October 27th – November 8, 2008
Alliance for families with autism
Visit
www.autismnewsarticles.blogspot.com
to read archived mail
Our apologies
AFA will be offline with this article mailer for at least two weeks. If you have anything of interest keep sending it. We will post after that time.
A reminder from the Don't Stand Alone Foundation in Barrie :
The Don't Stand Alone Foundation for Children with Autism invites you to attend an open house at Providence Learning Center . This is a new IBI center that has just opened in the Barrie area. This is an excellent opportunity to come , see and hear about the center, learn about their programs, ask questions about their services. Look forward to seeing you there!
Date: Sunday November 9, 2008
Time: 1:00pm- 3:00pm
Location: 92 Commerce Park Dr. , Unit 11, Barrie (near the Cineplex theatre)
Rsvp: Tel. # 721-8607 or 797-0608 or by email at donnacurrie1@ rogers.com
Google alert
Autism Ontario-Durham Region's celebrates Christmas
Nov 03, 2008 - 04:00 PM
DURHAM -- Celebrate Christmas with your family.
Autism Ontario-Durham Region is having a Family Christmas Party on Nov. 16 from 11 a.m. to 2 p.m. at Heydenshore Pavilion, 589 Water St. , Whitby .
Admission if free for full members of Autism Ontario-Durham Region and their immediate family, plus one support worker.
The cost for anyone else is $8 per person at the door. There is no debit or Amex.
Admission includes one free raffle ticket, pizza, dessert and a drink, crafts, activities, quiet room and a gift from Santa (kids only), professional juggler, visit from Santa Claus and a professional photo with Santa.
Maximum attendance is 325.
For more information or to register, visit www.autismontario.com/durham.
Google alert
United Way Swim
November 7, 2008
SIX HARDY SOULS TOOK A "REFRESHING" SWIM IN LAKE ONTARIO THIS AFTERNOON ... PARTLY FOR THE FUN OF IT, BUT MAINLY TO HELP THE KINGSTON-AREA UNITED WAY.
THE SWIMMERS WERE BLESSED WITH SUNNY SKIES AND CALM CONDITIONS.
BUT AS NEWSWATCH'S CHRIS HARVEY EXPLAINS, THEY DIDN'T STAY IN THE COOL WATER FOR VERY LONG.
SIX SWIMMERS GOT OFF TO A ROCKY START, STUMBLING INTO THE WATER ON THE SLIPPERY ROCKS ALONG THE SHORELINE AT FORT HENRY .
THEIR GOAL...TO SWIM ACROSS NAVY BAY TO THE DOCK AT RMC.
PROBABLY THE FASTEST 10 MINUTE SWIM OF THEIR LIVES.
BHAVANA VARMA:
"THEY'RE CRAZY. BUT WE APPRECIATE THEIR DOING THIS.
IT'S WONDERFUL THAT PEOPLE DO THESE CRAZY THINGS FOR US."
THE PRESIDENT OF THE UNITED WAY IN KINGSTON SAYS THE FUNDRAISING CAMPAIGN COUNTS ON DEDICATED PEOPLE LIKE THIS TO REACH ITS GOAL.
BHAVANA VARMA:
"WE'RE THREE QUARTERS OF THE WAY, 2.1 MILLION DOLLARS.
SO WE ARE 75 PERCENT OF THE WAY THREE WEEKS TO GO."
JAY SERDULA WHO HAS ASPERGERS SYNDROME, A RARE FORM OF AUTISM, SPEARHEADED THE POLAR SWIM.
HE'S NO STRANGER TO KINGSTONIANS, HAVING COMPLETED A GRUELING 41 HOUR SWIM ACROSS LAKE ONTARIO IN AUGUST.
AS A WARM-UP FOR THE SWIM SERDULA JOGGED FROM RMC TO THE POINT AT FORT HENRY WHERE THE NOON-HOUR SWIM BEGAN.
CHRIS HARVEY:
"THE WATER WASN'T EXACTLY SWIMMING POOL WARM.
IT WAS A BALMY 58 DEGREES AT SWIM TIME.
AND FOR THAT REASON, BOATS ACCOMPANIED THE SWIMMERS."
THE MILITARY SWIMMING RECRUITS STARTED AS A GROUP, LED BY SERDULA, AND WERE AT THE HALF WAY POINT WHEN ONE SWIMMER ASKED TO BE PULLED FROM THE FRIGID WATER.
AFTER A BRIEF BREATHER, SHE GOT BACK IN AND COMPLETED THE CROSSING.
CAPTAIN JENNIFER HUTTER:
"AND WHAT I FOUND WAS THAT MY BREATHING REALLY SUFFERED.
ABOUT HALF WAY OVER I STARTED ACTUALLY SEEING A LITTLE BLACK.
SO I ASKED THEM TO PULL ME OUT FOR A SECOND SO I COULD GET ENOUGH AIR TO KEEP GOING."
"YOU MADE IT THOUGH"
"UP..IT'S COLD."
THE QUESTION...WHY ON EARTH WOULD YOU DO THIS.?
JAY SERDULA:
"WELL PARTLY FOR THE THRILL OF SWIMMING IN COLD WATER.
PARTLY TO HELP THE UNITED WAY.
I CAN HANDLE THE COLD WATER SO ,MIGHT AS WELL MAKE AN EVENT OUT OF IT.
THEY THINK IT'S GOING TO BE FUN TO WATCH SO THEY COME OUT AND WATCH IT AND GIVE MONEY TO THE UNITED WAY WHEN THEY MIGHT NOT OTHERWISE."
MAJOR ADRIAN ERKELANS:
"HOW WAS THE SWIM.?"
"COLD. THREE OF US WERE NOT VERY GOOD SWIMMERS AND IT TOOK A BIT LONGER THAN WE THOUGHT IT WOULD TAKE.
BUT IT WAS INTERESTING. YOU'VE GOT TO TRY A NEW EXPERIENCE EVERY SO OFTEN AND THAT WAS A NEW ONE."
THE REWARD AT THE END OF THE SWIM, A ROUND OF APPLAUSE, A WARM BLANKET, AND A HOT CHOCOLATE, AND THE KNOWLEDGE THEIR ACTIONS WILL HELP THOSE IN NEED.
CHRIS HARVEY, CKWS NEWSWATCH, KINGSTON .
TODAY'S POLAR BEAR SWIM RAISED 270-DOLLARS TOWARDS THE UNITED WAY'S GOAL OF 2.8 MILION DOLLARS.
Visit
http://iloveachildwithautism.com/index.html
Christmas Ornaments are back!
On-Line Conferening
www.awares.org/conferences
Autism2008 - the latest Awares International Online Autism Conference - opens on November 24, 2008 and lasts for a whole week. Last year's conference attracted thousands of delegates from around the world and Professor Simon Baron-Cohen called it "the best online autism conference on the planet."
As in previous years, Autism2008 is a unique opportunity to put your questions directly to people with autism and international autism professionals. This year's outstanding list of more than seventy speakers includes: Professor Simon Baron-Cohen (UK), Dr Gary Mesibov (USA), Dr Ami Klin (USA), Donna Williams (Australia), Dr Susan Folstein (USA), Merry Barua (India), Dr John Constantino (USA), Dr Carol Gray (USA), Dr David Skuse (UK), Dr Pamela Heaton (UK), Dr Glenys Jones (Wales), Dr Dawn Wimpory (Wales), Dr Wendy Keay-Bright (Wales), Stephen Shore (USA) Dr Roberto Canitano (Italy), Dr Manuel Casanova (USA), Dr Susanne Bejerot (Sweden), Chantal Sicile-Kira (USA), Dr Darold Treffert (USA), Dr Mayada Elsabagh (UK), Dr Sven Boelte (Germany), Nuala and Dale Gardiner (UK), Dr Robert DeLong (USA), Dr Dirk Dhossche (USA), Dennis Debbaudt (USA), Dr Cheryl Dissanayake (Australia), and Dr Amanda Ludlow (UK).
Topics will range from the genetics, neurology and immunology of autism, biomedical approaches, environmental issues, educational methods, autism in adolescents and adults and first-hand experiences of living with autism and Asperger's syndrome.
Autism2008 is open to absolutely anyone with an interest in autism.
To find out more about Autism2008 and receive e-mail updates with all the latest conference news, please take a moment to register now at www.awares.org/conferences and make a note in your diary to join us on November 24, 2008. Please also let anyone else know who might be interested.
Abstracts of speakers' papers will be available online at www.awares.org/conferences from November 17, 2008, and the full papers from November 21.
An online Foyer Café will also be available for delegates to meet and discuss issues prior to the conference.
Autism2008 - the Awares International Online Autism Conference - is organised by Autism Cymru, Wales' National Charity for Autism
Just a reminder that you can register right now for Autism2008 at www.awares.org/conferences
For further information, feel free to e-mail me at adam@autismcymru.org
Best wishes,
Adam Feinstein
________________________________________
AWARES Conference Centre
http://www.awares.org/conferences
From the Autism Tree
You can read more on Autism Tree here:
http://clicks.aweber.com/y/ct/?l=8QDCa&m=1eI_H7ZtM.1D59&b=46FLvzgJ3c.FouOlwTvyQw
Also added to AT this month is the interesting results from a study
done that shows autistic people make more rational choices, plus
another treatment review from the biomedical standpoint - this time
focusing on vitamin B9.
So, if you would like to find out more about how Autism Tree can
help you and your family, copy and paste the following link into
your browser:
http://clicks.aweber.com/y/ct/?l=8QDCa&m=1eI_H7ZtM.1D59&b=46FLvzgJ3c.FouOlwTvyQw
Here's a quick summary of all the entries made to Autism Tree this
week:
Study Shows That Autistic People Make More Rational Choices
------------------------------------------------------------------------------------------
A recent Wellcome Trust funded research study revealed an
interesting positive result from an autism investigation. The
study showed that people with autism spectrum disorders are less
likely to make irrational decisions than people not on the Spectrum
do.
It illustrated that autistic people are less likely to be swayed by
intuition or emotions and are...
Enjoying Thanksgiving
--------------------------------------
As Thanksgiving approaches, you might be looking for some ideas
that will allow your autistic child to join in on the fun of the
holiday. The key to making sure that this celebration goes
smoothly is proper preparation. Some of the following ideas will
help prepare your family enjoy a pleasant time together:
- Cater to...
Vitamin B9 A Bio Medical Approach
-------------------------------------------------
Vitamin B9, also referred to as folate, is a nutrient that is
essential to the healthy functioning of the brain. Folic acid is a
synthetic derivative of Vitamin B9 and can be found in nutritional
supplements and fortified foods. Another derivative product of
vitamin B9 is folinic acid, which is a form that is more...
VIDEO: Flash Cards
--------------------------
An Australian comedian who has a child with autism talks about how
he uses flash cards to communication better.
To become part of the Autism Tree community and receive all the
latest information, practical tips and advice please copy and paste
the following link into your browser.
http://clicks.aweber.com/y/ct/?l=8QDCa&m=1eI_H7ZtM.1D59&b=46FLvzgJ3c.FouOlwTvyQw
Have a great weekend.
Kind regards
Rachel Evans
Google alert
Theaters to offer sensory-friendly film screenings for those affected by autism
08:37 PM PST on Thursday, November 6, 2008
By JENNIFER DEAN
The Press-Enterprise
The Autism Society of America and AMC Theaters are helping people with disabilities do something many people take for granted -- enjoy a good movie.
Sensory-friendly films will offer families affected by autism or other disabilities a special showing of " Madagascar 2" Saturday at AMC Ontario Mills 30 and several other Southern California AMC theaters.
Showings of "Bolt," "Marley & Me" and "Hotel for Dogs" are also scheduled for special viewings over the next three months.
"The idea is to create an accepting and safe environment for these families," said Carin Yavorcik, media associate for ASA. "This is something normal for other families, but can be a big challenge to families with disabilities."
Because autism often comes with sensory challenges such as a hypersensitivity to light or sound, the theaters will lower the sound and raise lights during sensory-friendly films showings. And, there will be no previews or advertisements shown before the movie.
Audience members can also get up and walk, move around, even dance if they want to, said Melanie Bell, vice president of corporate communications at AMC Theaters. And, movie goers can bring their own snacks and drinks to accommodate special diets.
The idea for the program came about last November in the form of a request for a special showing from a parent of an autistic child. Her request prompted the first Sensory Friendly film in a Columbia , Md. , AMC Theater and the response was huge.
"Over 300 people attended that first viewing," Bell said. "Less than a year later, in August, 2008, we expanded the Sensory Friendly Films to 11 theaters in 10 markets.
"I think it's pretty incredible. For many people, this is a first in their life and hopefully it's making a difference."
Reach Jennifer Dean at 951-368-9336 or jdean@PE.com
Special Movies, special needs
Where: Ontario Mills 30, 4549 Mills Circle , Ontario
When: 10 a.m. Saturday
Cost: $6
Information: www.autism-society.org (full list of participating AMC Theaters)
Upcoming Films
Nov. 8: " Madagascar 2"
Dec. 6: "Bolt"
Jan. 3: "Marley & Me"
Jan. 31: "Hotel for Dogs"
From a listmate
ABC News Launches an amazing Online Autism Resource
http://abcnews.go.com/health/autism.
***********************************************************
"60 Minutes" to Feature Musician with Autism
Thursday, November 6, 2008
By: Carin Yavorcik
CBS show tells story of hope
CBS’s 60 Minutes will feature the story of Rex Lewis, a young musician with autism, on November 16.
Rex, 12, is also blind. His mother Cathleen began to notice when her son was young how Rex responded to music, notably classical music. When he listened to classical composers, there was a look on his face that seemed to say, “This I understand.” When Rex turned two, his father gave him a 48-key piano keyboard. At first, the sensation of touching the keys was unpleasant for Rex, but once he heard the notes the magic had been unleashed.
Soon, Rex would play back melodies that, for most, would take months to learn. He had perfect pitch and a phenomenal memory. It was clear that Rex was a musical savant - one of maybe 20 in the world.
