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. 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.
For children and young adults with autism, they are 40 times more likely to die from injury. More than 40% of these deaths occurred in their homes or residential institution and the last sickening stat I'll throw into this cesspool of great news is that suffocation, asphyxiation and drowning are the leading three causes of fatal injuries in people with autism.
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.