Saturday, March 15, 2008

W5 Shows two parents stories MARCH 22 08

AFA Shares this posting, Tammy Starr and Micheal Dewit's children are featured Do not miss out.

Planned broadcast for March 22, 7 pm EST to include my son in a piece
Posted by: "Michael Dewit"
Sat Mar 15, 2008 4:13 am (PDT)
All of you know Nicholas is autistic, which is why I am giving you a heads
up that this program is running a show on the topic ... and no, I will not
get to see it ahead of time, so I do not know what the content will exactly

The show is supposed to be about kids with autism and what they are capable
of if they get the right help, in Nicholas' case on average 40 plus hours of
ABA a week over the years and lots of speech therapy

No doubt it will have a political angle to it (those of you that know me
well are fully aware of my frustration with a system that treats autism as a
condition like a second class or third class citizen), but my hope is really
that the show will give at least equal time to the message that you cannot
give up on these kids / do not underestimate them just because they learn
differently ... with the right help they can learn when they are younger and
they can continue to learn ... in Nicholas' case he learns far more now than
he did when he was younger and we have no doubt he has more surprises in
store for us yet

Nicholas is far from perfect (but who is?), but he continues to do things
that in the past we were told he would not be able to ... which is why the
program gathered footage on Nicholas (and at least 2 others kids whose
parents I leave it to mention as they choose)

http://www.ctv. ca/wfive

Is the network and program

If you know anything about TV shows they at times can change when and what
they will air, so the date and time might still change but we are hoping
not, and no doubt some of you cannot get this live (but the show / CTV
network should make the show available over the internet at this web site
once it has aired) ... but I wanted to let people know this event is
occurring ...

If I have added info / clarity before the 22nd I will send that on

Wednesday, March 12, 2008

autism news articles March 7-12 2008

Autism News Articles
March 7th – March 12 th 2008

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Autism Town Hall Meeting with Minister Matthews and Minister Wynne

The Alliance for Families with Autism (AFA) is pleased to announce we are
hosting a Town Hall Meeting regarding the issues surrounding autism on
Tuesday, March 18, 2008. The meeting will include Ministers from the
Ministry of Children and Youth Services as well as the Ministry of

In attendance will be Hon. Deb Matthews, MCYS and Hon. Kathleen Wynne,
MEDU. All parents and families are welcome to attend this unprecedented
event. It is a unique opportunity for the autism community to voice their
opinion with regards to current programs and receive an update from both
Ministers regarding the direction of their ministries for the future.

The Alliance for Families with Autism (AFA) is a volunteer organization.
Our executive members include parents and a grandparent of children with
autism. Our mission is improving the lives of children and adults affected
by autism. We continue to provide factual information in a non-partisan
approach to all stakeholders.

LOCATION: Bur Oak Secondary School, 933 Bur Oak Avenue, Markham, Ontario
(The link below will provide you with a map of the location)

DATE: Tuesday, March 18, 2008

TIME: 6:30 PM - 8:30 PM (Doors will open at 6:00 pm)

Stop at NOTHING When you have Autism and ALS

This amazing woman, I bow to.


Families hoping for autism therapies in public schools before Appeal Court
Posted By Colin Perkel
Posted 1 month ago
Parents fighting to have their autistic children receive specialized therapies within the public education system go before Ontario's highest court on Monday in an emotionally fraught case that has huge financial stakes for both the families and taxpayers.
Described as a "make or break" day by one parent involved, the five families are trying to sue the Ontario government and seven school boards for negligence and damages, accusing them of failing to provide or properly fund the expensive therapies in schools.
Known as intensive behavioural intervention and applied behaviour analysis, the therapies for the poorly understood neurological condition that causes developmental disability and behaviour problems can cost between $30,000 to $80,000 a year for each child. "Families go to extremes," said Taline Sagharian, of Richmond Hill, Ont., whose 11-year-old son Christopher is autistic. "Six years ago, we had to sell our house. We've cashed in our investments and any assets that we have . . . and we continue to go through financial problems."
In 2004, the families filed a $1.25-billion lawsuit, which has yet to be certified as a class action, arguing their children were victims of discrimination because other kids with special needs receive both therapy and their education within the publicly funded school system.
Last March, Ontario Superior Court Justice Maurice Cullity sided with the provincial government in striking down several of the key claims, including negligence and damages.
However, he let stand the discrimination claim and in later dismissing the province's demand for $85,000 in legal costs, Cullity recognized the public importance of the issue, giving hope to the families that they might still have a case.The plaintiffs are hoping to persuade the Ontario Court of Appeal during Monday's one-day hearing that they should be allowed to sue for damages if their class action is eventually certified.
From Nancy Morrison:
Hi Everyone:

In my last mailing I shared with you a letter sent to many of us who had previously written to the members of the Benchmark Panel. In that letter reference was made to a paper prepared last November, Development of Clinical Practice Guidelines for the Delivery of Intensive Behavioural Intervention for Children with Autism Spectrum Disorder in Ontario - Nov 2007. Thanks to a listmate who helped out in scanning the paper, I am able to attach a pdf version of that paper to this mailing.

I hope everyone will be able to review the document, and I will repeat the posting from the last mailing and the reponse letter here. I am sharing this information so everyone who can take the time to write your concerns to the Panel Members and Ministers can take the time to do so this week, and for everyone to come knowledgable and prepared to the Town Hall Meeting next Tuesday evening. I will also repeat the Town Hall Meeting announcement directly below for everyone's quick reference.



