Autism

Siblings and Autism: Interview with Debra Cumberland

Siblings with Autism is a collection of 16 personal essays that revolve around the experience of having a sibling with autism. I read it this summer and was deeply moved by the stories. If you know anyone who has an autistic sibling this book would make a great addition to their home library: it is highly readable and may help them with their relationships and in understanding their own feelings. They’ll certainly feel less alone.

From the publisher: What is it like to grow up with a sibling on the autism spectrum? What kind of relationship do such siblings have? How does that relationship change as the siblings get older?

In this moving collection of beautifully-written personal accounts, siblings from a variety of backgrounds, and in different circumstances, share their experiences of growing up with a brother or sister with autism. Despite their many differences, their stories show that certain things are common to the “sibling experience”: the emotional terrain of looking on or being overlooked; the confusion of accommodating resentment, love, and helplessness; and above all the yearning to connect across neurological difference.

Siblings and Autism is a thought-provoking book that will appeal to anyone with a personal or professional interest in autism, including parents of siblings of children on the spectrum, teachers, counselors, and psychologists.

By way of disclaimer let me say that Debra Cumberland is a friend of mine and the review copy that I read is one that she gave me. We met in graduate school at the University of Nebraska, Lincoln back in the mid-1990s. Deb is now an English professor at Winona State University in Minnesota. In addition to Siblings and Autism, Deb is also the editor of Willa Cather’s The Song of the Lark (Rodopi, 2010).

Please tell us a little bit about yourself and how you came to this project.
I’m an English professor at Winona State University where I teach creative writing and Victorian literature.

As a young girl, growing up in Storm Lake, Iowa, I was struck by how isolated my family felt with respect to my brother.  We seemed to be the only family in the world who had a child with autism. The books on my parents’ shelves, however, seemed to belie this fact—we had the Noah books, For the Love of Ann, and Barry Kaufman’s SonRise, as well as other, more clinical, texts.  Once we even watched a 60 Minutes episode on autism, so I vaguely realized that there must be other people out there who had children who were like my brother, and that I could not be the only girl who had a sibling with autism. But it certainly felt like it, living in a small town in the1970s. Sometimes people said, when I mentioned that I had a brother who was autistic, “Oh, what does he paint?” That would not be the first time that I encountered such confusion over what the “autism” classification meant.

How to classify my brother also led to problems in the classroom, where, once again, he did not fit in. At home, listening to my parents, I sensed what a struggle it was to keep my brother in a regular public school classroom. We went to family therapy sessions in Cherokee, which I hated, for I could sense, even at a young age, that the psychiatrists there blamed my brother’s autism on my mother. I, however, knew how much she loved him, knew that they were wrong, and could appreciate, everyday, the sacrifices and struggles my parents made to keep the family humming along.

I had felt prior to meeting this friend that no one else had ever had this experience.

It wasn’t until I went to a summer writing program as a high school student at Carleton College that I made a dear friend who also had a brother with autism and recognized what a dramatic difference it made to have someone to talk with, to understand the unique dynamic that a sibling relationship with a brother or sister with autism—or any other neurological or mental challenge—faced. I had felt prior to meeting this friend that no one else had ever had this experience. Now, so many decades later, I’ve become increasingly struck by how hard it would be today NOT to be aware of autism. Just driving down the streets of the town I live in I regularly see bill boards proclaiming how often a child is born with autism—now 1 in 88, according to a recent study by the Centers for Disease Control—or notice advertisements on the cable access channel or in the paper for autism spectrum disorder groups. Now, everyone I meet seems to have heard of it, although the information they may have hold of may not be accurate. There has been an explosion of parent memoirs, the most famous right now being Jenny McCarthy’s. Mark Haddon’s novel, The Curious Incident of the Dog in the Night-Time,  became an international bestseller. Everyone, it seems, has something to say about autism. There are websites, such as Pray For Autism Now, Neurodiversity.com. The question is, what are these blogs, memoirs, essays and websites saying? Whose are the stories being heard, and what are they saying?
   
These questions, and the desire to write about and understand my own story, compelled me to attend the fall 2005 Conference, “Autism and Representation” at Case Western Reserve. While there, I met [coeditor] Bruce Mills, who teaches English at Kalamazoo College in Kalamazoo, MI. He has a son with autism and a neurotypical daughter. While we were talking on our way to the airport, we suddenly realized that my hometown of Storm Lake, Iowa was his as well! More remarkably, he remembered my brother. As the captain of his school patrol at West Elementary School, as a young boy of twelve responsible for guiding kindergartners through fellow sixth graders across streets, Bruce would leave the brick, two-story square building and see my brother on the corner of Hyland Drive and West Sixth Street, a somewhat rigid, reliable presence, ready to cross.

