Families living on the autism spectrum
By Catherine O’Hara and Julie Slack • METROLAND WEST MEDIA GROUP
Part 1 of 4: What is wrong with our child?
Somewhere in Ontario, a child would rather line up his toy cars than navigate them through an invisible maze.
Somewhere in Ontario, a mother looks at her child and instinctively wonders. A doctor tells a father they should wait and see.
Somewhere in Ontario, the diagnosis is confirmed – autism spectrum disorder (ASD).
Approximately one in every 100 children lives with autism, a neuro-developmental spectrum disorder that impedes a person’s ability to communicate and make friends.
Statistics indicate that up to 1 per cent of the population is on the spectrum. In Hamilton, some 5,000 individuals are caught in its fog.
The cause of the disorder remains unknown, but researchers believe the secret is in the genes. With no cure for autism, families affected by the disorder have turned to a variety of therapies that have proven successful in alleviating its wide-ranging symptoms. But accessing help is easier said than done.
Little Max Carefoot was just a tot when his mom Katrina and dad Scott suspected their son’s development was lagging compared to his peers. The blond-haired boy with beautiful doe eyes wasn’t talking, didn’t respond to his name and didn’t offer eye contact.
The Carefoots struggled with the notion that something was impeding Max’s development. Doctors weren’t sympathetic. They wouldn’t entertain autism spectrum disorder as a possibility.
“Our doctor was telling us that milestones go six months either way. I’m going through my autism checklist saying, ‘Hey, look buddy, he meets all the criteria,’” said the Oakville mom. “We just weren’t taken seriously as first-time parents.”
Families across Hamilton and Halton share similar stories.
In Milton, Ana Bejarano and her husband, Antonio Herrera, did just about everything to soothe their fussy toddler, Lucas. At 18 months, the young boy was getting very little shuteye, would shy away from any touch, didn’t point to objects or people, and wouldn’t respond to his name. Lucas was also very rigid in his play and suffered meltdowns for no particular reason.
“The doctor said he’s just eccentric,” said Bejarano. “She took the wait-and-see approach.”
This approach, according to medical experts, is common, as family doctors don’t often feel comfortable making the diagnosis. Many believe a specialist is better qualified to make that call.
“I didn’t know it was autism, but I knew enough that something was really wrong,” Bejarano said.
Dorian Poe is a nine-year-old Burlington boy who was diagnosed with ASD when he was in Grade 1. It took several years for the long-awaited answer to his tantrums and fits that left the family reeling since he was a toddler.
“He was hurting inside and he’s frustrated, but we never knew why,” said Dorian’s mom, Christine.
Obtaining a diagnosis is a long, taxing journey. According to these three families, the wait was roughly two years. They decided they couldn’t wait anymore.
The Carefoots sought the advice of a medical professional trained to identify autism. The Milton couple opted to pay out-of-pocket for answers, while the Poes just kept pressing their family pediatrician.
“When we got the diagnosis, it was like death to me,” said Bejarano. “We both cried.”
As devastating as it is, the diagnosis is also a relief, allowing families to inch forward down the long, winding road toward solutions.
“I wasn’t comfortable starting behaviour therapy without a diagnosis,” said Carefoot. “Once he got that diagnosis, we just went full steam ahead.”
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Autism is a lifespan disorder – one that its victims must deal with through their entire lives. It originates in the brain and changes with development.
The severity of symptoms experienced by infants, children, adolescents and adults vary widely, hence the designation of autism as a “spectrum” disorder.
In the U.S., statistics indicate that one in 88 children have ASD.
“This is a huge epidemic,” said Bejarano.
North of the border, however, Dr. Peter Szatmari, McMaster University’s expert on spectrum disorders and director of the Offord Centre for Child Studies, suspects the figures are more like one in 100.
ASD is prevalent in today’s society. But this doesn’t mean that the condition is on the rise. “Most of the increase is accounted for by better recognition, better diagnostic criteria, understanding what autism looks like in the very young and in older individuals and in those with other conditions like Down’s syndrome and cerebral palsy,” said Szatmari.
Trish Simons, president of Autism Ontario’s Hamilton-Wentworth chapter and mom to three boys on the spectrum, thinks there’s more to the increase than better diagnostic tools.
“When my children were diagnosed, it was one in 15,000. Thirteen or fourteen years later, it’s one in 88,” said Simons. “You can’t just tell me that in 13 years, boom, everybody’s figured out this is how we diagnose it.”
Changes in risk factors, such as environmental influences, increased frequency of in vitro fertilization and older parents could contribute to autism’s pervasiveness against the background of genetic vulnerability, explained Szatmari.
Yet, much about ASD remains to be determined as medical researchers continue to explore its mysteries to develop better ways to treat it.