October 26th – November 3rd 2007
Groups 'disappointed' by failure to come up with nationwide strategy
By ALAN FINDLAY, NATIONAL BUREAU
The federal government is facing criticism from autism support groups, frustrated parents and senators after rebuffing their calls to implement a national strategy to cope with the disorder.
WRITTEN RESPONSE
The Conservative government's position comes in its written response to a recent Senate committee report calling for a national approach to the disorder affecting approximately six in 1,000 children.
While it highlights several funding initiatives involving research and transfer payments to other governments, it suggests more study is needed to form a consensus on the spectrum of disorders under the autism rubric.
"Accordingly, governments do not yet know enough about ASD and its treatments to implement effective and well-informed strategies that would lead to meaningful outcomes," the 12-page response states.
Titled "Pay Now or Pay Later: Autism Families in Crisis," the Senate Committee on Social Affairs, Science and Technology called for a national strategy to address the drastically unequal public funding and treatment provided from province to province.
Sen. Jim Munson complimented the government on what it's doing, but said it needs take on more responsibility.
"The status quo is not good enough, and that's what this report is," said Munson. "Whatever it takes to alleviate this suffering sidesteps any jurisdictional concerns."
Various autism support organizations held a teleconference this week to discuss the government's latest remarks on the issue. The groups were not pleased.
'VERY DISCOURAGED'
"People are very discouraged they (the government) seem to have dodged the issue," said Marg Whelan, executive director of the Geneva Centre.
"There's definitely some disappointment," said Laurie Mawlam, executive director of Autism Canada. "We are of the view that this is a health crisis and we need more targeted programming and a comprehensive national autism strategy for individuals with autism spectrum disorders."
Autism Society Canada president Christine Dade said it was unfortunate the government response to the committee came out during Autism Awareness Month.
"We had hoped the government would pick it up (the report) and wave the flag," said Dade. "We were quite disappointed on it."
Next story: On the Hill Sunflashes
Autistic children get lost in election shuffle
Barb Pacholik
Leader-Post
Saturday, October 27, 2007
While political parties toss out promises of drug plans, tuition cuts and PST-free used cars, a group of Saskatchewan parents long to hear about one issue that doesn't form a plank in any party's election platform.
Six decades after autism was recognized, Saskatchewan -- the birthplace of medicare -- remains the only Canadian province without a comprehensive, provincial autism treatment program. Saskatchewan is known as "Canada's Autism Wasteland" on some advocacy Web sites. "Change only happens with political will," said Lisa Simmermon, the Regina mother of an autistic son and a spokesperson for Saskatchewan Families for Effective Autism Treatment (SASKFEAT).
The Leader-Post's Weekender section today features stories from families who have been told early intervention for their autistic children is key, but they can't get it.
"It's like they don't understand our urgency, and we can't convince them of it," said Carla Webb, mother of four-year-old Isaac, and one of the families profiled.
Access to autism therapy became an issue in the recent Ontario election, but in Saskatchewan some families can't even get politicians seeking their vote to comment. One family recently asked a candidate about autism treatment only to be told "an election is not a time to comment on government services," said Simmermon.
A former Autism Society of Canada president, she has been on the frontlines of the fight for a program for more than a decade. Only this year has she seen the "first significant change."
Progress came in last spring's provincial budget, which promised $3 million "to develop an intensive autism treatment program for children moderately to severely affected by autism." The devil was in the details: the money -- $2.5 million for bursaries and training and $500,000 for ongoing treatment and support -- wasn't exactly creating the long-awaited program.
In a pre-election promise, the NDP government announced more money last month -- $3 million annually in ongoing support for autism services, beginning in the 2008 budget.
"It's fantastic that there is some funding, but so disappointing it's a tenth of what's needed," said Simmermon. SASKFEAT has estimated the cost of an intensive therapy program at $30 million.
"The big issue -- no matter who is elected -- how are they going to deal with the other 90 per cent?"
In an interview prior to the election call, Healthy Living Services Minister Graham Addley said the province is "getting the system ready" and realized more money was needed, so added the additional, ongoing funds.
However, the province first wants to talk to stakeholders, including experts, parents of autistic children and groups like SASKFEAT about how to spend it.
"We're moving down that road (towards a program) as quickly as we can," said Addley. "I don't think if we had provided more money that we could move any quicker." He noted that since spring $1.6 million has been spent "to get the system ready" by providing bursaries to train professionals.
Asked if this province might see the same sort of therapy available in Alberta, which has attracted residents from this province because autistic children can qualify for up to $60,000 in funding annually, Addley replied, "We're working towards our version of that."
Before the election call, SASKFEAT sought the Saskatchewan Party's position. In response, a letter from Brad Wall said his party "is willing to work with all stakeholders to improve the services available in the province for autistic children" and that "a long-term plan needs to be mapped out and implemented so families are not forced out of province because of inadequate health care resources."
In the meantime, people like Simmermon and Webb wait.
When Simmermon's son Hans was first diagnosed at age seven, the incidence of autism was running around one in every 10,000 people. Today her son is 18, and the prevalence, according to a recent Senate report, is at one in 166 people.
"Most people's extended families are going to include at least one person with an autism spectrum disorder . . . It used to be nobody knew about autism," said Simmermon.
© The Leader-Post (Regina) 2007
http://www.canada.com/reginaleaderpost/news/story.html?id=d1120684-4901-428f-be6a-17f6322b0f0b
GOOGLE ALERT
Doctors call for earlier autism screening
U.S. group wants kids checked twice by 2; Ontario has only explored feasibility
October 29, 2007
Lindsey Tanner
ASSOCIATED PRESS
CHICAGO–The leading pediatricians' group in the United States is making its strongest push yet to have all children screened for autism twice by age 2, warning of symptoms such as babies who don't babble at 9 months and 1-year-olds who don't point to toys.
The advice is meant to help both parents and doctors spot autism sooner. There is no cure for the disorder, but experts say that early therapy can lessen its severity.
Symptoms to watch for, and the call for early screening, come in two new reports.
They are being released by the American Academy of Pediatrics today at its annual meeting in San Francisco and will appear in the November issue of the journal Pediatrics and on the group's website, aap.org.
The reports list numerous warning signs, such as a 4-month-old not smiling at the sound of mom or dad's voice, or the loss of language or social skills at any age.
Experts say one in 150 U.S. children have the troubling developmental disorder.
Autism Society Canada puts the figure at about one in 165 children.
The new reports say children with suspect cases should be treated before a formal diagnosis is made.
In Ontario, there has been no push for testing, although the provincial government has explored the feasibility of universal developmental surveillance – which includes early signs of autism – focused on 18 months as a start, said Dr. Wendy Roberts of the autism research program at the Hospital for Sick Children.
There are basic warning signs at 12 months, including babies not pointing at things of interest in attempts to get their parents to look.
Debbie Hrybinsky, president of the Toronto chapter of Autism Ontario, and parent of autistic son Matthew, 7, called the U.S. recommendations a positive step. Her son's autism was confirmed by the time he was 3.
Her son would have benefited from the guidelines being proposed in the U.S., she said.
"If we got the diagnosis sooner I think he'd be further ahead,'' Hrybinsky said last night.
Dr. Chris Johnson, co-author of the new reports and a researcher at the University of Texas Health Science Center in San Antonio, said: "Parents come into your office now saying `I'm worried about autism.' Ten years ago, they didn't know what it was."
The authors caution not all children who display a few symptoms are autistic and parents should not overreact to quirky behaviour.
Just because a child lines up toy cars or has tantrums "doesn't mean you need to have concern, if they're also interacting socially and also pretending with toys and communicating well," said co-author Dr. Scott Myers, of Danville, Pa.
Recommended treatment for autism should include at least 25 hours a week of intensive behaviour-based therapy, including educational activities and speech therapy, according to the reports.
For very young children, therapy typically involves fun activities, such as bouncing balls back and forth or sharing toys to develop social skills; there is repeated praise for eye contact and other behaviour autistic children often avoid.
October 28, 2007 THE TELEGRAM (ST. JOHN'S) PAGE: A7 (OPINION)
An approach that works
I am writing in reference to the article published on Oct. 16, regarding Kelian Sarazin ("Readers help autistic child").
Kelian's response to the treatment from the Son-Rise program is commendable. However, I want to express my concern as I feel the article misleads the general public into believing that applied behaviour analysis (ABA) is not a successful form of treatment for the children of our province who are diagnosed with autism.
Over the past 40 years, a large body of literature has shown the successful use of ABA-based procedures to reduce problem behaviour and increase appropriate skills for individuals with autism and related disorders. Also, ABA-based approaches for educating children with autism have been extensively re-searched and empirically supported.
More than 550 studies have been published in scientific journals showing the effectiveness of behaviour analytic procedures for persons with autism. Furthermore, ABA is also considered the treatment of choice for children with autism as recommended by the Surgeon General of the United States.
As an educator who has been extensively trained in the area of ABA and verbal behaviour, I am a firm believer that different treatments work for different children. However, we are fortunate as a province to be offered ABA as the treatment of choice for our children who have been diagnosed under the autism spectrum disorder.
I applaud all the people that have stepped forward to assist Kelian in receiving his treatment of choice. However, there are hundreds of children in this province that would also benefit from such resources.
Personally, I would rather see my contribution put towards a research-based ABA program such as the one offered by the province. Laura Walsh
Mount Pearl
_____________________________
(The VIGIL idea is catching on outside of Ontario!!!! )
October 28, 2007 THE TELEGRAM (ST. JOHN'S) PAGE: A1 (FRONT)
Autism Society members hold vigil
Event aims to show support for families dealing with affliction
Tara Mullowney
Dozens of candles representing those living with autism spectrum disorder in this province lit up the parking lot of the Elaine Dobbin Centre for Autism Saturday evening, while family and friends recognized their loved ones with songs.
Seven-year-old Kailey Penney's battery-operated candle was one of them.
Kailey, who has autism, attended the Autism Society of Newfoundland and Labrador's first-ever vigil for those diagnosed with autism with her little sister, Alicia, and their mom and dad, Kevin and Linda. About 100 people took part in the event.
"It's been tough, but we've had a lot of support from the Autism Society and the centre," Kevin said.
He said Kailey was diagnosed with autism when she was three years old. Four years later, she has transformed from a non-verbal child to a beautiful blonde who likes swimming and going to Brownies, and is doing well in regular Grade 2 classes.
According to Autism Treatment Services of Canada, autism is a neurological dysfunction that is generally diagnosed at a young age. Symptoms include an impaired ability to interact socially and impaired communication skills.
"It might be the kid who goes to a birthday party and plays with the boots out in the porch, but doesn't come in and interact," said Trish Williams, executive director of the local society.
In addition to the vigil, the society held a family fun day at the centre to mark Autism Awareness Month Saturday afternoon, and is holding its second annual Active for Autism walk and run this morning.
The walk, which is open to everyone, is the major fundraiser for the society, raising close to $20,000 last year. Registration begins at the centre at 9 a.m., and the walk begins at 10 a.m.
High incidence
The rate of autism in this pro-vince is one in every 135 people, as of this year - higher than the national average of one in every 150. Williams said that in California, where statistics on autism have been compiled for the past 30 years, one person is diagnosed with classical autism about every two hours.
"It's one of those things that they don't really know the cause," Williams explained. "Dr. Bridget Fernandez (of the Janeway's medical genetics program) is doing research on that, and we do have family here in the province that are involved in some of the gene projects. "I think they've got it narrowed down so they know there are some genetic factors in it, but it's not just one gene - it seems to be a group of genes. It may even be something like diabetes, where you have a genetic predisposition with an environmental trigger."
Applied behavioural analysis (ABA) is the most widely accepted treatment for autism, and has been used in this province for the past eight to 10 years, Williams said, with positive results. The Elaine Dobbin Centre started its program working with adults and adolescents, and is hoping to start focusing on programs for school-age children.
tbm@thetelegram.com
ILLUS: The Penney family of St. John's were among the 100 people who turned up for the 1st annual Candlelight Vigil for Autism Awareness at the Elaine Dobbin Centre for Autism (behind the Health Sciences Centre) on Clinch Crescent in St. John's on Saturday night. From left are Kailey, 7, (who is autistic), Kevin, Linda and Alicia, 5. With adults holding burning candles and children holding their battery illuminated candles, the theme of the vigil was, "A light of hope ... let it shine." - Photo by Joe Gibbons/The Telegram
570 words / mots.
______________________________
October 29, 2007 THE TORONTO STAR (MET) PAGE: A04 (NEWS)
Doctors call for earlier screening
U.S. group wants kids checked twice by 2
Lindsey Tanner, ASSOCIATED PRESS
Autism The leading pediatricians' group in the United States is making its strongest push yet to have all children screened for autism twice by age 2, warning of symptoms such as babies who don't babble at 9 months and 1- year-olds who don't point to toys.
The advice is meant to help both parents and doctors spot autism sooner. There is no cure for the disorder, but experts say that early therapy can lessen its severity.
Symptoms to watch for, and the call for early screening, come in two new reports.
They are being released by the American Academy of Pediatrics today at its annual meeting in San Francisco and will appear in the November issue of the journal Pediatrics and on the group's website, aap.org.
The reports list numerous warning signs, such as a 4-month-old not smiling at the sound of mom or dad's voice, or the loss of language or social skills at any age.
Experts say one in 150 U.S. children have the troubling developmental disorder.
Autism Society Canada puts the figure at about one in 165 children.
The new reports say children with suspect cases should be treated before a formal diagnosis is made.
In Ontario, there has been no push for testing, although the provincial government has explored the feasibility of universal developmental surveillance - which includes early signs of autism - focused on 18 months as a start, said Dr. Wendy Roberts of the autism research program at the Hospital for Sick Children.
There are basic warning signs at 12 months, including babies not pointing at things of interest in attempts to get their parents to look.
Debbie Hrybinsky, president of the Toronto chapter of Autism Ontario, and parent of autistic son Matthew, 7, called the U.S. recommendations a positive step. Her son's autism was confirmed by the time he was 3.
Her son would have benefited from the guidelines being proposed in the U.S., she said.
"If we got the diagnosis sooner I think he'd be further ahead," Hrybinsky said last night.
Dr. Chris Johnson, co-author of the new reports and a researcher at the University of Texas Health Science Center in San Antonio, said: "Parents come into your office now saying 'I'm worried about autism.' Ten years ago, they didn't know what it was."
The authors caution not all children who display a few symptoms are autistic and parents should not overreact to quirky behaviour.
