Not a Happy, But a True, Autism Story

Chicago psychologist David Royko writes about he and his wife Karen’s very, very painful decision to seek a residential placement for their 12-year-old son Ben in an essay entitled The Chronicles of Ben in today’s Chicago Tribune. Much about Ben, and about his story as his father tells it, reminds me of my own 10-year-own boy, Charlie, also “as sweet a creature as you have ever known”; “those who work with Ben tend to adore him,” Royko writes, and it is the same for Charlie: “He’s so smiley,” two of his most recent teachers have said to me.

You can see life with autism as, perhaps, a glass half-full or half-empty: We all love our children and would go to the ends of the earth to help them; parents have been through a bit on behalf of their children, and our autistic children—autistic persons—-go through more than a bit themselves. Royko writes wrenchingly of the scabs on his arm and of his wife’s body becoming a “punching bag” from being hit and bit by Ben, and of the numerous times when his son does not get what ought to go in the toilet in there, but in his pants, the new minivan, the bedroom floor. Too many repeated episodes of times like these, coupled with the reality of Ben growing up physically, are deciding factors in Ben’s parents’ decision to seek a residential placement. Royko describes a climactic IEP meeting in which he and his wife sit incredulous as “one participant said that she believed Ben’s needs were being met in the classroom setting.” The Roykos’ lawyer speaks and then Ben’s classroom teacher leaves and re-enters the meeting to say that “Ben was having a rough moment,” with one aide badly scratched and another “bitten on the leg so hard that, though Ben’s teeth hadn’t penetrated the fabric of her pants, she still had a bloody welt. She’s the one who went to the hospital.” Royko describes his feelings at this “win” of getting the school district to pay for a residential placement for Ben as more than bittersweet:

If this had been a basketball game, I would have been running around jabbing the air with index fingers and hooting loud and long. Yes, we had “won.” But what we’d just won was funding to send our sweet little Benny boy away from home. I felt overwhelming relief and a touch of queasiness. I imagined it to be similar to what a loved one feels when they win a huge settlement because of an accident that resulted in the loss of a husband or a child. It’s not the kind of win that brings a victory party.

Elizabeth Taylor of the Chicago Tribune magazine notes that “The Roykos’ experience……. is a departure from many recent stories that have an almost fuzzy Hallmark sensibility involving cures and salvation. The Royko family survives, but theirs is not a happy story.” Taylor cites the movie Rain Man as an example of a portrayal of an autistic person as “high-functioning” and an “idiosyncratic genius[es]“—-though I would question how “high-functioning” Raymond in the movie is: For all of his savant abilities, he lives in an institution and is unable to use his language to express his needs and wants. Ben, Royko’s son, is now, too, in a residential placement. For this reason, The Chronicles of Ben is a story that hit home to me, as all the behavior problems, the aggression and the backpack that comes home with a smell-rich load, have happened to my husband JIm and me. There was a time a few years ago when, as parents of a child who was regularly and frequently hitting his head at school and at home, who broke windows (accidentally, but he did use his forehead on one), and who bit an aide (elsewhere than on the leg) who had to get a tetanus shot because her skin was broken—when we wondered if we were going to have to start preparing ourselves to think of a residential placement for our lovely boy.

That did not happen; it took a change of residence for us and hiring ABA therapists to work with Charlie at home to help Charlie stop hitting his head. The living arrangements, with my husband’s elderly parents in a house that was frozen in the 1970s, have not always been easy and the ABA program brings a large bill each month. It has been more than worth it for us: Charlie has been transformed into a happy schoolboy. His backpack comes home with only a lunchbox full of empty contains and a notebook. We do have more than a few moments, a few days that are so great that do have “an almost fuzzy Hallmark sensibility”—-like seeing Charlie stand up on the pedals of his bike and ride off ahead of his dad an hour ago. But ours is neither a story of “cures and salvation,” because I do not think autism is something that needs to be cured, or that we need any salvation from—-and the transformation in my own thinking is that you do not need either a child cured from autism or a family saved from its “hell” to have an autism story with a happy ending.

The Chronicles of Ben ends with Royko describing family life now with Ben’s twin brother Jake who gets to have his first-ever “experience of a spontaneous trip with Mom and Dad and friends to get ice cream.” Royko ends by writing:

That Ben is progressing, and seems happy, allows us to truly enjoy our new life. If any good has come from life with autism, it is a deep appreciation for the everyday, a sense of the ordinary feeling extraordinary.

The other day, someone asked if we’d gotten used to this new life yet, and I said, “No, and I hope we never do.”

I know I could never get used to life without Charlie—-it is hard sometimes to imagine life before Charlie was born. Life with autism has led us to give up much—jobs, living in our house with the hardwood floors and the light coming through the windows, our health at times—life has been good, life is good and life will be good because of Charlie.