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Image of hands, bodies, and instruments around a face: Autism is a complex developmental disability.
 
 
 
 
 
 
 
 

INTERVIEW WITH RALPH J. SAVARESE, PH.D.
author of “Reasonable People: A Memoir of Autism & Adoption”

May 15, 2007


In Reasonable People: A Memoir of Autism and Adoption (Other Press, 2007), DJ Savarese’s adoptive father, Ralph James Savarese, tells the remarkable story of the boy who was, as he writes, “discarded like a piece of trash.” Judged profoundly retarded, abandoned by his parents and abused in foster care, DJ was not toilet trained and could not communicate when Ralph and his wife, Emily, found him at the age of six. Today, at 14, he expresses himself through a computer, has been successfully mainstreamed in public school, and appears with his father and mother at autism conferences nationwide. Savarese, a literature professor at Grinnell College in Iowa, is now a committed activist on behalf of people with autism. He is also a proponent of Facilitated Communication, a technique that has profoundly changed his son’s life as a tool in promoting literacy and eventually communication.
-Scott Manning

Image of Ralph J. Savarese, PhD



NLMFF: What inspired you to write this book? What did you hope to accomplish through writing this book?

Savarese:
At first, I intended the book as a kind of advocacy on behalf of those who could not represent themselves: namely poor, disabled kids in foster care. But as my adopted son became literate, my plan for the book changed. I knew that I wanted to include his words in the book and even end the project with a chapter written by him. In this way, the book would embody the movement from advocacy to self-advocacy, representation to self-representation. Ultimately, my hope is that people will re-think the classical Autist—whom Oliver Sacks once described, very disparagingly, as “the creature for whom very little future lies in store.” My son, who once carried a label of profound mental retardation, is now a fully included, honor roll student at our local middle school; he most certainly does have a future, and others with classical autism do as well.

NLMFF: What type of impact do you hope this book will have on your readers and on the autism community?

Savarese: Well, as I said, I want to change the way we think about classical autism. I want us to be more inclusive. I want us to practice what Anne Donnellan calls “the least dangerous assumption” when we try to gauge the potential of someone with classical autism. I want to imagine a world that is a little more tolerant of difference, neurological and otherwise.

NLMFF: How does your book differ from other recently published books written by parents on the subject of raising a child with autism?

Savarese: Besides, the obvious adoption angle—my wife and I got DJ at the age of six—the book differs from others in its attention to that part of the spectrum where hopelessness is said to reside. Who could have been more hopeless than DJ, a badly abused, non-speaking six-year-old with classical autism, a boy in diapers who spent almost all of his time perseverating? And yet, look at what DJ has achieved in the eight years he has been with us. Many of the books coming out now are about so-called “high-functioning” Autists; those about so-called “low-functioning” Autists seem, for the most part, to have given up on possibility or to have bought in to a strictly behaviorist approach to this condition. Disputing the dominant theory of mind hypothesis, my book argues for teaching literacy and taming the sensory barrage that makes reciprocal sociality (and learning) difficult—difficult but not impossible. My book also differs in its attention to the politics of neurological difference. It refuses to pathologize this difference, for fear of the impact such a practice has on those with autism. As I write in the book, what do you say to a ten-year-old who so understands the world’s intolerance of difference that he starts typing on his talking computer at night, “Freak is ready for bed”? I believe the cure mindset, which has taken the autism community by storm, is potentially very deleterious. One other thing about the book: it contains much of what DJ’s typed—from his first words at the age of nine to his last words at the age of twelve. You actually get to see him fall into literacy. This detailed archive is very rare.

NLMFF: In the book you suggest that most Americans might themselves be labeled “autistic”. Can you explain your reasoning behind this statement?

Savarese: My book is about social responsibility of all kinds: attending to the world beyond our very noses, a world often so desperately in need. Playing off of a common definition of autism, which speaks of a lack of “knowledge derived from intersubjective reciprocity” and an “inability to link one’s situational center to a social circumference,” I propose that the average American might be thought of as autistic, a word that literally means “self-referring.” How aware are we of those who could use a hand, how committed are we to the ideal of communal fairness? There are some forty million people in this country in poverty, for instance, some half a million kids in foster care. How might we be less focused on our own personal welfare and begin to rectify injustice? Of course, I don’t really accept the above definition of autism; I simply turn it back on narrowly self-interested neuro-typicals.

NLMFF: You criticize the American Psychiatric Association’s current definition of autism and the scientific community’s current view of autism and argue for a paradigm shift towards a new view. Could you speak a bit about this new view for which you are advocating, and what might be necessary for this new view to become widely accepted?