Today, Rex swims, bikes, skis, loves to travel and plays some of the most incredible music in the world. “To me,” says Lewis, “my son’s life, his story and his song are about hope. My son knows that it is a wonderful life! And through my faith and my love for a little boy, so do I.”
Cathleen chronicles their story in Rex: A Mother, Her Autistic Child, and the Music That Transformed Their Lives. The two will appear on 60 Minutes November 16; check your local listings for times.
-information from the Autism Society of America
Life is a gift...live each day as a thank-you...to the universe and to God
-Author Unknown
From Racheal
If you've not heard of him, Dr Bernard Rimland was the founder
of the Autism Research Institute; he sadly passed away towards
the end of 2006.
Dr Rimland made the decision to dedicate his life to improving
understanding about autism and also the lives of those with the
condition after his son was diagnosed with autism in the 1950's.
And he then went on to found the pioneering Defeat Autism Now!
(DAN!) programme.
So what is it that Dr Rimland recommended...?
Well, it's nutrients and one in particular - DMG.
You are unlikely to find any large studies on this particular
natural compound in relation to autism, as there are no
restrictions on manufacturing.
So, this means that the big pharmaceutical companies are unwilling
to spend the $'s needed on product trials as there would be no
profit in it for them.
But, there have been studies carried out in which large volumes of
DMG were given to non-autistic people and animals with no adverse
side effect being noted.
So, what are the benefits for autism..?
Parents who have given their children DMG have reported marked
improvements in both speech and behavior.
DMG taken along with Folic Acid, Betaine, Vitamin B6 and Magnesium
work to level out behavior patterns, allow individuals to cope with
stress and help the immune system to work efficiently.
Here is a quote from Dr Rimland about DMG, taken from the Autism
Research Institute website
*********************************
Dimethylglycine (DMG) for Autism
"Many parents have reported that, within a few days of starting
DMG, the child's behavior improved noticeably, better eye contact
was seen, frustration tolerance increased, the child's speech
improved, or more interest and ability in speaking was observed."
Bernard Rimland, Ph.D.
Autism Research Institute
4182 Adams Avenue
San Diego, CA 92116
*********************************
For more information on how using natural dietary supplements could
make a difference in your child's life please copy and paste the
following url into your browswer:
(At the moment there's a special deal running with 20% of the list
price. Although I am not sure how long it is going to last.)
http://clicks.aweber.com/y/ct/?l=8QDCa&m=1pXGghSkdU1D59&b=o7DeJJn5HARFNjboPxyQyg
Until next time.
Best wishes
Rachel Evans
The Essential Guide To Autism Catalog (Use This Link)
http://www.essential-guide-to-autism.com/autism_catalogue.html
P.S: Put the link below into your browser to benefit from the
current special discount offers on autism dietary supplements:
http://clicks.aweber.com/y/ct/?l=8QDCa&m=1pXGghSkdU1D59&b=o7DeJJn5HARFNjboPxyQyg
From Taline
Here is a string of comments now posted online with the Henderson article. You can login in to add yours through here: http://www.thestar.com/article/526268
Taline
------------------------------------------------
Where's the Money (2)?
Some time ago Premier McGuilty signed a letter proudly claiming that his "Government" budgets $60,000.00 for each child with special needs in the school system. I certainly don't see my Board spending $60k on my child. The question remains, where does the money go? Also, there is lots of money to protect the obscenely bloated super profits of the banks and auto companies, but nothing for the people.
Posted By Publius72 at 10:49 AM Tuesday, November 04 2008
Accountability and Transparency Needed
Like the commentator below I would also like to know exactly how school boards and other agencies spend special education funds. The Toronto District School Board has enough money to provide every student with day planners (cost = $800,000), keep swimming pools open (cost = $4 million), but can't afford to provide enough education assistants to support spec. ed. kids. Does anyone believe this?
Posted By Lillie Papps at 7:15 AM Tuesday, November 04 2008
Where is the money?
As the parent of an autistic 8 year old who has been fighting the "system" for almost 7 years, I have some real issues with Minister Matthews optimistic claims. For one thing, the McGuinty Government has talked for years about expanding supports for kids with autism and improving the capacity of the education system. I certainly haven't seen much by way of results. What exactly has been done? The amount of money mentioned by the Minister is impressive, but as parents, we certainly don't see it. Most of it, I suspect, goes to pay bureaucrats sitting in offices and attending meetings rather than providing services. As a final point, the Government's "benchmarks" are nothing more than a thinly-disguised scheme to cut kids off from treatment. Shame on the McGuilty Government!!
Posted By Publius72 at 9:30 AM Monday, November 03 2008
autism and VOC's
More research and information is required on how VOC's from everyday products and materials are contributing to autism, and autistic behaviours. As an adult with multiple chemical sensitivities (MCS/ES), I learned that many of the brain reactions I experience after exposures are considered to be on the spectrum. Some take days to clear up. Karen Slimak and Dr. Scott Faber have and are researching the connection. see: http://www.post-gazette.com/pg/08132/880873-52.stm
Posted By clean air at 6:34 PM Saturday, November 01 2008
From google alert
Saginaw Township , Michigan , mom opening autism center
by Jill Armentrout | The Saginaw News
Saturday November 01, 2008, 1:46 AM
Becky L. Good of Saginaw Township became an advocate for autism treatment after learning that her son, Connor, 8, has the brain disorder.
Good founded Connor's Autism Project in 2006 to help fund autism education in Saginaw Township Community Schools.
Monday, her nonprofit effort will open an autism resource center in leased space inside Mid-Michigan Foot & Ankle Center at 4224 State to help other parents sort through treatment options for their children.
"Our goal is to have available information on every issue we can think of, so parents are exposed to all sides of resources and can make the most informed decisions," Good said.
One out of every 166 children nationwide has some form of autism, estimates the federal Centers for Disease Control and Prevention in Atlanta . That's up from a rate of 3.4 children per 1,000 in 1996. Researchers don't know why the number has risen or exactly what causes the disorder.
The autism center will feature a lending library with print and video resources, magazines and free Web access.
Good and Jamie Lewis of Saginaw Township -- whose son, Braden, 8, also has autism -- will serve as resources, as parents who have faced the disorder.
"A diagnosis is scary," Good said. "We want to share our experiences. We desperately needed something like this center, but there was nothing. We were on our own, gathering information.
"It's important for parents to feel empowered to make decisions.
Good and Patrick Riffel, another parent of a child with autism, lead the project's volunteer board. Other members include Dr. Robert Thill, a pediatrician with Children's Medical Group in Saginaw Township; Louanne Neiderquill, director of special services with Saginaw Township schools; and Patricia Neumann, an instructional assistant for autistic children in the school district.
Thill, who sees Connor Good as a patient, said he is diagnosing more children with the disorder and screens toddlers for symptoms.
"We know that early treatment with behavioral therapy helps the most," he said. "A lot of what is out there is just opinions and hearsay. We need to use evidence-based medicine.
"Treating this is new for many doctors and insurance companies. People don't know who to talk to. This center can be a place for emotional support. It's a good start for this area."
Organizers of the center sent a community needs survey to 400 Saginaw County families of children with autism to determine what services the center should offer, Good said. She and Lewis used their research, along with input from the board, to sort out the information.
They are writing proposals to apply for grants to expand the center library and have a long-term goal of bringing therapists and doctors to Saginaw County to add services here, Good said.
"We want to act as a catalyst to go into the community and work with pediatricians and all the schools. Our mission is to make people more aware of autism and more accepting," she said.
Students and staff at Saginaw Township Community Schools received a 2008 Michigan 's Best award from the Michigan Association of School Boards for their work mentoring and teaching autistic children. Arrowwood Elementary School , 5410 Seidel, also has built a sensory room with lights and sounds to stimulate these students. Good helped spearhead that project.
Message from Sudbury
The Rainbow District School Board is considering partnering with The City of Greater Sudbury to discuss Leisure Programs within the city for special needs.. more as it comes.
*******8
From Nancy ’s List..
Attached to this mailing is infofmation and registration forms for the Independent Planning and Facilitation Symposium on Dec. 2nd.
------------------------
From a listmate, working on collecting some data for advocacy:
Hello everyone,
For Kinark clients, I would like to know how many hours of IBI your
child was funded for. Also, what response did you get if you requested
more hours and when were you approved and by whom?
You can email me privately at tamstarr@rogers. com and please do so by
the end of this week.
Thank you,
Tammy
----------------------
This was shared a week ago, and was to print this week in Access Now, a newspaper in Ottawa . I have held off sharing the advance copy until now:
October 23, 2008.
Autism Update
By Andrew Kavchak
A major concern of any parent of a disabled child is the question of how will their child be cared for once they become adults. With respect to individuals with autism, the situation is disturbing. The Autism Ontario organization (formerly knows as the Autism Society of Ontario) issued a report in October titled “Forgotten” about the lack of programs and supports for adults with an Autism Spectrum Disorder (ASD). To those of us with young children who suffer from autism such reports confirm our worst nightmare.
The reality is that children who are diagnosed with autism at a young age require immediate and intense intervention treatment if they are to develop to their full potential. Unfortunately, OHIP does not cover the cost of treatment and the provincial “Autism Intervention Program” run by the social services department is plagued with tremendous waiting lists and inadequate resources. Parents of youngsters thus try to cope the best they can to provide the necessary treatment. For those kids who are severely affected by autism and cannot be integrated into a classroom, the school system is also inadequate as Intensive Behaviour Intervention (IBI) is not used in the schools to team severely autistic children, even though this is the most effective means of doing so. So parents wonder…does it get any easier as our children grow up? The answer is clearly “No!”.
According to the “Forgotten” report, Ontario has a piecemeal approach to treating autistic adults that must be dramatically changed to support the estimated 50,000 affected adults. These people desperately need educational, employment and social opportunities, as well as supported living options. Parents will do what they can for their children, but eventually old age and death make it impossible to expect parents to care for their disabled children throughout their entire lives. If we are a truly civilized society, then the government must act like one, become considerably more responsible, and move on this issue.
Regrettably, the Ontario government has not indicated that it is particularly sensitive to this issue and it will likely use the current recession as an excuse for inaction or cuts. One particularly disturbing matter concerns Ontario ’s policies with respect to the new Registered Disability Savings Plan (RDSP). As many of you may recall, the federal government announced two budgets ago the creation of the RDSP. Financial institutions are supposed to make RDSPs available to the public for the first time in December, 2008. The plans will allow families to create a tax-free savings vehicles for their disabled children. The plans will allow families to contribute up to $200,000 to which the federal government may also contribute. Once the disabled person becomes an adult, they would be able to draw on these funds for living expenses. The problem is that the provinces provide disability pensions based on different criteria. In Ontario , unless the RDSP is going to be exempt from the entitlement calculation, the existence of RDSP funds may be used by the government as an excuse to reduce or completely eliminate a disabled person’s entitlement to the disability pensions. The Globe and Mail reported several months ago that so far only three provinces have moved to exempt the RDSP funds from the calculations of entitlement to a disability pension. Regrettably, Ontario is on the list of the other seven provinces that have not yet moved to fix this absurd situation and there does not appear to be any sign that the Ontario government particularly cares about this issue.
Please send a message to the Premier of Ontario and to your MPP requesting that they exempt the RDSP from the calculation of disability pension entitlements. It is only fair and reasonable that a family should be able to take measures for their disabled children to minimize the risk of being destitute in their old age.
----------------------
An event to help the fight for IBI funding for Delanie in Hamilton :
"Let's Fight For Delanie" on Monday, December 8 at 6:00pm.
Event: Let's Fight For Delanie
"in conjunction with the December meeting of the Society of the Prevention of Cruelty to Humans"
What: Fundraiser
Host: STOP THE GOV FROM CUTTING OFF FUNDING FOR DELANIE!!!!!
Start Time: Monday, December 8 at 6:00pm
End Time: Monday, December 8 at 9:00pm
Where: Hamilton Public Library (Central Branch); "Hamilton Room" - just off the main lobby
To see more details and RSVP, follow the link below:
http://www.facebook.com/n/?event.php&eid=60346206744
Thanks,
The Facebook Team
------------------------
Globe article Nov 4th, 2008
From: http://www.theglobeandmail.com/servlet/story/RTGAM.20081104.wlautism04/BNStory/lifeFamily/home
MDs grapple with McCarthy Effect
Article TRALEE PEARCE
From Tuesday's Globe and Mail
November 4, 2008 at 9:02 AM EST
A few years ago, when Vancouver autism specialist Vikram Dua faced a parent's query about a trendy alternative therapy for a child, he wasn't the best listener.
"I used to rail against it or argue with parents," he recalls of the discussions about restricted diets or the use of supplements.
The result: He tended not to see those families again. "And it didn't help the kids very much."
Now, Dr. Dua is less combative. He explains that of the more than 1,000 treatments out there, one or two might, indeed, work. He just doesn't know which ones work and for which kids.
Enlarge Image
Jenny McCarthy and Jim Carrey have campaigned to have toxins removed from vaccines. Doctors have taken notice. (PAUL MORIGI/WIREIMAGE)
Instead, Dr. Dua, a child and adolescent psychiatrist at BC Children's Hospital, asks three questions. Is the treatment safe? Will it suck time and resources from others that may help more, such as behavioural or speech and language therapy? And, in general, does it fit the parents' world view?
If the answers suggest no potential for harm, Dr. Dua says, "Go forth and propagate. And if it works, come back and tell me about it."
Call it the Jenny McCarthy Effect. The former Playboy bunny has followed up her public crusade against the vaccines she believes caused her six-year-old son's autism with a new book that details how she "beat" that autism with a restricted diet, metal detoxification and vitamins.
Ms. McCarthy's crusades aren't going unnoticed; she's made various media appearances and landed a recent cover story in US Weekly.
In response to Ms. McCarthy and other advocates, doctors who treat children with autism say, their bedside manner has had to evolve.