Just because a child lines up toy cars or has tantrums "doesn't mean you need to have concern, if they're also interacting socially and also pretending with toys and communicating well," said co-author Dr. Scott Myers, of Danville, Pa.
Recommended treatment for autism should include at least 25 hours a week of intensive behaviour-based therapy, including educational activities and speech therapy, according to the reports.
For very young children, therapy typically involves fun activities, such as bouncing balls back and forth or sharing toys to develop social skills; there is repeated praise for eye contact and other behaviour autistic children often avoid.
____________________________________
October 27, 2007 THE LEADER-POST (REGINA) (FINAL) PAGE: G4 (WEEKENDER)
Waiting list for help is long
Barb Pacholik, The Leader-Post
As he pushes his riding car with his feet, Tate Kennedy breaks into a huge, four-year-old dimpled grin when he sees his partner. Moments earlier, the bubbly university student was enthusiastically praising his efforts to count -- if only up to one -- and distinguish a red block from a blue one.
"Tate, give me red," she asks. "This is red," the worker adds, putting his hand on the one block and then the other. "This is blue." She claps excitedly and gives him a high-five when, with a bit of help, he chooses the right colour. "You're so awesome today."
It could be just about any pre-school class. But there are differences.
Each one of the children, aged three to five, works one-on-one with a partner. On this morning, most are using the Picture Exchange Communication System (PECS), learning to exchange pictures for items since some of these autistic children may never speak. And clearly, not all of them are having as "awesome" a day as Tate. Ben Hextall, one half of three-year-old, autistic twin brothers, has no interest in the matching game -- trying to put Winnie the Pooh in the container with his own twin, instead of with Eeyore. Ben's soon crawling on the floor.
Thanks to some additional funding, the Autism Resource Centre (ARC) in Regina was able, for the first time, to hold summer camps specifically for pre-schoolers with autism. They filled up, in the words of one parent, "ridiculously fast," so eager were parents to find something to assist their autistic pre-schoolers.
All of these children are on a waiting list at ARC. Every parent at ARC knows their number on the list, as surely as they know their child's birthdate. "He's been on the waiting list for 21/2 years and he's still number 66," says the parent of one of Tate's fellow campers. "Every birthday he has should be a happy experience, but it feels just like we're losing time." Tate is number 97.
Losing time because many studies suggest early intervention provides the best chance of progress for autistic individuals.
Even when these families reach the front of the line, ARC will provide a program plan and some other support services. What it doesn't provide is a comprehensive, provincial treatment program for autistic children. Saskatchewan is the only province without one.
Tate was a happy baby who rarely cried, and loved to watch the ceiling fan spin or his soother twirl.
When autism was confirmed, his mother Kim Kelln-Kennedy thought: "We know what this is now. And we can go ahead and start doing what we need to do to help him reach his potential."
But she soon found herself frustrated trying to find and access the therapy that would help achieve that goal.
"Here's my son who is non-verbal. From the minute they enter the school system, they lose their (one-on-one) speech pathologist, and they're seen in a group setting with other kids from school," she says.
"It's all on our shoulders. We have to hire private speech pathologists, private OTs. Ideally, for a child with autism, they should be seeing a speech pathologist, my gosh, it would be great if we could see them a couple times a week."
Released earlier this year, the Senate report "Pay Now or Pay Later: Autism Families in Crisis" estimates the cost of autism therapy for one person at up to $60,000 per year -- much of which, the report notes, families have to pay for themselves because some provinces offer only limited help through their health care systems.
The treatment needs of an autistic child include behavioral intervention; speech therapy or communication assistance; occupational therapy to address motor skills and sensory issues; and medical, since many of the children have immune, metabolic and digestive disorders.
But what parents discover is that it's difficult, if not impossible, to find anyone in this province trained and accredited to offer behavioral intervention. While there is some provincial funding available for children with cognitive disabilities, even the maximum, if a family qualified, would cover only about one-tenth of the estimated cost of intensive, behavioral intervention therapy.
As youngsters, many of the autistic children can access speech and occupational therapists in the health-care system, although not nearly as much as recommended for autistic children. Once the kids are in the school system, those therapists are available, but the resources stretched to the limits. "It's not uncommon -- I hear from parents -- 'Oh, we're on a waiting list to see the school's occupational therapist. We think maybe next year we might get to see him,'" says Lisa Simmermon, a spokesperson for Saskatchewan Families for Effective Autism Treatment (SASKFEAT).
As for the medical issues, many parents face difficulty finding a doctor who understands the complexity of autism. The parents themselves often become the experts.
The challenges are doubled for Jocelyn Hextall. She's mom to twins Ben and Max, who were diagnosed near the start of the year.
"For a year and a half, you were just trying to get anybody to talk to you to find out what's going on. And then when you get through the assessment, then our house was just a revolving door. Somebody was in almost everyday for an assessment, to start hooking up to programs. Even though supposedly we were on all these programs ... nothing really comes through for you."
The boys are erratic sleepers and early risers, starting their day at about 4:30 a.m. -- "and that's considerably better than what we've ever had," adds their mom.
There are additional locks to keep the children from wandering off alone or getting into potential danger, like a bathroom. The entertainment centre and water cooler are hinged to the wall after one of the twins tried to pull the stereo on top of the other.
Both are non-verbal, but for a couple words that they don't necessarily use for the appropriate subject. The boys also lag behind their peers in gross motor skills, meaning they have to be lifted onto chairs or into bed. It takes two people to get them dressed. There's some urgency to work on improving those motor skills, given that the strapping boys each weigh 65 pounds.
Hextall watched how the twins, one of the boys in particular, blossomed intellectually at ARC's summer camp, starting to communicate with PECS and signing. She longs for more.
"My twins are at the age where they need somebody everyday. They need to be with an organization like ARC every single day ... to make the most amount of improvement."
A 2004 national study of publicly funded autism treatment by the Autism Society of Canada (ASC) shows Alberta, Manitoba, the Yukon and Ontario offer the most funding -- between $54,000 to about $79,000 per child -- for autism treatment. For Saskatchewan, the chart simply states "schools are expected to provide all students' needs from special education funding."
"Our education system winds up bearing the majority of the responsibility for service provision to children with autism spectrum disorder. This is a terribly unfair burden to put on our educators," says Simmermon, a former ASC president. "They are not trained to be autism treatment practitioners. They are not given the resources to put effective autism treatment into place in their classrooms, but they're supposed to be managing to cope with and equip these children. My hat goes off to them that they try."
For many Saskatchewan parents of autistic children, Alberta has become Mecca. Kelln-Kennedy and her husband have thought about moving to Alberta, where the government provides as much as $60,000 annually for each autistic child. Last month the Edmonton Journal reported that an influx of autistic students was putting a strain on Alberta's programs. The Kennedys opted to stay here, where they have the support of family, but other Saskatchewan residents have left.
On the frontlines of the fight for a comprehensive autism program in this province for more than a decade, Simmermon has a pretty good idea of what it should encompass.
The ideal program would start when the children are diagnosed as pre-schoolers. It would offer centre or home-based treatment, and every student would be tracked to be clear about what's working and what isn't so changes in therapy could be made. As they progressed to school age, the children, who are able, could be gradually introduced to a school setting with appropriate support in place. Simmermon adds that there must be a rural and urban component so autistic children across the province can benefit. SASKFEAT estimates the cost at about $30 million.
"Families with autistic children and autistic individuals themselves insist that governments must pay now for autism therapy, services and supports in order to obtain the greatest return on investment. Otherwise they will pay later in terms of much higher costs in future years for welfare, social services and institutional care," notes the Senate report.
Simmermon, whose own autistic son is now 18, is unlikely to benefit at this stage from the program for which she continues to fight. Knowing all too well that these autistic children will one day be adults, she's also advocating for skills and training programs.
"One in 150 (prevalence) means every school; it means most workplaces; it means every community is going to be affected by autism," says the Regina woman. "When we look at what the potential of people with autism spectrum disorder is, and how that can be of benefit to everyone else, it seems fairly reasonable to want to try to at least offer the possibility of exploring options for helping to build skills that enhance life choices, then providing the acceptance and accommodation that enables people with autism spectrum disorder to have success."
ILLUS: Colour Photo: Bryan Schlosser, The Leader-Post / Twins Max (foreground) and Ben Hextall, 3, play in the leaves. ; Colour Photo: Roy Antal, The Leader-Post / Tate Kennedy, 4, plays with a train with worker Nichole Weiisbrod. ; Colour Photo: Roy Antal, The Leader-Post / April Predinchuk (left) and Danell Park watch as Connor McLeod, 3 1/2, sorts shapes at a camp for autistic preschoolers. ;
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October 27, 2007 THE LEADER-POST (REGINA) (FINAL) PAGE: G1 / FRONT (WEEKENDER)
Finding a Fit
Parents of autistic children help them find their way in the world
Barb Pacholik, The Leader-Post
The magnet on the car's bumper shows a multicoloured ribbon formed by jigsaw puzzle pieces.
The car is parked outside the home of Carla and Graham Webb. The ribbon is a lot like life with their eldest son Isaac.
Some days all the jagged pieces that make up their complicated lives fit together pretty smoothly, and things run much the same.
At other times, like when a favourite television program ends or the loudspeaker system in church becomes overwhelming, the pieces fall apart -- and so does Isaac.
Unlike the puzzles the four-year-old loves to methodically arrange on the living room floor or manipulate on a computer screen, Isaac is an enigma not easily solved.
So much of understanding and trying to help a child with autism is guess work.
"It's a puzzle. We just have to find the right pieces, and put them in the right order," says Carla.
Never far from his mother's thoughts is how her son will fit into society, and how to create awareness so society will allow him to fit.
"Don't you put our boys in a box," she says, remembering an article she once read about institutionalizing children with autism -- like putting puzzles away on a shelf.
A cherubic, fair-haired boy with actor Paul Newman's glass-blue eyes, Isaac watches his wind-up car cruise across the dining-room table.
The fact Isaac looks and often acts like so many other children makes it even more difficult to explain a meltdown in the middle of a department store or why he might innocently wander into a neighbour's house and sit down in front of the television set. Some of the parents the Webbs meet with regularly at a support group have mentioned creating autism business cards, so people might understand that their child isn't simply misbehaving when they are in the throws of an autistic meltdown in a public place.
Like many autistic children, Isaac is a study in contrasts. He is generous with his hugs and can remember when favourite television shows are on; yet he can appear oddly detached from the world around him. Sometimes, he just stops and stares off into space. Tears welling up in her eyes, Carla says she used to feel sad whenever that happened, but she's since come to accept that he's happy.
"All the things that make us interact as humans -- it's like with autistic kids, they just don't seem important ... So when we wave hello and that's socially acceptable, it's not part of their repertoire," explains Carla.
Autism, usually diagnosed around age three, is a complex neurological disorder that affects development and how the brain processes information. It covers a spectrum that ranges from mild to severe with an array of symptoms, including high sensitivity to sounds, repetitive body actions like arm-flapping, no fear of danger, lack of eye contact, intense anxiety, and communication difficulties. It's three to four times more prevalent in boys.
There is no actual count of the number of autistic children or adults in this province. Estimates run between one in every 150 people (the figure typically used in the U.S.) or one in every 166 (from this year's Senate report). While most agree the numbers have risen dramatically in the last two decades, experts are divided on whether the incidence is truly increasing or reflects better diagnosis.
Six decades after the disorder was first identified, the cause remains elusive. Most recent theories suggest genetics loads the gun, so to speak, and something in the environment pulls the trigger.
"You feel like you did everything right, and you had this little boy who was doing well, and then all of a sudden, he stopped," says Carla.
Isaac said his first word at age one, and knew his alphabet, shapes, and colours by about 19 or 20 months. Fascinated by space, he could recite the planets in order.
"His expressive communication started, and then just kind of got stale," she says. The Webbs began to realize a lot of the words were being repeated by rote, and his language skills were regressing. His formal diagnosis came a year ago when he was three.
"The hardest thing has been to rethink my dream for him. The hardest part of me thinking about that is that it's just littered with question marks," Carla says.
She didn't have the luxury of time to nurse her emotions. Not only was she caring for Isaac's newborn brother Tennyson, then just 10 weeks old, but Isaac needed her more than ever.
"I found those first few weeks you had to put down your box of Kleenex and pick up your boxing gloves immediately because there were so many agencies to get in touch with and so many agencies that have let us down." There was so much to fight for -- money for respite care, for assessments, for treatment providers and, always, fighting the clock.
"It's like they don't understand our urgency, and we can't convince them of it," says Carla, who knows from her own work as a speech pathologist the importance of early intervention.
"It's up to us to pull it out. A lot of it's there," says Carla.
Today, Isaac is verbal, but not always communicative. Sentences usually consist of two words and sometimes he just repeats what he's heard without any real meaning. But his parents are excited that he at least has enough vocabulary to get his needs met.
However, he still isn't toilet trained despite his parents' best efforts; he loves to chew everything from the buttons off the remote control to window casings; is bugged by creases in things; and his gross and fine motor skills lag (the basement is like a mini OT lab, with a swing, exercise ball and mini trampoline), as does his social interaction. But Carla also recalls the day he made his parents see a Y-shape in the trees.
"We certainly aren't oblivious to the silver linings that Isaac teaches us everyday. He thinks differently. He draws our attention to things in ways we never would have noticed," says Carla, adding that it's also made her more appreciative of her younger son's developmental milestones. "It's really caused us to pause and just enjoy everything."
There's a saying that if you've met one autistic child -- you've met one autistic child.
The disorder manifests itself in so many different ways. But the parents often share similar stories of fatigue and frustration, interspersed with the moments of delight that any parent has for their child.
When Rip and Lauren Smith were still awaiting Max's diagnosis, they were told: "Our joys will be so much smaller, but they will feel so much bigger sometimes. And it's true."
Max was 18 months old when his parents noticed his stalled language development. He was diagnosed just after his third birthday.
Now age five, Max breaks into a high-pitched whine, can say the odd word but communicates mostly through pictures. Many autistic children use the Picture Exchange Communication System (PECS). When recently Max brought his PECS books to Lauren and showed her the picture of Chapters, his mother experienced one of those moments of joy she was promised. Still baby-like in his inability to dress himself, Max had acted spontaneously to communicate his desire to go to the bookstore. It was a pleasant surprise, contrasting with some of the more challenging times.
For many autistic children, change can be upsetting. And a simple transition from inside to outdoors -- let alone location to location -- can take minutes or hours or preparation.
