Autism Research Ethics - Is It Ethical to Deny ABA to Autistic Infants for Research Purposes?

The AP is reporting several new autism research projects aimed at studying early clues of autism and other disorders. One such study mentioned is by Dr. Stanley Greenspan which, according to the AP report, will involve two groups of infants - One group will receive intensive behavior training, the other will not; both will be compared through age 5. But is it ethical to deny ABA intervention to infants who are diagnosed or suspected to have an Autism Spectrum Disorder for research purposes?

An opinion peace in the Medical Journal of Australia Children with autism deserve evidence-based intervention The evidence for behavioural therapy MJA Vol 178 5 May 2003 424, Jennifer J Couper Head, Endocrinology and Diabetes Centre, Women's and Children's Hospital, North Adelaide, and University of Adelaide, SA and Amanda J Sampson Ultrasonologist Royal Women’s Hospital, Carlton, VIC reviewed the impressive body of research that existed in 2003 in support of the effectiveness of ABA as an autism treatment. The authors noted "that 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.".

Since the MJA editorial piece there have been more studies confirming the efficacy of ABA as an autism intervention or treatment. How can a study which denies ABA treatment to autistic infants during the critical 2-5 year age period meet ethical standards in light of ABA's demonstrated evidence based effectiveness in treating autism? As Couper and Sampson noted ineffective therapies waste parents' money and valuable therapy time. Hopefully, at the very least the parents of infants in the control group, the infants not receiving ABA, have been informed that there are literally hundreds of studies demonstrating the effectiveness of ABA as an autism intervention. Hopefully they will have been told before agreeing to deny ABA treatment to their children that state, academic and professional bodies around the world have consistently concluded that ABA stands alone as the most solidly supported, evidence based treatment for autism to this day.


RESEARCH ON AUTISM IN INFANTS
Associated Press
Article Launched: 05/21/2007 01:31:53 AM PDT

AUTISM AND INFANTS

Research on identifying early clues of autism and other disorders and testing treatments is booming. Here are some of the doctors and researchers involved:

Dr. Fred Volkmar at Yale University is studying potential ways to diagnose autism in the first months of life, including whether looking at objects rather than people is a sign. "I think we're on the verge of being able to do a much better job" of diagnosing autism in infancy, Volkmar said.

Researcher Stephen Porges at the University of Illinois at Chicago is starting a five-year study of whether excessive crying past 6 months of age might be an early sign of autism, attention deficit or other behavioral problems.

Dr. Stanley Greenspan, a psychiatry professor at George Washington University, is launching a multimillion-dollar study involving parents and babies at risk for autism or attention deficit disorder. One group will receive intensive behavior training, the other will not; both will be compared through age 5.

http://www.mercurynews.com/news/ci_5946767

Autism Symposium Cancelled - Harper's Book of Dirty Tricks Page 2

The Harper Conservative government strategy to address the Autism health crisis in Canada is beyond pathetic; it is wretched. It is nothing more than a ploy from the now infamous Conservative Party Book of Dirty Tricks.

The Harper Conservatives' autism strategy was announced in November 2006 by Health Minister Tony Clement and consisted of a web page and a stakeholder symposium to be held in 2007. Yes there were other elements - sort of. A research chair was mentioned - sort of. The Harper conservatives pledged to begin exploring the establishment of a research chair focusing on effective treatment and intervention for ASD. They also pledged to launch a consultation process on the feasibility of developing an ASD surveillance program through the Public Health Agency of Canada (PHAC) to help shape appropriate ASD programming and research. I wonder which generation of Canadians will be around to see whether an ASD surveillance program, whatever that is, is determined to be feasible?

Of course there is the pledge to address Canada's autism health crisis by designating a bureaucracy within a bureacracy, the pledge to designate the Health Policy Branch of Health Canada as the ASD lead for actions related to ASD at the Federal Health Portfolio level. Health Canada itself of course is the federal government Department charged with responsibility over health matters which the Harper Conservatives tell us [ignoring the development over decades of cooperative federalism] is a matter entirely within provincial constitutional jurisdiction. Gee, the policy branch of the federal department responsible for a matter which the Conservatives claim is entirely within provincial jurisdiction will be designated as the lead branch of that department for actions related to ASD at the federal level. WOW!!

Then there is the autism web site promised by Health Minister Clement. Personally I believe it to be the least informative autism site on the internet. But that may be a bit harsh. There may be autism web sites that are still "under construction" and actually say nothing at all. Judge for yourself:

http://www.hc-sc.gc.ca/dc-ma/autism/index_e.html

Then there is the "stakeholders" symposium promised to be held in 2007. As one who has been an autism activist for the last 8 years in New Brunswick I recoil at the use of the word "stakeholder". It sounds like a property interest in a commercial transaction. I am an autism activist because of my profoundly autistic son. He, with his brother, are the joys of our life but they are not "stakes" in a poker game. And government typically defines the stakeholder concept broadly to include any group that might be useful in pushing the government's own agenda. Careful selection of a few stakeholder groups for government funding and support invariably results in useful tools for creating division and weakness in the disability community whose issues are being addressed, allowing government to divide, delay and deny provision of necessary services.

I was asked by the Autism Society New Brunswick to participate as the ASNB representative at the autism stakeholders symposium which was scheduled to take place mid-June 2007 in Ottawa. I contacted the Canadian Institute for Health Research to register for the event and was told that the federal government wanted the Autism Society Canada, the federal organization of which ANSB is a member, to forward the names of participants for the autism symposium. Thus the provincial body, the ASNB, could not forward names directly of representatives for a national symposium to address an issue which, according to Stephen Harper, Tony Clement and Edmonton area MP Mike "Bigfoot" Lake [Conservative Party autism spokesman and Autism Dad]is entirely within provincial jurisdiction. The Autism Society Canada put my name forward at the request of ASNB and I waited to receive my invitation. I had been told the invitations would be sent out two weeks ago. When I followed up last week I was informed by CIHR that the symposium was being discussed at a more senior level and that so many names were put forward that it was necessary to arrange a new larger location. In the meantime I had become aware that prominent, no nonsense autism activists like Andrew Kavchak in Ottawa and the FEAT-BC folks had also been put forward as participants in the national autism stakeholders symposium. Last week it was formally announced that the symposium was "postponed" to an unspecified date in the fall.

