Autism: How to handle your child’s condition

“Check out what Deckard made!” Farida Peters holds out
her smartphone to show me her three-year-old’s latest
drawing. It’s no more than a stick figure, yet she’s agog at
her son’s achievement. She has reason to be proud. A few
short months ago such a feat scarcely seemed possible.

At age one, Deckard needed an operation to remove
fluid from his ears. To help him communicate, the Peters
took their son for speech therapy. What they ultimately
received was a referral to a specialist and an unexpected
diagnosis: autism.

“I wasn’t surprised, but I was very upset,” recalls the
Toronto mom. “The developmental pediatrician initially
made me feel that I wasn’t doing the right things to teach
my son. I cried all the time. It was hard for me to be
around people. I thought they wouldn’t understand if
he freaked out. They’d think he was a brat. It was really
isolating for me.”

Farida’s experience echoes that of many – one in 94, in
fact. That’s the number of Canadian children, predominantly
boys, currently estimated to have autism, a neurological
disorder that affects communication, behaviour
and social interaction. And that figure is steadily rising.

As the government pours money into research, families
like the Peters struggle to help their son face everyday
challenges. Deckard’s play is rigid and repetitive, his
speech limited, his meltdowns intense.

Autism is a scarcely understood disability with no
singular known cause. Everyone, it seems, has a theory,
none of which is conclusive. Over a decade ago, British
medical researcher Andrew Wakefield infamously posited
a correlation between the measles-mumps-rubella (MMR)
vaccine and autism. (Even though any MMR-autism link
has since been thoroughly disproven, immunization rates
continue to plummet worldwide, leading to a recent resurgence
in measles.)

Other theories behind the cause of autism point to
genetic variables, environmental toxins, and physiological
influences – including gastrointestinal, hormone, and
immune differences.

Yet some believe the rise in autism is merely perceived,
a result of heightened awareness and a broadening of the
inclusionary criteria over time. What previously might
have been diagnosed as a developmental or learning delay
is now referred to as autism.

And the path to diagnosis is rarely clear-cut, as Lyanne
Lavigne of Gatineau, Que., knows too well. When her son
Zachary failed to hit developmental milestones within
the widely accepted timeframe, she suspected something
was wrong. He only started walking at 20 months, and his
speech was delayed. He didn’t engage with other children
and became obsessed with things like vehicles and music.
Zac was diagnosed with severe ADD and developmental
delays, but his mom suspected the diagnosis was wrong.
She insisted he see a specialist. Her gut instinct was right.

Whatever its cause – or causes – autism is the epidemic
of our children’s generation, creating a ripple effect that
spreads from families to schools and to the workplace
beyond. As a society, we can’t afford not to do something
about it.

Early action

While there is no ‘cure’ for autism, if treatment
begins early (ideally under the age of four), many
children can make great gains. It’s therefore vital
that parents and professionals pick up on early
signs of the disorder. With autism, the wait-andsee
approach can actually do more harm than

“Early intervention is absolutely critical,” insists
Nancy Freeman, a psychologist and Clinical
Director of the Toronto Partnership for Autism
Services (TPAS). “There is such a huge body
of literature that clearly supports the efficacy
and effectiveness of behavioural therapies. We
are finding that 40 to 50 percent of very young
children can really take off.”

Funded by the Ministry of Children and
Youth Services, Surrey Place Centre is a
Toronto-based agency that offers specialized
clinical services for children with developmental
disabilities and/or autism spectrum disorders,
including Intensive Behavioural Intervention
(IBI) and Applied Behaviour Analysis (ABA).
Finding the right intervention for each child at
the right time is pivotal. Unfortunately, there is
no one-size-fits-all approach.

For Deckard, weekly speech therapy proved
invaluable. “When we started going, it was
hard,” admits Farida. “He would be screaming
and wouldn’t sit still. I hated it at first. But then
I saw how much he was improving… He started
making eye contact and saying more words.”

Parenting kids on the autism spectrum is
no easy road. After Deckard was subjected to
various medical tests, the Peters were sent home
with a heaving file of resources and forms, and
ostensibly told ‘good luck.’ The diagnosis came
as an emotional blow to his mother, who spent
a month mourning and trying to process what
it would mean for her family, before she sprang
into action. She purchased various folders in
which she logged every phone call, appointment
and follow-up. Being her son’s advocate and
project manager quickly became a full-time job,
forcing her to abandon her cake design business.

