Join National Autism Strategy/ABA in Medicare NOW Facebook Group

Everyone with an interest in autism who wants to see aba treatment for autism included under medicare coverage, who wants to see ALL Canadian children with autism receive treatment for their autism is invited to join the
National Autism Strategy / ABA in Medicare NOW! FACEBOOK group at this location:

http://www.facebook.com/group.php?gid=3128185580

Come on over folks.

Let's get our federal government to start taking autism seriously and ensure that whether a child with autism lives in Oromocto, New Brunswick, Rimouski, Quebec, or Edmonton, Alberta they will receive government funded ABA treatment for their autism.

Let's GET UNITED, let's GET POLITICAL!

Medicare for Autism NOW! Petition - Day 1 - A Good Start

Got off to a good start today with 44 signatures on the Medicare for Autism NOW! Petition. Above New Brunswick's famous (infamous?) blogger Charles LeBlanc relaxes at the Second Cup in King's Place Fredericton - and signs the petition.

I encourage everyone to download the petition from the FEAT BC site and get as many signatures as possible. If you can't download pdf files download Adobe Acrobat for free with the link from the FEAT ONTARIO main page.

Let's get those signatures and get them to our MP's to read in the House of Commons!

Let's GET POLITICAL!

http://featbc.org/petition.pdf

http://www.featontario.org/

Medicare for Autism NOW! Petition

Please click on the url following to download the Medicare for Autism petition. Get your signatures and present them to your Member of Parliament with a minimum of 25 signatures and ask your MP to present to Parliament.

The Supreme Court of Canada and the Ontario Court of Appeal (Auton, Deskin-Wyneberg) have made it clear that the equality provisions of the Charter of Rights are of little or no assistance to Canadians seeking treatment for autistic children. Now is the time to GET POLITICAL!

http://featbc.org/petition.pdf


PETITION

TO THE HOUSE OF COMMONS IN PARLIAMENT ASSEMBLED

We, the undersigned citizens of Canada, draw the attention of the House to the following:

Whereas children suffering from an Autism Spectrum Disorder (ASD) are among the weakest and most vulnerable sector of Canadian society;

and whereas, in Canada the rate of children being diagnosed with ASD is high and increasing at an alarming rate (currently approximately 1 child in 195);

and whereas, until the cause and cure of autism are found, children suffering from autism can benefit from the provision of Intensive Behavioural Intervention (IBI) therapy treatment based on the principles of Applied Behaviour Analysis (ABA);

and whereas, for a variety of reasons including lack of assigned resources, unconscionable waiting lists, and delegation to Ministries with little or no expertise, the provision of IBI/ABA therapy treatment to children with autism is woefully inadequate;

Therefore, your petitioners call upon Parliament to

1) amend the Canada Health Act and corresponding Regulations to include IBI/ABA therapy for children with autism as a medically necessary treatment and require that all Provinces provide or fund this essential treatment for autism; and

2) contribute to the creation of academic chairs at a university in each province to teach IBI/ABA treatment at the undergraduate and doctoral level so that Canadians professionals will no longer be forced to leave the country to receive academic training in this field and so that Canada will be able to develop the capacity to provide every Canadian with autism with the best IBI/ABA
treatment available.


http://featbc.org/petition.pdf

Senator Jim Munson Says Medicare for Autism Now!

NOTES FOR REMARKS: THE HONOURABLE JIM MUNSON ONTARIO FAMILIES FOR EARLY AUTISM TREATMENT TORONTO JUNE 13, 2007

Thank you.

I feel very emotional about the subject of autism. It was because of a meeting, by chance, with the father of an autistic child, that I got involved in the issue. This father’s name is Andrew Kavchak and he works for the federal government. At lunch time, instead of eating a sandwich, he wears a sandwich board and walks on Parliament Hill to draw attention to the need for action to help children and families with autism.

It was my emotions that drew me into the issue and made me want to work on behalf of children and families with autism, but since then, after this emotional beginning, I’ve learned that there are many cut-and-dried reasons to work for this cause.

First of all, there are political reasons: autism is affecting about 1 in 160 families in Canada. It doesn’t discriminate and affects all groups of the population and in every region. It’s a far-flung constituency, if you will, and one that is getting bigger and, as you can see, certainly getting louder.

Second, there are financial reasons. Autism is a very expensive problem to address. Treatment that is proven to work, Intensive Behavioural Intervention, costs about $60,000 per year. But not providing treatment is even more expensive because it involves respite care, group homes, and institutionalization. A study by Harvard University puts the annual cost of autism to Canada’s economy at $3.5 billion. And this is without providing care across the board to every child who needs it. But it may surprise you to know that providing this care won’t cost us more. It will cost us less. In fact, by spending on treatment, we save $1.5 million per child, according to research undertaken in 2000.

So you see, addressing the problem is expensive, but not addressing it is even more expensive. Children with autism grow up to be adults with autism. And their devoted parents, who have repeatedly mortgaged their homes and undergone sacrifice after sacrifice to ensure treatment for their children, will one day pass away. And then it will be up to the state to look after the children they leave behind. Only five per cent of adults with autism are self-supporting. What happens to the 95% who need support? It could likely mean institutionalization – an alternative that is extremely expensive, much more expensive than treatment, and perhaps unnecessary, if early treatment is made available.

Harder to measure, but also very important, is the fact that the children who receive this treatment can show remarkable improvements that enable them to be part of society and contribute to it. It is an obvious benefit to individuals and society to treat autism rather than ignore it.

Some of you may be aware that I am also involved in the Special Olympics movement. My connection to this movement goes back many years to my first child, Timothy James Alexander Munson, who was born with Downs Syndrome in the late 1960s. He passed away before his first birthday. Being his father for that short time changed me. I learned first hand what it’s like to be a parent to a child with special needs.

