Wednesday, February 27, 2008
Conor has autism disorder.
He also has his own lively personality quite separate and apart from his autism. He is much more as a person than his autism. He is a lot of fun. While these pictures were being taken I was asking "Where's Conor?" "Where did Conor go?" (When my mouth wasn't covered).
Conor enjoyed every second of our fun. And so did Dad.
FEAT-BC “Campaign Kick-off Rally”: Sunday, March 2, 2008
Vancouver, BC: - FEAT-BC [Families for Early Autism Treatment in BC] today announced it will be holding a “campaign kick-off rally” on Sunday, March 2, 2008, beginning at 2:00pm, at the Jack Shadbolt Centre for the Arts, 6450 Deer Lake Avenue, Burnaby. This rally launches the FEAT-BC goes coastal campaign, aimed at influencing the electoral outcome in more than a dozen targeted constituencies across Canada in the upcoming federal general election.
“ In its Auton decision, the Supreme Court of Canada told parents of autistic children to ‘get political’ if they wanted to see their children no longer be orphans of the Medicare system,”states Jean Lewis, a founding director of FEAT-BC. “Well, we’re taking the judiciary at their word and launching a nation-wide campaign to elect MPs, regardless of which political party holds office following the next election, who will vote for legislation that enshrines the treatment of autism under Medicare because it is the morally and economically correct thing to do.”
For further information, contact: Jean Lewis at 604-925-4401 or 604-290-5737, and firstname.lastname@example.org
Tuesday, February 26, 2008
Fans of Charles LeBlanc's blog site "Charles LeBlanc Political ADHD Activist" have been surprised to see a blank white page where Charles' blog used to be located.
Blogger has been having problems for the past 24 hours but Charles speculates that there may be more to it in the case of his blog site. Time will tell.
In the meantime anyone wanting to see Charles' pics, and read what he and his guests have to say, can still do so at Charles LeBlancs Other Blog.
Monday, February 25, 2008
Following is the link to an abstract of an article, Antibodies against fetal brain in sera of mothers with autistic children, published in the February issue of the Journal of Neuroimmunology
Lead investigator Harvey Singer, M.D., director of pediatric neurology at John Hopkins Children's Center, stresses that autism is a complex condition caused by an interplay of immune, genetics and environmental factors. Further studies are needed to confirm that particular antibodies do indeed cross the placenta and cause damage to the fetal brain.
(AScribe Newswire) -- The mothers of some autistic children may have made antibodies against their fetuses' brain tissue during pregnancy that crossed the placenta and caused changes that led to autism, suggests research led by Johns Hopkins Children's Center investigators and published in the February issue of the Journal of Neuroimmunology.
The causes of autism, a disorder manifesting itself with a range of brain problems and marked by impaired social interactions, communication disorders and repetitive behaviors, remain unknown for an estimated 90 percent of children diagnosed with it. Genetic, metabolic and environmental factors have been implicated in various studies of autism, a disorder affecting 1 in 150 U.S. children, according to estimates by the Centers for Disease Control and Prevention.
"Now our research suggests that the mother's immune system may be yet another factor or a trigger in those already predisposed," says lead investigator Harvey Singer, M.D., director of pediatric neurology at Hopkins Children's.
Researchers caution that the findings needn't be cause for alarm, but should be viewed instead as a step forward in untangling the complex nature of autism.
Mostly anecdotal past evidence of immune system involvement has emerged from unusual antibody levels in some autistic children and from postmortem brain tissue studies showing immune abnormalities in areas of the brain. Antibodies are proteins the body makes in response to viruses and bacteria or sometimes mistakenly against its own tissues. Yet, the majority of children with autism have no clinical evidence of autoimmune diseases, which prompted researchers to wonder whether the antibodies transferred from mother to child during pregnancy could interfere with the fetal brain directly.
To test their hypothesis, the research team used a technique called immunoblotting (or Western blot technology), in which antibodies derived from blood samples are exposed to adult and fetal brain tissue to check whether the antibodies recognize and react against specific brain proteins.
