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12 Years Of Autism Awareness Have Reshaped My Family's World

04/02/2017 10:24 EDT | Updated 04/02/2017 10:24 EDT

In June 2005, I got a dose of autism awareness that changed my life forever. My two precious, but odd, unreachable, uncommunicative little two-year-old twin boys received a diagnosis of autism at Grandview Children's Centre. With a copy of Let Me Hear Your Voice, a list of phone numbers for supports and a warning that we would be put on waitlists for all of them, we left the centre devastated and without a clue.

autism

In 2005, autism wasn't a word that carried any weight in our world. The word and its reputation hadn't yet crept into our circle of friends, our extended families or our neighbourhoods. Apparently, it hadn't even been on the radar of our family doctor for the year and a half that we had brought forward our list of concerns about our twins and the markers they seemed to be missing in their development.

Several weeks before the diagnosis, my best friend, Ian, who also happened to be an elementary school teacher, had sat me down and ran through the checklist that he had pulled from the Internet. O and W's quirks and symptoms checked all the boxes for this thing called "autism." That conversation cushioned the blow that was to come -- and, strangely enough, also reassured me because it validated all the fears that I had about the boys. It affirmed that I wasn't crazy, that my mommy instinct was (sadly) on the right track.

In 2005, my only references to people with autism were characters from movies like Rain Man or What's Eating Gilbert Grape? I didn't have a lot to go on, but knew enough from my years working with people with developmental disabilities that my dreams for my boys had just taken a hard right turn. Without the awareness in the media or the familiarity in our communities, there weren't any models of success stories to look to. When I brought back the news to my own family doctor, he admitted that he had never encountered it before and was as much at a loss as we were about where to go next.

In 12 years, Autism Awareness Day now has a different meaning for me than it did back then.

My ex-husband made the bold move to send out an email, sharing the news with everyone we knew in the hopes that we could find resources through our networks. To think that, back then, I only remember one friend out of hundreds coming back to us with a connection of someone she knew who also had children who had autism.

I also remember the countless conversations with concerned friends and family in which we had to justify the diagnosis -- we had to prove to them that the diagnosis was real.

"Yes, I agree that the boys look like other, normal kids. Yes, I know that your grandson didn't speak until he was four and he turned out fine. Yes, I know that twins develop a little differently than other kids. Yes, I'm sure you do know of other kids who flap their hands and line up Lego blocks. We hear what you are all saying, but the doctors aren't wrong -- our kids have this thing called autism!"

In 2005, Autism Speaks was co-founded by Suzanne and Bob Wright, who just happened to be the president and CEO of NBC. In honour of their affected grandson, they set out on a determined mission to raise funds and awareness. That year marked a year of great change for the autism community. With the Wright's successful insertion of the topic of autism into their high-profile media connections, it slowly became a word and a disorder that the world learned more about.

mother looking at twins

(Photo: Aldo Murillo via Getty Images)

But awareness didn't necessarily bring understanding and compassion. That same year, our local paper put out a story about our family's plight. Shortly after the paper ran it, I got a phone call. A stranger looked us up and thought it was their responsibility to inform me of all the things I must have done to cause my boys to have autism. It was the amalgam fillings in my teeth. I lived too close to the power plant and the 401. Had I been to a farm? I had been exposed to too many chemicals and pollutants.

Friends held a fundraiser for us at their property that springboarded an effort to raise money for the therapies that we were waitlisted for. At the fundraiser, another stranger approached me -- "You say that your older son was only 19 months older than the twins? Too many kids too close together. You neglected them. That's why they have it. You didn't hug them enough. I've read about those refrigerator mothers." Or the other random person who thought he should tell me that he believed that "retarded" kids were a drain on the system and should be exterminated.

In 12 years, Autism Awareness Day now has a different meaning for me than it did back then. In those early years I just hoped that people would know what autism was so that I didn't always have to explain my boys' differences to them. It evolved into wanting people to understand that our boys were different, but not less. Then, it was wanting acceptance so that they would be accepted into the rest of society and have access to the same things their peers had.

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Now I think it's about shaking the world up to realize that even if autism has not yet entered their own perfect bubble of a life, at this increased rate of prevalence, it will very soon. It's time that all of us started coming up with solutions for finding better ways to diagnose; for finding treatments to help reverse effects on an affected person's ability to communicate; for caring for those who will not be able to become independent; for finding them meaningful employment; for changing the way we perceive the differences and recognizing the extraordinary skills and abilities that they can bring to the table.

Autism Awareness Day is my day to reflect on how far the world has come in the last 12 years and how proud I am of my family's contribution to raising this awareness. Twelve years ago, our lives may have taken a hard right into uncharted territory, bringing us countless ups and downs. But I was able to join an exclusive club that has now been opened wide to the public and in this place. I have found a community of passionate, tenacious, resilient and resourceful warriors.

A Few Facts taken from Autism Speaks:

  • One in 68 children are currently diagnosed with autism spectrum disorder.
  • Autism is four to five times more common among boys than girls.
  • An estimated 1 out of 42 boys and 1 in 189 girls are diagnosed with autism in the U.S.
  • The prevalence of ASD has increased over 100 per cent in the last 10 years.
  • ASD is caused by a combination of genetic and environmental influences.
  • Autism is a lifelong spectrum disorder.
  • The unemployment rate for individuals with ASD is over 80 per cent.
  • Autism is now the fastest growing and most commonly diagnosed neurological disorder in Canada.
  • An estimated 50,000 teens with autism become adults -- and lose school-based autism services -- each year.
  • Around one-third of people with autism remain nonverbal.
  • Around one-third of people with autism have an intellectual disability.
  • Certain medical and mental-health issues frequently accompany autism. They include gastrointestinal (GI) disorders, seizures, sleep disturbances, attention deficit and hyperactivity disorder (ADHD), anxiety and phobias.

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