If I look back to when Timmy was born, people with Downs Syndrome were routinely institutionalized. They were not considered to be part of society. Thanks to many efforts by many people, and I think thanks in particular to the Special Olympics movement, today we don’t consider people with Downs Syndrome and other mental health problems in the same way. We have come along way and we see these citizens taking their rightful place in our society.

If I look at autism today, I think we are where we were in the 1960s for Downs Syndrome. We don’t support children and families with autism as we should. We don’t make treatment that is known to work universally available. Without blinking, we consider institutionalization as an acceptable course of action. I’m here today to say that we must move forward and make the necessary investments in these children and their families. We can’t afford not to for financial reasons and for moral reasons.

Eugene Levy Says Medicare for Autism Now!

Eugene Levy Speech

Over the years, my family has been hit by the ravages of cancer, heart disease, muscular dystrophy, diabetes, and Alzheimer’s disease. Every one of those afflictions is a worthy cause for wholehearted support. And every one of these afflictions has treatment that is covered by Medicare. The most recent affliction to hit my family is Autism. My cousin Brenda has a son Michael who has been living with this disorder since the day he was born. The treatment for autism is NOT covered by Medicare. Before I get started, I’d like to read a condensed version of an article that appeared in the Vancouver Sun on April 26, one of many installments written by Pete McMartin about a woman named Bev Sharpe who has a daughter with Autism. I think it really personalizes all the numbers and statistics we’ve been hearing about today.

(ARTICLE IS READ)

While autism itself remains a mystery in terms of its cause, what is not mysterious is why we all seem to know someone who has it. The answer is simple… it’s prevalence rate is skyrocketing. Today in Canada and the US, one out of every 94 boys is now being diagnosed with an Autism Spectrum Disorder. This is truly alarming. The US has a plan of action that is already well underway to address what Americans have now recognized as a national
emergency. The COMBATING AUTISM ACT was signed by George W. Bush on December 19, 2006 and with its 2007 budget of over $120 million, is empowering the National Institute of Health, Centers for Disease Control and Prevention, and other American organizations to conduct research into autism, offer early screening programs, raise public awareness and provide evidence-based treatment to those with an autism diagnosis.

We in Canada, have yet to see anything even close to resembling
THE COMBATING AUTISM ACT that will help our nation’s people with autism, like Michael and his family.

I am urging, and so should we all urge our federal politicians to take action and to do so quickly. As a nation, we cannot continue turning our backs on this crisis. It is not going away. In fact, the situation is becoming direr with every passing day. The Supreme Court of Canada has made it abundantly clear that it will not dictate what programs and services out governments should and should not provide, so after several lengthy and exhaustive legal battles including the “Auton” action in British Columbia and the “Deskin- Wynberg” case here in Ontario, families are not further ahead than they were over ten years ago when their legal endeavours began. Provinces continue refusing to step up and provide adequate treatment to their ever-growing autistic populations. Families are losing their homes and life savings in their brave albeit inadequate attempts to provide therapy privately to their autistic children.

Aging parents are struggling to meet the physically demanding needs of their growing or already grown up autistic children and have nowhere to turn in their state of desperate need. Marriage breakdowns are estimated at 75% when an untreated autistic child is being raised in the family home. The emotional and financial impact of autism on siblings is unimaginable.

Canada is urgently in need of a Federal Autism Strategy that will put a stop to this desperate situation. Such a strategy is certainly not a novel idea, as our country has been witness to many other precedents for federally conceived and led health related strategies including the Woman’s Health Strategy in 2999, a National Strategy to Reduce Tobacco Use in Canada, also in 1999, The Canadian Strategy on HIV/AIDS in 2000, the Canadian Partnership Against Cancer Initiative in 2006, and the Health Heart Strategy in 2007 to name only a handful. If we as a nation value our children’s health and well-being, certainly what we ask is neither unreasonable nor extreme.

As the father of two great kids, I can imagine few things more painful for a parent than having a sick child and knowing an effective treatment exists but is not within reach simply because it is beyond the parents’ financial means. In a country where publicly funded healthcare is suppose to be an inherent right of citizenship, there is something terribly wrong when one looks at the plight of Canada’s people with autism. Fortunately, if we work together, we have the means to make things right.

I appeal directly to out federal politicians, regardless of partisan affiliation, to do what is right for these vulnerable Canadians, ones who cannot speak for themselves. I urge Canadians right across this country, to contact their MPs and provincial elected representatives. Let them know you want children afflicted with autism, and their desperate and often destitute parents, to be treated as equals in our society. Autistic individuals, child or adult, like all of us, deserve the chance to be the best they can be.

Thank you.

Autism Research Advance - Researchers Reveal Structure of Protein Altered in Autism

The mainstream media, along with neurodiversity and autism bloggers, are circling the flame of the vaccine-autism "trial". At the end of the day, unless some evidence of conspiracy involving suppression of studies documenting a connection is shown, the trial will probably simply confirm the overwhelming medical and scientific community consensus that there is no causal connection. Meanwhile a real scientific research advance is not drawing anywhere near as much attention - the discovery of how particular genetic mutations affect the protein complex implicated in autism spectrum disorders and contribute to the developmental abnormalities found in children with autism.

Researchers reveal structure of protein altered in autism

As a result of mapping the structure of the protein complex implicated in autism spectrum disorders, a research team led by scientists at the University of California, San Diego (UCSD) Skaggs School of Pharmacy and Pharmaceutical Sciences has discovered how particular genetic mutations affect this complex and contribute to the developmental abnormalities found in children with autism. Their work, published as the cover article in the June issue of the journal Structure, should help scientists pinpoint the consequences of other genetic abnormalities associated with the disorder.

