Oromocto First Nation's Young Heroes

The focus of this blog site is autism, day in day out, it is about autism. Occasionally, for various reasons, I like to mention something other than autism. Today is one of those days.

In the Greater Fredericton area where I live our community recently endured, and victims suffered, a rash of swarming assaults by some cowardly young people. The assaults had a very negative effect, for a while at least, on our perception of every day life in the Fredericton area. Now comes word of something completely positive, something very uplifting and courageous from the nearby Oromocto First Nation where a group of young people from that Maliseet Indian community risked their own lives to save a 60 year old gentleman who was literally burning to death in his apartment. The courage and concern for others shown by these four young people from the Oromocto (Wel-A-Mook-Took) First Nation is uplifting. They are a credit to themselves, their familes and their community. The url for the web site for the Oromocto First Nation:


http://www.oromoctofirstnation.com/pages.asp?pid=1

The story, as reported by CBC New Brunswick:

http://www.cbc.ca/canada/new-brunswick/story/2007/07/30/nb-oromoctorescue.html

Four young Oromocto, N.B., men are being hailed as heroes after rescuing a 60-year-old man from a house fire early Monday morning.

Nick Lanigan, Ryan Atwin, Evan Green and Mike Cruze are from the Oromocto First Nation.

RCMP Cpl. Gilles Blinn says the boys aged 15 to 17 were driving down Broad Street in the town outside Fredericton at 2:30 a.m. when they noticed an apartment on fire at 101 Lanark St.

"The apartment was a basement apartment that was engulfed in flames," he said Monday. "The young males kicked the door down and hauled the occupant to safety."

"Me and my friend Evan just walked up to the window, and then we saw these crutches moving and stuff and we were, like, 'is anybody in there?'" said Nick Lanigan.

"We were yelling at the top of our lungs, and we heard 'Help, help me,' so then this other buddy that with us, Michael, he kicked the door down and [the victim] was just laying right there, burning."

Police say had the boys not bashed in the door, the man, who suffered severe burns, would have died.

"The RCMP and the Oromocto fire department credit the quick action of these young men with saving the man's life," Blinn said.

Lanigan says he doesn't think he's a hero, and anyone would have done the same thing.

The name of the victim isn't being released until the family is notified.

Study Suggests Possible Autism Pesticide Link

The LA Times reports on a study, published in Environmental Health Perspectives, suggesting a possible causal link between pesticides and autism. The LAT is careful to point out that the study used a small sample size, that the California Department of Public Health which conducted the study is only characterizing the results as preliminary data indicating that there MAY be an association between the pesticides which were the subject of the study and incidents of autism.

Women who live near California farm fields sprayed with organochlorine pesticides may be more likely to give birth to children with autism, according to a study by state health officials to be published today.

The rate of autism among the children of 29 women who lived near the fields was extremely high, suggesting that exposure to the insecticides in the womb might have played a role. The study is the first to report a link between pesticides and the neurological disorder, which affects one in every 150 children.

But the state scientists cautioned that their finding is highly preliminary because of the small number of women and children involved and lack of evidence from other studies.

"We want to emphasize that this is exploratory research," said Dr. Mark Horton, director of the California Department of Public Health. "We have found very preliminary data that there may be an association. We are in no way concluding that there is a causal relationship between pesticide exposure of pregnant women and autism."

The two pesticides implicated are older-generation compounds developed in the 1950s and used to kill mites, primarily on cotton as well as some vegetables and other crops. Their volumes have declined substantially in recent years.

Examining three years of birth records and pesticide data, scientists from the Public Health Department determined that the Central Valley women lived within 500 meters, or 547 yards, of fields sprayed with organochlorine pesticides during their first trimester of pregnancy. Eight of them, or 28%, had children with autism. Their rate of autism was six times greater than for mothers who did not live near the fields, the study said.

- LA Times, July 30, 2007

Autism Stakeholders' Symposium - Where The Heck Are You?

Watching Dr. Seuss's Pontoffel Pock, Where Are You? video on Youtube with Conor for the kazillionth time I started thinking about other people and things that had gone missing and I thought of the Autism Stakeholders' Symposium which had been one of the corner stones of the feeble National Autism Strategy of Prime Minister Stephen Harper. A one page web site and a national autism stakeholders symposium. It is difficult to imagine a weaker response to Canada's national autism crisis but Harper watered down his already incredibly weak response by canceling the stakeholders' symposium. Why?

Purportedly because the federal government, which can handle the logistics of sending Canadian troops and armaments to far parts of the world, could not locate a big enough room in which to stage the event. The largest purchaser of convention space in the National Capital Region couldn't find a big enough room. Does anyone actually believe that nonsense? I don't. I admit it. I do not believe the Government of Canada could not find premises in which to house the Autism Stakeholders' symposium. I do not believe that the Government of Canada was telling the truth about its reasons for canceling the Autism Stakeholders' Symposium.

OK, so why was the symposium canceled? The real reason the Government of Canada canceled the symposium was because it heard that serious autism advocates were going to be attending as autism community representatives. The old, complacent, Autism Society of Canada leadership that had nodded in agreement with the federal government's position that the federal government should stay out of autism issues, was gone. New leadership at the ASC was nominating a delegate crew that would include some of Canada's most outspoken autism advocates. Not much opportunity for a good PR photo op and spin job when you have to deal with parents who have for years been writing letters to government and media, holding signs in protest outside government buildings and going to court seeking inclusion of autism treatment in Canada's national health care plan. With no PR upside and plenty of potential for a PR fiasco the government of Stephen Harper "postponed" the symposium.

No word has yet emerged of a replacement date for the "postponed" autism stakeholders' symposium. The Harper national autism strategy is now just a one page web site, with information that could be found with the simplest Google search, and nothing more. Mr. Harper might as well have announced he was "postponing" the hopes of a generation of families with autistic children living in the less affluent regions of Canada. For these autistic children there is just not enough room in the heart of Stephen Harper.

Stem Cell Therapy for Autism

The Institute of Cellular Medicine explanation of stem cell therapy for autism.

Stem Cell Autism Treatment Proposal

More fascinating developments in autism research are brought forward with publication of a peer reviewed open access article in the Journal of Translational Medicine 2007, 5:30. The authors propose the use of stem cells to treat autism. Translation Medicine refers to a field of medicine which attempts to convert research into actual treatment for patients, a joining of research and clinical practice of medicine. The proposal is premised on a consistent association of autism with immune abnormalities and neural hypoperfusion (decreased blood flow). The authors speculate that stem cells might be used to stimulate repair of neural damage.

