Whose autism is it anyways? (#267)

For homework, I asked my Cultural Anthropology class to read more of Anne Fadiman’s The Spirit Catches You and You Fall Down while thinking about this question:

"Given that the book is all about a young Hmong child, Lia Lee, who is unable to speak for herself (literally, by the book’s end), how well do you feel you know Lia?
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Given that this blog is all about my son Charlie, who can talk to tell me he wanted "green apples" and "no walk, I want walk, socks on!", and who has autism, how well do you feel you know Charlie?

One of my California aunts just wrote to me that, from reading the blog, she feels she knows him as well as my cousins’ children whom she has babysat from crib to college. I subtitled Autismland "the autism reality show starring Charlie" and have tried to write concretely, journalistically, and as objectively as possible about what Charlie does for the past several months. Without the mundane details of our life with Charlie, my writing on autism would be invalidated. Without telling you that Charlie has made it to lesson 5 of the Edmark Reading Program and is starting to sight read from the list of Dolch words; that he must have asked for five or six green apples (I lost count); that he paused before climbing the slide to watch a little girl who was running across the grass; that he pulled the shopping cart out of the stall and pushed it through the store, me before him; that he chortled "Daaaadeee home, I want Daddy home, Daddy, Daddy, Daddy come home!" while peering out the second floor window at the street below; that Jim and I ran up the stairs at the smallest footfall to find Chrlrie asking "I want pumpkin" (a plastic pumpkin his old teacher gave him for Halloween).

"We should get him a nightlight," I said to Jim. "Why haven’t I thought of that before?"

I really do not see the world as Charlie does. Allow me to come out and admit to being NT, and hope I may be considered "autism-friendly." Nonetheless–from that incandescent moment at Missouri Baptist Medical Center when I looked over the foot of my hospital bed and saw a big brown-eyed handsome baby–Charlie!–I’ve always felt cryingly close to my boy. Jim sometimes like to say he feels he has a kind of weird-ESP-like link to Charlie in which—however far away he may be in the Bronx and underground on that D train in the subway—he can feel the change in the air when Charlie is having a tough time. Jim and I had come to peace with autism–had established ourselves in the business of acceptance–before we were handed the report with the official diagnosis on July 22, 1999, in Minneapolis (Charlie was just a few months over two years old.) What we were stuck in was our own sorrow, which was soon pushed away as we became emboldened to help, teach, and cheer on Charlie in his ABA program.

It was my mother-in-law who first noted something "different" about Charlie. He was several months old. Jim’s parents had come to visit us in St. Louis and we were sitting in the sunny family room of the house we were renting in University City. "Why is he just sitting there?" Jim’s mom asked. "He does that," I said. "But shouldn’t he be into things, you know, opening drawers, pulling out the pots and pans…..," she asked. I mumbled something, probably defensive. My mother-in-law went back to regarding sitting Charlie. "I wonder what he’s looking at. The wind moving those branches…."

Some nine months later I gave her a quick hug and a watery-eyed "hi…." as she pulled herself out of a car at the Jersey shore. We had driven two days from St. Louis to our favorite vacation spot and Jim’s parents and relatives had driven down for a visit. "Yes, dear, move along……" I swallowed whatever weeping scene might have ensued. I nodded.

Over the years, as Jim and I, having mastered acceptance, moved onto advocacy, my mother-in-law was sometimes alarmed at our often aggressive stance. "He’s solid!" she’d say. "What a good eater." "He’s learning the alphabet and we did the balance beam in gymnastics," I said. "That’s nice, dear. What a big boy, solid!"

When I met Jim, he frequently received thick manila envelopes in the mail, stuffed with clippings from the four newspapers his mother read and collected for him, along with the occasional shirt with tuitty-fruity colors. (Which he always wore at least once.) Soon she was adding clippings from the Wall Street Journal about Classics and asking me for my view on the state of higher education in the USA. And then, clippings about autism.

She always told me that she wished she had been a teacher. "History, social studies," she noted. She went to college in Virginia for a year and had to return because she did not want to major in the sciences, as her father required. She got a job in advertising with a radio station in Manhattan. She got married. She had Jim’s sister, and then she had Jim, who always reminds me that she worked on Queen For a Day. She accepted things as they were and told me, "I want my gravestone to say ‘She tried.’" "Oh come on," I said. "’She tried,’ that’s what it will say," she responded.

Then she had a stroke a few years ago and stopped reading, much less saving us stories. And now the knee-replacement surgery.

I called her this afternoon. She has been struggling and spent the day in her bed at the rehab hospital. "You can do it," I said. "Yes, dear, Charlie’s doing good?" she said, slowly, weakly–not the fast Jersey talker who always ended phone conversations with "Bye now" and a clunk of the receiver while I was still talking.
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Yes, Charlie did good today, I thought as I ran to get my coat to join him on a walk.

All during the walk around the neighborhood (and earlier, as I sat beneath the Pulaski Skyway waiting to cross Routes 1 & 9), I kept remembering how, seven plus years ago, I refused to listen about Charlie having "something"; accepting his autism diagnosis was the first step in a long life of advocacy. And I can never forgot that Charlie’s early signs of autism, while unremarkable to me, had caught my mother-in-law’s eyes and that she had mentioned them to us and, Cassandra-like, not been listened to.

Given that this blog is all about a young autistic child, Charlie, who is unable to speak for herself (presently, but who knows what the future holds?), how well do you feel you know Charlie?

Weller than well? Really well? Sort of?

Well enough to be another Cassandra for autism when the time comes?

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Comments
4 Responses to “Whose autism is it anyways? (#267)”
  1. Lisa says:

    Kristina,

    You speak so eloquently, not *for* Charlie, but on his behalf. Your voice allows Charlie his space so that his own voice emerges clearly.

    Everything I’ve read on this blog has been honest and authentic and you have my utmost respect.

    Do I feel I know Charlie? Certainly I recognize some of my own experience in both him and you. Rather, I feel as if I know you ‘weller than well’–enough to name you friend.

    Best,
    Lisa

  2. I feel like I know some aspects of *you* –your joy in Charlie, your deep connection, your dreams for him.

    As to Charlie’s speech–it seems clear from your writing that he has more going on in his wonderful noggin than he can express with words. I am reminded that my grandfather was pretty aphasic following a stroke. But his family understood him pretty well–well enough that I recall my father having a heated political discussion with him. I also recall that the process of getting “dialed in” to the meaning of Popppie’s speech always took a bit of time for me as a child.

  3. SquareGirl says:

    I feel that because of your writing, your minutiae, your willingness to share every detail of Charlie’s, I know him really well…and for that I am grateful. That doesn’t mean that I still do not have a lot more to learn of and from Charlie as i’m sure that I do and really look forward to doing so. Thank you Kristina for letting us all know Charlie.

  4. gretchen says:

    I don’t know if I can ever thank L, Henry’s caregiver, enough. She was the first to suggest autism, and that suggestion was not greeted well by me. The following day she said “I hope I didn’t upset you..” and I snapped “well, you did.” Now it means so much when I can share stories with her of Henry’s achievements.

    As for how well I know Charlie? I feel sure I would recognize him if I saw him in the grocery store or the pool. I wish that could happen someday!

    And I will say a prayer for your in-laws, for regained strength.

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