Trail Walking with Conor

Today was another perfect day in Fredericton.


This afternoon Conor did some Nashwaaksis trail walking with Dad.

Dr. Wendy Edwards, Pediatrician and Autism Mother, Advocates Treating Autism as a Whole Body Medical Illness

The Times Colonist has an article on yesterday's Autism Canada conference and its focus on treating autism as a whole body medical illness. Speakers included Dr. Derrick MacFabe of the UWO team which recently released its findings on proprionic acid and Dr. Martha Herbert of the Harvard Medical School. Much of the article though focused on Dr. Wendy Edwards, a Southern Ontario pediatrician whose son was diagnosed with autism at age 3. The message at the conference as summarized by the Times Colonist is that autism is a full body illness and is not limited to the brain.

Dr. Edwards advocates the use of biomedical treatments in addition to applied behaviour analysis in treating autism. She recommends diets aimed at eliminating toxins and reducing digestive tract inflammation and describes some elements of such diets including melatonin, antioxidants and the GF-CF free diet. Dr. Edwards acknowledges that her biomedical recommendations are not supported by scientific study but questions whether parents should wait while the studies are done:

"Why not do what we feel is working while we wait for the study to prove or disprove it? If we're not out there doing all these things and telling the researchers 'What about this?' the research won't get done."

There are good arguments against the use of experimental treatments for autism or any other medical condition. Financial resources are not unlimited, special diets can often add expense to a family budget already stretched tight particularly if the family is already strapped by the expense of paying for ABA, which although not curing autism, is an evidence based effective health and education intervention. Experimental treatments can also waste time and morale both of which are valuable to a family trying to help their child. Further, some seemingly innocuous interventions might in fact have unforeseen and possibly harmful effects on a child.

Still, if a family can afford the interventions, consults with physicians and does not get their hopes too high, it is difficult to see why they shouldn't try interventions backed by anecdotal evidence of other parents some of whom like Dr. Edwards are also pediatricians themselves. Especially if they do not forgo evidence based interventions in order to try experimental approaches. The UWO Proprionic Acid study grew out of parental observations. Although all parents are not also medical professionals like Dr. Edwards, they are the front line observers of their children's condition.

Yes, Autism Should Be Cured

Autism should be cured.

Most parents of severely autistic children will answer that question as I have just done. There are some high functioning autistic persons who argue that autism should not be cured. There are some parents of high functioning autistic persons and professionals who work with them who argue that autism should not be cured. Some simply ask whether we should seek to cure autism. The answer to any such question is yes, yes, yes, we should.

We should seek to cure autism so that severely autistic people can be cured and their lives enhanced. That is really all there is to it. This is not to suggest that the higher functioning autistic people who push their views on the internet should be forced to be cured. Absolutely not. But for severely autistic children, whose parents, legally, morally and practically speak for them, the answer is yes they should be given the chance to be cured. What other medical condition do we not seek to cure, or at least to give people the choice of being cured if they are capable of making the choice; or of having their care givers or guardians make the choice if they are not capable?

My son Conor is 11 1/2 and did not have access to 40 hours of ABA between the ages of 2 and 5. He has received ABA as much as possible though particularly since trained UNB-CEL Autism Training Intervention Program began graduating Autism Support Workers; some of whom now work in the school system. With ABA we are able to communicate at a basic level with Conor and he has learned some reading, writing and math skills. (He loves Dr. Seuss and Pinky Dinky Doo) We have also been able to moderate his self aggressive behaviour using ABA and knowledge of what environmental factors are likely to prompt frustration and self aggression.

Would we accept a cure for Conor if one were available and did not involve serious risk to his safety? Yes, if I could cure Conor's autism with the wave of my hand I would stop typing this commentary and do it now before finishing this sentence. I know that Conor is more than his autism; that his personality, his identity, are not dictated by his autism, that Conor would still be Conor. With one major difference. His opportunities to experience and enjoy life would be enhanced immeasurably.

The high functioning autistic persons who oppose curing autism have every right to decide not to be cured of their autism - for themselves. They have absolutely no right to do so for my son and other severely autistic children. They can argue until the sun ceases to shine but they will never convince me, nor most parents of severely autisic children, that we should not cure our children of their autism, that we should not enhance our childrens' lives as parents have strived to do since the beginning of human existence.

Yes, autism should be cured. And the Autism Knowledge Revolution which jumps almost daily onto our internet pages holds out great promise of doing exactly that.

A Perfect Day

Today was a perfect day in Fredericton. A clear blue sky, a beautiful sunny day with a comfortable fall breeze.

Conor enjoyed the cool breeze ... and the McDonald's Hash Browns.





























A visitor also enjoying the breeze ... and showing us some flying techniques.














The view from the picnic bench.

FEAT-BC - Fund-raiser at CAPONES & Bill Good Show

FEAT-BC continues its relentless campaign to ensure that all Canadians with autism receive full Medicare coverage for the costs associated with the treatment of their often devastating medical condition.

Today, Saturday, September 29th, FEAT-BC welcomes a full house of parents and supporters to a fund-raiser at CAPONES, in Yaletown. The evening promises lots of fun, a silent auction featuring a truly incredible array of donated items [ie. a three day stay in a deluxe Whistler condo; a Vancouver Canucks' jersey, signed by the entire team; a case of Burrowing Owl merlot; etc.], and the opportunity to play an important part in the early stages of what is going to be a successful campaign! We're told that CBC-TV's "National" news team intends to cover the event, as part of their plan for a possible mini-documentary on "autism activism".

On Tuesday, October 2nd, for one half-hour beginning at 11:30am, FEAT-BC founding director Jean Lewis and moi will be guests on CKNW's Bill Good Show. We'll be discussing the launch of the "FEAT-BC goes coastal" campaign. If you are able, tune in AM980 and listen to the programme. Call in, if you're moved to do so.

