Someone once told me “Little children, little problems.” It was years ago, and I was struggling with my toddler in the grocery store. This older mother knew something that I did not know. That these simple and small problems, when kids are babies, are fairly easy to solve. What she could never have prepared me for was the raising of a teenager with Aspergers syndrome (a type of high-functioning autism).
I am a speech-language pathologist by trade, and have worked with many individuals over the years, providing therapy for people with a range of different communication and cognitive challenges. I’ve loved the chance to give my patients and their families the tools and resources they needed to function better in their daily lives. But even as a trusted therapist (and for some families, a friend) I was always the outsider. I never had a vested interest in the persons I treated. Whatever happened, I could walk away.
It was a different story when it came to my own child. We have a son diagnosed with Aspergers. Our son showed differences from his peers beginning when he was a toddler. He had difficulty with flexibility in preschool. He took language literally. He was intensely interested in only a few subjects, did not intuitively understand social skills, and became easily overwhelmed. In the early years we adapted our son’s environment to support his sensory needs. He benefited from deep pressure, and his occupational therapists taught us ways to support him at home and school using the Alert-How Does Your Engine Run? program, and the Wilbarger brushing protocol. When he got to school, we put accommodations into the classroom (he needed a posted schedule and warnings for any changes like a fire drill, a substitute, or a holiday party). We modified his homework assignments. I carefully adapted school field trips. Some we skipped altogether. Others we researched ahead of time, so he could see photos of the place, and the activities they would do. I, or my husband, took him in our car (no bus, which was too overwhelming for him). He was tested and qualified for school services. We set up his IEP (individualized education plan). I advocated for him, and educated the teachers at his school.
He got an AlphaSmart to use in school to type papers and reports rather than handwrite them. That made a huge difference and he went from 1st grade-like writing to grade-level (5th grade) overnight. We always knew he had something important to say! His social skills programs in school were very useful in explicitly teaching him the correct words and behaviors to get along with his classmates. I taught him from Michelle Garcia Winner’s Social Thinking program, and I remember when I showed my “little professor” that others had thoughts that were different from his own. We adapted camps and family trips (or gave them up altogether). Each year our son did better than the year before. We learned not to compare him to other kids his age. We only compared him to how he did a year ago. He lagged behind his peers, but was always moving forward.
In middle school and high school he learned to navigate his classes, activities and obligations. He rode his bike to school. He had a part-time job he enjoyed, and worked hard at. He had classmates who were real friends to him. He got his driver’s permit. He did his chores, and walked the dog. Today he did his exercises by swimming in the pool. Then he worked in my garden digging up the hard clay soil in order get the ground ready for new vegetables. I’m so proud of him. He’s come so far. These are the shining moments. Sometimes I look at him and I think “The autism is behind us now.” Then some point of stress, discomfort, or perceived insult comes up, and my son melts down, or yells and calls people names, or generally upsets his family and others around him. All the words and behaviors we’ve worked so hard to extinguish come flooding back. And we have to take him aside and support him, and teach him again.
Then I hear the other parents saying, “What’s wrong with your son?” More to the point,”What’s wrong with you as a parent, that you can’t teach your son to control his words and his behavior?” These come from folks who have typically-developing kids. It might be said outloud, but often it’s a look or gesture that condemns me. Or a question disguised as compassion. My parenting confidence starts to shred. One of the hardest things about Aspergers is that it’s an invisible disability. Look at my son and you a see a kid that looks like everyone else. Spend time him, get to know him and you realize he’s unique. He does not experience the world like you.
Now with all this neurodiversity, throw in adolescence, with its emotional sensitivity, self-centeredness, impulsivity, desire to “individuate” and all the rest . . . and sometimes, I just wonder if I’m gonna get through the day, or the minute! If you have a child like this you may know my world. And right now I am trying to make my home a peaceful one. I am trying to keep my expectations realistic. I’m trying to help my son. It’s really hard. Some days I don’t feel like I’m gonna make it. But I know I just have to hang on. I know how to hang on. I’ve been practicing hanging on for a long time. I know things are going to get better. They always do.