Four of the authors are associated with the Institute of Cellular Medicine which indicates that it is now accepting some autistic patients for stem cell therapy:

Stem Cell Therapy is Available Now The Institute of Cellular Medicine (ICM) is currently accepting patients with the following conditions for stem cell therapy:

ALS Autism Autoimmune Diseases Cardiovascular Disease

Cerebral Palsy Diabetes Type 2 Multiple Sclerosis

Parkinson's Disease Rheumatoid Arthritis Stroke

http://www.cellmedicine.com/

Stem Cell Therapy for Autism Thomas E Ichim¹ , Fabio Solano² , Eduardo Glenn² , Frank Morales² , Leonard Smith² , George Zabrecky³ and Neil H Riordan^{1 ,4 1}Medistem Laboratories Inc, Tempe, Arizona, USA ²Institute for Cellular Medicine, San Jose, Costa Rica ³Americas Medical Center, Ridgefield, Connecticut, USA ⁴2027 E. Cedar Street Suite 102 Tempe, AZ 85281, USA
Journal of Translational Medicine 2007, 5:30 doi:10.1186/1479-5876-5-30

Autistic disorder, or autism is the most common form of ASD. Although several neurophysiological alterations have been associated with autism, immune abnormalities and neural hypoperfusion appear to be broadly consistent. These appear to be causative since correlation of altered inflammatory responses, and hypoperfusion with symptology is reported. Mesenchymal stem cells (MSC) are in late phases of clinical development for treatment of graft versus host disease and Crohn's Disease, two conditions of immune dysregulation. Cord blood CD34+ cells are known to be potent angiogenic stimulators, having demonstrated positive effects in not only peripheral ischemia, but also in models of cerebral ischemia. Additionally, anecdotal clinical cases have reported responses in autistic children receiving cord blood CD34+ cells. We propose the combined use of MSC and cord blood CD34+cells may be useful in the treatment of autism.

http://www.translational-medicine.com/content/5/1/30

http://www.translational-medicine.com/content/pdf/1479-5876-5-30.pdf

Heather Doherty Reviewed on Prairie Fire and AU World

Conor's mom, Heather Doherty, has now been featured on au.world and her first novel Goody Bledsoe has been reviewed on Prairie Fire Review of Books. Conor's autism did not prevent her from completing her education with a degree in English literature from Athabasca University or from publishing her first novel "Goody Bledsoe" which is NOT about autism.


http://au.world.athabascau.ca/200707/htdocs/student_success.php

http://www.prairiefire.ca/reviews/doherty_bledsoe.html

The Most Difficult Autism Questions

At the end of the day all the furious debates are of little weight. Cause, awareness, treatment - all the heated arguments fizzle away. The banter of the irrelevant academics who busily devise tests to "prove" that autistic persons actually have superior intelligence and the annoying posturing by some neurodiversity advocates who claim to know better than parents what is necessary to help our autistic children are all flushed away.

Endless debates about the politically correct way to describe autistic persons, whether we should even publicly mention intellectually challenged autistic people like my son Conor. The hand wringing over such burning issues as whether it is appropriate to describe genetic mutations as "accidents". For this parent of a severely autistic child these arguments appear to be nothing more than empty noise.

Even the incredible joy that Conor brings into our lives each day, the smile that lights up anyone who sees it, the exuberance that propels him skyward as he runs, jumps and flies down the walking trail with Dad struggling to keep up; all give way to the most difficult autism questions.

Where and how will Conor live when we, his parents, are gone. Will he enjoy his favorite things? Will he be able to stim with straws and water filled balloons? Will he have access to computers to watch Pinky Dinky Doo, Pontoffel Pock and the Hoober Gloob Highway?

Will anyone truly care about him? Will Conor be happy when we are gone?

For Conor's Dad, these are the most difficult autism questions; questions for which I have no answers.

Mississippi Establishes Division of Autism Spectrum Disorders

The autism news has been dominated, until recently, by the professional misconduct hearings of Dr. Andrew Wakefield and the "vaccine court" proceedings in the US and now the exciting Cold Spring Harbor Laboratory study offering a unified theory of autism causation. A less dramatic but interesting autism public policy development has taken place in the State of Mississippi where that state has established an Autism Spectrum Disorders division of its Mental Health department. This sounds mundane beside the dramatic developments mentioned above but it seems to show a real commitment by the State of Mississippi to address the autism health crisis in that state. Such a demonstration of commitment should not go without recognition.

In New Brunswick Canada our province does not have a separate Mental Health Department let alone an Autism Spectrum Disorders division of its Health Department. New Brunswick did have an interdepartmental review of its existing autism services which completed its efforts and published a report in 2001. There have been some very positive developments in pre-school interventions since then in New Brunswick. Education is now just beginning to provide a real education to some autistic students, but adult residential care and treatment remain abysmal. But many of the recommendations of that 2001 interdepartmental autism report in New Brunswick were literally ignored. Some them are now outdated.

The fundamental promise of the 2001 IDC Autism Report in New Brunswick, a commitment to provision of evidence based services is not fully respected even, unfortunately, in the provision of preschool autism interventions in New Brunswick. The consequences of that failure will not be borne by the interest groups that stubbornly insist on implementation of non-evidence based interventions in New Brunswick or the public servants and politicians who defer to those groups. The consequences will be borne by the autistic children who could have benefited from evidence based effective autism intervention but were denied the opportunity.

The chance of seeing a stand alone Mental Health department in New Brunswick is slim to none let alone an Autism Spectrum Disorders division of such a department. But it would be of great benefit to autistic children in New Brunswick if the 2001 commitment to evidence based intervention were honored and prevailed over ignorance and vested interests.

In the meantime the State of Mississippi is providing some interesting organizational lessons that might be worthy of study by the Province of New Brunswick and other Canadian provinces.



http://www.clarionledger.com/apps/pbcs.dll/article?AID=/20070723/NEWS/70723033

July 23, 2007

Division of autism established at DMH

The Clarion-Ledger

The Mississippi Department of Mental Health (DMH) recently established a new division concentrating on autism in Mississippi. The Division of Autism Spectrum Disorders will initially focus its work around the newly formed Caring for Mississippi Individuals with Autism Task Force.

DMH was designated as the lead agency in HB 1267 which created the task force. The bill charges the group with reviewing the current state of services and practices and in turn filing a report making recommendations to the Legislature on its finding by Dec. 1, 2007. The recommendations made by the task force will address the areas of medical, educational and early interventions services. Further attention will be given to services across the lifespan of an individual and the preparation of professionals in the field for future service delivery.