I do not believe the excuse that the Government of Canada could not find a large enough room to accommodate a national symposium of autism representatives by mid-June. The federal government is THE consumer of services for such activities in the National Capital Region and has a lot of purchasing/bargaining power. There is a substantial industry in the region which thrives on hosting such events and the capacity has been developed for these purposes. The federal government itself owns a good chunk of the national capital real estate and surely has the facility to itself host a symposium.

The Harper Conservative government became increasingly aware that activists such as yours truly, Andrew Kavchak, some FEAT-BC reps, and some of the family members involved in the Auton and Deskin-Wynberg autism cases were coming to Ottawa to participate in the national autism symposium and they wanted no part of it. That is the more plausible explanation for the postponement/cancellation of the symposium. The whole national autism "strategy" could have been lifted from page 1 of the Harper Book of Dirty Tricks recently exposed and which directs Conservative MP's to to obstruct the progress of parliamentary committees, including stacking such commitee proceedings with witnesses who would support the Harper Conservatives' agenda. The page was turned to page 2 when the only pledge of any merit, the national autism stakeholders symposium was "postponed" until the fall of 2007. IF the symposium does proceed in the fall you can be sure that every effort will be made by the party of Harper and Clement to ensure that the voices of serious autism activists will not be present and will not be heard. As dictated in Harper's Book of Dirty Tricks only sponsored, docile autism representatives supportive of the Conservative Party agenda will be invited. ... Continued on Page 3, Harper's Book of Dirty Tricks.

Autism Speaks 400

Autism Speaks continues its outstanding efforts to raise autism awareness and funds for autism research with its latest effort the Autism Speaks 400. This is another terrific way to tell the world about autism.


NASCAR NEXTEL Cup Series Race at Dover International Speedway to be named the “Autism Speaks 400 Presented by Visa”
DOVER, DE (May 18, 2007) -- Dover International Speedway announced today that the June 3, 2007 NASCAR NEXTEL Cup Series race will be named the “Autism Speaks 400 presented by Visa.” Autism Speaks is an organization dedicated to increasing understanding and knowledge of autism spectrum disorders; to funding research into the causes, prevention, treatments and cure for autism; and to advocating for the needs of affected families.

“Thanks to Visa's commitment, this event marks the first time a NASCAR NEXTEL Cup event entitlement has been dedicated to a not-for-profit organization,” said Mark Rossi, vice president of sales & marketing for Dover Motorsports, Inc. “Millions of fans watching the race on Fox around the country, along with our loyal fan base here at the track in Dover, will be exposed to the ‘Autism Speaks 400 presented by Visa' messaging. The end result will be increased awareness, and additional funds, to assist the many important initiatives of Autism Speaks.”

From now until June 1, Dover International Speedway will donate $5 to Autism Speaks from each ticket purchased with a Visa card for the June 3 “Autism Speaks 400 presented by Visa” race. Fans can visit www.autismspeaks.org to learn more and donate to this worthwhile cause.

As part of the entitlement, a special one-of-a-kind experience will be auctioned, with all proceeds going directly to Autism Speaks. The prize includes the opportunity to wave the green flag as the honorary starter for the June 3 race; an autographed flag signed by the starting lineup of the NASCAR NEXTEL Cup Series race; the chance to be on stage for driver introductions; a ride in the pre-race parade lap for four guests; four tickets to watch the race from a skybox suite; four pit passes; and a guided tour for four of the NASCAR NEXTEL Cup garage. To participate in this unique auction and support Autism Speaks, go to
www.autismspeaks.org/dover400.

http://www.autismspeaks.org/press/dover_400.php

Autism & ABA- Irish Education Minister Spins Old, Flawed Argument

Minister for Education & Science, Mary Hanafin T.D.

In reading news today from Ireland I had a strong sense of deja vu. Irish Education Minister Mary Hanafin persists in rejecting calls for ABA based education for Irish students with autism. Her argument? There are several suitable forms of education that are available in Ireland. The article does not provide any quotes or indications of what these several suitable forms might be and the Minister was criticized by a professional member of her own government's autism task force. In New Brunswick our Department of Education used similar arguments for several years to resist provision of ABA based education for autistic students for several years. ABA is heavily documented as an effective evidence based approach to educating students with autism. The mysterious "several suitable forms" other than ABA have yet to be documented.


The Minister for Education is coming under fire from a leading expert over her approach to dealing with autism.

Minister Mary Hanafin has repeatedly rejected calls from parents for the introduction of the expensive Applied Behavioural Analysis method for teaching autistic children.

Doctors say it is the most effective method, but Ms Hanafin is continuing to insist that there are several suitable forms of education that are available in Ireland.

Dr Rita Honan, a member of the department's own task force on autism, has now come out and said that the approach advocated by Ms Hanafin has no scientific basis and ABA has been proven to be more successful than any other teaching programme.

She also says the minister's stance makes no financial sense as the expensive ABA programme can lead to substantial savings in the long run.

http://www.belfasttelegraph.co.uk/breaking-news/ireland/article2528459.ece

Autism Resource Centre in Moncton Received $29,000 From Conservative Government

Minister of Human Resources Monte Solberg stands in the House of Commons during question period Wednesday. He was peppered with questions about the Conservatives' changes to student job funding.
Politics Monte Solberg says Tory government is 'helping groups that need the help

The Toronto Star has reported the funding cuts for the I Can Now summer camp in Ontario but the New Brunswick Telegraph Journal is also reporting that the Harper government did provide $29,000 in funding to the Autism Resource Centre in Moncton, an increase of $20,000 over the previous year. The Telegraph Journal article report also includes accounts of 50 community groups in the Saint John area that were denied funding.

http://www.canadaeast.com/ce2/docroot/article.php?articleID=144982

Autism Supporter & Election Candidate - Stewart C. Paul (L) Tobique-Mactaquac

The current Conservative government of Stephen Harper, backed by the separatist Bloc Quebecois, voted down the Shawn Murphy motion to amend the Canada Health Act to ensure that autistic children, regardless of where they happened to live in Canada would receive government funded proven effective ABA treatment for their autism. The budget brought down by the Harper government gave $0 ZERO dollars for autism. Conservative MP's across Canada have marched in lockstep uniformity to deny federal government assistance for autism even elminating funds for a well respected autism summer camp in Ontario. The next election will be critical for the success of efforts to put in place a serious national autism strategy in Canada and it is important to identify and support candidates who are prepared to support a national autism strategy. One such candidate is Stewart C. Paul the Liberal candidate for Tobique-Mactaquac here in New Brunswick.