“By understanding the three-dimensional structure of the normal protein, researchers can now make predictions about how mutations in the gene affect the structure of the gene product,” said first author Davide Comoletti, Ph.D., UCSD research associate at the Skaggs School of Pharmacy.

Autism spectrum disorders are developmental disabilities that cause impairments in social interaction and communication. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, interpersonal relationships, and leisure or play activities.

Comoletti and colleagues studied the neuroligin family of proteins that are encoded by genes known to be mutated in certain patients with autism. The neuroligins, and their partner proteins, the neurexins, are involved in the junctions, or synapses, through which cells of the nervous system signal to one another and to non-neuronal tissues such as muscle. These structural studies on neuroligins and neurexins represent a major step toward defining the synaptic organization at the molecular level.

“Normally, individual neuroligins are encoded to interact with specific neurexin partners. The two partners are members of distinct families of proteins involved in synaptic adhesions, imparting ‘stickiness’ that enables them to associate so that synapses form and have the capacity for neurotransmission,” said Palmer Taylor, Ph.D., Dean of the Skaggs School, Sandra & Monroe Trout Professor of Pharmacology, and co-principal investigator of the study, along with Jill Trewhella, Ph.D., of the University of Sydney, Australia and University of Utah.

Incorrect partnering that results when a mutant neuroligin fails to properly align at synapses helps explain why the autism spectrum disorders are manifested in subtle behavioral abnormalities that are seen at an early age.

“Abnormal synaptic development in nerve connections is likely to lead to cognitive deficits seen in patients with autism,” said Taylor. He added that synapse formation and maintenance occurs early in development when the infant brain is still plastic and formative. Therefore, by understanding the structural mutations that affect neurotransmission during development, new leads into drug therapies may emerge.

“We really don’t know what causes autism, but this research represents a solid starting point,” said Sarah Dunsmore, Ph.D., program director with the National Institute of General Medical Sciences, part of the National Institutes of Health, which partly supported the study. “The work suggests that genetic mutations that alter the shape or folding of adhesion proteins in the nervous system influence their interactions. This is another example of how research on basic biological questions, such as the three-dimensional structures of proteins in the brain, can yield valuable medical insights.”

Taylor and colleagues have been studying the structure and function of acetylcholinesterase – a structurally related protein that mediates neurotransmission between nerves and between nerve and muscle – for the past 30 years. They began studying the neuroligins because of the similarity in structure and amino acid sequence with acetylcholinesterase. Source : University of California - San Diego

http://tinyurl.com/2muy5m

http://www.structure.org/


Synaptic Arrangement of the Neuroligin/β-Neurexin Complex Revealed by X-Ray and Neutron Scattering

Davide Comoletti1, 6, Corresponding Author Contact Information, E-mail The Corresponding Author, Alexander Grishaev2, 6, Andrew E. Whitten3, 4, Igor Tsigelny1, Palmer Taylor1 and Jill Trewhella4, 5
1Department of Pharmacology, Skaggs School of Pharmacy and Pharmaceutical Sciences, University of California, San Diego, La Jolla, CA 92093, USA
2National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD 20892, USA
3Bragg Institute, Australian Nuclear Science and Technology Organization, Menai, New South Wales 2234, Australia
4School of Molecular and Microbial Biosciences, University of Sydney, New South Wales 2006, Australia
5Department of Chemistry, University of Utah, Salt Lake City, UT 84112, USA
Received 26 December 2006; revised 13 April 2007; accepted 19 April 2007. Published: June 12, 2007. Available online 12 June 2007.

Summary

Neuroligins are postsynaptic cell-adhesion proteins that associate with their presynaptic partners, the neurexins. Using small-angle X-ray scattering, we determined the shapes of the extracellular region of several neuroligin isoforms in solution. We conclude that the neuroligins dimerize via the characteristic four-helix bundle observed in cholinesterases, and that the connecting sequence between the globular lobes of the dimer and the cell membrane is elongated, projecting away from the dimer interface. X-ray scattering and neutron contrast variation data show that two neurexin monomers, separated by 107 Å, bind at symmetric locations on opposite sides of the long axis of the neuroligin dimer. Using these data, we developed structural models that delineate the spatial arrangements of different neuroligin domains and their partnering molecules. As mutations of neurexin and neuroligin genes appear to be linked to autism, these models provide a structural framework for understanding altered recognition by these proteins in neurodevelopmental disorders.

Author Keywords: MOLNEURO

Structure, Volume 15, Issue 6, 13 June 2007, Pages 693-705

Stephen Harper's National Autism Strategy - Here It Is Folks!

Stephen Harper's response to the autism crisis facing Canada boils down to 2 components, a national autism stakeholders symposium and an autism web site. Yup, that's it. The stakeholders symposium was cancelled because - hold your breath folks - the Government of Canada couldn't find a big enough room in the National Capital Region in which to hold the symposium. That leaves the web site.

So here it is folks Stephen Harper's National Autism Strategy in its entirety right here on this blog page! Take your time, don't rush through it, you might miss something:









Autism

Autism is a complex, lifelong condition that affects a person's development, how his or her brain processes information, and his or her interactions with other people. Signs of autism are usually present by three years of age and it is more prevalent in boys than in girls.

