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.
In the 18 years since Kilee was diagnosed, David Patchell-Evans' evolving understanding of her condition has mirrored changes in the way scientists talk about autism. From an incurable disease to a spectrum that will affect one in 68 children, we now view autism as a range of conditions that are distinct in every individual.
Imagine watching a movie made by someone with autism, rather than about someone with autism. Wouldn't that be a refreshing change from the norm? Individuals with autism found themselves the subject of countless documentaries and feature films rather than the creators and the mavericks calling the shots.
We should have known from their birth that this was going to be a lifelong battle. I remember after the twins were born, listening to other new moms brag how their kids were sleeping through the night at three months old and secretly hating them. I remember trying all the same things I had done with my first and wondering why it wasn't working with O and W. 1 to 3 hours of sleep for their first 18 months would destroy the strongest of men but somehow we survived it.
People with autism are not all violent, unthinking, unfeeling or uncaring, incapable of progress or love. When supported in a loving environment and by people who believe in them and their potential locked within, most of the kids can go on to be very successful and lead fulfilling lives with loving relationships.
He doesn't have a "special" talent. In fact, less than 10% of the autistic population have some kind of savant talent. When you ask about his "talent" and he knows that he doesn't have one, he feels less. He feels as though he is being judged for being "wrong" yet again. I hug him and tell him that you mean well, and that the drawing he did of Spider-Man really did rock! What I wish you would ask instead, is this.
Autism officially entered our lives on June 7th and then again June 14th, 2005. Not only was this new territory -- it was no man's land. Scary quicksand territory. Never before had our parenting skills been put to the test as it was in the latter half of 2005. Not just our skills, but our belief in ourselves as parents.
Recently, I have become aware that something seems to be happening in our little autism family bubble. I'll name it Autism Fatigue. After 13 years of nothing coming easy, 13 years of aforementioned preparation and coaching, and teaching and coping and surviving and striving and advocating and fighting and praying.. I got tired. Christmas had fallen to the wayside, and Halloween was next.
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.
The child with ASD must learn to identify a broad range of emotions and corresponding facial and body expressions, then encouraged to tune into their bodies and rate the intensity of their emotion using a "feelings thermometer." We feel what we feel. Although our emotions are always valid, our thoughts about a given situation are often skewed and in need of revision.
When my husband answered the phone you gently took over the job of restraining my son...something that no public servant has ever dared to do. We've had teachers and support workers tell us that they're not allowed to touch a child, even when it's a matter of keeping our son safe. But you held him firmly and respectfully, as gently as you could, without a trace of anger or fear on your face. "I have a lot of experience with autistic kids," you told me, and it showed.
What kind of mom drugs her kid? The mom who is tired of walking on eggshells, wondering who her child will hurt today. The mom who is tired of watching her baby suffer inside his own skin. The mom who, fighting back tears, dutifully takes the scrap of paper from the doctor with the round glasses.... What mom does that, anyway? The kind who will do whatever it takes to help her child feel better, even if it means doing precisely the thing she vowed never to do.
Blended families don't feel in unison or in sync right off the bat; it's not something that happens overnight. It takes patience, love, understanding, compromising and time. In our case, it took us a few years before we felt in sync, like a real authentic family. Having a child on the autism spectrum made this journey even more delicate.
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.
Nowadays, businesses are not only more aware of autism, some are willingly offering special accommodations. They are meeting families where they're at -- so kids like mine can enjoy what's on offer along with everybody else. The following autism friendly attractions is by no means exhaustive, and I would love nothing better than to see this list grow.
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.