Rip compares the difficulty to a marathon runner who's told at mid-sprint that he needs to stop and get in the car. "If (Max) is doing something, and all of a sudden, you say, 'OK, we're leaving.' He doesn't get it ... You have to give him some warning."
But even the best laid plans can fall apart. "One thing will set him off," says Rip. "It will set the tone for the rest of the day," Lauren completes the sentence.
Lauren remembers the day Max, sitting near the window colouring, spotted a bird while she tried to prepare supper. Max is terrified of birds. "For 45 minutes, I just sat and he clung, and I basically rocked him. Everything else just shuts down," she says. "Anything is a challenge on a daily basis."
Recently the same little boy was chasing a finch around the yard. The one constant with autism is unpredictability.
"For the first couple years at least, you're always aware, waiting for something to go wrong," says Rip. "Now we're used to that lifestyle. So it's not so much that you're waiting for something to go wrong, but in the back of your head, you always know that there's that possibility."
Lauren, who likes planning and structure, still struggles with the loss of control over her life.
"I've had to learn, I can't control anything, anymore. I wouldn't have chosen this for him, obviously. I couldn't control that. You just have to go with it and whatever the day brings, it brings and you try to deal with it.
"There are some days where you just sit down and cry."
Judy Milner wastes no time securing the front door after a visitor comes to her home. Failing to lock the deadbolt could open the door to tragedy for her autistic son.
Eric is nearing his 12th birthday -- a pre-teen who ordinarily would be tasting new freedom. But his mom can't risk it. "It's his life," she says.
Judy remembers several years ago when he disappeared in the dead of winter. The boy who loves to run and has absolutely no fear of traffic had wandered seven blocks from home before someone spotted a coatless little boy and called 9-1-1. As she thinks about the what-ifs years later, "it's just horrifying," Judy says.
At his mom's urging, Eric greets the visiting reporter with a "hello" that Judy helps interpret. Eric has a few words in his repertoire and can string two to three together if he wants something, but is mostly non-verbal. Still, he can make a point. A few minutes later, the mild-mannered boy dressed in soft gray sweatpants (highly sensitive to texture, he refuses to wear anything else) gets up from watching television, gently takes hold of his mother's hand and urges her towards the door with the stranger. Then he reaches for the light switch, preferring darkness.
When it comes to her son, Judy often finds herself equally in the dark.
"You don't know what's going to set them off ... If you knew what made a good day, everyday would be a good day."
With the average child, you can explain and reason, she adds. Judy can't even be certain when he's sick.
"They can't tell you anything, so you're guessing ... That's the hardest thing for me," she says.
And as hard as it is to understand Eric, it's also difficult to make him understand. For a child who can be indifferent to the world around him, how do you explain personal space? Because he's so highly sensory, he loves to hug and touch. "If he does it to a stranger, it's all of a sudden inappropriate, but it's not inappropriate to him."
But Eric, who was born in Wisconsin where he had the advantage of accessing specialized autistic therapy at an early age, has come far in his 11 years. The boy who couldn't sit still for more than a minute as a young child now attends a Regina school program geared to children with special needs. He's more settled, better focused, able to listen and follow simple directions, and welcomes the occasional outing, although he still can't handle the lights and noise of a shopping mall. "I think he can control some of those inner conflicts more," says Judy.
His mother is amazed how he can find the smallest detail in a picture. He likes to play, especially with his teenage sister Natalya, and loves swimming. At the same time, he's largely indifferent to the concept of friends. He knows the alphabet, can print his name, and is starting to type on a computer -- even if he's hitting the keys to which he's directed. But he's clearly learning and sometimes there are surprises, like the day Eric, although too disruptive to sit at his desk, just decided to put cardboard pieces numbered one to 100 in order without any prompting.
"There are a lot of strengths they possess we're not aware of."
Just as there remain so many questions about autism, so too are there about the future for children like Isaac, Max and Eric.
"Honestly, I can't even let myself go there because then I would shut down. It's just too scary to think about," says Lauren Smith when asked if she thinks about Max's future.
Carla Webb has heard stories about the rare child who seems to fully recover.
"You think, gosh is my son going to be one of those? Am I going to find the magic combination of therapies ... That he's going to be one that just wakes up one day and says, 'I love you mommy,' for the very first time." As many things as Isaac says independently, that's one word he doesn't.
If that day never comes, his mother is also confident, "his life has more than enough purpose." Much like a puzzle, it just might take time for the full picture to emerge.
"He has a great life ahead of him -- we just have to figure out how he fits."
ILLUS: Colour Photo: Roy Antal, The Leader-Post / Carla Webb and son Isaac share a close moment. ; Colour Photo: Roy Antal, The Leader-Post / Judy Milner and her 11-year-old son, Eric, relax at home. ; Colour Photo: Roy Antal, The Leader-Post / Max Smith, 5, plays with Hayley Flegel, an autism camp worker. ;
_____________________________________________
__________________________________________
From: http://www.24dash.com/printNews/47/28946.htm
Call for Commons debate on autism
Publisher: Pam Caulfield
Published: 26/10/2007 - 12:26:14 PM
Autism Awareness Campaign UK has written to Ed Balls
Autism campaigners have called for a full and comprehensive debate on children and special educational needs in the House of Commons, in the Palace of Westminster.
Ivan Corea head of the Autism Awareness Campaign UK has written to Ed Balls, Secretary of State for Children, Schools & Families and Shadow Children\'s Secretary Michael Gove of Her Majesty\'s Opposition, urging them to debate the serious education issues concerned with special educational needs.
Ivan Corea said: "Parents, carers and children with special educational needs are going through a great deal of suffering. Some councils are witholding SEN statements thereby denying the services children with SEN need.
"Prime Minister Gordon Brown and Children\'s Secretary Ed Balls have promised a world class education for all - children with autism and Asperger\'s Syndrome are being denied a world class education because of the lack of resources, lack of training for teachers and classroom assistants.
"We also need autism units in mainstream schools and specialist autism schools."
The autism campaigner recently met with Dr.Vincent Cable, acting leader of the Liberal Democrats in the House of Commons who pledged to do more for autism and Asperger\'s Syndrome.
Support for the call for a full debate on children and special educational needs has come from Dame Stephanie Shirley, Chair of the Shirley Foundation and Autism Speaks UK, The Chair and Chief Executive of The Disabilities Trust and other organisations and parents groups across the United Kingdom.
Parents have also expressed concern that special schools have been closed at an alarming rate. Others have voiced their support for special schools to be transformed into SEN/Autism Academies under the Government\'s Academy Program.
Lee Scott MP who has been championing the cause of autism in the House of Commons is proposing to introduce an Autism Bill in parliament calling for ring fenced funding for autism services.
Don\'t miss the 24dash.com audio bulletins for the latest news and information - http://www.24dash.com/podcasts
___________________________
BBC News
Campaign tackles autism ignorance
A campaign aimed at increasing public awareness of autism has been launched after research showed widespread misconceptions about the condition.
An estimated 50,000 people in Scotland have autism, which can affect how they communicate with and relate to others.
A survey by the National Autistic Society found many people were unaware of the severity of the condition, or believed it affected only children.
The society hopes its Think Differently campaign will increase understanding.
The survey found that 92% of people were unaware of how common autism and the related Asperger syndrome are, while a third of those questioned believed that all autistic people had special gifts, like Dustin Hoffman's character in the movie Rainman, when it is actually only one in every 200.
A third of people surveyed also said they believed the life-long developmental disability only affects children.
We find that parents are often subjected to hostility from the general public simply because of a lack of understanding
Robert Moffat
National Autistic Society
Robert Moffat, a regional officer with the National Autistic Society in Scotland, said ignorance about autism often devastated the lives of those born with the condition and their carers.
He added: "We find that parents are often subjected to hostility from the general public simply because of a lack of understanding. I know of parents who have been on the receiving end of this hostile reaction in supermarkets.
"What we find is that people will look at a child who is perhaps having some difficulties or a tantrum in a supermarket and they will act in an extremely judgemental and negative way towards this.
"We have found that there are a number of misconceptions out there so the campaign is aimed at trying to rebut these misconceptions."
Mr Moffat said part of the problem was the wide spectrum of different conditions linked to autism, which means each individual autistic person's condition is different.
Support quest
Parent Norman Gray said his 28-year-old son Andrew's life had been a "misery" until he was eventually diagnosed with autism nine years ago.
Mr Gray added: "When Andrew was very young they said there was something wrong with him but they didn't know what it was.
"He was then treated as a person with learning difficulties but not specifically autism and therefore there was no means of gearing any education towards his needs."
He was spat upon and pushed and jostled. If that didn't happen he was shunned by others
Norman Gray
Parent
Mr Gray said Andrew started off in mainstream schooling, where he was subjected to constant bullying, before being moved into special units which were not dedicated to autism itself.
He recalled: "Andrew had a miserable life in terms of his peers. For example, we would put him to school for 8.30 in the morning and we got punishment exercises back home for him being late into registration.
"What had been happening was Andrew had been bullied and was taking alternative routes to get to registration or wasn't even going to registration to avoid the bullies.
"He was spat upon and pushed and jostled. If that didn't happen he was shunned by others because he was odd and different and they wouldn't relate and play with him in the normal way."
Mr Gray said his son's life had been transformed when he was finally diagnosed with autism at the age of 19.
"When he was diagnosed we were then able to able to access the support of the National Autistic Society itself," Mr Gray said.
"He was also then able to join a local disabled swimming club, the Discovery swimming club, and that opened a whole new life up for him."
Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/2/hi/uk_news/scotland/7067517.stm
Published: 2007/10/29 12:34:49 GMT
Google Alert
Autism screening urged for toddlers by age 2
Pediatricians group says early therapy can lessen disorder’s severity
The Associated Press
updated 8:10 a.m. ET, Mon., Oct. 29, 2007
CHICAGO - The country’s leading pediatricians group is making its strongest push yet to have all children screened for autism twice by age 2, warning of symptoms such as babies who don’t babble at 9 months and 1-year-olds who don’t point to toys.
The advice is meant to help both parents and doctors spot autism sooner. There is no cure for the disorder, but experts say that early therapy can lessen its severity.
Symptoms to watch for and the call for early screening come in two new reports. They are being released by the American Academy of Pediatrics on Monday at its annual meeting in San Francisco and will appear in the November issue of the journal Pediatrics and on the group’s Web site.
The reports list numerous warning signs, such as a 4-month-old not smiling at the sound of Mom or Dad’s voice, or the loss of language or social skills at any age.
Increasing worries
Experts say one in 150 U.S. children have the troubling developmental disorder.
“Parents come into your office now saying ‘I’m worried about autism.’ Ten years ago, they didn’t know what it was,” said Dr. Chris Johnson of the University of Texas Health Science Center in San Antonio. She co-authored the reports.
The academy’s renewed effort reflects growing awareness since its first autism guidelines in 2001. A 2006 policy statement urged autism screening for all children at their regular doctor visits at age 18 months and 24 months.
The authors caution that not all children who display a few of these symptoms are autistic and they said parents shouldn’t overreact to quirky behavior.
Just because a child likes to line up toy cars or has temper tantrums “doesn’t mean you need to have concern, if they’re also interacting socially and also pretending with toys and communicating well,” said co-author Dr. Scott Myers, a neurodevelopmental pediatrician in Danville, Pa.
“With awareness comes concern when there doesn’t always need to be,” he said. “These resources will help educate the reader as to which things you really need to be concerned about.”
Another educational tool, a Web site that debuted in mid-October, offers dozens of video clips of autistic kids contrasted with unaffected children’s behavior. That Web site is sponsored by two nonprofit advocacy groups: Autism Speaks and First Signs. They hope the site will promote early diagnosis and treatment to help children with autism lead more normal lives.
The two new reports say children with suspected autism should start treatment even before a formal diagnosis. They also warn parents about the special diets and alternative treatments endorsed by celebrities, saying there’s no proof those work.
Therapy techniques
Recommended treatment should include at least 25 hours a week of intensive behavior-based therapy, including educational activities and speech therapy, according to the reports. They list several specific approaches that have been shown to help.
For very young children, therapy typically involves fun activities, such as bouncing balls back and forth or sharing toys to develop social skills; there is repeated praise for eye contact and other behavior autistic children often avoid.
Mary Grace Mauney, an 18-year-old high school senior from Lilburn, Ga., has a mild form of autism that wasn’t diagnosed until she was 9.
As a young girl, she didn’t smile, spoke in a very formal manner and began to repeat the last word or syllable of her sentences. She was prone to intense tantrums, but only outside school. There, she excelled and was in gifted classes.
“I took her to a therapist and they said she was just very sensitive and very intense and very creative,” said her mother, Maureen, 54.
Pediatricians should send such children for “early intervention as soon as you even think there’s a problem,” Johnson said.
Dr. Ruby Roy, a pediatrician with Loyola University Medical Center, who treats at least 20 autistic children, applauded the reports.
“This is a disorder that is often missed, especially when it’s mild, and the mild kids are the ones ... who can be helped the most,” Roy said.
Dr. Dirk Steinert, who treats children and adults at Columbia St. Mary’s clinic in suburban Milwaukee, said the push for early autism screening is important — but that it’s tough to squeeze it into a child’s regular wellness checkup.
Some pediatricians have tried scheduling a visit just to check for developmental problems, when children are 2½. The problem is that insurance doesn’t always cover these extra visits, Steinert said.
© 2007 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
URL: http://www.msnbc.msn.com/id/21515865/
________________________________________
Famous People with Autistic Traits.
http://puterakembara.org/archives8/00000054.shtml
An important repeat message
Federal Government Response to the Senate Report, “Pay Now or Pay
> Later.”
> Please find original copies of the federal response to the Senate
> attached. They are also posted on our website at:
> http://www.autismontario.com/client/aso/ao.nsf/web/
> National+Autism+Strategy?OpenDocument
>
> Special TVO television-web event explores autism, Sunday November 18,
> 2007
> TORONTO, Oct. 22 /CNW/ - According to Autism Society Canada, the
> number of school children with autism spectrum disorder has risen
> dramatically in recent years. On Sunday November 18 starting at 8 pm,
> TVO presents a special TV-web event on autism to help Ontarians gain
> deeper insight into a condition that affects about one in every 450
> Canadians.
>
> The evening begins with an in-depth documentary on the history of the
> condition and the latest research. Next up is a feature-length drama
> based on a true story of a couple's challenges trying to find help
for
> their autistic child. And immediately following the film, viewers can
> join a discussion with autism experts on Your Voice, both on air and
> online at tvoparents.com.