For us, our book arises from what we both have witnessed and experienced in different ways: the need for and the power of shared tales.

For us, our book—Siblings and Autism: Stories Spanning Generations and Cultures—arises from what we both have witnessed and experienced in different ways: the need for and the power of shared tales. While we were talking at the conference, we came to the realization that while there is an increasing explosion in memoirs by parents—as well as individuals with autism themselves—there has been far fewer explorations of the sibling relationship. There also has been little exploration (with the significant exception of Richard Roy Grinker’s excellent book, Unstrange Minds), of autism from a multi-cultural perspective. Bruce and I wanted to make a step toward addressing these gaps with our book. The first person accounts in Siblings and Autism provide a window not only to what it is like to grow up with a sibling with autism today, but also what it was like to grow up with a sibling in the era before the Individuals with Disabilities Act. Each essay is an account of two childhoods, that of the writer and their sibling.

What is autism?
Defined as a neurological disorder characterized by sensory over stimulation, difficulties in processing stimuli, and challenges in social interaction and communication, autism was first diagnosed by Leo Kanner and Hans Asperger almost concurrently in 1943 during the birth of child psychiatry after World War II, a period when scientists began using medical knowledge to understand children’s behavior. Autism (including Asperger’s Syndrome, usually thought of as high-functioning autism) and more precisely the array of conditions that has been termed Autism Spectrum Disorders (or ASD) occurs in every country and affects every race and every class. It is generally regarded as highly heritable, and, according to the American Psychiatric Association’s diagnostic manual, its triad of impairments include “deficits” in social interactions, communication, and symbolic or imaginative play. Significantly, an autism diagnosis arises from close observation of behaviors, not from any blood analysis or, at least currently, from genetic testing.  However, with a range of educational and therapeutic interventions, the more debilitating effects of autism can be somewhat alleviated, although it is a life-long disorder. 

How did you approach this project?
We wanted the essays in the collection to be as diverse as possible—to span generations, cultures, ethnicities. We wanted the collection to provide a history, a sense of the way various generations have experienced growing up/aging with a sibling with autism. Because the history of autism encompasses a history of institutionalization, more than a few of the essays in the collection recall the day their sibling left home to live in an institution. Many of these essays, such as Anne Barnhill’s “Visiting Becky,” are heart-breaking in their depictions of the family driving away, and leaving the brother or sister behind.

In these essays, we sought writers within the United States and beyond, advertising in the publications of writing organizations, sibling networks, and autism agencies from around the world. The project took approximately four years.

Why siblings?
What tends to be lost in the midst of our discussions on autism are the voices of the individuals themselves, and their unique stories.  Autism is not a monolithic construct. The lives represented in this anthology—those of the siblings—are descendents of multiple cultural heritages, generations, and ethnicities. They are from a diverse class and personal lifestyles, reflecting multiple sensibilities. Most of the stories about autism tend to reflect a white, middle-class academic background, and one of the goals of this anthology was to present a more diverse reflection of the experience of autism on families.

We need other narratives, narratives that tell more complex, inclusive stories that combat the notion that autism can be cured, if you just love your child enough.

We need other narratives, narratives that tell more complex, inclusive stories that combat the notion that autism can be cured, if you just love your child enough—narratives offered by parents such as Jenny McCarthy with her “warrior mom” stories. Recent challenges to these narratives include autistic authors on blogs and websites and Neurodiversity.com, which articulate that autism should be seen as a culture, much as people in the deaf community view themselves as part of a culture, and not as a problem. As a result, they say they do not wish to be “cured” and find talk about a cure threatening to their way of being in the world and their sense of individual identity.

The “warrior mom” tradition—where by dint of the mother’s unending hard work and sacrifice the child miraculously recovers—create another pernicious text, much like Leo Kanner’s “refrigerator mother” theory.  There, the mother created the autism by her inability to love, and so her child, too, could not love. The “warrior Mom” genre that we have now presumes that if you do not love your child enough, your child will not recover.  Such a message creates an added burden that nobody needs. It is simply another form of parent-blame.

Sibling stories, in contrast, tend to be full of the motif that they created some of the problems—that it was something that they did—or that there is a need, somehow, for them to compensate, that they must be the child that somehow “makes up” for the perceived deficiencies in the other child.

