We participate in many autism-related activities and of course, The Prince knows that he attended lots of therapies which other children did not have to do. But he accepted it, worked hard, and is doing really well, all things considered.Yesterday, the news was on while I was making dinner and the Prince was helping me. A story about a local autism event came on. The reporter interviewed a very verbal teenager with autism, who had the same name as The Prince. “Hey, he has autism and he has the same name as me!” said The Prince. Then he said, “But he is a teenager, only children have autism, right?” I said that no, teenagers and adults have autism too. That you are born with it and you still have it as you grow older. Then he asked, “Does it ever go away?” My heart sank.
I told him that no, it does not but that many things that used to be hard, like talking for instance, get easier when you work on them, like he has. Talking used to be hard, and now it is not. I tried to frame it within our own family. I said that The Professor has asthma, I have cancer, and his Aunt has Celiac Disease. We all just need to be more careful of our health and none of these conditions can stop us from doing what we want to do. That seemed to satisfy him for the moment.
Then, I said something that I would later regret. I told him that people with autism have brains that work differently from other people. In some ways, their brains work better, for example, I told The Prince he had a better memory than most people. But in other ways, there are challenges, such as when the Prince is upset by loud noises. I thought all was well and felt that it had been a pretty good conversation. I was also proud of his self-awareness.
Earlier this week the Prince had learned about organ transplants, a concept he found very interesting. Last night I found him researching “brain transplants” online. I asked him why. “Maybe if I can have a brain transplant, I won’t have autism anymore.” He didn’t seem especially upset, just sort of matter of fact, but I felt terrible. So much for saying “your brain works differently.” I still feel sad about this.
Now what do I do? I just bought John Elder Robison’s book, Be Different: Adventures of a Free-Range Aspergian with Practical Advice for Aspergians, Misfits, Families & Teachers. I loved Robison’s autobiography, Look Me In The Eye and wish I could have him talk to my son about growing up being different. Maybe this book will give me some guidance about how to discuss this topic. I know this is only the beginning of many conversations with The Prince about this. To be continued…Photo credit: courtesy of The Consulting Collective, Inc. www.consultingcollective.net .