As the mother of a son with Autism Spectrum Disorder (ASD), I spend a significant portion of my time dealing with the realities of life that come with it.
A significant portion.
I have a calendar pinned up on my kitchen wall that is covered with black Sharpie detailing our day to day schedule of appointments, therapy times, clinic hours — you name it. It’s almost a full time job in and of itself.
There is paperwork and data sheets that must be filled out on a daily basis and, of course, there’s also the aspect of simply living, teaching, feeding, bathing, changing and educating a child on the Spectrum.
You know, parenting. A job not known for being the easiest thing in the world — even with a neuro-typical child.
Now, believe it or not, I’m not complaining.
My 5-year-old is amazing and his progress through thousands of hours of the above mentioned therapy has been nothing short of astounding.
In the three years since my son’s diagnosis he has gone from non-verbal to you-can’t shut-him-up (I’m fairly sure that’s the technical term.)
Where he used to regularly hit and bite himself and slam his head against the walls or floors — to the point where my husband and I bought him a helmet — he now “takes deep breaths,” and tells others to do the same.
The once-strict diet of oatmeal for breakfast, PB&J for lunch and chicken nuggets for dinner has gradually been replaced to include a whole menu of items he’ll now eat without objection, at any time of day no less.
In short, it’s been a rough road, but we’ve made serious progress.
Still, there’s a long way to go …
On a friend’s recommendation, I recently checked out a new television series on ABC centering around a physician with ASD: The Good Doctor.
I knew the basic premise — and went in with an open mind — but guys, it made me so mad ….
If you haven’t seen it, the show is about Dr. Shaun Murphy, a surgical resident at a fictitious hospital with ASD and a tragic past often revisited through flash-back scenes.
He also is shown to have savant syndrome.
Murphy is portrayed as lovable, brilliant and completely (but adorably) socially inept. The few doctors on the show who object to his employment — citing very valid reasons, by the way — are displayed as insensitive jerks as best, egotistical bigots at worst.
Bottom line? They’re not wrong … Murphy, with his disorder, may be a great diagnostician — but he has a lousy bedside manner and frequently scares the crap out of patients with his inability to control his inner monologue about what they “might have.”
Again, this is all portrayed on the show as almost comic relief.
I am so sick and tired of TV and movie producers, creators and writers using ASD as a way to interject a “quirky character flaw” into a series or feature film.
I want to be very clear here, Autism isn’t cute and quirky. It is a devastating diagnosis that seriously affects the lives of those diagnosed as well as those around them.
It means spending the rest of your life dealing and coping with a serious neurological disorder.
“The Good Doctor” is not alone.
Netflix’s “Atypical,” the Bruce Willis film “Mercury Rising” and “Rain Man” have all tried to step into this arena before, with varying degrees of success.
My point? Knock it off.
You want to hear some real truths?
One in 68 babies born today will be diagnosed with ASD. If you already have a child on the Spectrum, the chances of having another drop to 1 in 5.
According to a study published by Autism Speaks, only 19 percent of adults on the Spectrum have ever lived independently away from their parents and only 30 percent attended a two or 4-year university.
Combine that with the fact that data shows just 32 percent managed to find a job within the first two years of leaving high school and you can see how concerning the problem really is.
Statistically, people on the Spectrum are 28 times more likely to commit suicide. Also, there’s a much greater chance a person with ASD will end up in a state-run facility.
In all, Autism services cost U.S. citizens $236-262 billion annually with a majority of costs in the U.S. coming from adult services – $175-196 billion, compared to $61-66 billion for children.
Write a TV show about that.
Kasie Strickland is the managing editor for The Sentinel-Progress and can be reached at firstname.lastname@example.org. Views expressed in this column are those of the writer only and do not necessarily represent the newspaper’s opinion.