Sibling stories, in contrast, tend to be full of the motif that they created some of the problems—that it was something that they did—or that there is a need, somehow, for them to compensate, that they must be the child that somehow “makes up” for the perceived deficiencies in the other child. Thomas Caramagno moving tells of his quest to compensate by being a great intellect, a similar story told by Maureen McDonnell, who writes, “I have spent my life passing, proving that genetics are a fluke, that my parents aren’t incapable of raising children . . . Thanks to work and stubbornness, I’ve managed to fulfill the trappings of a successful child.” The urge to overcome comes with its own trappings of guilt as well as the often-present accompanying silence—how to explain the family narrative, particularly in a time when so little was known, and the very little that was known was so clearly ill-informed. Many of these essayist, such as Caramagno, were fortunate to have parents who were very much involved in trying to understand, and overturn, those pernicious narratives.

At their most poignant, sibling stories recount how to construct the obligation of caring for someone with a disability, and the struggles and complications involved in honoring that commitment, particularly with the realization that this reality shall, in all likelihood, remain constant. And, when dealing with the likelihood of a genetic component to autism, siblings must also consider the very real likelihood that their own children may, perhaps, also have autism.  Erica Nanes’, in her essay, “Family Resemblance,” confronts this question when her friend has a baby diagnosed with Downs’ Syndrome and decides to have an abortion since, “we wouldn’t be very good parents to a child like that.”  Nanes asks herself the same question:  If my only choice were a child with autism or none at all, what would I do? I don’t want to ever imagine the question. But it hovers, unanswered, nonetheless.” At its core, then, these essays ask the very real question of the nature of our obligations toward each other, as well as our obligations toward ourselves. Negotiating these boundaries can be extraordinarily difficult. There are no easy answers.

At its core, then, these essays ask the very real question of the nature of our obligations toward each other, as well as our obligations toward ourselves.

Personal essays can reach, and help us understand, these complex human ties and boundaries in a way that clinical studies cannot. For one thing, the personal essays can reach out and help us understand in ways that reach beyond potentially stigmatizing clinical language by focusing on the very real human stories. (We have a tendency as humans to love to focus on categories, rather than individuals). The personal essay reveals that all experiences are unique, that all responses are unique, and they also importantly point out the tremendous growth and understanding that has been reached in the past fifty years in understanding autism. Stories, as well, give us a human face to a problem that too often remains faceless. And it is the human face, the human story, that allows others to enter into the narrative, and appreciate the struggle. We lose our fear that is a creation of ignorance and through knowledge and empathy gain human connectedness.

While many of the essays in this anthology do have a similar trajectory—identifying difference, and the struggle to acknowledge, accept, and understand the difference—they reveal most tellingly the tremendous strides that we, as a society, have come to in understanding autism, as well as the distance we have yet to travel. Essays such as those by Erika Giles and Cara Watkins are among the many that focus on the lack of knowledge regarding autism in the 1950s, when next to no one knew anything about the disorder. Such a diagnosis invariably meant a life in an institution. The annual journey visiting her brother, as well as the accompanying feels of remorse and guilt, are movingly evoked in Giles’ “Robie.” Lindsay Fisch’s essay, however, shows how much more knowledge and understanding people have of the condition. In this essay, Fisch calls the fire department to come rescue her brother from his entrapment in the laundry chute, and when she says, “He’s autistic,” she can, amazingly, count on the fact that volunteer at 911 will know what she means. Ten years ago, no one could have felt that way.

How did you go about putting the book together?
We contacted autism agencies from around the world, hoping to receive international stories; the fact that our efforts yielded only a few essays does, we think, represent the great need for these stories, as well as the cultural and societal forces that make these stories difficult to tell: the sense of guilt, the sense of blame, that all too often is the legacy of a diagnosis of autism.  Essays such as Helen McCabe’s “My Family Has Two Hearts,” and Aparna Das’ “Life with Runi,” as well as Alison Wilde’s “Siblings Aren’t Doing it For Themselves,” represent a start at placing the experience of autism within a cultural context, revealing the cultural biases that exist. Autism, for instance, was not diagnosed in China until 1982, according to McCabe, and the inherent understanding remains that the condition is a legacy for some type of family wrongdoing. In Das’ essay, Das is uncertain that she will be able to find someone who can understand her situation (a not uncommon feeling) and when she does, her sister with autism moves in with the family—a response that works well for them, but is much less likely in a society such as the United States with its strong emphasis (for good or ill) on leaving home and setting up an independent, more nuclear and less extended family.

