Feature > by Amanda Bader

Filling Elijah's Cup: A Mother's Exploration of Autism

photo by Dion Ogust

When you meet Valerie Paradiž, there doesn’t appear to be anything extraordinary about her. She’s an understatedly attractive woman, slim, dark haired, without makeup. At first glance she seems to be younger than she is, and certainly appears to have lived less than it turns out she has.

As I spent time talking to her, asking questions, watching her listen, consider and not rush to answer, I realized that, in fact, she is anything but ordinary. But, of course, that fact is clear to anyone who has read her new book, Elijah’s Cup: A Family’s Journey into the Community and Culture of High-Functioning Autism and Asperger’s Syndrome (The Free Press, 2002).

I met with Ms. Paradiž, a Saugerties resident, recently at a local restaurant. In the pleasantly noisy lunchtime atmosphere, she focused her attention completely on me. She graciously answered my questions and readily discussed the story of her life with her son Elijah, explaining how it led her to writing. What became evident during our conversation is that the last 10 years have been a journey of self-discovery. And the person Paradiž discovered is a very strong human being who has figured out how to make her life work, be meaningful, and enjoyable under what would appear to be the worst of circumstances.

Paradiž and her husband at the time, Ben, realized their child, Elijah, had medical issues when he was two-and-a-half. They had noticed that his verbal and motor skills were not developing; he repeated words and actions to a disturbing degree. But the real alarm sounded when he began to have seizures. This initiated a series of diagnostic tests that were excruciating—not only emotionally but physically, too—because Elijah was extremely sensitive to noise, light, and being physically constricted, as in an MRI machine.

Elijah’s seizures continued for about f our years, during which time the two struggled with more parenting than they had bargained for. As Paradiž became completely absorbed (and ultimately consumed) by the endless job of caring for Elijah, Ben became more and more removed from the situation. Their marriage finally came apart, something which Paradiž says was probably inevitable but was certainly hastened by Elijah’s condition.

“Soon after we split up, one autistic friend of ours told me, ‘Maybe it’s really good for Elijah that you two split up, because it gives each of you down time.’” Paradiž explained that the separation from her husband included a split in care. “His dad and I share him, which gave each of us time to recoup, rejuvenate, and get some R&R from the unremitting care that was required.” In fact they are now quite friendly and work together on raising Elijah.

Help first appeared in the form of a then-Woodstock local, Sharon Loree, who had a special way with Elijah. Loree was destined to travel with Paradiž on the road of autism exploration, as she soon realized it described many of her own personality traits. It was with Loree that Paradiž first began examining what it really means to be autistic.
In fact, one of the key points illuminated by Elijah’s Cup is that autism is not easily defined, as there are many behaviors and physical responses that are now being diagnosed as autism. Among the most common of these diagnoses is Asperger’s Syndrome, a “high-functioning” form of autism.

Though she never offers a specific clinical definition, the reader comes to recognize autism as Paradiž did, as referring to a broad range of sensory and emotional disabilities. These are manifested in behaviors that can include critically heightened sensitivity to stimuli (such as light, sound, touch), a tendency to perseverate (repeat words and sounds), and a lack of conventional social skills. In fact, the spectrum of autism is broad enough that many people are simply considered to be odd, and are never diagnosed as autistic.

Paradiž says that she realized early on in Elijah’s life that she not only wanted to write this book, but that she needed to. “When Elijah had his first seizure, I wrote a poem about that experience. Then I began writing a number of poems, and found myself writing poetry regularly. I had written before then, but I was in a kind of very long sleeper phase as a writer. The crisis with my son kind of pushed me out of that.” In fact, during the mid ‘90s, Paradiž wrote two books in an educational series for young adults and also published a short volume of fiction.

“Once I finished my dissertation in ‘98 [she received a PhD in German Literature], I knew I wanted to write a book about raising my son. Writing was a means of self-preservation in a sense. But I discovered a voice at that time; or my own voice I guess. And since then, especially since the experience of the book, I really view myself as a professional writer.”
Elijah’s Cup not only tells the story of a family, it goes far beyond to provide insight into a world that is still being defined. The narrative of day-to-day events in her and Elijah’s life is engagingly intertwined with more global observations about autism and the people it has affected throughout the last century.

When asked what she wanted to accomplish by writing the book, Paradiž explains, “Originally I wanted to write a parent memoir about raising a child with a disability that wasn’t all about treatment; you know—first we went to this hospital, then we tried that therapy, etc. Those books seem to ‘medicalize’ the child so much, and almost create an alienating separation between parent and child and also between readers and disability. So originally I wanted to do something different than that. As I came to know all these different disability activists, high-functioning autistic friends, I began to want to write about autistic culture.”

