Navigating Through The Fog – Autism Awareness

As those who know me, they know that raising awareness for Autism is important to me and my family.  Many people have asked why.  Do your kids have autism they ask?  The answer is thankfully no.  But that doesn’t mean someone who I know and care about isn’t affected by autism.

One in 88 kids are born and diagnosed with some form of autism.  That’s up from one in 100.  The numbers are staggering when you think about it.  As I talk about autism at events, fundraisers, at council meetings or just speaking with friends, many of them are surprised by that number and the fact its changing…in the wrong direction.

As I said before, thankfully my children are not affected by autism, but you don’t have to go too far outside of your circle of friends to find someone who is.  I have a number of very close friends who have to deal with an autistic child on a daily basis.  What you or I would consider to be a “normal” life with our kids dealing with soccer, football, hockey, gymnastics practices on a weekly basis, parents of autistic children would beg for that kind of normalcy in their life.

I have had the pleasure of meeting so many parents of autistic children over the last few years while helping out Autism Halton and with every parent I speak with there’s a sense of frustration & optimism as well.

Their lives are so structured and defined that if the proverbial “monkey wrench” was tossed into their lives it would be a catastrophe.  But still they move forward.  Move forward with the hope that one day their son or daughter will navigate through the fog.  Their day to day lives take a toll on friendships, marriages and work life.  The much needed therapy for their children can cost them thousands of dollars a month.

Even with all of this going against them, they keep moving forward.  Most recently at the 13th Annual Halton Police fundraiser for Autism I had a chance to meet with so many parents and their stories were the same.  Tales of frustration and of hope.  But the one common thing I got from them all…they are no different than parents of children without autism.  There has always been a “stigma” with autistic kids.  Must be bad parenting…they cant control their kids…they’re so disruptive.  These parents only wish people would understand.

That’s where awareness comes in.  If more people knew about autism they would understand.  The “stigma” of being bad parents can be lifted and they can continue to move forward.  Some of these wonderful people feel like they’re alone in the world since not everyone understands what they go through.  That needs to change.

I’m so glad the local paper is doing this 4 part series on autism.  Please read it and pass it on to your friends.  Your understanding will go a long way in the lives of parents with autistic children.  They wont feel so isolated and the stigma can be lifted.  Awareness is the first step…so please read on.

Catherine O’Hara and Julie Slack, METROLAND WEST MEDIA GROUP

Trying to piece together the autism puzzle – Navigating Through the Fog, a four-part Metroland series on austism spectrum disorder.

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 about one 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.

Navigating Through the Fog, a four-part Metroland series on the spectrum disorder, attempts to piece together the puzzle of autism.

• • •

Little Max Carefoot was just a tot when his mom Katrina and dad Scott suspected their son’s development was lagging compared to that of 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 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 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 serious(ly) 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 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 do so.

“I didn’t know it was autism, but I knew enough that something was really wrong,” she said.

Dorian Poe, 9, is a 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 Poe.

Obtaining a diagnosis is a long, taxing journey. According to these three families, the wait was roughly two years. They decided they couldn’t waste any more time.

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 towards solutions.

“I wasn’t comfortable starting behaviour therapy without a diagnosis,” said Carefoot. “Once he got that, we just went full steam ahead.”

• • •

Autism is a lifespan disorder — one its victims must deal with their entire lives. It originates in the brain and changes with development. 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 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.

Next week, Navigating Through the Fog looks into the traditional therapies available for those living with autism, their successes and the hardship parents face when accessing therapies and funding.

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