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Roger Collier,
The Ottawa CitizenPublished: Saturday, September 29, 2007
He
was the son they had been waiting for. Robert Shalka and Lena Gudyrenko
already had a daughter, Roberta, and now here was Philip — blue-eyed,
dark-haired, a beautiful boy. When 18-month-old Roberta first saw her
baby brother, she called him "lial’ka," a Ukrainian word she had
learned from her mother. It means doll.
"We had a million-dollar family," says Shalka.
Philip
was a quiet baby. At a year old, he showed little interest in toys and
didn’t respond when his parents said his name. He pushed away hugs.
Months later, Roberta asked her parents why Philip didn’t talk.
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‘There was a lot of tears. It was like a death in the family.’ Robert Shalka on his son Philip’s autism diagnosis
Bruno Schlumberger, the Ottawa Citizen
In
October 2002, three months after Philip’s second birthday, a
neurologist diagnosed him with autism. The news blindsided his parents.
When the shock faded, says Shalka, the grieving began.
"There were a lot of tears. It was like a death in the family."
Philip
is one of about 18,000 autistic children in Ontario. Many parents feel
the province is doing too little to improve access to a popular autism
therapy called intensive behaviour intervention, or IBI. They’re angry.
And active. They’ve taken their pleas to the Internet, to the media
and, on more than one occasion, to Ontario’s streets. And autism has
become an issue in the ongoing Ontario election campaign, with
politicans trying to buy votes with offers of more money for treatment.
This
isn’t the first time the worlds of autism and politics have overlapped
in Canada. In 1998, four families sued the British Columbia government,
arguing that autism was a medical condition and the expense of treating
it therefore fell to the province. The case went all the way to the
Supreme Court of Canada, which ruled in favour of the B.C. government
in 2004.
Several Ontario families affected by autism recently
launched a similar challenge, which came to a similar end: defeat. The
loss inflamed an already hot situation — just in time for the
provincial election. The leaders of Ontario’s Progressive Conservative
and NDP parties haven’t failed to take advantage.
Conservative
leader John Tory has reminded voters, again and again, that the list of
children waiting for autism services has grown at least 10-fold since
the Liberals took office. Premier Dalton McGuinty, he says, has failed
the autism community. If elected, Tory says he would commit an
additional $75 million a year toward autism therapies and clear the
waiting list.
Howard Hampton, leader of Ontario’s NDP party, has
promised that an NDP government would invest an additional $100 million
to help autistic children. The new funding would be used to improve
access to therapies, provide respite care and fund autism research.
So,
which platform appeals most to those involved in the fight to improve
Ontario’s autism services? The answer, quite possibly, is neither.
"It’s
not about party platforms. It’s more about a leader that we can trust,
a leader with integrity who will implement what he promises," says Sam
Yassine, an Ottawa father of an autistic child and member of the
Ontario Autism Coalition. "Maybe John Tory or Howard Hampton will lie
to us. But for sure, there is no doubt that Dalton McGuinty will lie
again."
To understand why Yassine, and many other parents of autistic
children, hold McGuinty in such low regard, one must look back four
years, to the day when the soon-to-be premier wrote a letter that
quickly came back to haunt him.
During the last provincial
election campaign, in September 2003, McGuinty sent a letter to Nancy
Morrison, the mother of an autistic child from Bradford, Ont. In the
letter, he criticized the then-ruling Conservative party for only
providing IBI funding for children between the ages of two and five. He
called the policy unfair and discriminatory.
"The Ontario Liberals support extending autism treatment beyond the age of six," wrote McGuinty.
In
April 2005, an Ontario court decided that refusing IBI for children
based on age was, indeed, discriminatory. Ontario Superior Court Judge
Frances Kiteley ordered the province to pay for therapy for all
autistic school children. McGuinty, now premier, balked at the ruling.
Within
days, the Liberal party launched an appeal. The government should
decide how expensive therapies are funded, McGuinty said, not the
courts. Some parents of autistic children were baffled, and outraged,
by the premier’s decision.
On July 7, 2006, the Ontario Court of
Appeal ruled in favour of the government. Mary Anne Chambers, Ontario’s
minister of Children and Youth Services, was quick to assure parents of
autistic children that the government, while now in control of funding
decisions, had no intention of refusing therapy based on age.
But
the parents who supported the original ruling claimed McGuinty had
betrayed them. They held protests throughout the province and appealed
to the Supreme Court of Canada. This spring, however, the Supreme Court
announced it would not consider the appeal.
Despite the court
battle, and the ugly publicity it spawned, McGuinty insists he has done
much to help the autistic community. The Liberals have overseen the
creation of an IBI graduate course at Brock University, the only one of
its kind in the province. They have also designated $140 million for
autism services for 2007-08, more than triple the $44 million spent in
2003-04.
Ontario’s autistic children are better off today, the
premier says, than they were when he was elected. Yassine would beg to
differ.
Yassine’s seven-year-old son, Amjad, began
government-funded IBI therapy three years ago. (IBI is based on the
principles of applied behaviour analysis, or ABA, which is a process of
observing and modifying behaviour.) The results, Yassine says, were
amazing.
Amjad starting communicating, using a mix of short
sentences and sign language. He interacted with his sister. When
another child wanted to play with his cherished toy trains, Amjad no
longer threw a tantrum.
After turning six, though, Amjad was
discharged from the province’s autism intervention program. Some
children lose their funding because they fail to make sufficient
progress. But not Amjad; he was discharged for making remarkable
progress.