The Benchmarks concern:

Many of us that sent letters (keep them going) to the Benchmarks Panel members recieved the following correspondence. I am sharing it with all listmates, I think we all need to review this letter, it will help further identify personal areas of concerns regarding the Benchmark approach to cutting off funding for our kids. Remember, the government wants to see the waitlist reduced, but don't want to increase the funding for our kids. By bringing in a Benchmark approach, this will ultimately cut off kids that are either succeeding well with their IBI, or are moving at a slower pace. With cutting off these identified children from funding, the waitlist would then decrease, but not with a budget increase to help all our kids, but a shift in who is getting the funding. Can we afford to sit back and allow the Ministry to play God with our kids and decide which of our children is worthy and which of our children should be cast aside as unworthy of getting the help they need and deserve????

I think we can look at a child like Carly Fleischmann and see what will develop in our kids as they get older if we continue to provide them with ABA/IBI funding, a child who would not have achieved "Benchmarks" in their younger years. How can we cast aside children like this as a waste of time and resources. And if children are doing well in IBI, how can we remove the very support that is successful for them and throw them to the wolves and expect them to change their learning to the typical classroom setting. A Benchmarks approach is devasting news for all our kids, and in my opinion is yet another form of discrimination based upon the disability called autism.

I have a hard copy of the brief summary version of the "Development of Clinical Practice Guidelines for the Delivery of Intensive Behavioural Intervention for Children with Autism Spectrum Disorders in Ontario", dated November 2007. If someone has a source for others to view this document online, please share it with me and I will include that in the next mailnig.

From the Benchmark’s Panel

March 6, 2008

Dear Parents and Stakeholders:

I am writing to you as the Chair of the Benchmark Development Expert Panel to provide you with an update on our work.

First, I want to thank you for the interest you have expressed in the Benchmark Development Expert Panel, and to let you know that the important issues raised by parents and stakeholders will be shared with the panel and taken into consideration.

As you may know, in October 2006, the Ministry of Children and Youth Services established an Expert Clinical Panel (ECP) for the Autism Intervention Program. It was an independent, arms-length panel asked to develop a set of clinical practice guidelines that would enable consistent clinical decision making in the delivery of Intensive Behavioural Intervention (IBI) services. The ECP, which was chaired by Dr. Peter Szatmari, completed its report entitled: “The Development of Clinical Practice Guidelines for the Delivery of Intensive Behavioural Intervention for Children with Autism Spectrum Disorders in Ontario” in January 2008. The ECP sought advice from parents and other ASD experts regarding the development of the Clinical Practice Guidelines. I was a member of that panel which also included a parent representative, autism researchers, a direct funding provider, and a clinical director.

That Expert Clinical Panel for the Autism Intervention Program recommended that, in order to implement the clinical practice guidelines, benchmarks needed to be developed to measure change, to be used in conjunction with the Clinical Practice Guidelines. Benchmarks are a common tool used with clinical practice guidelines in other areas like health services.

In response to the Clinical Practice Guidelines, a new independent and arms-length expert panel, the Benchmark Development Expert Panel, was established to develop benchmarks that could be used to support the implementation of the Clinical Practice Guidelines. These benchmarks are intended to be used to monitor progress and facilitate decision-making regarding continuation of children in IBI.

The Ministry has indicated that the Clinical Practice Guidelines will not be implemented until the Benchmark Panel has completed its work. At that time, the ministry will work with autism service providers and others regarding implementation.

I am pleased to be chairing this panel which includes in its membership: two parent representatives, a direct funding provider, representatives from the Expert Clinical Panel and additional clinical experts and researchers (updated membership list attached). Dr. Peter Szatmari is an ex-officio member of the panel.

The Benchmark Development Expert Panel’s work plan includes:
• a review of the related literature;
• development of benchmarks;
• development of an evaluation process for the benchmarks;
• consultation with Dr. Szatmari and the other members of the Expert Clinical Panel as the benchmarks are developed to help the Benchmark Panel ensure that the benchmarks are consistent with the Clinical Practice Guidelines; and
• an engagement plan to consult with a range of stakeholders including parents of children in the IBI program (DSO and DFO), other parents of children with ASD, autism service providers and experts in the field of ASD

The Benchmark Development Expert Panel has had two meetings so far, and is working on a very tight timeline to complete its work on the final benchmarks for the CPGs.

The panel values your input and interest as we tackle this challenging task, and appreciates your understanding as we work to establish a consistent and transparent process. We fully appreciate that the panel’s work is of paramount importance to parents and professionals.


Dr. Nancy Freeman, C. Psych.
Chair, Benchmark Development Expert Panel

From a Listmate

HANDS ON VB WORKSHOP by Establishing Operations Inc.
Holly Kibbe & Cherish Twigg
Thursday and Friday May 29-30, 2008 - Ottawa Canada

This 2-day workshop is designed to provide consultants, therapists and parents with an active role in their child’s language program, with guided practice in teaching early to advanced learners with autism in the natural environment. If you work with early, intermediate or advanced learners, this workshop is for you! The participants will spend time viewing video taped illustrations of children with autism and practicing the methods of effective instruction demonstrated during Introductory VB Workshops. Participants will receive the opportunity to develop NET programs of various learner levels and will receive precise feedback on their teaching methods.

Contact for the workshop

$375 or $395 US dollars

From a listmate

Time Magazine:

http://www.time. com/time/ health/article/ 0,8599,1721109, 00.html

Case Study: Autism and Vaccines

Monday, Mar. 10, 2008


Hannah Poling, left, stands with her parents Terry and Jon Poling, right,
at a news conference in Atlanta on March 6, 2008. Government health
officials have conceded that childhood vaccines worsened a rare, underlying
disorder that ultimately led to autism-like symptoms in Hannah, and that
she should be paid from a federal vaccine-injury fund.
W.A.Harewood / AP

What happened to little, red-haired Hannah Poling is hardly unique in the
world of autism. She had an uneventful birth; she seemed to be developing
normally — smiling, babbling, engaging in imaginative play, speaking about
20 words by 19 months. And then, right after receiving a bunch of vaccines,
she fell ill and it all stopped. Hannah, now 9, recovered from her acute
illness but she lost her words, her eye contact and, in a matter of months,
began exhibiting the repetitive behaviors and social withdrawal that typify
autism. "Something happened after the vaccines," says her mom, Terry
Poling, who is a registered nurse and an attorney. "She just deteriorated
and never came back."

