Autism Awareness Month & the Autism Society New Brunswick

October is Autism Awareness Month in Canada and as it draws to an end I would like to say a few words about the Autism Society New Brunswick which is the only provincial voice for autism in New Brunswick. First, and foremost, ASNB is a democratic volunteer organization open to persons with an interest in autism in New Brunswick. General meetings of the ASNB membership are held at least 3 times a year in different locations around the province. Policy at ASNB is set by the board in consultation with membership; not by paid executive directors.

The ASNB does not receive money from government to conduct its operations. When ASNB assists parents in discussions with government, education or health authorities it does so with no conflicting interest. It is not tied to government grants and it is not required to comply with government regulations or policies which tell it what it can and can not say to its members.

Notwithstanding its fiercely independent voice, ASNB was recognized as the voice for the autism community by government by enactment of regulation 97-127 pursuant to the Mental Health Services Act.

NEW BRUNSWICK

REGULATION 97-127

under the

MENTAL HEALTH SERVICES ACT

(O.C. 97-900)

Filed November 14, 1997

Under section 12 of the Mental Health Services Act, the Lieutenant-Governor in Council makes the following Regulation:

1 This Regulation may be cited as the Mental Health Services Advisory Committee Regulation – Mental Health Services Act.

2 In this Regulation

“Act” means the Mental Health Services Act;

“Committee” means the Mental Health Services Advisory Committee.

3(1) The following mental health interest groups are prescribed for the purposes of paragraph 5(1)(b) of the Act:

(f) Autism Society New Brunswick;

The ASNB has been a key partner in the UNB Autism Steering Committee and has participated in such committees as the Dialogue on Education Committee and the Ministerial Committee on Inclusive Education. It also participated in the ad hoc committees that were struck to examine the continued provision of tertiary care services for autistic persons at the Stan Cassidy Centre.

ASNB has helped raise public awareness of autism around the province purchasing books on autism and evidence based interventions for autism for the New Brunswick Public Library System, for community autism centres and for autism agencies. It has also been a key participant in the recent National Autism Strategy initiative advanced by Andy Scott and the students in Greg Peters Leo Hayes High School class.

On this last day of October, Autism Awareness Month in Canada, I recommend that anyone with an interest in autism in New Brunswick visit the ASNB website at :

http://www.autismnb.org/

Study – Vitamin B12 Injections for Autism Show No Signs of Benefit

The biggest challenge confronted by parents of children newly diagnosed with autism is what to do about it; how can they help their children, what treatments should they seek to cure their child or at least improve their quality of life. ABA has been widely endorsed as being an evidence based effective intervention but it is complex and expensive. “Alternative” treatments abound as cheaper, easier alternatives, and parents can end up losing their valuable funds and even more valuable time – time which is critical for the their childrens’ development – exploring unproven, ineffective, alternative treatments. When my son was diagnosed secretin was the flavor of the day. So too was vitamin B-12 treatment. Now a study by University of California at Davis professor and colleagues indicates that there is no benefit to B-12 treatment.

http://www.medpagetoday.com/MeetingCoverage/AACAP/tb/4401

SAN DIEGO, Oct. 30 — Preliminary results of a small ongoing study of vitamin B12 injections for children with autism showed no signs of significant benefit, researchers reported here, but they remained hopeful.

So said Lesley J. Deprey, Ph.D., of the University of California at Davis, and colleagues, in a poster presentation at the American Academy of Child and Adolescent Psychiatry meeting here.

Their hope, they noted, derived from “anecdotal reports of remarkable clinical improvements” using subcutaneous vitamin B12 (methyl cobalamin), although there have been no supporting published studies. Vitamin B12 is an antioxidant involved in metabolism pathways for cellular methylation, which has been implicated in other neurological disorders like schizophrenia and Alzheimer’s Disease.

The researchers reported that no significant benefits have turned up yet for the 14 patients who have completed three months in the current double-blind crossover study. They found no significant differences with active versus placebo treatment for the following measures:

• Clinical Global Impression Scale Improvement (P=0.4129),
• Peabody Picture Vocabulary Test scores (P=0.2895), and
• Social Communication Questionnaire verbal results (P=0.4211).