Autism is a spectrum disorder. It is defined by certain behaviours which come in combinations and in degrees of intensity that vary in each child and adult affected. The main challenges of autistic children and adults are related to social interactions, verbal and non-verbal communication, ability to learn (in the usual settings), repetitive behaviours, and unusual or severely limited activities and interests. International studies indicate that about one in every 150-160 children has autism spectrum disorder.
The Government of Canada's Role

The Government of Canada's goal is to promote and preserve the health of all Canadians and for Canada to be among the countries with the healthiest people in the world. To achieve this goal, Health Canada promotes high-quality, scientific research as the basis for its work. Disease surveillance, prevention, control and research are also integral to ensuring the health of Canadians. As with all issues of national importance, Canadians also expect the federal government to facilitate sharing of best practices and expertise.

Management and delivery of health care in Canada is within provincial jurisdiction. Health Canada is responsible for bringing together parties to advance work on health issues of national and inter-provincial concern. Research and surveillance are important building blocks in the development of these best practices. In addition, Health Canada and the Public Health Agency of Canada communicate with Canadians about health promotion to enable them to increase control over, and improve, their health. Health Canada also conducts ongoing consultations with Canadians to determine how best to meet their long-term health care needs.

In regards to autism spectrum disorder, Health Canada will be working with the Public Health Agency of Canada and the Canadian Institutes of Health Research to co-ordinate research, surveillance and education. Health Canada will continue to support individuals with autism, and their families, in the areas of research and policy development. It will also continue to support Canada's health researchers in their efforts to find better treatments for spectrum disorders such as autism. Moreover, the federal government is working to help families and individuals affected by autism and other spectrum disorders to gain access to needed information on programmes, services and benefits for which they might be eligible.
Related Resources

Some of the following hyperlinks are to sites of organizations or other entities that are not subject to theNew Window Official Languages Act. The material found there is therefore in the language(s) used by the sites in question.

* Next link will open in a new window Autism Canada Foundation
* Next link will open in a new window Autism Society Canada
* Next link will open in a new window Canadian Autism Intervention Research Network Site
* Next link will open in a new window Centre of Knowledge on Healthy Child Development (Offord Centre for Child Studies)
* Autism Awareness Month 2006 - Message from Tony Clement, Minister of Health
* Next link will open in a new window Aspergers Society of Ontario
* Next link will open in a new window Autism Ontario
* Next link will open in a new window Autism Services (Saskatchewan)
* Next link will open in a new window Autism Society of British Columbia
* Next link will open in a new window Autism Society of Nova Scotia
* Next link will open in a new window Fédération québécoise de l'autisme et des autres troubles envahissants du développement
* Next link will open in a new window The Summit Centre for Preschool Children with Autism
* Next link will open in a new window Thimerosal in Vaccines and Autism - Questions & Answers
(Public Health Agency of Canada)

For other information on autism, visit the Next link will open in a new window Canadian Health Network.

Conor Water Balloon Fun

It's water balloon season for Conor!!

No Legitimate Public Interest in Autism Case?

"That's the position of your client, the government of Ontario? That the public has no legitimate concern or interest in the degree the Charter protects vulnerable and disadvantaged people?"

- Ontario Supreme Court Justice Maurice Cullity, questioning Ontario government lawyer Robert Charney in a costs hearing involving parents suing the government for treatment coverage of their autistic children.

http://www.thestar.com/article/224246, June 11 2007
http://www.thestar.com/article/223824, June 11 2007

Eugene Levy, Senator Jim Munson Call for National Autism Strategy

Above Left - Eugene Levy , Above Right - Senator Jim Munson


I feel extremely passionate about the need for a National Autism Strategy. Canada is blessed in so many ways but somehow some of our most vulnerable citizens are being wrongfully neglected. It is time to
address this wrong and provide these individuals with the same access to
medically necessary treatment that the rest of us enjoy throughout our
lifetimes under our country's allegedly universal health care system.

- Eugene Levy

It is only when ABA - the most effective, science-based treatment for
autism - is brought under the Medicare umbrella and made available to
Canadians who suffer from this core health need, that we can rightfully claim
to be a nation committed to the values of universal healthcare

- Senator Jim Munson

Actor/Comedian Eugene Levy Gets Serious About Autism - Speaks Out on Need for a National Autism Strategy

TORONTO, June 11 /CNW/ - Canada's highly acclaimed actor, director and
screenwriter, Eugene Levy, is departing from his traditional funnyman role,
but this time there are no scripts, no directors and no film cameras in sight.
"I feel extremely passionate about the need for a National Autism
Strategy", states Levy, who has signed on as a spokesman for the cause and
will be teaming up with Senator Jim Munson for a press conference in Toronto
at 10:00 am on Wednesday, June 13, 2007 at the Intercontinental Toronto
Yorkville Hotel (Portman Room).

"Canada is blessed in so many ways but somehow some of our most
vulnerable citizens are being wrongfully neglected," Levy says. "It is time to
address this wrong and provide these individuals with the same access to
medically necessary treatment that the rest of us enjoy throughout our
lifetimes under our country's allegedly universal health care system."

Autism is included in the World Health Organization's International
Classification of Diseases, Revision 10 (ICD-10) and afflicts individuals of
all races, ethnicities and socioeconomic backgrounds. It is fast becoming a
North American epidemic of staggering proportions. According to the
world-renowned US Centers for Disease Control, one in every 150 children (one
in every 94 boys) is today being diagnosed with an autism spectrum disorder.
It is more common than pediatric cancer, diabetes and AIDS, combined.

While there is no cure for this mysterious yet tragic neuro-genetic
condition, proven effective, science-based treatment for autism does exist. It
is called Applied Behaviour Analysis (ABA), also known as Intensive
Behavioural Intervention (IBI).