North America is experiencing an autism epidemic of staggering proportions and, unlike the situation with our neighbours to the south, Canada's national government is doing absolutely nothing to address it. This is both morally reprehensible and economically stupid.

The upcoming federal election offers the best chance to put right this wrong. FEAT-BC intends to lead the campaign, from the Pacific to the Atlantic, in search of justice for some of Canada's most vulnerable citizens. You can help in many ways: donate some money [always the easiest thing to do]; volunteer some time to serve as a "FEAT soldier" in your community; e-mail, telephone or otherwise contact your family, neighbours, work associates and others in your circle of acquaintance, encouraging them to vote for a candidate who will support Medicare coverage for the treatment of autism; write letters to newspaper editors and MPs demanding urgent action; or any combination of this list.

David O. Marley

Tel. 604-970-1258 / Fax 604-926-8994

"A nation of sheep begets a government of wolves."
- Edward R. Murrow

Autism Symposiums In The US (Open, Democratic) vs Canada (Closed, Undemocratic)

In the United States there are currently several autism symposiums scheduled or underway.

It is interesting to note that public participation is encouraged at these American events. In some cases American law requires public input. They do not appear to dictate who can and can not attend. Nor do they attempt to pass off government selected delegates as representatives of community organizations as is currently occurring in Canada with the CIHR Autism Symposium. Here in Canada, the CIHR has bypassed community organizations like the Autism Society New Brunswick and decided for itself who will represent community organizations at this event.

A little tip for the esteemed scientists at the CIHR from a humble small town lawyer, father of a profoundly autistic boy and long time autism advocate. In democratic societies organizations select their own representatives. Government bureaucrats, even those with Ph. D.'s, their Public Relations advisers, and their Political superiors, do not decide who represents community and other organizations. And they do not try to control the discussion that takes place at the symposium by professional "facilitators".







County to hold symposium on autism on Oct. 20

Goshen — The Orange County Department of Mental Health’s Developmental Disabilities Division is working in partnership with the Orange-Ulster Board of Cooperative Educational Services (BOCES) to sponsor a major education and awareness event on Oct. 20 titled “Autism in Orange County - A Symposium and Exposition for Our Community.” This announcement was made by Orange County Executive Edward A. Diana and Commissioner of Mental Health Chris Ashman. .... Diana encourages all persons with an interest in autism to plan to attend the October conference ...







From the bulletin board section of the Pittsburgh Post-Gazette.

Chippewa-- A free autism symposium will begin at 6:30 tonight at Blackhawk High School, 500 Blackhawk Road. Speakers include those in government and education. There will be displays about related community resources. The event is sponsored by state Rep. Jim Marshal (R-Big Beaver).





A symposium that will focus on enhancing the lives of people with disabilities will be held Oct. 25 in Sioux Falls.

The GreenSTAR Symposium will offer a community forum to discuss educational opportunities and to exchange ideas, organizers said.

It will be held at the Sioux Falls Convention Center and is open to people with disabilities, their families, professionals who serve people with disabilities, and businesses and organizations who employ people with disabilities. The public also is invited.

Dick Hoyt is the keynote speaker. He and his son, Rick, who was born with multiple disabilities, are nationally known for running marathons and triathlons together.

Workshop sessions will focus on autism, fetal alcohol syndrome, guardianship, special needs trusts, and rehabilitation, among others.

Forum to gather public input on Autism

ManchesterJournal.com

Article Launched: 09/28/2007 09:22:58 AM EDT

Friday, September 28

RUTLAND - The Vermont Agency of Human Services and the Department of Education will host a public forum on Autism Spectrum Disorders to gather public input for developing a plan to provide services to individuals with autism spectrum disorders in their homes, schools and communities.

Interested parties are invited to attend a meeting scheduled on Oct. 3, from 10 a.m. to 12 p.m. at the Asa Bloomer State Office Building, Room 266, 88 Merchants Row, in Rutland. The building is wheelchair accessible, but if other accommodations are needed, call 802-241-4534.

Public input is a requisite of Act 35, an Act relating to Autism Spectrum Disorders, passed by the 2007 Vermont Legislature. If unable to attend written input may be sent to: Autism Specialist, DAIL, 103 South Main Street, Waterbury, VT 05676.

Autism Symposium Invitation Nov 8 -9 In Toronto

Following this comment is the official invitation that was sent out to the government hand picked invitees to the Autism Symposium scheduled for Nov 8-9. As previously mentioned, the government has decided who will attend as representatives of community organizations. In New Brunswick invitations were sent by the CIHR to individuals without consulting the provincial Autism Society New Brunswick. So what community organizations will the New Brunswick invitees be representing? Who gave the CIHR the mandate, the authority, to determine who would represent autistic persons in New Brunswick?

If you read the official invitation you will also see that the discussion sessions will be professionally facilitated with the goal of making this a positive and constructive experience for all participants. I have attended "professionally facilitated" events in the past. Professionally facilitated is another way of saying "scripted" or "staged". A positive and constructive experience means that no challenging questions will be asked or difficult issues raised.

The report coming out of this event will be consistent with the present government's views on autism and service delivery in Canada and will not represent the perspectives of autism activists. I do not know who was selected by the federal government to "represent" New Brunswick autism organizations but they will not be there representing my son.

...

Dear ......,

It is with great pleasure that we invite you to attend the Autism Symposium taking place on November 8^th-9^th, 2007, at the Four Points Sheraton Hotel, Toronto Airport, 6257 Airport Road, Mississauga, Ontario L4V 1E4.

