I recently saw a discussion of a book written by the father of a boy with autism in the New York Times. The author has been asked whether he mourned for his son when he found out that he has autism, as many parents do. It seems to me that this is generally considered to be a healthy (if not necessary) response by parents in order to adjust and accept their child. This is such a common question and topic for autism parents, but for some reason I had never thought before about whether or not I had done this. I haven't. I tried to explain my reasons in my response, which I have copied below:
I love the focus this author has put on connection with his son. Connection has been my primary goal all along with my son who is mostly recovered from autism. Mourning isn't the right word for how I felt when my baby's shining and outgoing personality faded away after his first birthday when he regressed into autism. I was terrified that we may never see that incredible personality again, that personality that we had fallen in love with. I felt angry that the negligence of others led to my child being injured in such a way that he lost the ability to communicate and spent his days screaming from physical and emotional agony. I place no value on "normal" and never mourned the loss of it, but I did shed many tears over my child's unnecessary suffering.
He wasn't gone and I knew that if we could figure out what had happened to him, what had caused his autism, he would shine again. I've always known that the autism was not "who he was" but "something he had". With research and medical help we discovered what was at the root of his autism (mitochondrial dysfunction and immune suppression that led to neuro-inflammation and viral encephalitis among other things). As we healed his body he has always been free to be however he chooses. He chooses to be socially outgoing, playful, and engaged in the world around him. All of those amazing abilities of his? He has them even more- they were never part of the autism, they are his.
We encourage him to define for himself what his autism has meant for him. Still, as his body has healed and his abilities have come back, he has embraced them. His autism symptoms were never something he chose. Recovery has never been about changing who he is, it's been about removing barriers to him becoming who he wants to become. Now the world is his oyster and I can't wait to see what he makes of it.