Once the task force has made its recommendations, the Division of Autism Spectrum Disorder begins its long term function creating a Mississippi support system capable of serving Mississippians. This work will address the needs of individuals from birth throughout their life. The Division will work with other agencies to help improve existing services and create new ones.

Autism is the second most common developmental disability in the country second only to mental retardation. It is four times more common in boys than girls and present data has been offered by the Centers for Disease Control and Prevention stating that 1 out of every 150 children born is affected by an autism spectrum disorder. Autism is a neurological disorder. There is currently no known cause and no known cure. Autism knows no racial, ethnic, social boundaries, family income, lifestyle, or educational levels and can affect any family, and any child.

Autism Pro and Autism Self Promotion

There is nothing wrong with self promotion. It is a necessary element of survival and progress in the real world. When self promotion arises in respect of a product aimed at providing health and education interventions for children with a serious neurological disorder like autism though it is critically important that self promotion be accompanied by a proven effective and reliable product. Autism Pro is a product offered by Virtual Experts Clinic a New Brunswick based company, despite its CEO's Aussie origins, which is an aggressive and astute self promoter. It's PR releases and web page are a compliment to VEC's Public Relations staff. The web site, in particular, is pretty as can be, with soft reassuring purple colors, icons with nice rounded corners, very stylish stuff. There is no doubt that AutismPro is very good at Autism Self Pro-motion. But what of the products it sells?

On that very important element the concerns that I have expressed since being exposed to Autism Pro in its conceptual stages remain and are in fact compounded by AutismPro's aggressive expansion into the area of training teachers and aides who work with autistic children. My concerns include delivery of an eclectic mix of interventions, including non-evidence based interventions, and to a lack of accountability for the results of product use. The expansion into education training has taken place, to my knowledge, without completion of research trials underway in respect of the primary Autism Pro product offered to families with autistic children. Education departments are now being solicited to purchase the AutismPro for Educators product even before completion of the research trials on the basic product.

"Dr Holden is currently undertaking a research trial consisting of 46 families across Ontario, including 63 adult care providers and 52 children aged 2 to 9, using AutismPro. The study is being done in partnership with Autism Ontario and Autism Spectrum Disorder - Canadian American Research Consortium (ASD - CARC) out of Queen's University. Participants have been provided with a one year subscription to the program."

AutismPro, Press Release, December 12, 2006

Dr. Holden is a respected autism expert in Canada. She is also an AutismPro research partner. She has already gone on public record as supporting AutismPro and the inter-net as a means of delivering autism interventions. Given her existing opinion, publicly stated, her objectivity in conducting the research trials is open to question. In the meantime I have seen no publicity notices or research articles from VEC or Dr Holden announcing the results of the "research trials". Yet, education departments, ever on the look out for cheap solutions to the demands for education of autistic students, and easily impressed by the glamor and ease of an inter-net solution, will likely be willing customers, particularly when some of the public servants deciding how education staff will be trained are predisposed to technological solutions and lack basic understanding of autism and autism interventions.

Virtual Experts Clinic is good at promoting AutismPro. But is it promoting the best interests of autistic students? Unfortunately, there is no evidentiary basis with which to answer that question.

A Unified Autism Theory - Genetic Without Being Heritable

The proposed Unified Autism Theory is another major paradigm shift in theories of autism causation. For a lay person like me, it challenges my understanding of genetics and heredity. Essentially the cause, or causes, of autism, can be genetic based without being heritable, arising from spontaneous mutations resulting in losses of genetic code and an inability to produce sufficient protein. The theory also suggests that there may be two classes of families, low-risk and high risk. New early treatments may be developed. But, as with any new theory, more data will be required to test the theory to determine the extent to which it is right or wrong.









http://tinyurl.com/2jx5ma

In work that may one day lead to earlier detection of children at risk of developing autism, a team of scientists has devised a genetic model for the enigmatic disorder. The two-tiered theory integrates families with one or more autistic children. An estimated one in every 150 children born in the U.S. develops autism, according to the Centers for Disease Control and Prevention (CDC); it is four times more prevalent in boys than in girls. The condition is characterized by cognitive deficiencies and symptoms ranging from antisocial (not responding to one's name and / or avoiding eye contact) to obsessive, repetitive behavior. The most popular theory about its genesis is that there are flaws in several genes passed down through generations of a family that culminate to predispose a child to the disorder, especially if exposed to certain environmental factors such as toxic chemicals or a lack of oxygen at birth. "People thought there was this uniform risk—if you have an autistic child, then there's some uniform, but fairly low, risk that you'll have another one," says Michael Wigler, a professor of genomics at Cold Spring Harbor Laboratory (CSHL) in Long Island, N.Y., and senior author of the new model described in Proceedings of the National Academy of Sciences USA. "None of the population geneticists, in my experience, had thought that there might be two classes of families: low risk and high risk."

Wigler's rethinking of autism's cause stems from an exhaustive analysis of risk based on a database of families with more than one autistic child. (The Autism Genetic Resource Exchange, or AGRE, manages the database.) The team determined that most cases of autism arise from novel, spontaneous mutations passed down from one or both parents, resulting in large gaps in a person's genome often encompassing several genes, which are then disrupted or inactivated. (This loss of genetic code—known as copy number variation—results in an offspring receiving only one of the standard two copies of a gene, which could cause an insufficient amount of protein to be produced by those genes.) In most instances, this mutation will result in an autistic child. However, in some cases—more likely in girls than boys—the recipient of this mutation will not produce any symptoms.

"When that child matures and becomes a parent, they have a 50 percent chance of transmitting … [their mutation] … to a child that might not be as lucky as they were, especially if … [its] … a boy," Wigler says. "So, they will be transmitting this with close to a 50 percent frequency—and that is the source of the high-risk families."

Wigler says that the team will continue to update its model as new figures are added to the AGRE database and try to gain new insight into the mechanism that gives girls greater resistance than boys. "To understand that [disparity] at a molecular or genetic level would be very important, because you could theoretically treat kids … you could detect something early and intervene," Wigler says. "I view it as the most important thing to understand."

Maja Bucan, an associate professor of genetics and gene variation at the University of Pennsylvania, says that the new autism model is a creative way to interpret the familial data. "It's important to come up with new theories and then just test them once we have more data," she explains. "I don't think we have enough data [yet] to say whether this theory is right or wrong."

According to Wigler, the new model "certainly changes the way you think about autism. The paradigm shift is … something can be genetic without being heritable. The field has ignored the contribution of spontaneous mutation for a whole range of things that matter a lot to society," which, he adds, includes schizophrenia and morbid childhood obesity.

A Unified Theory of Autism?