Savarese: As I’ve already alluded to, I don’t believe in the dominant theory of mind hypothesis or its updated “mindblind” sibling; there are simply too many exceptions to this general rule. New research by Laurent Mottron and Morton Gernsbacher has shown that we’ve been using the wrong tests to measure both intelligence and awareness of self and others in people with autism. Moreover, there are plenty of first-hand accounts (Donna Williams, Tito Mukhoppadhay, Sue Rubin, Alberto Frugone, to name just a few) that provide a very different explanation for the problems customarily associated with autism. These problems have to do with body awareness and sensory processing, not with some innate incapacity to perceive the social world. How many theory-of-mind anomalies must emerge before scientists are willing to reconsider what Karen Zelan has called their “prized conjectures”? Perhaps if all children with autism were provided, as early as possible, with innovative occupational therapy and intensive language instruction, along with opportunities for inclusion, there would be such a tidal wave of anomalies that TOM simply couldn’t survive, even in the citadel of the most stubborn scientist.

It must also be said that autism is radically heterogeneous; it probably isn’t even one discrete disorder. As such, we must be very careful not to generalize. My generalization, if it is a generalization, insists on discovering what each child’s true potential is by “presuming competence,” in Doug Biklen’s phrase. In other words, it holds out for possibility across the board. It doesn’t impose some innate impossibility from the outset. Nor does it extrapolate from an inability to speak and a penchant for odd, perseverative behavior a necessary incompetence. Instead, it listens very carefully to those Autists who have been deemed anomalies, and it imagines that there may be many more out there waiting to be discovered. But to discover them, we must work tirelessly with Autists to develop the skill sets necessary for demonstrating competence.

NLMFF: At his current school, DJ is placed in inclusive classroom settings. What has the impact been on his peers and teachers, and have you seen changes in this over time?

Savarese: I’d use the active voice, not the passive, when speaking about DJ’s placement. From the moment we got him at the age of six, we placed him in an inclusive setting, negotiating the IEP tribunal to make this happen. As DJ became literate, he himself insisted on an inclusive placement. Yes, the IEP team as a whole must decide on an appropriate educational setting, but the three of us have steered that team toward the mainland of inclusion.

Inclusion has been good for everyone. In addition to actual statistical evidence showing improved test scores in inclusive classrooms, there is plenty of anecdotal evidence about other benefits as well. Once the parents of kids in DJ’s various classrooms got used to the idea of inclusion, they asked to have their children placed in his class the following year. They commented on how much more relaxed their children had become when taking tests, how much more willing to ask for help, how much more accepting of differences of all kinds. If, as a society, we could get over the notion of competitive well being, where it’s either my welfare or yours, we might see how to make everyone better off. Inclusion doesn’t take away from a neuro-typical kid’s education. We’ve proven this each and every year of DJ’s schooling.

NLMFF: As he confronted his past experiences of being abused, DJ’s comments and behavior were sometimes violent. Were there times when you were genuinely concerned for DJ’s safety and for the safety of those around DJ? If so, what precautions did you take in response to DJ’s comments and behaviors to ensure that he and those around him would not be harmed, especially in the classroom setting?

Savarese: On the really bad days, DJ simply stayed home from school. We could tell when the flashbacks were consuming him, and we elected not to risk a major incident. During this period of PTSD, Emily often hung out in the cafeteria or outside his classroom, ready to intervene if DJ’s stress level increased. Sometimes, she served as his primary aide. On the one hand, we didn’t want DJ to become even more agoraphobic, fearing as he did everything outside the home; on the other, we didn’t want DJ to hit school personnel. So, we tried to have him in school and at the same time worked to manage his anxiety. But sometimes, he did hit school personnel. We used our positive behavioral support team to strategize. We wanted DJ to be responsible for his behavior, but at the same time we wanted to cut him some slack for the obvious trauma he had endured—horrible, unspeakable stuff. We worked hard as a team to strike a reasonable balance. And we worked hard to get DJ to recognize when his stress level was beginning to rise. We taught him to sign “break,” and when he did, we left the classroom, returning only after he was more relaxed. School personnel took a course on how to manage aggressive outbursts—this helped, but really the key thing was a flexible principal and teachers who allowed us to be stationed at the school. Everyone worked together to get DJ through this immensely difficult period.

NLMFF: Before DJ began to use facilitated communication, what pre-literacy and literacy training skills did you and others work with him on to prepare him for communicating in words and to develop the motor skills necessary to point reliably? What made you and Emily believe in DJ’s potential to understand, read and express himself in language?