>
> The Autism Puzzle - NORTH AMERICAN PREMIERE
> 8 pm on TVO
> In The Autism Puzzle at 8 pm, filmmaker Saskia Baron brings personal
> insight to this historical examination of autism. Baron's older
> brother Timothy was one of the first kids in Britain to be diagnosed
> with the condition in 1961, a time when autism was largely
> misunderstood by doctors and the general public. The film asks, Is
> there an epidemic of autism today, or have awareness and even the
> definition of autism changed in the 60 years since the term was first
> coined? Is there any connection to the infant vaccination for
measles,
> mumps and rubella? The documentary also looks at current research
into
> cause, treatment and prevalence, and explores the latest experimental
> research into the autistic brain in Finland, England and America.
>
> After Thomas - NORTH AMERICAN PREMIERE
> 9 pm on TVO
> Following at 9 pm is the feature-length drama After Thomas. Inspired
> by a true story, this moving film depicts the struggles of a couple
to
> care for and communicate with their autistic child. Keeley Hawes and
> Ben Miles play the parents of six-year-old Kyle (Andrew Byrne), who
> can't communicate his fears. His mother Nicola has given up
everything
> to care for her only child, and her fierce determination to break
into
> Kyle's isolated world places an intolerable strain on her marriage.
> Into this setting comes Thomas, a golden retriever who opens the door
> to possibilities the family could have never imagined.
>
> Your Voice autism webcast discussion
> Live at approximately 10:30 pm at tvoparents.com and on TVO
> Rounding out the evening live at approximately 10:30 pm, Your Voice,
> TVO'S interactive parenting series at tvoparents.com, is online and
on
> air with a special edition on autism. Host Cheryl Jackson welcomes:
> - Wendy Roberts, a developmental pediatrician specializing in
> the treatment of autism at the Hospital for Sick Children in Toronto
> - Suzanne Lanthier, mother of an autistic child and
spokesperson
> for Autism Speaks, an advocacy group that focuses on awareness and
> fundraising
> - Audrey Meissner, director of Toronto's New Haven Learning
> Centre, a treatment facility for autistic children
>
> Viewers can submit questions about autism directly to the experts
> online at tvoparents.com, or by phone toll free at 1.888.891.1195.
>
> To view a clip of The Autism Puzzle and After Thomas, please visit
> TVO's November Media Highlights at
> www.newswire.ca/en/releases/mmnr/tvo/nov2007
>
> About TVO
> TVO is Ontario's public educational media organization and a trusted
> source of interactive educational content that informs, inspires and
> stimulates curiosity and thought. We are committed to empowering
> people to be engaged citizens of Ontario through educational media.
>
> News from CanadaHelps
> Great news! CanadaHelps now accepts gifts of securities online.
With
> the elimination of capital gains on donations of publicly traded
> securities last year, gifts of securities are now the most tax
> efficient way to make a charitable donation ... and a great way for
> donors to make a greater impact with their gift.
>
> It’s easy – both for donors and for charities. Once a donor has
> completed the online process and the shares have been sold, the donor
> receives their tax receipt and the charity receives the funds. It’s
> just that simple. To find out more about how it works, visit
> http://www.canadahelps.org/Help/Help.aspx?id=11.
>
> An email notification will be sent to you when a Gifts of Securities
> donation has been made to your charity and of course you’ll be able
to
> track these donations at any time by checking your CanadaHelps
> account.
>
> Be sure to let your donors know about this easy-to-use way of
giving.
> Here are a few quick suggestions on how:
> • Include the information in your next newsletter
> • Add the information to the front page of your website
> • Prepare a special bulletin and ask your board members to
> email it to their network
> • Inform your staff so they’re equipped to promote it through
> their daily work
>
> CanadaHelps is proud to be the first charity in Canada to accept
Gifts
> of Securities donations online. Welcome to giving made simple.
>
>
> Grandes nouvelles! CanaDon accepte maintenant des dons d’actions en
> ligne. Veuillez noter que le systčme de don d’action sur CanaDon.org
> sera disponible en français par la fin d’octobre.
>
> Avec l’élimination de l'impôt sur les gains en capital pour les dons
> d’actions l'année derničre, ces dons sont maintenant la maničre le
> plus attrayant de faire des dons pour grands nombres de donateurs.
>
> Grace au systčme de don d’action sur CanaDon.org, il est maintenant
> facile pour les donateurs et les organismes de bienfaisance de
prendre
> avantage de ce type de don. Quand la vente des actions est achevée,
le
> donateur recevra leur reçu aux fins de l’impôt, et votre organisme
> recevra le don par transfert électronique. Comme organisme de
> bienfaisance enregistré avec CanaDon, vous recevrez un courriel dčs
> qu’un don d’action est complété pour votre organisme, vous pouvez
> toujours accéder tous les détails du don dans votre compte CanaDon.
>
> Assurez-vous de promouvoir ŕ vos donateurs cette nouvelle méthode
> facile et efficace de donner en ligne. Des suggestions :
>
> • Inclure une annonce dans votre prochain bulletin
> • Ajouter l’information sur votre site web
> • Préparer une annonce spéciale et demander votre conseil
> d’administration de l’envoyer a leurs réseaux de contacts
> • Informer votre personnel
>
> CanaDon est fičre d’ętre le premier organisme de bienfaisance
Canadien
> d’offrir l’option de faire des dons d’action en ligne. C’est vraiment
> le don en toute simplicité.
PDF attached
From a Listmate
From: Interdisciplinary Council on Developmental and Learning Disorders [mailto:info@icdl.com]
Sent: Monday, October 29, 2007 7:46 PM
Subject: A Request From Dr. Stanley Greenspan
________________________________________
A Request From Dr. Stanley Greenspan
We are interested in identifying the main questions that parents and professionals have about Floortime and the DIR/Floortime approach. We are also interested in the main questions you may have about children's development and developmental challenges. We would appreciate it if you could provide us with these questions by clicking on the link below, and writing your question(s) in the boxes provided.
http://www.surveymonkey.com/s.aspx?sm=hqP4_2bF5J_2fKT2FmEjfD1KTQ_3d_3d
From a listmate
From CTV.ca
Who will care for disabled as they age?
Updated Tue. Oct. 30 2007 8:16 AM ET
The Canadian Press
FREDERICTON -- They have spent years crying for their children, fighting for their rights and pleading for help and understanding from often indifferent bureaucracies.
Now, as they head into their golden years, the parents of intellectually disabled children are confronted with a new and frightening question - what will happen to their sons and daughters when they are gone?
This generation of intellectually disabled men and women will outlive their parents, raising significant questions about how they will be cared for when their leading advocates in life are gone.
Advances in medicine and technology mean that people with disabilities, like everyone else, are living longer, healthier lives.
The congenital deformities and illnesses that used to kill many before they reached middle age now can be fixed, and it is not uncommon to find intellectually disabled people in their 40s, 50s and older.
"What is going to happen to them?" says advocate Mike Ross, whose 27-year-old daughter Martha has cognitive delays.
"While it's a panic situation for us, for governments the question is, should a 45-year-old who is healthy and aware be put into a large institutional nursing home? For me, the answer is no. It's not a good life. To warehouse those individuals - which is the cheapest way to do it - is wrong. It's just wrong."
Ross, executive director in Fredericton of a volunteer respite organization called OPAL Family Services, says the issue has to be a concern for politicians, bureaucrats and taxpayers.
He says that within the next 15 to 20 years, governments around the world, including in Canada, are going to have to shoulder the burden of caring for thousands who are left with no means of support and nowhere to turn.
"All parents of a son or daughter with an intellectual disability are either concerned if their child is 20 years old, worried if their child is 30 years old or scared to death if their child is 40 years old," he says.
"It's a reality many of us don't want to face."
Ann Passmore of Fredericton is one of those parents who feels time slipping away and knows her family must make preparations for the care of twin sons, John and David.
Born 38 years ago, John is in a wheelchair and has the intellectual capacity of a six-month-old child. David, who can walk, albeit unsteadily, is at the level of a two-year-old.
Passmore, 65, was told repeatedly when the boys were small that the best thing she could do would be to put them in an institution and walk away.
She believes she and her husband were among the first parents to buck that trend and keep their children with them, beginning a decades-long battle as defenders of the rights of the intellectually disabled.
It has taken a toll on the petite, fragile-looking Passmore, who had a breakdown in the early 1980s and had to be hospitalized for several days.
"There are crises that develop over years and nobody hears the first cry for help," she says. "And so, really we sink into a kind of silent despair where there is no help. That's where I went around the 1980s - I started to crash."
After pitched battles with bureaucracies concerning educational opportunities for John and David, the Passmores have spent years looking for acceptable special care homes and extended care facilities - both in very short supply in New Brunswick.
Her ideal for John and David would be assisted living arrangements in specially built homes under the umbrella of an organization like a nursing home.
She also hopes to see support networks of six or more people in place to act as advocates for each intellectually disabled person - a network that could take over once the parents die or become too feeble to carry the load by themselves.
"I know of some parents who are in their 70s and 80s and some of them have children who can take over and it's all planned," Passmore says.
"Some of them have no one, some are single parents and some children out there are already orphaned. I know of one case where a sibling took over care, but after six months, they couldn't cope."
Passmore and Ross say that some provinces, notably British Columbia and Ontario, appear to be slightly ahead of the curve in caring for aging, intellectually disabled people.
In provinces like New Brunswick, chronic underfunding of special care and extended care facilities by successive governments has created a looming crisis.
Cameron Crawford of Toronto, director of research for the Canadian Association for Community Living, says governments have to ante up.
"In decades past, that was the great appeal of the large, congregate care institutions," Crawford says.
"There was a significant commitment on the part of provincial authorities to fund those sorts of places. People don't want that now, but the corresponding positioning of fiscal resources for community options has not kept pace with demand. It means pulling money out of other places and very tough policy choices for governments."
Crawford says that leading-edge organizations in the provinces, such as the OPAL group in New Brunswick, are creating the kind of coalitions necessary to push the agenda forward for the intellectually disabled.
"The parents are making noise, but we're almost past making noise," Passmore says.
"We're exhausted. Some of them have had 65 and more years of almost 100 per cent care for their kids. The government hasn't heard us for 65 years. They have a lot of catching up to do."
LATE but if anyone got to view this, send me your input for the list
Two major media outlets will cover the new American Academy of Pediatrics (AAP) clinical reports on autism and the ASD video glossary recently launched by Autism Speaks, First Signs and Florida State University. The Monday, Oct. 29 edtion of CNN's "Larry King Live" will feature Dr. Ricki Robinson, Nancy Wiseman, Holly Robinson Peete, Gary Cole and Jon Schneider. Check local listings for airtimes.
On the Tuesday, Oct. 30, episode of "The Today Show," Matt Lauer will interview Autism Speaks Co-founder Bob Wright and Nancy Wiseman of First Signs at approximately 7:30 a.m. ET. Check your local listings for air times. Read more about the AAP reports and visit the glossary.
Google alert
Early Screening for Autism Recommended
by Abhishek Garg - October 30, 2007 - 0 comments
A group of pediatricians in US believe that kids must be screened universally for autism at least twice by the age of 2.
Doctors believe that the severity of the effect of autism can be reduced to a great extent if the detection is done at a very early stage. If this is not done, the disorder is very difficult to cure.
Autism is a complex developmental disorder which causes to severe disability and mental retardation. The basic recognizable symptoms of autism include: no babbling or pointing to toys by 12 months, no single words by 16 months, no two-word phrases by 24 months and loss of language or social skills at any age.
Although the specific causes of autism are unknown, many researchers suspect that autism results from genetically mediated vulnerabilities to environmental triggers. While there is disagreement about the magnitude, nature, and mechanisms for such environmental factors, researchers have found seven genes define prevalent among individuals diagnosed as autistic.
According to Dr. Scott Myers, a specialist in neurodevelopment, "If you recognize it earlier, you get them into treatment earlier."
"Kids who start (treatment) earlier do better in the long run," Myers said. He has done work in writing clinical reports designed to help pediatricians identify and manage autism.
Experts say one in 150 U.S. children have the troubling developmental disorder or an autism spectrum disorder whereas according to Autism Society Canada, the figure is about one in 165 children.
The reports insist on a need for universal screening of babies at the regular 18- and 24-month check-ups, irrespective of the fact that the symptoms are there or not. The guidelines framed also state that if the parents feel that the child is showing some specific symptoms, they should immediately start the treatment and not wait for the specialist diagnosis.
"You can begin with therapy geared toward the impairments that are there," Myers said.
Parents of the children, who have already been infected, have welcomed this step. "If we got the diagnosis sooner I think he'd be further ahead,'' said David Hrybinsky, the president of the Toronto chapter of Autism Ontario, and parent of autistic son Matthew, who was diagnosed at the age of 3.
According to Myers not only the new cases will be detected in time but these steps will also help the existing patients.
"In the milder forms, it may not be possible to diagnose early," Myers said. "It is not hopeless by any means if it is diagnosed later but there does seem to be an advantage to getting intervention going as early as we can."
The reports also mention the recommended treatments for autism which should include at least 25 hours a week of intensive behavior-based therapy, including educational activities and speech therapy.
For very young children, therapy typically involves fun activities, such as bouncing balls back and forth or sharing toys to develop social skills, eye contact and other behavioral therapies to increase the interaction of the child with others, which they normally avoid when suffering from autism.
Globe Life Health
Google Alert
Autism groups support earlier screening
UNNATI GANDHI
From Tuesday's Globe and Mail
October 30, 2007 at 4:59 AM EDT
Canadian autism groups are putting their weight behind an American call for universal screening for the disorder, but pediatricians here are wary of the realistic benefits of doing so.
The split comes as the American Academy of Pediatrics at its annual meeting in San Francisco yesterday made its strongest push to date to screen every child twice for autism by the age of 2, warning of symptoms such as failure to babble at nine months and one-year-olds who don't point to toys.
The advice is meant to help both parents and doctors spot the disorder sooner. And while there is no cure, experts say that early therapy can lessen its severity.
"Absolutely, we need a screening procedure in place," said Margaret Spoelstra, executive director of Autism Ontario, adding there is currently no standard screening practice in place in Canada. "To screen means that we're simply casting the net more widely in order to determine who might have autism out there. For us, it's better to have some false positives than to miss kids."
But too many false positives is precisely where the problem lies in practice, according to a leading Montreal pediatrician, because that would overload a system that is already strained.
Going from a screening to therapy requires a multidisciplinary team of specialists who can properly diagnose the disorder, said Emmett Francoeur, director of the child development program at the Montreal Children's Hospital and former president of the Canadian Paediatric Society.