Parents of kids like Hannah have been fingering vaccines — and, in
particular, the mercury-based vaccine preservative thimerosal — as a cause
of autism for over a decade, but researchers have repeatedly failed to find
a link.What's unique about Hannah's case is that for the first time federal
authorities have conceded a connection between her autistic symptoms and
the vaccines she received, though the connection is by no means simple. A
panel of medical evaluators at the Department of Health and Human Services
concluded that Hannah had been injured by vaccines — and recommended that
her family be compensated for the injuries.

The panel said that Hannah had an underlying cellular disorder that was
aggravated by the vaccines, causing brain damage with features of autism
spectrum disorder (ASD). special federal vaccine court has yet to award
damages, but the recommendation, made public last week, is causing a
sensation in the autism advocacy community. The Polings, who live in
Athens, Ga., were originally part of a group of nearly 5,000 families with
autistic children seeking damages through the National Vaccine Injury
Compensation Program. The other cases remain before the court.

The Poling case is also causing deep concern among public health officials,
eager to reassure parents that vaccines are safe and, indeed, hugely
beneficial. In a public statement on Friday, Dr. Julie Gerberding, director
of the Centers for Disease Control and Prevention (CDC), insisted that "the
government has made absolutely no statement about indicating that vaccines
are the cause of autism, as this would be a complete mischaracterization of
any of the science that we have at our disposal today."

Gerberding and other health authorities point out that the benefits of
vaccines far exceed their risks. They also note that thimerosal was
eliminated from routinely administered childhood vaccines manufactured
after 2001, and yet autism rates have continued to climb. The current CDC
estimate is that 1 of 150 American children has an autism spectrum disorder.

Nonetheless, there's no denying that the court's decision to award damages
to the Poling family puts a chink — a question mark — in what had been an
unqualified defense of vaccine safety with regard to autism. If Hannah
Poling had an underlying condition that made her vulnerable to being harmed
by vaccines, it stands to reason that other children might also have such

But there are circumstances that make Hannah's case a bit unusual. For one
thing, she received an unusually large number of vaccines in 2000 (when
thimerosal was still in use). Because of a series of ear infections, Hannah
had fallen behind in the vaccine schedule, so in a single day she was given
five inoculations covering a total of nine diseases: measles, mumps,
rubella, polio, varicella, diphtheria, pertussis, tetanus, and Haemophilus
influenzae. "That was just too many vaccines," says Terry Poling. "I didn't
find out for several months that they had thimerosal, which contains
mercury, a powerful neurotoxin. Had I known, I never would have allowed it
to be injected into my child."

Another confounding issue in Hannah's case is the finding that she suffers
from a mitochondrial disorder — a dysfunction in basic cell metabolism.
Mitochondria serve as power generators for each cell in the body,
converting food and oxygen into energy. There are a wide range of these
disorders, causing symptoms that vary widely but can include muscle
weakness, cardiac or liver disease, diabetes, developmental delays and
susceptibility to infection. In Hannah's case, the vaccine court determined
that the underlying dysfunction of her mitochondria put her at an increased
risk of injury from vaccines.

That decision, however, comes as a surprise to experts on mitochondrial
disorders. In response to the Poling case, the United Mitochondrial Disease
Foundation has released a statement saying, "There are no scientific
studies documenting that childhood vaccinations cause mitochondrial
diseases or worsen mitochondrial disease symptoms."
Dr. John Shoffner, the Atlanta-based neurologist who identified Hannah
Poling's mitochondrial disorder, is "genuinely puzzled" by the court's
judgment. Shoffner, who has been studying and treating these disorders for
20 years, says it's impossible to say whether Hannah's mitochondrial
disorder was, in fact, a pre-existing condition that set the stage for her
autism (as the government contends) or if it developed along with her
autism. A specialist in mitochondrial disorders, he is investigating the
relationship between autism and these disorders and plans to present a
paper on the topic at the annual meeting of the American Academy of
Neurology in April. "In some subset of people with ASD — a small group of
patients, I think — mitochondrial dysfunction is an important part of their
disease. But it's too early to say whether it gets the ball rolling or if
it comes about after the ball got rolling."

Experts on autism spectrum disorders believe that most cases are caused by
a combination of genetic vulnerabilities and environmental factors. There
may be hundreds of roads to autism, involving numerous combinations of
genes and external factors.
Could thimerosal or some other aspect of vaccines be one of these factors?
"It's always possible that there's a small subset of kids that have this
vulnerability, " says Dr. Isaac Pessah, director of the Center for
Children's Environmental Health and Disease Prevention at the University of
California, Davis. Pessah's lab is looking at dozens of possible
environmental factors, including pesticides, plastics and flame-retardants.
"This is a very emotional debate," he says, "and we need more research
directed at these questions."