Savarese: Let me start with the last part of your question first. Lorna Wing couldn’t be more incorrect in the introduction to Tito Mukhopadhyay’s The Mind Tree when she claims, “Children who do not exhibit any signs of good cognitive ability are very unlikely indeed to develop skills through any method of teaching, including facilitated communication.” As my wife once said, “What exactly is Wing trying to accomplish with this statement and what good does it do anyone to listen?” Does an infant exhibit the skill, say, to write a poem? It is only our faith that she might one day be capable of doing so, our faith and our effort, hour after hour after hour, that make it happen. Try leaving a healthy infant alone and see how well she develops. So, if you believe in potential, you don’t need to see evidence of it to begin working diligently with someone.

With DJ, we began—appropriately—at the beginning. My wife, Emily, an inclusion expert, knew that in order to teach DJ how to read we would have to painstakingly expose him to different modes of abstraction: photographs, picture symbols, sign language, and ultimately words. Little did we know that once he’d achieved this milestone he’d be able to go back and attach the graphic signs he was seeing to the previously incomprehensible sounds he was hearing, the world at last making sense to him. Experts call this problem an auditory processing disorder, and it plagues a fair number of classical Autists. That it could be corrected through literacy came as a big surprise.

To be sure, teaching DJ abstraction was an incredibly laborious process, but when he got it, he got it, racing forward like a spaceship at warp speed. At first, he didn’t understand what even a photograph was. It took months of modeling the concept of representation, dangling a picture of Doritos in front of him, before he trusted those filmy, flat things—that they would garner him what he wanted. Slowly but surely, we increased the level of abstraction or remove until we had him comfortable with words. For a period, every object in our house had a photograph, a computer-generated picture symbol, a sign diagram, and a word attached to it.

NLMFF: How has facilitated communication changed DJ’s life?

Savarese: DJ’s chapter answers that question better than I ever could. To see a boy who was, yes, thrown away reflecting on his life, dreaming about the future, aspiring to be a writer—well, that says it all. So much for the label “severe mental retardation” that had been imposed on him! Without facilitated communication, we would never have seen just how rich, complex, compassionate and funny is our son’s interior life. Watching DJ email his friends from Florida, where we used to live, or hanging out with his friends in Iowa is the best reward for all of our hard work.

NLMFF: Is facilitator influence a factor that you, others and DJ have observed, and if so, how have you worked to minimize this?

Savarese: DJ has many facilitators—some 15 total—and his writing style, which is very idiosyncratic, remains the same from facilitator to facilitator. He’s also successfully passed a number of message passing protocols. More recently, with him doing advanced work in math and science, work that his aide doesn’t understand, the issue of facilitator influence has been completely mute. When I facilitate, I try to keep my mind as blank as possible so as not to influence him; sometimes I repeat a word to myself over and over in order to keep occupied. DJ has such a strong voice now that he won’t let you influence him; he’ll tell you if you’re doing so.

NLMFF: Please explain how DJ’s experiences present a twist on the conventional facilitated communication narrative of discovered ability and offer justification for its use.

Savarese: As I noted in my response to a previous question, my wife and I focused on building literacy with DJ: a long, slow process that culminated in the use of facilitated communication. Actually, that’s not quite right. Almost from the beginning, we practiced a version of facilitated communication as a form of literacy instruction without calling it such because we knew that we were moving DJ’s hand during the typing procedure. Only after DJ had demonstrated his competence some time later by pointing independently at answers on a blackboard did we call what we were doing FC. This story of facilitated communication differs significantly from one in which the person with autism, already secretly literate, waits for a method to express himself.

Here’s what I write in the book: “The presumption of literacy skills in nonspeaking Autists may have been what got the FC movement into trouble in the 1990s. Though no doubt some Autists teach themselves how to read, most need innovative instruction. The presumption of potential competence is crucial, but I would distinguish that from the presumption of ready-made ability. While teaching DJ how to read over the course of several years, my wife Emily and I used hand-over-hand typing as but another means of accustoming him to print. The keyboard, we thought, would stabilize and standardize the letters, and the act of pointing at and typing the solutions to fill-in-the-blanks and then placing them in the appropriate spaces on the worksheets would drill the desired skill set in a meaningful way. At the beginning, we knew that DJ was neither coming up with the answers nor typing them on his own, but gradually, after much practice, he sprang to literate life, pointing correctly on his own and moving his facilitators’ hands. The moral of this literacy tale: exceptional measures for exceptional children.”