A significant improvement found for nonverbal Social Communication Questionnaire scores in the vitamin B12 group compared to placebo (P=0.0309) disappeared after adjusting for multiple testing.

Pics – National Autism Strategy Debate October 27 2006

History was made Friday, October 27, 2006, with the debate on Fredericton MP Andy Scott’s private member bill M-172 calling for a National Autism Strategy. Here are a couple of pics for the history books.

Bottom: Andy Scott at a reception after the first hour of debate surrounded by supporters.

Top: National autism advocate Andrew Kavchak and Dr. Sam Yassine father of 6 year old Amjad Yassine who was completely non verbal at the age of 4 but is now thriving and entering a regular school at age 6 – after two years of ABA therapy.

Bite Marks and Hair Brushes – Environmental Sensitivity of Autistic Chidlren

In the debate over education of autistic children it is difficult to impress upon professional educators that for some autistic children, who are very environment sensitive, the mainstream classroom is NOT the best learning environment, that for some the classroom is an overwhelming experience that can, as it did with my son Conor, result in self injurious behavior. Conor would come home from school with bite marks self inflicted from frustration.

In Conor’s case the local school and district officials cooperated and removed Conor to a quieter location where most of his learning takes place with occasional, well considered, and purposeful visits to the classroom for specific tasks and interaction with other students. Not all parents of autistic children receive such enlightened cooperation when it comes to their children. Some educators simply do not understand that autistic children are environmentally sensitive and can be overwhelmed to the point of self injury by too much stimulation or even change in their environment.

This morning an innocuous event which illustrates my son’s environment awareness and sensitivity occurred when he rose a bit early to use the bathroom. I lent my arm to him for support as he staggered to the bathroom. Groggy and half awake he entered the bathroom still staggering a bit when he spotted a hair brush with the bristles face down on the counter. Conor stopped to turn the brush over so that the bristles would face upward as they usually did. The smallest details of his environment do not escape his attention even half awake in the early morning while on his way to perform an urgent task.

Bill M-172 National Autism Strategy – Contact Your MP Now

***REQUEST***

Please contact your Member of Parliament right away

And encourage him or her to vote in support of

Andy Scott’s private member motion M-172

Calling for a National Autism Strategy

Bill M-172 (National Autism Strategy)

M-172 — May 15, 2006 — Mr. Scott (Fredericton) — That, in the
opinion of the House, the government should create a national strategy
for autism spectrum disorder that would include: (a) the establishment,
in cooperation with provincial governments, of national standards for
the treatment of autism spectrum disorder and the delivery of related
services; (b) the study, in cooperation with provincial governments, of
the funding arrangements for the care of those with autism spectrum
disorder, including the possibility of transferring federal funds to
assist provincial governments to provide no-cost treatment, education,
professional training and other required supports for Canadians with
autism spectrum disorder without unreasonable wait times; (c) the
creation of a national surveillance program for autism spectrum disorder
to be managed by the Public Health Agency of Canada; and (d) the
provision of funding for health research into treatments for autism
spectrum disorder.

***REQUEST***

Please contact your Member of Parliament right away

And encourage him or her to vote in support of

Andy Scott’s private member motion M-172

Calling for a National Autism Strategy

Health Care Providers Oppose Kirby’s Autism & Vaccine Views

Health care providers are objecting to the presentation by David Kirby at a conference which began yesterday in Halifax. Kirby is the journalist and author of “Evidence of Harm” a book which purports to examine the debate between medical authorities and parents of autistic children who believe that the mercury based preservative thimerosal used in some vaccines is to blame for their childrens’ autism.

The theory of a causal link between thimerosal and autism has been soundly rejected by medical and scientific authorities but SOME parents do not accept those views and believe that there is a “Big Pharma” conspiracy to suppress evidence of the link – evidence of harm – as Kirby’s book is titled. Kirby is accused by some authorities of stoking the fears of parents and contributing to a downswing in vaccinations thus causing a revival of serious, even deadly diseases, once thought vanquished by vaccination programs. Personally, I have never bought into the theory that vaccinations cause autism, but obviously further research could prove me wrong. As of right now the research literature does not support such a link.

