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How to pronounce Eli Gottlieb: GOT-leeb
Eli Gottleib discusses how a series of personal tragedies led him to search for a deeper understanding of his autistic sibling and thus inspired his novel Best Boy
Why did you write the book?
Over the course of writing my last novel, both my parents died, my marriage broke up and I became my brother's guardian. That kind of loss tends to focus the faculties pretty drastically, to paraphrase Samuel Johnson, and in this case it led me to concentrate hard on the one family member I had left. I've always been interested in liminal states, and things beyond the edge of obvious speech. Trying to "locate" an autistic perspective in language was one of those.
What's it like growing up the sibling of a child with autism? We tend to focus on parents and on the afflicted children themselves. But what about siblings?
To grow up the sibling of an autistic means to grow up partly invisible. The same is true of being the sibling of any child who's developmentally disabled. The mother and disabled child tend to bond deeply, and everyone else gets relegated to the suburbs of the family, emotionally. Resources and attention flow to the sick child and the pressure causes a high percentage of marriages to explode. As a sibling, it takes work to navigate your own resentment at those years spent living in the shadows.
In your first book you write about every parent's nightmare—relinquishing a son to an institution. Now we revisit that son forty years later. How's he doing?
He's made his peace, and has found a kind of working arrangement with the life and people around him. He misses his mother terribly and loves certain of his staff very much. This, by the way, is pretty close to the truth of my brother.
The book paints a fairly detailed picture of life in a therapeutic community. Is it accurate? What's life like in these places?
The setting and individuals in the book are the fruit of my many years spent visiting my brother in various institutions. They're composites, it's important to add, not portraits of individuals I've known. As for the life in these communities, it's hard to generalize. In the more successful ones, there's a deeply structured set of programs, sympathetic staff and not too much of a turnover in the day providers—those unsung heroes who tend to be paid too little and worked too hard. The best places give a real sense of community and allow people their dignity and a modicum of independence. But even in the best group homes and therapeutic communities, the turnover rate of staff remains appallingly high—to the detriment of the fragile folks who are in their care.
Are you saying that people are underserved on the back end? How big is this population and how could we best serve it?
I'm saying there's a structural crisis in adult autism today—a crisis that comes from the fact that an island nation currently exists of adults in their 50's, 60's and 70's, who are "classically" or severely autistic, institutionalized or living with their now very elderly parents, and about whom next to nothing is known. What are the long term effects of the malady? Does it develop or is it stable over time? And what about meds--are there long-term consequences to the use of these powerful drugs? We simply have no data to answer these questions. The second crisis is coming towards us from the near future, and has to do with the current "epidemic" of childhood autism. Five hundred thousand children with autism will become adults over the next ten years, and our current state funding and infrastructure deals with them as if they have the same maturational/developmental growth curves as neurotypical kids. Funding drops off sharply at age 21 on the presumption that they'll find jobs in the community and become independent. But most/many of them won't and will instead require extended supplemental care. This is a demographic and financial disaster waiting to happen.
Autism has gone from being something that was marginal and poorly understood during your childhood in the 1960's to being so culturally central that it's now a smash Broadway show. Is that a good thing?
Mostly, yes. But see my response above.
How much do you think the voice in this book represents an authentic autistic voice?
Classical severe autism is a black box. It repels language. It's like one of superdense stars that absorbs light. I had to try to plant language in that absence, and to do that I had to recall, as best I could, the sound of my brother's voice in my head, and then shape it for the purposes of narrative. It was a very slow, labor intensive process that saw me let go of a lot of my "literary" reflexes in the search for the broken clarity that lies at the heart of the autistic voice.
The "you" character in both books is less than a hero. Why did you do that? Was it hard to write?
Not to repeat myself, but I think I was trying to point at the resentment that grows in the siblings of children with autism, and which stamps them for life. In reality, I've been very attentive and caring towards my brother. But for literary purposes, I find nasty characters more interesting than wholesome ones—though there are always exceptions (like Todd himself, who I think of as extremely wholesome).
What would you like to say to readers of Best Boy?
I'd like to say that it's a novel and not a tract. I wanted to make a story out of a part of life that is almost entirely unknown and shed some light on that life. But my main purpose was to elevate, engage and move my readers. Let yourself be taken away, please. The policy arguments can come later!
Unless otherwise stated, this interview was conducted at the time the book was first published, and is reproduced with permission of the publisher. This interview may not be reproduced or reprinted without permission in writing from the copyright holder.
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