Norrah Whitney, the mother of an autistic son and Executive Director of
Families for Early Autism Treatment (FEAT) - Ontario, states,
"Many are forced into privately funded treatment, with a price tag of $70 to $80 thousand per year. Families are losing their homes and cashing in their retirement savings yet are still not able to sustain treatment for their children.
This is nothing other than a two-tiered healthcare system", says Whitney, who
in an ironic twist, is the granddaughter of the late John Leo Whitney, one of
the founding architects of OHIP.

"We need more than a dedicated page on a Health Canada website, or a
'stakeholders' symposium'," states Brenda Deskin, a long-time advocate for
people with autism and plaintiff in the well-known Deskin-Wynberg court
action. "We are seeking equal treatment under the law - the same approach
that has been taken when our country faced other health-related
emergencies. Canada has a crisis on its door-step, one that demands a
concrete and immediate plan of action, one that includes the provision of
publicly funded, evidence-based treatment for people of all ages afflicted by autism."

Levy will be sharing his personal views on autism. The event will also
mark the unveiling of a practical, multi-faceted strategy that, if implemented
by the federal government, would bring autism under Medicare and end the
discrimination against people with autism in Canada.

"It is only when ABA - the most effective, science-based treatment for
autism - is brought under the Medicare umbrella and made available to
Canadians who suffer from this core health need, that we can rightfully claim
to be a nation committed to the values of universal healthcare," states
Senator Jim Munson.

http://www.newswire.ca/en/releases/archive/June2007/11/c3272.html

WAG Autism Group Goes to See Shrek 3 and So Does Conor

WAG, or We Are Going, an autism group in Lawrence Kansas, was scheduled to attend a special showing of Shrek 3 at a theatre in Lawrence yesterday. special accommodations were made for the showing. This sounds like a terrific idea and the WAG group and threatre folks at Southwind 12 Cinema deserve commendation for this great effort at real inclusion of autistic persons. Conor also went to see Shrek 3 here in Fredericton although we went as a family and made no request for accommodations. We did take Conor out when ever he got too stressed but he sat through the previews and saw most of the movie. Judging by his periodic laughter he enjoyed himself. And, of course he enjoyed a treat or two.

There will be a special showing of “Shrek the Third” today for people with autism.

We Are Going, or WAG, a group within the Lawrence Autism Society, has organized the event, which will be at 10 a.m. today at Southwind 12 Cinema, 3433 Iowa.

The theater has been working with WAG to make special modifications such as leaving the lights brighter, lowering the sound and omitting previews.

WAG focuses on bringing families affected by autism out in public. It hopes future destinations could include a swimming pool, bowling alley, museums and churches.

“People with autism are as much a part of our community as everyone else,” said Maria Holter, community director of WAG. “But I don’t think these institutions realize how many people don’t go because they aren’t comfortable.”

http://www2.ljworld.com/news/2007/jun/09/autism_group_see_shrek_theater/?city_local

An Autism Parent's Letter to Morton Ann Gernsbacher

Morton Ann Gernsbacher, Professor of Psychology, President Association for Psychological Science


Centracre mental health facility in Saint John New Brunswick Canada which houses patients with a variety of mental disorders including persons with severe autism. It is not known whether Ms. Gernsbacher has ever visited such a facility to consult with autistic residents of such facilities about meaningful participation in her research efforts.

"Listservs, Yahoo groups, and even Second Life are teeming with autistics’ informed and articulate discussions of autism research — from persuasive deconstructions of their putative lack of mirror neurons, empathy, and theory of mind, to provocative hypotheses about atypical minicolumns, Purkinje cells, and 2D:4D ratios, to book-club-like discussions of the classics. Press releases, conference presentations, and journal articles are devoured and digested, sometimes with burps as simple as “no sh*t, Sherlock” (in response to a Nature Neuroscience publication of mine).

However, autistics are almost never consulted by autism researchers (thereby violating the mantra of disability rights, “Nothing About Us, Without Us”), and often they are explicitly excluded. Ms. Dawson has documented Canadian research conferences that barred autistics from attending but curiously welcomed parents of autistic minors as expert contributors.

Why haven’t autistics’ own voices been heard? Why haven’t autistics been as actively recruited to participate in all aspects of the research process as they’ve been recruited to participate as research subjects (even posthumously by donating their brain tissue)?

Perhaps it’s assumed that autistics just wouldn’t be able to handle high-level research. If so, someone ought to tell Vernon Smith, who was awarded the 2002 Nobel Prize in Economics (alongside APS Fellow Daniel Kahneman) for pioneering the field of experimental economics. And somebody better alert Richard Borcherds, who was awarded the mathematics equivalent of the Nobel Prize — the Fields Medal — in 1998. Both academics are diagnosed autistics. "

- Morton Ann Gernsbacher,
The True Meaning of Research Participation
Observer, April 2007, Volume 20, Number 4

http://www.psychologicalscience.org/observer/getArticle.cfm?id=2147


Dear Dr. Gernsbacher:

Your paper The True Meaning of Research Participation is interesting and thought provoking. As the father of an 11 year old boy who is severely autistic I am somewhat disturbed though by your express identification of autistic persons with the high functioning persons mentioned in the article. Your basic point, that autistic persons should be consulted in research, assumes (1) that all autistic persons are capable of being consulted in a meaningful way or (2) that high functioning persons such as your colleague Ms Dawson, Amanda Baggs, or Jim Sinclair, are representative of the great number of autistic persons, including my son, who do not share their communication abilities. Your article also goes on in a very flimsy way to suggest that objectivity is not an issue when these persons are involved in research. I hope you will not be too offended that I, a mere parent, find your assumptions faulty and your argument flawed.

I will not insult someone of your academic standing in the discipline of psychology by citing studies and reports which indicate that many autistic children do in fact have serious cognitive and communication impairments which render meaningful consultation by such less fortunate autistic persons an impossibility. You know this already although you do not address this point in your article.