"Either way, they’re doomed," says Yassine.
Not all autistic
stakeholders, however, accept that autistic children are doomed if
denied ABA-based therapies. Furthermore, some claim the politicization
of autism is not only misguided, it may be hurting autistic people.
"What
you see out there in those protests, it has never been about
assistance," says Michelle Dawson, a developmental disorders researcher
at Hôpital Rivière-des-Prairies in Monteal. "It’s not about helping
autistic people succeed in society as autistic people. It’s about
making autistic people as normal as possible."
Dawson,
herself autistic, says the rhetoric used in the autism debate portrays
children as hopeless unless their autistic traits are quashed and
replaced with everyday skills. She claims scientists have long known
that how autistics act as children is a poor indicator of how
successful they’ll be as adults. Some of the most accomplished
autistics she knows, says Dawson, displayed the most appalling
behaviours as children.
Autism is a disability, says Dawson, not
a disease — ABA therapies, therefore, shouldn’t be considered medical
treatments. She is not for or against ABA, but believes that when
people rush to take political positions on what’s best for autistics,
it detracts from more important issues, such as improving the science
behind therapies and considering the ethics of applying them.
Good
science means good therapies, says Dawson, and the goal of a good
therapy should be to improve the lives of autistic people, not to pound
autism into the ground.
Estee Klar-Wolfond, a Toronto writer and
founder of The Autism Acceptance Project, also believes limiting the
political debate about autism to funding IBI is short-sighted.
"We’re
sort of focusing so much on the children and getting rid of autism or
fixing the child that we’re ignoring that autism is lifelong, and that
we need supports and services over the life span," says Klar-Wolfond.
"We need to focus on all of it."
Klar-Wolfond has a five-year-old
autistic son, Adam. When she enrolled him in an ABA-based therapy
program, Adam’s development didn’t improve. In fact, she says, Adam
regressed.
"Many ABA programs, not all, are administered in this
really antiquated approach. If the child’s not responding, it doesn’t
mean they don’t know. So the kid gets held back. Awareness doesn’t
equal response."
Klar-Wolfond’s year-old organization, which has
560 members, is preparing a document of recommendations to present to
Ontario’s next government. The suggestions will include encouraging the
development of a mosaic of services and finding ways to reduce the
stigma of autism.
Her message of accepting autism has proven divisive among parents of autistic children.
"It
doesn’t have to be a battle and a mud-slinging thing," she says.
"Unfortunately, it tends to go that way. There are certain ABA
advocates who really don’t like me because I advocate the joy of
autism, which is being misinterpreted as doing nothing."
Shalka probably wouldn’t label himself as an ABA advocate. And he is
certainly not opposed to the government introducing a variety of autism
services. But when he and Gudyrenko explored the therapy options
available for Philip in 2002, IBI seemed the best of the lot. (Although
some researchers believe the studies supporting IBI are lacking, many
autism experts consider ABA-based therapies the best available, though
results vary widely from child to child.)
They applied to
Ontario’s autism intervention program, which is funded by the Ministry
of Children and Youth Services. Autistic children are allowed into the
program depending on the severity of their disorder, as determined by
psychologists.
After an 11-month wait, Philip was accepted. His
parents chose to receive funding for the therapy directly instead of
taking him to a government-run treatment centre. A rotation of six
therapists spent 40 hours a week with Philip at his home, leading him
through a series of exercises designed to improve a host of skills:
language, cognitive, social, self-help, fine- and coarse-motor control.
Each exercise was broken down into small steps, which were repeated
many times over.
Not
long after beginning IBI, Philip began to respond if his name was
called. When his parents asked him to do something, such as sit down,
he no longer ignored them. His speech didn’t develop much, but Shalka
says IBI benefited his son in other ways. On a recent "receptive
knowledge" test, Philip scored at the level of an 18-year-old.
"He’s a bright little guy," says Shalka. "He’s sort of locked in by a serious difficulty in communicating."
When
Philip entered kindergarten in 2006, his funding was reduced to cover
only 18 hours a week. When he turned six, a government of Ontario
psychologist decided he was no longer making enough progress to justify
the costs of his IBI sessions.
Soon after, the government
discharged Philip from the intervention program. The psychologist
recommended that Shalka and Gudyrenko explore alternative therapies for
their son. When they asked her what the alternatives were, she said she
didn’t know.
"It’s unfair and unjust that he was discharged,
right in the middle of the school year, with two weeks notice," says
Shalka. "He was essentially dumped."
Despite the psychologist’s assessment, the
Orléans
couple believes IBI can still help Philip, now seven, and has decided
to continue the therapy at their own expense. Shalka, a public servant,
estimates it will cost his family about $30,000 a year.
The
inadequacy of the intervention program, however, is just one of the
problems facing autistic children, says Shalka. There aren’t enough
properly trained therapists, he says. There is no IBI accreditation
system, and autistic children don’t receive IBI therapy in schools.
"The
government has to get on with it and start doing something. That takes
will and moral fibre," says Shalka. "I quite honestly doubt that
McGuinty has this."
The Conservatives and NDP are making a lot of
promises, says Shalka, but he doubts their sincerity. In his
experience, politicians who aren’t in power often talk big, but once in
office, their memories suddenly grow short.
"I honestly don’t know who I’m going to vote for," he says. "But I know who I’m not going to vote for."
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