But the waiting list for such an evaluation is as long as a year in some parts of Canada.
"We know that the earlier you diagnose them, the better the outcome. That we're pretty sure of," he said last night. "Unfortunately, unlike a broken bone or pneumonia, where you can take an X-ray and come up with a diagnosis, it takes multiple observers looking at multiple aspects of a child's development to diagnose autism."
So, he said, if screening were to be increased, that would mean an increase in the number of evaluation teams and the amount of services for treatment - all of which are not currently feasible.
"Should all of this be done? I think so, if you're talking about the moral aspects of trying to help every possible child who has autism," Dr. Francoeur said. "Can it be done? It's a really tough question because the governments have to decide where to put all their money."
As for screening, Dr. Francoeur stressed that there are several methods that are used, but only a few are accurate enough to warrant widespread promotion.
The two American Academy of Pediatrics reports, which will appear in the November issue of the journal Pediatrics, list numerous warning signs, such as a four-month-old not smiling at the sound of mom or dad's voice, or the loss of language or social skills at any age.
The academy's renewed effort reflects growing awareness since its first autism guidelines in 2001. A 2006 policy statement urged autism screening for all children at their regular doctor visits at 18 months and 24 months.
The authors caution that not all children who display a few of these symptoms are autistic and they said parents shouldn't overreact to quirky behaviour.
The new reports say children with suspected autism should start treatment even before a formal diagnosis. They also warn parents about the special diets and alternative treatments endorsed by celebrities, saying there's no proof that those work.
With a report from Associated Press
New Feature: Recommend this article to other Globe readers!
From A Listmate
Few Surprises But Several New Faces In McGuinty Cabinet
Tuesday October 30, 2007
CityNews.ca Staff
There weren't many surprises in the new cabinet announced Tuesday by Premier Dalton McGuinty - but there were at least a few that might have raised some eyebrows.
As expected, Dwight Duncan took over the prestigious post of Finance Minister, vacated last week in a surprise move by Greg Sorbara. And Michael Bryant, does, in fact, shift from Attorney General to look after Aboriginal Affairs, inheriting the thorny issue of the Caledonia standoff that will head into its second year this February.
Chris Bentley shifts to the busy Attorney General profile. And both Kathleen Wynne and George Smitherman retained their high profile Education and Health portfolios.
But what most weren't expecting were the political novices and names you may never have heard of that were elevated to new heights by the Liberal boss. Take Scarborough's Margarett Best, who replaces Jim Watson as Health Promotion Minister. The previous occupant of that post, Jim Watson, has a new home at Municipal Affairs and Housing - and as such will become a pivotal player in the ongoing dance between Toronto and the quest for city funding.
The relatively unknown Deb Matthews takes over as Minister of Children and Youth Services, where she'll face angry parents over the autism funding issue. And John Milloy of Kitchener will now hear from students about tuition freezes as the man in charge of Training, Colleges and Universities.
And there are plenty of GTA reps in the pack. Scarborough's Brad Duguid, a former city councillor, is the new Labour Minister and Mississauga's Peter Fonseca takes a tour at Tourism. But Monte Kwinter loses out as Public Safety Minister while Donna Cansfield gets transported from transportation to Natural Resources.
"Premier McGuinty was signalling he wants an activist government by keeping his core experience in place from the first term and bringing in the energy and talent of some people who are promoted to cabinet for the first time," explains a Liberal source.
McGuinty himself will be doing double duty, taking on the post of Minister Intergovernmental Affairs - putting him right in the middle of the war with the feds for more money for Ontario.
New McGuinty Cabinet
Aboriginal Affairs: Michael Bryant (Attorney General)
Agriculture, Food and Rural Affairs: Leona Dombrowsky
Attorney General: Chris Bentley (Training, Colleges and Universities)
Children and Youth Services: Deb Matthews
Citizenship and Immigration: Michael Chan (Revenue)
Community and Social Services: Madeleine Meilleur
Community Safety and Correctional Services: Rick Bartolucci (Northern Development and Mines)
Culture: Aileen Carroll
Economic Development and Trade: Sandra Pupatello
Education: Kathleen Wynne
Energy: Gerry Phillips (Government Services)
Environment: John Gerretsen (Municipal Affairs and Housing)
Finance: Dwight Duncan (Energy)
Government Services: Ted McMeekin
Health and Long-Term Care: George Smitherman
Health Promotion: Margarett Best
Intergovernmental Affairs: Premier Dalton McGuinty
Labour: Brad Duguid
Municipal Affairs and Housing: Jim Watson (Health Promotion)
Natural Resources: Donna Cansfield (Transportation)
Northern Development and Mines: Michael Gravelle
Public Infrastructure Renewal: David Caplan
Research and Innovation: John Wilkinson
Revenue: Monique Smith
Small Business and Entrepreneurship: Harinder Takhar
Tourism: Peter Fonseca
Training, Colleges and Universities: John Milloy
Transportation: Jim Bradley (Tourism)
Bounced from cabinet: Laurel Broten (Environment); Monte Kwinter (Community Safety and Correctional Services); Steve Peters (Labour); David Ramsay (Natural Resources)
The New Minister of Children and Youth Services
For Ontario
The Honourable Deb Matthews M.P.P.
Deb Matthews was elected to the Ontario legislature in 2003 and re-elected in 2007. Matthews previously served as Parliamentary Assistant to the Minister of Community and Social Services and Minister Responsible for Women’s Issues. Her previous political experience includes co-chairing the provincial Liberal campaigns in 1987 and 1995 and serving as the president of the Ontario Liberal Party from 2003 to 2006.
Matthews has been involved in a wide range of community organizations, serving on the boards of Orchestra London, the Thames Valley Children’s Centre, as board member and president of the Big Sisters of London and on London advisory boards for the Salvation Army and the Canadian National Institute for the Blind.
Matthews’ work on social assistance reform, including her Ontario Works report, has received strong support from a wide range of community leaders. She was recognized in the 2007 Ontario Budget speech as having been a driving force behind the new Ontario Child Benefit. Matthews received the 2007 Political Award of Merit from The Social Work Doctors’ Colloquium, given to an individual who in their political, professional and social life, practises and exemplifies the values of the social work profession including the fight for social justice.
Her diverse work background includes business experience in the construction industry, fundraising in the non-profit sector and teaching at the University of Western Ontario. She served as the 1995-96 fundraising co-ordinator for the Boys and Girls Club of London. The University of Western Ontario has twice honoured her with a place on the University Students’ Council Teaching Honour Roll.
Matthews was born in London North Centre and studied at the University of Western Ontario, where she completed her PhD in social demography. She has three children.
Google alert
From a Listmate
October 30, 2007 CTV - CANADA AM
TIME: 07:19:00 ET
US group urges screening of all kids under two for autism
O'REGAN: Autism affects one in every 165 children in Canada. It often goes unnoticed until the child is older. Now, a US group of pediatricians is urging all children to be screened for autism at least twice before turning two. And some Canadian doctors agree.
Joining us now from Edmonton to talk about what to look for is University of Alberta autism researcher Dr. Lonnie Zwaigenbaum.
Thank you very much, Lonnie, for joining us.
ZWAIGENBAUM: Good morning, Seamus.
O'REGAN: What are some of the signs that specialists look for in children -- you know, signs of autism?
ZWAIGENBAUM: Some of the earliest signs of autism are children who are not making eye contact, are not responding when their name is called, are not sharing their enjoyment by smiling at their parents and trying to direct their attention to toys they're playing with, having unusual interest in toys, like only examining them rather than playing with them, and delays in language development, or loss of language skills, at any stage.
O'REGAN: So, obviously, just because a child displays some of these signs does not automatically mean that they're autistic?
ZWAIGENBAUM: That's right. I think one of the really nice things about these guidelines that are being recommended by this US group is that it places monitoring for early signs as part of an overall approach of monitoring children's development and really emphasizes the central role that community physicians have in following children and monitoring their development.
O'REGAN: Now, there is no cure for autism. So, what are the benefits of an early diagnosis?
ZWAIGENBAUM: Well, there's no question that detecting and diagnosing autism earlier provides an opportunity for children to start specialized interventions at an earlier stage. And this opens up a whole world of opportunity for these children to learn and progress and really reach their full potential.
O'REGAN: In Canada, the family doctor is the child's primary caregiver. But in the United States I understand it's different. You know, it's a pediatrician. So, our family doctors, are they trained right now to look for those early signs of autism?
ZWAIGENBAUM: You know, there's certainly greater dialogue and a lot more teaching around early signs of autism. I think we still have a long way to go in terms of bringing all the community healthcare providers, which would include pediatricians, would also include public healthcare nurses and clinical nurse practitioners, all of this group of healthcare professionals who looks after children, to make sure they are aware of the early signs of autism, to really respond to the concerns of parents and make sure that children are connected with intervention as early as possible.
O'REGAN: Now, there are some pediatricians who are a bit concerned about these guidelines, as I understand it. I was reading in the Globe today about Dr. Emmett Francoeur from the Montreal Children's Hospital, saying that what he's concerned about is overloading the system that is already strained with waiting lists of up to a year. Overloading with false positives, with I guess children who display some signs but who aren't autistic.
ZWAIGENBAUM: Well, I certainly respect his comments. I think it's really important to emphasize that screening isn't equivalent to a diagnosis. And really, screening just opens up a dialogue, identifies children who are at higher risk and who are in need for further attention.
From my perspective, these guidelines really encourage all of us to step up to the plate, really encourage parents to be aware of the early signs and be really persistent with their concerns. It encourages healthcare providers to know the signs, to be aware of these screening tools and how to access appropriate assessment and intervention services.
And I think it really encourages the healthcare system to step up to the plate, including policymakers, to be aware that there are some children with autism who can be diagnosed at an early stage, and make sure that these children can have timely access to interventions that are both appropriate for their developmental stage but also specific to their needs as individuals with autism.
O'REGAN: And at the end of the day, too, I mean, in order to go from screening to therapy really requires a multidisciplinary approach, a team of specialists. We need to make sure that the resources are there. I mean, that is, at the end of the day, the biggest concern, correct?
ZWAIGENBAUM: Absolutely. I think that when we identify these early signs and respond to parents' concerns I think children can also benefit from other intervention services in their communities -- preschool intervention, working with a speech and language therapist and so on.
I think that these guidelines really encourage that this should be a continuous process. It's not just about screening at one point in time, but it's about listening to parents' concerns, being aware of the early signs of autism, and making sure that we support these children and families at the earliest stage possible.
O'REGAN: Dr. Zwaigenbaum, thank you very much.
ZWAIGENBAUM: Okay, thank you.
Dr. Lonnie Zwaigenbaum, Autism Researcher, University of Alberta
The NEW Cabinet
http://www.premier.gov.on.ca/team/Cabinet.asp
KidsAbility Seminar
From a Listmate;
Hello,
>
> I thought this might be useful to some of you or to people you know.
> I imagine that much of the material could be applied to older adults
with
> autism, as well as young adults and children.
> Please post this or pass it on.
>
> Best to all,
>
> Nancy Miles
>
>
See attached pdf
From a listmate
Addressing Autism
How school districts can improve prospects for students with autism.
By Leslie Werstein Hann
October 2007
AS THE FASTEST GROWING DEVEL-opmental disability, autism presents one of the greatest special education challenges facing school districts today. In February, the U.S. Centers for Disease Control released data showing that about 1 child in 150 has a form of autism, when previous estimates put the figure at 4 or 5 per 10,000. According to the U.S. Department of Education, the number of children age 3 to 21 in federally supported programs for autism increased from 22,000 in the 1993-1994 school year to 223,000 in 2005-2006.
Autism is a complex brain disorder characterized by difficulties interacting with people and communicating verbally and nonverbally. People with autism also exhibit repetitive behaviors and interests, and they may have unusual responses to sensory xperiences, such as the way something looks or sounds. The barely audible buzz of a fluorescent light just beginning to flicker might cause ear-splitting pain for a child with autism. Its various forms, including Asperger syndrome and autistic disorder, are known broadly as autism spectrum disorders (ASD), though autism is often used as an umbrella term.
Among the most important characteristics of autism, and one that creates a great challenge for schools, is that it is so different for every person. While there are specific techniques that are known to be effective, one teaching methodology is not appropriate for all children with ASD. In addition, children with autism require services at home and in the community to help them "generalize" what they learn in school to other settings. Children with ASD may also need speech, occupational, behavioral and other therapies.
"Superintendents and school business offi cials need to understand there's no way to shortcut these services for these children," says Catherine Conrado, administrative director of special services for the Lodi Unified School District in California's Central Valley region, about 90 miles east of San Francisco. "They are high cost and high intensity, and you need to be able to budget for that because there's no way we get enough from state and federal sources."
Explosive growth in autism cases is often attributed to better diagnosis and a wider range of disorders characterized as ASD rather than a true increase in prevalence over the past decade. Faced with legislative mandates, parental demands, the threat of litigation, limited fi nancial resources and a rapid flow of information-and controversy-about treatments and instructional strategies, district administrators are struggling to find the best way to improve the prospects for their students with autism.
Pivitol Role of Education
The primary treatment for autism is education, and the earlier it starts the more likely it is to produce a positive outcome. In its 2001 book Educating Children with Autism, a committee of the National Research Council explored various treatments and instructional models and laid out the elements of effective education programs. But it also commented on the disconnect between the quality of model programs and the reality of most publicly funded early education programs..
Six years later, the quality of services offered by public schools has improved greatly for children with autism, says Kathy Savage, who coordinates autism programs for Plano Independent School District in suburban Dallas. However, she adds, "the more we know the more we realize how much we still don't really know."
Before working in affluent Plano, which has about 500 children with ASD among its 53,000 students, Savage worked in a large, urban district in Texas and before that a regional center that served rural and smaller suburban districts. Sometimes school administrators in other districts will state categorically "that 'we do it this way,' thinking there's one right way to do things," Savage says. By contrast, "we never want to say we are the best we can be. We always ask, What more can we do for this child to help him meet his full potential?"
Bryna Siegel, director of the Autism Clinic at the University of California-San Francisco, consults with many district administrators. She laments the fact that many administrators are satisfied to create a legally defensible program, rather than striving to provide individualized programs that help each child make the best possible progress that will be meaningful for that child's future. Part of the problem, Siegel believes, lies in unrealistic expectations of some upwardly mobile parents. She urges administrators to "make sure they give parents accurate information about what to expect in their children's development" and to ensure that educational goals on the individualized education program (IEP) consider the child's prognosis. "If educational administrators don't bite the bullet and tell the parent what's really happening, pretty soon it turns around and bites them," Siegel says.
