I have 5-year-old twins: Quentin, who has autism, and Fiona, who does not. Last spring, Fiona participated in the "Walk for Autism Speaks" at my side. It was then that she started asking about autism, and a whole host of other questions that go along with it. Explaining autism to anyone can be difficult but explaining it in simple terms to a 5-year-old is even harder. Up until that point, there was no need to discuss Quentin's diagnosis with her. Fiona knows her brother has trouble talking, but she does not see anything wrong with any of his other behaviors (sensory seeking behaviors, need for visual stimulation, flapping, screeching, etc.). She knows he goes to a different school than she does but it has been like that for two years and so she does not think much about it. She pretty much just thinks of him as Quentin, and has no judgments. Yet very suddenly, I needed some help in talking about autism with her.
That's when I ordered "My Brother Charlie." It's a picture book about boy-girl twins, and the brother has autism. It's told from the sister's perspective, so I knew it would hit home. When the book first arrived I read it by myself. I broke down in tears halfway through it. I thought, how was I possibly going to be able to read this to my daughter without getting emotional? The narrator says, "Charlie has autism. His brain works in a special way. It's harder for him to make friends. Or show his true feelings. Or stay safe."
Fortunately, when Fiona and I read the book together I managed to keep my composure. We talked about the family in the book, and compared them to our lives. Yes, the boy in the book with autism is not exactly like Quentin. As we began reading, I worried that Fiona would not understand the diagnosis any better. It didn't list any of the key symptoms or offer any help on how to interact with someone with autism.
The book is a mother-daughter collaboration. Holly Robinson Peete and her daughter Ryan Elizabeth Peete wanted to write a book to help families like ours. Part of the reason why explaining autism is difficult (to anyone) is because it can manifest itself differently in anyone with the diagnosis. Symptoms are various and may not always be present, however, a majority of people with autism exhibit issues, including communication, socialization and sensory stimulation.
Fiona does not really understand this. It's hard for most 5-year-olds to see things beyond black and white terminology. For her, I am pretty sure she considers Quentin's autism a problem that makes it hard for him to speak. But a book like this is not really meant to explain the diagnosis. Most children still reading picture books are not going to understand the complexities of autism, anyway. Instead, this book is meant to be more of a comfort to anyone who is in a relationship with a child with autism. The message is about acceptance and love, even though there may be underlying feelings of confusion and anger. It acknowledges that there may be some negative feelings toward someone with autism and reminds us to look beyond those bad parts in order to see the good. This book taught me to stop seeking to define autism for my daughter and simply show her how to love and accept her brother, no matter what.
This is an excerpt of a post that originally appeared in Melissa's blog, the iQ Journals.