We can’t smile through it all
It’s not reasonable for us parents to be optimists all the time. To smile through it all. To experience no moments of disappointment when faced again and again with the challenges our child has been given.
On most days, I see the glass half-full with Charlie and his autism. On days when I don’t, I’m the first to feel guilty. In those better moments, when I see Charlie rubbing the rice from his disassembled sushi all over his face, I think “that’s neurodiversity! That’s Charlie. Hey, at least he’s eating salmon!” Most of the time, I am accepting of his quirks and stims, as messy as they sometimes are. However, when he screams from the top of his lungs or hits his own face out of some unknown frustration, in those moments, I just can’t get myself to do it, to celebrate autism. When he runs giggling toward the street with no appreciation for the danger he’s in, I don’t celebrate the autism that brought this on.
Raising autism awareness means not forgetting anyone
There’s a way to raise awareness about autism which doesn’t minimize the struggles that the diagnosis often brings. There’s a way to show the world how of course autistic people deserve love and empathy as much as everyone else—as much as you and your kids—without only advertising autism as a secret weapon that allows those with its gift to solve impossible puzzles with their superhuman skills.
In the media, you see the autistic child who became a doctor. You hear success stories, not entirely unlike my own. These stories are great! They’re great, as long as we also show the full spectrum of the spectrum—the individuals without extraordinary skills, and the ones like Charlie, too, with severe autism. For many, autism is simply a disability. It’s a disability that prevents them from living on their own and perhaps even understanding that concept.
For many autistics, the goal they celebrate isn’t becoming the doctor, it’s simply going to the doctor without someone else’s help. And you know what? These stories should be heard and celebrated too. They’re just as real. And even more common. For the individuals and families involved, these are the goals they shoot for and the milestones they celebrate with just as much joy. And for the countless others out there like them, I want them—no, us—to share in that joy too, to celebrate together.
1 Comment
Arthur Golden
2020-01-14 at 3:35 AMWith more extensive ABA, I think my adult son Ben who is completely nonverbal and severely autistic could have at least learned to shower himself but I guess I was too lazy and I still shower him at age 48. Anyway, when showering him in November 2017 I noticed an enlarged left testicle. I won’t describe the efforts to arrange surgery to remove the left testicle which showed testicular cancer. The follow-up CT showed enlarged lymph nodes in the abdomen requiring 18 sessions of radiotherapy, requiring him to be sedated because he cannot lie still for less than a minute. Subsequent CTs so far are clear. Thank Heavens universal health care in Israel meant no cost for his treatments, and even free transportation was available to the hospital.