The symposium is part of a package of federal initiatives that the Honourable Tony Clement, the federal Minister of Health, announced in November 2006 to improve knowledge and research on autism spectrum disorders (ASD) and to help address the challenges facing individuals with ASD and their families. The Canadian Institutes of Health Research is hosting this event in collaboration with our partners in the federal health portfolio, Health Canada and Public Health Agency of Canada.

The goals of the symposium are as follows:

To inform service providers, policy makers, and those with autism and their families about the scientific evidence base on autism

§ To assist the research community in planning further research.

Above all, the symposium is being organized as an opportunity for knowledge exchange, networking, and community-building. We are extending an invitation to 120 people to attend the symposium, including individuals with ASD and their families, service providers, researchers, representatives of community organizations, and government officials. The agenda includes a reception on the evening of November 8^th, and a full day meeting on November 9^th. The discussion sessions will be professionally facilitated with the goal of making this a positive and constructive experience for all participants.

Researchers with expertise in interventions, genetics, epidemiology, neurobiology and cognition, adolescents and adults with autism, screening and diagnosis will make presentations. In addition, family members, individuals with autism, and service providers will also have opportunities to present their knowledge and perspectives to the group and to discuss the challenges they face.

I would kindly request that you RSVP by October 16^th at the latest. If you are planning on attending, please fill in the attached registration form and send it in by e-mail or by fax. If you are not planning on attending, please let us know so that we can offer your place to someone else. The contact person for the symposium is:

Asimina Saikaley

Project Officer, Institute of Neurosciences, Mental Health and Addiction, CIHR

asaikaley@cihr-irsc.gc.ca, Phone 613-941-0874, Fax: (613) 954-1800

For your convenience, a block of rooms has been reserved at the conference hotel until October 16 at a special rate of $139 and are available on a first come first serve basis. Please contact the hotel directly at: 1-800-565-5769 and ask for the rate under Canadian Institutes of Health Research when making your reservations in order to get the special conference rate.

Please note that your economy fare travel, food and accommodation expenses will be reimbursed following the symposium according to the Government of Canada’s Treasury Board guidelines. A form for that purpose will be included with the information package provided to you at the symposium.

Should you have any questions, please do not hesitate to contact Asimina Saikaley by e-mail or phone.

We look forward to seeing you at the symposium.

Sincerely,

Rémi Quirion, PhD

Scientific Director

CIHR Institute of Neurosciences, Mental Health and Addiction

Barbara Beckett, PhD

Assistant Director

CIHR Institute of Neurosciences, Mental Health and Addiction

Autism: A Medical Condition

An autism conference featuring doctors and researchers organized by Autism Canada and featuring Dr. Martha Herbert, Dr. Derrick MacFabe and Dr. Wendy Edwards will take place this Saturday at the University of Ottawa. As the title indicates the focus will be on autism as a medical condition. Gord McDougall at 580 CFRA has commented that "governments have been reluctant to tie autism to health issues, because that would commit them to spending money from the already stretched health envelope." Mr. McDougall's comment is absolutely right.

8 years ago the lead Minister on autism issues being examined by a government of New Brunswick InterDepartmental Committee on Autism Services was the Health Minister. When funding for autism specific services was first announced it was by the Health Minister. Then the programs and leadership on the autism portfolio were transferred to the Department of Family and Community Services. The Province of New Brunswick, like other governments, did not want to acknowledge that autism interventions, particularly Applied Behaviour Analysis sought by so many parents of autistic children, were health care treatments. Autism interventions were characterized as family services to avoid having them characterized as health care treatments and reduce the possibility that a court might order them to be funded under Canada's medicare scheme. As it turned out they needn't have worried. The Auton decision was such that, medical treatment or not, Provinces would not be obligated to fund them under Medicare.

The conference this weekend will focus on autism as a medical condition, biomedical treatments , " the shift in autism paradigm to a whole-body systems approach" and current research.
The Autism Canada web site sets out the full particulars, invites registration on their web site and identifies their target audience as parents, agencies, school personnel, medical professionals, basic research scientists and others dedicated to improving the quality of life for those with ASD.

Conor Tracks

I have mentioned before that my son Conor, now 11 1/2, with Autism Disorder and profound developmental delays, is a great joy in my life. His autism presents serious challenges and precludes him from having an independent life. Despite the many challenges though, Conor adds much to my life.



When I see him at the end of the work day, face pressed against the window waiting for Dad, or when he walks into a room, I get a "Happy Buzz". I feel better, my spirits are lifted. Sometimes I get a Conor Happy Buzz even when I don't see him.

Last night, after Conor was asleep in his room, and during a commercial break from the season premiere of "My Name Is Earl" I went to the kitchen for a glass of water and spotted something on the kitchen floor. The ABC 's are Conor Tracks, signs that he had been there. And once again I got a Conor Happy Buzz.

$13.8 Billion Surplus But Nothing To Help Autistic Children and Adults

The Stephen Harper Conservative government has announced a $13.8 billion surplus. The Harper Conservatives celebrated the huge surplus at an announcement in Toronto. As pointed out in the Globe & Mail "Celebrating the huge surplus — which grew 50 per cent above forecast — was a change of tune for the Conservatives, who used to savage Liberal governments from the opposition benches for big windfalls. "

Despite the huge surpluses the Harper government does absolutely nothing to help autistic children and adults. Well not quite nothing. They have put up a mediocre autism web site. And of course there is the Autism Symposium exercise in "community building" with government picked community representatives scheduled for early November. You would think with all that money Harper's government could do more to address Canada's autism crisis than a web site with borrowed information and a government scripted autism symposium.

Proprionic Acid - UWO Scientists Find Potential Autism Gut-Brain Connection

Scientists at the University of Western Ontario, responding to parents' reports of significant improvement in behavior of their autistic children after elimination of wheat and dairy products from their diets, have conducted a lab study using rats which appears to confirm an autism gut-brain connection.