NLMFF: Since being adopted by Emily and yourself, DJ has made tremendous strides in many areas of his development. Can you share some of the highlights and significant milestones of DJ’s earlier years with you and Emily? Which types of professionals or interventions do you feel were instrumental in aiding DJ’s development? What obstacles would you say DJ still faces in his daily life?

Savarese: He’s made so many strides. I remember being ecstatic when he learned to walk in line in kindergarten or sit for fifteen minutes during story time. I remember when he learned his first American sign: the sign for “more.” I remember when he learned to swim, learned to greet people, learned to put on his clothes, learned to brush his teeth, learned to jump on a trampoline. I especially remember his first expressive statement with facilitated communication. In response to an open-ended question about what Jack (of “Jack and the Beanstalk” fame) was thinking now that he and his mother had vanquished the giant, DJ typed, “Where a dad?” Quite a relevant question from a boy who’d lost his birth family and gained an adoptive one.

In the book I talk about how important occupational therapy was. Here’s what I wrote: “In addition to the unofficial therapy of swimming and skating and wrestling and tickling, we signed DJ up for occupational therapy with a dynamic and innovative therapist named Angie. If I had to point to one person who had a significant impact on his life—who literally made DJ’s future possible by helping him to organize his relationship to the world of objects and people—it would be Angie. She understood the connection between movement, cognition, and emotion, and her infectious enthusiasm was like a crane at a construction site: it made significant building possible. She’d put DJ on a swing in her therapy suite and get him to throw a ball through a hoop while moving behind him and calling out his name. When he’d turn, she’d yell, with a smile as long as any suspension bridge in the world, ‘You did it! You did it!’"

NLMFF: Could you discuss the meaning behind the title of the book, “Reasonable People?”

Savarese: I hope the title has many resonances, not least of which is an implicit rejoinder to the question we’re frequently asked: “Why would someone adopt a badly abused, non-speaking six-year-old with autism from foster care?” (When the people asking this question find out that my wife and I could have had our “own” children, they invariably appear even more flabbergasted.) The question suggests that it was unreasonable—imprudent, unwise, excessive, even crazy—to take on such a “burden.” My book makes an argument for a more reasonable society; by that I mean more responsive to those in need, unwilling to accept glaring inequality and injustice, less focused on personal comfort or inane entertainment. I’m sounding preachy, I’m know. But I’m passionate about making a difference. So, I understand the title to be saying that reasonable people don’t just step over a homeless man on the sidewalk. And reasonable people don’t look for ways to exclude the disabled by refusing this accommodation or that, claiming it’s too expensive or difficult. Reasonable people might actually adopt a badly abused, non-speaking six-year-old with autism. They might adopt this child and face challenges more daunting than anything they’ve ever faced, but also find joy and love—in short: a life richer and more meaningful than they ever imagined.

I also want the title to evoke the debates about “low-functioning” autism in general and FC in particular. The concept of reason is often invoked by scientists to combat the misplaced hopes of parents and educators. But the scientists have been consistently wrong about autism. Just think of the retardation rate in classical autism, for example. It keeps coming down. But what about those Autists whose life trajectories were dramatically diminished by the pronouncements of the scientific community? We need a more reasonable--which is to say humane--view of this condition, one that accommodates endless variation and possibility. Scientists have to proceed more cautiously, even more humbly. Yes—critics of FC, are you listening?—the original studies of facilitated communication were universally devastating, but there have been new studies showing FC’s validity with at least some non-speaking Autists. And now there exist any number of former FC users who are typing independently or semi-independently, having taken years to accomplish this feat. But still the old narrative reigns: FC is a hoax. Why aren’t scientists interested in the much more complicated and interesting conundrum of FC’s mixed success? Why do they so relish the simpler story?

NLMFF: You advocate for acceptance of autism and assert that you are not interested in a cure for autism. Why do you believe that the autism community needs to get out of the cure mindset? If you have discussed this with DJ, does he agree with your perspective?

Savarese: DJ once wrote, “Autism sucks, dad, but I see things you don’t see.” He was talking about how closely he observes the natural world—watching the way the light falls, for example. Is it possible to acknowledge the hardships of autism but also to celebrate what this different way of being makes possible, the gifts it brings? If autism isn’t the calamity many scientists believe it is, robbing the Autist of his very personhood, then why push so hard to cure it? My son perseverates like crazy, but in and through the perseveration he says exquisitely insightful things. He expresses great affection for his friends and family. He’s utterly, if differently, human. No less an autistic luminary than Temple Grandin, when asked if she wished to be cured, remarked, “No, because I wouldn’t be me.” I don’t know exactly what DJ would say; I’ve never asked him this question, as I don’t want him to think that I long for a cure. I love him exactly as he is, and I have come to believe that this attitude is absolutely essential for fostering growth in an autistic child. You want the child to feel good about him- or herself.