Stewart is a long time friend, and professional associate, who has been very supportive of my efforts on behalf of my son Conor and of the cause of autism generally. He has pledged to support a national autism strategy if elected and he has the background to know how to offer effective support on the national scene. Stewart Paul is the Liberal candidate for Tobique-Mactaquac and a supporter of the cause of autistic persons on the national scene in Ottawa. If you live in the Tobique-Mactaquac area and have an autistic child or know someone who is autistic or if you are yourself autistic remember Stewart Paul when you cast your ballot in the next federal election.

http://www.nblib.nb.ca/stewart_paul.html

Born and raised in the riding of Tobique – Mactaquac, in Tobique First Nation, Stewart Paul graduated from Perth High School, where he was active in student life and served as President of the Student Council.

As a young person, he was moved by the difficult social conditions and economic disparities evident in his home community, and developed an early interest in issues related to social justice, economic development, and education.

He attended the University of New Brunswick, where he took an undergraduate degree in arts (majoring in history and sociology), then a law degree. In addition to his BA and LLB degrees, he earned a Diploma in Social Leadership from the Coady Institute at St. Francis Xavier University. He is a 25-year member of the Canadian Bar Association and the Law Society of New Brunswick.

His first jobs were as an education consultant with the NB Department of Education in Fredericton, and as a Policy Analyst with the Assembly of First Nations in Ottawa. In the early 1980's, he co-founded the Mi’kmaq-Maliseet Institute in the Faculty of Education at the University of New Brunswick, a respected organization dedicated to the training and professional development of Native educators. He practiced law for several years in Fredericton before returning home in the late 1980's to enter political life. He served several terms as Chief of the Tobique First Nation during which time much about the community was transformed. He maintained a private law practice in Perth-Andover throughout this time and to the present day.He also presently serves as a member of the Board of Directors of Peace Hills Trust, a national financial institution. He has been married for 40 years. He and his wife, Sandra, have four children and nine grandchildren.

He brings experience to the table that spans job creation, education, health, natural resources, business development, and community infrastructure. He has strong skills related to leadership, management, and government administration. He has worked in regional and national policy development, and has experience with complex legal and financial negotiations. He is also familiar with Ottawa and the provincial government.

As a lifelong resident of Tobique-Mactaquac, he is committed to the entire region. He has been an active member of the Liberal party in this region for nearly 20 years, and he understands the challenges facing the region, and the aspirations of its people. He has much to offer, and would be a strong representative of the people in Ottawa. He is a seasoned political leader, a strong campaigner, and a hard worker.

He was nominated as the Liberal candidate for the Electoral District of Tobique – Mactaquac on April 28, 2007.

Ontario Rescues Autism Summer Camp from Harper Funding Cuts

The Liberal government of Ontario Premier Dalton McGuinty has stepped in to announce it would provide funding to ensure that a summer camp for autistic children remained open after it had been announced that the federal Conservative government of Stephen Harper was cutting funding for the camp. Stephen Harper cutting funding for autistic children? No surprise there.

Ontario rescues camp for autistic children

May 18, 2007 04:30 AM
bruce campion-smith
ottawa burea

OTTAWA–While a Toronto camp for autistic children will now go ahead this summer after Queen's Park came to the rescue, hundreds of other community projects across Canada are in doubt because they are being refused funding to hire students by the federal Conservatives.

...

But Ontario wasted no time yesterday in announcing it would help run the Yes I Can! camp.

Mary Anne Chambers, Ontario's minister of children and youth services, said she was moved to act after reading in yesterday's Star that Ottawa had rejected the camp's funding request.

"We will make sure that that summer camp continues for these kids," Chambers told the Legislature.

"We, the government of Ontario, will invest the $38,000 that they have lost in order to ensure that these kids can continue to have a summer camp," she said.

For more than a decade, the school has relied on federal funding to hire student counsellors to run a camp for up to 65 pre-schoolers with autism as well as low-income kids.

Janet MacDougall, the school's executive director, said she was grateful for the province's offer although she hadn't been given official word last night.

"I am so grateful they are coming to the party," MacDougall said.

She said the provincial cash was welcomed, especially since she's been pushing Queen's Park for three years to provide funding for her school.

MacDougall says she was overwhelmed by the response to the Star article, including calls from the offices of federal Liberal Leader Stéphane Dion, provincial Progressive Conservative Leader John Tory and countless Star readers, all keen to donate cash or offer their help to keep the camp open.

Bert Levy offered up $9,500 from the Orion Foundation, a charity that assists people with disabilities, to kickstart the community fundraising.

"They're stepping on the very weakest of our people. Makes you wonder," he said of Ottawa's decision to reject the funding request to help autistic kids."

http://www.thestar.com/News/article/215326

Good News from Ontario on Autism & Education - ABA in Ontario Schools

Good news for autistic students in Ontario. The government of Ontario is directing ALL school boards to provide Applied Behaviour Analysis to all students with autism.


TORONTO, May 17 /CNW/ - The McGuinty government is improving the learning environment for students with autism spectrum disorders by directing all school boards to provide Applied Behaviour Analysis (ABA), Education Minister Kathleen Wynne announced today.

"All students with autism deserve equal access to this vital teaching
approach that can improve their focus on individual projects and strengthen
their communication with other students in the classroom," said Wynne.
"We are implementing our plan to ensure students with autism receive the
best education possible."