Dr. Derrick MacFabe, director of the UWO research group reported to CBC that the research focused on propionic acid, a short chain fatty acid found in the gut and in bread and dairy products. When the compound was administered to rat's brains:

"They immediately engaged in bouts of repetitive behaviour, hyperactivity and impaired social behaviours which had close similarity to what parents are seeing with autism,"

The rat's brains were later examined and found to contain inflammatory processes similar to those in the brains of autistic children. Screening studies looking at effects of dietary changes in the general population are now under way with MacFabe's team at UWO, Queen's University and Harvard University.

The UWO study reported today will have to be followed up on before conclusions can be drawn. The study itself though is quite revolutionary in so far as it was prompted by observations made by parents of autistic children. Parents' observations of their autistic children are often disregarded or discounted and the greatest long term value of this study may turn out to be that the research team took parents' reports into account as a guide to conducting research into potential causes of autism.

An Open Letter to the CIHR Concerning the New Autism Symposium

September 27, 2007

CIHR Institute of Neurosciences, Mental Health and Addiction
Scientific Director
Dr. Rémi Quirion

Assistant Director, Ottawa
Dr. Barbara Beckett

Project Officer
Asimina Saikaley

Dear CIHR Directors

I have been active in autism advocacy in New Brunswick, and federally, for 9 years, since my son was diagnosed with Autism Disorder at the age of 2. Prior to the previously canceled Autism Symposium I contacted your office with respect to your procedures for selecting community representatives as delegates to the symposium. The symposium was canceled at the last minute. Now I am aware that you are inviting representatives from the "autism community" to attend the newly scheduled "Autism Symposium without input from the provincial societies. At least, you did not contact the Autism Society New Brunswick and request the name or names of delegates to attend at the Toronto airport symposium in early November. Instead you picked the delegates who would attend on behalf of the "autism community".

With respect, you do not have the right to decide who will attend on behalf of the autism community. I am very doubtful that you determine who would represent a professional or scientific body. Yet you have chosen to bypass the Autism Society and decide who, from the New Brunswick autism community, will be invited to attend the symposium. You can call such invitees community representatives but, since they are chosen by you, they are in fact CIHR representatives, not community representatives.

Research on autism issues generates many issues and controversies. The direction research takes has public policy implications. You yourselves, in the official invitation to your community representatives stated that:

"Above all, the symposium is being organized as an opportunity for
knowledge exchange, networking, and community-building."
[emphasis added]

Community-building does not begin by dictating who will be chosen to represent the community. It is unfortunate that you have taken a path chosen often by public relations conscious bureaucracies in the past. I have been involved in such events in New Brunswick over the past few years where the bureaucratic organizers of the events attempted to pick the autism community representatives. Usually they had the good sense to abandon such efforts, realizing ultimately that government or hand picked "community" representatives would lack legitimacy and credibility.

I hope you reconsider your approach to your delegate selection. Or at least, refrain from calling the symposium an exercise in community-building.

Respectfully,

Harold L Doherty
Fredericton NB

cc. Facing Autism in New Brunswick

Stephen Harper's Hand Picked Autism "Stakeholder Representatives"

The Stephen Harper government has a pathetically feeble national autism strategy. Essentially it consists of a mediocre Autism Web Page and a Postponed Autism "Stakeholders' Symposium". The "Stakeholders' Symposium" was postponed at the last minute; purportedly because the Government of Canada couldn't find a big room in which to hold the event. In reality it was cancelled because too many outspoken autism advocates, including me, were being nominated by autism organizations to attend the symposium.

Now the government, and CIHR Institute of Neurosciences, Mental Health and Addiction are sending out invitations to a rescheduled Autism Symposium to be held November 8th-9th, 2007, at the Four Points Sheraton Hotel, Toronto Airport . Prior to sending out the invitations the government, and CIHR, solicited names from various professionals and other individuals from the various regions of Canada to attend. They did not ask the provincial autism societies for names, even though as stated by CIHR Institute of Neurosciences, Mental Health and Addiction Scientific Director Rémi Quirion, PhD and Assistant Director Barbara Beckett, PhD:

"Above all, the symposium is being organized as an opportunity for
knowledge exchange, networking, and community-building."

It is a funny exercise in community building when the government officials and bureaucrats pick who will attend as representatives of community organizations. The decision as to who will represent a community or organization is one that should be made by that community or organization not by other parties. Undoubtedly the delegates chosen will be people who will not rock the Harper Conservative government boat. The PR releases coming from the symposium will also undoubtedly reflect the Harper position, or non-position, on autism generally.

The "Autism Symposium" may turn out to be many things but it will not be an exercise in "community building". It will be just one more page from Stephen Harper's Book of Dirty Tricks - the Autism Edition.

Conor Eager to Get to Middle School

We were anxious about how Conor would handle the transition to middle school this year. We put a plan in place and carried it out with the help of the school team. But Conor is the main player on the team and he has done very well. These pictures taken yesterday show Conor ready to go to school, heading out the door 20 minutes early. He wants to get to middle school!











C'mon Dad get away from the computer.
























Dad put the coffee down, let's go.




















Dad, you are so old and slow!












Ah! Finally, it's about time!

Glutathione Autism Treatment Study Planned

Kosair Children's Hospital and the University of Louisville are planning a study of the use of glutathione, an amino acid that neutralizes harmful molecules. The study, as reported by WHAS11News and Reporter Joe Arnold will involve providing glutathione to 50 autistic children.



Dr. Stephen Wright, the Kosair Medical Director, says he has seen "remarkable" progress in two of three children to whom he has provided glutathione treatment after considering the experience of the Riggle family and reviewing research presented to him by the family. The Riggles saw dramatic improvement in their autistic son after some glutathione treatment. According to Mrs. Riggle the glutathione treatment helps boost a child's' own natural glutathione production and reduces oxidative stress rendering the child less combative.

