After our son Frankie was diagnosed with Autism we were devastated. We entered a brand new world of hopes, fears, restrictions, new commitments but mostly fear - his and ours. For many children with Autism Spectrum Disorder/Asperger's the world is a very scary place. I have been told by older children and adults I know living on the spectrum that things in the world just don't make sense, especially when they are younger. As a consequence the world can be a very scary place, whether it's Halloween or not. And it is not only scary for the children living with the spectrum but for the parents as well.
Like Max, our son Frankie was afraid of all sorts of things. He was afraid of elevators, thresholds, haircuts, baths, certain cartoons, certain people, and other completely indiscernible objects and situations. It was like living in a minefield. We were afraid of his reactions, how others would react to him and how we would react. We were often immobilized by our fears that were part and parcel of his fears and rigid, restrictive behavior.
Over time, however, like the Bravermans we learned to grow with Frankie. One instance that comes to mind was when Frankie was about five years old and we were having dinner with some old friends who have an adult daughter on the spectrum (she now lives near them in supported living). I was trying to corral Frankie and keep him out of trouble and out of a "meltdown" when the mom looked straight at me and told me something I will never forget. She said, "You know he has the same right to fail that every other child has." I just looked at her dumbly until it gradually dawned on me what she was trying to say: That I couldn't let Frankie's fears or my fear of Frankie's fears stop us all from living or stop him from having the chance to learn and grow from his mistakes.
Ever since then I have tried to always follow Frankie's lead. I let him give us clues about how much he can handle. Granted, there are times when I push him too hard and we have the meltdowns. There are other times when I don't push enough or I don't allow him the opportunity to push himself. It is a constant dance - like all of parenting - but it is a dance invitation that you must accept for your child and ultimately for you.
Parents of children diagnosed with Autism Spectrum Disorder/Asperger's spend a great deal of time hoping and praying their child could be "normal" or more "typical." Sometimes when the opportunity to allow just that occurs (Max wanting to go trick-or-treating on Halloween, for example) we are so paralyzed by our own fear and our fear of their fears we allow that opportunity to pass. A friend of mine who lives on the spectrum with her son has written a wonderful blog about their experience that's captured by its quirky title: "Cheeseless Pizza and Other Philosophies of Life." There is a dance we all dance with our wonderfully "quirky" children and the joy and pain that comes from living on the spectrum. Like the Bravermans, we all have to let our children take the lead and guide us through the minefield of fears - while we do our best to figure out when it is our turn to lead and when it is our turn to follow. We all have the right to fail/fall so we can learn from our mistakes.
Written by Roy Q. Sanders, M.D.