Autism Vox

What do a former MTV-VJ, a machine aficionado, and a Grinnell professor have in common?

by Kristina Chew, PhD on October 8th, 2007

They have all written books about autism that have been published this year, as have many others, two being Unstrange Minds: Remapping the World of Autism by Roy Richard Grinker and Kiara Brinkman’s novel, Up High in the Trees, which is not explicitly about autism, but which is a finely crafted portrait of one “quirky” child in a family of quirks and needs. I have yet to do justice to Brinkman’s book—-I have had this big project to finish for work, and it is getting towards done—and the books by Jenny McCarthy and John Elder Robison, and their authors, have been much talked about.

When I started blogging here, one of my intentions was to write about “the latest autism books.” While I do write fairly frequently about books, I soon found that there were a great many other things to write about, however they were “connected” to autism, from various theories of what causes to autism to treatments (some rather outlandish) to puzzling references to autism in limericks, not to mention the occasional post about my son Charlie’s latest doings.

There has been a lot about McCarthy’s and Robison’s recently published book but (to my thinking) one reason for writing a book is that it is someting more lasting, more permanent; something I could direct a student to find on a library bookshelf. Something that might become “classic,” that I like to read and read again, and Grinnell College creative writing professor Ralph Savarese’s Reasonable People: A Memoir of Autism and Adoption is one such book.

Of course, Reasonable People is not only written by Savarese, but also by his 15-year-old autistic son, DJ,

“a boy who can’t talk but communicates like few do”

So Des Moines Register reporter Mike Kilen writes of DJ. Kilen’s article is framed by a visit to the Savareses’ house in Grinnell, Iowa. I’ve reviewed Savarese’s book earlier—-in All Brain and No Mind: Trauma, Psychoanalysis and Autism in Reasonable People by Ralph Savarese, Why adopt a severely disabled child, LOWER LEVEL HERE: On parenting a disabled child, and The Black Hole of Autism, Revisited. Kilen refers to Reasonable People as “powerful,” and few readers would not agree. Savarese’s is an unstintingly honest, passionate, loving and (yes) powerful account of how he and his wife, Emily Savarese, came to adopt DJ—a non-verbal boy born to a mother addicted to drugs and abused by another child while in foster care—and came to teach him to communicate, by learning slowly to read and then, with assistance, to type on a keyboard and to write. DJ’s own writings are easily some of the most powerful in Reasonable People. Here he writes about his parents:

“Yes, treated with respect for first time in my life. Yes, lose them and I lose everything.”

Kilen’s article provides a good overview of Reasonable People. He describes DJ coming home from school with his backpack and jumping with his father on the room-size trampoline that Savarese built for him (and that how many of us covet?). At one moment, DJ has a “meltdown” and the reporter quotes Savarese telling him:

“You’ve got to be positive,” [Savarese] tells [DJ] gently. “You can do it. This is what we’ve been working on. You’ve got to deal with nervousness in a positive way.”

It is how I have been learning to help Charlie through an anxious moment. In years before, I used to think that it was necessary to get Charlie calmed down, not crying, over the tantrum as soon as possible. In the past two years I have finally understood that Charlie gets over his anxiety bit by bit, in gradual steps; that the crying may continue, even for several, several minutes, along with snatches of odd phrases and some yelps and a harried look in his eyes. “Of course you’re not feeling so good right now; it’s really hard,” I say now. “It’s okay you’re upset, you’ll be okay.” This sort of validation not only of how he feels but of why he is wound up in crying has been helping, I think, and Charlie often is wailing one moment and starting a grin with an “it’s okay” in the next.

Kilen notes, indeed, his own anxiety at interviewing DJ and Savarese too:

I reached the elegant 1896 home of Ralph Savarese early and circled the block past Grinnell College, wondering why I was anxious about going in.

I’d done thousands of interviews over the years with arrogant doctors and lawyers, media-weary celebrities and politicians, threatening convicts and crack addicts on the street.

Savarese is a creative-writing professor at the college, but the atmosphere would be thick with expectations. He is sensitive to how others speak to his son and how they generalize about his disability.
……..
Savarese [has] railed against injustice to disabled people, against even the professionally recognized categorization of autism on a scale of “low functioning” to “high functioning,” and the notion that the greatest goal is to “cure” autism. He sees it as a gift.

“We give up on all sorts of people,” he said in a National Public Radio interview.

He wrote an essay for the Los Angeles Times urging Americans to adopt the half-million special-needs children instead of traveling overseas to find kids.

He recoiled at the word “normal,” preferring “neurotypical.”

I wondered whether I would use the wrong words.

But perhaps the real anxiety was talking with a young boy who is both astounding and puzzling, a boy who had just come to life over 442 pages, a boy with keen insight and unpredictable meltdowns.

I appreciate Kilen’s noting his honest feelings and all the more so because honesty and feeling are two things that truly characterize Reasonable People, and that make it such a powerful read. Savarese writes about the spectrum of emotions—-joy, hope, anger, confusion, sorrow, rage—-that a parent (and a child) can go through in the course of a day, or a few hours:

When Savarese and his wife are informed that DJ has been terribly beaten while in one foster care home, there is a lot, a lot, of feeling.

…..I excoriated the Department of Children and Families, demanding to know how it could have placed DJ in a home with five other foster children and a foster mother who clearly didn’t want him. Emily had begged the Department to place him elsewhere. “This is how children get killed!” I yelled in my usual dramatic fashion, desperate to undo what had happened with ample outrage. Of course, I knew how badly DCF suffered from a shortage of foster homes, and people like me weren’t exactly vying to become foster parents. But my liberal rhetoric often got our ahead of my actions, bathing the world in legitimate but empty complaint. (p. 51)

……………..

Who could brutalize a three-year-old? What kind of barbarism was this? I’d obviously heard of child abuse, but I’d never seen this sort of injury up close. (p. 52)

Savarese writes too, with constant honesty and also humor, about a kind of rage, that parents of autistic children can feel so hard it really hurts: Why does it have to be so hard?

I don’t know; I don’t know if any of us know. But I do know that there is a time to rage, and a time to be calm, and at a time to be anxious, and a time to just hold on and hope for what you’re not quite sure. And for me, it helps to take those feelings and make something of them—an impetus to work on getting Charlie a really good IEP; a determination to be more patient, try harder, keep teaching; a book on (as Saverese’s book is subtitled) “the meaning of family and the politics of neurological difference” that calls to be read, and then reread, until we get to read a book by DJ Savarese himself.

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POSTED IN: Adoption, Autism Lit, Books, Family