Dr. Wright expresses some guarded optimism for the treatment (not cure) potential of glutathione based on the Riggle family experience with their autistic son, his own observation of their son after a few treatments and Dr. Wrights observation of the three children to whom he has provided the treatment:

“If we find out this is as good as Mrs. Riggle thinks it is, in what we've seen, then it will be a huge impact,”

The study itself will take some time to unfold as the research team is still writing the research protocol. Glutathione has been advocated as a naturopathic treatment for a variety of disorders including Alzheimersm, dementia, stroke etc. As with any autism treatment parents would be wise not to put too much hope until and unless any touted benefits are confirmed by proper medical and scientific research. The Kosair study may confirm or refute the Riggles belief that glutathione has helped treat their autistic son.


More on Glutathione From Opti-Balance.com a Naturopathic/Alternative Medicine Site


Glutathione Molecule

What is Glutathione?

Glutathione is the most abundant anti-oxidant in the body. It is a tripeptide, made up of cysteine, glutamic acid, and glycine. It is the cystine part that donates the sulphur containing sulphydral group that is important in chelation. Glutathione is special in that it is fat soluble and water soluble, therefore it has anti-oxidant activity throughout the entire body.

Charges Against 6 Year Old Autistic Boy Dropped

Charges against a 6 year old autistic boy were dropped in a Kentucky Court today. That is the positive side of the story involving assault charges brought by a teacher's aide against the autistic boy who grabbed and hit her. The down side is that the charges were ever laid and proceeded to court at all. As the parent of a profoundly autistic 11 year old boy I know that it can be very challenging and can often involve risk of personal injury to anyone working with an autistic child. It takes special individuals and I am not sure that someone who files criminal charges against a 6 year old autistic child is up to the challenge.

Tory Pledges $75 Million To Clear Ontario Autism Wait Lists

The National Post reports that Ontario Conservative Leader John Tory has pledged to clear Ontario's autism wait lists. He has pledged $75 million to clear the lists in 2 years stating that experts have told him it would take at least 2 years to clear the wait lists. The National Post article quotes Autism Canada President David Patchell-Evans as saying that he trusts Tory because he is a businessman. Personally, I suspect that all of the leaders will keep their autism pledges after the grief Liberal leader McGuinty suffered over his broken pledge and betrayal of autistic children and their families.

On an interesting note the National Post indicates that the Liberals lead 41% to the Tories 33% and the NDP 18%. I am not a political analyst but I understand that the Conservatives fumbled badly with the denominational schools issue and stalled any momentum that might have been building. If they have recovered and pick up steam it could suggest a minority government - with NDP holding the balance of power. In any event, with both the Conservatives and the NDP making strong autism pledges this election seems to hold promise for the future of autistic children in Ontario.

The Help Group - UCLA Autism Research Alliance

"Applied research is essential in furthering the development of evidence-based best practices for the effective education of children with autism spectrum disorders"

- Dr. Barbara Firestone, President & CEO of The Help Group and Vice Chair of the California Legislative Blue Ribbon Commission on Autism


On Monday, September 10, 2007, the UCLA Semel Institute for Neuroscience & Human Behavior held a special reception to mark the launch of The Help Group - UCLA Autism Research Alliance.

Los Angeles, CA (PRWEB) September 24, 2007 -- On Monday, September 10, 2007, the UCLA Semel Institute for Neuroscience & Human Behavior held a special reception to mark the launch of The Help Group - UCLA Autism Research Alliance. This spirited occasion was hosted by Dr. Peter C. Whybrow, director of the Semel Institute, and Dr. James McCracken, director, Division of Child & Adolescent Psychiatry at UCLA. The event was attended by UCLA and The Help Group colleagues, faculty and friends, and took place at the Semel Institute on the UCLA campus.

Autism spectrum disorder (ASD) is a complex brain disorder that strikes in early childhood, disrupting a child's ability to communicate and develop social relationships, and often accompanied by acute behavioral challenges. The Help Group - UCLA Autism Research Alliance is an innovative partnership between the two organizations dedicated to enhancing and expanding clinical research, education, and treatment into ASD, and to contribute to the development, greater understanding and use of best practice models by educators and clinicians.

Whybrow, McCracken, Dr. Barbara Firestone, President & CEO of The Help Group and Vice Chair of the Legislative Blue Ribbon Commission on Autism, and Dr. Liz Laugeson, Director of The Help Group - UCLA Autism Research Alliance, shared their remarks about this exciting endeavor. During the proceedings, Whybrow acknowledged Dr. Paul Satz, emeritus professor in the Semel Institute, for his pioneering efforts to develop The Help Group - UCLA Neuropsychology Program, which was established ten years ago, and Dr. Robert Bilder, professor & chief of medical psychology in the Semel Institute for his support of the ongoing collaboration between the two entities.

Whybrow gave a special tribute to Firestone, presenting her with an honorary crystal Bruin Bear in recognition of her vision, leadership and dedication to the development of the alliance. In her acceptance, Firestone thanked Whybrow, McCracken and UCLA colleagues for their commitment to the partnership. "Applied research is essential in furthering the development of evidence-based best practices for the effective education of children with autism spectrum disorders," Firestone noted. "Together, we look forward to opening new doors of opportunity to many more children and families living with autism."

###

The Help Group
Christine Simmons
(818) 779-5312

FEAT BC Autism Evening at CAPONES Restaurant and Live Jazz Club

Vancouver, B.C. – A sold out crowd of parents of autistic children and supporters will be meeting at CAPONES Restaurant and Live Jazz Club, in Yaletown, on the evening of Saturday, September 29^th. Dozens of FEAT of BC parents and supporters will be enjoying BC wines, tapas and entertainment by BC jazz performer, Murray Porter .

