From my book: Children with High Functioning Autism: A Parent’s Guide available from Amazon.com and in stores at Barnes and Noble
An Unplanned Journey Between Holland and Italy. Switzerland?
It’s important to know that no one CHOOSES autism- you, your child, and your family were drafted. You need to remember this when teachers, mothers, and total strangers feel free to tell you that you’re using autism as an excuse for ________ (Name your issue here- misbehavior, laundry piling up, financial failure, your lack of showering…). And just like being drafted and being shipped off to another country, autism will change your whole life- your plans, your dreams, your family structure, your relationship with your local grocery store. All will be different than you expected- and not always in a bad way. Just… different….
“Welcome to Holland” is a poem originally written for a child with mental retardation. However, it is an analogy I deeply related to: you think you’re going somewhere and suddenly you’re not there. However, autism is more like the Wizard of Oz- you THINK you’re just like all of your friends; you THINK you’re on the way with a clearly defined map, when you start getting strange signs that things are not the same as all of the Baby Books would have you believe. I had read the “Girlfriend’s Guide to Pregnancy” and laughed so hard, I was sobbing. (Seriously, my husband was concerned about me. Perhaps an over-reaction to hormones….) However, I truly bawled when I read the “The Girlfriend’s Guide to Toddlerhood”. That wasn’t what I was seeing. I didn’t get to laugh at funny sayings my kids were doing. I had the child who wouldn’t leave the swings. I didn’t have that map anymore…
Autism is so insidious because, to use the Holland analogy, for a while, you ARE in Italy. The language spoken for a while is Italian- the food, pasta. But in small pieces, the language changes. The people change. The activities change. The landscape changes. It reminded me for a while of one of those Star Trek shows where you were part in one world, and part in another.
There are several different metaphors about autism out there. In her book “The Autism Trail Guide: Postcards from the Road Less Traveled”, Ellen Notbohm notes how having a child with autism is like being on a strange trip, and that you have to communicate with others that you’ve arrived safely and that you want to share your experiences. In contrast, Karyn Seroussi calls autism “The Jabberwock” and talks about defeating this disease that causes autistic behaviors. She also talks about saving children from the “Pied Piper” of autism. It’s interesting the differences of metaphors- to some it’s a scary demon thing; to others, a process, a journey.
And that’s autism. Something to be fought against while at the same time trying to understand the journey. It’s both a process and a condition. It reminds me a bit of trying to capture the dual nature of light. Scientists have found that when they provide a substance to react to, light clearly acts as a particle. When they provide a slit, it appears to be a wave. Autism is both something our children have as well as being someone they are. It’s a really fine line between “quirky” and “problematic”. A gap between “typical” and “not right”. Somewhere between “Cute and hmmmm”….