I am not as certain though about the second possibility. Your whole article seems to be premised on the belief that Ms Dawson, Ms Baggs, Mr Sinclair and other autistic persons with very substantial communication and comprehension abilities are somehow representative of autistic persons such as my son who have much lower abilities in these areas, who can barely communicate at all, and in many cases, can only do so after years of Applied Behavior Analysis intervention. If that is indeed your assumption then as a parent who has actually lived 24/7 with a severely autistic son for 11 years I have to say I find your assumption to be flawed and not based on any obvious understanding of the realities of autism for persons with more severe cases of autism.

I spoke twice by telephone with Ms. Dawson, albeit briefly, when I was president of the Autism Society New Brunswick. On those two occasions she contacted me seeking access to a copy of a document prepared at the request of ASNB for possible use in litigation. Ms Dawson as you know has very substantial comprehension and communication abilities. What she does not have is much in common with my son or the many low functioning autistic persons who lack basic communication and comprehension. These are two important areas of life. They can literally mean the difference between life and death if, by way of a personal example, a child does not realize that cars will hurt him upon contact.

These differences can mean that dialogue between parent and child, and other persons in the child's life, is extremely limited. These differences mean that many lower functioning autistic persons will live in institutional care for the rest of their lives. This is an existing reality not an academic theory or debate. As a lowly parent, concerned about my son's future, I do not accept your flawed premise that Ms Dawson and others with similar comprehension and communication are sufficiently representative of the autism spectrum of disorders to suggest that autistic person are included in research by virtue of THEIR inclusion.

Your comments about objectivity are disingenuous at best and misleading at worst. Your own colleague, Michelle Dawson, has been a fierce opponent of efforts by Canadian parents to obtain government funded Applied Behavior Analysis treatment for their children. To that end she has appeared as an intervener in the Supreme Court of Canada proceedings in the Auton case and she has appeared before the Canadian Senate Committee which examined autism treatment funding issues in Canada. Ms Dawson's lack of objectivity is documented by her well known comments about parents and organizations seeking treatment for their autistic children:

"“They want autism to be a sickness that needs to be cured,” she said. “They say horrible disgusting things so they can get more money for their lobby groups. They make me sick,” Ms. Dawson said."

- Andre Picard, Globe and Mail, February 20 2006

If you check the internet you can find many more instances of disparaging remarks made by your colleague about parents and politicians seeking ABA treatment for autistic children. I do not share your professional standing. I am simply a parent. And I am a lawyer. Objectivity is also evaluated in my profession. Ms Dawson's public views about autism, and her demonstrated public hostility to parents, professionals and politicians seeking to treat or cure autistic children is more than ample evidence of her lack of objectivity. With respect your homage to Ms Dawson and other agenda driven high profile high functioning autistic persons also demonstrates your own abandonment of professional objectivity.

Ms Dawson has participated in your research as your colleague. Conor Doherty, an 11 year old with Autism Disorder, with profound developmental delays, has not participated and has not been consulted. Michelle Dawson does not speak for my son. Perhaps you, Dr. Gupta, Ms Dawson and Ms Baggs can make a visit to some mental health institutions where they care for youth and adult lower functioning autistic persons less fortunate then your friends. And please, revisit the quaint notion of objectivity while you are there.

Respectfully,


Harold L Doherty
Fredericton New Brunswick
Canada

Autism Speaks Canada - Ontario Walk 2007 Raises $542,908

"Autism Speaks Canada has raised more than a half million dollars for autism research with its 2007 Ontario Walk. In 2006 Autism Speaks Canada raised over $1,000,000.00 for Canadian Autism researchers. A detailed list of research projects funded by Autism Speaks Canada can be found on the Autism Speaks Canada pages of the Autism Speaks website. Autism Speaks Canada describes its mission and strengths:

Autism Speaks Canada aims to bring the Canadian autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.

...

The Autism Speaks Canada Board of Directors has begun and continues on its path to develop a strategic plan to raise funds through Walks and other special events and initiatives across the country to support Canadian and global autism research and to raise awareness of autism throughout Canada.

Using our strong partnerships with the Canadian Autism Research Community, Autism Speaks U.S., government, families, service providers and community agencies from across Canada, we will make a positive difference in the lives of everyone living with an Autism Spectrum Disorder.

Families in Canada have seen firsthand, what a strong collective voice of autism in the United States has accomplished in advocacy (The Combatting Autism Act); awareness (the Ad Council Campaign & Autism Everyday Video) and research funding. Autism Speaks has led the way in each of these and other areas."

Autism Speaks Canada has achieved some impressive fundraising efforts for autism research in Canada and is a welcome addition to the Canadian Autism community.

No Joy of Autism, A Mother Tells of Daily Life With Autism

Sigourney Weaver may be looking for her "inner" autism. Parents of autistic children do not always have that luxury and most would not seek to find their "inner" autism or any other autism if they had a choice. But we do not have any such choice.

As parents, we know first hand the truth about autism. We experience the reality every minute of every day. We do not have to go searching for autism as some type of flaky Hollywood enlightenment trip. Autism has knocked on our doors, it has knocked our doors down and it has taken much of what we hope for in our children. We love our children dearly. That is why we feel the realities of autism so deeply. Our autistic children do not experience life fully the way Ms. Weaver does. She can hang out with some high functioning autistic adults and experience her inner autism with them. As parents we have to live with, and help, our children overcome their serious challenges to the best of our abilities and try not to think constantly about what will become of them when we are gone.