FEAT of BC (Families for Early Autism Treatment of BC) is a not-for-profit volunteer organization of parents and professionals working towards universal access to effective, science-based treatment for all Canadians diagnosed with autism.

Jean Lewis, founding director of FEAT of BC, states, “The intense interest in this event mirrors the situation in Ontario, where the Conservative Opposition in the current provincial general election has, presumably based on polling data, chosen to highlight in its television ads the Liberal government’s failure to keep a promise that costs for the treatment of autism would be covered by Medicare.”

FEAT of BC will participate aggressively in the next federal general election campaign, in a dozen or more electoral districts in which the margin of victory last time was less than two percent of the vote.

For more information, contact Jean Lewis at 604-925-4401 or 604-290-5737 or jean.lewis@telus.net

Autism Hell - The Most Painful Autism Decision

In Take My Son - A Family's Painful Autism Reality I commented on the story of Teresa Abernathy of Arizona who made the painful decision to give up her severely autistic son to the care of local authorities when they could no longer care for - or prevent his violent assaults on family members. The decision turned out well for the Abernathy family including the autistic son Colin who has prospered in care and has enjoyable visits with his family.

In Hell of autistic boy's mum Mercury, the Voice of Tasmania, presents the story of an Australian mother who had to abandon her 15 year old severely autistic son to Tasmanian state government officials. The mother attended a meeting with her son and the officials and then simply walked away from the meeting - leaving her son with the government officials. The mother claimed that the boy had been sexually assaulting her, his baby brother and his sister ( who herself has Aspergers ). The state in that area reportedly has not provided services to autistic people and their families leading to such drastic solutions. The mother does not believe she can take her son back but she would like to remain a part of her son's llife.

This mother made the most painful decision on behalf of her family - and her son. I hope it turns out as well as the Abernathy family's situation in Arizona.

Low Functioning Autism

Anyone who has read this site from time to time knows that I am not a fan of the so called Neurodiversity movement. In its essence it is irrational. Neurodiversity (ND) is a group of people who embrace the term "autism" to describe themselves (autistic, autist, autie etc.) a term given to a neurological or neuropsychiatric disorder, but who claim, despite embracing the name of that disorder, that it is not in fact a disorder or disability. They also object to the use of terms like "low functioning" and "high functioning" autism.

Well the truth is that there ARE low functioning autistic persons. Typically they exhibit little or no communication ability or understanding of language. They also may not understand many of the complexities and dangers posed by every day life. My son Conor is low functioning and I am not ashamed to say so. He is a great joy in my life. When I come home from a tough day at work and see Conor's face pressed against the window, waiting for Dad, my spirits soar. I get a "happy buzz" when Conor walks into a room. But he is low functioning. He will never drive an automobile or live independently. He can not be left unattended by adults. And he cannot negotiate crossing a busy street by himself. I am not ashamed of him because he is low functioning. I love him deeply. I enjoy his company. He makes me stronger. But the reality remains that he is low functioning. It would be both foolish and dangerous to his well being to pretend otherwise.

Recently reported stories, some of them very sad, describe the realities of life for some low functioning autistic persons. In a tragic case the body of a 40 year old autistic man with diabetes was found in East Troy Wisconsin after he fell through the floor of a barn. This autistic man did not speak and had wandered off in the past but had been found in unlocked cars.

In the Chicago area a 12 year old autistic boy who never learned to speak had no way to explain to his parents what had caused the horrible bruises on his shins. It turns out that a teacher had forced him to jump for 40 minutes on a trampoline even as he screamed and tried to get down and eventually fell bruising himself on the metal rims of the trampoline. A teachers' aide witnessed the incident and reported it. The teacher has been charged.

In New York a middle aged autistic woman who can not speak was assaulted on several occasions by staff of the facility. Some have been arrested and charged.

In a story with a happier ending a 7 year old boy autistic boy who never learned to speak and who has not been attending school was finally placed by New York city officials in a private school which specializes in teaching children with neurological disorders. The placement was found after the boys story was publicized on the New York Daily News.

Sometimes as in the last incident problems end well. Sometimes autistic children who wonder off and get lost are found safe. But the underlying reality is that there are in fact low functioning autistic persons who can not communicate and display very limited understanding of the world. These recent stories present different aspects of their realities. They are not the realities of some very high functioning autistic persons who claim to speak on their behalf. It is parents, family members and ultimately public officials who actually care for and provide for lower functioning autistic persons. The Neurodiversity movement can help them by not appearing before courts, legislative bodies and the court of public opinion arguing that autism is not a disorder and should not be cured or treated. Such statements do not help lower functioning autistic persons and ... they simply are not true.

Four Strong Autism Winds Gaining Gale Force

In Four Strong Autism Winds I commented on the fact that families with autistic children from across Canada were migrating to Wild Rose country in search of oil rich Alberta's well funded autism programs. The Edmonton Journal has featured this trend today in Alberta a mecca for parents of autistic kids.

The Journal article provides an excellent treatment of the subject and, by the information presented, highlights the need for a National Autism Strategy in Canada. While the Alberta funding is outstanding the immigration of families seeking access to its programs from other parts of Canada is "gumming up the works" increasing waiting lists for all autism services.

Whether the winds of desperation sending autism families to Alberta will ever translate into a Rational National Autism Strategy to address Canada's growing autism crisis remains to be seen. Two solid concrete obstacles stand in the path of such a development - the Stephen Harper Conservatives and the Block Quebecois. Both of these "federal" parties are fundamentally opposed to federal government assistance on health matters and the needs of autistic children are no exception. Any hope for a Rational National Autism Strategy must rest with the Liberals and the NDP, alone or acting together.