Comparing the antibody-brain interaction in samples obtained from 100 mothers of autistic children and 100 mothers of children without autism, researchers found either stronger reactivity or more areas of reactivity between antibodies and brain proteins in about 40 percent of the samples obtained from the mothers of autistic children. Further, the presence of maternal antibodies was associated with so-called developmental regression in children, increasingly immature behaviors that are a hallmark of autism.
While the findings suggest an association between autism and the presence of fetal brain antibodies, the investigators say further studies are needed to confirm that particular antibodies do indeed cross the placenta and cause damage to the fetal brain.
"The mere fact that a pregnant woman has antibodies against the fetal brain doesn't mean she will have an autistic child," Singer says. "Autism is a complex condition and one that is likely caused by the interplay of immune, genetic and environmental factors."
Researchers are also studying the effect of maternal antibodies in pregnant mice. Preliminary results show that the offspring of mice injected with brain antibodies exhibit developmental and social behaviors consistent with autism.
Senior author on the study: Andrew W. Zimmerman, M.D., of the Center for Autism and Related Disorders at the Kennedy Krieger Institute.
Co-authors: Christina Morris and Colin Gause, both of Hopkins; Pam Gillin of the Kennedy Krieger Institute; and Stephen Crawford, Ph.D., Johns Hopkins Bloomberg School of Public Health. The study was funded by the Alliance for Autism Research.
- - - -
CONTACT: Ekaterina Pesheva, Johns Hopkins Children's Center, 410-516-4996, pager 410-283-1966, email@example.com
We never would have seen she could write these things. Can you imagine? We would have never have gotten out of her how articulate she is how intelligent she is. Now, she tells us stories, she teases her brother. She just does it in a different way, she does it with her computer."Arthur Fleishmann, Carly's Dad, discussing his, and his wife Tammy's, decision to provide Carly with early intensive ABA treatment, CTV, February 17, 2008
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
American Academy of Pediatrics, Management of Children With Autism Spectrum Disorders, October 29, 2007
Sunday, February 24, 2008
Autism activists in the Australia island state of Tasmania, Action for Tasmania's Autistic Children, are angry over the failure by the Department of Education to provide applied behavior analysis for autistic school children in Tasmania. As reported by ABC Tasmania, and in the ATAC Media Release of February 24, 2008, the group's secretary, Roger Law, claims that some aides for autistic children are being taken away and the department is avoiding providing ABA for the children:
""The only effective treatment for autism is applied behavioural analysis and very intensive, and because it's costly the schools have avoided it"
It seems that, no matter the jurisdiction, professional "educators" simply will not acknowledge that many autistic children need Applied Behavior Analysis to learn and develop. I would not be surprised if the Tasmanian "educators" trot out the old "one side does not fit all" cliché to justify their failure.
In Scotland Lacks Autism Services I commented on an article on healthcarerepublic on July 6, 2007 and the lack of services for people with autism in Scotland. That article, Call to find autism early in Scotland, focused on guidelines published by the Scottish Intercollegiate Guidelines Network (SIGN) calling on doctors to look for signs of autism in children and adolescents, including problems with social interaction and play, speech and behaviours. The article also expressed the doubt of many professionals in Scotland that early diagnosis would make much difference because of the lack of autism services available in Scotland.
In Revealed: ‘invisible’ adults living with autism, the Sunday Herald today reports, on an impending report by the National Autistic Society, the lack of services for autistic adults in Scotland, their dependency on family members for support and the isolation in which many spend their lives:
"Issues in the report include limited access to diagnosis, with 56% of those surveyed saying they found it hard to get their condition recognised. One adult said: "The GP did nothing. She didn't see any point in diagnosis for an adult."
But even after diagnosis many say they do not get the support they need. One participant in the survey commented: "I have had little or no support ever - my mother has done everything."...
Bill Welsh, president of the Edinburgh-based Autism Treatment Trust, said the plight of many adults with autism had been "swept under the carpet", yet one child in 100 in the UK was diagnosed with the condition and the cost to society for each autistic child was estimated at £4 million. He added: "A major social, health and financial problem is upon us and urgent action is required."autism
Saturday, February 23, 2008
“It’s expensive but buying tanks is expensive too. “What we have now is a
patchwork, scattergun approach to dealing with autism in individual provinces.”