The Ministry of Education instructed school boards today that they must
provide programs that use ABA methods to students who need it. This
directive is part of the government's response to the recommendations of
Autism Reference Group report, Making a Difference for Students with
Autism Spectrum Disorders in Ontario Schools: From Evidence to Action,
received earlier this year.

The implementation of ABA will be supported by extensive staff training
starting with six to eight representatives, including superintendents,
principals, teachers, teaching assistants, school support staff and Special
Education Advisory Committee members, from each school board over the
next two months. This will be followed by school team training - funded
through a $1-million investment - for up to 1,400 principals, educational
assistants and teachers over the summer months.

Additionally, the government has provided a grant of $2.75 million to
the Geneva Centre for Autism. "We are very grateful for the government's
support so we can provide further training on ABA approaches to school
staff in the fall," said Margaret Whelan, Executive Director of the Geneva
Centre for Autism. "This investment will allow educators to help more
students with autism succeed."

Autism Reality - The Truth, the Whole Truth, Must Be Told

Deborah Pugh is a journalist and mother of an autistic son who has been crticized for speaking publicly about her son's challenges, specifically his autism and the challenges presented by puberty. She has written an article on this subject in the Vancouver Sun which follows this comment. Puberty, like infancy and old age are merely stages which all humans, if they are fortunate, pass through on life's journey. Puberty, like these other stages, is nothing to be ashamed of and there should be no problem with discussing the challenges it presents in a respectful manner. Censoring discussion of such a subject is what creates shame and leads to an incomplete and distorted picture of the realities of someone with autism who is undergoing puberty.

Pete at "A Perfectly Cromulent Blog" has touched on the decision a parent must make - remain silent or advocate publicly with public comments about your autistic child. With this blog site I have obviously chosen to speak publicly about my son, Conor, his severe autism, the joys AND the challenges of living with and raising Conor, our hopes AND our fears for his future. A major reason for the user name I employ "AutismRealityNB" is my perception that the internet is full of joy of autism sites and sites about high functioning autistic persons who have the ability to host blog sites, write lenthgy essays, appear before government committees, intervene in court proceedings and otherwise function and communicate at a very high level. They are joined by some parents and professionsals who condemn parents like those in the Autism Every Day video who tell the whole truth of their child' autism realities. An uninformed reader of the Wikipedia List of People with Autism should be forgiven for thinking that autistic persons are all artists, poets, authors and researchers. On the internet there is rarely to be found any mention of the darker realities of autism, those who lack basic communication skills or live in institutional care. Without such mention the lives of the severely autistic can become invisible to the world, forgotten. Reality is not always a welcome guest on the internet world of autism.

Ms Pugh's article follows and I thank her for having the courage to speak up and to describe some of the realities of autism and the challenge of puberty for an autistic person.


Autism criticisms are counterproductive
Deborah Pugh, Special to the Sun
Published: Thursday, May 17, 2007

Lauren Brown's letter of May 7 criticizing my willingness to talk of the challenges of puberty and autism, and to allow my son to be identified, spoke more to her sense of shame around sexuality and disability then to my son's reality.

To our family it is not a source of shame that he is an adolescent with all the physical manifestations that brings. Nor is it a source of shame that he has autism.

Perhaps if Brown were to re-read Pete McMartin's excellent reporting more carefully, she may become more aware of my son's limited awareness of or concern about the opinions of his peers. If he had a higher level of awareness, then he would not have been identified.
Email to a friendEmail to a friendPrinter friendlyPrinter friendly
Font:

As someone who has worked as a journalist for 20 years and as an advocate for families of children with ASD for 12, now for ACT -- Autism Community Training -- I took this opportunity to speak openly about the reality for so many of our families because there are many children on the spectrum who would be embarrassed about this reality and many families who find it too difficult to discuss.

I have had many direct responses to McMartin's excellent piece, largely from other families, all of which have been grateful that I was prepared to speak honestly and with humour.

Criticizing the decision of families to discuss their challenges in the press, as they see fit, whether it is Brown's patronizing critique of the piece that I contributed to, or the superior finger-waving that letter writer Debra Antifaev resorts to in criticizing parent Cyndi Gerlach, is counterproductive if their real aim is to support the diversity of family experiences and the desperate need for better services.

Doubtless I have many limitations as a parent, but I am not sure that Brown is in any position to give lectures on advocating for children with autism.

Perhaps next time she feels so strongly about our children she could write a letter to the editor calling on government to adequately fund rapid diagnosis, equal access to excellent treatment regardless of age, and proper supports to all families struggling to raise families of children with disabilities -- regardless of diagnosis.

In closing I would like to thank The Sun for having the courage to delve into these delicate issues in depth and to do it without sentimentality. McMartin is to be congratulated for an excellent series which is sensitive to the extremely complex reality of our families.

Deborah Pugh lives in Vancouver.


© The Vancouver Sun 2007

http://tinyurl.com/2q5l6w

Autism Quotes # 1

"If a child cannot learn in the way we teach ... we must teach in a way the child can learn."

Dr. O. Ivar Lovaas

"When Jack was diagnosed we were devastated at that thought of what life might be like for him. Now he can talk. ABA is hard work, but it has opened up a whole range of opportunities for him. Life just keeps getting better."

Charmaine Fraser, Mother of Autistic Son, Australia

So we're choosing to tell our daughter's story now, after being quiet about it for the last 16 months: to emphasize how important it is that this bill pass in its original form. If it seems opportunistic or self-serving, well...there's not much I can say about that, except that things like ABA and other therapy programs would seem to be the point of insurance: to insure the well-being of these kids who otherwise would be without hope for a future.

Finally, the only thing that really gave me pause about posting this was something that was said to me about the possibility SWSNBN might read this later on in her life and be mortified. My only response to that is this: I'm not a religious person, so prayer is out of the question, but I hope beyond anything I have ever hoped in my miserable life that my daughter, at some point in the future, is able to read this blog and yell at her father about it. I want that so badly it physically hurts."

Pete, A Perfectly Cromulent Blog, Father of Autistic Daughter, Texas

Autism Interventions Ranked - EIBI (ABA) Best - Facilitated Communication Worst

A list of autism intervention rankings by Research Autism, a UK charity, is available online at:

http://www.researchautism.net/interventionlist.ikml

Research Autism in its own words:

Research Autism is the only UK charity exclusively dedicated to research into interventions in autism .