A large part of the book is an exploration of this growing autistic culture, populated by a number of well-known individuals and a core of activists. These activists are people who refuse to give up on their lives because of a medically applied label. In fact they prefer to describe themselves as being “Auties” or “Aspies” rather than as having a disease. These people are working to find a comfortable and productive place for themselves in what they have labeled a “neurotypical” society. One of the most important activists in Paradiž’s story is a remarkable individual named Jim Sinclair. Sinclair co-founded Autism Network International (ANI), a grassroots advocacy organization run by autistics for autistics.
Paradiž first met Sinclair at an annual conference that he runs, called Autreat. It’s a weeklong haven for autistics from all points on the spectrum that provides a safe and comfortable environment for them to enjoy and to learn, if they so choose. Interestingly, it is at Autreat that Paradiž, as a neurotypical, is most aware of what it’s like to be an outsider. “When I go to Autreat, there are times when I feel very much of the group, just because I’ve known everyone for years; there are also times when I feel very much outside of it.” Perhaps this is what has given her the insight to write a book that isn’t just about a disease, but that explores cultural contours and permutations while giving the reader an appreciation for the unimaginable.

Sinclair is among a growing group of autistics that refuses to accept the parameters and constraints the traditional medical community places on autistics. Paradiž writes, “Jim Sinclair says that until very recently most attempts to help autistics have been based on the notion that one should be normalized behaviorally.…Instead of teaching how to deal with sensory and social overload,…educational programs tend to focus on extinguishing behavior, like hand flapping, that might actually be ‘an attempt to communicate or to cope.’”

We talked about the fact that Elijah has been fortunate to grow up with
a mother who pushes beyond treatment to gain understanding of the different world her son inhabits. Paradiž thinks that her stints studying, living, and teaching in Germany and Japan definitely helped to make her more open-minded and accepting of cultural differences.

When asked if Elijah appreciated how different his world is than that of many autistics who were born even a few years before him, Paradiž answers, “He’s becoming more aware because I’ll share stories of their lives with him. But it’s very true that he’s growing up in a time that’s more open-minded about disability—especially disability of mind. If you’re deaf or blind, or in a wheelchair, there’s something very obvious there. The thing about high-functioning Auties and Aspies is that it’s kind of invisible. The difference is social and communicative. You can walk up to someone you meet and not even know that they’re on the spectrum, but do know that they behave ‘strangely’.”

In researching the book, Paradiž also began to realize that there are any number of well-known people who appear to have been autistic. “I found it exciting to identify prominent people who were on the spectrum. Often the characters in history that are considered to be loners or eccentrics were cues for my research.”

Several of these individuals are examined, including physicist Albert Einstein, artist Andy Warhol, comedian Andy Kaufman, and the German philosopher Ludwig Wittgenstein. These chapters lend a scope to Elijah’s Cup that takes it beyond a personal story and makes it more broadly accessible.
One surprising result of her newfound knowledge on the subject of autism was the realization that her father’s gambling abilities and intense obliviousness to the world around him were probably indications of some level of autism. Even more revelatory was Paradiž’s recognition that her own social discomfort might well result from a form of “shadow” syndrome, or very mild autism.

Was it difficult to expose herself by writing a book that, in part, describes the depths of her inability to cope with the situation? Not really. She explains, “I feel that my story resonates with others and because of that, it’s not strictly my story. I felt it was my duty to be as accurate as I could about my emotional states during all the phases of our family’s journey, for better or for worse. The response I’m getting at readings, particularly at parent groups, is astounding. Other parent memoirs I have read seem to gloss over these hard aspects of living with disability. I suppose the voice of the book rings inside other parents and gives them permission to acknowledge their own struggles with a sense of self-respect.”

Paradiž comments that her life with Elijah, now twelve years old, seems to have normalized. He has gone back to school at the Kingston Children’s Annex now, after a difficult stint at West Hurley Elementary. At Kingston Children’s Annex, Paradiž says, “He’s in a special class where all the kids are high-functioning (quite a number of them with Asperger’s syndrome) and he’s happy as can be. He has real peers there and I think it’s giving him a foothold in how to be out in the mainstream. And that’s really how our friends at ANI and Autreat function, too. It’s a safe haven to really explore who you are so that you can be out in the mainstream culture.”

Elijah hopes to be a comedian and is earnest in his pursuit of the craft. Paradiž has spent a lot of time recently studying famous comedy routines with him. When I questioned her about her playfulness that comes through in the book, she responded that until Elijah brought it out in her, it was not a part of her personality. “We do spend a lot of time just horsing around. It’s a way just to keep things up and light (or try to). And when they get really, really difficult, it can help to snap him out of things.”

During our conversation one of the very real effects of her dedication to helping her son became clear. Having been unable to commit to a full-time teaching position while giving Elijah the care he needed, Paradiž finds herself unemployed since Bard eliminated her adjunct faculty position last winter. Though she would strongly prefer to stay in the Hudson Valley, Paradiž is in the midst of a nationwide job search for a full-time teaching position at another college or university.

When asked what would be the one thing she would like to change in her life, she responds, after only a little thinking, that she would like to find the right teaching position. “I really need to be in the academic community. I love to teach and I’m so sad not to be at Bard after being there for 12 years. It’s such a loss. I want to have students and I want to be involved in intellectual exchange; I miss that sorely right now.”
Future writing plans include a biography of the Brothers Grimm, as well as a novel set in Pueblo, Colorado, where she grew up.

It was clear from our conversation that in the process of writing and promoting this book, Valerie Paradiž has found a way to deal with whatever social discomfort might have plagued her at one time. She has an unmistakable determination about being there to support her son, help this book reach the right people, and to continue her writing career. What she is doing is, in fact, quite extraordinary.