Senator Jim Munson, The Guardian, February 23, 2008
Friday, February 22, 2008
In Family searches for missing man abc7chicago reports on 21 year old Jamaris Collins, who has the mental capacity of a young child, who had not returned several days after telling his aunt he was going for a walk to a nearby store. In Autistic man missing in Lyons the Chicago Tribune reported on John Valle, a 21 year old autistic man, who had no money, did not know his way around the
Hopefully, John Valle and Jamaris Collins will be found, or turn up, safe and sound.
Thursday, February 21, 2008
Vote 4 Autism on March 3!
Wednesday, February 20, 2008
FOR IMMEDIATE RELEASE
Wednesday, February 20, 2008
CONTACTS: Elise Miller, MEd - (360) 331-7904; firstname.lastname@example.org
Steve G. Gilbert, PhD, DABT – (206) 527-0926; email@example.com
CONSENSUS STATEMENT: http://www.iceh.org/LDDI.html
Learning and Developmental Disabilities Initiative (LDDI) Publishes Scientific Consensus Statement on Environmental Factors
February 20, 2008, Seattle, WA. The Collaborative on Health and the Environment’s Learning and Developmental Disabilities Initiative published today the Scientific Consensus Statement on Environmental Agents Associated with Neurodevelopmental Disorders (available at http://www.iceh.org/LDDI.html).
This statement, signed by more than 50 scientists and health professionals nationally and internationally, summarizes the latest science about environmental contaminants associated with neurodevelopmental disorders, such as learning disabilities, autism spectrum disorder, attention deficit hyperactivity disorder (ADHD), intellectual disabilities and developmental delays.
The statement, which has a glossary and over 200 references, was drafted and reviewed by a prestigious committee of scientists and health professionals based in North America. They concluded:
environmental exposures from the earliest stages of fetal development through
adolescence is clearly an essential public health measure if we are to help reduce the growing numbers of those with learning and developmental disorders and create an environment in which children can reach and maintain their full potential.”
“We know enough now to move on with taking steps to protect our children. This document pulls that knowledge together to further this vital effort," said reviewer Martha Herbert, PhD, MD, an assistant professor of neurology at Harvard Medical School and a pediatric neurologist with subspecialty certification in neurodevelopmental disabilities at the Massachusetts General Hospital in Boston.
Other researchers on the review committee underscored the cost-savings, policy-related and ethical implications of this consensus statement. “We could cut the health costs of childhood disabilities and disease by billions of dollars every year by minimizing contaminants in the environment,” said Phil Landrigan, MD, MSc, of the Children’s Environmental Health Center at the Mount Sinai School of Medicine. “Investing in our children’s health is both cost-effective and the right thing to do.”
“The overwhelming evidence shows that certain environmental exposures can contribute to life-long learning and developmental disorders,” noted Ted Schettler, MD, MPH, with the Science and Environmental Health Network. “We should eliminate children’s exposures to substances that we know can have these impacts by implementing stronger health-based policies requiring safer alternatives. Further, we must urgently examine other environmental contaminants of concern for which safety data are lacking. ”
“The proportion of environmentally induced learning and developmental disabilities is a question of profound human, scientific and public policy significance,” said lead author Steven G. Gilbert, PhD, DABT, of the Institute of Neurotoxicology & Neurological Disorders, “and has implications for individuals, families, school systems, communities and the future of our society. The bottom line is it is our ethical responsibility to ensure all children have a healthy future.”
This document is designed for researchers, health professionals, health-affected groups, environmental health and justice organizations, policymakers and journalists to use as a resource for understanding and addressing concerns about links between environmental factors and neurodevelopmental disorders.