Established in 2003 as the Autism Intervention Research Trust, we commission, carry out and support high quality, independent research into new and existing health, education, social and other interventions. Our goal is the improvement of quality of life and outlook, for the individuals affected and those around them.

We have the active support of some of the world’s leading figures in autism and research. They have given freely of their time and expertise to work with us. We also work closely with our research sponsor, the Autism Research Centre at the University of Cambridge, as well as with the National Autistic Society.

http://www.researchautism.net/pages/About_Us/About_Us.ikml

Not surprisingly, Early Intensive Behavioural Intervention (ABA) received the highest ranking and Facilitated Communication received the worst ranking amongst the numerous interventions ranked. I say not surprisingly because those rankings are consistent with other professional and academic reviews of the efficacy of autism interventions.

EIBI received 3 green check marks indicating Very strong, positive evidence * 2 or more Grade A studies or * 1 Grade A study and 3 or more Grade B studies. The majority of these studies show significant positive effects

Early Intensive Behavioural Intervention(Back)

Ranking :
[Very strong positive evidence]
Type : Behavioural
Introduction

This is a highly structured and intense intervention in which a child is taught a range of skills by a team of therapists.

The therapists break down the skills into small tasks that are achievable and taught in a very structured manner.

Desired behaviour, such as use of language or socialisation is positively reinforced and accompanied by lots of praise. Negative behaviour, such as self harm or aggression is ignored or punished.
Opinion

* There is strong evidence to suggest that EIBI programmes are effective for many children with autism.

* However, individual response to treatment is variable and these programmes do not result in improvements in all areas of functioning.

* For some children, alternative interventions, such as specialist pre-school placements may produce comparable results and may offer greater opportunity for interactions with peers.

* If EIBI is undertaken, the possible impact on parents (in terms of time, finances, organisation involvement with other siblings) should be considered.


http://www.researchautism.net/interventionitem.ikml?id=13

Also not surprising, Facilitated Communication received the worst ranking of any of the interventions assessed - 3 X's - Very strong negative evidence. * More than 1 Grade A study showing no significant positive effects or * 3 or more Grade B studies showing no significant positive effects or * 1 Grade A study plus more than 2 Grade B studies showing no significant effects.

In addition to 3 X's; FC also received 3 question marks indicating Very strong evidence of harmful effects. Any Grade A or B studies indicating adverse/harmful effects.

Facilitated communication is designed to help people with limited communication develop their pointing skills.

Someone else physically supports the the individual so that he can point to pictures, symbols, letters and/or words.

By doing this, the individual can demonstrate what he wants to communicate.
Opinion

There is a significant body of evidence to show facilitated communication is ineffective when used with people with autistic spectrum disorders.

There is also evidence it can lead to significant harm.

For these reasons we do not believe that it is an appropriate intervention for people with autistic spectrum disorders.


http://www.researchautism.net/interventionitem.ikml?id=16

Wikipedia's Misleading List of People on the Autism Spectrum

Wikipedia's credibility has taken a big hit of late. See for example "Facts and friction: Wikipedia's quest for credibility, By STEPHEN HUTCHEON - SMH | Tuesday, 24 April 2007"

http://www.stuff.co.nz/stuff/4035909a28.html

One area that Wikipedia has not cleaned up in its attempts to address it's credibility issues is a beauty entitled "List of people on the autism spectrum" The list is flat out misleading in that most of the names on the list are high functioning or Aspergers with only 4 entries listed for "people with severe autism". Of the four names none are non-verbal low intelligence persons. You would never know from this Wikipedia entry that many autistic people have very severe intellectual and communication deficits. Everyone on the Wikipedia list is someone who can communicate extremely well. With one exception. The exception is a dead girl who died by her mother's hand at the age of 3.

Wikipedia's Misleading List of People on the Autism Spectrum:

People with unspecified forms of autism

Main article: Pervasive developmental disorder

The following people have been diagnosed as being somewhere on the autistic spectrum but the specific classification is unknown.

* Taylor Crowe, autism advocate and artist [1]
* Christopher Knowles, American poet [2]
* Katherine McCarron, autistic child murdered at the age of three by her mother, Karen McCarron. [3]
* Jason McElwain, high school basketball player [4]
* Michael Moon, adopted son of author Elizabeth Moon [5]
* Abubakar Tariq Nadama [6]
* Jasmine O'Neill, author of Through the Eyes of Aliens [7]
* Sue Rubin, subject of documentary Autism Is a World; Sue Rubin has no oral speech but does communicate with facilitated communication [8]
* Birger Sellin, author from Germany [9]
* Daniel Tammet, British autistic savant, believed to have Asperger Syndrome [10]

[edit] People with Asperger syndrome

Main article: Asperger syndrome

* Nikki Bacharach, daughter of composer Burt Bacharach and actress Angie Dickinson; committed suicide on January 4, 2007 [11]
* William Cottrell, student who was sentenced to eight years in jail for fire-bombing SUV dealerships [12]
* Luke Jackson, author of Freaks, Geeks and Asperger Syndrome: A User Guide to Adolescence [13]
* Craig Nicholls, frontman of the Australian garage rock band The Vines [14]
* Gary Numan, British singer and songwriter [15]
* Dawn Prince-Hughes, PhD, primate anthropologist, ethologist, and author of Songs for the Gorilla Nation [16]
* Judy Singer, Australian disability rights activist [17]
* Vernon L. Smith, Nobel Laureate in Economics [18]
* Satoshi Tajiri, creator and designer of Pocket Monsters/Pokémon [19]
* Liane Holliday Willey, author of Pretending to be Normal, Asperger Syndrome in the Family [20]

