Autism and Authenticity: Why the Truth Hurts and Helps (#96)

Charlie and I went to Blockbuster just before dinner and left with the 1960 film Spartacus, which depicts the life of the Roman slave who led a slave revolt in the waning days of the Roman Republic (73-71 B.C.). (Latin grammar day in and day out does go down a bit better with the occasional showing of a film–even classic Kirk Douglas and certainly Gladiator.) While I searched amid the shelves, Charlie was delighted to find a Barney DVD, with the approximate title of Let’s Play School. He walked around with it while I yet again contemplated (and decided against) buying "the Brad Pitt Troy." Charlie walked out the door empty-handed and straight for the black car and "Mommy I want sushi." (Which he got, and not the most expensive pack.)

Blockbuster is a two-minute drive from our house and I’ve only been there maybe five times in the past two years. Charlie was so fixated on Barney and the Teletubbies that to take him in there always meant a dreadful exit, when he’d try to walk out with the empty video and DVD boxes. (We got Netflix and cancelled our subscription when the DVDs sat unopened for months on my desk.) Lately, it does seem that I can take Charlie almost anywhere, and have a peaceful visit and exit: grocery stores, Barnes and Noble, the mall, the library (fast), restaurants other than McDonald’s. If this keeps up, we’ll have to revisit the List of Forbidden Places including a certain Vietnamese restaurant where Charlie cleared a table of dishes, water glasses, and food in April.

We know that, to a large extent, Charlie’s now almost two-month long period of peaceful easy-feelingness is the result of our resuming an intensive ABA home program. We have only "officially" begun therapy sessions in the past few weeks but have been talking about it since July, which is also when our new home consultant observed Charlie at school. From that point on, I began to think not simply about how to "manage" his behavior but how to shift the conversation to education–reading, writing, play other than lining up the DVD cases. I can offer no precise data about this beyond my writing here, but we have seen a slow and sweet evolution in Charlie’s handling of himself. Jim calls it growing up. It is also a kind of relief in Charlie to find himself in the kind of tightly ordered educational program, with the expectations clearly laid out and heavily reinforced, that he first learned so successfully with. Our old friend Tara deserves full credit for gently urging us to set up an intensive home program (on a more limited basis than the 40 hours Charlie used to have).

I wonder too how much this malleable, agreeable, and cheerful boy–who greeted the new consultant with a big smile and a "HI" this afternoon–has shown his true colors thanks to our determination, inspired over the summer by Charlie’s glorious days at the beach, to maintain an optimistic, positive, we-have-high-expectations attitude. Certainly we have always believed in our boy and known that he tries his best, even on the worst days that bruised the three of us. Certainly we have known it was necessary to focus on a self-injurious behavior like head-banging because of the obvious health concerns. And certainly we have struggled with thoughts of this is what it has all come down to, this is always the boy we love and started to research helmets. To find out that your child has autism is to stand on the edge of a precipice that you turn around and walk away from. To see your growing child, despite doing everything, regress, is to straddle chaos.

In addition to being "100% honest" about Charlie and our life here, I have also always tried to be upbeat and write about how life with autism is awful, joyful, and good. I frequently ask myself, how am I portraying Charlie? Am I misrepresenting him, as much as I and other Classicists sigh over films like Spartacus and Gladiator, decrying the lack of "historical authenticity"; of "truth."

Here is the truth about Charlie today. He hit his head once on the carpet at 9am at school. He did his share of talking the rest of the day. He was very happy when Danielle picked him up at his afterschool program; he worked well for an hour and a half with his therapist; he hung out in our backyard with a Capri Sun and a bowl of chips and got mad at me when I asked him too intently about using the bathroom. He wanted to go and run in the front yard and acceded to my request to stay inside. He waited until "daddy home" before going up for "bedtime five ten minute."

Charlie was puzzled when I told him it is Rosh Hashanah tomorrow and there is no school. "School tomorrow. Backpack." He smiled and sang a Wiggles song: "On your holiday, on your holiday, we love to have a very good time." We love to love you, lovely Charlie, and may the good times grow.

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