Autism experts have seen first-hand that parents of autistic children are particularly vulnerable to the lure of upstart remedies. While diagnoses can now be made as young as 18 months of age, there is often a long wait for expensive behavioural therapies. This leaves parents anxious to search for others.
Autism, a developmental disability known to affect brain function, resulting in difficulties with communication and social interaction, and unusual patterns of behaviour, has attracted some romantic notions, Dr. Dua says. "There is an Awakenings phenomenon," he says, referring to the 1990 movie in which Robert De Niro's character is briefly stirred out of a catatonic state. . "If only there was some way to unlock this child, unlock the mystery. There's this search for a panacea, for the one thing that's going to fix it."
Traditional medicine hasn't been able to offer parents a great deal of hope. When parents say the studies on medication aren't that strong, "it's not an unreasonable point," he says.
Darlana Mancuso, a mother living in Burnaby , B.C., has seen an increased openness in the 2½ years she's been seeking help for her son, Christian.
Their first pediatrician didn't think anything was wrong with Christian, now 5, even though he was displaying major behavioural problems. She now has a "dream team" of occupational and speech therapists, doctors and pediatricians who are willing to discuss everything from testing a few dietary changes to pulling back on his vaccinations.
"I've noticed in the last little while doctors now, I don't know what it is, they're not talking their talk any more," she says. "Some of them are saying that the milk, the gluten and the sugar - removing them is helping out."
Wendy Roberts, a developmental pediatrician who specializes in autism at Toronto's Hospital for Sick Children and at Bloorview Kids Rehab, says she's not only entertaining queries about diet and supplements, she's been inspired by these parents to start her own research on the effects of supplements such as Omega-3s, which have been shown to have some positive effects on children with attention-deficit hyperactivity disorder.
In her practice, she warns parents that she's never seen diet make a difference in a child who is not among the 20 per cent of autistic children with stomach and digestion issues. And she says the link between these issues and brain function remains unknown.
If parents do want to forge ahead, she advises a very gradual approach, with a huge amount of documentation to chart any changes. And, like most doctors in the field, Dr. Roberts says, she will also emphasize continuing with behavioural therapy.
At the other end of the spectrum, some pediatricians are known for heartily endorsing a number of alternative therapies. Chatham, Ont., pediatrician Wendy Edwards, who has experienced some success with a gluten- and dairy-free diet for her 8-year-old son, says parents considering the diet seek her out or are referred by other doctors who are open to the idea. "Doctors are starting to realize this is becoming huge and you can't just brush it off any more."
But she finds herself managing the expectations of parents thrilled to have found an ally. She is careful to tell parents that their child may not improve on the diet. And like her more conservative peers, she is a firm opponent of chelation therapy (a metal-detoxification process) and oxygen chambers.
Dr. Edwards is especially careful with the word "cure." In Ms. McCarthy's new book Mother Warriors: A Nation of Parents Healing Autism Against All Odds, Ms. McCarthy writes that her son doubled his vocabulary within two weeks of starting the gluten- and dairy-free diet and has now recovered.
"God bless Jenny McCarthy for getting us on the map," Dr. Edwards says. "But she's a little extreme sometimes."
Dr. Roberts says she shuddered recently when a grandfather called to say his grandchild no longer had autism. "For the majority of kids, if they've had real, true autistic wiring, they may go through a period where they look great and that's wonderful," she says. "But when the next developmental challenge comes and the anxiety level goes up, or the environment changes and the symptoms come back, the parents are devastated."
If and when that happens, up to 70 per cent of autistic children can also show signs of a budding psychiatric illness. Parents may choose to intensify alternative treatments instead of trying medication that can work, says Dr. Dua, a member of Canada 's Mental Health Commission.
Dr. Roberts says that even when she disagrees with an extreme approach such as the potentially deadly chelation, she will try to find a way to reduce the chance of harm.
Having stumbled upon an unlicensed physician practising the treatment, she implores parents to check credentials. She urges parents to ask the doctor to monitor the blood for minerals such as potassium that can fall to dangerously low levels. Above all, she tries not to blame parents for their easy devotion to seemingly odd choices.
"I know they're desperate, and who knows what any of us would do in that situation."
--------------------
Letter in the Globe Nov 5th, 2008:
From: Globeandmail.com
No room for guilt in autism
LAURA MACKINNON
November 5, 2008
Kingston, Ont. -- I am a family physician and mother of a moderately severe autistic 11-year-old (MDs Grapple With McCarthy Effect - Life, Nov. 4). A factor I don't see discussed is the guilt attached to therapy for autism.
Jenny McCarthy, on the cover of US Weekly, proclaiming she cured her son of autism leads vulnerable parents to the feeling that they, too, should be able to do this. The fact of the matter is that some kids get better (cured?) with therapy and some kids don't get completely better, despite any number of therapies.
Some families have been working for many more years than Ms. McCarthy, trying numerous therapies, and haven't had the results she has. And some don't have the resources, emotional, financial, intellectual or otherwise, to try every therapy.
If the therapy works, that is wonderful. If it doesn't, we need to accept the beauty and diversity autistic children and adults bring to the world.
------------------
A listmate shared from Nova Scotia , a group of articles and Hansard from the NS Legislature:
CJCH News (CTV Halifax) - Monday, November 3 2008 - 23:30 (Local) - Segment #3
CJCH
DAWN MORRIS SON SAYS HER SON BENEFITED FROM AN INTERVENTION PROGRAM AND SHE BELIEVES ALL CHILDREN WITH AUTISM SHOULD HAVE THE SAME OPPORTUNITY.
I AM SO GRATEFUL FOR THE WORK OF EIBI FOR MY FAMILY AND THE CHANGES I HAVE SEEN IN MAX. AND I WANT ALL KIDS WITH AUTISM AND ALL PARENTS TO EXPERIENCE THAT SAME HELP.
MIROISON WANTS THAT PROGRAM EXPANDED TO INCLUDE ALL CHILDREN WITH AUTISM. RIGHT NOW PRE-SCHOOL AGE KIDS ARE ELIGIBLE AND ARE SELECTED RANDOMLY. THE DIRECTOR FROM THE HEALTH DEPARTMENT SAYS IT IS ABOUT TRYING TO EN SURE ALL PARENTS HAVE EQUAL OPPORTUNITY TO ACCESS THE PROGRAM.
_______________________________
CJCH News (CTV Halifax) - Monday, November 3 2008 - 18:00 (Local) - Segment #3
CJCH
THE MOTHER OF AN AUTISTIC CHILD IS CALLING ON THE NOVA SCOTIA GOVERNMENT TO EXPAND THE INTERVENTION PROGRAM FOR AUTISM. SHE SAYS HER SON BENEFITED FROM TAKING PART AND SHE BELIEVES ALL CHILDREN WITH AUTISM SHOULD HAVE THE SAME OPPORTUNITY .
Reporter: MORRISON CAN'T BELIEVE HOW FAR MAX HAS COME IN THE LAST SEVEN YEARS. MAX HAS AUTISM.
THERE WAS A LOT OF MELTDOWNS A LOT OF FRUSTRATIONS.
NOW MAX IS SOCIALIZING AND GOING TO SCHOOL. AND SHE SAYS IT WOULD NOT HAVE HAPPENED WITHOUT THE EIBI PROGRAM FOR EARLY BEHAVIOURAL INTERVENTION. DESIGNED TO HELP WITH SOCIAL AND COMMUNICATION SKILLS. MAX WAS ENROLLED TWO YEARS AGO BEFORE HE STARTED SCHOOL.
I AM SO GRATEFUL FOR THE WORK OF EIBI FOR MY FAMILY AND THE CHANGES I HAVE SEEN IN MAX. AND I WANT ALL KIDS WITH AUTISM AND ALL PARENTS TO EXPERIENCE THAT SAME HELP.
MIROISON WANTS THAT PROGRAM EXPANDED TO INCLUDE ALL CHILDREN WITH AUTISM. RIGHT NOW PRE-SCHOOL AGE KIDS ARE ELIGIBLE AND ARE SELECTED RANDOMLY. THE DIRECTOR FROM THE HEALTH MEPARTDENT SAYS IT IS ABOUT TRYING TO EN SURE ALL PARENTS HAVE EQUAL OPPORTUNITY TO ACCESS THE PROGRAM. THERE IS A GREATER NEED AND IT IS HOPED THE PROGRAM SHOULD BEEX PANNED. DANA SHAW SAYS SHE BELIEVES THE PROVINCE IS BEING AS FAIR AS IT CAN BE IN THE SELECTION PROCESS BUT THE BEST WAY TO IMPROVE IT IS TO GIVE IT TO ANY CHILD WHO NEEDS IT.
PATRICIA MURRAY SAYS SHE HARD THE CONCERNS BEFORE BUT IT IS A KROFTLY PROGRAM. COSTING $4 MILLION A YEAR.
THERE ARE PATHOLOGISTS, OCCUPATIONAL THEY WEREIISTS; AND THOSE RESOURCES ARE GETTING TRICKIER TO ATTRACT AND RETAIN. THAT WOULD BE A CHALLENGE AS WELL.
THE PROGRAM STARTED IN 2005 AND 120 CHILDREN HAVE TAKEN PART. MURRAY SAYS SHE IS NOT SURE HOW MANY CHILDREN ARE WAITING TO GET IN BUT THEY ARE COLLECTING THAT INFORMATION NOW. DAWN MORRISON WANTS SOMETHING DONE IMMEDIATELY.
PARENTS ARE DESPERATE. AND NO WONDER. WE ALL WANT HELP FOR OUR CHILDREN. AND THERE IS SOMETHING OUTTHERE THAT CAN HELP SIGNIFICANTLY TAN SHOULD BE AVAILABLE MANY FOR ALL.
THE ISSUE WILL BE BROUGHT UP IN THE LEGISLATURE TOMORROW.
-----------------------------
Nova Scotia Legislature
Hansard
Tuesday, November 4, 2008
MR. DAVID WILSON (Sackville-Cobequid): Thank you, Mr. Speaker. I bring
the attention of the members to the west gallery. We have Dawn
Morrison who joins us today. She's been a strong advocate for the
autism movement here in Nova Scotia , so if we could give her a warm
welcome. (Applause)
MR. SPEAKER: Certainly welcome to all those guests and all the other
people who are visiting us in the gallery today.
We'll commence now with the daily routine.
HEALTH: AUTISM PROG. - STATUS
MR. DAVID WILSON (Sackville-Cobequid): Mr. Speaker, my question is for
the Minister of Health this afternoon. Nova Scotia is seriously
lacking in services for children with autism. The government's
solution was the early intensive behavioural intervention and
treatment program or the EIBI. I would like to table a press release
from 2004 that states, "Details of the treatment roll-out plan are
still in development, but it is expected that it will take about three
years before the program will be fully operational within the nine
district health authorities and the IWK." So my question today is for
the Minister of Health. Can he explain why this program is still not
fully functional and operational, leaving Nova Scotian children
without services they need?
HON. CHRISTOPHER D'ENTREMONT: Mr. Speaker, I will be bringing in the
report, as the member opposite knows. After a three-year period the
department wishes to do a review of the EIBI Program and at that point
make a decision on the future of the program, whether it worked or
not, find out what the deficiencies are and try to put a cost to what
a full program would look like. I will be tabling that report in the
House - maybe later today, if not tomorrow - to bring to the House's
attention the successes of the EIBI Program.
MR. DAVID WILSON (Sackville-Cobequid): Mr. Speaker, the EIBI Program
is helping 27 children per year in Nova Scotia . According to the
Autism Society of Nova Scotia, there are approximately 1,790 children
here in our province with autism and pervasive developmental
disorders. That's a large number of children here in our province. So
I would like to ask the minister, can he explain why after four years
and over $12 million, you are only helping 27 of these 1,790 children
here in Nova Scotia ?
MR. D'ENTREMONT: Mr. Speaker, over the last number of years it has
been a learning process, not only for the department but for the
individuals who offer the service, as well as the families that are
receiving that service. We will have a report that will talk about the
importance of the program, the effectiveness of the program and
recommendations on the future of the program. Right now, there are 117
children who have gone through the program when it does complete in
the Spring and we would like to see more children go through that
program, as it has been very effective.
MR. DAVID WILSON (Sackville-Cobequid): Mr. Speaker, the EIBI program
has done a lot of good for the 27 children each year who are able to
access it, but what about the 1,763 other children that they are
refusing to help today in this province? I would like to ask the
minister, when are you going to help these 1,763 children by expanding
the program across this province?
MR. D'ENTREMONT: Mr. Speaker, the member opposite knows full well
that, of course, there are costs related to this program as well as
human resources related to this program. Finding the individuals that
can offer the program in the different districts, not only here at the
IWK but in the other nine districts across this province, is very
difficult. It would cost a fair sum to implement that program across
this province and it's one that needs to be considered during a full
budget process, it is one that the department will continue to work
with and work on in order to make sure that we help as many children
as is feasible, and can be done with the resources that are available
to Nova Scotians.
MR. SPEAKER: The honourable member for Kings West.
HEALTH: AUTISM FUNDING - COMMITMENT
MR. LEO GLAVINE: Mr. Speaker, my question is for the Minister of
Health. Last July the minister claimed that autism funding had grown
in leaps and bounds; one month later, the minister said that more
funding was needed. The fact of the matter is that no funding is
available to help families of autistic children, unless the child's
name is drawn out of a hat for funding. My question to the minister
is, will the minister clarify his commitment to funding and help all
children with autism?
HON. CHRISTOPHER D'ENTREMONT: Mr. Speaker, as my answers to the
previous question revolved around, we in the Department of Health, as
well as we as a government, would like to help all the children who
have autism. We speak to families just as much as the member opposite
about the challenges that they have with the children and trying to
find services for those children.