[edit] People with high-functioning autism

Main article: high-functioning autism

* Michelle Dawson, autism researcher and autism rights activist who has made ethical challenges to Applied Behavior Analysis [21]
* Temple Grandin, a designer of humane food animal handling systems. [22]
* Hikari Oe, Japanese composer [23]
* Bhumi Jensen, Thai prince, grandson of King Bhumibol Adulyadej of Thailand; killed by drowning in the tsunami caused by the 2004 Indian Ocean earthquake [24]
* Dylan Scott Pierce, wildlife illustrator [25]
* Jim Sinclair, autism rights activist [26]
* Donna Williams, Australian author of Nobody Nowhere and Somebody Somewhere; after testing for deafness from infancy until late childhood, and labeled psychotic and 'disturbed', Donna was formally diagnosed as autistic in her 20s with an IQ score under 80 (not technically in the HFA range) in spite of achieving a higher education. [27] .
* Stephen Wiltshire, British architectural artist [28]
* Caiseal Mor author of A Blessing and a Curse: Autism and Me; bestselling fantasy fiction author, musician and artist [29]

[edit] Autistic savants

Main article: Autistic savant

* Alonzo Clemons, American clay sculptor [30]
* Tony DeBlois, blind American musician [31]
* Leslie Lemke, blind American musician [32]
* Jonathan Lerman, American artist [33]
* Thristan Mendoza, Filipino marimba prodigy [34]
* Derek Paravicini, blind British musician [35]
* James Henry Pullen, gifted British carpenter [36]
* Matt Savage, U.S. autistic jazz prodigy [37]
* Henriett Seth-F., Hungarian autistic savant, poet, writer and artist [38]

[edit] People with severe autism

* Tito Mukhopadhyay, author, poet and philosopher [39]
* Lucy Blackman, university educated autistic author [40]
* Larry Bissonette , accomplished international autistic artist. [41]
* Amanda Baggs, advocate of rights for autistic people. [42]

People like my son Conor who has severe autism with serious developmental delays and communication deficits are not listed at Wikipedia. There is no mention, even generically, to the many autistic people who live out their adult lives in residential and institutional facilities being cared for by professional caregivers. Wikipedia allows the Neurodiversity Ideologues to mislead the world about the nature of autism with nonsense like this list.

Autism Resources in New Brunswick - Chatham Library Hosts Launch of Autism Collection

Chatham Library Hosts Launch of Autism Collection

Miramichi Weekend, Friday, May 11 2007

Representatives of Chatham Branch of the York Public Library, the New Brunswick Public Library Service and the New Brunswick Public Library Foundations gathered at a reception at the Chatham Branch on May 2 to launch a collection of resource books specific to Autism Disorder.

The president of the New Brunswick Autism Society Lila Barry made the presentation of books in honour of her mother-in-law, Emma “Big Momma” Barry.

She thanked the family members of Emma Barry in attendance for their generous donations that made the collection possible. Emma Barry was known for her love of all children but held children with special needs even closer to her heart.

In a disorder in which early detection and treatment is vital to the success of a child with Autism, parents are often desperate for information. Current statistics indicate that 1 in every 150 children will be on the Autism Spectrum. Resources are vital to successful outcome.

Six years ago, Barry’s son was diagnosed with Asperger’s syndrome, one disorder on the spectrum of Autism.

“I remember being so overwhelmed and distraught. One of the first places I sought was information at this library, but I was devastated to find no books here, and only two or three within the system in high demand and available only after a long wait. “

After joining the Autism Society of New Brunswick, she and others in the organization created a vision to provide better support for families with better resources and approached the New Brunswick Public Library Service with the idea of donating a collection of resource books.

This donation, the second of two to the New Brunswick Libraries Foundation from the Autism society, now brings the collection to 68 books. The monetary value of this gift was matched by the New Brunswick Library Foundation.

At the launch, Dr. Theresa McKenzie, a licensed psychologist and specialist in this disorder, stressed the importance of this donation. With wait times as they are, parents concerned about some of their children’s developmental behaviours need resources to provide strategies for coping at home and developing social skills. Often their concerns are dismissed but parents know their children best and need accessible resources.”

This collection will be housed at the Chatham Branch of the York Library Service but all New Brunswickers with interest or concerns about Autism Spectrum Disorders can access the books by inter-branch loans

Autism and NOISE

The Daily American Online of Somerset County PA is carrying a fascinating story of a high functioning autistic gentleman, Barney Vincelette, who was bothered by his neighbor's loud rock music and the steps he took to reach an accommodation with his neighbors. Many autistic persons, including my son Conor, are very sensitive to noises. There were times when I had to hold Conor on my lap while getting his hair cut. He would be so upset by the noise of shears in the barber shop that he would literally bite into my shoulder. We now pick quiet times when the shop is empty and get his hair cut, with scissors as much as possible, by a lady who is outstanding at working with Conor. Noise from motorcycles is a huge problem for Conor. Many motorbikes are adjusted to increase the sound level emitted and that is a problem for any one in the vicinity. For Conor it is a particularly difficult experience.


Autism renders sickening rock music

Tuesday, May 15, 2007 2:40 AM EDT

Barney Vincelette, who says his autism renders loud noises sickening to him, has been feuding for several years with neighbors in Houston, Del., over their rock music. At first, he invented his own sound-jammer, according to an April profile in the Wilmington News Journal, but a judge curtailed its use. Subsequently, he recorded super-annoying sounds of his own (including a fog horn's) and had them written out as music ("Sonata for Calliope of Truck Horns About to Be Transcribed for Locomotive Horns Opus No. 1"), at which point the judge decided that permitting the neighbors' Bon Jovi but not Vincelette's Sonata amounted to selective law enforcement, and the feuders settled their differences. (Vincelette, by the way, lives in a house shaped like a flying saucer.) [News Journal, 4-15-07]

Autism Rising in Nevada

The results of a decade-long study conducted by UNLV professors John P. Tuman and Sheniz Moonie found autism is on the rise in Nevada’s schools.

UNLV professors John Tuman and Sheniz Moonie have completed a decade long study on increasing autism rates in Nevada schools - from .27 per 1,000 in 1995 to 2.37 per 1,000 in 2004. This rate of increase is hard to explain away by any rationalization.

