Jessica Kingsley Publishers

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Natural Genius

The Gifts of Asperger's Syndrome

Susan Rubinyi

Paperback: £14.99 / $24.95

2006, 234mm x 156mm / 9.25in x 6in, 120pp
ISBN: 978-1-84310-784-2, BIC 2: VFX CFDM VFJD

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Chapter One

My journey begins and ends at the ocean. As a child in Southern California, I had a recurrent dream of the ocean. My parents' house was located in the mountains with only a distant view of the water. In my dream, however, the ocean appears right outside of our house, waves luminous in the early morning light. A newly born beach, covered with glistening shells beckons. I rush outside, mind and body filled with wonder and expectation. I sense I may wander endlessly into this expansive landscape, no limits to the directions my explorations may take.

I have returned to this dream/vision many times as I have navigated the often alien landscape of developing a positive approach for raising a child with Asperger's Syndrome. My journey has pushed me to the extreme limits of my creative potential, at times involving extreme pain, at times, immense joy. At the beginning, in 1986 when Ben was born, I didn't know the name of the territory I was journeying through and, in a way, this has proved to be an advantage in creating a strength-based approach.

Foremost in my mind was to try to design a method which would allow my child's gifts and potential the widest possible landscape in which to develop, I hoped free from some of the constraints I felt had blocked parts of my own development. Only later in the journey did I discover I was really on a second journey as well, one of self-discovery, for which my child's unique make-up would prove to be a catalyst for exploring issues critical to my own continued growth.

My journey has involved returning emotionally and physically to the place of my birth, Los Angeles, after a voluntary exile of 35 years. The ocean, as in my childhood, provides an immense source of solace as I begin to explore both the pain and enjoyment I experienced growing up here. Years before Ben's birth, I was planting the seeds for a method based on the child's gifts and strengths.

Two of my strongest childhood interests have provided invaluable tools for raising a child with Asperger's Syndrome—science fiction and foreign languages and cultures. Both of these interests would stretch my imagination far past previous limits of the possible. So, when I finally encountered Asperger's Syndrome, I was already intimately familiar with far more alien perspectives.

It's no accident that science fiction is often the “literature of choice” for people with Asperger's Syndrome. Many aspects of science fiction, which I began reading at age nine, have helped me immensely to understand and navigate my way through the universe of a person with Asperger's Syndrome. Fortunately, no one ever told me, as was common in the 1950s, that “girls don't read science fiction.”

Readers of SF quickly become conversant with concepts such as parallel universes and alternative dimensions where changing a single premise can totally change the course of history. In a classic Ray Bradbury story, a time traveler visiting a primordial forest accidentally steps off the path, drastically altering evolutionary history. In the Asperger's universe as well, what at first sight may appear as chaotic and incomprehensible from a neurotypical point of view, makes logical sense within the child's mind when traced back to the original premise. One example of this occurred with Ben even before the Asperger's diagnosis appeared in the Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition (DSM-IV).

In the first grade, the principal told him:

“Go back to your class.”

Curious to see what he would do, she watched him from a distance. Rather than returning to his classroom as she expected, he made his way to the gym.

“And he was completely right,” she told me, “because that's exactly where his class was at the time.”

A less perceptive principal might have criticized Ben for not following directions but he was actually following his internal logical system. Here, his Asperger's quality of interpreting things literally, “go rejoin your class,” plus his photographic memory served as strengths rather than deficits.

In the years that have followed, I've used this example of “parallel universes and alternative dimensions” as a guide to tracing the internal logic of Ben's actions and thought processes back to their original premises, enabling me and others to deal with them more effectively.

Another lesson I've learned from science fiction is to recognize alternative modes of communication—i.e., aliens who communicate through music, telepathy, telekinesis—as well as aliens whose concept of time may differ radically from ours. I've realized that Ben's emotions sometimes exist in a time warp. He may express intense sadness, anger, excitement with great immediacy but, as I investigate further, he is actually dealing with emotions related to events that happened a decade ago, with a sense of present intensity. Defining where we are in his “time warp,” as well as his mode of communication, assumes great importance in understanding how to proceed forward.

Science fiction has also shown me the consequences of genetic variation—experiments into the nature of intelligence can have unforeseen emotional and intellectual consequences. Who is to say what we may eventually learn about the genetic causes and potentially positive implications of Asperger's Syndrome? Science fiction taught me that one must always look beneath the surface—that a monstrous external appearance may house a sensitive intelligent consciousness; that what one person sees as hideous and disturbing can appear beautiful from another perspective. The literature greatly broadened my definition of the possible, widening my understanding of how the word “normal” can limit both tolerance and the imagination.

