Bring it on!: Coming Out About Autism (2) (#110)

“Invective!” Jim exclaimed when I showed him Kev of Left Brain/Right Brain‘s post on why he has decided not to write about his daughter Megan. And then, in the spirit of a favorite movie, Jim added, “Bring it on!”

Just before and for a long while after Charlie was diagnosed with autism on the 22nd of July, 1999, and as we were sifting through what seemed an infinite amount of treatment options for autism, we kept returning to those that talked about “recovery,” about children who had become “indistinguishable from their peers” and had even “lost” their autism diagnosis. I first and then Jim read Catherine Maurice’s Let Me Hear Your Voice practically overnight. I read about the gluten-free casein-free diet and put Charlie on it that evening. We read about the DAN Protocol and Bernard Rimland’s Autism Research Institute, gave our pediatrician the protocol, did testing and testing and treatments.

If “recovery” means “indistinguishability” and “mainstream education” (i.e., no special education), Charlie has not recovered. In fact, Charlie’s case would suggest that all of these intervention efforts amount to nought. He is in a self-contained special education autism classroom. We recently started a fairly intensive home program. He takes Risperdal and Zoloft. His speech is minimal; his behaviors can be aggressive and self-injurious; people stare at him (and us being with him) even before they note his lack of speech. He swims like a fish, which is to say he attracted some curious interest on the beach last summer, while he turned headstands into the oncoming waves and bodysurfed with his eyes so bright, face soaked, joy in every molecule.
We know that Charlie has “recovered” to the extent that he can, given his neurological wiring, given his genetic make-up. I really have no idea how much he can do, and I like this uncertainty, and warmly reflected on it as he rode off on his new bike (24-inch wheels, hand brakes only, gears) with Jim on a sunny morning. Thus, the theme of the past three or four years has been a growing comfort level with being as “out” about autism in as many public settings as possible.

And this has meant a change in our original thought of Charlie always acting “appropriately” and becoming “indistinguishable.” Charlie’s “difference” and disability are apparent not only from his more dramatic gestures–loud cry-screaming and aggressive moments on a walk in lower Manhattan–but also from so many things, little and larger, that are Simply Charlie: His short sentences and repetitive speech. His strangely dogged pace-running. The whoops or eeee’s or whatever noises he makes when he’s excited and the powerful stomp-drumming of his feet. Once Jim was in a grocery store with Charlie and heard a woman saying of our boy “he’s nuts”–it happened that Jim was wearing a “My Child Has Autism” t-shirt and he could not help saying, “excuse me, but do you see what my shirt says?”

And so we are, or try to be, as open and out about autism as we can. At the NAAR walk today, we worked our way up swiftly from the back through the crowd, mindful of Charlie’s liking for staying in motion. After licking “yallow muss-tard” off a hot dog, he called out “swlide!” and ran to the playground. He waited so nicely with some other children to have his turn in an inflated bouncy “thing” and–with the noise of the motor, voices yelling and talking and squealing, the unreal atmosphere inside an inflated plastic space–would not come up (Jim climbed in). He cried for about nine seconds that walked with us somberly. A friend was having a party after the walk and Charlie sat calmly, drinking a lemon-lime soda and sampling the sauce for the Buffalo wings. After Chinese take-out with his grandparents, he got a ride (with Jim driving) in their “white car,” which is clearly Charlie’s favorite vehicle (after his bike). “Ocean, bue boogie board! Oh-shunn.” Said Charlie before departing, barefoot, to cross the back lawn to the shed where we keep the boogie boards and bikes and Jim’s push-lawnmower. “We’ll go tomorrow, pal,” Jim assured him. “Daddy hat on! Daddy owange hat!” said Charlie, snatching up a baseball cap and plunking it on Jim’s head.

We are always glad for “autism awareness” events like the many walks that NAAR sponsors. I do wish that there could be more actual talk about autism at the walks, and even more encouragement that autistic persons be present, and that a fast tantrum would be understood for what it is, could be expected, could not be ignored but met with kindly comprehension. Yes, we need more “autism awareness” but, even more, we need action to get justice for our kids, and we need to teach the public to be comfortable with and to acknowledge autism in its midst. We need to make our world a safe and comprehending place for autism that goes beyond “acceptance” to embracing what kids like Charlie can teach us.

It is Poppy Doyle, father of Edie (played by Eva Marie Saint), who says something like “bring em on” at the movie‘s end, after noting how the union boss Johnny Friendly (played by Lee Cobb), “all my life you’ve ordered me around.” Being “out” and honest about not just autism, but life with Charlie makes Jim, Charlie, and me open targets of anyone in the blogosphere’s, in the Internet’s, invective. My decision to start writing here was only made after long discussion with Jim, and longer hours of thinking spent with my guy Charlie. We believe that Charlie, and so many children and persons diagnosed with autism, have a story that desperately needs telling. We hope that my words here can be a slight beginning, for a good life for our lovely children.

And we are ready and willing to hear what you think about the story of my son Charlie, my son who has autism.


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