By Dan Coulter
My wife, Julie, and I were in church before the service recently and a woman came up and told Julie how nice it was that she’d brought our son Drew to their Sunday School class last week. “You really can’t tell that there’s anything…” She didn’t finish the sentence, probably realizing how something like “anything wrong with him,” would sound. Her heart was in the right place, but her confusion demonstrates that we’ve got a ways to go in finding appropriate words and phrases to describe the challenges of people with Asperger Syndrome (which Drew has), with autism, and with similar conditions. I think, to her credit, she sensed that the word “wrong” wasn’t appropriate.
And she was right. Yes, Drew has Asperger Syndrome –- and there’s nothing wrong with him.
This is more that just simple semantics. It’s complex semantics. The words we use to describe people color our perceptions. Many of the words used in association with neuro-biological challenges can be traced back to a time when people thought such challenges were a vengeful God’s punishment for somebody’s sin. If there’s something wrong with you, it suggests you’re different in a bad way – and you’re separate from what’s “right.” The word “wrong” is also strongly associated with the word “mistake.”
Our kids on the autism spectrum can be very different. Those differences can be difficult, even heart-wrenching, but the words "wrong" and “bad” don’t apply. And our kids are not mistakes to be discarded, excluded or fixed. They’re people with challenges. In that sense, they’re just like the rest of us. Some just have higher obstacles to overcome and sometimes they have to find ways around these obstacles instead of climbing over them.
Too many folks see themselves as “us” and people with mental differences as “them.” And they can pass those prejudices on to their kids. We’ve run into people who don’t want special education kids associating with their kids in school because of fears the special ed kids might hold their offspring back. We’ve encountered parents who don’t want school districts to spend money on special ed because they’re afraid it might drain money from “regular” or “gifted” education resources.
Getting angry doesn’t help. Or rather, what helps is to get angry enough to do something, calm down, and work to help people understand that we’re all part of the same community. We’ll all be better off when there are no “us and them” distinctions in our community and all the kids are part of “us.” The fact is, we all benefit from projects and resources that help make people with mild or severe mental challenges become as independent and productive as possible. Just as we benefit from making typically developing and gifted kids as independent and productive as possible. These are artificial classifications anyway. I’ve met lots of kids with AS who are also in honors or gifted programs. The bottom line is that it’s in all our best interests to have as many of our kids as possible prepared to work and pay taxes and as few as possible on public assistance. Giving each child the assistance he or she needs now is an investment that will pay off for everyone, and it’s right in line with the American philosophy of offering every child a free public school education.
The best way to foster that investment is to build a sense of community. To reach those folks who are receptive and to generate enough support to outvote folks who just don’t get it and who can’t see past their own immediate interests.
When I was a kid, I got a lesson in community that I couldn’t fully understand until I was older. While in the sixth grade, I used to take “bike hikes” and ride out into the rural areas around Springfield, Missouri, where we lived. One day, a friend and I were biking through a neighborhood of a few houses on the outskirts of town. We saw a young man in his late teens or early twenties acting strangely. He was walking down the street, talking loudly to himself. Every few feet, he’d sit down and scoot a ways on his bottom. He looked dangerous to a couple of sixth graders.
My friend and I stopped at one of the nearby houses, told the woman who answered the door what we’d seen and asked her to call the police.
Her face full of concern, she looked down the street at the young man and told us that he wasn’t dangerous, he wouldn’t hurt anyone, and there was no need to call the police. He was her neighbor’s son and she’d call his mother to let her know that he was outside alone.
I’ve thought of that woman from time to time and I increasingly appreciate the role she played in her community. She was an extension of the young man’s family, caring about him and looking out for him. She was a good person. But more than that, she was a good person who knew her neighbors well enough to care about them.
I’ve run into a lot of caring people since that incident. Sure, I’ve also encountered people who are selfish and will never get it. But there are lots of people who don’t understand enough to care because they just don’t know enough about our kids. Chalk that up to a society where people move a lot, work long hours, drive places instead of walking so they often don’t meet their neighbors, may have minimal contact with school teachers and staff, and may not even meet most of the parents of their kids’ schoolmates. I think a huge number of these people have the potential to understand and care if we just give them a chance.
And while we’re on the subject of understanding, reaching out to kids is particularly important.
As part of our business, we make videos that help students understand classmates who are different. Some of the most gratifying feedback we’ve received came after a psychologist used one of our videos in a school assembly to help educate students about Asperger Syndrome. After the assembly, a number of kids came up to a student who has AS and apologized for the way they’d treated him. For the first time, kids started sitting with him in the lunchroom and including him in playground games.
The assembly helped establish a sense of community at the school that was just as real as the community I rode into on my bike as a sixth grader. It was confirmation to me that we have to use every opportunity to reach for the best in people and help them see the big picture.
You can help by talking to other parents about what kids with “disabilities” are really like, by encouraging your school to make presentations on inclusion to students and teachers, by encouraging your PTA to make similar presentations to parents, by joining with other parents to form support groups and to lobby school boards to offer programs that help all kids -- including special needs kids, by actively supporting school bonds that include resources for all our kids, and by encouraging your local news outlets to do stories that show kids with challenges succeeding.
These are all important steps in the crucial job of helping people understand that kids can have all sorts of strengths and challenges and, at the same time, have absolutely nothing wrong with them.
ABOUT THE AUTHOR: Dan Coulter is the producer of the INTRICATE MINDS series of videos that help students understand and accept classmates who have Asperger Syndrome and similar conditions. You can find more information and articles on his website at: coultervideo.com
Copyright 2006 Dan Coulter (Revised 2014) All Rights Reserved Used By Permission