‘I’m sorry to tell you but your son has autism, here is a pamphlet.’

Christopher Heffernan

Wednesday October 10, 2007

Saskatchewan is failing its autistic children, says the province’s largest group representing people with the disorder.

Despite a recent increase in funding, the Saskatchewan government is
far from meeting its promise of a provincial autism program and is
still far behind Alberta, which has more supports for autistics and
their families.

“It still is only a tiny fraction of what is necessary to actually pay
for a provincial autism treatment program,” said Lisa Simmermon, public
relations director for Saskatchewan Families for Effective Autism
Treatment (SASKFEAT).

Both the symptoms and severity of autism can differ, but generally
autistics find it difficult to communicate with others in a typical way
and have difficulty understanding social conventions. Verbal and
non-verbal communication are often delayed in autistic children as is
their ability to learn in the usual settings.

The younger a child is diagnosed and treated the better his or her
chances of developing and being able to adapt to the world around them,
says the Autism Society of Canada. The latest published research shows
children should be getting 25 hours per week of attention from a
medical expert, said Simmermon.

This kind of treatment would be a dream for Roxanne and David Becotte
and their six year old son D.J. When the Neilburg couple’s only child
was diagnosed with autism at age three, the couple found themselves at
the start of an uphill battle which continues to this day.

“It was like this … I’m sorry to tell you but your son has autism and
here is a pamphlet,” said Roxanne. “They gave me a folder and said
‘good luck.’ I had no idea what autism was.”

As it stands, the Saskatchewan government has committed $3 million
annually for autism programs and services, but this is not even close
to the roughly $30 million SASKFEAT estimates is needed. The core
services it believes should be provided are behavioural intervention,
speech therapy, occupational therapy, and access to physicians with
specialized knowledge of the disorder.


D.J. was meeting with a speech and language pathologist once a week,
but that dropped to once every two-and-a-half months once he started
school, said his mother. As for occupational therapy – which for
autistic children amounts to a structured play time – Roxanne drives to
Saskatoon once a week and pays out-of-pocket for a one-hour session.
She estimates she pays $1,200 a month for those trips alone.

“In the first two or two-and-a-half years I wore out a brand new
vehicle and I’m on my second,” she said. “It’s very costly because the
funding isn’t there and the services aren’t there.”

The situation the Becotte’s find themselves in differs sharply from the
Bellands, who live on the Alberta side of Lloydminster with their
eight-year-old autistic son Patrick and their three other children.
While life has certainly not been easy for them, the amount of services
they have received for their son Patrick has been far superior to what
is offered to Saskatchewan families.

“We learned a lot of really good strategies to help him get calm and
stay calm and focus on what we need him to do,” said Lily, Patrick’s
mother.

Patrick receives separate, specialized programming in school from a
full-time aide and the family also gets assistance from aides outside
of school. He has much more regular access to speech therapy and
occupational therapy, all of which is paid for by the Alberta
government.

Most importantly, the government pays for Applied Behavioural Analysis
(ABA), currently the most popular form of treatment for autistic
children. The program is directed by a behavioural consultant from
Calgary who visits the family once every six weeks and provides the
parents and their aides with both training and a curriculum to carry
out the program.

“He is a lot more compliant and he follows instructions a whole lot
better,” said Lily. “He learns better because you can’t learn if you’re
not willing to listen.”

Roxanne would love to have ABA programming for D.J., but says they
simply cannot afford the $20,000 they would have to pay in absence of
government funding. She has recently received partial funding for the
construction of a $15,000 occupational therapy room in their house, but
the lack of consistency in support from the government makes her worry
about the future.

“That swing is $600 but he might need one that’s going to cost $1,200 in two years,” said Roxanne.

The Saskatchewan government says it is not deaf to the pleas of
families like the Becotte’s, which is why it has promised the
allocation of $3 million in annual funding. From November until March
the government will consult with autistics, their families, and experts
before deciding how the money should be spent, said Graham Addley,
Minister of Healthy Living Services. While the money may not be as much
as SASKFEAT would like, Addley argues a phase-in approach to funding is
the most fiscally responsible course of action.

“We’re providing the resources and ramping up the system to respond to
these needs as quickly as we can,” said Addley. “If through this
process we learn there’s more that needs to be done, then we can look
at that.”

If the Saskatchewan government does not do more to help autistics and
their families, it will fail an entire generation of people with the
disorder, said Roxanne.

“These children are our future,” she said. “Now do they want to look
after them for the first 18 years of their life or do they want to look
after them from 18 until they’re gone?”

Malcolm Stanley