Son-Rise.

There is no mention of RDI in the 1999-2000 MADSEC review but RDI has emerged more prominently since then in autism workshops offered in New Brunswick and elsewhere and there has been another important and more recent review of the scientific studies of the effectiveness of autism interventions - the American Academy of Pediatrics report Management of Children With Autism Spectrum Disorders published online October 29, 2007. The AAP concluded, at page 1165m with respect to the evidence basis of RDI that:

RDI focuses on activities that elicit interactive behaviors with the goal of engaging the child in a social relationship so that he or she discovers the value of positive interpersonal activity and becomes more motivated to learn the skills necessary to sustain these relationships.56 Some reviewers have praised the face validity of this model, which targets the core impairment
in social reciprocity. However, the evidence of efficacy of RDI is anecdotal; published empirical scientific research is lacking at this time.

(Bold highlighting added for emphasis -HLD)

If a reader wants to understand how weak the evidence in support of RDI effectiveness is, as summarized by the AAP above, they can compare it to the AAP summary, at page 1164, of the evidence in support of effectiveness of ABA:

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

When the New Brunswick government committed to evidence based approaches to treating and educating autistic children it adopted a very sound policy which has helped many autistic children. Even in Saint John where the "anything but ABA" sentiment has been strongest, autistic children receive evidence based intervention at the Stepping Stones autism agency. But why is it important to provide evidence based interventions?

In Children with autism deserve evidence-based intervention, The evidence for behavioural therapy, MJA 2003; 178 (9): 424-425, Jennifer J Couper and Amanda J Sampson, reviewed some of the evidence in support of the efficacy of behavioral interventions for autism. The authors stressed the importance of an evidence based approach to autism interventions:

While ineffective therapies may be harmless, they waste parents' money and the child's valuable therapy time. Furthermore, the delay in implementing effective treatment may compromise the child's outcome.

The choice of autism interventions offered by New Brunswick autism agencies should be determined by the evidence basis in support of their effectiveness. Failure to provide evidence based effective autism interventions may compromise the outcome for children with autism disorders in New Brunswick.

Autistic children deserve evidence based intervention.

At this time RDI does not meet that standard.

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Autism As Disability and Disorder - NOT Deviance

Leave it to Estee Klar-Wolfond host of "The Joy of Autism" to get it wrong again. This self appointed expert on autism actually celebrates autism - a disorder which impairs and restricts the lives of many with Autistic Disorder. And her absurd views of autism are reflected in her response to the speech by Reverend Jeremiah Wright to the NAACP.

In my son's case he can not be left unattended at any time. He can not be left to wander to the end of our neighborhood street unaccompanied without risking his life. Yet this person lectures parents like me that we should find joy in our children's disability. I can not hide my lack of respect for her point of view. It is sheer and utter nonsense and I will not pretend otherwise. Whenever I read of an autistic child gone missing, sometimes thankfully returned to safety, sometimes not, I think of this person's perverse ideology which celebrates disability as something joyful. I am not surprised Estee Klar-Wolfond would seize on Rev. Wright's remarks as she has in her comment titled "Difference Is Not Deviance". Here is a big tip for Ms Klar-Wolfond. I know of no single person who accuses autistic people of being deviants. Not one.

Ms Klar-Wolfond takes issue with other parents who describe their children as ill. Like many who subscribe to the Neurodiversity Ideology that worships autism as a culture or way of life Ms Klar-Wolfond takes exception to those who describe autistic disorder as a ... disorder, a disability, or a disease. What Ms Klar-Wolfond and other ND adherents ignore are the hard realities of autistic children, like my son, who can not walk to the end of our neighborhood street alone for fear of serious injury or death. Nor do they talk much about the autistic persons who hurt themselves even causing brain injury or starve themselves. It is easy to see autism as a joy as Ms Klar-Wolfond does when you simply ignore the unpleasant realities lived by some persons with autism and hang out on the internet with some high functioning persons who write great essays and appear before courts and parliamentary bodies.

Here is another little tip for Ms K-W and the rest of the ND ideologues. If someone is called autistic it is because they have received a medical diagnosis that they have one of the Pervasive Developmental Disorders. They would not have acquired such a diagnosis if everything was joy and bliss in their lives. They acquire such diagnoses, most often as children, because of serious language delay and other serious developmental and behavioral problems. Joy? Not at all. Deviance? No, not that either. Autism is a disorder and a disability and it is also called a disease by medical professionals whose opinions were sought by parents in respect of their children.

Ms Klar-Wolfond is "happy to announce" that she is "a new graduate student of Critical Disability Studies at York University". Congratulations to Ms Klar-Wolfond on acquiring entrance to another university degree granting program. Hopefully the learned professors who mentor Ms Klar-Wolfond will understand that race and religion may not be the most apt comparisons for disorders and disabilities. People of different races and religions suffer when people create obstacles and hardships for them because of their differences. Their races and religions impose no restrictions or impairments on their lives.

People with disabilities and disorders suffer when the physical world, genetic and environmental, create obstacles and hardships for them. Their own disorders and disabilities do in fact impose restrictions and impairments on their lives. Therein lie the "differences" between race and religion on the one hand and disability and disorder on the other. Hopefully the professors and mentors at the York University Critical Disabilities graduate studies program understand these distinctions even if Ms Klar-Wolfond does not.

My son is diagnosed as having Autistic Disorder, assessed with profound developmental delays. He has a disorder, a disability. He is not thereby deviant. And it is silly to suggest that anyone in the real world equates autism with deviance.

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