Denise Pavone-Brooks is not a flaky Hollywood actress but she is the mother of an autistic child and she has plenty to say about the reality of autism. Maybe Sigourney Weaver could take time from searching for her "inner" autism to read and think about what this mother has to say:

The Emotion of Autism

Daily life with an Autistic Child.

by Denise Pavone-Brooks
June 9, 2007 12:54 pm ET


As a young and ignorant mother, I feared autism. I thought, as most of us do (or hopefully, did), that it involved a child totally consumed in his own world that spent his day rocking back and forth. It wasn't until my verbal and affectionate three-year-old son was diagnosed that I realized how wrong I was.

However, there is still reason to fear autism. There's no cure. And since no one dies from it, the search for a cure or even an effective treatment has been painstakingly slow. Autism is horrible. It has robbed my son of all the things a child should have - soccer games, birthday parties, academic achievements - You get the idea. It broke apart my family. His older sisters will probably have to care for him after his parents die.
Last week, my old handsome son (now ten years old) exhibited "mal-adaptive" behaviors, which resulted in gifting me with the pleasurable sensation of two bites, several head butts, kicks, slaps and hair-pulling. One bite was through the skin, so I had to get a tetanus shot. I refused to go to the doctor until I was certain the bite would not be reported to the authorities.

There are happy times, but probably not what you'd expect. For instance, he loves to play with ribbon or anything long that he can pull through his fingers. He likes to bring his ribbon (which he calls "string") with him when we go places. Most kids grab a teddy bear – my kid is cuddling a messy ball of ribbon. He also loves water – either being in it or watching its movement – it doesn't matter. I've wondered if he shouldn't have been a fish. He likes animated movies, and will watch his favorite scenes over and over again (damn that rewind button!). But the coup de grace is French fries. No one is allowed to say the "F" word around him unless we KNOW we are going to get French fries! In fact, on his birthday, I put the candle in his French fries instead of in a cake.

One of my most tender experiences occurred a few months ago, when he had learned how to tie his shoes by himself. In the beginning of my weekly women's church meeting, we have an opportunity to share any good news with our sisters. Impulsively, I raised my hand and announced, "My nine year old autistic son learned how to tie his shoes." A chorus of happy gasps and wild applause filled the air. Still brings tears to my eyes when I think of it.

I love my son more than words can express. My heart aches for him. At this point of despair, I have two choices: I could be forever bitter, or I could hope for better things. I guess I'm doing some of both. I have to admit I'm somewhat bitter, but I try not to spend too much time on the "why us?" question, or play the "blame game." That's just not a productive or positive use of my time. The rest of my activities are guided by my love for him and my religious faith. I do believe my son has a one-way ticket to a glorious after-life, and if I want to be there with him, I need to act as if I deserve it here.

You are probably wondering why I cannot control my child. The truth is, he cannot help it. He is brain damaged. No amount of behavior modification will completely "fix" his brain. He is unhappy. He does not know why he is unhappy, which makes it worse.

What is the point to this article? I'm not sure, except that I feel a little better for writing it. In fact, I think I will write on a regular basis. Maybe it will help others in a similar situation, maybe it will help me cope, but mostly I hope it will help people with autism and their families.

http://www.partialobserver.com/article.cfm?id=2441&RSS=1

Autism Heroes and Zeros No. 1

Autism Zero - South Carolina Governor Mark Sanford who vetoed legislation to require insurance companies and state health plans to cover autism



Autism Heroes - Legislators in the South Carolina Senate and House of Representatives who voted to override Governor Sanford's veto


This post is the first in a series about autism heroes and zeros. First on the list of autism zeros is South Carolina Governor Mark Sanford who vetoed autism legislation. The heroes in the story are autism moms Marcella Ridley, Lorri Unumb and Lisa Rowlings and the SC House and Senate legislators who voted to override the governor's veto.


COLUMBIA, SC (WIS) - Governor Mark Sanford has vetoed the autism bill, but the legislature overrode that veto. Both the House and the Senate voted in support of the bill Thursday.

The governor said he vetoed it because it would raise health care costs, "Well right now the mandates we've got presently in the system cost us all about $500 a year in insurance coverage. For the working family, $500 added to the price of of your insurance is enough to keep many from getting insurance in the first place. What happens today adds about $50 for a family."

Marcella Ridley spoke to WIS earlier in the week about the bill, "I never thought I'd be sitting here on June fourth - I didn't. I'd be lying if I said I wasn't disappointed in that."

People call Marcella Ridley, Lorri Unumb and Lisa Rowlings the angels for autism. For two years, the ladies have spearheaded the fight for legislation they believe will help autistic children. Their reasons are personal. Each of the ladies has an autistic child.

Marcella's little guy is named Winston, and the bill is actually named after Lorri's son Ryan.

"These are three moms on a mission," says Senator Joel Lourie. It's a mission the senator has spent a lot of time on. He says the bill would improve treatment options for kids with autism.

And while he says at first insurance companies were hesitant to cover the costs, now everyone has signed off on it, everyone except the governor.

http://www.wistv.com/Global/story.asp?S=6611170&nav=0RaPTfSq

Autism Society of America To Honor CARD Founder Doreen Granpeesheh

The Autism Society of America will present its top honor to Dr. Doreen Granpeesheh, founder of the Center for Autism and Related Disorders. With all the junk treatments and interventions for autism that desperate parents and cash conscious governments and service providers have latched on to, with all the false guidance from those who oppose efforts to treat and cure autism, the role of professionals like Dr. Granpeesheh has been of critical importance in ensuring that autistic children receive effective treatment. Dr. Granpeesheh will receive the Wendy F. Miller National Recognition Award for Professional of the Year -- at the organization's 38th annual national conference and exposition July 11-14 in Phoenix. The ASA recognition highlights the important role of the Center for Autism and Related Disorders:

Founded by Dr. Granpeesheh in 1990 and headquartered in Tarzana, California, CARD excels in early intervention, intensive Applied Behavior Analysis therapy and research. Through a highly specialized curriculum for both early intervention and through the early stages of adulthood, Dr. Granpeesheh has consistently demonstrated the effectiveness of ABA intervention. ABA is an intensive one-on-one style of therapy that uses careful observation and positive reinforcement to help autistic children develop social, motor and verbal skills. It is also the only approach that has been scientifically verified as effective in treating autism.

