If the prevalence of an autism diagnosis is currently 1 in 88 kids in Maine, and 1 in 110 in the nation, why do we feel so alone?
Early on in our autism journey with Jake, we often had people come to us on the street and tell us how proud of us they were that we “took him out.” Why in the world wouldn’t I “take him out?” He’s my son. He’s my flesh and blood and he’s a part of my family. He goes where I go.
I began to realize that it was up until very recently that if a family had a special needs child, they might keep that child inside the home for their whole life. Nobody would get to know this kid. At a recent conference, a grown woman said she grew up with a sister who wasn’t allowed to be seen by the public; and this is only ONE generation ago.
Is it pride? Is it the idea that if we give birth to imperfect children, we’re somehow less “perfect” ourselves? Are we ashamed of our special needs kids, and therefore segregate ourselves from others?
Could it be that our kids, especially those with autism, are at their best when they’re in their own homes, with their own routines, and that outsiders are often disruptive to the fragile peace? Is it because it’s sometimes impossible to bring our kids to other people’s homes, so families circle the wagons and isolate themselves?
Is it because it’s so hard to find quality babysitters who understand why our kids can’t just be yelled at to behave, or why they perseverate on things, that keep couples from venturing out and being social with others?
Maybe it’s because kids with autism make poor spokespeople. I can picture Jenny McCarthy raging about vaccines, and pushing for healthcare reform, but I can’t remember ever seeing her son. Even one of the most famous and influential people with autism, Dr. Temple Grandin, lacks charisma. There is no uniting face of autism.
Maybe it’s because our experiences are so unique. As I love saying, “If you’ve seen one kid with autism, you’ve seen ONE kid with autism.” There aren’t many people out there who know EXACTLY what it’s like to walk a mile in your shoes. Sure, we have similar stories, but maybe there are too many differences for true unity.
Search autism on Google.com and you’ll get literally millions of returns. Search Twitter for #autism; it’s endless. Why are we all fighting individually? One of my favorite daddy blogs, Lost and Tired, is about a guy named Rob with three kids on the spectrum, and he’s LOST and tired. Why is Rob lost if there are so many of us?
Coming from a small town, and being part of a great church and good-sized family (not to mention airing it all for the internet), there aren’t many who don’t know our story, but very few who really understand. I admit I get lonely sometimes, too.
Why is that?