Professor Tuman notes that some autism cases are diagnosed as early as 24 months with signs noted as early as 15 months. In my sons case he was diagnosed 9 years ago at age 24 months and we noticed signs much earlier than 15 months although we did not think of, or even know about, autism at that time. He simply was not showing ordinary development milestones like giggling in response to peek a boo or responding in any noticeable way to attention. He did not use any typical baby words and barely spoke until long past 2 years of age - although he did use one word at an early age that stuck in my mind. While lying on the tile floor of a shopping mall, with his face pressed against the cool tile floor, Conor looked at the circular metal ring which formed the circumference of a drain pipe cover in the floor and said "circle". That reference to a geometric shape was the only word I heard him speak for a few years until we started using ABA to teach him words beginning with - apple.


Study: Autism rising
Professor shares findings

By Natalie Lombardo

UNLV political science professor and lead investigator of a study on the prevalence of autism in Nevada, John P. Tuman, spoke Wednesday about a nearly tenfold increase of the disorder in state schools.

Tuman was accompanied by his co-investigator Sheniz Moonie, a UNLV School of Public Health assistant professor, epidemiologist and biostatistician, speaking to a small group at the Carlson Education Building. Tuman said that 15 out of the 17 school districts in Nevada have experienced an increased prevalence of Autism Spectrum Disorder.

Counties such as Clark, Lander and Churchill had prevalence of one in 322, one in 224 and one in 250 in 2004. Esmeralda County is the only district in Nevada that reported zero prevalence from 1994 to 2004. “I do not think this statistic is unusual because Esmeralda enrolls fewer than 80 students,” Tuman said, pointing out that the larger the district the more prevalence of autism.

He said the average prevalence of autism increased in Nevada from .27 per 1,000 in 1995 to 2.37 per 1,000 in 2004. He added that the average prevalence of learning disabilities have increased from 84 per 1,000 in 1995 to 92.4 per 1,000 in 2004, which is the largest increase in the state.

In 1943, about a dozen children were observed with having an extreme social disability. Their inability to interact with others was characterized as “autism” by a psychiatrist, Dr. Leo Kanner.

Since Kanner discovered this disorder, research and knowledge of autism has come a long way.

Today, autism is not only characterized by children who have difficulties communicating in a social scene, but also by unresponsiveness, slow development, sometimes being mute, attachment to routines, impaired speech and temperamental behavior.

Having a child with autism, Tuman is extremely passionate about his studies, noticeable through during his lecture.

He also looked at resources and funding for more research and dealing with the disorder correctly in schools.

“Funding has a positive and statistically significant help in detecting children with autism,” he said. More funding would allow school districts to have the tools needed to detect students with autism and give them the special needs and attention required of autistic children.

Tuman said that although the average age of diagnosis for autism is 24 months, there have been cases where autism signs were noticed as early as 15 months.

He said differences in social and economic characteristics of school districts influence the identification of ASD, providing statistics to the audience.

Tuman and Moonie collected data about the prevalence of ASD from the Nevada State Department of Education. The data included statistics on disorders such as mental retardation, learning disabilities and speech and language impairment. The data received was from each school district in the state.



http://www.unlvrebelyell.com/article.php?ID=10788

Autism Crisis - Australia

ABC is reporting on an Australian study which indicates that autism is costing Australia [ Population 20,823,333, May 14 07, Australian Bureau of Statistics] up to $7 billion a year; a reflection of a 10 fold increase in rates of Autism and Aspergers. Dr. James Morton of Autism Early Intervention Outcomes Unit says the problem has caught government unawares. Apparently the Australian government is as oblivious to the realities of autism as the Canadian government. Maybe Roy Grinker, Kristina Chew and others can offer some soothing anthropological perspective and some new literary metaphors to assist the Australian families who are struggling to help their autistic children acquire basic language and life skills.

http://tinyurl.com/38l6b

<span style="font-weight:bold;">Autism costing Aust up to $7b: report

A new report has found the treatment of autism and related conditions such as Asperger syndrome are costing the Australian economy up to $7 billion a year.

It was commissioned by Dr James Morton, one of the founders of the Autism Early Intervention Outcomes Unit.

Dr Morton says the report's release in Brisbane today has been timed to mark the start of Autism Awareness Week.

"It's really gone under the radar. It's exploded in the last 10 years. Some of the studies suggests that the incidence has increased 10-fold in the last decade," he said.

"I think that is why it's caught government unawares. It wasn't anywhere near the problem it is now 10 years ago."

Dr Morton says the official response to the rising incidence of autism has been too little, too late.

"I hope that this study brings [autism] to the community's attention and leads to funding for early detection and early intervention, which makes an enormous difference and is very under-funded in this country," he said.

http://www.abc.net.au/news/newsitems/200705/s1921975.htm

National Autism Rally - Saturday May 26 - Dartmouth NS

[L to R - Andy Scott, Jim Munson, Peter Stoffer, Shawn Murphy]

The Supreme Court has spoken folks - twice. In Auton and Deskin-Wyneberg the Supreme Court of Canada has made it crystal clear that the equality rights provisions of the Charter of Rights and Freedoms are of no help to famlies seeking government funding for treatment of their childrens' autism. The SCC has left only one serous option to seek such remedy - the political arena. It is time to GET POLITICAL. FEAT-BC has been a Canadian leader in the fight for treatment for autistic Canadians and they will be at the Dartmouth Holiday Inn on Saturday May 26 to explain their national autism political strategy. Let's join this effort and fight for treatment for autistic Canadians. And let's say thank you to federal politicians who have fought for our autistic children - Andy Scott, Peter Stoffer, Shawn Murphy and Jim Munson. I hope to see you at the Holiday Inn. If you will attend please check out the registration info below and register before May 20.


An Invitation to join Families for Early Autism
Treatment of BC

(F.E.A.T. of BC) to say THANK YOU to:

Shawn Murphy, MP

Andy Scott, MP

Peter Stoffer, MP

Senator Jim Munson

For their dedication and commitment to improving the
lives of
Canadians affected by autism…

….AND….

To hear about F.E.A.T. of BC's exciting plans to "go
coastal" with
our national political initiative to achieve universal
health care
coverage for EVERY Canadian affected by autism.

Saturday, May 26, 2007

Holiday Inn, Harbourview

101 Wyse Rd.

Dartmouth, Nova Scotia,

B3A 1L9

2:00 p.m. – 5:00 p.m.