Tuesday, February 19, 2008
Carly's parents refused to "write her off" and instead obtained intensive ABA (Applied Behavior Analysis) intervention for her. Professionals, including autism specialist Dr. Wendy Roberts, who has read some of her writings and observed Carly on video, says that she is "certainly unique in her abilities and provides some fascinating insights into the condition of autism". Dr. Roberts also notes that "Carly possesses unique abilities that make her a rare case, or it may be that her early and intensive training simply drew the skills out." Her parents are very happy that they provided Carly with the benefits of ABA therapy.
CTV has also provided a separate page of Carly's writings which are fascinating reading. Some of what she says strikes me in many ways as similar to what I imagine my son Conor is feeling. I found her writings on stimming particularly interesting.
Monday, February 18, 2008
Saturday, February 16, 2008
Autism in Ireland - Fianna Fail Uses Old, Failed Logic, Tired Clichés, In Denying ABA Help To Autistic Children
Fianna Fáil's Peter Power appealed to the Opposition not to assume that those opposing the motion were 'anti-children', saying nobody was absolutely right, or absolutely wrong.
There was derisive laughter from the gallery when Fianna Fáil's Margaret Conlon, a former teacher, referred to children with special needs demonstrating their abilities 'when they play their tin whistles as a group'.
Concluding the debate for the Government, Minister Micheál Martin said the Government did not believe 'one size fits all', because autism is a continuum, and said the idea of a wide range of teaching methods was not a ridiculous suggestion.
These rationalizations were trotted out a decade ago in New Brunswick and other jurisdictions in Canada and the United States in an effort to deny proven effective ABA services for autistic children desperately in need of such help. These rationalizations are used to provide cover for a refusal to provide effective help for autistic children, not because of genuine concern that other methods might be more appropriate, but because of the cost implications of providing effective ABA intervention.
The reality is that stubborn insistence on refusing the only widely endorsed, evidence based, effective intervention for autistic children is motivated by nothing more than miserliness. The concern of those who resort to such obviously weak excuses has nothing to do with ensuring that each autistic child receives the best intervention possible for that child. If it were they would provide ABA for each child for whom, in their wisdom, they consider it appropriate and other interventions, whatever they might be, for the others. But they won't do that either; governing parties are often just too cheap to spend money to provide evidence based, effective ABA treatment and education for autistic children.
In New Brunswick the government of the day tried the old "one size does not fit all" approach . The debate over whether ABA should be provided by government was intense and at times very personal. But today, although improvements are badly needed, government funded ABA intervention is provided for pre schoolers and some methods and resource teachers and teacher aides are being trained to provide ABA in the school setting. My son with Autism Disorder , and in grade 6, receives ABA instruction every day at Nashwaaksis Middle School. ABA services are also provided to one extent or another in jurisdictions across Canada.
The debate in New Brunswick, and elsewhere, was moved forward by focusing on the principle that interventions should have a solid evidence basis to support their effectiveness. Without an evidence basis parents and officials are essentially gambling with the development of autistic children by wasting time on unproven and unreliable interventions. Here in New Brunswick it was the insistence on evidence based interventions that emerged from an Inter Departmental Committee review of autism specific services in 2001, which at that time were virtually non existent. It is that commitment to evidence based practices which has led to substantial improvements, and to the provision of ABA services for autistic children in New Brunswick.
One of the most helpful and influential reviews of the studies of autism intervention effectiveness was the MADSEC ( Maine Administrators of Services for Children with Disabilities) Autism Task Force Report 1999, 2000 (rev.ed.) The MADSEC Autism Task Force was commissioned to:
perform a detailed analysis of methodologies with which to educate children
with autism. This analysis will focus upon the scope and quality of scientific
research which objectively substantiates, or fails to substantiate, each method’s
effectiveness. Based upon the research analysis, the MADSEC Autism Task Force
will make recommendations for the consideration of decision makers who are key
to the intervention of children with autism. (Mission Statement, p. 2 )
The MADSEC team reviewed the scientific literature, literally hundreds of studies, in support of various autism interventions. It concluded, as summarize in its Executive Summary at pages 5-6:
• Substantiated as effective based upon the scope and quality of research:
• 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:
• Without scientific evaluation of any kind:
Greenspan’s DIR/”Floor Time,” Son-Rise.
