“Don’t say the ‘A’ word about your brother,” a mom once said to her 7-year-old daughter. I was surprised to hear such a reprimand directed at a girl who was always polite, never crass. Somewhat jokingly, I asked when such colorful language had entered the repertoire. “We decided to tell her, you know, about it.” About what…..? There I was thinking about how behind I was in parenting literature to have missed a page on when to tell your little ones the little four-lettered ones. But then I understood, but not completely.
I do not have a child on the autism spectrum. I do not have children yet. I do not know how the possible grief and denial associated with parenting a child with an autism spectrum disorder feel. I do not know the stress of managing school, therapy, expectations, life, siblings, a mortgage, a spouse, a dog, and a child on the spectrum. I do not know what it feels like to have a word such as the A word describe me, explain me, define me. One could argue, I don’t know much.
Having devoted the last 10 years of my life to working with children, youth, and adults on the spectrum and their families, here is what I believe.
· Telling your child that he or she has Asperger’s Disorder does not elicit a predictable reaction. Nonplussed, relieved, discordant, “whatever,” “you just swore!” Have multiple discussions planned and, remember, you are probably more nervous than your child.
· No two children will understand their diagnosis alike. Some do not recognize their differences, while others are painfully aware. For the former, acknowledging a diagnosis jumpstarts an education process; for the latter, it jumpstarts a sometimes painful process of self-discovery.
· While many call this process “labeling,” I call it recognition. You label something for sale, storage or ready retrieval — none of which I would recommend for a child with Asperger’s Disorder. Recognition is about spot lighting for a purpose. I have seen that purpose be magnificent –- self-discovery and understanding, reduction of depression, an enormous sigh of relief -– when we spotlight strengths, uniqueness, and talents while being honest about weaknesses, challenges, and struggles. When framing this discussion, I advise, “How can you, the parent, add value?”
· Baggage exists with such knowledge. The A word can turn into an excuse, a crutch, something to blame. The A word can be unknowingly “leaked” to others who bully, tease, and take advantage of. The A word can generate a lot of questions with few answers. The A word can be something to hide, avoid or rename.
· The birds and the bees this is not. Don’t expect to have a one-time discussion and drop it for self-research. Expect this topic to be on-going and evolving and for your involvement to be ever changing.
When my mom hears someone use foul language, she often retorts, “Apparently, they aren’t smart enough to think of a better way to say it.” We are, so let’s reserve the A word for those who aren’t.