Autistic Boy Had No Way to Explain the Horrible Bruises

A 12 year old autistic Chicago area boy, one of three described in the Chicago Sun-Times as allegedly having been abused by Special Ed teacher Patrick E. McCarthy, had no way to explain the bruises on his shins. The boy was forced to bounce for 40 minutes on a trampoline even as he screamed and tried to get down. Eventually he fell smacking his shins on the metal edge of the trampoline. McCarthy is charged with other alleged assaults on autistic children in his class. If McCarthy did as alleged then I hope that he is convicted on the felony charges and serves some serious jail time.

Hopefully too, the neurodiversity ideologues can explain to us how this 12 year old autistic boy's inability to communicate is not a disability. When this boy, and the middle aged autistic woman in a New York residential home who could not communicate, are subjected to criminal abuse and can't tell the world it is absurd to deny that they are low functioning or that their autism disorders are not disabilities.

Anecdotal Evidence Indicating HBOT Effective In Treating Autism

The autism community at large has benefited from the rise of evidence based approaches generally in treating and educating people with neurological and other disorders. An evidence based approach to evaluating interventions ranks the types of evidence available in support of the efficacy and safety of an intervention in treating a particular disorder. Parents seeking treatment for their autistic children have historically been confronted by a range of non evidence based, sometimes bizarre, and sometimes dangerous, interventions.

The insistence by various professional agencies on evidence based standards has helped sort the wheat from the chaff of autism interventions. Evidence based standards have been used to identify a useful intervention like Applied Behavior Analysis, to date the only autism intervention consistently ranked as an effective autism intervention based on the quantity and quality of the research and evidence in support of its effectiveness. Ineffective interventions such as Facilitated Communication, NAET, and swimming with dolphins, to name but a few, have been rejected.

In an evidence based system the lowest ranked type of evidence is anecdotal evidence, personal accounts of the effects of treatment. Such evidence is not subject to any controls which typify scientific inquiry. The interpretation of the evidence is typically very subjective and not subject to any measurement system to provide any accuracy of results. Anecdotal evidence can also be tainted by placebo effects. Despite all these drawbacks though anecdotal evidence is still evidence, albeit of the lowest order. While it should not, by itself, be taken as conclusive in determining the effectiveness of an intervention it should not simply be discarded either. Anecdotal evidence can suggest areas that should be investigated further by professionals conducting research in accordance with scientific procedure and standards.

In Honolulu the Hyperbaric Medicine Center has been conducting a study on the effects of Hyerbaric Oxygen Treatment (HBOT) on children with autism. In the procedure, as reported by KHNL 8, children are placed in a chamber pressurized down to about 18 feet of seawater wearing a mask. They receive 100 percent oxygen at which level they are supposed to receive the healing properties of hyperbaric therapy. Alyshia Busby's daughter was a participant in the HBOT study. The family had tried a range of different treatments for their daughter's autism without seeing any results. With HBOT treatment, according to Ms Busby, there was immediate benefit to her daughter who showed more spontaneous language, attention and focus.

Conclusive evidence of HBOT efficacy in treating autism? No, far from it. But it is some evidence and it will be interesting to read the published results of the Hyerbaric Medicine Center's study.

In Praise of Jenny McCarthy

I do not share Jenny McCarthy's views on the MMR vaccine and autism.

Nor do I believe that she any better able to assess the evidence or the scientific literature on the subject than any other parent of an autistic child. But she does have the gift of celebrity status, the power to command media attention and disseminate her views. And it is harder to get better media attention than to appear on Oprah Winfrey's show. Much more effectively than this humble small town blogger can do. Although I disagree with her views though, I admire her willingness to fight for her child. Ms McCarthy has not embraced the culture of defeat, the attraction of the sweet surrender, of giving in and convincing yourself that there is joy in autism, a profoundly disabling neurological disorder. For that refusal to imbibe the kool aid of the cult of defeat Ms McCarthy deserves credit.

In speaking out and expressing her views on MMR vaccines and autism Ms McCarthy surely knew that she would be the object of ridicule. Some of the commentary is snide, some of it is out and out mean spirited and belittles only those who offer it. A cheap shot artist is a cheap shot artist, whether they sport a Ph. D. or not. Ms McCarthy spoke out to express her beliefs in support of helping her child. A noble cause. And she, and Ms Winfrey who hosted her on her show, are nobler for fighting for that cause. As for Ms McCarthy's friend Jim Carrey I know what it means to be an autism dad by fate. Mr Carrey has freely chosen to take on that role and also earned my admiration.

I don't agree with Ms McCarthy's MMR autism views, although future evidence could still prove her right and me wrong. But I admire her fight for her child, and Ms Winfrey for helping and Mr Carrey for caring and taking on the challenge.

Well done; all three of you.

Autism Treatment Debate on NBC 29

NBC 29, WVIR-TV has a brief on line article on the autism treatment debate. It features some commentary on the effectiveness of ABA, Applied Behavior Analysis, and references kelation (chelation) as an alternative treatment which is NOT clinically approved. The article contain some comments about ABA as an effective autism treatment including observations fro Michael McKee of the Virginia Institute of Autism.

There is an excellent quote from Coy Barefoot. I do not share Mr. Barefoot's views on mercury as the cause of autism but the following quote resonates with me as an 'autism dad' more interested in effective ways to help my autistic son then in giving up and prattling about 'accepting' the 'joys of autism':

"If you told me today that standing on my head in the middle of the street would help my son, I will be there in seconds and I will stand on my head for as long as it takes"

- Coy Barefoot, of Dads against Mercury, father of an autistic son, author of "A Dad's Guide to Autism."

What about the kids with autism who you fought in court, using taxpayers money?