"Not only have we ended up providing a higher quality of education, but we are doing it at asubstantial savings." Carolyn McGuffog, director of educational services, Pleasantville (N.Y.) Union Free School District
Pleasantville Union Free School District
The Pleasantville Union Free School District in Westchester County, N.Y., always had a reputation for providing high quality special education services, especially for children with learning disabilities. Until a few years ago, however, the district was incapable of serving its growing population of children with autism-related disorders. Like many small districts, pleasantville, which serves 1,800 K12 students, was paying mightily-well over $65,000 in tuition, transportation and other service costs- to educate each student with autism at an out-of-district program run by the local educational services cooperative, BOCES, or Board of Cooperative Educational Services.
But parents began insisting that their children be able to attend the local school, especially since many of them were doing well in mainstream preschool classes with the support of a special education teacher. The Individuals with Disabilities Education Act requires schools to provide a free, appropriate education in the "least restrictive environment," so Pleasantville district leaders gave it a try. Th e program started in 2003 with two children; the following year, four more autistic children entered kindergarten at Bedford Road School, the district's elementary school. Pleasantville uses three mnodels-full mainstreaming with classroom aides, pullouts for direct instruction, and selfcontained classrooms-to educate more than 15 children in the elementary school. Th is year, the district hired a specialist to work with families and another teacher to support close to 10 children with autism in its middle and high schools, providing direct instruction for those who need it. Older students also receive job coaching and community-based instruction, an important but often overlooked component to help them transition into life after high school.
Now three years later, Pleasantville's autism program is very well regarded, enough so that it was recently listed as a selling point in a real estate ad for a high priced house. Key elements of the district's success include its willingness to budget for experienced staff and the flexibility to adapt the program to the changing needs of the individual children being served.
"We have demonstrated that not only have we ended up providing a higher quality of education," says Carolyn McGuffog, the district's director of educational services, "but we are doing it at a substantial cost savings for the district.
"I'm very proud of what we're doing," McGuffog adds, "but I'm anxious for other districts to do it too."
Mainstreaming Trend
While some children with autism attend special schools-both public and private- the prevailing winds are defi nitely blowing in the other direction. "There are and have been special schools for autism because the behaviors can be so challenging and there's such a great push for specialized approaches," says Linda Hickson, director of the Center for Opportunities and Outcomes for People with Disabilities at Columbia University's Teachers College in New York. "But the trend is toward serving more children in-district, and the challenge for district administrators is fi nding how best to serve children in their regular schools so they can be there with their peers."
The decision on when a child is best served in the home district or outside depends on the circumstance. "My question in every meeting with parents and teachers is, What are the child's characteristics? What does he or she need to learn, and where can the child best be taught that information?" says Brenda Smith Myles, chief of programs and development at the Ohio Center for Autism and Low Incidence, a federally funded information clearinghouse under the Ohio Department of Education, Office for Exceptional Children. "In most cases, public schools should be able to provide that."
Even as the trend is toward mainstreaming, new specialized autism programs are opening. In August, the Florida Autism Center of Excellence, a charter school, opened its doors in tampa.The school aims to serve up to 200 students, ages 3 to 22, with individualized programs based on research-based instructional strategies. "We've really been able to tap into the research out there on the best practices for educating students with autism," says Shannon Moss, behavior analyst program director. The 140-acre campus includes game rooms, computer labs, horse stables, a gym, basketball courts and a boathouse with anoes. Older students can also learn job skills at a campus snack bar and store, says Marc Lavett, executive director.
FACE, the first charter school of its kind in Florida, received $700,000 in seed money from the Florida Department of Education. It is managed by Educational Services of America, which runs more than 120 special education and alternative schools, including 38 private schools in Florida.
Fundamentals for Success
Educating Children with Autism sets out these fundamentals for successful educational programs: early entry into an intervention program; active engagement in intensive istructional programming for a full school day for at least five days a week with full-year programming; use of planned teaching opportunities organized around brief periods of time for the youngest children; and sufficient amounts of adult attention in one-to-one or very small group settings to meet individualized goals.
Even though there is consensus about the necessary elements for a successful autism program, many districts have difficulty translating ideas into action. One reason is the dearth of teachers prepared to work with children who have ASD. Special education and general education teachers without that experience misinterpret the behaviors that children with autism exhibit and don't know how to apply the necessary interventions in the classroom.
"Most professionals don't truly know what autism is, and if they don't they tend to think the behavior is willful disobedience," says Brenda Smith Myles, chief of programs and development at the Ohio Center for Autism and Low Incidence. "They do not know that children with autism spectrum disorders don't have within them that automatic mechanism to calm themselves down. They don't understand that children with autism have social poblems. Also, teachers largely don't understand the sensory challenges of our kids. People don't understand that the underlying characteristics of children with autism have an impact on their dayto-day performance."
Multiple Approaches
There's also a great deal of confusion about which approaches and interventions to use, says Hickson. As a consequence, districts may rely on one strategy-often based on the well-researched and wellentrenched applied behavioral analysis theory (ABA)- to the exclusion of other promising approaches.
ABA is the basis for intensive instruction and behavior-management treatments designed to reinforce wanted behaviors and reduce unwanted behaviors. A common application of ABA theory is discrete trial training, an intensive approach in which children often work one on one with a teacher for 30 to 40 hours a week. Tasks are broken down into small subskills taught through repeated practice. Rewards are used to reinforce positive behaviors.
"District administrators should join with parents in setting criteria for which approaches to include," Hickson says. "My advice would be to offer more than one approach, as long as they are research based, to give parents options."
The understandable challenge, Hickson says, is that while some approaches are based on years of research, they may not have yet produced a wealth of evidence to support their use in the classroom. Citing just one of several worthwhile approaches, Hickson points to the work of UCLA's Connie Kasari and Marian Sigman on the effectiveness of targeted inrventions for joint attention and symbolic play, two core deficits in young children with autism. Hickson's goal is to introduce teachers and administrators to other promising research-based approaches. "ABA is essential, but it's not the be all and end all," Hickson says. "I think schools should continue to look at alternative approaches."
While there is no one-size-fits-all solution, autism experts inside and outside school districts nationwide point to features that distinguish successful public school programs.
Early Intervention
Everyone benefi ts when schools get involved early and work closely with families and the agencies that serve them. Early, intensive intervention can have long-lasting effects in a child's school years when it is focused on core deficits in autism, Hickson says. Th e first step is early diagnosis. Federally funded research published in July's Archives of General Psychiatry found that about half of children with ASD can be diagnosed soon after their first birthday. Autism disorders usually can be reliably detected by age 3, though it is estimated that only 50 percent of children are diagnosed before kindergarten, according to the National Institute of Mental Health.
Siegel urges school administrators to work closely with the local organization responsible for providing services for children from birth up to age 3. The goal should be seamless, cordinated services that extend from the time the child is diagnosed through the transition to adulthood. In an ideal situation, Siegel says, the neighborhood school becomes the early services provider.
The Lodi Unified School District has a close working relationship with the medical community and the state-funded social services agency that provides early intervention services, and it continues to provide home services when children with ASD are in school.
Among the most important characteristics of autism, and one that creates a great challenge for schools, is that it is so different for every person.
"It's critical to have a good relationship with whatever entity serves the family, because you have to be giving the family similar information and you have to have similar goals for the child," Conrado says. "Schools can't do it alone, and the agencies can't do it alone."
Pleasantville hired a full-time staff person to address the continuity between the school and home and to provide community-based instruction one day a week after school. As a "family trainer," the primary job is working with parents and children to help carry over the skills learned in school to home. But by observing the child in class and meeting regularly with teachers and the speech and occupational therapists, she will "carry all the same strategies and techniques from school into the home," McGuffog says.
Districts with good programs have strong parent involvement and collaboration. "That may be one of the most important elements," Myles says.
Comprehensive Planning
Schools with successful autism programs do comprehensive educational planning, offer a range of educational opportunities, and ensure that individualized interventions are integrated into the child's daily program. Comprehensive planning begins with understanding the characteristics of autism in each child and matching the child's needs and strengths to researchbased strategies and interventions that have been proven to work. "We know our children need sensory supports, they need reinforcement, they need visual structure and supports, they need the task demands of their environment assessed to see what we are requiring of them, they need social and communication skills, and then, finally, they need generalization activities," Myles says. That might mean a trip to the secretary's office after a classroom lesson on asking for help. "One of the things our kids are famous for is learning a skill in one environment and not knowing how to use it elsewhere," she says.
Successful programs off er different models of instruction and different settings, depending on the needs of the child. They range from self-contained classrooms that provide structured teaching all day, to direct instruction for part of the day, to full inclusion with the help of an instructional aide.
Teachers need clear training and support in how to apply those interventions in the classroom. Sometimes teachers will learn a great strategy for helping children with ASD, Myles says, but they don't learn how to integrate it into a child's program. This is true in both inclusive and special education classrooms. She recommends that teachers have a one- to two-page document that describes exactly what supports the child's needs during each activity period, such as visual schedules; "priming," a technique that exposes children to assignments before their presentation in class; and "choice boards," which provide a visual display of options.
Hiring Specialists
Districts with successful autism programs also hire people with expertise and experience in dealing with ASD. Specialists are necessary not just to work one-on-one or in small groups with children, but they must be qualified to train and support special education and general education teachers-as well as school administrators- concerning the characteristics of autism. Support staff also should have prior experience working with people with autism or training if they don't.
In addition to specially trained teachers in structured classrooms, a roving autism teacher provides support for administrators, general and special ed teachers, and instructional aides who help ASD children in mainstream classes throughout the Lodi district, which serves almost 30,000 students. At the district level, three of the eight program specialists also have expertise in autism. They handle the most sensitive and complex IEP meetings and serve as Conrado's "training experts." They train teachers and principals and have relationships with the regional center that provides services to the families. "Principals need to understand the students as well so they don't discipline them improperly," Conrado says.
Successful districts also invest in continuing education for the autism professionals to keep them up-to-date on new research and strategies.
Thinking about Results
Districts with successful programs "begin with the end in mind," according to Myles. At the upper grades, that means providing functional training, from basic living skills-getting dressed, performing household tasks, and doing things safely-to supported employment. A district's ability to help a child with ASD transition to life outside of school may be the greatest testament to the success of its autism program, but today it still remains one of the greatest weaknesses for most districts, says Siegel.
In successful districts, the philosophy of "beginning with the end in mind" starts early. "If you have a first-grader, you don't think, 'What do I have to do to get this child through first grade?'" Myles says. "You ask, 'What does this child need in one year, in five years, in seven years?' so that the program is always focused on the future."
Within Reach
Districts like Lodi and Plano, Siegel says, demonstrate that successful programs for children with ASD are not beyond the reach of public schools when district administrators are committed to individualizing programs to meet the needs of children.
RESOURCES
Autism Society of America
www.autism-society.org
Autism Speaks
www.autismspeaks.org
Autism Education Network
www.autismeducation.net
Columbia University's Teachers College
Center for Opportunities and Outcomes
for People with Disabilities
www.tc.edu/oopd/about.htm
Council for Exceptional Children
www.cec.sped.org
DIR/Floor Time
www.fl oortime.org
Educating Children with Autism,
Committee on Educational Interventions
for Children with Autism,
National Research Council
books.nap.edu/catalog.php?record_
id=10017
Florida Autism Center of Excellence
(FACE)
www.faceprogram.org
Ohio Center for Autism and Low Incidence
(OCALI)
www.ocali.org
Pivotal Response Treatment
www.education.ucsb.edu/autism/
index.html
SCERTS
www.scerts.com
TEACCH Autism Program
www.teacch.com
"They have a good range of programs, they do a good job of including kids who can benefit from inclusion in a general education setting, and they do a good job with the kids who need to be working on a much more functional skills curriculum," she says. "It's not like they've done something exceptional and unusual. What they've done is good quality education, and it doesn't require six saintlike administrators all working 80 hours a week. They are good people doing a good job in a reasonable way. And there's no reason most school districts can't be like that."
Leslie Werstein Hann is a freelance writer in New Jersey.
http://www.districtadministration.com/viewarticle.aspx?articleid=1295&pf=1
from a listmate
Star
LETTER TO THE EDITOR
California a role model for autism treatment
Nov 01, 2007 04:30 AM
Doctors call for earlier screening
Oct. 29
In California, any child up to the age of 3 who shows any developmental deficit or vulnerability is given early and intensive intervention. This means any child – and a diagnosis is not necessary, eliminating the problem with the bottleneck from the wait for assessments, which can be as long as two years in Ontario. When children are 3, the intervention continues through a different mechanism in the school system and assessments are conducted.
As the mother of an 11-year-old boy with autism, I can attest to the difficult process for families to put in place the programs and services our children need. Lengthy waits for assessments are where it begins, and it continues on to the programming levels. Trying to get in to see a specialist for your child in Ontario is similar to trying to get in to see the Wizard of Oz.
While science continues to make important discoveries, publicly funded autism treatment in Ontario needs to catch up.
Taline Sagharian, Richmond Hill
From a listmate
From: Angela Garde
>Subject: New web content to complement TVO's TV-web autism event
>Date: Wed, 31 Oct 2007 14:42:12 -0400
>
>Hello,
>
>Earlier this month I contacted you to let you know about TVO¹s special
>TV-web event exploring autism, Sunday November 18. I¹ve included the
>details
>again further below for your reference.
>
>I wanted to also let you know a week prior to the event, on Monday
November
>12, TVO¹s parenting website, tvoparents.com, will offer special
>autism-related content, including articles on autism diagnosis,
various
>treatments and education as well as videoclips featuring perspectives
from
>four parents of autistic children. Visitors can also listen to a
podcast in
>which these parents describe their journeys and offer tips for other
>parents.
>
>We hope you¹ll share this information with your members and those on
your
>distribution lists.
>
>Kind regards,
>
>Angela Garde
>Marketing and Communications
>416.484.2600, ext 2305
>agarde@tvo.org
>www.tvo.org
>
>
>
>--------------------------------
>
>The Autism Puzzle ¬ NORTH AMERICAN PREMIERE
>Sunday November 18 at 8 pm on TVO
>
>In The Autism Puzzle at 8 pm, filmmaker Saskia Baron brings personal
>insight
>to this historical examination of autism. Baron's older brother
Timothy was
>one of the first kids in Britain to be diagnosed with the condition in
>1961,
>a time when autism was largely misunderstood by doctors and the
general
>public. The film asks, Is there an epidemic of autism today, or have
>awareness and even the definition of autism changed in the 60 years
since
>the term was first coined? Is there any connection to the infant
>vaccination
>for measles, mumps and rubella? The documentary also looks at current
>research into cause, treatment and prevalence, and explores the latest
>experimental research into the autistic brain in Finland, England and
>America.