Again, this is a new program. I know over the last three years we have
spent well over $12 million to help the 117 children that have been
through the program. It would cost us, again, a fair sum in order to
expand that to the full gamut of the province - again, we are
receiving it in all parts of the province as well as here in metro. We
would have to find resources - not only monetary, but the individuals
who have to work so hard, one-on-one, with the families in order for
this program to succeed.
MR. GLAVINE: Mr. Speaker, the father of an autistic child, Jim Young,
recently wrote in The ChronicleHerald: Our family received no
financial support for treatment - never have. Yet in the last four
budgets, the government underspent in mental health programs by a
total of more than $1.5 million. My question to the minister is, why
isn't the government committing this money to help families like Jim
Young and their children coping with autism?
MR. D'ENTREMONT: Mr. Speaker, as the member opposite fully knows, as
we put a budget forward, as we try to start up new programs, from time
to time some of these programs become underspent because of just not
being able to find the people available to offer the services and
such. Every year we try to find a way to infuse money into new
programs and the EIBI program is not the only new program that people
are asking for, whether it be an expansion to the diabetes program,
whether it be a Pharmacare Program, whether it be another thing, so
there are competing priorities here. This report that I will be
tabling either today or tomorrow will show the successes, the
recommendations on how to bring this program forward, and to see more
children receive this service.
MR. GLAVINE: Mr. Speaker, in Monday's ChronicleHerald, the editorial
board stated the difference in outcomes for autistic children, unless
parents pay for the expensive treatments privately, can be tragic.
Mr. Speaker, in August the Deputy Minister had it right, calling on
government to commit more funding to mental health services. She
doesn't want a repeat of Nova Scotians spending 30 to 40 years in
provincial care. My question to the minister, with his own deputy
pushing for more funding for better mental health services, what is
the minister going to do to address the gaps in autism program
funding?
MR. D'ENTREMONT: Thank you very much, Mr. Speaker. I hope the member
opposite is not saying that the other programs under mental health are
not important. The deputy minister did have it right, because we do
need to spend more money on mental health but, with the other
competing priorities - and the member has these people who visit his
office as well, whether it be advocates for diabetes, whether it be
advocates for cancer care, whether it be advocates for whatever it is,
they're all asking for millions and millions of dollars to support
programs for the patients who they represent.
Mr. Speaker, again we will have a report that I believe is a good
report, that shows the success of the EIBI Program and one that will
have recommendations on how to enrich this program well into the
future.
________________________________________
RESOLUTION NO. 4623
MR. LEO GLAVINE: Mr. Speaker, I hereby give notice that on a future
day I shall move the adoption of the following resolution:
Whereas Kym Hume has been an educator for 31 years, presently serving
as the Annapolis Valley Regional School Board's Autism Consultant; and
Whereas since 1993 Ms. Hume has studied all aspects of autism spectrum
disorders and has educated parents, teachers, students and schools
across the province, bringing the STAR program to Nova Scotia; and
Whereas Ms. Hume is the driving force behind the opening of the Autism
Centre at Kingston School, which hosts all the autism programs for the
Annapolis Valley;
Therefore be it resolved that members of this House congratulate Kym
Hume for receiving the 2008 Sobeys Green Jacket Award from the
Provincial Autism Centre, in recognition of everything she has done to
promote autism awareness and education.
Mr. Speaker, I request waiver of notice.
MR. SPEAKER: There has been a request for waiver.
Is it agreed?
It is agreed.
Would all those in favour of the motion please say Aye. Contrary
minded, Nay.
The motion is carried.
__________________________________
RESOLUTION NO. 4654
By: Mr. Leo Glavine (Kings West)
I hereby give notice that on a future day I shall move the adoption of
the following resolution:
Whereas the Provincial Autism Centre was founded in 2002; and
Whereas this non-profit, community-based organization works towards a
world in which those who have autism spectrum disorders are able to
live their lives fully; and
Whereas the Provincial Autism Centre provides support and services to
those who are affected by autism spectrum disorders, through education
and programs;
Therefore be it resolved that members of this House recognize the
significant contribution the Provincial Autism Centre has made and
wish them continued success.
____________________________________
>From the Chronicle Herald (ChronicleHerald.ca)
Province urged to expand autism treatment program
By DAVID JACKSON Provincial Reporter
Wed. Nov 5, 2008.
Parents of autistic children and opposition critics are renewing their
demands for the province to expand an autism treatment program in
light of a report saying how well it works.
Dawn Morrison, whose seven-year-old son Max received a year of
treatment through the early intensive behavioural intervention
program, said Tuesday that it had a huge impact on him, helping him to
speak and be understood and giving him the ability to make friends.
"How can they make their way in the world without that?" Ms. Morrison
said at Province House.
She said it's frustrating to think other children who would benefit
from the treatment aren't getting it because the province doesn't fund
it for everyone.
She implored the government to cover the treatment for all eligible
children, as New Brunswick does.
Health Minister Chris d'Entremont said two challenges in expanding the
program are finding the extra $3 million a year to do it, plus the
people to deliver the specialized one-on-one treatment.
He said the province had been waiting for a report on its treatment
program.
The program, which started in 2005 and costs $4 million a year, has
been a big help for the children who participated, said a report
released last week.
Isabel Smith, a researcher based at the IWK Health Centre in Halifax ,
evaluated 27 children who completed a year of treatment and found all
of them had significantly improved communication skills, better
problem-solving skills and reduced behavioural problems.
Mr. d'Entremont said the department will use the report in its budget
planning for next year.
There have been 117 children in the program so far, but the Health
Department estimates there could be about 250 children at any given
time who could benefit from it. Children are picked at random for
treatment.
New Democrat health critic Dave Wilson and Liberal MLA Leo Glavine
grilled Mr. d'Entremont in question period about expanding the
program.
Mr. Glavine raised the case of a parent whose child was not picked for
treatment and who pointed out the government under-spent its mental
health budget by more than $1.5 million in the last four years.
"Why isn't the government committing this money to help families like
Jim Young and their children coping with autism?" Mr. Glavine said.
Mr. d'Entremont responded that there's lots of competition for money.
Autism affects normal brain development, leaving most people who have
the disorder with communication problems, difficulty with social
interactions and a tendency to repeat specific patterns of behaviour,
according to the Autism Canada Foundation.
The Nova Scotia program, delivered around the province, involves a
treatment team that may include autism support workers, speech
language pathologists, psychologists, occupational therapists and
social workers. The service is tailored to individual children.
( djackson@herald.ca)
________________________________
And another from the Halifax Chronicle Herald:
Treating autism
Tories need to step up
THE provincial government deserves much praise for putting $4 million per year into a two-year-old program that a new study shows greatly benefits preschoolers with autism.
Now Premier Rodney MacDonald’s Tories have a duty to do more.
It’s no exaggeration to say that children diagnosed with autism who receive early intensive behavioural intervention often can have their entire lives changed as a result. Instead of individuals whose ability to function remains significantly impaired, thus needing state-funded support over a lifetime, people with autism who get this treatment can often contribute greatly to society.
Given the vast difference such treatment can make, it is simply unconscionable a significant percentage of preschoolers diagnosed with autism won’t get the help they need, because their names didn’t come up in a lottery system. There are not enough spots in the program, offered at the IWK Health Centre, for all young children with autism in the province, so the lucky ones get in while the unlucky ones do not.
The difference in outcome, unless parents can pay for the expensive treatments privately, can be tragic.
Officials at the Department of Health say there are no plans to expand the program. That direction, indeed, has to come from government. Last summer, Health Minister Chris d’Entremont said that more funding for autism was needed, rising to perhaps $6 million to $8 million per year. It’s now time to make that commitment.
The results of the study released last week not only show the program significantly helps preschoolers with autism. The survey also revealed that the Nova Scotia-designed approach – which uses roughly half the hours per week compared to what the literature recommends – may point to a more resource-effective way to help those with autism. Critics are right to be skeptical until further follow-up studies are done, and the research is scientifically peer-reviewed. But there’s no question that if the results are borne out, there will be huge implications for autism treatment everywhere, since a lack of resources, such as finding trained staff, is a universal issue.
In finding more funding for this transformative program, government must also not rob other patients. Given the size of the total provincial budget, and glaring examples of waste in the past, surely $4 million more can be found to end a system that now randomly denies publicly funded, life-changing treatment to too many preschoolers with autism. No one should be satisfied with such a roulette-wheel approach, not when the stakes are so immense.
Many parents left out, of course, now turn to the private sector, using up their savings – if they have any – to do what any parent would.
The preschoolers’ treatment program is not the only answer, of course, to help the growing numbers with autism within our midst. Many school-age kids and young adults with autism also need services. Diagnosis still takes far too long. But the far-reaching potential of the IWK program should be clear to all. Government should do the right thing and expand its reach immediately.
------------------------
Autism therapy works, but . . .
Province won"t expand program
By JOHN GILLIS Health Reporter
Thu. Oct 30 - 5:35 AM
A treatment program for Nova Scotia children with autism works well for those who can get it, an independent evaluation says.
But the provincial Health Department has no plans to expand the service to accommodate all those children who might benefit.
Isabel Smith, a researcher based at the IWK Health Centre, evaluated 27 children who completed a year of treatment as part of the early intensive behavioural intervention program.
She found all of them had significantly improved communication skills. They also had better problem-solving skills and reduced behavioural problems.
Autism affects normal brain development, leaving most people who have the disorder with communication problems, difficulty with social interactions and a tendency to repeat specific patterns of behaviour, according to the Autism Canada Foundation.
The Nova Scotia program, delivered around the province, involves a treatment team that may include autism support workers, speech language pathologists, psychologists, occupational therapists and social workers. The service is tailored to individual children.
Standard evaluations showed children gained more than a year’s worth of language during a year of treatment.
Tracey Avery, the mother of two children with autism, said the program would help her boys reach their full potential.
"This program has started my boys in a direction that has shaped the way that they learn in a school setting," she said in a news release. "I will never forget how Kyle began to speak after five long years of silence and how Brandon ’s challenging behaviour improved with continued support."
Ms. Smith found the program had positive effects for whole families and 95 per cent of parents surveyed said they would recommend it to other parents of autistic children.
But as it stands, children are only accepted into the program on a randomized basis as spots open, said Patricia Murray, the Health Department’s director of children’s services.
The Health Department does not have current provincial numbers. But, as of March, 117 children had participated in the program since it began in 2005.
Ms. Murray said when the program was being developed it was estimated that at any given time there would be 230 to 250 children in the province who could benefit from the service.
"We’re really pleased with the outcome," Ms. Murray said, "but, at this point in time, there isn’t a plan to expand it."
The program costs $4 million a year.
( jgillis@herald.ca)
--------------------
and the comments posted :
mact wrote:
An effort for rapid expansion of this program should be undertaken. The reason I say this is, that the rate of autism seems to be rapidly increasing and the sooner a person can enter this program the more beneficial it will be to them.
selah wrote:
Four years ago we moved from NS to NB, and while I miss my home province, I am eternally grateful that we live here. I have a four year old son with autism, and it pains me to think of what his future would have been like if we had stayed in NS. Here in NB each child diagnosed with ASD receives 20 hrs a week of ABA therapy funded by our provincial government. My question is simple; if NB can afford this program, what the heck is wrong with the government in NS?? This is a serious problem, 1 in 125 children is now being diagnosed with autism. This isn't something that's going to just go away...these precious children need all the help they can get...RIGHT NOW!
Kontiki wrote:
I wonder if they use the same standard to allot "placement" to children with cystic fibrosis or leukemia? Shouldn't ALL children who need and can benefit from the program receive it? Autism Spectrum Diorder may not be life-threatening but it sure as hell is life-altering. It is long past due that such treatments are seen as healthcare and not an arbitrary social/educational service. So here we are folks, in the 21st century and some people are still putting a lesser value on the lives of children who have development disorders. FOR SHAME!!
Lainy wrote:
I have been doing this therapy on my own for the past 4 months as my daughter is on this wait list awaiting a spot. I am very happy there is a great program for autistic children in NS and I agree PRT is most likely the best, however the supply needs to meet the demand. If approximately 250 children require this therapy then how can we be happy with only a handful getting it. Autism symptoms can be greatly decreased if therapy is started at the earliest age possible. Being on a wait list for a possiblity of treatment is like the opposite of what needs to be done.PLans for explansion are necessary NOW!!! PLease listen to us parents who need help desperately. It is pretty bad when the department of health ( Patricia Murray ) agrees that moving to Alberta to get services is the solution for us families awaiting services.
ghamilto wrote:
The therapy works for only about 50% of affected children. Better than a kick in the pants, but it also points out that therapy is not the opnly thing missing. Adult support services tailored for autistics are needed desperately. There is a generation of aging parents that have no idea what is going to happen with their children when they (the parents) pass away. Worse yet - public education is even more desperately needed. For many adult autists the real problem is how they are treated by the rest of society - a society that does not understand them. A society creeped out by them, even. (for example, many people think that autists are violent and avoid them like plague). There is often no attempt by society at large to even try to understand. If you're on spectrum yourself, or have family members that are, then you know what I am talking about. We could benefit autists as much as ABA simply with more understanding. Google "the uncanny valley" to get a feel for why this happens (and no - autists are not robots, but the analogy still works - autists look completely human, but they don't quite act it, in neurotypical eyes). Don't get me wrong - the 50% that can be helped should be helped. We just cannot forget the other 50%.
apanda wrote:
What about autistic adults? While it is understood that children need special care to help in development, adults with autism who have been denied these services continue to be somewhat neglected.
JPY wrote:
First the province has to sued, petitioned and forced into funding a well intended but short- sighted 'program". Now when positive results are forthcoming there is no movement on expanding the treatment. You would think that publicly elected officials would gravitate to a winner, not shy away from it. This is dangling evidence of an opportunity for a productive life in front of terrified parents and tearing it up in front of them. Both the number of hours provided as well as the duration of treatment are well below the science based standard. I am glad that the Department of Health is "really pleased" with the outcomes for the 117 children lucky enough to be selected. There are thousands of persons in Nova Scotia dealing with autism but since the Department of Health "does not have current provincial numbers" I guess they are in no rush to provide medical treatment for the vast majority of individuals and families dealing with autism. I recall the Minister of Health recently stated in this paper that the program has grown in "leaps and bounds". What exactly was he talking about. Another meaningless platitude designed to deflect from the travesty being perpetuated in this province.