My attraction to science fiction had another, sadder side to it as well—an element of “escape from” as well as “escape to.” A part of me had always felt like an alien growing up in Los Angeles. Though I am the parent of rather than a person with Asperger's Syndrome, I live close enough to the border (on what Dr. Tony Attwood calls the “gifted eccentric side”) to understand much of the territory.

I have some idea of what it feels like to experience a strong discontinuity between whom one is inside and the surrounding environment, to feel like a “stranger in a strange land.” In French, interestingly enough, the word for “stranger” (étranger) is also used in science fiction for “alien.” Throughout my childhood, I felt as though I had somehow been transported to an alien planet whose overwhelming sensory input assaulted me, whose social customs remained a mystery to me, whose language didn't possess the vocabulary to express my thoughts and emotions. I saw myself as an exile who would one day go in search of her native land.

In addition to my love of science fiction, my background in music would also prove invaluable to raising a child with Asperger's Syndrome. From my father, a professional pianist, I inherited a gift for music, which would later pass down to Ben in even stronger form, partly because of the syndrome. My own musical training helped me recognize Ben's perfect pitch early on, his ability to reproduce exact vocal and instrumental nuances.

When Ben was a few years old, he was able to pick out Beethoven's “Ode to Joy” on the piano. Resolving not to repeat my own ambivalent experience of not having a right to choose my own instrument, I didn't try to channel him into an instrument of my choice. I vowed to let his musical ability develop in its own way so that music could always remain a joy to him.

Ben's gift would prove to have its own problematic side, that we would later understand was augmented by his Asperger's Syndrome. Someone with such an acute ear can also have hyperacuity, an over-sensitivity to sound, at times verging on the painful. His hyperacuity would make conventional classroom education extremely difficult as would his highly unusual learning style.

My own early educational experience helped sensitize me to recognize different learning styles, which sometimes run contrary to current educational theory. Reading in the 1950s was taught using a primarily visual method, the Dick and Jane readers. As an auditory learner, I was faced with daily torture and frustration, knowing inside I was perfectly capable of acquiring this new skill but needing to get there by a different route.

My intellectual potential ignored, I was placed in a lower reading group where I knew I didn't belong. Angry, I performed one of my few acts of “civil disobedience” by deliberately talking during the higher reading group. When I got into trouble, I quickly became a “suffer in silence” type who was a model of good behavior, somehow developing my own method for learning to read. Learning how to develop alternative approaches when the conventional didn't work would also stand me in good stead with Ben.

By the time I reached secondary school, I had developed a rich inner intellectual life while presenting a shy outward façade. My intelligence and creative ability weren't recognized for three years by my teachers, though they were by my peers.

“You really belong in the gifted classes,” one girl told me. “People don't realize how smart you are because you're so quiet.”

My educational experience, as with my science fiction reading, helped me realize intelligence and giftedness can take many different forms. Parents must be committed to looking beneath the surface, initially going on faith in the child's potential (this would again prove to be the case with my Asperger's son). I also learned one must search out environments and resources that will nourish the child's growth. One of these, for me, was the summer Idyllwild School of Music and the Arts, located in the mountains, combining music, nature, and eventually travel.

Almost immediately, I had finally found an environment where I no longer felt like an alien. At last, for two weeks of the year, I was among kindred spirits, intelligent, artistic, who spoke the same language. For the first time in my life, I could make friends easily (a process that continued to baffle me in school). I discovered a prototype for a nurturing environment, a model to which I would refer back as I sought to locate and/or create resources for Ben.

During the school year, in a conventional environment, my initial timidity and lack of understanding of “normal” teenage social customs often led to painful feelings of social isolation. These feelings, for a person with Asperger's Syndrome like Ben, are multiplied a thousand-fold. Though the absolute honesty of Asperger's Syndrome can sometimes be difficult to take, I prefer it to the betrayal, the subterfuge I experienced at times, inflicted on me by so-called “normal” teenagers.

For years, I buried my pain of being rejected for being different, only to have it resurface decades later as Ben's difficulties with social interactions began. I realized that if my difference from social norms lay continents away, Ben's lay light years away. One unexpected positive, however, was that I began to see difference as a potential asset with its own creative possibilities. Secondary school, though difficult, provided me with another essential tool for raising Ben—my discovery of foreign languages and cultures.

Even before I began to study French, the idea of learning another language excited me. The image of a bubble around my head came to me—that by learning a language, I would be immersed in a whole new way of thinking and feeling, a vastly different world view. Fortunately my highly gifted teacher utilized an auditory approach and I soon began to study Russian as well.