$25.00 per person – Refreshments will be served

Please make cheques payable to:

F.E.A.T. of BC, c/o Louise Witt, 2135 – 129th St., Surrey, BC, V4A 8H6

R.S.V.P. by May 20th. to Louise Witt, email: taylorwitt@shaw. ca or
call 604-538-1370.

For local enquiries: Luigi Rocca - luiroc@gmail. com 869-5444 (B) or
382-2239 (h)

Put ABA back in HB 1224 - A Perfectly Cromulent Blog

The attached excerpt and link are from Put ABA back in HB 1224 on Pete's blog A Perfectly Cromulent Blog Pop culture related smart-assery . The article is written in the blogger's irrevent style and is a textbook example of the need to include specific reference to ABA in legislation governing provision of health care coverage for autism. Whether it is Canada or Texas governments and lobbyists do not want legislation to require that Applied Behavior Analysis (ABA) be covered as a health care intervention for autism. Even though ABA is THE proven effective intervention for autism, even though autism reates are soaring, and even though studies document huge long term savings to governments and society ABA is still resisted while almost any other treatment for any other ailment receives coverage. Pete's commentary is very well written, gets to the point and tells a tale of government unresponsiveness to autism which is as true of the Government of Canada as it is of the Government of Texas.


"Which is what makes the amendment to HB 1224 so maddening. After all, if I was feeling a little down in the dumps, my health plan would cheerfully cover the cost of my happy pills. If I drunkenly jawed off to Mirko "Cro Cop" Filipović in a Zagreb bar and he broke my jaw, insurance would cover the emergency room visit and my subsequent weeks of pain meds. Hell, if I was an 80-year old man having trouble getting a goddamned hard-on, insurance would cover my boner pills, but therapy to help my daughter become a functional and productive member of society and not just another ward of the state after her parents die? We can apparently fuck right off.

So we're choosing to tell our daughter's story now, after being quiet about it for the last 16 months: to emphasize how important it is that this bill pass in its original form. If it seems opportunistic or self-serving, well...there's not much I can say about that, except that things like ABA and other therapy programs would seem to be the point of insurance: to insure the well-being of these kids who otherwise would be without hope for a future.

Finally, the only thing that really gave me pause about posting this was something that was said to me about the possibility SWSNBN might read this later on in her life and be mortified. My only response to that is this: I'm not a religious person, so prayer is out of the question, but I hope beyond anything I have ever hoped in my miserable life that my daughter, at some point in the future, is able to read this blog and yell at her father about it. I want that so badly it physically hurts."

http://www.whiterose.org/pete/blog/archives/010441.html

Autism, Vaccines & the Spread of Mumps - Eastern Canada

The belief that some vaccines, or mercury based vaccine preservatives, cause or contribute to today's increasing autism rates, now estimated at 1 in 150, persists despite an almost total lack of support in the scientific community for any causal connection. The fear generated by that belief is itself believed to have contributed to higher rates of vaccine refusals with resulting increases in diseases such as measles and mumps. In Atlantic Canada we are currently suffering an outbreak of mumps, with the particular strain of mumps having orginated in the UK where immunization rates dropped from fear that the measles-mumps-rubella vaccine caused autism.

Health: ALERT: INFECTIONS

Mumps outbreak spreads

CAROLINE ALPHONSO

May 11, 2007

Nova Scotia's mumps outbreak has spread to Ontario, infecting five people so far and putting public-health officials in the province on alert for even more cases in the weeks to come.

The latest outbreak indicates that many who were vaccinated years ago are now susceptible to catching the disease. Public-health officials are now debating whether they need to administer a booster shot.

Ontario's Ministry of Health and Long-Term Care confirmed yesterday that the cases, two of which are in Toronto, are linked to the outbreak in Nova Scotia, where more than 200 people have been infected by the disease. The outbreak, which began in late February, has also infected 34 people in New Brunswick and one in Prince Edward Island.

...

Neil Rau, an infectious disease specialist at Halton Healthcare Services in Ontario, said the current strain of mumps originated in Britain, where there was a large outbreak in 2004. Immunization rates had drop significantly in Britain because many people believed the measles-mumps-rubella vaccine caused autism. The vaccine-autism link has since been disproved, he noted.

The disease reached Iowa last year, and Dr. Rau said it has now found its way into Canada.

"It's global travel compounded with vaccine refusal," he said.

http://tinyurl.com/3b49fz

Autism & ABA - "Life Just Keeps Getting Better" for Jack Fraser

Dealing with it ... autism sufferer Jack Fraser enjoys time with his mum Charmaine. / The Daily Telegraph

In "Autism epidemic being ignored" Sunday Telegraph, May 12, 2007, Zoe Taylor describes the autism epidemic in Australia where a recent federal government-funded review of research into autism concluded there was scientific evidence of the effectiveness of therapies including applied behaviour analysis – which draws on research dating back more than 40 years. Despite knowledge in Australia of the efficacy of ABA as an autism intervention the treatment remains underfunded, good news for those who view autism as a "joy" but bad news for families struggling to cope with the realities of autism, families trying to help their autistic children. Amongst the hardship though are stories such as those of Jack Fraser, a young autistic boy whose family has done whatever was necessary to fund ABA treatment for him, with great results for Jack.


Charmaine and Anthony Fraser had to move from Newcastle to Sydney and cash in their Super twice in order to fund ABA therapy for their son five-year-old son Jack.

The couple, from Wollstonecraft, face annual bills of around $60,000 for the treatment which includes one-on-one home therapy sessions every weekday morning and afternoon.

They have seen vast improvements in Jack, but he is unlikely to be able to attend a mainstream school so they are considering sending him to a specialist private school.

Mrs Fraser said she had no regrets about funding the therapy, but was angry there was no Government help.

She added: "When Jack was diagnosed we were devastated at that thought of what life might be like for him. Now he can talk. ABA is hard work, but it has opened up a whole range of opportunities for him. Life just keeps getting better."

http://www.news.com.au/sundaytelegraph/story/0,,21713139-5006007,00.html