It's difficult to draw any clear lessons from the case of Hannah Poling,
other than the dire need for more research. One plausible conclusion is
that pediatricians should avoid giving small children a large number of
vaccines at once, even if they are thimerosal-free. Young children have an
immature immune system that's ill-equipped to handle an overload, says Dr.
Judy Van de Water, an immunologist who works with Pessah at U.C. Davis.
"Some vaccines, such as those aimed at viral infections, are designed to
ramp up the immune system at warp speed," she says. "They are designed to
mimic the infection. So you can imagine getting nine at one time, how sick
you could be." In addition, she says, there's some evidence, that children
who develop autism may have immune systems that are particularly slow to

Van de Water worries that current vaccine schedules may be overly
aggressive for some children. She suggests that parents who are concerned
about vaccine safety ask their pediatricians to give fewer at a time. And,
she adds, don't vaccinate a child when he or she is ill.

Hannah Poling is now a third grader in public school, working one-on-one
with teachers in a special-ed classroom. She continues to struggle with the
effects of autism and also has seizures. Her parents are hoping her case
will spur additional research into the causes of autism, including the
roles of vaccines and mitochondrial disorders.
"My daughter's case raises more questions than it answers," concedes her
father, Dr. Jon Poling, a neurologist who also has a Ph.D. in biophysics.
Poling believes in the importance of vaccinating children: "Vaccines are
one of the most important advances in the history of medicine," he says,
"but people need to know there is a risk to every medicine. There may be a
small percentage of people who are susceptible to injury." He and his wife
would like to see thimerosal eliminated from flu vaccines, which continue
to be given to children and pregnant women, a fact that, he thinks, could
be one reason autism rates haven't declined. And he urges pediatricians to
take a hard look at the schedule on which vaccines are given. "I think we
need a grassroots movement among pediatricians to be more conservative, and
not give so many shots at once."


ust a reminder that one of the world's greatest autism experts, Dr
Lorna Wing, will be the first participant in this year's series of one-day
online seminars on Awares, the website of Autism Cymru (Wales'
National Charity for Autism), this Friday (March 14, 2008).

Don't miss this unique opportunity to put your questions to Dr Wing -
who invented the concepts of the autistic spectrum and the triad of
impairments and coined the term Asperger's syndrome.

You can register right now at

I will actually be opening up the seminar at midnight UK time on March
13 to allow for the time difference in countries like Australia so that
people there can post their questions. However, Lorna Wing herself
will come online at 9am UK time on March 14 to respond to questions and
will be available throughout the day until 5.30pm UK time.

Best wishes,

Adam Feinstein


AWARES Conference Centre

from Ellen

Ellen Notbohm Named 2007 ForeWord Book of the Year Finalist
The Autism Trail Guide captures the author’s third nomination in as many years
Portland, OR – March 8, 2008 – In a rare “three-peat,” autism author Ellen Notbohm’s latest release, The Autism Trail Guide: Postcards from the Road Less Traveled (2007, Future Horizons, Inc.), has been named a finalist in ForeWord magazine’s prestigious 2007 Book of the Year Awards competition. The nomination is Ms Notbohm’s third in as many years. Her previous books, the widely-praised Ten Things Every Child with Autism Wishes You Knew and Ten Things Your Student with Autism Wishes You Knew, were finalists in 2005 and 2006 respectively.
The Autism Trail Guide: Postcards from the Road Less Traveled is an anthology of Ms Notbohm’s columns and essays from Autism Asperger’s Digest and other publications over the past several years. It was released in October of 2007 and sold out its first printing almost immediately.
ForeWord Magazine's Book of the Year Awards recognize the literary achievements of independent publishers and their authors. This year’s competition drew nearly 1,600 entries from 350 publishers. A jury of readers, librarians and booksellers will judge based on editorial excellence, professional production, originality of the narrative, author credentials relative to the book and the value the book adds to its genre. Gold, Silver, and Bronze winners, as well as Editor's Choice Prizes for Fiction and Nonfiction will be announced at BookExpo America Convention in Los Angeles on May 29.
Ms Notbohm is also the co-author, with Autism Asperger’s Digest managing editor Veronica Zysk, of 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders. That book won the 2006 Teacher’s Choice award from Learning magazine. A second Great Ideas volume by Ms Notbohm and Ms Zysk is slated for 2009 release.
Ms Notbohm’s books have sold over 100,000 copies worldwide and are published in eight languages. Book excerpts and foreign language translations of some articles are available on Ms Notbohm’s website at
Ms Notbohm writes and speaks from her experiences as the mother of children with autism and ADHD. She is a columnist for Autism Asperger’s Digest and Children’s Voice and is a frequent contributor to publications and websites worldwide. This fall, she will serve on the selection committee evaluating applications for residencies at Soapstone writer’s retreat for women in Oregon’s Coast Range mountains, where she has twice been awarded residencies.
The publisher of all Ms Notbohm’s books is Future Horizons, the world leader of conferences and publications on autism and Asperger’s Syndrome.
# # #
For interviews, photos, book excerpts, speaking engagements:
Ellen Notbohm
(503) 452-7801
For editors requesting review copies:
Kelly Gilpin
Editorial Director
Future Horizons, Inc.
For foreign translations:
Jennifer Gilpin
Vice President
Future Horizons, Inc.
We take your privacy very seriously, and do not share our mailing list addresses or information with any other entity or business.
©2008 Ellen Notbohm | Third Variation Strategies, LLC

From a Listmate

Tammy Starr has provided this update on the filming for both 20/20 and W5

I now have the air dates for 20/20 and W5 for our daughter Carly's story.

W5 is March 22

20/20 is March 28

Yesterday, my husband and I and our speech pathologist were interviewed.. There were questions from 20/20 and CTV --in order to minimize the chaos, there is one crew and both networks are sharing all footage with each other. Based on the questions I was asked from each network, and given what I know from my discussions with CTV for the W5 segment, it is clear that 20/20 is going more for the tears/emotion/magical moment -sorry there is no magice here... and CTV is going more for the science (thank goodnes). The W5 questions really "pushed my buttons" and so I like my answers for them way more than my answers for 20/20...