For the first time, I experienced not only being good at something and having my ability recognized but also deeply enjoying what I was doing. Somehow, when I began speaking another language I was able to enter fully into the experience, assume a different perspective; these too were skills that would prove essential for raising Ben.

I found that emotions that remained inaccessible to me in English could easily be expressed in French. I discovered that each language seemed to emphasize its own part of the emotional spectrum. Though I have since done interpreting and translating, I see these as only rough approximations of what one experiences in the original language.

With the immersion method where no English was used (we even said the Pledge of Allegiance in Russian!) our teacher taught us not only language but culture as well. Through music, poetry, cuisine, we entered a rich and complex world. I would later use these total immersion techniques in my own teaching and in raising Ben bilingually.

Towards the end of high school, however, I was beginning to develop a few close friendships among other intellectually inclined students. One of these was with Greg, a fellow devotee of Baroque music, who later would become Ben's father. The more I got to know Greg, the more I felt I had finally met someone who spoke the same language. Little did I suspect that a part of this language may well have been Asperger's Syndrome, as we would discover after Ben's birth over two decades later.

After graduation, I left Los Angeles for the University of California, Berkeley, vowing never to return to the city of my birth for anything longer than a vacation. I kept this vow for 35 years. Yet the pain of my school experience was only dormant, not extinct, and would resurface years later after the birth of my Asperger's Syndrome child.

My undergraduate education at Berkeley began the same year as the Free Speech Movement—initially a radical questioning of the political, it ultimately led to the Anti-Vietnam War protests, the sexual revolution, feminism, and the ecological movement. My years at Berkeley widened my perspective on the possible including alternate approaches and tolerance of difference. Later, one of my eventual forays into this new territory of expanding human potential would involve co-editing one of the first feminist science fiction anthologies, Aurora: Beyond Equality; published by Fawcett Gold Medal, Greenwich, CT, in 1976.

I credit Berkeley not only with broadening my understanding of different possibilities and questioning conventional approaches but also with empowering me with the courage to struggle with bureaucracies as I would need to do for searching out or creating resources for a child with Asperger's Syndrome. This struggle, unfortunately, continues to this day and part of what I see as my mission in writing this book is not only to help families but also, I hope, to encourage those in education and mental health to see the positive potential of people with Asperger's Syndrome rather than focusing primarily on the challenges.

I spent my Junior Year in France, which enabled me to acquire a level of proficiency that would one day have the additional benefit of enabling me to raise a child bilingually. For the first time in my life, I experienced what total immersion in another culture truly meant, where every aspect of life took place in a different language. Ordering breakfast, visiting museums, asking for directions required me quickly to expand my level of comprehension of native speakers who didn't slow down to pedagogical levels.

I discovered that much of my vocabulary was literary, not corresponding to everyday objects and interactions. Though I knew the literal meanings of many words, the linguistic nuances often escaped me. Once, for example, when the lights went out where I was staying, I was told: “Vous avez fait sauté les plombs,” which, literally translated means: “You made the leads jump.” Later I figured out I'd blown the fuses.

Years later, this linguistic confusion would help me understand an Asperger's Syndrome person's focus on literal rather than figurative meanings—what neurotypicals consider a deficit yet themselves experience when learning a second language.

Another aspect of my time in France closely related to the Asperger's experience involved frequently colliding with invisible walls of alien social rules. These were never explained to me in advance yet my actions were censured after the fact. The first night I arrived at the family where I would spend a year, they asked me detailed questions about my parents' professions. Taking an American point of view, I interpreted this as friendly interest. As it turned out, however, they were trying to ascertain where to place me in their social class system, an institution as alien to me as I must have seemed to them.

Fortunately, I met another, less class-conscious, family who took a genuine interest in me as a person, welcoming someone from another culture into their own. In a relaxed, friendly atmosphere of tolerance, I acquired near-native fluency in French. Later, I could apply this experience to Ben, both in encouraging his bilingualism and in helping nurture the development of the gifted side of his Asperger's Syndrome, focusing on his positive potential rather than solely his challenges. My experience abroad helped me develop compassion not only for what foreign students go through in our country but also, multiplied a thousand-fold, what a person with Asperger's Syndrome experiences on a daily basis.

By the time Ben was born, 17 years after Greg and I got married, I had already lived in France, Spain, Hawaii, and the Pacific Northwest and worked as a writer, editor, administrator, and teacher. Little did I realize that, with Ben's birth, I would be setting forth on a journey, which would take me to the utmost limits of my potential as I learned to deal with the gifts and challenges of a child with Asperger's Syndrome.

Though I was entering unknown territory, early in my pregnancy I had already made what would prove to be a crucial decision in ways I didn't imagine—the decision to raise Ben bilingually.