There is much research being done now into the causes of autism. Whatever the cause/causes of autism might be it is critically important that any conclusions we reach are based on careful scientific study and clear evidence derived from those studies. Fear should never be a substitute for careful study and analysis. That is the opinion of this parent.

From the Daily News:

http://www.hfxnews.ca/index.cfm?sid=9094&sc=2

Joanne Langley, pediatric infectious disease specialist at the IWK, said the idea that thimerosal, an anti-bacteria preservative containing mercury found in some vaccines, could contribute to autism was raised about 15 years ago, but was later retracted.

“There is now a huge body of evidence that shows there is no association between infant vaccines and autism,” she said, adding that thimerosal has not been used in children’s vaccines in Canada for 10 years.

Langley also said it’s important that parents know vaccines are safe and information to the contrary is “fear mongering” and could be dangerous.

“If they’re concerned and don’t immunize their children, they are susceptible to those infectious diseases, which are very serious.”

National Autism Strategy Motion Debate To Continue 3rd or 4th Week in November

The debate of Fredericton MP Andy Scott’s national autism strategy private member’s bill started today in the House of Commons and aired on CPAC. It was encouraging to see a lot of important information about autism, evidence based treatment, particularly ABA aired in the H of C. The Leo Hayes class of teacher Greg Peters was praised for the tremendous effort they have made on behalf of the autism cause nationally. It was also great to hear Andy read Fredericton area resident Brian Rimpilainen’s letter about his autistic child and some of the realities of life for a family with an autistic child. It was tough to sit still as the Bloc Quebecois speakers squabbled about protecting Quebec’s constitutional turf. It was difficult to say where the Conservatives were going with their comments.

For many of us in New Brunswick who have fought for years for government funded evidence based pre-school treatment, autism trained TA’s to work with autistic students, and decent residential care for autistic youths and adults it was nice to be able to sit back and let advocates like Andy Scott, Nova Scotia NDP MP Peter Stoffer and Brampton-Springdale (Ontario) Liberal MP Ruby Dhalla do the heavy hitting and educate Canadians about autism today in the House of Commons.

Debate did not conclude today and I am informed by Andrew Holland, executive assistant to Andy Scott, that the debate and vote will probably be continued and concluded in either the 3rd or 4th week of November.

2 30 PM Autism Motion Debate Now At 2 30 PM

I have been informed that the debate on the National Autism Strategy motion will now be heard at 2:30 PM Atlantic time.

Autism Community’s Friend In Ottawa

Fredericton MP Andy Scott is leading off the historic debate on a Nation Autism Strategy in the House of Commons tomorrow. In New Brunswick he has been assisted by Leo Hayes High School students in Mr. Greg Peter’s class for two consecutive years. ASNB has also contributed much to the national campaign led by Luigi Rocca, Lila Barry, Nancy Blanchette, Dawn Bowie and Brian Rimpilainen.

In Ottawa Andrew Kavchak has been an unrelenting advocate for a national autism strategy. The following pictures and description can be found on the Canada Autism Petition page at http://canadaautism.com/Default.aspx?tabid=97 .

Protest on The Hill

Andrew Kavchak is an Ottawa father of a boy who was diagnosed with autism in 2003. From March to November 2004 Andrew protested on Parliament Hill during his lunch hour breaks. Recently, on June 1, 2005 he recommenced his noon hour protest on the Hill. Andrew tries to lobby politicians and journalists as they walk by. He also engages in a lot of public education and asks visitors to the Hill to sign the autism treatment petition.

Flashback – Andy Scott Addresses Autism Rally on Parliament Hill April 24, 2006

On the eve of tomorrow’s historic National Autism Strategy debate it is important to remember that such events do not spring up overnight. Here is Andy Scott speaking at a National Autism Strategy rally on April 24th.