>
>After Thomas ¬ NORTH AMERICAN PREMIERE
>Sunday November 18 at 9 pm on TVO
>
>Following at 9 pm is the feature-length drama After Thomas. Inspired
by a
>true story, this moving film depicts the struggles of a couple to care
for
>and communicate with their autistic child. Keeley Hawes and Ben Miles
play
>the parents of six-year-old Kyle (Andrew Byrne), who can't communicate
his
>fears. His mother Nicola has given up everything to care for her only
>child,
>and her fierce determination to break into Kyle's isolated world
places an
>intolerable strain on her marriage. Into this setting comes Thomas, a
>golden
>retriever who opens the door to possibilities the family could have
never
>imagined.
>
>Your Voice autism webcast discussion
>Sunday November 18 live at approximately 10:30 pm at tvoparents.com
and on
>TVO
>
>Rounding out the evening live at approximately 10:30 pm, Your Voice,
TVO¹S
>interactive parenting series at tvoparents.com, is online and on air
with a
>special edition on autism. Host Cheryl Jackson welcomes:
>- Wendy Roberts, a developmental pediatrician specializing in the
treatment
>of autism at the Hospital for Sick Children in Toronto
>- Suzanne Lanthier, mother of an autistic child and spokesperson for
Autism
>Speaks, an advocacy group that focuses on awareness and fundraising
>- Audrey Meissner, director of Toronto¹s New Haven Learning Centre, a
>treatment facility for autistic children
>Viewers can submit questions about autism directly to the experts
online at
>tvoparents.com, or by phone toll free at 1.888.891.1195.
>
>To view a clip of The Autism Puzzle and After Thomas, please visit
TVO¹s
>November Media Highlights at
www.newswire.ca/en/releases/mmnr/tvo/nov2007
>
>About TVO
>TVO is Ontario's public educational media organization and a trusted
source
>of interactive educational content that informs, inspires and
stimulates
>curiosity and thought. We are committed to empowering people to be
engaged
>citizens of Ontario through educational media.
>For more information, please contact TVO Communications:
>
>Media contacts:
>Angela Garde, 416.484.2600, ext. 2305, agarde@tvo.org
>Paul Ginis, 416.484.2600, ext. 2445, pginis@tvo.org
http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20071029/autism_pediatricians_071029/20071029?hub=CTVNewsAt11
U.S. pediatricians urge more autism screening
Updated Mon. Oct. 29 2007 8:01 PM ET
CTV.ca News Staff
Children should be screened for autism twice by the time they are two years old to look for symptoms such as babies who don't babble at nine months and one-year-olds who don't point to toys.
That's the advice from the American Academy of Pediatrics in two reports the group presented at its annual meeting in San Francisco Monday.
The advice is meant to help both parents and doctors spot autism sooner so that therapy can begin as soon as possible. While there is no cure for autism, experts say early therapy can lessen its severity.
The reports list numerous warning signs that are absolute indications for immediate evaluation. They include:
• no babbling or pointing or other gesture by 12 months;
• no single words by 16 months;
• no two-word spontaneous phrases by 24 months;
• loss of language or social skills at any age.
Earlier, subtle signs that that could lead to earlier diagnosis include:
• not turning when the parent says the baby's name;
• not turning to look when the parent points says, "Look at..." and not pointing themselves to show parents an interesting object or event;
• lack of back and forth babbling;
• smiling late; and
• failure to make eye contact with people.
The doctors also want to warn parents that not all children who display a few of the symptoms are autistic. They note that just because a child likes to line up toy cars or likes to repeatedly stroke a favourite stuffed animal doesn't mean they have the developmental disorder - especially if they're also interacting socially and also communicating well.
The American Academy of Pediatrics first issued guidelines about autism in 2001. A 2006 policy statement urged autism screening for all children at their regular doctor visits at age 18 months and 24 months.
The new reports advise intervention as soon as an autism diagnosis is seriously considered, rather than deferring until a definitive diagnosis is made.
Recommended treatment should include at least 25 hours a week of intensive behavior-based therapy, including educational activities and speech therapy, according to the reports.
The Academy lists several specific approaches that have been shown to help. They also list many that have not, including special diets and alternative treatments endorsed by celebrities, saying there's no proof those work.
Meanwhile, Canadian pediatricians are applauding the recommendations.
"I think it is absolutely essential to be watching children for early signs of autism so I think it is an excellent recommendation," says Dr. Wendy Roberts, the director of the Child Development Centre at Toronto's Hospital for Sick Children. "we are trying to teach all family physicians and pediatricians to look very carefully for the early signs of autism."
But autism experts note that many parents in Canada are already waiting years for therapy. They say screening earlier will only uncover more children who will need treatment.
"What are we going to do with all these children?" wonders Dr. Derrick MacFabe, director of the Kilee Patchell-Evans Autism Research Group at the University of Western Ontario. "How are we going to help them?"
The Autism Society of Canada estimates that one in every 165 children is born with an Autism Spectrum Disorder and that there are approximately 200,000 Canadians living with an ASD.
The cause or causes of autism are still unknown. Many possible causes are being investigated, such as genetics, environmental factors, viral infections and immune responses and deficiencies.
________________________________________
Comments are now closed for this story
Karen
We have a 6 years old grand daughter with autism. She was developing normally until around 2 1/2 years and then started to regress - loss of language, poor eye contact, no social skills. Her preschool noticed her regression and let us know but we had to wait 8 months before she could be properly diagnosed at Sunny Hill so we could start her program. She lost 8 months of treatment due to this delay. As stated in the article - early intervention is key to helping children with autism.
lou
More important is finding a cause for this epidemic. My nephew was normal until age 2.5 then descended into a world of insanity before our family's eyes.
Debi
We have a 10 year old daughter with Autsm. Although early screening for Autism is of utmost priority, it is also extremely important to not lose sight of other medical conditions that child might have, including those that may or may not be more prevalent in the Autistic population. Some other medical condition the child might have may be exacerbating the Autistic symptoms. Although early screening for Autism itself is important, so too is the big picture of the child's overall well being.
Dave
Saskatchewan is so far behind with autism. My grandson is over 3 years old, he barely speaks, still wears pampers, does not answer when you call his name. His mother has been told it is a 1 -2 year wait to get him to a specialist to have him properly diagnosed.By then he will be 5.
From a listmate
Star
LETTER TO THE EDITOR
Woman's death brings questions to surface
Nov 02, 2007 04:30 AM
Autistic victim found in `filthy' area,
court told
Oct. 31
After recently enduring more groundless claims of inclusion here in Ontario, along with reading about huge cash infusions by government, we are witnessing the real deal in the death of Tiffany Pinckney. Unless an individual with additional needs has loved ones who are able to love, care, teach and fight for them, they are endangered.
Families across Ontario know that government personnel neither have to care, be knowledgeable, know how to teach or even adhere to legislation. Worse still, they will be believed as credible witnesses even when their claims are not supported by any credible action.
Individuals and families are watching this case very closely. They have been asking what's so special about the educational programs classified as "special" for decades. The gaps and omissions of proof in the claims of government personnel are a testimonial to the true nature of the provision of "special" education programs, supports and services in this province.
Whatever is further revealed and decided, this case is not just about the tragedy of the worst family breakdown; it's also an opportunity to question reality versus government rhetoric.
Where does all that money go?
Catherine Russell, Toronto
http://thechronicleherald.ca/Columnists/976025.html
Published: 2007-11-02
N.S. woman rewarded for driving autism awareness
JOEL JACOBSON Bright Spot
JACK NICKLAUS has six. Arnold Palmer and Tiger Woods each have four.
Now Jennifer Overton has a green jacket too.
Granted, Jennifer didn’t receive hers for winning the Master’s Golf Tournament in Augusta, Ga. But it probably holds more significance for her (except for the millions of dollars involved) than to the big-name golfers mentioned above.
Jennifer, a playwright and actor who lives in Hatchet Lake, was fitted with her jacket two weeks ago at the annual Autism Golf Ball in Halifax, a fundraiser to create awareness of the disorder. At least one in 166 people will be diagnosed with autism in their lifetimes.
She is the third recipient of the award, presented previously by the Provincial Autism Centre to Joan Craig of Halifax and Irene MacLeod of Antigonish, who, like Jennifer, have been instrumental in creating understanding and acceptance for those touched by autism.
"I’ve golfed once or twice in the last 20 years," says Jennifer. "At last year’s golf ball, I made a presentation so (husband) David and I didn’t get a lot of chance to play golf. This time we did."
The event raised close to $100,000 for the Autism Centre, as more than 300 people played very challenging miniature golf holes, drove, pitched and chipped, and were wined, dined and musically entertained.
Jennifer, born in Ancaster, Ont., has an autistic son, Nicholas, now 15, who became the focus of a book, then a play, about a mother living with an autistic child.
"When I wrote the book (Snapshots of Autism), I didn’t intend it to be a political tirade about lack of services for autistic families, nor a sappy Hallmark-type card," she says.
"It was written snapshots of Nick’s life, from the time he was diagnosed at three years old. It was not chronological, but like a box of loose photos dumped on the floor. All I knew was I wanted to tell my story, the voice of a parent, so that it might help other parents."
It has done more than that.
Jennifer was asked by artistic producer Scott Burke of Eastern Front Theatre in Dartmouth to turn the 221-page book into a stage play, God’s Middle Name.
"I wasn’t sure it would fit," says Jennifer, who had never written a play, although she had acted extensively. She is now a voice and speech teacher at Dalhousie University.
But it fit so well that since its premiere at Eastern Front in May 2006, it has been performed 52 times throughout the province and as far away as Ottawa, and will have a national tour next year. There have been requests to perform it in Iceland, Britain and Tasmania, Australia.
She talks about the challenges of being a parent of a child with autism.
"Your life changes overnight," she says, recalling her family physician initially telling the couple, ‘Boys talk later than girls, and he will soon’ and ‘He’ll get socialized.’ Finally, a specialist diagnosed autism spectrum disorder."
That was 12 years ago. Nick is now a Grade 9 student at Brookside Junior High School. He has had a regular teaching assistant and the support of the Provincial Autism Centre, started by Joan Craig, and the Autism Chair at Dalhousie, funded by Joan and her husband, Jack.
"When we were diagnosed, there was a 14-month wait time to see a developmental specialist," Jennifer says. "Now those wait times have been dramatically reduced."
She says that 12 years ago they were lucky to get books to research on available treatments. Now, when a family gets the diagnosis, there’s an immediate referral to an autism team with speech and language, behaviour and occupational therapists.
"It’s difficult to live with, both for Nick and the family," says Jennifer. "There is extreme behaviour to deal with, plus the school and medical systems, and the government, which has great gaps in funding for autism. We’ve been very fortunate that Nick’s schools have been very understanding. There are other parents who go through hell with their schools."
Jennifer is doing her part to create awareness. She has a new project on the go, a play she’s writing to create awareness of autism among young people.
"It’s about an autistic young person showing his strength, that he has something to offer and can foster tolerance among his peers."
She says Nick is fortunate to have a group of students at his school who support him, are tolerant and compassionate, and celebrate with him.
Jennifer celebrates, too.
As a playwright and the mother of an autistic child, she’s in demand as a speaker at conferences, including one in Ontario next week. School boards want to present her play.
"God’s Middle Name isn’t preachy or sentimental," she says. "There’s a lot of humour in it, which is essential. I’ve spoken to parents who say they’ve seen their lives up there onstage, and I can see the nods and the tears of recognition.
"It’s been gratifying to be able to help. And it was an honour to receive the green jacket for creating understanding and acceptance."
Bright Spot appears Monday, Wednesday and Friday. Be sure to read Great Kids in The Sunday Herald. Contact Joel Jacobson via e-mail at jjacobson@herald.ca or fax at 426-1158, or phone 902-426-2811 ext. 2222.
From a listmate
>
>Technological Autism?
>
>Check out this interesting article from the Globe and Mail last week.
>It's also interesting to see how themes about autism find their way
Into dialogue about mainstream topics - as a point of reference - as
Opposed to actually discussing the disorder itself.
>
>http://www.theglobeandmail.com/servlet/story/RTGAM.20071022.wgttechtism1
>022/BNStory/specialScienceandHealth/
>
>New Information on the Proposed RDSP
>
>The Ministry of Finance has completed a draft copy of the Proposed
>Registered Disability Savings Plan. To read the draft copy, click the
>link below.
>
> http://www.fin.gc.ca/news07/07-074e.html
>
>
>John Dowson Executive Director
>
>LifeTRUST Planning
>
>John Dowson Ch lp
>60 Harrison Drive Newmarket On L3Y 4P4
>Bus. 905 836-5460
>Fax 905 836-5458
>Toll Free 1 800 638-7256
>
November 1, 2007 at 11:00 AM EDT
The benefits of vaccines, particularly childhood vaccines, are undeniable,
even in a wealthy country such as Canada.
The virtual elimination of once-common conditions such as measles, mumps and
diphtheria through routine childhood immunization programs has prevented
thousands of deaths and untold suffering.
Immunization against hepatitis B has spared many health-care workers,
firefighters and police officers from the ravages of liver disease. Newer
vaccines can prevent chicken pox, meningitis, shingles and even infection
with HPV, the virus that can cause cervical cancer.
And vaccination remains our best weapon against the threat of pandemic
influenza, not to mention an effective protection against run-of-the-mill
flu that, in a "normal" year, sickens one-fifth of the population and kills
about 5,000 people.
Like all drugs, however, vaccines have side effects. Thankfully, most
reactions are minor - some pain at the site of injection or a little fever.
The allegations that vaccines cause autism and a variety of other conditions
have little or no scientific basis.
But a tiny number of those who are inoculated suffer serious side effects
such as paralysis, brain damage and even death.
From a societal perspective, effective prevention of devastating disease is
desirable. That is why public-health officials aggressively promote
vaccination. (Canada has long resisted mandatory vaccination, though those
who refuse to be vaccinated can face severe restrictions, such as being
barred from school or denied the ability to work in some health-care
settings.)
But public-health officials cannot and should not limit themselves to being
vaccine cheerleaders.