We need a more multicultural, global, understanding of autism, which reflects our current awareness that health, medicine, and disability are social constructs, that they are culturally coded.

We need a more multicultural, global, understanding of autism, which reflects our current awareness that health, medicine, and disability are social constructs, that they are culturally coded. The only book to the best of our knowledge that has explored autism within a cultural context, and how that is defined, would be Richard Roy Grinker’s Unstrange Minds. How is autism understood—or not—in other cultures and countries? How visible is it? How has our understanding of it changed, in terms of family dynamics, across generations?  How do families, and siblings in particular, respond to these very human and very real challenges?

What do we hope to accomplish?
Many of the essays in Siblings and Autism have a similar trajectory—identifying differences and the struggle to acknowledge, accept, and understand those differences. I think that the book is a testament to how far we have come in understanding autism. Now, for instance, when I talk about having a brother with autism, people nod—they don’t say, “What does he paint?”

We also feel that personal stories can represent, and help us understand, these complex human ties and tensions in a way that clinical studies cannot. For one thing, such writing can be the means of reaching beyond potentially stigmatizing clinical language by conveying lived experiences in vivid ways. The personal essay reveals that, though stories may share common plotlines, the individual voice has its own inflections and lyrical power.

Art is empathy. While the goal of this volume is to collect the work by siblings and to foster empathy and understanding to those who seek it, it also aims to recognize these writers’ valuable contributions to literature as a whole—to underline connections rather than to isolate differences.

Art is empathy. While the goal of this volume is to collect the work by siblings and to foster empathy and understanding to those who seek it, it also aims to recognize these writers’ valuable contributions to literature as a whole—to underline connections rather than to isolate differences. When we use the term “empathy” in relation to this writing and our book, in fact, we have even more in mind, i.e., a notion of creative scholarship that often combines research with experiential knowledge. Mark Osteen, organizer of the conference where Bruce and I first met, defines this work as empathetic scholarship. These critical and creative endeavors, he argues, “[encompass] the broader goals of disability studies: to produce and disseminate work that combines scholars’ personal and professional lives in mutually beneficial ways and also makes a difference in the non-academic world” (“Introduction” 8).  In short, these essays consistently demonstrate an ardent effort to connect, to understand our common humanity, and to find one’s place among others.

While there is great value in critiquing our understanding of what is “normal” and in seeing the contributions of those who are neurologically atypical, it is also important to realize that doing so does not—and cannot—eradicate the challenges of those with neurological disorders or differences, however we choose to speak of it. Reading and reflecting upon well told (or some times less frequently told) stories, however, can illuminate how part of our problem lies in consistently thinking of ourselves in isolation from others. Our shared work, then, is the toil of understanding, the labor of living with and sharing our different ways of knowing in the world. To live together in this space, we believe that there is the need to hear and to honor these stories, all of them.

What are the most common misconceptions about Autism?

The whole notion that you can cure a child of autism if you work hard enough, and love that child enough is, in my mind, a fresh, modern form of parent-blaming—a new, insidious modern twist on Bettelheim’s mother-blaming.

I think one of the most insidious is that autism can be cured. It can’t. I have read in many places that if only you love your child enough—or pray hard enough—you can cure autism. Jenny McCarthy’s books espouse this theory. The whole notion that you can cure a child of autism if you work hard enough, and love that child enough is, in my mind, a fresh, modern form of parent-blaming—a new, insidious modern twist on Bettelheim’s mother-blaming.

Another common misconception is that vaccines cause autism. They don’t.

What books or websites do you recommend?
Sibling websites include The Sibling Support Project, or “Sibs,” a site for brothers or sisters of disabled children or adults.

Books:
Siblings of Children with Autism: A Guide for Families by Sandra L. Harris and Beth A. Glasberg (Woodbine 2003).

Unstrange Minds: Remapping the World of Autism by Richard Roy Grinker (Basic Books 2008) is on of the best discussions of autism out there.

Thanks for taking the time to talk with us today, Deb. How can people find your book?

Siblings and Autism is available for order at your local bookstore, Amazon, or B&N.com or you may find it through your library.

Siblings and Autism: Stories Spanning Generations and Cultures 
Debra L. Cumberland and Bruce E. Mills, eds.
Jessica Kingsley Publishers, 2011
ISBN: 978-1-84905-831-5

Categories: Autism, Essays, memoir

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