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.
We are a long way off from identifying definitive biomarkers and personalized gene therapies are likely generations away. The hype is big, but our hope is misplaced. The science isn't there yet, and the sooner we stop putting our faith in near-miraculous breakthroughs, the sooner we can realistically survey the options at hand.
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?
I'm not entirely sure why I write about my personal experiences parenting a child with autism for the mainstream media. Mostly I hope my own experiences may help someone else on their autism journey -- and they won't stumble through, as I have done in the early days. But what I'm never quite prepared for are the letters I get whenever I publish something about autism in the mainstream press. Here are a few responses that never fail to happen.
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.
"It is with sadness that we will have to decline the birthday party invitation for your son," one mother wrote me, "as such short notice was given." I felt like I had been punched in the gut. Again. You see, my son Casey has autism, and I had been busily planning all the arrangements for his seventh birthday party for weeks. I wanted to tell her, in earnest, that I had tried, I really tried, to get it right this time.
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.
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.
While watching the Sochi Olympics this past February I was blown away by the prowess of these young athletes defying the laws of gravity, and surprising me at every turn. Then one night I thought to myself that actually, our lives as parents with autistic children are kind of the same. Except we don't win a medal at the end.
I decided to bring to light some information that people should know about Autism Spectrum Disorders (ASD). With a growing number of children living with an ASD, this information will help you better understand the experiences of these children, and their parents. The following are my last five points, though there could have been many more.
I recently noticed that for the most part, when I talk about Autism the people around me don't really know what I am talking about. They all seem to have a vague idea about the problem, but no more. I constantly have to repeat the same information. This demonstrates clearly that we still need to educate people about Autism or ASD.
"Your son lives in a parallel universe." That was the first blow. A harsh sentence uttered by the teacher in charge of the little family daycare center my son had been attending for a few months. It was announced that our son had a "problem." That was in February 2012. A lot has happened since then...
Many kids on the autism spectrum find it difficult to navigate the unstructured nature of the holidays, while at the same time they don't seem to get enough recreational or creative opportunity. Here are a few ideas that just may shake things up a little, and keep us all from experiencing the post-holiday crash.
For years, recess was a sensory nightmare for my autistic nephew. I watched him pace around the perimeter of the playground alone. Enter our gifted consultant. She told me to be out of sight, and let him fall apart and let him and his friends pick up the pieces. I was horrified. Let him cry? Let him scream? Really?