The MADSEC depiction of ABA as the only autism intervention substantiated as effective, based on the scope and quality of research in support, was not the only review of the research literature to reach such a conclusion. State agencies in New York and California and the office of the US Surgeon General had reached similar conclusions. Nor was it the last.
In Management of Children With Autism Spectrum Disorders, October 29, 2007 the American Academy of Pediatrics stated:
Applied Behavior Analysis
Applied behavior analysis (ABA) is the process of applying interventions that are based on the principles of learning derived from experimental psychology research to systematically change behavior and to demonstrate that the interventions used are responsible for the observable improvement in behavior. ABA methods are used to increase and maintain desirable adaptive behaviors, reduce interfering maladaptive behaviors or narrow the conditions under which they occur, teach new skills, and generalize behaviors to new environments or situations. ABA focuses on the reliable measurement and objective evaluation of observable behavior within relevant settings including the home, school, and community. The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology 21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–40
Other interventions were evaluated by the AAP but no other intervention received a comparative positive assessment, not even close.
Fianna Fail is using the old beaten argument that one size does not fit all to justify refusal to provide ABA services to autistic children. In doing so they are denying those children the opportunity to realize, in the words of the AAP, "substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior".
Fianna Fail has its counterpart here in Canada. Although most provincial jurisdictions try to provide ABA services, the level of funding, and extent of service provided, varies from province to province. Our federal government has huge surpluses but will not provide funding to the provinces to pay for more ABA intervention. The Conservative government of Prime Minister Stephen Harper and Alleged Health Minister Tony Clement refuse, on a variety of flimsy grounds, including the old "one size does not fit all cliché", to spend money to help autistic children.
For Ireland's Fianna Fail, and for Canada's Conservative Party, it appears that money means more than children .... more than autistic children anyway.
Friday, February 15, 2008
updated. This FAQ site dispels some of the misinformation being circulated by bloggers about their 2007 reanalysis. Autism Street in particular has attempted to diminish the results and significance of the DeSoto and Hitlan reanalysis which:
"documents a research finding that has been said to show there is "no connection between mercury and autism" was wrong; thus, some may have written off any connection too hastily. Certainly, if persons concluded that mercury and autism could not be linked based on Ip 2004 stated results, they would want to reconsider."
If you have a non-faith based interest in this important autism issue, and your source of understanding of the DeSoto and Hitlan article is Autism Street, or other blog sites, you may want to visit the DeSoto and Hitlan updated FAQ site. The authors ask people to communicate with them directly if they have questions about their article and the conclusions they reached on this important subject.
NEW YORK, Feb. 13 /PRNewswire/ -- Sundance Channel will present the U.S. television premiere of Lauren Thierry's documentary Autism Every Day on April 2, 2008, which has been designated World Autism Awareness Day by the United Nations. The film, which debuted at the 2007 Sundance Film Festival, documents a typical 24-hour day in the lives of eight families struggling to raise children with autism. Autism Every Day premieres on April 2nd at 8:00pm et/pt.
Autism is a complex brain disorder that inhibits a person's ability to communicate and develop social relationships, and is often accompanied by extreme behavioral challenges. There is no cure for autism and the symptoms can range from quite mild to very severe. Autism rates are increasing throughout the world. In the United States, diagnoses have increased tenfold in the last decade, affecting 1 in 150 children according to the Centers for Disease Control. Autism's cause remains unknown, and there is currently no test to help prevent it. Addressing the disorder as a global health issue, the General Assembly of the United Nations has designated April 2nd as World Autism Awareness Day in perpetuity, starting in 2008. On April 2nd, U.N. member nations will seek to raise society's awareness of autism through education and celebration.
With Autism Every Day, director Lauren Thierry (who is herself the mother of a child with autism) illuminates the struggles parents of children with autism face every moment of the day. Thierry goes inside the homes of eight diverse families doing their best to cope with a perplexing disorder that completely dominates their lives. Autism Every Day shows how developmental skills that most parents take for granted -- a child's ability to brush his teeth or communicate a need -- can prove enormous hurdles for an autistic child. At the same, Thierry's film captures the unconditional, powerful love these parents feel for their children and their determination to provide them with the best care possible. Autism Every Day was produced by Autism Speaks, the nation's largest advocacy organization.