Both segments will have interviews with Dr. Nicole Walton Allen, our clinical supervisor/ psychologist. I was clear with 20/20 that a segment without her in it will severely weaken the credibility of the story.

W5 will also be filming other kids besides Carly and will be very ABA focussed in addition to telling more of Carly's story. I have been pushing them hard to put her in context of what is happening "out there". I have been sending them all the correspondences on the benchmarks panel as well as all kinds of other information. Avis Favaro is the medical reporter and she has covered lots of autism news in the past... I get the sense that they want this piece to ask more questions than it answers and I know they are VERY interested in making this a national story since W5 is on the national network.. They are very keen on what FEAT BC is doing vis a vis getting treatment covered under medicare and am sure there will be more to this story than what will be aired on March 22.

I have done my best to let them know that what is happening to thousands of families --no treatment, nothing in school, resources are tapped both financially and emotionally-, who have no voice, no access, etc.--that story is way more important than Carly's ( the reason why I even approached Avis in the first place was not to show the world what Carly was doing but that I was concerned about what she was telling us and since I had just finished reading a very compelling article in the New York Times Magazine called, What are Autistic Girls Made Of? -- I wanted Avis to help me learn more about girls because I was worried about her self esteem and risk of depression and it has morphed into all this!!)

So stay tuned.....

From a listmate

Geneva Centre Conference

Autism 2008 - Geneva Centre for Autism International Symposium
October 22, 23, 24, 2008
Metro Toronto Convention Centre
Toronto, Canada
Registration for Autism 2008 - Geneva Centre for Autism International Symposium is available
on-line now
Go Green and help us help the environment.
Register on-line and automatically enter our monthly draw to win
"one free day"
at Autism 2008.

Visit for registration and program information

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Google alert

Newcomer blossoms despite autism

Grigori Drobot, 19, won an adult ESL spelling contest. He has an excellent memory for subjects, such as spelling.
Diagnosed after moving to Canada a year ago, teen is learning English and defying stereotypes
March 10, 2008
Alessandra Cayley

Watching Grigori Drobot among his English-as-a-second-language classmates, the only thing one can be certain of is that he is happy. He is the opposite of what people with his condition are expected to be: antisocial and egocentric.
Drobot, 19, a newcomer from Belarus, has a mild level of autism, says his doctor, Helen Chekna.
But that didn't stop him from winning the 2007 adult ESL spelling contest in Toronto last year, defeating 30 other contestants and his own anxiety.
His disability was not diagnosed until his family immigrated to Canada a year ago. Physicians in Belarus couldn't explain to his father why his son was different from others. "The doctors told me that he would be better when he grows up," recalls Konstantin Drobot.
His disorder is part of a larger spectrum of neuro-developmental disabilities that also include Asperger syndrome, atypical autism and disintegrative disorder.
Commonly referred to as Autism Spectrum Disorders or Pervasive Developmental Disorder, the conditions typically appear during the first three years of life. It's estimated that one in every 165 children under 19 is affected by Pervasive Developmental Disorder worldwide. In Canada, about 48,000 young people might suffer from it today.
Margaret Spoelstra, executive director of Autism Ontario, says the disorders can create communication, behavioural and social difficulties. However, she emphasizes, "each individual is unique and there is no single profile of (Pervasive Developmental Disorder) that fits everyone."
There is no cure but early diagnosis and treatment can improve the quality of life for individuals and their families.
Until the move to Canada, Drobot lived his life like any other Belarussian child, attending regular schools.
In his favour, he has an exceptional memory for certain subjects, such as spelling. Called rote memory, it's an unusual skill in people with a Pervasive Developmental Disorder, occurring in a small percentage of cases. "Certain math calculations, sight-reading, photographic recall of pictures or DVDs are all examples of good rote memory," explains Spoelstra.
Drobot learned of the spelling contest through his ESL teacher, Edda Mindreau, one of his strongest supporters and fans.
The two met last September, when Drobot's father, maintaining the belief his son is better off in a regular school, enrolled Drobot in her class, held in the basement of a church at Yonge St. and Sheppard Ave.
She wasn't told of his mental impairment until later. "His father just told me that 'sometimes he doesn't pay attention,'" recalls Mindreau.
Having had previous contact with autistic children, the teacher knew they are characterized as being antisocial and egocentric. But she guarantees that doesn't apply to Drobot. "I think his nature is of a friendly, kind human being.
"He has a good taste for arts, is very polite. He thinks about others, although, sometimes, he interrupts his friends in class when he wants to participate," she says and smiles, glancing fondly at her pupil.
His sharp memory would surprise his teacher again during a field trip to Roy Thomson Hall, the subway ride being the favourite part of the adventure for Drobot.
As soon as the Orpheus Toronto Choir started to perform the Robert Burns poem "My Heart's in the Highlands," Drobot recognized it and started to sing along.
He recited it again during an interview, explaining that he learned it three years ago in Belarus, and still knows it by heart, despite the fact that English is not his first language and the piece is relatively complex.
Drobot also likes geography and music: pop classics like "Money, Money, Money" by ABBA, "Hey Jude" by the Beatles and modern hits such as "You're Beautiful" by James Blunt – but "most of all, ABBA," he emphasizes.
He helps his mother with the house and babysits his 2-year-old brother.
For the future, Drobot wants to be a landscaper, because he likes flowers.
When asked who his best friend is, he replies "my cousin Oxana."
But Mindreau also might hold that position. Throughout two interviews, his eyes constantly looked for hers, seeking guidance.
It was also her eyes that he looked for during the toughest times at the spelling bee. The connection is as visible as her fondness for him.
Mindreau credits Drobot's parents for his sweet personality. She also quotes the humanist Jean Vanier: "To be human is to be bonded together, each with our own weaknesses and strengths, because we need each other."
She adds, "We learned a lot from him. . . . Grigori makes my day."
Alessandra Cayley is a Brazilian-born freelance journalist now based in Toronto.