Let me also say that the money raised for a cure could be spent on improving the lives of Autists: providing better living and employment options, for example. Sometimes, the highly pitched rhetoric of the cure mindset reminds me of the eugenics movement, which strove to eradicate physiological distinctions it believed to be aberrant and pernicious. Why not make room for difference? I ask.

NLMFF: What important piece of advice can you give to other parents of children with autism who may find themselves in a similar situation as you and Emily?

Savarese: Here’s what DJ wrote to a young girl with autism whose aunt asked him to sign her book: “Treat yourself dearly. Plot to get free.” By “free” DJ means no longer enslaved by neuro-typical prejudice and the bonds of low expectations. DJ tells parents to respect their kids, to believe they can succeed. Emily and I would tell parents that with lots of effort inclusion can work. It takes a community—parents, teachers, counselors, principals, aides, students—to make it work, but it can work. And when it does, everybody feels good.

NLMFF: As a parent, what are your hopes for DJ for the future?

Savarese: At the conclusion of his chapter, DJ writes a letter to the teachers at the center school he attended in Florida before we adopted him. In addition to informing the teachers of his current honor roll status, he reports that he aspires to be a writer, and why not? At age 14 he’s more talented than 95% of the students taking my introductory poetry writing courses at Grinnell College. He’s that good, and he’s only been literate, let alone writing poems, for a few years. With respect to the future generally, our philosophy has been to keep an open mind. Who knows what’s possible? After all, look how far he’s come. DJ asked me recently if he’ll get married, and then if he’ll have sex, and then, finally, if he’ll have kids? I told him all of these things are possible; again, why not? With the right person and continued maturity, the world can be his. I’m tired of pre-set limitations; I’d rather be imaginative when confronting obvious challenges.

NLMFF: What do you anticipate will be the greatest challenges for DJ as he goes through adolescence and adulthood? How will you and Emily prepare him for these challenges?

Savarese: I think independence will certainly present a significant challenge, but we can aim for a high degree of independence; it doesn’t have to be complete. And, anyway, who of us is completely independent? I also think anxiety will continue to present a challenge: managing the ups and downs, learning how to abort a violent outburst, developing coping skills. Again, the key is keeping an open mind about what is possible, the growth that will naturally ensue. I’m absolutely confident that DJ will have a meaningful job, hobbies, friends. He will simply have to work harder than the rest of us to make these things happen. But I haven’t mentioned the challenge of prejudice and discrimination, other people’s close-mindedness. DJ will have to learn to negotiate a world that conspires to pathologize and exclude him. This may be the most significant challenge of all.

NLMFF: What impact is the book having on DJ’s life?

Savarese: It’s a very personal book, and DJ has expressed some anxiety about going public with his life story. But he wants to help autistic kids and foster kids and those who’ve suffered abuse. As he puts it in his chapter, “I dream of being a political freedom fighter.” We gave a reading together recently at Grinnell College to a packed house; the crowd gave him a standing ovation after he shared his poems and thoughts on disability. (About Justin Dart, one of the authors of the ADA, he typed, “You have heard the words of Justin Dart. Our lives deserve to be meaningful.”) The book has made him something of a minor celebrity in our community. It’s given him a chance to shine, to show his native gifts. How many 14-year olds are published authors? How many appear on radio and TV? How many give speeches at national conferences? These activities have enabled him to feel proud of himself.

NLMFF: What is your next writing project? Do you anticipate writing a follow-up to this book in the future, perhaps with DJ as co-author?

Savarese: I don’t think I’ll write another book about DJ; what I like about Reasonable People is that it ends with DJ taking possession of the narrative. It’s his life and his story. He can represent himself. I’d love to write a book with him or maybe help him write his own book. I’ve recently started, on my own, a project that investigates the language use of people who type to communicate. I’m fascinated by how poetic they are, almost spontaneously so. I call this language the “neuro-literary.” I’m bringing my skills as a literature professor to the table of cognitive science and disability rights to see what such an investigation might yield. I’m also writing a novel and a long essay on cognitive disability in Herman Melville’s novel Billy Budd.

NLMFF:Thank you very much for your thoughtful and honest reflections, and for sharing your family’s extraordinary and inspiring story with all of us.



 
 
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