July 17, 2013
Dear Son, You Have Autism
I have a beautiful, almost-eight-year-old boy. He has big blue eyes, a head of dense curls, a smile that will light up the room.
He also has autism.
We have known “officially” that he has an autism spectrum disorder (ASD) since he was three, when he got his diagnosis from both the Los Angeles Unified School District (LAUSD) and the Frank D. Lanterman Regional Center. He had a third assessment and diagnosis after we moved to British Columbia, from the Sunny Hill Health Centre for Children, a part of the BC Children’s Hospital (we needed it for him to qualify for government support). I have a binder almost four inches thick full of assessments and reports and IEP’s.
But we knew before that. We knew something was amiss at 18 months, when Jack didn’t want to talk. Rather, he stopped talking. He had started speaking at the normal age, and knew “mama,” “daddy,” and a couple of other words, then just stopped. He babbled a lot, but no more words. We thought he had a speech delay, so we called Early Intervention to have him assessed.
What happened next was a whirlwind of inclusion preschools, occupational therapy (OT), speech therapy (ST), behavioural interventions (ABA), feeding therapies, floortime therapies (learning how to play) and more.
He has come so far since then, from a nonverbal child to one who holds court on weighty subjects for what seems like hours. A child who once had such low upper body strength he could barely get up a play structure, and now swings across the bars like an actual monkey.
Our reality today is nothing like what we expected back when Jack was two or three. At the time, we had no idea if he would ever speak on the level of his peers or be able to attend classes with typical children. Now we know that not only can he hold his own in conversation, he’s in a conventional French Immersion classroom and doing well.
The autism is still there, don’t get me wrong. Jack gets stressed easily by random things, lashes out when he’s confused or upset, and he cannot attend school successfully without a full-time special education assistant (SEA).
But it’s nothing we can’t handle. Nothing Jack can’t handle.
I don’t want to shield Jack in any way from his autism, rather, I want him to wear it proudly like a badge. Or shrug it off like any other part of his personality or anatomy. I want him to choose for himself how he defines autism.
How he defines himself as a person with autism.
The last thing I want is for him to change, to hear this thing about himself and try to think differently or do things differently. I think the reason we’ve waited so long in the first place (although we’ve never hid anything from him) is the fear of labeling. I am an adult and know that labels are for soup cans and UPS packages, but he’s a child, and children can be literal and cruel. Even to themselves.
I also never want Jack’s brothers to write him off or make excuses because, “oh, he’s autistic.” Jack is their fearless leader, their most dedicated teacher, and their loving big brother. He has always been this, and he will always remain the same Jack they know and love. I don’t want a label influence them in any way.
I am probably over-thinking this whole thing, but Jack is a very smart kid. He knows things long before we tell him. The things he intuits never cease to amaze me. He’ll probably be fine, his brothers will be fine, and we’ll all move ahead with our already scheduled programming.
There’s just this little fear in the back of my mind, a little voice saying, “he’s going to be afraid, they’re going to think something’s wrong with him.”
I need to give Jack more credit than that. I’ll just be happy when it’s done and we can be completely open, and involve him entirely in the rallies and fundraisers and autism-related things that we do.
My son has autism, and it’s time to tell him. I hope that we have supported and loved him enough that he will take the news with strength and without fear. I hope he attacks this new adventure with all of the gusto and curiosity he has expended on volcanoes and honeybees.
And so I’ll begin,
“Dear Jack, you have autism.”
Image Credit: Wendy Baskin