From a listmate

Junior citizens shine
Richmond Hill
Mar 09, 2008 07:53 AM

By: Alex Ritson
Four young people from Richmond Hill and Thornhill were recognized for their contributions to the community as nominees for the Ontario Junior Citizen of the Year Awards, sponsored by the Ontario Community Newspapers Association.
Brian Lee is not your average 16-year-old. After seeing a production of Beauty and the Beast at age 5, he was introduced to the world of theatre.

Since then, Brian has aspired to bigger things and has donated his passion and expertise to fundraising events throughout the community.

Although a full-time student at Community Hebrew Academy of Toronto (Richmond Hill Campus), Brian has already found the time to become a producer, director and actor for charitable causes, his dedication helping to raise almost $100,000 for a variety of groups that assist those living with HIV/AIDS, eating disorders and autism.

When a representative of the Teresa Group (a group that helps those affected by HIV/AIDS) spoke at Brian’s school, he was eager to help and promptly organized a production entitled “That’s Dancing”.

He has since arranged a concert, “Children Will Listen,” for Giant Steps (an organization that helps those living with autism) and helped to direct and produce A Salute to Broadway for Eating Disorders of York Region, as well as put together a 12-minute training video for the University Health Network to educate volunteers on patient privacy and confidentiality expectations.

Brian’s company, Steppin’ Out Theatrical Productions, will be affiliated with the new Richmond Hill Theatre.

From a listmate

Ask Lindsay Moir:
What is a weapon at school
Friday, March 07, 2008
Our son is six years old, has Autism and is in Kindergarten. He has behavioural issues where he may hit, throw or push people or objects out of frustration, but there is no intent to injure when he does so. He has IBI and the therapists have been really helpful in the school in terms of behaviour management
The one thing they keep stressing is to look for what caused the behaviour and to work to eliminating the "trigger". The school position is that because a "weapon" is involved in some of this behaviours, they need to react strongly with progressive discipline including suspension.
How does one determine if a "weapon" is involved? What is a weapon??
When I worked on the Ministry's Violence Free Schools Initiative in the mid-1990s, we had a wonderful illustration by an OPP officer:
He picked up an imaginary gun and asked, "Is this a weapon?" We all agreed that the only use of a gun was to threaten or kill. "YES" we all agreed.
He held a kitchen knife above his head and waved it at us and asked, "Is this a weapon?" We all agreed that it was.
He took the same knife and used it to slice bread. "Is this a weapon?" We weren't so sure.......
He picked up a pen and poked it at us... "Is this weapon?" We all said "Yes!"
He took the same pen and wrote down our answer. "Is this same pen a weapon?" We all said "No.."
His point was that the most common weapon for stabbing in a school setting was a pen or pencil. We can't ban students from carrying this "weapon". What made the pen a weapon was the manner in which it was used and the INTENT of the user.
Many common objects become weapons when used with an intent that is different from its intended use. A hammer can be a useful tool when used in one way, and a deadly weapon when used in another! He suggested that the local police service can be a help when it comes to training educators how to decide what is a weapon - this is a decision that they (the police) are trained to make on a regular basis.
The "weapon" issue is a "red herring" in this case...
The real issue to me is that the principal is required by law to ensure a SAFE learning environment. SAFETY is the real issue here.
The school perceives that the only way to create a safe environment is to "remove" your son through suspension.
You and your IBI therapists, see another way - through training and behaviour management. You believe that if school staff were trained to RECOGNIZE precursors of dangerous behaviours and intervene earlier to PREVENT these unsafe behaviours that many fewer "Incidents" would occur.
The million dollar question is "How confident are you that behaviour management can indeed reduce and/or eliminate dangerous behaviours, reducing the risk of injury to staff and other students to an acceptable level (it cannot ever be totally eliminated)?"
Most school boards have behavioural professionals and workplace safety people who can help to assess the risk. IBI professionals can contribute to this decision.
The key thing here is to give the school staff another TOOL they can use to create that SAFE environment. Most educators are not just waiting to suspend a six year old - they truly believe that "there is no other way" to keep everyone safe! Your job is to help them to find that "other way".
Call a meeting and share these thoughts - "the FIRST step in solving a problem is to clearly IDENTIFY the real problem."
Lindsay Moir retired from the Ministry of Education in 1997 and has been assisting agencies, associations and parents in obtaining appropriate special education services for exceptional pupils.
Family Net welcomes your questions about special education in Ontario.
E-mail Lindsay at He will answer as many questions as possible.
From a listmate

Mar 07, 2008 04:30 AM
Re:Jobs of classroom helpers at risk
March 5
As an elementary teacher with the Toronto District School Board and a parent of children with special needs who have attended Toronto public schools, I am yet again appalled to hear that the board is debating further cuts to education assistants. The board says that none of the assistants who help special-needs students would be affected.
That is simply not true. With the exception of a very small minority, all students with special needs have been integrated into the regular classroom for more than a decade. This is a direct result of changes to the Education Act in the 1990s.
The vast majority of special-needs students are in regular classrooms and get their support from an already drastically cut number of education assistants. When we cut our education assistants, we are hurting our neediest students.
Officials need to advocate for these students and let the government know that Ontario's education funding is inadequate to carry out the Education Act's mandate.
Joanne Clarke, Toronto

From a listmate



By Jenny McCarthy

I’m asking all parents and autism groups to join me in demanding Julie Gerberding’s immediate resignation as Director of the CDC.

