By Amy Groshell
April rolls around like a lion each year for us. The low pressure systems bring explosive weather changes that are only predicted by our daughter’s agitation and explosive behavior. Most people aren’t aware (even in the autism community) that three times more children, teens and adults with autism celebrate their birthdays in the spring. My two girls (both with significant development delays), are no exception.
When I write about my experience with autism, I am referring to Gentry, my bright, bold and beautiful daughter who will turn 18 this month. Yes, children with autism (even those like her with multitudes of early intervention) turn into adults. Recently, my husband and I spent our morning at the courthouse gaining legal guardianship of her. Basically, she will be considered a minor the rest of her life. The beauty of this is that Gentry’s autism is so severe that she won’t even have a clue that we ever did this. She is so “in the moment” that she is driven only by who she’s with, what she is doing, and what she wants to do next. There is a sweetness to this, although, I must admit, that spending time with her (we call it “Gentry time”) is like being Pac Man gobbling up the minutes of the day. My husband affectionately calls it the autism marathon. There is a beauty in being with Gentry. She forces you to be in the moment. You must drop everything on your list – mundane chores included – and be present with her.
When you choose to engage your attention with a person with autism, often doing what they care about, you are helping their autism quiet down. Their bodies are constantly being bombarded with sensory input signals that often they have no control over. Many of the unusual behaviors of autism are merely an attempt to block these signals out. In essence, the behavior is a coping mechanism to help the person with autism survive. By engaging in a positive activity – like swimming or throwing a ball – you are giving the person with autism a break from their hyperactive sensory system. The person with autism is also giving you the gift of living in the moment. After all, aren’t you sick of your list?
This month is autism awareness month. Instead of giving pity to the person with autism, engage with them in a meaningful activity. Just observe them or ask their caregiver for ideas. Connecting with a person with autism is a true gift. It gives them a break from their overactive sensory system and gives them a sense of belonging. I can’t think of a better way to celebrate autism awareness!
Amy Groshell, and her first husband, Steele Gudal, founded LSC in 2002. Steele Gudal died in 2006. Amy and her family now reside in Florida.