When Jonathan was first diagnosed with autism, one of the most frequent comments I would receive was “Oh, like Rain Man?” At first, I was relieved and thankful that there was some well-known reference to autism. Then, I began to wonder if that was all people really knew or understood about it. I decided to use those opportunities to educate, inform and empower a better understanding of what autism was like beyond what was portrayed on the big screen.
Being out in the public eye was and remains one of the biggest stages for my role. I cannot count the number of times I would encounter stares, comments and even outright glares when Jonathan would become upset or acted in a manner that others disapproved of. My response to this depended on the moment, my mood, or the person watching us like we were the opening act.
We have all experienced a front row view of a child misbehaving, and the usual assumption is that the child is spoiled or the parents are clueless. For some, the scene is just too much and they feel compelled to direct the outcome. There are those who do so with kindness and compassion, and there are some who do not. My response has typically been to educate in defense of my son because you can’t tell he has autism unless you are already familiar with the actor. I try to remain kind in my responses, however on one particular occasion my performance was less than stellar.
I bravely decided to venture to the grocery store with Jonathan and Cassie, who were five and two respectively. Things started out pretty well and I had a short list so I was feeling like the scene would end as scripted. Then we hit the checkout lane, where there was enough candy to feed an entire cast and crew. Cassie was buckled in the cart and I was holding Jonathan’s hand, until he began squirming. He began to yell as his efforts to reach the candy were unsuccessful. When I had to let go of his hand to reach for my wallet, he pulled quite the stunt. He proceeded to climb up onto the conveyor belt, almost landing on the man’s groceries behind me. I struggled to get him down as his yelling increased. At that moment, the man behind me caught my eye and as if right on cue said: “Well what’s wrong with him, is he r******d?”. His question stunned me and prompted my ad lib response: “Well no, he’s not. Are you?”. If it had been a movie, I would have yelled “Cut”.
Recognizing my error, I went to do another take. I asked him if he had seen the movie Rain Man. Thankfully he had, so I had the opportunity to educate him with Jonathan in my arms and Cassie in a grocery cart as we both exited the store. Like many, he was unaware how different autism could look outside of its portrayal on the big screen. But because of that movie, he had an awareness that autism existed.
While Dustin Hoffman gave a brilliant performance portraying a character with autism in Rain Man, it is Jonathan and countless others on the spectrum who are the reel deal.