CARD now has 18 satellite sites around with world: Nine in California as well as sites in Virginia, New York, Texas, England, Australia, New Zealand and now Arizona.

http://sev.prnewswire.com/health-care-hospitals/20070607/LATH10807062007-1.html



Center for Autism and Related Disorders, Inc. (CARD) is among the world's largest and most experienced organizations effectively treating children with autism and related disorders. Following the principles of Applied Behavior Analysis (ABA), a treatment for autism that has been thoroughly researched and empirically validated by the scientific community, CARD develops individualized treatment plans. CARD was established in 1990 and has several offices throughout the world. With our network of trained supervisors and therapists, we can provide services to families throughout the world.

http://www.centerforautism.com/

Andy Scott Speaks On Autism In House of Commons

Fredericton MP Andy Scott continued his efforts on behalf of persons with autism with this statement in the House of Commons yesterday, June 5, 2007.

Autism

[Table of Contents]

Hon. Andy Scott (Fredericton, Lib.):

Mr. Speaker, it is regrettable that we have seen little action by the government toward implementing a national autism strategy.

It has been more than a year since I introduced Motion No. 172. My private member's motion called for evidence based standards, innovative funding arrangements for diagnosis, treatment and research, and a national surveillance program.

The motion was adopted in good faith and supported by the government. However, it was very disappointing to see no reference to a national autism strategy in the recent budget or any discussion this spring.

Recently, I joined my colleagues from Charlottetown and Sackville—Eastern Shore and Senator Munson at a rally in Halifax that reinforced that there are families with autistic children across Canada who need the government's help.

The Conservatives should move off their default position of jurisdictional excuses, show creativity and compassion and start helping these Canadians.

An Autism Question for the Hon. Stephane Dion

2007-06-05

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

Dear Mr. Dion

An Autism Question

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

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

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

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

Respectfully,


Harold L Doherty
Fredericton
New Brunswick

cc The Canadian Public

Australian Government - Zero Effort for Autism

The Government of Australia, like the Government of Canada, is doing nothing to help the cause of autistic children and their families. Absolutely nothing as this exchange originally broadcast on the Australian Broadcasting Corporation reveals. Australia and Canada are two of the most prosperous countries in the world. Our societies share values which include respect for life, for individuals, and a tendency to help those less fortunate - except when it comes to autism. Even though early ABA intervention has been shown to save governments money in the long run the governments of these two otherwise socially conscientious nations refuse to assist the plight of autistic children who could be helped to live a substantially higher quality of life. The governments of Australia and Canada should both hang their heads in shame.

Calls for Government support for autism

Australian Broadcasting Corporation
Broadcast: 04/06/2007
Reporter: Mark Bannerman

...

MARK BANNERMAN: These families are not alone.

Right now it's estimated that up to 120,000 Australians are autistic and over 10,000 of them are under 12.

Faced with these kinds of figures, you might think that autism would be a major Government priority. Well not quite.

How many marks out of ten would you give us as a society in terms of the way we deal and assist people who get this diagnosis?

DR JACQUELINE ROBERTS, SYDNEY UNI: Oh, zero, absolutely zero.

MARK BANNERMAN: Zero?

DR JAQUELINE ROBERTS: Zero effort.

MARK BANNERMAN: It is little wonder parents of children dealing with autism feel abandoned. This year, the Federal Government released a major report on the treatment of this condition. That report made it clear the preschool children needed 20 hours therapy a week.

Tellingly, it noted right now, the average is 2 to 3 hours a week.

Dr Jacqueline Roberts is the co-author of the report.

I mean, is there any possible justification for allowing that kind of gap to continue?

DR JACQUELINE ROBERTS: I don't think there is. I really think, even if you look at it from a purely economic point of view, it is hard to justify not doing it, because it is cost effective to do it.

http://www.abc.net.au/7.30/content/2007/s1942203.htm

Goody Bledsoe Book Signing June 9, 2 PM Chapters Fredericton

Heather Doherty, AKA Conor's mom, will be signing copies of her book "Goody Bledsoe" this Saturday, June 9, from 2 to 4 pm at the Chapters book store, Regent Mall, Fredericton.

Some comments on Goody Bledsoe:



“Heather Doherty has written an exceptionally moving and brilliant first novel, a startlingly permanent novel that must be read.”

- David Adams Richards


"The storytelling is not trendy but traditional, even universal.
It is not dissimilar to the works of David Adams Richards, and
like them, the story is an engaging and a moving one."

- reviewed by TISH PACEY

The Daily Gleaner, Fredericton, March 17, 2007

Goody Bledsoe and her little brother have been on her aunt and uncle's New Brunswick farm just three days. In the face of Aunt Jackie's drill-sergeant authority, it's the pigs and Uncle Nathan who offer the warmer glimpse of a world that might be called home. By this point (20 pages in), there has already been ample cause for tears, none of them quite spilling.

The emotional control of Goody and her terminally ill mother is also their author's containment. Sadness brims, but is held in check by Doherty's ironies. I was hooked.

JIM BARTLEY, Globe and Mail, April 14, 2007