I have been working with children diagnosed with Autism since I was 18 years old - work that I started because my best friend in high school had a sister, Gail, with physical and developmental disabilities. I fell in love with his family because they played and teased and talked and engaged her like any other member of the family. Gail was always "just Gail." Even though Gail didn't speak, she was absolutely present and an integral part of the family. She shared joy, wonder, frustration and anger just like everyone else in the family. One of the most important skills I learned from that friendship and countless others is how to be in a relationship with someone whose primary disability is relating.
With my own son Frankie, I have learned that Frankie is "just Frankie." He has an incredible take on the world and a way of distilling the essence of a situation in a simple statement. Many times the statements - though completely appropriate - are in the exact wording and vocal pitch of a movie character or someone else he knows. His sentences are stark and unadorned, completely without satire or irony. And because he is uncumbered by social niceties, he will often share his insights unsolicited. These can bring my situation into clear focus and, at times, they are so spot-on I can't help but howl with laughter. Max from Parenthood reminds me of this in the way his quirky outlook sometimes brings unexpected humor to situations - such as in this week's episode, when Max states that "a person is 1000 times more likely to drown in the ocean than be bitten by a shark" after Adam says that he enjoys surfing.
Recently, I was angry about one thing or another my 11 year old was doing and - as I was clearly reddening - Frankie walked by and in his best Yoda voice said, "Do not let your anger control you Roy." Another time, as I was sitting frustrated with a program on my laptop computer, he looked over my shoulder and said, "You know, you can always walk away." These are amazing moments for a child who practically didn't speak until he was 5 years old and spent most of his early years having one tantrum after another.
Just like Max in this episode, Frankie and other children living with ASD view the world from a different perspective. While at times this can cause no end of difficulties for them and their families, it is also this very quality that is one of their greatest gifts to those of us who are fortunate enough to know them.
All of our children bring us joy and tenderness along with worry and frustration. Our children affected by ASD are no different. Many years ago - when I was bemoaning all the time and effort and worry involved in caring for Frankie - a good friend of mine asked, "What exactly did you expect from being a parent?" I answered, "I wanted to watch a child grow and learn and love and to love him in return." He asked me, "Are you getting that?" And of course I said, "Yes. " I wanted to protest, to tell him that I wasn't saying I didn't want be Frankie's parent, or that I didn't love Frankie, but that was beside the point. As I have learned over the years, the most important lesson is that Frankie is "just Frankie," and the thing to do is to embrace all of the wonder and adventure that entails.
Written by Roy Q. Sanders, M.D.