“There are a lot of services,” says Nancy.
“Trying to navigate the system successfully is
exhausting because it turns out you have a kid
with autism, and that takes up much of your
time and energy.” Her advice to parents is to
contact the agency that meets the bulk of the
child’s needs as the first port of call. Speak to a
central intake worker to coordinate services. Fill
in the forms and get on waitlists immediately.
Depending on the area, the wait times for some
programs can span two years – time that these
children simply do not have to waste.

While awaiting funded services, many parents
wind up paying for treatment out of pocket.
Few therapies are covered by private medical
health plans, though disability tax credits do
offset some of the costs, which can be exorbitant.
Speech-language pathology and occupational
therapy average $120 per hour, while full-time
IBI can cost upwards of $50,000 per year.

By the time Zac was diagnosed with autism
at four-and-a-half, he was too old for an ABAbased
daycare program. His parents paid for
private speech and occupational therapy to the
tune of $600 to $800 a month, only half of which
was subsidized. His mother still questions
whether such therapies, though beneficial, were
worth getting in debt for.

Some families go to extremes – re-mortgaging
their homes to pay for therapy while their
children are still young and their brains are
still malleable and responsive. For many others,
private therapy simply isn’t an option.

Parental stress

Aside from the financial burden, the strain of
having a child on the spectrum can be considerable.
At the time of Zac’s diagnosis, his mom did
not know a single other parent of a child with
autism. In addition to feelings of isolation and
hopelessness, she went through a phase of intense
introspection. “Did I eat well enough during
pregnancy? Did the oxytocin/epidural I had
during the labour process damage his brain?”
She questioned whether she had done enough to
help him. “Though I knew these thoughts were
irrational, I couldn’t help but feel guilty.”

Though well-meaning and sympathetic,
friends and relatives simply do not understand
what it’s like to parent a child on the spectrum.
That’s where parent education groups come
into play. Often with shorter waiting times, the
groups bring together families experiencing
similar issues. As they learn strategies to support
their children, parents usually end up supporting
each other. They form networks, swap
tips, and trade valuable insider information.

“The groups are great for forging relationships
and helping people cope,” says Suzanne
Robertson, supervisor of Toronto Autism
ABA Services. “It’s interesting how quickly an
intimacy forms. We facilitate that because we
want people to come and feel safe to share [their

Now 11, Zachary is a charming boy with a
great passion for music. This summer he attended
a special summer camp run by Trait
d’Union Outaouais Inc. (TUO), a not-for-profit
organization that provides respite to parents
and specialized services to integrate autistic
children into society. His mother, who serves on
the TUO board, has a newfound sense of perspective.
“Today, I don’t feel as guilty or powerless.
I’ve learned to live with autism and accept
it as my new normal. I’ve also learned – and am
still learning – to accept Zac’s limitations while
focusing on his strengths.”

Farida Peters is also starting to see a silver
lining. Deckard is a sweet little boy who enjoys
painting. Approved for TPAS’s IBI program,
he is finally nearing the top of the wait list. His
mom takes each day as it comes, never knowing
whether it will bring sunshine or thunder.
“I ended up being burnt out and angry at the
process. But everything we’ve done for him has
paid off. He’s not magically someone else; it was
a lot of work.”

Hope or hype?

A groundbreaking and controversial study from New York University’s Langone Medical Centre recently
revealed that oxytocin, administered as a nasal spray, may prove helpful to people with autism who
have lower than normal levels of the naturally occurring neurohormone. Known as the “love hormone,”
oxytocin is said to boost trust and cooperation among social circles, and minimize background noise.

Is oxytocin a treatment for autism? It’s tempting to think so, but researchers insist the hormone may
not prove effective over the long term. Different and opposing Interpretations of this study continue to
surface in the mainstream media.

Julie M. Green is a Toronto-based writer and frequent contributor
to ParentsCanada. She has one son, a wonderful five-yearold
who happens to have autism.

Originally published in ParentsCanada magazine, October 2013.

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