The Autism Knowledge Revolution is picking up pace and seems at times to be adding to our knowledge of autism on a daily basis. A new study offers a genetic mutation model of autism acquisition which the scientists involved suggest may help unify some of the current disparate theories of autism. The theory involves mothers acquiring and passing on autism related genetic mutations to their children. The mutations are spontaneous, arising from assaults to chromosomes. The assaults can arise from a wide range of unspecified environmental facts including naturally occurring cosmic rays and environmental toxins and contaminants. In addition to maternal transmission of the autism related genetic mutation older moms are indicated as being more likely to have an autistic child according to this study by geneticists at Cold Spring Harbor Laboratory. Scientists from the Kennedy Krieger Institute and the Albert Einstein College of Medicine in the Bronx collaborated in the study. The data network developed by iancommunity.org also assisted the reasearchers in the study. This purported Unified Theory of Autism seems to fit with the autism research paradigm shift mentioned in an earlier post. Environment versus genetics as competing and conflicting theories of autism causation seems to be giving way to environment and genetics as a unified theory of autism develops.

From Newsday.com:

http://tinyurl.com/2mc92b

A new model for understanding how autism is acquired and passed from one generation to the next is being offered as a grand unification theory that links other theories and illustrates how women play a key role in transmitting the disorder, scientists reported yesterday.

Geneticists at Cold Spring Harbor Laboratory have been on a genome-wide hunt to pinpoint the genes that cause autism, a brain disorder that usually appears within the first three years of life and can result in difficulties in learning, language and social interaction.

As part of their search, geneticists at the laboratory have collaborated with scientists at Albert Einstein College of Medicine in the Bronx and crafted a working theory of the disorder to aid not only scientists, but also physicians and families coping with autistic children.

"We're really unifying a field that people didn't realize needed unification," said Cold Spring Harbor molecular geneticist Michael Wigler, who, along with his colleagues report results of their research in the Proceedings of the National Academy of Sciences.

What Wigler and his team found is a previously unrecognized pattern: Mothers, they say, acquire genetic mutations spontaneously that are specific to autism, which can be passed to their children. The mothers do not themselves exhibit traits of the disorder, but they have a 50 percent chance of transmitting the trait.

Wigler describes spontaneous mutations as significant assaults to chromosomes that alter the function of genes. In addition to mothers playing a key role transmitting the autism-related mutations, Wigler said older mothers are more likely than younger ones to have an autistic child.

Genes can be damaged, he said, by cosmic rays that occur naturally, toxins and a vast array of environmental contaminants that have yet to be identified.

"There's very definitely a male/female disparity in autism," Wigler said, but there is still isn't strong evidence explaining why boys are more affected than girls. Boys are three times more likely than girls to develop the condition, Wigler said.

Paul Law of the Kennedy Krieger Institute in Baltimore, a collaborator on the project and the father of an autistic son, said hunting down genetic clues to autism will offer clarity in the face of a mystifying condition.

He and his wife, Kiely, developed iancommunity.org, a database that not only helps families but also aided Wigler in the study reported today. The database includes information on autism from families throughout the United States. "This demonstrates the power of the families, that they are a valuable source of information and that's really the building block," Law said.

Autism Surging but Why? The Jury is Still Out

Lost in the hoopla over the Wakefield hearing in the UK and the "Vaccine trials" in the US are the increases in reported cases of autism in various parts of the world. The US reports have increased to 1 in 150 and the UK reports, by no less an authority than Simon Baron-Cohen himself, a 1 in 100 incidence of autism. Obviously some of those numbers are attributable to the changes in the DSM and in better awareness, diagnosis and reporting. But while everyone is aware of those factors no serious study or report actually attributes the entire increases in the incidence in autism to these factors alone, Baron-Cohen's opinion, and that of Neurodiversity bloggers notwithstanding.

The graph from the California Department of Developmental Services shows that reported incidence of autism increased by five times in the ten year period from 94 to 04. Undoubtedly the DSM change would be a substantial factor in that startling increase along with better awareness, diagnosis and reporting. But do environmental factors contribute to the increasing incidence of autism and if so to what extent? This is a serious question which is not answered by self assured opinions from Baron-Cohen. The medical tribunal will soon report its verdict on Mr. Wakefield and the US "Vaccine Court" may offer some insight on vaccines and thimerosal but as to environmental factors generally the jury may well be out for some time to come.

Autism and Education - the New Brunswick Model

Autism presents issues across the lifespan of an autistic person and those who care for, or about, that person. Early intervention has been demonstrated to be critically important in helping the development of an autistic child. But development and education do not end at age 5 or 6 or whenever the child enters the school system.

















In schools across North America from Ontario, where the government, after dragging its feet has now decreed that all districts will have ABA trained people by next fall, whatever that promise means, to Virginia to California, educators are struggling to come to grips with the increasing numbers of students with autism disorders.







http://tinyurl.com/38f3xt





http://www.smdailyjournal.com/article_preview.php?id=77982

Many autistic children require a dedicated aide to work with him or her, whether it is in a mainstream classroom, or whether it is in a quieter location more suitable for many environmentally sensitive autistic children. If the autistic child's experience is going to be a real learning experience and not just an exercise in frustration for all involved it is absolutely necessary that the aide receive proper autism intervention training to allow the aide to properly assist the child to learn. The program should be written by a resource teacher or mentor with the necessary training in evidence based interventions for autism. The mentor should also monitor the delivery of the intervention assistance by the aide.

That is essentially the model that is being developed in New Brunswick Canada albeit not without resistance from some vested interests. Here the University of New Brunswick College of Extended Learning has developed an Autism Training Program, a program of quality and integrity, which has trained preschool autism support workers for several years. Some of those ASW's have drifted into the school system to fill an overwhelming demand for their services to work with autistic school children. One year of teachers' aides and resource teachers have completed training and another year is scheduled to commence in October 2007. After that, New Brunswick Premier Shawn Graham has promised to train another three classes of aides and resource teachers in succession.

The UNB-CEL Autism Intervention Training program was developed from the outset with input from the Autism Society of New Brunswick and its parent members. That is an important element in the trust that parents place in the UNB-CEL program and in the quality and integrity that the training assures. The instructors are knowledgeable educators. The standards for admission and graduation must be met; criteria which have caused some dissent by senior Education Department decision makers and by union representatives who prefer automatic entry and no testing requirements for all current Teachers Aides. But the UNB-CEL has maintained its commitment to the quality and integrity of its Autism Intervention Training program and New Brunswick's autistic students will be the beneficiaries of hat commitment.

