We have a diagnosis. After OT and PT at age 5, vision therapy at age 6, developmental pediatrics evaluation at 5, formal IQ testing at 6, and six or seven visits to our favorite psychologist, and we have a name. It’s not colic (hey, that worked for the first few months). It’s not simply anxiety. It’s not just hypotonia with sensory integration disorder and convergence disorder. It’s not oppositional defiant disorder or ADHD. And it’s not PDD-NOS (pervasive developmental disorder, not otherwise specified), a useless category that says nothing but, “Yup, your kid is quirky but not in a definable way that leads you to any specific interventions.”
It’s Asperger’s Syndrome, part of the autistic spectrum.
And I’ve known that for years. Since our nine months of twice-weekly visits to occupational and physical therapy at age 5, I’ve known there was a piece to the puzzle missing. The older he became, the more I was certain that AS was the unifying answer, but professionals reassured me that it really didn’t fit. Okay, but the books on parenting kids with AS helped (a bit), and the parenting books for those with neurotypical kids didn’t. And nothing I learned from parenting my first helped with my second.
I’m not blaming any of the fine professionals we’ve seen over the past four or five years. My younger is profoundly gifted and highly verbal. He’s developed a keen if odd sense of humor and can deflect questions he doesn’t understand. These traits have helped him for his inability to take the perspective of another or understand the nonverbals (vocal cues, facial expression, body language) that makes up of 90% of spoken, live communication. It’s just not working so well anymore. Folks expect more reciprocity and understanding of subtlety as you get older, and he is just unable to keep up. He’s exhausted, anxious, and angry.
I’ve spent nine years as his buffer from and interpreter of the world. His brother’s been his social lubricant in addition to back-up buffer and interpreter. We’re exhausted, anxious, and, sometimes, angry. But at least we can recognize those feelings in each other and offer support and a hug.
And now we have a diagnosis. Nothing’s different today. He’s the same child I’ve parented for nine years. He’ll require much more of the same approach I’ve given to parenting him, with plenty of interpreting of the world by family and friends for years to come. So what does it matter? He’s not in school, so a slew of services to negotiate aren’t forthcoming. He’s, for now, unaware of his diagnosis, although we’ve had plenty of conversations about his challenges with transitions, jokes, and facial expression challenges. There’s no definitive treatment to start. So what does it matter?
It matters. Now I know why it’s been so difficult to parent him effectively. Now I know it’s not that I’m a bad mom, a label I’ve given myself two hours into an intractable tantrum, wondering where in the process I went so terribly wrong. I’ve felt I was a “bad mom” during the times I’ve wanted to vanish from a social scene where a meltdown was beginning, feeling the eyes of other parents on me, feeling their disapproval of me and my child. While my head’s known that label wasn’t true, in the dark moments, that’s where my heart sinks. With the diagnosis, I can let that concern go. I didn’t do this to him.
It matters. Since it’s not my fault, I can’t fix it. I can support and love him. I can find assistance teaching him the skills that most of us never give a second thought: the ability to see through the eyes of another, to feel what they feel, and to read a face and body when words don’t tell the whole story. But I can’t fix him, and a firm diagnosis is a chilling reminder that no parenting approach will change the biology of his brain.
Today, and for all days to come, we have a diagnosis. It’s not a label to stick on him or a box to stick him in, but it’s an acceptance of certain facts of life. An official diagnosis will open some doors for both of us, take some (self-imposed) guilt off of me, and offer us a frame for the struggles to come. For that, I’m grateful and hopeful.