Moving the Mountain: Autism, Recovery, and the Answer “Yes”
By Raun K. Kaufman
Our lives are filled with instances in which other people tell us what they think our limits are. There is no shortage of individuals willing to volunteer their thoughts and perspectives as to what is not possible for us. It therefore behooves us to ask ourselves: Can we, as human beings, overcome circumstances that others have deemed insurmountable? In my highly biased opinion, the answer is “yes.”
Let’s take one type of circumstance in particular: autism. The very word itself often conjures up strong reactions. We are told that autism is an irreversible, lifelong condition. Such a diagnosis often leaves parents devastated, with little or no hope for their children’s future improvement or recovery. With the incidence of autism exploding in the U.S. and other countries, the question becomes more urgent. Can we help our children to overcome a condition most people insist is insurmountable?
At the Autism Treatment Center of Americaâ„¢, where we teach a method of treatment and education called The Son-Rise ProgramÂ®, we confront this question every day.
We work with parents of special children from around the world, many of whom have been told that the answer to the above question is “no.” When we work with these parents (and professionals), we teach them specific techniques, strategies, and principles designed to enable their children to dramatically improve in all areas of learning, communication, skill acquisition, and overall development. However, the first step is always the same: helping parents change their answer to this critical question from “no” to “yes.”
For me, my decidedly biased “yes” is based upon my own experience. You see, I used to have this “insurmountable” condition called autism.
As my first year of life drew to a close, I began to withdraw from human contact. I ceased to look at people, instead becoming enamored with inanimate objects. When picked up and held, I would let my arms dangled lifelessly at my sides. As the months progressed, I retreated more and more into my silent world. I became mute, displaying not only a lack of concrete language, but also an absence of any apparent effort to communicate at all, such as crying or pointing. When others would reach out to me, I shied away from their touch as if it would burn me. Then I began to exhibit unusual repetitive behaviors. I would spend endless hours spinning plates, rocking back and forth, or flapping my hands and fingers in front of my face.
My parents took me to an array of specialists. Batteries of tests were given. Observations were conducted. The focus and experience of the professionals was brought to bear. And, finally, the diagnosis was rendered, with downcast eyes and sad faces. It was explained to my parents that I had severe autism, with a tested I.Q. of less than 30. It was all conducted with great sorrow, as if someone had died.
And, with this diagnosis came a prognosis darker than the blackest night. Autism, the doctors explained, was an incapacitating, life-long condition – an incurable, irreversible affliction they described as “hopeless.” A box of impossibilities built around me, sealing me in and separating me from all of the things outside this box that it was decided I “would never” accomplish. I would never learn to speak or relate to other people. I would never learn to read or write. I would never prefer people over objects. I would never play baseball, go to school, write poem, hang out with friends, or go out on a date. I would never say, “I love you” to my parents. It was asserted that I would probably never learn to communicate in any meaningful way.
Eventual institutionalization was recommended. Future life landmarks, like going to the prom, graduating from high school, going to college, having a career, getting married, and having children – all of these things were deemed closed to meâ€¦and I had not yet reached my second birthday.
And it was then, in what could have been my parents’ darkest moment, that they shined from themselves the brightest light. They decided to see me, not as a tragedy, but as a blessing. In spite of all of the doom and gloom around them, they chose a different perspective. What others called hopeless, they called hopeful. What others deemed impossible, they saw as possible. And, truly, this was the foundation of what would become a transformational program for me and thousands of others down the line.
My parents decided to embrace me as I was, in advance, before I changed in any way. At the same time, they had a sense of boundless optimism about my future and what they could do to influence that future. Certainly, they had no idea where I would end up, but they did, at least, believe that they were capable of useful action, and I was capable of limitless change. You see, it was precisely because my parents combined an attitude of nonjudgmental caring on the one hand with a belief in my capacity for growth (without putting any ceilings on that growth ahead of time), that my recovery was made possible.
When we work with parents, we find that perspective and attitude are the first things to address because all action proceeds from what we are thinking, believing, and feeling. As well, we find that children with autism spectrum disorders respond much more favorably to those who greet them with sincere comfort, enthusiasm, and a lack of judgment.
Once my parents were clear about where they wanted to come from attitudinally, they proceeded to design and implement their own home-based, child-centered program (The Son-Rise ProgramÂ®) in an attempt to reach me and facilitate my development. This program, where “the children show us the way in, and then we show them the way out” was like no other method my parents had seen.