ItsJustmyOpinion wrote:
Its such a shame that our children, the future of both this province and this country, cannot get access to the programs they need to thrive. The Government of Nova Scotia thinks nothing of spending millions upon millions of dollars on a go-nowhere bid for the Commonweath Games, or a frivolous, dangerous, purchase of pint-sized ATVs, yet when it comes to the health of these kids they won't pony up anywhere near that same amount of cash. Rodney MacDonald is too far up the rear ends of big-named developers to care about the real future of our province,our kids.
---------------------------
From: Metro.ca
Canucks charity helps families battling autism
KRISTEN THOMPSON/METRO VANCOUVER
November 03, 2008 05:10
More than a decade ago, Clara and Paolo Aquilini, the owners of the Vancouver Canucks, learned their son had autism.
It was the frustration of watching him struggle to join or be told he couldn’t participate in normal activities that spurred them to create the newly launched Canucks Autism Network Society (CAN).
The mission of the charity is to provide year-round recreational and sporting activities, advocacy and resources for people with autism and their families.
“The Canucks Autism Network will play a key role in improving the quality of life for families living with autism in B.C,” said Chris Zimmerman, president and CEO of Canucks Sports And Entertainment.
-----------------------
From Newsweek:
from Newsweek:
HEALTH
Stomping Through A Medical Minefield
The author of a new book about autism says exactly what he thinks about vaccines and other hot topics.
By Claudia Kalb | NEWSWEEK
Published Oct 25, 2008
From the magazine issue dated Nov 3, 2008
Paul Offit—salt-and-pepper hair, wire-rimmed glasses, Phillies fan—hardly seems like the kind of guy who'd receive a death threat. He's a father who likes to hang out with his teenage kids, a doctor who wears khakis until they're frayed. But Offit, chief of infectious diseases at Children's Hospital of Philadelphia and the nation's most outspoken advocate for childhood immunizations, is at the center of a white-hot medical controversy. He believes passionately in the safety of vaccines; his enemies, many of them parents who blame these shots for their children's autism, do not. Offit says he's been harassed in public, and received threatening letters, e-mails and phone calls. One August morning, his wife, Bonnie, sent him a message before he spoke at a New York press conference promoting vaccination. Worried that protesters rallying outside the event might turn violent, she warned: "Be careful."
Immunologists were hardly the target of such wrath when Offit, 57, entered the field almost 30 years ago. But today, frustrations and fears about a mysterious brain disorder that strikes up to one in 150 kids have given rise to the most angry and divisive debate in medicine: do vaccines trigger autism? Offit, a vaccine inventor, says "no." His critics, who vilify him routinely on autism Web sites, say the question is still very much open. They think he's arrogant and a mouthpiece for Big Pharma. One recent post: "Offit should be prosecuted for crimes against our children." After the death threat—a man wrote, "I will hang you by your neck until you are dead"—an armed guard followed Offit to lunch during meetings at the Centers for Disease Control and Prevention.
But the scientist refuses to back down. In his new book, "Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure," Offit takes on his critics full-force, challenging them to prove the science wrong. Fearing for his safety, he isn't doing a book tour. "People think of me as this wild-eyed maniac," Offit says. "If I sat down with them for 10 minutes, they'd see that my motivation is the same as theirs. You want what's best for kids." Asked how he ranks the intensity of the vitriol aimed at him, Offit says simply, "Abortion, doctors who perform abortions."
Nobody's firebombing pediatricians' offices, and there's no moral dilemma here about when life begins. But the overarching question—what happened to my baby?—is still impossible to answer, and the anger is real and it's deep. Some parents of children with autism tell stories with an eerily similar start: an infant who was happy and healthy until she got her shots. Then, suddenly, she lost eye contact and language. Parents' dreams for their babies are buried in sadness, their pockets are emptied to pay for therapies, their worries about their children's future haunt them even as they're trying to get through the screaming, splattered minutes of the day.
Parents of children with autism are a diverse group. Many don't believe vaccines are to blame; they'd like to see attention shifted to better services for their children. But those who think vaccines are the culprit will continue to fight a government and pharmaceutical industry they do not trust. Such concerns have spread beyond the autism community. Choice has become a critical issue; a few weeks ago, parents rallied outside the New Jersey State House, protesting the state's requirement that the flu vaccine be given to children attending day care or preschool. (The parents support legislation that would let them opt out.) A recent CDC survey found that less than 1 percent of American toddlers received no vaccines at all by 19 to 35 months. But some parents are skipping certain shots or staggering the government's recommended schedule, a move that scientists worry could lead to increased outbreaks. This summer, the CDC reported 131 cases of measles, the largest number since 1996. Many of those kids' parents, says a CDC spokesman, were concerned about vaccine safety.
Offit's book is a critical assessment of the theories that have swirled around autism, the therapies marketed to fix it, and the people—the "false prophets"—who he says have taken emotional and financial advantage of parents seeking a cure. Few scientists are willing to touch this third rail of science publicly; Offit grabs it with two hands. He documents "false promises," like secretin, a hormone derived from pigs that was said to improve symptoms. He dissects hypotheses that gave rise to fears—first, that the measles-mumps-rubella vaccine causes autism and later, that thimerosal, a mercury-containing preservative, is the culprit—then lays out the evidence against them, including more than a dozen studies showing no link. He lambastes the lawyers, doctors, media, politicians and celebrities who he says have fueled the anxiety. The notion that vaccines cause autism, he writes, has "been clearly disproved."
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From Simcoe County AO :
Gravenhurst Boston Pizza and Autism Ontario Simcoe County Chapter invite you to a very special evening.
Boston Pizza in Gravenhurst is hosting an autism awareness night on Dec 7th. 10% of the food sales from 12 to 8pm will be donated to our Chapter! There will also be coffee, dessert and a silent auction.
Please see the attached flyer for details about this wonderful evening and be sure to share it with your friends and family! Come enjoy a great meal in a beautiful setting for a good cause!
Are you an artist or do you know an artist who has an Autism Spectrum Disorder and would like to donate a piece of art to this silent auction? If so, please contact Yvonne at y_grin@hotmail.com
Thanks, we look forward to seeing you there,
Amanda McNulty, President
Autism Ontario - Simcoe County Chapter
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From the York Region papers:
Sunrise show helps autistic artists
Newmarket
November 03, 2008 12:58 PM
By: Amanda Persico, Staff Writer
With coloured pencils, Aaron Carr, 21, draws a ship that stands against the intense shade of ocean blue.
The Newmarket artist is one of many supported by Kerry’s Place Autism Services and his art work is featured in the Art of Living show, hosted by Kerry’s Place and Community Living.
Proceeds from the sale will go directly to the artist, like Mr. Carr, for art supplies.
Art enriches everyone’s life and is a therapeutic form of expression that helps people, who can’t communicate effectively, show others how they are feeling, according to Ryan Glasgow, an autism support associate with Kerry’s Place.
“Art is expression, what you are feeling at this moment,” he said. “Think Picasso, you don’t have to get the message to understand the feeling.”
In its fourth year, Art of Living gives individuals with autism an opportunity to showcase their passion, Kerry’s Place autism associate Sara Jacob said.
“We see on a day-to-day basis how capable and talented these individuals are,” she said. The community can see that, too. Everyone relates to art and takes something from it.”
The art sale features about 30 artists from Kerry’s Place and Community Living. Art from members of Art Factor-e, an social art group with Kerry’s Place, will also be displayed.
This year, the number of programs for autistic individuals has doubled. Kerry’s Place offers respite programs, such as rock climbing, art, craft, movie-making, learning how to take public transit, news and media, sports and music.
“Art is a visual example of what these individuals are capable of,” Ms Jacob said. “This is expression in a different medium. With the show, people can start to understand what autism is about.”
Art of Living:
What: Art sale featuring art done by individuals supported by Kerry’s Place and Community Living
When: Until Nov. 7, 5 to 9 p.m. Meet the artists Thursday
Where: Sunrise of Aurora, 3 Golf Links Dr., Aurora
For more information, call Kerry’s Place at 905-713-6808, ext. 312
Google alert
http://www.midnorthmonitor.com/ArticleDisplay.aspx?e=1282033
Autism: Benchmarks are customary
Posted By Kiri Nesbitt
Posted 2 days ago
In regards to recent letters dealing with autism in the Mid-North Monitor, I would like to add my own comments.
It is customary to establish benchmarks when a new program is introduced, not after it has been running for 10 years.
We should therefore ask why the provincial government has waited so long before introducing “standards” for the funding of its autism program.
The answer is that the government wishes to further reduce the number of children who are eligible for publicly funded treatment. The benchmarks are designed to cull as many children from the autism program as possible.
According to Provincial Government Statistics approximately 10,000 children have been identified as autistic, yet only 2110 (21%) of them are benefiting from the government’s program. Imagine what would happen if only 21% of all children in Ontario went to school, and those that did would have to achieve 80% in every subject or else be expelled.
This is exactly the situation that those fortunate enough to get into the autism program face.
As for the rest -- well, expect to see them on the streets in a decade or so when their bankrupt parents are too old to care for them.
Kiri Nesbitt
Toronto
From a listmate
http://www.theglobeandmail.com/servlet/story/RTGAM.20081104.wlautism04/BNStory/lifeFamily/home
MDs grapple with McCarthy Effect
Article TRALEE PEARCE
From Tuesday's Globe and Mail
November 4, 2008 at 9:02 AM EST
A few years ago, when Vancouver autism specialist Vikram Dua faced a parent's query about a trendy alternative therapy for a child, he wasn't the best listener.
"I used to rail against it or argue with parents," he recalls of the discussions about restricted diets or the use of supplements.
The result: He tended not to see those families again. "And it didn't help the kids very much."
Now, Dr. Dua is less combative. He explains that of the more than 1,000 treatments out there, one or two might, indeed, work. He just doesn't know which ones work and for which kids.
Enlarge Image
Jenny McCarthy and Jim Carrey have campaigned to have toxins removed from vaccines. Doctors have taken notice. (PAUL MORIGI/WIREIMAGE)
Instead, Dr. Dua, a child and adolescent psychiatrist at BC Children's Hospital, asks three questions. Is the treatment safe? Will it suck time and resources from others that may help more, such as behavioural or speech and language therapy? And, in general, does it fit the parents' world view?
If the answers suggest no potential for harm, Dr. Dua says, "Go forth and propagate. And if it works, come back and tell me about it."
Call it the Jenny McCarthy Effect. The former Playboy bunny has followed up her public crusade against the vaccines she believes caused her six-year-old son's autism with a new book that details how she "beat" that autism with a restricted diet, metal detoxification and vitamins.
Ms. McCarthy's crusades aren't going unnoticed; she's made various media appearances and landed a recent cover story in US Weekly.
In response to Ms. McCarthy and other advocates, doctors who treat children with autism say, their bedside manner has had to evolve.
Autism experts have seen first-hand that parents of autistic children are particularly vulnerable to the lure of upstart remedies. While diagnoses can now be made as young as 18 months of age, there is often a long wait for expensive behavioural therapies. This leaves parents anxious to search for others.
Autism, a developmental disability known to affect brain function, resulting in difficulties with communication and social interaction, and unusual patterns of behaviour, has attracted some romantic notions, Dr. Dua says. "There is an Awakenings phenomenon," he says, referring to the 1990 movie in which Robert De Niro's character is briefly stirred out of a catatonic state. . "If only there was some way to unlock this child, unlock the mystery. There's this search for a panacea, for the one thing that's going to fix it."
Traditional medicine hasn't been able to offer parents a great deal of hope. When parents say the studies on medication aren't that strong, "it's not an unreasonable point," he says.
Darlana Mancuso, a mother living in Burnaby , B.C., has seen an increased openness in the 2½ years she's been seeking help for her son, Christian.
Their first pediatrician didn't think anything was wrong with Christian, now 5, even though he was displaying major behavioural problems. She now has a "dream team" of occupational and speech therapists, doctors and pediatricians who are willing to discuss everything from testing a few dietary changes to pulling back on his vaccinations.
"I've noticed in the last little while doctors now, I don't know what it is, they're not talking their talk any more," she says. "Some of them are saying that the milk, the gluten and the sugar - removing them is helping out."
Wendy Roberts, a developmental pediatrician who specializes in autism at Toronto's Hospital for Sick Children and at Bloorview Kids Rehab, says she's not only entertaining queries about diet and supplements, she's been inspired by these parents to start her own research on the effects of supplements such as Omega-3s, which have been shown to have some positive effects on children with attention-deficit hyperactivity disorder.
In her practice, she warns parents that she's never seen diet make a difference in a child who is not among the 20 per cent of autistic children with stomach and digestion issues. And she says the link between these issues and brain function remains unknown.
If parents do want to forge ahead, she advises a very gradual approach, with a huge amount of documentation to chart any changes. And, like most doctors in the field, Dr. Roberts says, she will also emphasize continuing with behavioural therapy.
At the other end of the spectrum, some pediatricians are known for heartily endorsing a number of alternative therapies. Chatham, Ont., pediatrician Wendy Edwards, who has experienced some success with a gluten- and dairy-free diet for her 8-year-old son, says parents considering the diet seek her out or are referred by other doctors who are open to the idea. "Doctors are starting to realize this is becoming huge and you can't just brush it off any more."
But she finds herself managing the expectations of parents thrilled to have found an ally. She is careful to tell parents that their child may not improve on the diet. And like her more conservative peers, she is a firm opponent of chelation therapy (a metal-detoxification process) and oxygen chambers.
Dr. Edwards is especially careful with the word "cure." In Ms. McCarthy's new book Mother Warriors: A Nation of Parents Healing Autism Against All Odds, Ms. McCarthy writes that her son doubled his vocabulary within two weeks of starting the gluten- and dairy-free diet and has now recovered.