As jurisdictions across North America scramble to find an education model that can be delivered to all autistic students and not just to the children of wealthier families the New Brunswick model is one worth considering and the UNB-CEL commitment to quality and integrity is worth emulating. Hopefully the forces of resistance and regression, the vested interests who fear displacement or loss of personal opportunity will not derail the New Brunswick model at home where it began.

Autism Party of Canada/Parti d'Autisme du Canada

Governments across Canada borrow information, tactics and strategies from each other for a variety of purposes, sometimes a constructive exchange of information to help provide better services to citizens. Other times, and it has happened with autism, they exchange ideas to help them to deflect or defeat the citizens calls for services. A few years ago many jurisdictions, including New Brunswick, shifted primary responsibility for provision of autism services from their Health Departments to their Family Services department. This was, in part at least, an element in governmental attempts, for purposes of then ongoing or anticipated legislation, to re-characterize autism intervention services from a medically necessary, universally available, health service to a means test oriented family service.

To help deal with governments who have been reluctant to provide autism services in all jurisdictions and of all political stripes in Canada I have started a grassroots discussion forum on Facebook called the Autism Party of Canada/Parti d'Autisme du Canada. Hopefully the forum will provide members with information and ideas to use in public discussion with the media and political parties before, after and DURING election campaigns. Charitable autism organizations can not generally stand up to government. They are hobbled by charitable tax status requirements and government grant generated conflicts of interest. An Autism Party of Canada could work with those organizations but go beyond their limitations in dealing with government and provide a firmer response to those in power who make decisions affecting the lives of autistic people in Canada.

If you are interested the facebook url is:

http://www.facebook.com/group.php?gid=3374745172

Autism Society New Brunswick Accomplishments and Challenges That Lie Ahead

In the course of our lives we may join many organizations from Cubs and Minor League Hockey to Home and School Associations to professional organizations and a variety of charities and groups with good public purposes. I am proud to be, and to have been, a part of an organization which exists and dedicates the time, concern and efforts of its members entirely to the cause for which it exists with no distractions such as salaries or fancy buildings or offices in which to lodge and no conflicts of interest such as government funding of its activities. One example of these efforts are the autism and autism intervention books which ASNB has purchased and donated to the New Brunswick Public Library System and to community autism centres across New Brunswick. The Autism Society New Brunswick has operated out of the home or office of whomever serves as President. It does not pay salaries or honorariums to its directors or any executive personnel. All resources of the ASNB go entirely into materials of direct benefit to the autistic people of New Brunswick that we are pledged to help.

The membership of ASNB is varied including parents, professionals and paraprofessionals but it has always been, with two very notable exceptions, a parent driven organization. The two notable exceptions are Jason Oldford, a person with Aspergers who served as a Board official with ASNB for several years and who provided excellent organizational skills, knowledge in a number of important areas, support for parents and his insights into autism as experienced by him. I first learned of Jason although we did not talk at an autism meeting held in Fredericton on March 17 2001. When Jason introduced himself and spoke eloquently to the entire crowd of parents gathered tears flowed.

The other exception to the parent driven character of ASNB is Paul McDonnell, Professor Emeritus, (Psychology) and a clinical psychologist with a focus on autism. Paul, to my knowledge, is not a formal member of ASNB, he is simply the source of most of the ideas on which we have acted over the years. Paul has worked directly with many autistic children and assisted many agencies seeking to address autism issues in New Brunswick. He helped keep the focus on ASNB on evidence based autism interventions and came up with practical ideas on how to address the autism crisis in New Brunswick. If ASNB has had a good idea from time to time it probably originated with Paul who has educated parents, professionals and public servants in this province with his informed expert lectures on autism and autism interventions.

Apart from these two outstanding exceptions ASNB has been driven largely by parents who have given thousands of hours of their time, their parent derived expertise and concern and their commitment to make changes for the better in New Brunswick. Because of ASNB lobbying efforts New Brunswick, despite its poor cousin status amongst Canadian provinces, has one of the better pre-school autism funding programs in Canada. That does not mean that the monetary limits which restrict hours of intervention and other problems do not exist, simply that the program is good compared to some of our other provinces and for that we can thank the intense lobbying efforts of the ASNB and its parent members. We can also thank ASNB lobbying for the efforts to ensure that the people providing pre-school autism intervention receive decent training which most do through the UNB-CEL Autism Intervention Training program. Again, problems exist, some autism agencies in New Brunswick still utilize untrained personnel and that is simply not acceptable. But the current state is much better than what existed eight years ago and we will continue to work on addressing these issues through ASNB.

A key accomplishment of UNB has been that of obtaining the reversal of the decision to terminate pediatric tertiary care autism services at the Stan Cassidy Centre in Fredericton. Such services address the needs of some of the most challenging and complex issues confronting autistic children. The decision to reverse was prodded by a lobbying effort led by the Autism Society New Brunswick.

In Education the ASNB has achieved some success in encouraging the education department to depart from its rigid adherence to a philosophy that all children must be educated in the mainstream classroom. The ASNB position is that education of autistic children requires an evidence based approach, look at what is best for the child or student in question. Allow that student to learn in the way he learns best where he learns best whether in the classroom or in a quieter location. That evidence based, common sense position however, does not always prevail. There is a powerful lobby in New Brunswick led by the well connected executive director of a community living organization which opposes any attempt by the Department of Education to depart from a philosophy of total mainstream inclusion for every student. The lobby also includes the current Chair of the New Brunswick Human Rights Commission and the learned professor who conducted, within the terms of a restricted mandate, the flawed review of New Brunswick's inclusive education system. ASNB will continue its efforts to ensure that students with autism will be educated in an environment appropriate for that student whether it be the mainstream classroom or a quieter environment within the school.

ASNB has also enjoyed some success in encouraging government to provide quality autism intervention training to the teachers aides who work with autistic students. Approximately 100 have been trained over the years and another 100 are scheduled to be trained commencing in October. A further 300 are expected to be trained over the following three years pursuant to an express commitment by Premier Shawn Graham.

The greatest challenge, however, lays ahead. New Brunswick has an abysmal, almost non-existent system of youth and adult treatment and residential care for autistic persons. The primary component of this system are group homes, run by private, profit driven organizations which staff their homes with untrained personnel and have been known to skimp on basic dietary requirements, feeding autistic residents low nutrition, high carbohydrate diets. There is no oversight to speak of for these group homes. If a confrontation arises between an autistic resident and an untrained staff member there is no one to corroborate the autistic resident's story and no one who can determine whether a situation might have been provoked by a staff person ignorant of autism. Beyond the group homes there is Centracare a mental health hospital in Saint John and beyond that New Brunswick sends its most difficult challenged autistic youths and adults to facilities in other Canadian Provinces and the United States. We export our autistic people. ASNB is not giving up on this area. ASNB has in the past exposed the fact that an autistic youth was sent to reside on the grounds of a youth correctional facility, pending export to a facility in the US, not for having committed an offence but because there was no other place for him to live in New Brunswick.

