July 13, 2009
The ‘A’ Word
By Jeanne Holverstott, M.S.
Question: How do you tell a child that he or she has been diagnosed with Asperger’s Syndrome? Is this something that a 9-year-old needs to know? My feeling is to protect my son until it’s absolutely necessary – perhaps when his status becomes more of an issue. Is that wrong?
Answer: To begin with, let me share a story I will never forget.
“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.
· I suggest your check out Freaks and Geeks and Asperger’s Disorder by Luke Jackson, a 13-year-old with AS, and Dinah Murray’s Coming Out Asperger’s for some wit and wisdom on the subject.
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.