"God bless Jenny McCarthy for getting us on the map," Dr. Edwards says. "But she's a little extreme sometimes."
Dr. Roberts says she shuddered recently when a grandfather called to say his grandchild no longer had autism. "For the majority of kids, if they've had real, true autistic wiring, they may go through a period where they look great and that's wonderful," she says. "But when the next developmental challenge comes and the anxiety level goes up, or the environment changes and the symptoms come back, the parents are devastated."
If and when that happens, up to 70 per cent of autistic children can also show signs of a budding psychiatric illness. Parents may choose to intensify alternative treatments instead of trying medication that can work, says Dr. Dua, a member of Canada 's Mental Health Commission.
Dr. Roberts says that even when she disagrees with an extreme approach such as the potentially deadly chelation, she will try to find a way to reduce the chance of harm.
Having stumbled upon an unlicensed physician practising the treatment, she implores parents to check credentials. She urges parents to ask the doctor to monitor the blood for minerals such as potassium that can fall to dangerously low levels. Above all, she tries not to blame parents for their easy devotion to seemingly odd choices.
"I know they're desperate, and who knows what any of us would do in that situation."
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From: http://thechronicleherald.ca/Editorial/1088192.html
The Chronicle Herald (Halifax)
EDITORIAL
Treating autism
Tories need to step up
Mon. Nov 3 - 4:46 AM
THE provincial government deserves much praise for putting $4 million
per year into a two-year-old program that a new study shows greatly
benefits preschoolers with autism.
Now Premier Rodney MacDonald's Tories have a duty to do more.
It's no exaggeration to say that children diagnosed with autism who
receive early intensive behavioural intervention often can have their
entire lives changed as a result. Instead of individuals whose ability
to function remains significantly impaired, thus needing state-funded
support over a lifetime, people with autism who get this treatment can
often contribute greatly to society.
Given the vast difference such treatment can make, it is simply
unconscionable a significant percentage of preschoolers diagnosed with
autism won't get the help they need, because their names didn't come
up in a lottery system. There are not enough spots in the program,
offered at the IWK Health Centre, for all young children with autism
in the province, so the lucky ones get in while the unlucky ones do
not.
The difference in outcome, unless parents can pay for the expensive
treatments privately, can be tragic.
Officials at the Department of Health say there are no plans to expand
the program. That direction, indeed, has to come from government. Last
summer, Health Minister Chris d'Entremont said that more funding for
autism was needed, rising to perhaps $6 million to $8 million per
year. It's now time to make that commitment.
The results of the study released last week not only show the program
significantly helps preschoolers with autism. The survey also revealed
that the Nova Scotia-designed approach - which uses roughly half the
hours per week compared to what the literature recommends - may point
to a more resource-effective way to help those with autism. Critics
are right to be skeptical until further follow-up studies are done,
and the research is scientifically peer-reviewed. But there's no
question that if the results are borne out, there will be huge
implications for autism treatment everywhere, since a lack of
resources, such as finding trained staff, is a universal issue.
In finding more funding for this transformative program, government
must also not rob other patients. Given the size of the total
provincial budget, and glaring examples of waste in the past, surely
$4 million more can be found to end a system that now randomly denies
publicly funded, life-changing treatment to too many preschoolers with
autism. No one should be satisfied with such a roulette-wheel
approach, not when the stakes are so immense.
Many parents left out, of course, now turn to the private sector,
using up their savings - if they have any - to do what any parent
would.
The preschoolers' treatment program is not the only answer, of course,
to help the growing numbers with autism within our midst. Many
school-age kids and young adults with autism also need services.
Diagnosis still takes far too long. But the far-reaching potential of
the IWK program should be clear to all. Government should do the right
thing and expand its reach immediately.
From a listmate
CJCH News (CTV Halifax) - Monday, November 3 2008 - 23:30 (Local) - Segment #3
CJCH
DAWN MORRIS SON SAYS HER SON BENEFITED FROM AN INTERVENTION PROGRAM AND SHE BELIEVES ALL CHILDREN WITH AUTISM SHOULD HAVE THE SAME OPPORTUNITY.
I AM SO GRATEFUL FOR THE WORK OF EIBI FOR MY FAMILY AND THE CHANGES I HAVE SEEN IN MAX. AND I WANT ALL KIDS WITH AUTISM AND ALL PARENTS TO EXPERIENCE THAT SAME HELP.
MIROISON WANTS THAT PROGRAM EXPANDED TO INCLUDE ALL CHILDREN WITH AUTISM. RIGHT NOW PRE-SCHOOL AGE KIDS ARE ELIGIBLE AND ARE SELECTED RANDOMLY. THE DIRECTOR FROM THE HEALTH DEPARTMENT SAYS IT IS ABOUT TRYING TO EN SURE ALL PARENTS HAVE EQUAL OPPORTUNITY TO ACCESS THE PROGRAM.
_______________________________
CJCH News (CTV Halifax) - Monday, November 3 2008 - 18:00 (Local) - Segment #3
CJCH
THE MOTHER OF AN AUTISTIC CHILD IS CALLING ON THE NOVA SCOTIA GOVERNMENT TO EXPAND THE INTERVENTION PROGRAM FOR AUTISM. SHE SAYS HER SON BENEFITED FROM TAKING PART AND SHE BELIEVES ALL CHILDREN WITH AUTISM SHOULD HAVE THE SAME OPPORTUNITY .
Reporter: MORRISON CAN'T BELIEVE HOW FAR MAX HAS COME IN THE LAST SEVEN YEARS. MAX HAS AUTISM.
THERE WAS A LOT OF MELTDOWNS A LOT OF FRUSTRATIONS.
NOW MAX IS SOCIALIZING AND GOING TO SCHOOL. AND SHE SAYS IT WOULD NOT HAVE HAPPENED WITHOUT THE EIBI PROGRAM FOR EARLY BEHAVIOURAL INTERVENTION. DESIGNED TO HELP WITH SOCIAL AND COMMUNICATION SKILLS. MAX WAS ENROLLED TWO YEARS AGO BEFORE HE STARTED SCHOOL.
I AM SO GRATEFUL FOR THE WORK OF EIBI FOR MY FAMILY AND THE CHANGES I HAVE SEEN IN MAX. AND I WANT ALL KIDS WITH AUTISM AND ALL PARENTS TO EXPERIENCE THAT SAME HELP.
MIROISON WANTS THAT PROGRAM EXPANDED TO INCLUDE ALL CHILDREN WITH AUTISM. RIGHT NOW PRE-SCHOOL AGE KIDS ARE ELIGIBLE AND ARE SELECTED RANDOMLY. THE DIRECTOR FROM THE HEALTH MEPARTDENT SAYS IT IS ABOUT TRYING TO EN SURE ALL PARENTS HAVE EQUAL OPPORTUNITY TO ACCESS THE PROGRAM. THERE IS A GREATER NEED AND IT IS HOPED THE PROGRAM SHOULD BEEX PANNED. DANA SHAW SAYS SHE BELIEVES THE PROVINCE IS BEING AS FAIR AS IT CAN BE IN THE SELECTION PROCESS BUT THE BEST WAY TO IMPROVE IT IS TO GIVE IT TO ANY CHILD WHO NEEDS IT.
PATRICIA MURRAY SAYS SHE HARD THE CONCERNS BEFORE BUT IT IS A KROFTLY PROGRAM. COSTING $4 MILLION A YEAR.
THERE ARE PATHOLOGISTS, OCCUPATIONAL THEY WEREIISTS; AND THOSE RESOURCES ARE GETTING TRICKIER TO ATTRACT AND RETAIN. THAT WOULD BE A CHALLENGE AS WELL.
THE PROGRAM STARTED IN 2005 AND 120 CHILDREN HAVE TAKEN PART. MURRAY SAYS SHE IS NOT SURE HOW MANY CHILDREN ARE WAITING TO GET IN BUT THEY ARE COLLECTING THAT INFORMATION NOW. DAWN MORRISON WANTS SOMETHING DONE IMMEDIATELY.
PARENTS ARE DESPERATE. AND NO WONDER. WE ALL WANT HELP FOR OUR CHILDREN. AND THERE IS SOMETHING OUTTHERE THAT CAN HELP SIGNIFICANTLY TAN SHOULD BE AVAILABLE MANY FOR ALL.
THE ISSUE WILL BE BROUGHT UP IN THE LEGISLATURE TOMORROW.
__________________________
Helping Young Researchers by Participating in ASD Research
Monday, November 3, 2008 1:21 PM
From:
"ASD-CARC Autism Research Program"
To:
undisclosed-recipients
Good Afternoon,
In 2003 the Autism Spectrum Disorders - Canadian-American Research Consortium (ASD-CARC) started a strategic training program (www.AutismTraining.ca) to provide an opportunity for students and professionals to develop their technical and research skills, improve their communication skills, and expand their knowledge about ASDs. The ASD-CARC Research Registry allows trainees in the program to bring their research projects to more families by announcing it to families who have joined our Research Registry. Last year a trainee in our program posted a questionnaire at our website hoping to recruit "some" families to complete her questionnaire. She was thrilled to have an overwhelming response, with twice as many families responding than she expected, making her study far more robust. To read about her findings, please go to this link:
http://asdcarc.com/index.php/publisher/articleview/frmArticleID/333/staticId/442/
We are now announcing three new studies by trainees in our program. These are from trainees from Queen's University (Tess Clifford with Dr. Patricia Minnes in the Department of Psychology and Tiziana Bontempo with Dr. Rosemary Lysaght in the School of Rehabilitation Sciences ) and York University (Carly McMorris with Dr. James Bebko in the Department of Psychology). Their studies range from looking at the complicated process of diagnosing an individual with ASD, to experiences in parent support groups, to sensory experiences and work place experiences for adults with ASD. We hope that you will read more about their studies (below) and consider participating and perhaps even passing this email along to others who might be interested.
Examining the Diagnostic History of Individuals with Autism Spectrum Disorders (Carly McMorris/James Bebko)
Families of children with a diagnosis of ASD often report frustration with the process of obtaining a diagnosis for their child. It often involves multiple visits to a variety of different professionals with various diagnoses being given, including ADHD, Conduct Disorder, as well as possible medications and changes to the diagnosis over time. This study is intended to document these complicated histories which can be frustrating to families. The primary goal of this study is to better understand families’ experiences, which may help to delineate appropriate diagnostic procedures for professionals. Participation involves completion of an online questionnaire, which will take approximately 10-15 minutes. To learn more, or to participate, please go to this link: http://asdcarc.com/index.php/publisher/articleview/frmArticleID/332/staticId/442/
Support Groups for Parents of Children with ASDs: Predictors of Involvement (Tess Clifford/Patricia Minnes)
We want to learn about the experiences of parents of children with ASDs. We are especially interested in your experiences with parent support groups, and would like to learn how best to support all families of children with ASDs. In addition to feedback from you, if you are interested, you may be invited to participate in an online parent support group. There are 5 questionnaires that will take about 1 hour to complete; however, they can be completed at different times over a one month period. To learn more, or to participate, please go to this link: http://asdcarc.com/index.php/publisher/articleview/frmArticleID/329/staticId/442/
Sensory Processing Patterns in Adults with ASDs
(Tiziana Bontempo/Rosemary Lysaght)
We are interested in exploring the role of different sensory processing patterns in adults with ASD. Phase 1 involves the completion of a questionnaire on the general sensory experiences of adults with ASDs. One of the questions you will be asked is whether you participate in paid employment. Individuals who participate in paid employment may be invited to participate in Phase 2 of this study, which involves an interview to talk about your work. To learn more, or to participate, please go to this link: http://asdcarc.com/index.php/publisher/articleview/frmArticleID/331/staticId/442/
Sincerely
Jeanette J.A. Holden, PhD, FCCMG
Professor, Autism Research Program
Dept. Psychiatry and Physiology, Queen's University, Kingston, Ontario
Program Director, ASD-CARC (www.AutismResearch.com)
Program Co-Director, ASPIRE Training Program (www.AutismTraining.ca)
Program Director, AutismConnects (www.AutismConnects.com
---
From: Metro.ca
Canucks charity helps families battling autism
KRISTEN THOMPSON/METRO VANCOUVER
November 03, 2008 05:10
More than a decade ago, Clara and Paolo Aquilini, the owners of the Vancouver Canucks, learned their son had autism.
It was the frustration of watching him struggle to join or be told he couldn’t participate in normal activities that spurred them to create the newly launched Canucks Autism Network Society (CAN).
The mission of the charity is to provide year-round recreational and sporting activities, advocacy and resources for people with autism and their families.
“The Canucks Autism Network will play a key role in improving the quality of life for families living with autism in B.C,” said Chris Zimmerman, president and CEO of Canucks Sports And Entertainment.
From taline
Carly's breakthrough sends a clear message
November 03, 2008
Re:Compelling plea to address isolation, Nov. 1
I have a 13-year-old daughter with autism whose communication "breakthrough" – really the result of many years of intensive and consistent therapy – was widely reported earlier this year across all of North America and beyond. Carly's message was clear to other kids and remarkably compelling to parents. First, assume your child understands everything you are saying in front of him/her and don't give up on them.
When Carly was much younger, her prognosis was very weak. Today, she is asking to go to medical school. Telling a child at age 6 or 7 that they can no longer benefit from intensive behavioural intervention (IBI) therapy is tantamount to malpractice.
The other huge piece of learning that came from Carly is that she tells us she feels lonely. She wants friends. She sees her sister having sleepovers and she wants them too. She recently told one of her therapists that she wants to "feel normal" and she is angry that all her "friends" are twice her age and have to get paid to be there with her.
She has recently found some peers who can communicate like she does but they live in California and have reaped the benefit of that state's autism legislation. The issue with Carly and others like her are the interfering behaviours that make these kinds of relationships so challenging to develop. That has nothing to do with the desires to have typical relationships – the kind we all treasure. I think we are starting to learn that is one of the biggest myths of autism.