These are the past successes and present and future challenges facing the Autism Society New Brunswick. ASNB is a democratic organization with open membership rules and no conflicts of interest involving a government from which it does not receive, or seek funding, and which seeks input from all persons interested in autism. I am proud to be associated with ASNB and I hope all New Brunswickers with an interest in autism will become involved to deal with the huge challenges that lie ahead.

Autism Surging in Massachusetts - Part 2

With the focus right now on the allegations of very serious misconduct that have been levelled against "MMR" Dr. Andrew Wakefield many people are missing important information suggesting that autism is indeed, for whatever reasons, surging. Simon Baron-Cohen cites as authoritative a 1 in 100 incidence rate of autism in the UK; substantially greater than the 1 in 150 US figure cited by the CDC. Meanwhile in Massachusetts "Heidi P. Guarino, spokeswoman for the state Department of Education, said the rate in Massachusetts is closer to 1 in 130 children, based on data provided by public school districts. The number of school-age children with autism in Massachusetts jumped 84 percent from 4,080 in 2002 to 7,521 this past school year. In Central Massachusetts the number nearly doubled from 692 to 1,349 in the same period. Before the 2002-03 school year, the DOE did not track the disorder separately, Mrs. Guarino said. "

Part of the increase may be due to more appropriate diagnosis as suggested in the Worcester Telegram article "Autism rate soaring", July 19 2007. For now as the Telegram article reports research has not found a cure but "experts say the earlier the intervention the better. Highly structured behavioral training and educational programs help autistic children develop social and language skills."

http://www.telegram.com/article/20070719/NEWS/707190761/1008/RSS01&source=rss

Autism Is Not the Essence of Conor

Conor is my son. He is a great and wonderful joy in my life. Each and every day he brings a smile to my face. Conor is also autistic, his diagnosis is Autism Disorder, assessed with profound developmental delays. His autism is severe. For those who would ban the use of terms such as severe vs mild or high functioning vs low functioning to describe autism I have listened to you and I can only say that it is silly to deny that there are profound differences, real life differences, with serious implications for the future well being of those, such as my son who are low functioning , and the high functioning autistic persons who write essays, host blog sites, give testimony before political bodies and intervene in appellate court proceedings. To suggest otherwise is to enter the realm of absurdity. But Conor is notjust his autism. He is a person with an affectionate and fun personality. Conor's limitations arise from his autism deficits but his personality, the essence of who he is, does not arise from his autism.


I make every effort I can to improve Conor's life today and for the future. That is why he receives the ABA intervention that has proven so helpful in permitting him to communicate, understand more speech, read, write and do some simple math. He receives ABA because his parents love him dearly and, as with any other child, we want to give him the greatest chance we can to live a full and happy life for as long as he can.

There are voices, strident voices at times, who condemn parents for seeking to treat or cure our own children of their autism. Such voices, again, inhabit the realm of absurdity. It is absurd to suggest that a child should not be cured of life restricting conditions which seriously impair their ability to function and which, in many cases, condemn the child to a life of institutional care. It is absurd to condemn the parents who love their children enough to seek to cure or treat their children, to provide them with a better life. As a parent who would welcome a cure for my son's autism I am secure in the belief after 11 years of raising, caring for and living with Conor, that the real essence of Conor, his fun, laughing, affectionate personality, would remain after treatment. I have faith in my knowledge of who my son is, based on our years together. Curing my son of autism would do just that, it would remove the deficits which restrict and impair his ability to live a fuller life. It would not remove the real essence of Conor, an essence which is more than his autism and which I hope is evident in the pictures which accompany this comment.

McGuinty's $2.4 Million Broken Autism Promise

[Image from Chris Peters Web Marketer site]

"success is largely about keeping your promises."

[Seth Godin's BLOG]

Forced by the courts to fess up the government of Ontario Premier Dalton McGuinty has admitted that it spent $2.4 million in court costs fighting parents who were seeking the help for their autistic children that Mr. McGuinty promised on the campaign trail. Unfortunately Mr. McGuinty's actions were not unprecedented. In British Columbia Liberal leader Gordon Campbell condemned the decision by the NDP government of the day to appeal the Auton decision. Then, within 90 days of forming the government, the Campbell Liberals announced that its government would press on with the appeal in order to avoid setting a bad legal precedent. Apparently neither Mr. McGuinty, nor Mr. Campbell, considered the moral precedents they were setting by breaking their promises to the parents of autistic children. Is it any wonder that Autism parents have decided to GET POLITICAL and target swing ridings in the impending federal election? The Supreme Court of Canada has removed the Canadian Constitution as a meaningful protection for autistic children. And the Liberal Premiers of two of Canada's most populous and prosperous provinces have shown that their word can not be trusted. Political activity, hard cold, ruthless if necessary, political activity is all that is left for parents of autistic children seeking access to health, education and residential care services for their children.

NDP outraged over McGuinty's $2.4 million broken promise

    QUEEN'S PARK, July 17 /CNW/ - NDP MPP Shelley Martel is outraged that the
McGuinty government spent $2.4 million on lawyers to fight parents of children
with autism in court, instead of providing IBI treatment that Dalton McGuinty
promised them.
  "It's scandalous that Dalton McGuinty squandered $2.4 million of public
money on lawyers in a cynical attempt to break an election promise made to
children with autism. That money could have funded IBI treatment for
50 children for a year," said Martel.
  Martel said Dalton McGuinty should never have dragged parents and their
vulnerable children through the courts, at great expense to the public and the
families, just so he could break a promise.
  "It's appalling that Dalton McGuinty's priority was to waste millions of
dollars of public money fighting parents in court, instead of providing
children with autism with the treatment they needed," said Martel.

http://www.newswire.ca/en/releases/archive/July2007/17/c7369.html

Autism Newsflash - Neurodiversity and Autism Deficits

I recently posted a list of "Neurodiversity's 10 Autism Commandments| . While referring to themselves as autistic persons, or their children or clients as autistic, based on autism disorders, from the DSM-IV, Neurodiversity (ND) advocates don't actually consider autism a disorder and object to others speaking of it as such. Hence the first of ND's 10 Autism Commandments. After reading a comment on the blog site of Neurodiversity Hub blogger Steve D of "One Dad's Opinion" I was startled to read his interpretation of a recent autism conference hosted by USD Autism Institute in which, according to Steve D, the message of the conference's "Prime Movers" was:

"we need to move away from the "deficit model" of autism. The DSM-IV-r defines autism specifically by what autistic people cannot do compared to NT's (by the end of the conference, I must state here, EVERYONE was using the term NT - ever since Amanda's video was shown. Amanda - it really does work - you know, Getting the Truth Out :) ). This, in their view, improperly biases observers to look for "voids" of good behavior or existence of "bad" behavior - without ever considering the root cause of any given behavior at all. It leads to the (classic behaviorist) conclusion that "If I can just isolate this one behavior and eliminate it, my subject will become less autistic."