One of the first – and most controversial – things that they did with me was a method we call joining. This means that, rather than forcing me to conform to a world that I didn’t understand, they joined me in my world first. When I would spin plates, they would get a plate, sit down next to me, and spin plates with me! Although some said (and still do, surprisingly) that this would only reinforce my “inappropriate” behaviors, the exact opposite occurred. I began, for the first time, to look at my parents, to connect with them, and to engage with them in their world.
Joining is one of the first techniques that we teach people at the Autism Treatment Center of Americaâ„¢. It is the key first step to building interaction, rapport, and meaningful connections with our children. And it is precisely these factors that form the platform for all education and growth.
As they built more and more of a connection with me, and as I ventured farther and farther beyond the confines of my world, my parents began to teach me by utilizing my own motivation. They would take items or areas of interest that I already had use these to teach me the things I needed to learn. Because they went with my motivation rather than against it, there was no push-pull, no fighting, and no struggling. Certainly, many things were challenging for me, but my parents found that I was far more willing to stretch myself to meet these challenges in the context of games and activities centered around my own interests.
Indeed, we see this with all children with which we work. When we match our goals to each child’s primary areas of motivation, the result is a highly effective symbiotic marriage between skill acquisition (social interaction, toilet-training, language development, etc.) and a particular child’s natural areas of interest. Thus, learning is exponentially increased – with a unique and startling benefit: we have the child’s willing cooperation.
My parents put together a number of additional techniques and factors to construct this program around me. They always taught through interactive play, making sure never to sacrifice the overall goal of interaction and socialization in their pursuit of specific goals, such as toilet training or usage of particular words. In order to reduce overstimulation, as well as control-battles, my parents conducted the entire program in one small room. In fact, over the years, we’ve perfected The Son-Rise Program Playroom, so that, no matter what type of child a parent or professional is working with, we can help them put together an environment that is safe, distraction-free, and conducive to interpersonal interaction.
Another important factor in my program was a restricted diet. In the early seventies, people didn’t know about gluten and casein, but my parents saw right away that I was having adverse reactions to dairy. They removed dairy, most meat, sugar, and artificial colors, flavors, and preservatives from my diet. (Notice that wheat is conspicuously absent from this list. In those days, wheat was considered one of the most healthy foods around. How ironic.) Although, now, I can eat whatever I want (and have been doing so for all of my adult life), at the time, this dietary intervention was an important component of my program.
At the Autism Treatment Center of Americaâ„¢, we continually explain to parents how critical dietary intervention can be for their children. We recommend that parents begin right away by removing gluten, casein, sugar, and caffeine from their child’s diet. Once this is done, we recommend getting some tests done and doing some research in an effort to locate other foods, such as soy, tomatoes, and artificial additives, that may be exacerbating their child’s condition.
Over the course to more than three years, my parents’ Son-Rise Program enable me to recover completely without any trace whatsoever of my former condition. I graduated with honors from high school, went on to earn a degree in Biomedical Ethics from an Ivy League university (Brown University), and then directed an educational center for school-aged children. I now lecture internationally at conferences, symposia, and universities, as well as being an author, teacher, and the Director of Global Outreach for The Son-Rise Program at the Autism Treatment Center of America.
After my recovery, my father, Barry Neil Kaufman, wrote a book relating our story in detail. The book, entitled Son-Rise: The Miracle Continues, was later recounted in an NBC television movie. In the avalanche of press and attention that followed the publication of the book and subsequent airing of the television movie, my parents were flooded with requests for help.
Therefore, in 1983, they founded what is now known as the Autism Treatment Center of America (a division of The Option Institute, a non-profit, charitable organization), which is dedicated to helping parents and professionals caring for children with autism, autism spectrum disorders, PDD, and other related developmental challenges. At our center, located in Sheffield, Massachusetts, we run a series of weeklong training courses for parents and professionals in all aspects of The Son-Rise ProgramÂ®.
And, yet, all of this – my current life, our non-profit educational center, and the thousands of families worldwide who have been touched by this work – comes back to one single question, and one crucial answer. My parents dared to ask: Can we help our child to overcome a condition most people insist is insurmountable? Their answer changed the face of autism and other special needs across the globe. It also changed my life.