Arthur Fleischmann, Toronto
Thank you to Martine Stonehouse, an adult living with autism, for stepping forward and speaking out for the children with autism who cannot express their feelings and desires publicly for themselves. My son has cried to me that he wishes I could make his autism go away. I explain to him that his autism will never go away, but that is why he has special people working with him to help him learn how to cope with the challenges autism brings. If my son could tell Martine Stonehouse how grateful he is to you, I know he certainly would.
Nancy Morrison, Bradford
While autism isolates our children from the rest of the world around them, our government and school boards assist in the process by not allowing our children to receive therapy within a public education environment. The additional supports referred to by Children and Youth Services Deb Matthews once again fail to take into consideration what our children need in order to participate in our school system. Families continue to encounter barriers to access IBI therapy in the schools while these same barriers are non-existent in the U.S.
Ontario has already fallen decades behind in the programs and services offered to children and adults on the autism spectrum. How much more valuable time do we have to lose?
Taline Sagharian, Richmond Hill
I understand and agree with parent concerns regarding the IBI Benchmark Report. There is a sense of urgency to get children off IBI. However, there is little in place to support their transition to help maintain and generalize their newly acquired skills. I have two boys with ASD; only after over a year and a half of waiting did one son receive IBI.
My son is in a regular Grade 1 class as deemed appropriate by his IBI program psychologist. His kindergarten teacher also stated that Daniel would initially need to have full support to succeed in his Grade 1 class. Although, the Toronto District School Board superintendent acknowledged that my son needs support, he stated, "We cannot give it to him." He could not tell me who to speak to or where to go for help concerning my son. Daniel's teacher states he is having the most difficulty in the afternoon, when there is no assistance for him. Daniel is one of at least five children with higher needs in this classroom, yet there continues to be inadequate support here.
Daniel cannot generalize his skills nor be mainstreamed into a regular class without assistance. We hope that Daniel will not always need extra help, but we need to do the groundwork now. He has not only been put in a "sink or swim" situation, but his needs are blatantly being ignored.
He was put in this class with no assistance in the first two weeks of school. Thereafter, he was given all of an hour of in-class help per day. Although Daniel is supervised at recess, he was overlooked for almost two full months, being left outside alone at times after the lunch time bell to return to class. This type of incident, which clearly puts my son at risk, has happened repeatedly.
Alia Brum, Toronto
Is our society so micro-focused on gas price fluctuations, stock market ebbs and flows and electoral outcomes that we let dangle by the wayside our future generations to come?
Children of all abilities need support – be it a breakfast program, English as a second language or Applied Bahvioural Analysis (ABA) therapy. We simply must invest in them now. The isolation of autism is all encompassing, not only to the person receiving this diagnosis, but their families and indeed the community too.
Inclusion and trained staff in all classrooms is a step forward. Adequate funding to eliminate the waiting list for ABA therapy for all children is the highest priority our leaders and ministers must contend with.
A society filled with compassion and kindness and a community ready to offer meaningful work will all mesh together to remove that isolation that truly exists, quietly, compellingly.
Lillian Wagman, Toronto
FROM NANCY ’S LIST
(I am sending this message to this one group of addresses for a second time, as some from this group was returned to me undelivered and due to the importance of the first article, I wanted to retry to get it through to all of you. Sorry for any duplication. Nancy )
An excellent article by Helen Henderson in the Toronto Star. Thank you to the adult community who has played a big role in this article to help our children. Also, if so many letters were not sent to the Star regarding their editorial last week, the benchmarks may not have been given attention once again. This proves how our letters to the editors promote further coverage on our issues. Please, keep those letters going in, they are making a huge impact!!!!!!!!!!!!!!!! Remember to include your name, full address and telephone number, the name of the article and the date of print.
Log in to the article online to post comments: http://www.thestar.com/living/article/526268
Write a letter to the editor: lettertoed@thestar.ca
Compelling plea to address isolation TheStar.com - living - Compelling plea to address isolation
November 01, 2008
Helen Henderson
T he dots were white with tiny black circles in the middle. There were billions. So many, Martine Stonehouse felt she was swimming in a sea of them. That kind of intermittent visual disturbance is part of what it's like coping with autism.
When she was 5 years old, Stonehouse begged her father to let her join him on the garage roof, where he was fixing something. He refused. She waited.
When her father came down to fetch something, leaving the ladder in place, she seized her chance. She was up there "on top of the world," gazing far and away when her father returned.
"Get off the roof immediately," he shouted. She did. Jumped right down without hesitation. Thinking literally. That's part of having autism, too.
Stonehouse, who survived her roof jump with just a few bruises, is one of a group of adults writing first-hand accounts of what it's like living on the autism spectrum; their stories are in a slim, unassuming book published by the Ontario-based Autism Group. In Our Own Words is a mere 68 pages but it presents a compelling argument for full and adequate government funding of treatment and services for autistic kids.
Most of us understand that autism somehow cuts children off, isolating them in a world where they do not easily make contact with others. Perhaps you think the children might prefer to be left in these worlds, that they do not thank parents, however well-meaning, for trying to penetrate their isolation.
Think again.
Adults looking back talk about their hypersensitivity to noise and bustle others barely notice. They know they are different, have usually been teased and bullied. "People didn't matter to me during that time," writes Stonehouse. "I was more oriented to objects. It was safer but lonely."
Safer but lonely.
Yes, these adults wanted to be reached. And, yes, their accomplishments soared when they learned to interact.
American author Temple Grandin , who has a PhD in animal behaviour from the University of Colorado and also happens to be autistic, makes no bones about the issue in her book The Way I See It.
"Parents, hear this," Grandin says. "Doing nothing is the worst thing you can do. If you have a 3-year-old with no speech who is showing signs of autistic behaviour, you need to start working with your child now."
Easier said than done in Ontario . As an editorial in the Star noted last month, relations between parents of autistic children and Queen's Park remain uneasy after years of battles over waiting lists and eligibility for government-funded intensive behavioural intervention (IBI) therapy.
A recent report recommended a series of benchmarks to monitor a child's progress while receiving IBI, which can cost tens of thousands of dollars a year. That raised concerns that the benchmarks could be used to prematurely discharge children.
In a letter to the editor of the Star last month, Children and Youth Services Deb Matthews herself said Queen's Park is "moving ahead with parents and experts to expand the range of supports available for kids with autism and improving the capacity of the education system to support them, including providing IBI on site for the first time."
The number of children receiving IBI has risen to about 1,400 from 531 since the Liberals took office in 2003, the government says. Annual funding has jumped to $151 million from $44 million over the same period, it says.
Still, service providers say the money hasn't kept up with the demand. They blame funding crunches for waiting lists and say more than a thousand children are facing long delays for treatment.
If you have any doubt about what those delays cost the children who are waiting, read In Our Own Words. It's available in printed form or on DVD from autismontario.com.
Helen Henderson's column appears Saturdays. helenhenderson@sympatico.ca
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One of our active letter writing listmates, an understandably proud grandfather, has had a letter publish in The Mid-North Monitor last week:
Fear for autistic families
Posted By Dennis Lendrum
Posted 9 days ago
As a grandfather of an autistic child, who has been in the IBI Treatment Program and progressing very well with this therapy. Hopefully the treatment does not end before Alex reaches his full potential.
I have read the proposed October 14th, 2008 document over & over: “The Developement of Benchmarks for the Delivery of Intensive Behavioural Intervention for Children with Autism Spectrum Disorders in Ontario ”
I fear for what will happen to our grandson and the many other children diagnosed with autism in Ontario if the document is adopted by Ontario ’s Government, let along what it will do to autistic adults in the future.
After many years of frustration that the parents of autistic children have had in dealing with Ontario ’s Queen’s Park, we all have our guard up and are suspicious.
If I am wrong, please let me know how this document will help autistic children or adults. I sure hope that I am reading it wrong! But, to me, the present Ontario provincial leaders have just produced a document that will bail them out of their responsibility to be accountable and responsible for the best possible treatment for autistic children here in Ontario and what causes autism.
It appears to me that this document will justify when a child is cut-off. Now instead of it being called “Age 6” it will be called “Benchmarks” in Ontario .
I pray that all Ontario MPPs reject this document and request that Canada ’s federal leaders come up with a National Strategy, so that all Canadian autistic children/adults get the best possible treatment that Canada can offer, no matter where they live.
We know that IBI & ABA are the best possibly treatments at this time. The big question is: Can it be delivered in our present school system or do we need to make the necessary changes, so that all children/adults of Canada get the best possible education/treatment?
This is why the parents of autistic children have been asking our Federal Government for a National Strategy, so that all children of Canada are treated equally.
In reading about the American debate, we can see that the candidates of the American campaign agree that, “Autism is on the rise, and we’ve got to find out what’s causing it now!” (As was stated at Hofstra University , October 15th, 2008).
Senator Jim Munson’s “Pay Now or Pay Later” can give our federal leaders some clear direction as to where we will be in a few years, with autistic children/adults.
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From the Montreal Gazette:
Football takes back seat to autism
'Toughest thing I've ever done,' Eskimos coach Thorpe says of raising son with the disorder
HERB ZURKOWSKY
The Gazette
Saturday, November 01, 2008
It's a home like many others, a corner lot located in suburban St. Albert . With toys scattered throughout, a small trampoline in the living room, a swing in the basement, it's obviously the home of small children.
But there's one obvious difference, the pictograms - a pictorial symbol for a word or phrase - located in the bathroom, by the toilet and sink, and in the kitchen, on the refrigerator.
Peyton Thorpe, who will turn 5 in December, gets off the school bus close to 4 p.m., about 15 minutes after his sister,
Emma, 6, gets picked up from school by her mother. Peyton's tall for his age, his eyes wide and curious. There are cartoons on the television that catch his attention. Later, he goes to a kitchen drawer, seeking his DVD player. He grunts and groans, almost never talking.
"He's like any other kid," said his father, Noel Thorpe, the special-teams coordinator and defensive-backs coach for the Edmonton Eskimos since late November - after six seasons spent with the Alouettes in the same capacity.
"We treat him like any child, and the goals are the same," Thorpe continued. "I think of him as a non-import fullback in the CFL. The goals are the same, although it may take longer."
Perhaps Peyton Thorpe will become a professional football player. His parents figure he'll be about 6-foot-2 when he finisshes growing and, undoubtedly, with his genetic pool, the possibility exists. His mother,
Erminia Russo, is a former Canadian Olympic volleyball player and now a CBC sports analyst, who recently returned from the Beijing Games.
There's only one potential obstacle in the child's path - autism, a brain disorder that hampers development and affects the ability to communicate and relate to others. The affliction starts before a child turns 3.
Autism has a strong genetic link, though the genetics of autism are complex. Some with autism are relatively high-functioning, with speech and intelligence intact. Others, however, experience severe difficulties in speaking and language.
Recent reviews estimate a prevalence of one to two cases per 1,000 people for autism; about six per 1,000 for autism spectrum disorders (ASD), with ASD averaging a 4.3-to-1 male-to-female ratio. The number of people known to have autism has dramatically increased since the 1980s.
Thorpe and Russo face daily challenges as the parents of an autistic child, and face an uncertain future, because nurturing an autistic child is obviously difficult. The heaviest burden from May until November, when Thorpe's busy with the Eskimos, falls on Russo.
"I'm not going to lie. This is the toughest thing I've ever done," she said. "I competed and trained for 20 years, but that was no comparison. As a coach or an athlete, you put the time in and see improvement. That's what makes this really difficult. Some days are better than others."
"As a parent," Thorpe added, "you must have a great deal of energy. He doesn't learn in a
typical fashion, so you search for different ways. What a typical child learns through observation, he doesn't. We come from a world of routine and repetition. That's what he needs. It's the same with players. They don't all learn the same way. With some, it's verbal, and with others, it's visual.
"With Peyton, you've got to be creative in how you teach and think outside the box.
He's learning, but in a different way. He reads, but then he
needs a timeout to jump on the trampoline."
Their son was like any child until he was about to turn 2. Montreal had lost the 2005 Grey Cup to Edmonton in double overtime at Vancouver .
Thorpe and Russo, B.C. natives who lived in Pointe Claire while he worked for the Als, sensed something was different and just not right. While the babysitter played with Emma, Peyton was off on his own, interacting less. He was speaking less frequently, usually using single words, and there was less eye contact. His name would be called, but there was no acknowledgment. They initially thought it might be his hearing, but that theory quickly was dispelled.
Their pediatrician, Westmount 's Dr. John Yaremko, had suspicions. And with the assistance of Dr. Steve Treherne, part of the Autism Spectrum Disorders Program at the Montreal Children's Hospital, the diagnosis was confirmed in September 2007.
Russo said it took her longer to accept the stark reality of the shocking news and, even then, her initial feeling was one of denial. Her husband was more pragmatic.
"The first thing I felt was disbelief," Thorpe said. "The fear of the unknown and what does the future hold. You finally come to grips with it, which didn't take long. Then you must figure out a game plan, get that organized and determine the best form of action. It needed to be immediate."
There was a sense of urgency, knowing the critical stage for an autistic child is from age 2 to 5. And the parents were advised by Yaremko the process would be long, slow and laborious.
Thorpe conducted a copious amount of research into the disease, how to get the best therapy and what forms worked best. Peyton was enrolled at the Pat Roberts Centre, a Pierrefonds- based adapted preschool offering intervention and stimulation for children with special needs between age 2 and 5.
When the family relocated to Alberta , they found more facilities and services available. Five mornings each week, he receives in-home specialized therapy, lasting more than two hours. And four afternoons each week, Peyton attends preschool where he has been put into an integrated class of 12; six children, all girls, are typical. The remainder have various needs. When Payton's in his daily routine, his parents said he functions better. Weekends and evenings, when life is more spontaneous, have their challenges.