A credible vaccination program must also make every effort to minimize the
possibility of adverse reactions and ensure that, when people are
inadvertently harmed, they are cared for and compensated.
The provinces and territories - with the notable exception of Quebec - have
failed miserably in this regard. Currently, people harmed by vaccination
have no effective recourse.
Sure, they can sue. But as Mr. Justice Horace Krever, author of the landmark
report on the tainted-blood tragedy, said, the adversarial litigation
process simply does not work for patients who suffer harm from medical
procedures such as vaccination.
The reality is that risks are small, but they are not zero. We must
incorporate that reality into public policy.
Currently, those who are harmed by vaccines are treated as collateral damage
in the war against vaccine-preventable illness.
Madam Justice Mary Anne Sanderson of the Ontario Superior Court made that
point eloquently in a judgment late last year: "The road to protecting
public health should not be paved with individual victims. Fair, meaningful,
no-fault compensation should be made available to individuals suffering from
serious adverse events from vaccines."
Judge Sanderson ruled on a lawsuit by Lucia Morgan, a social worker who
developed chronic fatigue syndrome after being inoculated against hepatitis
B, and who sued the City of Toronto (a city health nurse had administered
the vaccine).
That it took 12 years between Ms. Morgan falling ill and a judgment being
rendered speaks volumes about the inappropriateness of the courts for such
matters. That Ms. Morgan lost just added insult to injury.
A measure of justice can still emerge if lawmakers heed the advice of Judge
Sanderson, who called for a no-fault program, saying it is a necessity "for
the sake of the health of citizens and fairness to individuals. "
A number of jurisdictions have no-fault insurance for the vaccine-damaged -
Japan, New Zealand, South Korea, Denmark, France, Germany, Switzerland and
the United States, to name a few.
The legislators worry that an insurance program would be costly and
unwieldy. The fear is unfounded.
Quebec has had a no-fault program since the mid-eighties. During the two
decades of operation, there have been only about 100 claims, and a couple of
dozen awards. (The Canadian Paediatric Society estimates that, among the
approximately 400,000 children born each year in Canada, about five will
potentially suffer a serious adverse event from vaccination. )
It is noteworthy that Quebec acted after a Supreme Court of Canada ruling on
the tragic case of Nathalie Lapierre, a girl who suffered severe brain
damage after a measles vaccination. The country's top court, in throwing out
the case, said the state had no legal obligation to compensate the girl but,
in an unusual move, said it would be an "excellent thing" to do so.
What the court said, in essence, is that people exposed to a potential harm
while undergoing an intervention that is in the greater public good,
particularly at the urging of the state, should be compensated by the state.
It's hard to argue with that logic.
It's unconscionable that governments, apart from Quebec, have not acted on
this issue. It is a just, ethical and sensible thing to do.
Until we have a no-fault plan in place, we cannot say that our vaccination
programs are complete; nor can we say we are truly prepared for a pandemic.
__._,_.___
Google alert
‘Autistics': We don't want a cure
ERIN ANDERSSEN
From Saturday's Globe and Mail
November 3, 2007 at 12:10 AM EDT
People stared from the moment they entered the drugstore: There's a brat with a bad mother, the looks said. Six-year-old Griffin Lambert insisted on going down every aisle, touching each item on the shelf, opening jars and breaking seals. His mom, Andrea Bradford-Lambert, tried to distract him in a quiet voice, but she knew he was tired from school.
At the checkout, Griffin was pushing the soap across the scanner too quickly for the price to register, and the frustrated cashier yelled at him. Griffin started screaming. “Once he's started a meltdown,” his mother sighs, “there's no going back.”
Helplessly, Andrea flashed the card she now carries in her wallet for these occasions: “My child has autism,” it reads. “He may communicate in ways that seem unusual to you.”
The card doesn't always work, but this time the cashier apologized. “I felt vindicated,” says Ms. Bradford-Lambert, who lives in Barrie, Ont. “She was very nice to Griffin after that.”
Videos
My child has autism
Andrea Bradford-Lambert sees her son Griffin, 6, as different rather than disabled
At home, he reads books, uses words like “ubiquitous,” and recites facts with a photographic memory. But the shoppers saw only one side: When his mom finally dragged him out the door, Griffin was still hollering and trying to lick the ice-cream cooler.
Not long ago, families of kids with autism hid behind closed curtains to avoid public judgment. Today, card-carrying parents such as Andrea-Bradford Lambert want their children to be seen as different, rather than disabled.
They have been joined by an increasingly vocal group of adult autistics (as they prefer to be called) who say they do not want to be cured. They say autism should be seen as part of the “neurodiversity” needed to evolve smarter human beings, just as biodiversity helps life flourish on Earth.
Evolutionary advantages aside, their perspective also becomes a question of human rights: Who decides what kind of people ought to exist?
“We need to get away from the idea that there is only one optimal way to be human and that we all have to aim for that. You'd think we'd know better by now,” says Michelle Dawson, an autistic and a researcher at the Rivière-des-Prairies hospital in Montreal. Her work has shown the IQs of people with autism to be higher than previously believed.
Ms. Dawson asks, “Are a person's rights contingent on them having a certain kind of brain?”
The number of children being diagnosed with some form of autism is now roughly 1 in 150, a significant rise since 1980, although there is considerable debate over why.
Autism is diagnosed along a broad spectrum and manifests itself differently in each individual. Intellectually precocious children with social difficulties such as Griffin Lambert, who have Asperger's, a milder form of the disorder, are grouped together with kids who injure themselves and cannot speak, dress or wash on their own.
People with more debilitating forms of autism may never live independently. Others mingle within the “neurotypical” mainstream, perhaps seeming quirky but often contributing unique abilities.
Autistics and their families are not alone in challenging how society defines disability. The deaf community has debated whether children should be given implants to help them hear – some people argue that the implants leave them in limbo, cut off from deaf culture while still outsiders in the hearing world.
But the idea that the neurodiversity of human beings warrants the same protection – and even celebration – as, for example, racial diversity is a controversial concept, particularly for parents with a child at home who can't speak or hug them, who are fighting for publicly funded treatment for their kids, a prominent issue in the recent Ontario election.
Autistic activists such as Ms. Dawson are demanding new thinking about a disorder that has been called worse than cancer, a blight in a society that assumes abnormalities need fixing. The United States recently devoted $1-billion to “combat” autism, including research into genetic screening that might weed it out in vitro.
But definitions of normal have always shifted, autistic activists say, pointing to 1970s medical books that listed homosexuality as a disorder. In their view, forcing people with autism to be more neurotypical is like trying to make left-handers right-handed.
Some parents and autistic adults are eschewing words such as “disorder,” preferring to be called “differently wired.” They speak of an autistic heritage – Albert Einstein's theory of relativity, Wolfgang Mozart's music and even Microsoft. (Though Bill Gates has never said he has Asperger's, autism bloggers have diagnosed him on their own.)
Traditionally, autistics who cannot speak have been considered mentally delayed, but technology and research have proved otherwise. Amanda Baggs, a non-verbal autistic, has become a star on YouTube by using voice-dictation technology on her computer to produce a film about her life called In My Language. So far, it has been viewed by more than 300,000 people.
The movie shows her rocking back and forth, rubbing her face in a book, while humming one long note – her language, she says in the onscreen text in the film, is “about being in constant conversation with every aspect of my environment.” Yet since she doesn't speak words aloud, people do not believe she is thinking: “They doubt I am a real person at all.”
Her writing is so articulate that some viewers accused her of feigning autism until she posted her medical records on her blog.
On the other hand, New Brunswick lawyer Harold Doherty has been accused of “endangering” autistics by detailing the life of his son, Conor, on his blog, and advocating for easier access to therapy. Conor, 12, has severe, low-functioning autism. He communicates verbally through sporadic shrieks and requires constant care; at school, he receives behavioural therapy in a separate room.
One afternoon, while his father was momentarily distracted on the phone, he wandered out the door and across a busy intersection. “He doesn't understand the risks of cars,” says Mr. Doherty, who worries that some day his son might be abused and unable to tell anyone. Conor often bites his mother and has pulled his father's arm away from the steering wheel while driving.
“But they don't like us to talk about that,” Mr. Doherty says. He believes that people who make the case for neurodiversity often trivialize autism and deny the difficulties faced by families with disabled children. People with Asperger's don't have any business telling him what kind of treatment his son needs, he says.
“Some of them are gifted. Great. But my son isn't. And many autistics aren't,” he says. “If I could cure my son with a wave of my hand, I would do it in a heartbeat.”
A fine balance
Tanya Stephenson sometimes lies on the floor with her son, Tyler, 5, and eyeballs marbles as they roll across the floor, stepping for a moment into the world as he sees it.
“You've just vacuumed your floor, you think it's pretty clean,” she laughs. “There's a little piece of paper here, and bit of food someone dropped there. So when the marble knocks into stuff, it goes in different direction. It is pretty cool.”
Tyler can lie there for hours with his face squashed to the floor, marble after marble. This intense concentration is a symptom of his autism diagnosis, which is medically defined by a string of letters – ASD/PDD-NOS, a designation that in itself speaks to the complications of defining autism. Within the autism spectrum, the acronyms stand for “pervasive development disability, not otherwise specified,” which means Tyler has some of the characteristics of autism, but, unlike Conor Doherty, not severely enough to be diagnosed as strictly autistic.
For a long time, Tyler didn't speak, and when he did, he echoed language that he heard, often quoting sayings from televisions shows in context. He used to sit for long spells staring at an empty space in the wall. His mom would wonder: Can he be happy doing that? “Maybe he saw something that I certainly couldn't see,” she says.
The Stephensons, who along with the Lamberts have helped form a Barrie, Ont., playgroup for families with autistic children, decided to try behavioural therapy, which uses intense repetition and modelling to teach language and life skills. Tyler gets 20 hours a week from a therapist. Recently, his parents taught him to hold a pencil by putting it in his hands 10 times a session, five times a day, for three days.
He now tells his mom that he loves her and gives hugs. “Maybe people will say, ‘Well, you taught him to hug you.' But isn't that what we teach all our kids?” Ms. Stephenson says. Her two other children, Jaymie, 7, and Tyler's twin sister, Hannah, are not autistic.
Each time they undo a behaviour that identifies Tyler as autistic, they wrestle with the choice. When he scores in a video game, for example, they have taught him to squeeze his hands together instead of flapping his arms wildly.
“And we debate this,” Ms. Stephenson says, “because if you're at a football game, you see some pretty wacky stuff happening when people are so excited because someone scores a touchdown. They look more odd than my son does. So why don't we try to squash that behaviour?”
In the end, while Ms. Stephenson knows that some autistics and families would criticize her for it, she wants Tyler to have a relationship with his parents, to enjoy the magic of his world while still participating in theirs.
“I am not trying to change that really unique part of him,” she says. “I am saying this is who he is, this is the way he is and if you understand him, you will find he can bring a pretty neat perspective.”
But how does that perspective get communicated, she asks, if he doesn't have the social skills to share it?
Many scientists are reaching a similar conclusion: Erasing all traces of autism might short-circuit human intelligence, potentially editing out the capabilities that create mathematicians, engineers and software designers.
A smart cure might instead tinker with the autistic brain, targeting the trouble spots while preserving its strengths – the ability to focus, to see detail sharply and to distill a complex environment into simple parts.
Some neuroscientists theorize that autism starts with a genetic glitch that skews the connections in the brain over time, improving some, but disabling others. If so, science may find a way to jump-start the stalled connections, possibly with drugs, without snipping the improved wiring.
“My hope is that we can find a way to have our cake and eat it too,” Cornell University neuroscientist Matthew Belmonte says. “That is, we can preserve those unique and very productive perceptual and attention capacities, but combine a way to share those gifts with the broader social world.”
Dr. Belmonte, who has a brother with autism, compares it to mingling at a cocktail party, surrounded by conversation but always thinking of that profound and pithy rejoinder 10 seconds too late, after the subject has already changed. “We've all had that experience,” he says. “Picture all of life being like that.”
The cure he envisions would allow what is profound and pithy about autistic thought to enter the conversation.
But even this approach raises unwieldy ethical and scientific complications: How does one safely “nudge” a child's brain? And if that child may grow up to be an adult comfortable and even proud of his autistic traits, who has the right to “tinker” in the first place?
The cultural perspective on autism, says Laurent Mottron, a prominent researcher at the University of Montreal, has been prejudiced by the way science views difference: When a person with autism performs a memory task as well as a neurotypical person, but using a different part of his brain, this is typically described as a deficit – not, as Dr. Mottron suggests, simply “a different way of being a human being.”
‘Yakkety-yaks'
While people promoting neurodiversity object to the idea of a cure, they are not opposed to technologies and other measures to help autistic people get by. However, they say the focus should be on helping autistics rather than making them more acceptable to “neurotypicals.”
In blog discussions, autistics sometimes even speak of themselves as a “superior species.” Neurotypical people get called conformists or, as one prominent autistic put it, “yakkety-yaks.”
A popular quote from Temple Grandin, an acclaimed American agriculture researcher and bestselling author with autism, describes the world if autism was eliminated: “You would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done.”
The overtone that autism endows people with superpowers further fuels the tension between the parents of disabled children who want cures (some of whom, like Mr. Doherty, accuse the neurodiversity camp of being ashamed of its “lower-functioning members”) and adult autistics who say they would not want to be changed. The latter position is making its voice heard in literature and art.
In his new biography, Look Me in the Eye, John Elder Robison describes a difficult (although creative) childhood, of knowing he was odd without understanding why, and the relief of being diagnosed with Asperger's in his 40s. But in an e-mail, he makes it clear that while he respects the choices of others, he has no interest in being cured. “We need understanding and empathy,” he writes, “not a medical ‘cure.' ”
Back in Barrie, mothers such as Andrea Bradford-Lambert and Tanya Stephenson are busy with the practicality of raising boys with autism, also hoping that society will eventually understand and appreciate their sons for their strengths and weaknesses.
At a recent hayride to pick apples, their group shared the wagon with a seniors club. Ms. Stephenson informed them at the start to be prepared: “Our kids may act strangely. But they are good kids and we are good parents.”
Sometimes people just need to be educated. Soon, for instance, Ms. Bradford-Lambert will show her card to the mall Santa so Griffin can sit on his lap without bells being jingled in his face.
“I think we're moving a tiny bit closer to acceptance,” Ms. Stephenson says. “You can learn a lot of really cool things if you live and flow through different worlds. And who is to say that our world is the normal world?”
Erin Anderssen is a feature writer for The Globe and Mail.
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