I am no longer the mother of a child with Asperger Syndrome. I am the mother of an adult with Asperger Syndrome.
The world of families who have kids with autism spectrum disorders has changed a lot in 30 years. This is how long I have been living in this alternate universe. Thirty years ago, Asperger Syndrome wasn’t even a diagnosis, though approximately 1 in 10,000 children were suspected of having autism. Thirty years ago, many doctors still felt that mothers caused their child’s autism by failing to bond with them at a critical stage of development. Thirty years ago, the law that guarantees children with disabilities the right to attend an appropriate individualized program at their local school district was only seven years old and barely utilized in Texas. Thirty years ago, a family had few if any resources and the average family knew almost no one with an autism spectrum disorder.
That was yesterday, but now the Centers for Disease Control say that 1 in 110 children living are living with an autism spectrum disorder. This means that almost everyone knows someone who is affected by autism. Today there are literally hundreds of intervention programs and resources available to families. So many interventions are available to families that it makes it almost impossible to sift through the available options to narrow down the intervention that will work for their child in their family context.
Unlike some people who seek to find a cure, I seek to celebrate my son, as I now know he doesn’t need to be cured. Yes, I would also celebrate a cure if one were available, but one’s not. Autism is not a disease. It is a different way of looking at the world. It is a different way of processing and interacting with the world.
When I was expecting our first-born son, I dreamed of all the things we would do together. I believed that we would “fit” him into our family, into our dreams for a family. Little did I know, I would have to “fit” into his world and my dreams would have to become his dreams.
Children with autism spectrum disorders think differently, perceive differently and learn differently. That’s a fact; no changing that. They cannot learn the way neurotypical children learn. As a parent, I had to learn how he could learn and adapt the way I taught to the way he could learn. He was unable to change. I was able to change. I have learned more from him than he has ever learned from me. My son has taught me the beauty of things I never considered before.
Before he was born, I never considered how train and aircraft traffic flowed in organized patterns across America. I never knew how much air went in an airplane tire. I never knew anything about spacial relationships and computer-aided drafting and design, but these are things that came naturally to my son without any help from me.
Before he was born, I never considered why I do most of the things I do. I no longer take social rules for granted. I now know why they are necessary, because I’ve had to dissect each social skill and make it make sense for my son. Thanks to him and many of my students, I also now know that lots of things I thought were important, are not really important at all. Who says a child can’t survive on ten foods? Who says a child can’t wear a coat in the summer? Who says a child must like certain activities at certain ages?
My son has taught me that relationships and friendship and interconnectedness is what’s really important. He’s spent his whole life grapple with these concepts that I take for granted. He has taught me the importance of freedom and civil rights, the importance of tolerance and acceptance. He has taught me to understand what a precious gift it is that I can function with constant change and in confusing situations. So I no longer care if he’s like other people, entertains himself like other people or wears the latest style.
If I could give family members of children with autism spectrum disorders only one piece of advice, I’d tell them to spend all of their time and money learning from their child. Yes, I understand that for children with autism spectrum disorders to be successful, parents will always have to teach their children how the world works and what the world requires of them. This is not an anti-intervention blog. It’s an blog to encourage parents to accept and learn from their children as unique persons. The world could use more of their straight-arrow thinking and meticulous honesty.