What We Need

     Imaginary play can be slow to develop in autistic children. Like C’s language of echolalia (repeating things he’d heard elsewhere), he seemed, for a long time, only to play in scenarios taken from somewhere else. He would painstakingly recreate a Thomas the Train episode with his toy engines, no small feat in and of itself, truth be told.

     Slowly, however, signs of imagination in his play emerged. While he was and is still rooted in a very concrete world, I see moments of creativity and even downright exaggeration appearing in his thoughts. “There was a fly in my room. Pause. It was THIS big. (Imagine the gesture from the guy telling the fish story inserted here.) I shoo-ded it out of my room. It almost broked the window going outside.”

     I laughed out loud at this one. Laughed because, well, it was funny, and laughed because he was so earnest while telling his tall tale. I could picture him years from now shooting the breeze with the guys and perhaps even getting away with it.

     And that, I say with delight, is THIS BIG.

     I’ve never felt like C’s diagnosis of autism was the end all diagnosis. In my mind, there’s more to the story. I remember when he was a baby, long before the word “autism” came into our lives, I used to sit up, late at night, putting different combinations of words into google. Thinking if I just came up with the right grouping of words I might find out what was going on with him, I’d pour through the latest neurologist’s report looking for keywords I might try. “Low set ears, wide nasal bridge, small feet, sensory issues.” “Failure to thrive, developmental delay, easy skin scarring, low muscle tone.” “Delayed speech, motor planning problems, food allergies, asthma.” As if I could put in the ingredients and out would pop the name of the dish.

     What came out of google were unpronounceable, horrible maladies no one should ever have to know about, let alone experience. Pictures of children who didn’t live past the age of one flooded my screen, and I cried as I read about syndromes and disorders I knew my child didn’t have. Yet the researcher in me wanted, needed answers, so I kept searching. I was never one who didn’t want to know; to me, knowledge is power, and I wanted someone, somewhere to be able to give us answers. 

     Of course no one could.  We have certainly closed in on many issues that are likely the explanation of all the things that have happened to him since his conception, of which autism is only a part. But now the google searches are done, the medical records are stored in a notebook that accompanies him to any doctor appointment but otherwise sits mostly closed, and I have a stack of development and autism books that sits unread on my bedside table. Yet what I know now, and have come to accept, is that we’ll probably never have an answer, because to have an answer, we’d have to have a reason, and I don’t think we’ll ever have that.