Max responds to my coughs and sneezes which he hears from all the way downstairs in another room.
I continue to cough and blow my nose due to spring allergies.
Max becomes louder in his well wishes.
I cough and sneeze again. Big mistake.
“Mommy! Gesundheit!!! Say thank you!”
Although I utter, “Thank you” I am too late in my response for his liking. Max runs upstairs to make sure I say “thank you” and offers me tissues.
Max, the ultimate enforcer of politeness, follows the rules he has learned about social rules and interactions to the Nth degree. But the subtleties and nuances of such social interactions are a little harder for my son to comprehend.
You see Max has autism.
There was a time long ago when I knew nothing about autism. In high school I had seen a reference or two in books about children with autism and these children were usually described as mute, trapped within their bodies, or rocking to soothe their inner pain. Sometimes the word “autism” wasn’t even used but instead, “childhood schizophrenia” to describe this disorder which was clearly misunderstood.
Decades ago parents were told that their child diagnosed with autism would probably never speak, would never be independent, and would need to be institutionalized. It is hard to believe but some professionals still say these doom and gloom predictions to parents even now.
When my Max was diagnosed I was told similar stories. One speech therapist handed me a brochure for an autism farm where adults would live and work. My son was three years old. “Never too early to think of the future” she said cheerily. I was told by another professional that Max might never talk and that if he didn’t talk soon, his chances would greatly diminish as time passed. When Max was diagnosed I asked one of the testers what we could hope for Max’s future. She told me that she had heard about one young man with autism who had gone to his prom. I questioned whether going to the prom is the pinnacle of “success” for someone with autism or anyone else for that matter. A teacher who came to our home to instruct Max brought a peg board as one of her teaching tasks. When I asked her why she was giving him a peg board when she hadn’t even assessed his skills, she muttered that he was autistic so we start with a peg board.
So what is a parent to surmise from all this? My son is hopelessly delayed, will never talk, and we need to buy a lot of peg boards. We should plan his future living on a farm and hey, if we are really super lucky, he can aspire to go the prom someday.
Along with the gloom and doom predictions were the claims of miracles and cures. There were books about how a mother cured her son of autism by spending hours with him in the bathroom mimicking her child’s movements. There are books about diets and super supplements which can supposedly change your child’s biology and brain chemistry. There are methods and treatments which purport to eradicate or even defeat autism. For some, autism is a battle to be fought and won. The goal of such a battle is to have a child who is “indistinguishable from his or her neurologically typical peers.” Translation: I want my kid to appear or be as normal as possible. I question whether this is really something to aspire to. After all, who is this “normal” child we hold on a pedestal? Is there room for people who are a little or in some cases, a lot different than others?