(highlighting added for emphasis - HLD)

Well, here is a news flash for Steve D and the "Prime Movers" of the conference. Parents seek medical attention for their children when they exhibit "deficits". That is why autism diagnoses are made. Because children show "deficits" such as lack of speech and other communication, lack of social interaction, even with parents, repetitive self absorbed behavior, self injurious, even life threatening behavior, and aggression towards siblings, parents, teachers and school mates. My son Conor has many strengths. He is a great and tremendous joy in my life. But I do not and can not ignore the reality of his "deficits". It does me no good, when Conor grabs my arm or head as I drove the family car, or puts his hand through a window, again, to think of Conor's many strengths and pluses. It is his deficits, his autism deficits, with which I have to deal. It is those deficits which resulted in Conor receiving professional attention and an Autism Disorder diagnosis.

Steve D mentions "epiphanies" in his commentary. Personally I hope that some day Steve D and the Neurodiversity movement have a different sort of epiphany and stumble onto a "concept" they have long abandoned and forgotten - reality.

http://onedadsopinion.blogspot.com/2007_07_01_archive.html
http://www.sandiego.edu/autisminstitute/conferences/summerconference.php

University of San Diego
School of Leadership and Education Sciences
Autism Institute

Presents the

Summer Autism Conference

People Not Packages: Dynamic Approaches to Personalizing Supports for People with Autism

July 9 – 11, 2007

Autism Reality - Australian Dad Pleads For Help For Institutionalized Adult Son

An Australian Dad is pleading for help for his autistic teen aged son who has been residing in a psychiatric care facility for the past two weeks after suffering an outbreak of aggression and hallucination. The problem is a lack of facilities with trained personnel in the Australian city of Victoria who can deal with his son's deficits. His son is in a seclusion room in the facility with no routine, no structure - essentially incarcerated. Chris's story in Australia differs little from similar stories in New Brunswick, Canada.

Swanston Centre Geelong Hospital

Here we have a smattering of group home facilities run by private operators and a psychiatric hospital (Centracare). I have been to Centracare in Saint John, New Brunswick and saw an adult autistic male in barely sufficient hospital garb in a seclusion room with a wet floor, just as his father had described seeing him on a previous visit as we drove to the facility.

The conditions there are much as described by this Australian Dad and just as heart wrenching. After Centracare our Province of New Brunswick has sent autistic youths to reside on the grounds of a youth correctional facility and exported autistic youths and adults to residential treatment facilities outside the province and even outside the country in neighboring Maine, USA.

For some autistic youths and adults, particularly those with actual Autism Disorder, such institutional life is their future.

Dad's plea for help with autistic son

Michaela Farrington

18Jul07

TEARS filled Wally Hannam's eyes yesterday as he described watching his autistic teenage son ``pacing like a caged animal'' in Geelong's Swanston Centre.

The Belmont father said his 16-year-old son Chris had been in the psychiatric care centre for two weeks, after he began hallucinating and became agitated. But he said his much-loved teenage child did not belong in a facility designed to provide acute psychiatric care for adults.

``It's so inappropriate for Chris to be there,'' Mr Hannam said yesterday, ``But he's stuck there.

``He's been there now for 13 nights.''

Mr Hannam is campaigning to have Chris moved to a facility for young people, where medical staff were used to caring for people with autism.

He was horrified to learn there wasn't a bed available anywhere in Victoria in a facility that could provide for Chris' needs _ his autism and his mental illness.

``The seclusion room where he is at now is driving him out of his skull, because he's locked up,'' he said, ``He doesn't understand.

``With autism, you need structure, you need routine, you need quiet.

``But yesterday, there were patients in there hitting the walls, banging to doors, screaming.

``It's an appalling situation.''

He said Swanston Centre staff had tried hard to make Chris comfortable, but they were just not equipped to help him.

Mr Hannam has devoted his life to caring for Chris, who also has an intellectual disability.

Until recently, the 16-year-old was happy at home with his pet chooks, climbing trees, riding his bike, going bird watching with his dad and chatting to the neighbour over the fence.

But he began hallucinating in recent months and became unsettled.

Mr Hannam sought medical help for his son, who had lost interest in everything.

``It's really taken hold of him. It's like it has robbed him of his personality,'' Mr Hannam said.

``It's heartbreaking.''

But while doctors searched for the right treatment, Chris grew more aggressive, lashing out, until Mr Hannam could no longer cope.

He agreed to admit his son to the Swanston Centre for a day or two until a bed in a more appropriate facility became available.

Two weeks on and the family is still waiting.

Barwon Health's clinical director of community and mental health Dr Tom Callaly yesterday agreed the centre was not the best long-term solution for Chris.

He said Barwon Health was seeking more appropriate care options.

But an exhausted Mr Hannam has begun to despair.

``I just want to pull the kid out of there now, but I realise that would just make things worse.''

http://www.geelongadvertiser.com.au/article/2007/07/18/5496_news.html

Autism Truth - 1 in 100 - An Alarming Autism Number

The leaked draft report which stirred up so much controversy recently was responded to with vigor by Simon Baron-Cohen. The learned professor was one of three researchers involved with preparation of the report. He quickly trashed the 1 in 58 figure as only one of three figures mentioned in the report and made comments suggesting that the 1 in 58 figure, part of his own report, might not be that reliable. Instead Professor Baron-Cohen points to a figure of 1 in 100 as being reliable:

"In the meantime, he [Baron-Cohen] says that the best, most carefully conducted studies all show around 1 per cent of children lie on the autism spectrum (see box) and there is no reason to suspect that this has suddenly changed. There has been a gradual rise over decades, he says, but this reflects the fact that children are more routinely assessed, greater public awareness, and a wider diagnostic net.