On Monday, March 10th, beginning at 9:00am Eastern Standard Time, let’s all start calling the White House and ask President Bush & Laura Bush to demand Julie Gerberding’s resignation for incompetence during the autism epidemic. The White House switchboard can be reached at:


Also, on the same day, please call your local Congressperson and Senators from your state and ask them to call for her resignation, too.

Julie Gerberding has led the CDC for 6 years during a time when the autism epidemic has only gotten worse. Despite tens of thousands of children who declined just like Hannah Poling, Ms. Gerberding stood before cameras yesterday defiant, cold, and defensive. Where is her humanity in the face of such tragedy? Why couldn’t she have said, “We at CDC want to make sure what happened to Hannah doesn’t happen to any other children, we want to make vaccines safe”?

Rather than listen to the heartbreaking stories of so many parents, you can be sure that Ms. Gerberding is spending her time right now trying to get the Spin Machine up and running to minimize, confuse, and deceive the American public.

The autism epidemic won’t end until we fix the vaccine schedule by reducing total vaccines, separating shots, waiting until our kids are older to begin shots, greening our vaccines, and screening for at-risk kids. Ms Gerberding has stood by and watched self-interested parties more than triple our vaccine schedule and I’m certain her inactivity to help our kids will continue.

The chances of Ms. Gerberding taking the radical steps to reform the CDC and reform our vaccine schedule to make it kid-safe are zero! We need a new CDC Director who is an open-minded reformer and who recognizes that we are experiencing an epidemic of autism, which Ms. Gerberding has never publicly admitted.

Please, parents and national autism organizations, let’s all help make our voices heard on Monday.

Thank you,

Jenny McCarthy

Jenny McCarthy is an actress, author and autism advocate.

http://www.ageofaut 03/jenny- mccarth-1. html

A book worth reading

The Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism (Hardcover)
by Temple Grandin (Author), Sean Barron (Author) "When I was a child I was a big fan of Superman and The Lone Ranger..." (more)

RDSP Information

Many families have contacted us about what we may have learned concerning the progress of various investment products being introduced to accommodate the new legislation called the Registered Disability Savings Plan.
Although this new savings plan became law in December, it seems that it will still take several months before any of the banks, insurance companies, investment houses, etc. can offer a product for us. This is not just as simple as putting money aside for a child’s education in a Registered Education Savings Plan. The concept is similar to an RESP in that the contributor(s) cannot deduct contributions to the plan and funds, once inside the plan, will grow tax free. However, with the new RDSP, there will have to be proof provided that the individual is indeed disabled within the definition in the legislation.
I won’t go into any detail at this time about the exact provisions of the RDSP except to say that there is no limit on the annual contributions like there is with an RESP. In my presentation in early 2007 to the Senate Committee considering this proposed legislation, I tried to illustrate how the maximum contribution level of $200,000 is not adequate and I still believe that that ceiling should be raised. Many families like our own cannot afford to provide all of life’s extras for our children and grandchildren with autism AS WELL AS put money aside for their future. It will take a lump sum contribution such as one from an insurance policy or the sale of a home to get a sizable amount of funds into such a plan. If my wife and I were to be pushing up daisies next week, there would certainly be the entire amount of $200,000 available to go into a RDSP for our grandson and that investment could easily triple that amount by the time his parents were old enough to no longer be able to provide for him. And yet, how much will support workers cost in 35-40 years? And if my wife and I lived well into our 80s before popping off (another 20-25 years), the $200,000 could still come out of insurance and/or the sale of our home, but there would be little time for that maximum allowable amount of capital to grow into something bigger. I suppose for our grandson’s sake, we should take our leave tomorrow. No, we can’t do that. There’s too much snow shovelling to do yet.
In order to learn if anyone is working on a new product for our community, I had conversations with branch people at BMO, TD Canada Trust, RBC and Scotiabank as well as email conversations with a head office person at Scotiabank. The BMO and RBC staff said they are not aware of their banks doing anything in this market. The staff at TDCT and Scotiabank wanted to assure me that although there is still a great deal of work to do in bringing out a new product of any kind, they are working on one for us. No one was able to give me a date as to when a product may be available.
I asked contacts with two insurance companies about any progress at their head offices and have not as yet heard anything back from those people.
There is an office of Edward Jones down the street from my home and since that investment firm has offices across Canada, I talked to the representative there. He seemed to be the most up-to-date on developments in the RDSP field, telling me that he had some clients who would be considering opening one of the new accounts when a product became available. Since Edward Jones deals with a huge number of mutual fund companies, my contact said that he was aware that some of those companies are working on a suitable product to offer perhaps as soon as the summer. We will keep you posted on developments concerning this very important issue.
As an addendum, let me add that the BC Government is the first provincial government to respond to the new legislation. They have opened the door for people with disabilities and their families to use this new savings vehicle by exempting RDSPs as assets in determining eligibility for Disability Benefits. They have also exempted all income from RDSPs allowing people to use the plan in whatever way they see fit without any penalties.
As of the writing date of this article on March 8th, I am not aware of any other province following BC’s lead.
From Autism Ontario Sudbury Chapter
Dear Autism Ontario-Sudbury & District Members:

Did you know that the Realize Community Potential Program of Autism Ontario has offered our chapter one free registration for a member to attend a Social Learning Curricula conference April 17th, 18th and 19th, 2008? (see below)

The person who receives the subsidy will be responsible for bringing back the information and sharing it with all Chapter members and relevant community partners (likely at our June 2008 networking meeting). If you are a member of Autism Ontario-Sudbury & District and are interested in having your conference fees, hotel, transportation and meal allowance covered so that you can attend this social skills conference, and you are willing to share this information with your community, let us know!

