I was intrigued by an interview I heard with Robert Hoge who wrote a children's book, a memoir about being ugly. Hoge was born with severe birth defects - his legs were malformed and ultimately both had to be amputated. While he quickly adapted to walking with prosthetics (that he quickly shed after school, having learned to move about quite well without them), it was his face that inspired the book.
Hoge was born with a large tumor right at the bridge of his nose. The tumor was able to be removed, but it's growth totally absorbed his nose and resulted in a severe spreading of his facial features. It was years before his eyes were moved enough to the front that he could focus on one thing at a time instead of seeing more like a fish or other creature that has eyes spread on both sides of the skull. He endured countless surgeries and made the decision at 14 to pass on the "big" surgery that would, said the doctors, make him look good, but there was a catch (that I won't reveal, to avoid spoiling the story more than I have). His story was compelling and well worth the read, for adults, children and, I believe, particularly for kids with autism and other developmental disabilities.
People with autism and other DD's often become aware of how "different" they feel, and it can cause a great deal of distress. I hear it all the time from them in different ways. Younger kids who just don't wan't to be different without the ability to articulate why. College kids with HFA who, despite their valiant efforts can't find the romance they see all of their friends achieving. We all want to "belong" to the "group." Social relationships are critical for us, even for many people with autism who might not as connected with others as we think they might. I think there are lots of folks with autism who don't feel the strength of social connection that NT's (neurotypicals) feel, but feel connection - or want to - none the less. Their awareness of being different interferes with their ability to connect at the level they care to.
Hoge had an awareness that I thought was wise beyond his elementary years when he came upon it. He began to notice that he wasn't the only person who was different. There was the kid in a wheelchair. Another kid who need more academic help. And others who had their unique differences as well. As Hoge put it, he noticed that he just had "different differences."
Different differences. What a beautiful way of understanding the variety of the human condition. It's something I've already encouraged some of the kids I work with to consider, to read. Because after all, aren't we all different? Accepting the reality of who we are, warts (or tumors) and all is often a very long and difficult struggle. But it's a struggle that's worth it.