"There have been some breakthroughs," Thorpe said. "One day, you see a cloud over him. Another day, we can see we've broken through, to a degree."
Although there are fears and anxieties on a daily basis, it also has helped to speak with Eskimos receiver Brock Ralph, who requested a trade from Hamilton so he'd have access to therapy for his autistic daughter. Thorpe and Russo also met other families with autistic children; at least one, a teenager, leads a normal life.
"It's great for us to see that's where he can be," Thorpe said. "He can go to university, have a job, get married, have kids."
Other than a handful of
Eskimos players, Thorpe has kept things private, figuring there's no need for his personal and professional lives to overlap. Plus, he wants his players to know he's totally committed and focused. It also helps that
Thorpe's boss, head coach Danny Maciocia, is empathetic.
"This has given me a greater appreciation for the people Noel Thorpe and Erminia are,"
said Maciocia, who also lives in St. Albert . "I can see why he's an outstanding coach from the way he interacts with Peyton."
Thorpe doesn't know what the future holds, but understands there will be challenges and obstacles ahead; hurdles he seems willing to tackle head-on.
"I can't imagine him not speaking. That's a goal," he said. "But let's be honest. If he doesn't,
I won't love him any less. It's about the connection between two people. There doesn't have to be words."
hzurkowsky@thegazette.canwest.com
© The Gazette ( Montreal ) 2008
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London Free Press:
New centre offers valuable support to family, victims
First facility of its kind opens in city
By DALE CARRUTHERS, SPECIAL TO SUN MEDIA
Information is the best tool for fighting autism, says the head of Libro Financial Group.
And that's why the company decided to donate $20,000 to build the Libro Resource Centre for Autism, president Jack Smit said.
"We are about helping people help themselves," Smit said at the new centre's opening ceremony this week at the Autism Ontario Building in London .
Judy Wright, president of Autism Ontario 's London chapter, said the centre is the first of its kind in the city.
"It provides information, literature, educational materials, computer programs -- anything that would help benefit families and individuals living with autism lead successful lives," she said.
The centre is crucial to families with autistic children, because many other treatment programs have lengthy waiting lists, said Wright, who has a six-year-old autistic son.
"They (parents) can get a diagnosis today and be in our library tomorrow and get all of the information they need to help their child start moving forward," she said.
Autism spectrum disorder is a neurological developmental disorder that results in challenges with communication, social interaction and sensory issues. About one in 150 individuals is diagnosed with autism, Wright said.
Autistic children can benefit greatly from early treatment.
"We have lots of resources that go through early diagnosis," Wright said. "If a family suspects (autism), they come here and grab some literature on it."
But the centre offers more than literature. "We offer support groups specifically tailored to your situation. Get support, because you can't do it on your own."
Libro Financial believes supporting autism is important, Smit said, because it affects families in the community.
"We're very family-oriented," he said of the London-based credit union. "We can only be successful if our communities are successful."
---
AUTISM RESOURCE CENTRE
Where: 600 Sanatorium Rd. , Unit The centre is open 9 a.m. to 5 p.m., Monday to Friday.
Information, educational materials, computer programs and support groups are available.
For more information, call the London chapter of Autism Ontario at 519-433-3390.
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Regina's Leader Post:
Province expands autism services
Pamela Cowan
The Leader-Post
Friday, October 31, 2008
For more than a decade, Lisa Simmermon has advocated for better services for Saskatchewan children with autism. Now that help is on the way, she's pleased but worried.
The provincial government announced Thursday that 15 new consultants and 18 new support workers will be hired by the province's regional health authorities to provide enhanced services and supports to children with Autism Spectrum Disorder (ASD).
"We're in the process of setting up a couple of provincial meetings and the regions are going to be involved in the planning and the hiring of the individuals in order to provide the services throughout the province," said Linda Restau, director of program supports with Saskatchewan Health.
"It's positive to see that they're actually going to try to put in place some people who are targeted specifically for providing some of the treatment services that are needed for autism," Simmermon said.
The consultants, one of the first points of contact for families seeking ASD services, will design individualized intervention programs for children and act as case managers.
"We're looking for someone who has a master's degree in a human services field, so that could be a speech and language pathologist or an occupational therapist or an early childhood psychologist with some additional training in autism," Restau said.
The extra 18 workers will provide direct supports to children with ASD.
"We'd like to see these people with a minimum of two years of post-secondary training and early childhood development and then some additional training specific to Autism Spectrum Disorder," Restau said.
"Again, there's some funding that regions could use in order to provide that additional training to people."
Simmermon applauds the increase in services but questions who will provide the support.
"They must have some amazing incentive packages to draw people from other provinces," she said.
She'd like everyone who treats autistic children to be trained in Saskatchewan , similar to programs offered at the University of Manitoba .
Acknowledging that health-care professionals who are trained specifically to treat autism are in high demand, Restau said funding is available for health regions to either earmark a current employee for the positions and provide them with additional training or try to recruit them.
Restau hopes the new positions will be filled by the new year and expects that health authorities will work with local service providers to put together a plan.
The Framework and Action Plan for Autism Spectrum Disorders Services is the result of recommendations from the Provincial Autism Advisory Committee, which was formed in May to target how the province should spend the $3 million of annual funding allocated for ASD services.
"That committee consisted of a cross-section of various service providers, clinicians working in the field, community-based organizations, parents and ministries," Restau said.
"We also surveyed 650 parents throughout the province and as a result of all those discussions it was decided to place the consultants in the health regions across the province as opposed to just having them in Regina and Saskatoon ."
Besides requesting that services be geographically distributed, parents want early intervention and someone to help them develop a care plan and to assist in co-ordinating the services, she said.
As part of the plan, the Ministry of Health will work with health regions to increase access to summer programming and respite services for the families of children with ASD.
About one in every 166 children born in Saskatchewan will eventually be diagnosed with ASD. The neurological disorder can impact communication, social interaction and behaviour.
© The Leader-Post ( Regina ) 2008
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Kingston Whig Standard:
Students silent for Autism
Group aims to raise awareness
Posted 1 day ago
Fourteen students at St. Lawrence College in the Autism and Behavioural Science program took a vow of silence to raise money for Autism Ontario : Kingston Sector.
Silent Days lasted 30 hours and raised more than $500 for the Kingston chapter.
"It was challenging to find alternative forms of communication, but we did it," said student Alexandra Bailey.
The group wore pins that explained their silence but still got looks from people who didn't understand why there was no thank-you after holding a door.
"Our professors banned talking in class to support us and brought in cue cards," she p>The group understands the biggest challenge facing children with autism is communication. Those barriers can lead to isolation and behavioural problems, often due to frustration, said Bailey. One of the main challenges of the group as therapists is to develop functional communication skills with autistic children.
Autism is a brain development disorder that usually appears in a child before the age of three. It affects the part of the brain that develops social and communication skills.
Most day-to-day challenges for children and adults with autism revolve around communication issues, both verbal and non-verbal, which impact social interaction and leisure activities. They may present difficulties when attending school or work.
An average of one in every 165 children has Autism Spectrum Disorder. In Ontario alone, there are approximately 70,000 individuals with the disorder, according to Autism Ontario .
Autism is still a fairly newly identified disorder and medical and educational professionals are still in the process of learning how it affects people. Similarly, the students are still developing methods of therapy that would be effective when working with autistic adults and children.
Students have organized a Halloween
fundraiser in hopes of raising at least $2,000 for the Kingston chapter of Autism Ontario .
A silent auction will take place at the event, with items including Leafs tickets, that have been donated by local businesses and families.
The fundraiser, dubbed "Thrilla Bash" is for people 19 years of age and older. It will be held at Brandees Bar, 178 Ontario St. , tonight at 9:30 p. m. Admission is $10 and includes a drink.
Copyright © 2008 The Whig Standard
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Halifax Chronicle Herald:
Autism therapy works, but . . .
Province won"t expand program
By JOHN GILLIS Health Reporter
A treatment program for Nova Scotia children with autism works well for those who can get it, an independent evaluation says.
But the provincial Health Department has no plans to expand the service to accommodate all those children who might benefit.
Isabel Smith, a researcher based at the IWK Health Centre, evaluated 27 children who completed a year of treatment as part of the early intensive behavioural intervention program.
She found all of them had significantly improved communication skills. They also had better problem-solving skills and reduced behavioural problems.
Autism affects normal brain development, leaving most people who have the disorder with communication problems, difficulty with social interactions and a tendency to repeat specific patterns of behaviour, according to the Autism Canada Foundation.
The Nova Scotia program, delivered around the province, involves a treatment team that may include autism support workers, speech language pathologists, psychologists, occupational therapists and social workers. The service is tailored to individual children.
Standard evaluations showed children gained more than a year’s worth of language during a year of treatment.
Tracey Avery, the mother of two children with autism, said the program would help her boys reach their full potential.
"This program has started my boys in a direction that has shaped the way that they learn in a school setting," she said in a news release. "I will never forget how Kyle began to speak after five long years of silence and how Brandon ’s challenging behaviour improved with continued support."
Ms. Smith found the program had positive effects for whole families and 95 per cent of parents surveyed said they would recommend it to other parents of autistic children.
But as it stands, children are only accepted into the program on a randomized basis as spots open, said Patricia Murray, the Health Department’s director of children’s services.
The Health Department does not have current provincial numbers. But, as of March, 117 children had participated in the program since it began in 2005.
Ms. Murray said when the program was being developed it was estimated that at any given time there would be 230 to 250 children in the province who could benefit from the service.
"We’re really pleased with the outcome," Ms. Murray said, "but, at this point in time, there isn’t a plan to expand it."
The program costs $4 million a year.
( jgillis@herald.ca)
-------------------
Shared by a listmate:
Yes I Can Nursery School has a few available openings in the following classes:
Communication (Senior) Class (4 - 6 yr olds) Tues & Thurs mornings
(student ratio 4: 1….welcoming our children with additional needs)
Social Skills Class (4 – 6 yr olds) Tue & Thurs afternoons
(building social skills , school readiness)
Location: Yonge / Lawrence
Call: Janet or Jori 416 486 4911
Google alert
http://canadianpress.google.com/article/ALeqM5gnpnVgOO6oKOjywBVjQfVsq1sktw
Bad reputations dog young dads, but experts say reality is more complex
Oct 30, 2008
TORONTO — At the age of 21, Matt Chartrand thought he was ready to become a dad.
He'd spent half his teenage years hitchhiking around Canada after fleeing a violent home in Hamilton and had finally settled down in Ottawa .
He'd fallen in love with a woman he met at a Salvation Army shelter, had found work, and wanted to create the sort of close-knit family unit he had never experienced himself.
But when his son Jason was born, Chartrand learned firsthand that the new baby wasn't going to be the only one growing up quickly.
During the 10 years of Jason's life, Chartrand and his partner have learned not only the basics of child-rearing and the complexities of raising a family on a limited income, but how to cope with an autistic child who didn't utter a word for the first five years of his life.
Although he has no regrets about the hardships he's gone through and wouldn't exchange his son for the world, Chartrand acknowledges the decision to become a father at such a young age was not wise.
"It was a bit of an immature decision at the time," Chartrand said in a telephone interview. "I would never do it over again. I didn't think of the consequences of having a child back then."
Support workers who spend their days with young fathers say the reality check Chartrand experienced when his son was born is typical of young men who find themselves thrust into fatherhood.
Less common is Chartrand's decision to seek support from community groups and remain actively involved in his child's life, though they add that more dads would follow suit if they enjoyed the same access to social resources as young mothers.
Tim Paquette, chair of the Father Involvement Initiative - Ontario Network, points to a disparity in both the quantity and quality of services offered to young parents, saying women have access to a wide range of support systems that often shut fathers out.
"I think we've done a really good job of building a comprehensive system for the young mom, but we're really missing the equivalent for dad," he said.
"We're not being as inclusive of the dad as we could be. And that piece is missing for the baby and the developing child."
Through his years as a field worker with young fathers, Paquette believes the stereotype of the youthful, deadbeat dad is distorted, adding that systemic barriers often prevent young men from playing a greater role in their children's lives.
Fathers' names are not required on birth certificates, meaning that some would-be dads are excluded from the outset.
Paquette says some mothers also choose to conceal the presence and identity of a father in order to receive greater financial assistance from the government.
But Paquette feels the lack of community support services plays the greatest role in deterring young dads from embracing full parental responsibilities, adding that it reinforces the notion that the father's role is secondary.
"The man that wants to enhance his parenting skills finds a lack of programs and services, which really says a lot about the young man's role, that it really is dispensable."
Paquette says the solution is a sort of "one-stop-shop" where men have access to pre-and post-natal services, daycare, counselling, education and support programs.
One such facility, the Father Involvement Program in Abbotsford, B.C., is touted by some as a national leader in paternity support, and program co-ordinator Jeff McLean says the services offered have helped preserve many father-child relationships.
McLean says many young men under 25 are wary of using the organization's many offerings, but says a weekly floor hockey game with program staff and peers in the same situation often helps break the ice and shows that help is available.
McLean says many dads go on to take advantage of the parenting classes, relationship mediation courses, career counselling and individual support where they have the advantage of seeing firsthand how other fathers interact with their children.
"What I've seen is that a lot of these dads who would have walked away, when they actually have someone who comes alongside them and says 'I believe in you,' they rise to the occasion and do some pretty amazing stuff."
Chartrand credits community support for helping him and his wife to overcome the challenges involved in raising Jason, though he, like many of his contemporaries, struggled for years to find suitable programs.
It took five years for Jason's autism to be diagnosed, but progress was rapid once support workers and educational consultants were brought on board. They helped devise a program that has eventually turned Jason from a silent, sometimes aggressive toddler to an imaginative, chatty child.
Chartrand now devotes much of his own time to his local father support program, hoping to encourage other young men to follow his lead.
"I think the stereotype of the deadbeat dad is what makes guys give up so easily," he said. "If they had the right support or help, they could make it through."
Would you like to comment on this story? Send an email to geny(at)theCanadianpress.com
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