There is no cure for autism, but we've had solid peer-reviewed evidence for decades that Intensive Behaviour Intervention (IBI) based on the principles of Applied Behaviour Analysis (ABA) can have a dramatic impact on the development of kids with autism. Unfortunately, the treatment is not covered by medicare across the country.
Too often well-meaning journalists get it wrong when they write about autism. It's not so much the content of their stories that misses the mark as the language they use to describe autism itself. Reflecting on autism in a more nuanced manner using these basic pointers can help you avoid simplistic depictions and understand the true, lived experiences of those on the autism spectrum and those who support them.
Our son, Casey, has autism, a neuro-developmental disorder that is often characterized by rigid and repetitive behaviours, difficulty with social communication and uneven intellectual development, among many other challenges. Regular participation in an integrated public school has not always been easy for him.
Over the years, Autism Canada has talked to thousands of parents and there has been a similar refrain. Early diagnosis didn't happen for their children because too many well-intentioned health practitioners and educators dismissed early red flags and parental concerns in favour of a "wait and see" approach.
My husband and I recently received a note home from the school teacher of our eight-year-old son, Casey. She wanted to inform us that Casey had been caught lying about a misdeed, and that this wasn't the first time. Our response? We whooped and high fived. Yes, that's right -- we gave each other a high five. Why?
It's not an exaggeration to say we have an autism services crisis in Canada. Evidence shows that proper health and educational supports for those affected by autism pay off. Early intervention is key and heads off more expensive and extensive supports that are needed later in life if early intervention is not provided.
Many organizations and affected families across the country have been calling for a national autism strategy. The wide range in disparity of publicly funded services for autism across the country has even generated a kind of "medical migration" with several published accounts of families leaving their home provinces (most commonly, Atlantic provinces, Ontario and Quebec) to move to Alberta or British Columbia where autism services are more readily available and/or more flexible. It is also no longer uncommon to find Canadian families using crowdsourcing campaigns to fund their children's autism and related therapies.
The problem is that an ASD is a permanent neurological disorder; it doesn't go away, but rather confirms itself over time. As parents of children with special needs, we each have to find our path. Over time, we all find our way. For me this was, and continues to be, a lesson in acceptance and redefining my values.
As important as research is, I truly don't believe this should be the number one priority when discussing how to improve the lives of people with autism. How is research helping the autistic individuals living in our society today? The ones that are stigmatized for who they are; the children who are on waiting lists for government funded therapy that unfortunately never comes and whose parents are forced to go privately, depleting finances at an astounding rate. They are not part of an incomplete puzzle. They are here, they are whole and they are deserving of equal opportunities.
It was an ordinary summer day. People were milling on the main thoroughfare, bikes zig-zagging through traffic, cafés and pubs spilling onto the sidewalk, patrons sipping their way through a lazy Friday afternoon. We were ordinary that day too. Just another family, managing the hectic jumble of kids' lessons, bills, our careers, endless streams of birthday parties, too little sleep and the occasional date night out. But it was all shattered with a single word: autism.
There is no question in my mind that parent training has made me a better parent. While there is a difference between the theory and practice of ABA therapy and while there is a difference between being a parent and being a therapist, the knowledge gained from the parent training offered by our early intervention team has been invaluable.
Marie Josée explains that there is a beautiful innocence in ASD. A person with autism will never try to manipulate a situation to make themselves look better. They are without malice, and they don't know how to pretend. I say what I need to and I don't mince words! My partner can attest to this. He knows I'm different, that I like to talk about stuff that is real, and he accepts me as I am.
April 2 is World Autism Awareness Day, and April is World Autism Awareness month. Unfortunately, it's no longer uncommon for most of us to know families struggling just to keep up with the day-to-day tasks required of them because they have a child with autism. Here's how you -- as a family member, friend, neighbour or even just as a friendly acquaintance or concerned citizen -- can help families affected by autism.