Please contact us at 222-5000 ext 2685 or 523-4785 OR via e-mail: if you would like more information regarding this opportunity by March 13th, 2008. We have to have our member registered by March 14th 2008 to take advantage of the subsidy.

Best wishes,
Heather McFarlane
President, Autism Ontario-Sudbury & District

Conference Understanding your Audience: Creating and Implementing Social Learning Curricula
Autism Ontario – Realize Community Potential Program (RCP) in partnership with York Central Hospital – Behaviour Management Services of York and Simcoe invites all chapters to attend the social programming conference, “Understanding Your Audience” on April 17, 18, 19, 2008 at the Delta Markham. Information and Registration form are attached or can be found at Register quickly! Spots will fill fast.

Tip: One spot is being made available to each Chapter. Contact your Chapter President for more details.

More from Autism Ontario
Quick Updates from your local chapter, Autism Ontario-Sudbury & District:

Mark your calendars for our upcoming workshops! Autism Ontario-Sudbury & district is pleased to host Penny Gill and her associate Rachael in Sudbury on May 10, 2008. Penny and Rachael will discuss social skill and facilitating friendships and opportunities for those on the Autism spectrum (from childhood to adulthood). Chanda and I had the opportunity to hear this talk last June, and we came away inspired with some very practical ideas!

On Saturday September 27, 2008 Ed Mahoney will present his renowned & inspiring talk, "Positive Behaviour Interventions". Ideas presented in this workshop can be applied to managing behaviour challenges arising across the lifespan for individuals on the Autism Spectrum. We've heard fantastic reviews of Ed's workshops and presentation style and we are delighted that he is coming to Sudbury in the fall.

More specific information regarding the content, registration and location for both talks will be provided shortly.

Many of you have asked about attending "regular" meetings through our chapter to connect, or to volunteer your time and expertise. In response to this request, we've decided to pilot a walking group on the last Monday of each month during our Chapter Leadership Council's regular meeting time which is from 11am-12pm. We'll meet in the parking lot at Child Care Resources, 662 Falconbridge Road (where we usually meet on Mondays), and get started around 11:10, walk around the neighbourhood and return for a quick water break 11:50-12:00! Of course all are welcome to come and connect and enjoy some fresh air. The first walking meeting will be held Monday April 28th 2008. We hope to see you there!

We would also welcome any interested members/friends to drop in during our weekly Monday meetings. Child Care Resources has generously donated meeting space for our team to meet from 11am-12pm on Mondays (excluding holidays). Come see what we're planning, drop in with your ideas or questions or just come for a visit. Bring your lunch!

Finally, we have tentatively scheduled our annual June social meeting for Friday June 20th (evening)...plan to come socialize, eat and relax! Details to follow as we confirm our location and childcare.

Best wishes,

Heather, Chanda, Rebecca and Liz
Autism Ontario-Sudbury & District Leadership Council

Giving back to Autism Ontario
Making the decision to share some of your time or talents with your local Chapter can be very fruitful. Each of our Chapters has recently received some training on how to break down the work that they do into little bites that can be taken on within the time commitments that you identify. And you don’t have to be a member to volunteer with us – some of our most committed volunteers have no personal ties to autism or Aspergers.
If you are looking for a way to brush up your computer skills, make connections in the community, or add a line to your resume, consider offering your local Chapter some of your time. (For stay-at-home parents, this is the perfect opportunity to converse with another adult!!) Opportunities exist that can be undertaken from home, at your leisure, or within a team setting. Your help makes our Chapters better able to create opportunities and acceptance for individuals with Autism Spectrum Disorder in your community.
Contact your local Chapter for more information. Contact information for our Chapters can be found at
Ombudsman Ontario
NDP MPP Andrea Horwath has been instrumental in assisting me with approaching the Ombudsman of Ontario with my request that he investigate the current autism situation in our province. I'm very happy to share with all of you that he has agreed to follow-up and contact me for additional information.
At this time, I ask that families email me with answers to the following three questions below so that I am able to communicate to the Ombudsman the crisis the children are in so that he continues his interest in the investigation.

Taline Sagharian

1) Is your child on the IBI waitlist and if so, how long?
2) Is your child having to receive IBI outside of school?
3) Has your child been discharged from IBI and why?

Ko-Ach Adventures - Imagine Yourself Unstoppable
Ko-Ach Adventures is a therapeutic adventure program aimed at providing meaningful summer programming for youth and young adults aged 13-35 with a mild to moderate developmental disability, Autistic Spectrum Disorder and Aspergers Syndrome. We at Ko-Ach Adventures recognize the immense potential of our participants to learn from new experiences and, if given the chance, to discover hidden strengths and abilities that neither they nor their caregivers knew existed. Led by an experienced and trained staff team, and dedicating 1-1 participant-staff ratio, a Ko-Ach Adventure provides participants with a meaningful, week long canoe-trip experience. Participants will get to sleep under the stars, cook food over an open fire, swim, paddle, tell stories, look at wildlife, and most importantly, have fun. Family programs and a scheduled 3-day family wilderness retreat are additionally available.

Ko-Ach Adventures is an excellent way to make use of Respite dollars or summer camp subsidies.

Ko-Ach Adventures has been providing innovative programming opportunities to participants for the past three summers. To learn more about Ko-Ach Adventures, visit or call Jordan Glick at 647-298-1860.
Disclaimer: It is important to do your own research and make your own informed decisions. Please note Autism Ontario does not endorse any specific therapy, product, treatment, strategy, opinions, service, or individual. We do, however, endorse your right to information.

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