What about the kids with autism who you fought in court, using taxpayers money?

- Conservative leader John Tory to Liberal leader Dalton McGuinty

Liberal leader Dalton McGuinty took a lot of heat during the Ontario leaders debate this evening over his record of broken promises during his first term as Premier of Ontario including the shot from Conservative John Tory above. McGuinty's broken autism promise was also featured in the Conservative leader's opening statement video which featured Tory with a mother of an autistic child who accused McGuinty of breaking his promise to help her child. Tory says : "Broken promises have consequences for families like Kathy's. I want to earn your trust."

Hopefully, autism will not be just a political attack point during the election. Hopefully, all party leaders will remember the autism issue when the next Government of Ontario is seated.

Autism Tsunami - Report of the California Legislative Blue Ribbon Commission on Autism

"Throughout the state there is an intense need to plan for and address the impending housing, transportation, employment and educational needs of the "tsunami" of young people with ASD who will soon transition into a community setting"

-Report of the California Legislative Blue Ribbon Commission on Autism

The Report of the California Legislative Blue Ribbon Commission on Autism urges California policy makers to make Autism Spectrum Disorders a public policy priority and makes recommendations across the life span. While early intervention and education have been highlighted in various public agency reports in North America in recent years this report also highlights the need for employment and housing strategies. It even delves into judicial treatment of autistic behavior which is sometimes marked by aggressiveness.

The authors of this report undoubtedly knew that use of the word "tsunami" would in itself provoke an intense reaction in autism and policy circles. That they chose to do so illustrates the seriousness with which they view the autism crisis in California. The report will undoubtedly be devoured by policy makers across the world in the coming days. California, once again, leads the way in facing up to autism issues.

Autism Myths - Is There Something He Is Really Good At?

Yesterday a very good, kind person who I have known for a while professionally, and who has met my son, asked me whether there was something Conor is really good at. Conor is a great joy in my life and I am pleased that he has made progress with language and understanding life primarily by ABA intervention. But he does not have a special gift or talent. The idea that autistic persons all possess some special gift is one of those enduring myths of autism. One unfortunately, that is perpetuated with each media example of one of the talented individuals with autism who do in fact exist.

The myth that ALL autistic persons enjoy a special gift is also perpetuated by the neurodiversity ideologues who assert that autistics have a different, even superior intelligence. These same ideologues like to identify as autistic any historical figure of great intelligence or accomplishment from Einstein to Van Gogh. They also like to deny that many autistic persons are in fact intellectually challenged and that many live out their lives dependent on the care of others, sometimes in institutional settings. Hiding this unfortunate reality is one of the true offenses of the neurodiversity movement. They try to draw society's attention away from the plight of lower functioning autistic persons, rendering them invisible. Lower functioning, non verbal autistic persons are the victims of a myth, they are the victims of true stigma.

Autistic Teen Runs Through Traffic, Gets TASERed

If you are believe some of the internet rhetoric you might not think that autism is a serious disorder. People, particularly parents, who try to inform you otherwise are often shouted down by the internet crowd that wants to take ownership of autism and pretend that it is simply another variation of the human condition, not a disorder. But reality delivers some rude jolts to this internet based ideology. One such jolt occurred recently when a 15 year autistic boy ran away from an Orange Co. California social services centre and ended up running through traffic until he was TASERed by police and returned to his family. Fortunately the young man is reported to be in good condition.

Autism - Some Times The Media Gets It Right

Sometimes the media gets autism right as in this summary on The Times-Tribune.com.

Autistic Child Suspended From Fayetteville School

If you think autism is all about high functioning savants and allegedly "low functioning" autistic adults who dispense internet advice and hobnob with Dr. Sanjay Gupta, Anderson Cooper and UK Guardian reporters think again. The Fayetteville Observer reports an all too common story of a non verbal, autistic boy who was suspended from school for an outburst of aggressive behavior. In effect, the boy was punished for being autistic. The school response was not unique to Fayetteville by any means and we have seen it happen here in New Brunswick on occasion although generally matters here are improving.

The school authorities should probably do a functional analysis of the incident, including a thorough analysis of the child's environment, program of instruction and learning methodology. Being in North Carolina the school will probably be involved with a TEACCH approach. It might be wise though to consider ABA, still the only evidence based proven effective educational approach for autistic children, particularly non verbal autistic children. TEACCH or ABA, the child should not simply be punished for behavior which arises directly from his Autism Disorder. The next step for some autistic children, unfortunately, is punishment in the criminal courts, punishment for being autistic.

As a lawyer, here in New Brunswick, I have seen it happen.

Autism Society New Brunswick AGM - October 13

Annual General Meeting
Saturday October 13, 1-4 pm
Crowne Plaza, Fredericton





The theme of the annual general meeting of the Autism Society New Brunswick this year is Autistic Youth and Adult Residential Care and Treatment in NB. I am privileged to be the featured speaker and will address those present on the current state of residential care and treatment services for autism in New Brunswick, discussions with the Province of New Brunswick in relation to these critically important matters.

These discussions could have a significant influence on the future course of youth and adult residential care and treatment in New Brunswick which, as it now stands, is in serious need of upgrading. We all hope that our children outlive us and have long and happy lives after we are gone. Now is the time to take steps to ensure a positive future for your autistic children in New Brunswick. YOU are a stakeholder in the most important sense of that expression. ASNB recognizes that and urges everyone in New Brunswick with an autistic loved one, and autistic persons themselves, to attend this meeting.

Please contact ASNB at autism_nb@yahoo.com to confirm your attention to attend.
You may also send me an email at either of these two email addresses:
dohertylaw@rogers.com or AutismRealityNB@gmail.com

I hope to see you at the Crowne Plaza in Fredericton on October 13.

Harold L Doherty