ABOUT AUTISM SPEAKS
Autism Speaks is dedicated to increasing awareness of autism spectrum disorders, to funding research into the causes, prevention and treatments for autism, and to advocating for the needs of individuals with autism and their families. It was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Bob Wright is Vice Chairman, General Electric, and served as chief executive officer of NBC for more than twenty years. To learn more about Autism Speaks, please visit http://www.autismspeaks.org/.
ABOUT SUNDANCE CHANNEL
Under the creative direction of Robert Redford, Sundance Channel is the television destination for independent-minded viewers seeking something different. Bold, uncompromising and irreverent, Sundance Channel offers audiences a diverse and engaging selection of films, documentaries, and original programs, all unedited and commercial free. Launched in 1996, Sundance Channel is a venture of NBC Universal, Showtime Networks Inc. and Robert Redford. Sundance Channel operates independently of the non-profit Sundance Institute and the Sundance Film Festival, but shares the overall Sundance mission of encouraging artistic freedom of expression. Sundance Channel's website address is http://www.sundancechannel.com/.
Thursday, February 14, 2008
Wednesday, February 13, 2008
CBC has provided a good general overview of Autism Disorders in Canada in Autism Making sense of a confusing world. The overview includes a description of autism disorders, some autism history (Kanner and Asperger) and treatment. There is a good review of the funding and age restrictions for ABA services for autism in each province in Canada.
There is one important omission and that is with respect to New Brunswick. Here we have a 5 year age cut-off as stated. But New Brunswick has begun to provide ABA intervention in our schools. This has been done by training Teacher Aides and Resource Teachers at the University of New Brunswick - College of Extended Learning Autism Intervention Training Program in Fredericton. A couple of classes of the UNB-CEL AIT have graduated, another is about to, and the government of Premier Shawn Graham and Education Minister Kelly Lamrock have committed to provide another 3 years of training for TA's and Resource Teachers through UNB-CEL.
The UNB-CEL Autism Intervention Training Program is a key part of this approach. The program was developed through the University of New Brunswick with input from the Autism Society New Brunswick. This program is critical to ensuring the quality and integrity of the ABA and other autism services provided in the schools. By training TA's and Resource Teachers the education system's existing human resource system is used to the maximum extent possible. Some Autism Support Workers and Clinical Supervisors have been recruited by the Education Department itself. These people have been trained through a parallel program offered by UNB-CEL so the transition into the Education system is relatively smooth.
There is with any such development resistance. Some senior Education Department careerists have preferred to struggle against the UNB-CEL training in favor of "in-house" training combined with a commercial internet training program but, to date, they have not prevailed. The CUPE local representing Teacher Aides have also filed grievances on behalf of its members since not all current TA's meet the UNB qualifications for admission to the Autism Intervention Training Program. As a labour lawyer I understand the role of the Union in protecting ALL of its members interests but the long term interests of the greatest number of their members is best protected by providing the autism training to those members who qualify for admission. And I would expect that any labour arbitrator hearing these grievances would give the greatest weight to the best interests of the child principle in arbitrating these grievances - in these cases the best interests of children with autism disorders.
Apart from the omission of autism services in New Brunswick's education system the CBC review is a balanced, comprehenseive and informative overview of autism disorders and autism services in Canada.
Tuesday, February 12, 2008
Autism Trek Update - Federal Health Minister Clement Passes the Autism Buck (but not the bucks) to the Provinces
High School political science students in this country are aware that the primary constitutional responsibility for health care rests with the provinces. But our history also shows that the provinces and the federal government have cooperated to provide a national health care system. There is nothing to stop the federal government from spending some of those surplus dollars taken from all Canadians to help provincial governments fund needed autism services across Canada. So that all Canadians with autism receive the services they need.
It is long past time that alleged "Health" Minister Clement put the Health back in his title and started acting like a Health Minister.
To put it politely Minister Clement - do your job or step aside please.