The National Autistic Society also quotes a figure of 1 per cent for the incidence of autistic spectrum disorders. Benet Middleton, the NAS’s director of communications, says that, having spoken to Baron-Cohen, the charity had no plans to revise its figures. Middleton says: “This is an unpublished study that has not been peer-reviewed, and there are lots of reasons why studies don’t get published. The research that’s been published and peer-reviewed suggests a rate of 1 per cent.

http://www.timesonline.co.uk/tol/life_and_style/health/article2060575.ece

1 in 100? The accepted UK figure of 1 in 100 is substantially greater than the 1 in 150 figure cited by the CDC in the US which until fairly recently cited an autism incidence figure of 1 in 166. Why such a huge gap between the UK and US figures? And why are education authorities in Massachusetts reporting a near doubling of autism cases in the past few years? Professor Baron-Cohen's explanation of of diagnostic criteria changes implemented in the 1994 DSM revision, with greater awareness, would seem plausible to explain some of the increase.

I am the father of an 11 year old boy with classic Autism Disorder with serious deficits. Unlike the good professor I find his assertion that 1 % of the population of the UK very alarming. I find a doubling of autism cases in the State of Massachusetts education system in the last few years alarming. I am not an autism authority but I am thankful that research is continuing into potential genetic and environmental factors in the rise in autism rates.

The world does not need another irresponsible Wakefield "vaccines cause autism" scare. But the world can also do without blithe Baron-Cohen assurances that the rise in autism numbers is solely attributable to changes in diagnostic criteria and greater awareness.

1 % of a national population is autistic? This humble "autism dad" finds that number very alarming Professor.

Ontario Superior Court Rejects Government Bid to Conceal Autism Lawsuit Costs

In a decision which could have embarrassing political costs for the government of Autism Promise Breaker Dalton McGuinty a three justice panel of the Ontario Superior Court has rejected the government's bid to keep secret the legal costs it incurred in fighting a lawsuit brought by parents seeking therapy for their autistic children. The parents were seeking in the courts what they felt had been promised them by Premier McGuinty while he was campaigning. It is interesting to note in the following Canadian Press report of the decision that government lawyers advanced arguments before the court which they had not made before the Privacy Commisioner whose decision was the subject of the judicial review proceedings. As the matter proceeded through the legal process the McGuinty government became ever more determined - or desperate - to continue concealing the costs to taxpayers of his decision to fight the parents who were seeking help for their autistic children - children Mr. McGuinty had promised to help.

Court rejects bid to conceal autism lawsuit costs

Canadian Press

TORONTO — The Superior Court of Justice has rejected a government request to conceal how much it spent fighting a lawsuit filed by parents of autistic children.

New Democrat Shelley Martel filed a request under the province's Freedom of Information law to find out the cost of the province's legal bills in fighting a lawsuit that sought intensive autism therapy for children over the age of six.

Information and Privacy Commissioner Ann Cavoukian ruled earlier this year that the government should release the total by March 8, but the attorney general's ministry sought a judicial review of that decision.

On Monday, a panel of three judges rejected the government's application and said Crown lawyers tried to build some of its case based on arguments that were not presented to Cavoukian's office, and therefore weren't valid in court.

The lawyers had argued the government's legal bills were covered by solicitor-client privilege and shouldn't be disclosed. They told the court that disclosing the fees would set a precedent that would apply to all lawyers and their clients across the province.

Martel had argued the costs were a matter of public interest. She said the government could have better spent that money on treatment for children, rather than fighting families in court.

The judges also rejected another government application for a judicial review into a case involving funding for a test for a rare form of eye cancer.

Cavoukian's office had ordered that the Ministry of Health and Long-Term Care disclose how much it spent on a series of appeals involving reimbursement for the cost of the testing.

Auton's Other Shoe Falls in Ontario - Autism Parents Get Political

In the Auton decision the Supreme Court of Canada denied the protection of the equality provisions of the Canadian Charter of Rights to autistic children in need of Applied Behavior Analysis treatment for their autistic condition. That decision was part of a long trend of cases by which the Supreme Court articulated a judicial policy of deference to government decision making on issues involving the public purse.

With the courts and legal process effectively denied by the Auton decision, a decision confirmed in its effect, if not in legal theory, by the Deskin-Wyneberg case out of Ontario, parents of autistic children seeking access to services for their children are getting political in a big way. The following story describes the intention of autism parents in Ontario - they are going to politically dog the steps of the Promise Breaker - Dalton McGuinty.

Parents will dog McGuinty campaign

Sun, July 15, 2007

The ABCs of Ontario Election 2007. The first in an ongoing series examining the issues in the countdown to the Oct. 10 vote, beginning with autism.

By ANTONELLA ARTUSO, SUN MEDIA QUEEN'S PARK BUREAU CHIEF

TORONTO -- Premier Bob Rae's re-election bid was dogged by social-contract-hating protesters.

Giant flip-flops followed Liberal Lyn McLeod around during the 1995 campaign to spotlight same-sex rights.

Mike Harris was swarmed by Kraft Dinner-throwing poverty protesters in 1999.

Now, Premier Dalton McGuinty can expect to find his election steps haunted by a group of parents who intend to make autism front and centre in the coming provincial campaign, which gets officially underway on Sept. 10.

Richmond Hill's Taline Sagharian, the mother of a 10-year-old son, told Sun Media last week this new group is determined to play a "very strong" advocacy role in the election, bringing the issue directly to the politicians on the hustings.

"It's a small group of families right now, but it's snowballing," she said. "It's going to be a new and different thing."

The group is in its infancy -- members are still choosing a name -- and it's debating a number of possible actions.

In particular, they're focusing on issues around Intensive Behavioural Intervention therapy (IBI): The long waiting list for government support, the gap between what the government pays and what the service actually costs, and the lack of IBI in public schools.

With these supports, children with autism can lead more rewarding and productive lives, Sagharian said.

Without access to this expensive but effective form of therapy, children with autism may face a bleaker future in even more costly group homes.

---

WHAT THE LEADERS SAY

- Dalton McGuinty (Liberal): "I'd ask Ontarians to take a look at what we inherited and what we've done so far. There were no services available for children once they reached the age of six; they were cut off. That was a Tory policy. We've changed that. Furthermore, there were no services available in our schools. We've changed that as well. We've more than doubled the funding available for our children who are affected by autism." (Sept. 25, 2006)

- John Tory (PC): "We're going to do what we say we will do. Clear the waiting lists, respect parents, and give vulnerable children the support they need -- these steps will be job No. 1. People will be able to rely on my word." (Feb. 23, 2007)

- Howard Hampton (NDP): "Children with autism and their families need action, not buck-passing. They need someone to stand up for them and their kids. I am calling on Dalton McGuinty to do the right thing and extend IBI treatment to every child who needs it without delay. It's only fair." (June 27, 2007)