The Journey Out of Autism
By Raun K. Kaufman
Does autism scare you? If so, you’re not alone. Who wouldn’t be afraid, given the messages of fear, hardship, and hopelessness that many parents and professionals are bombarded with when it comes to this particular disorder? After all, what are we told? First, we’re told about the staggering increase in autism spectrum disorders over the last several years. We are informed that a condition that once touched less than one in 10,000 children the United States today affects more than 1 in 500 – in some areas, more than 1 in 250! People with autism are described to us as anti-social, disconnected people with no imagination who spend their days engaged in bizarre repetitive behaviors or who, if verbal, endlessly perseverate about inconsequential minutia while remaining socially detached, unable to form relationships with others. And, by far the most devastating, it is asserted that children receiving such a diagnosis have an irreversible, lifelong affliction, leaving many of us with little or no hope for our children’s future improvement or recovery. But does it have to be this way? Or can we blaze a trail to lead ourselves out of the fear and the darkness and into the arms of our children?
But does it have to be this way? Or can we can blaze a trail to lead ourselves out of the fear and the darkness and into the arms of our children? We do not have to settle for these dim prognoses. How do I know? Well, I used to have autism. Now I know the words “used to” may be throwing many of you for a spin. We don’t see those words on the same page as autism, let alone in the same sentence. And yet, at the Autism Treatment Center of Americaâ„¢, where we teach a unique treatment modality called The Son-Rise ProgramÂ®, we see children defy their prognoses on a regular basis. In fact, I was the very first child to be helped with this program.
At 18 months, I was diagnosed as severely autistic, with a tested I.Q. of less than 30. Completely mute and withdrawn from human contact, I would spend my days endlessly engaged in repetitive behaviors (often termed “stimming” in the current lingo) such as spinning plates, rocking back and forth, and flapping my hands in front of my face. I didn’t want to be touched, I never looked at other people, and I did not give the slightest response to the calls and requests of the people around me. I was, in every way, “in my own world.”
My parents were told to expect no change in my development (or non-development, as the case was). It was explained that I would never speak, never have friends, never go to school, never learn to communicate with others in any meaningful way. My condition, it was said, was incurable, unchangeable, and “hopeless.” The prognosis was stark: I would be autistic for the rest of my life. The professionals recommended eventual institutionalization.
My parents searched diligently for a way to help me progress, but were offered none. They sought a ray of hope but were handed only dark predictions. And so they did something truly amazing. With no support, without anyone to help clear a path for them, they blazed a trail of their own. Marking a complete departure from traditional methods of “treatment,” my parents designed and implemented an innovative and groundbreaking program that was both home-based and child-centered. And, thus, The Son-Rise Program was born.
After working with me for over three years, my parents achieved what the experts had deemed “impossible.” Their Son-Rise Program enabled me to recover completely from my autism 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 worldwide, 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.
Although, unfortunately, so many children are still, at an early age, being given the life sentence that was once handed down to me, parents today do not have to acquiesce to such a verdict. 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, USA, we teach a system of treatment and education designed to help families and caregivers enable their children to dramatically improve in all areas of learning, development, communication, and skill acquisition. We have worked with thousands of people from across the globe, and achieved results that have changed the face of autism and other developmental disorders worldwide.
Currently, we offer several types of programs, including an introductory program which provides parents and professionals with all of the tools they need to design, implement, and maintain a child-centered Son-Rise Program. This week-long program, called The Son-Rise Program Start-Up, teaches – through slides, videos, lectures, interactive activities, and question-and-answer sessions – the educational techniques, strategies, and principles of The Son-Rise Program so that people can understand their children with autism, PDD, etc., and thereby use that understanding to facilitate the kind of learning and growth in their children that they may have been told was simply not possible.
At the Start-Up, we teach everything from facilitating interaction and getting eye contact to developing speech and language and dealing with tantrums and repetitive “stimming” behaviors. We also address in detail subjects such as creating a special work/playroom for optimal learning and recruiting and training a team of volunteers. Additionally, we provide attitudinal training so that parents and professionals can maximize their effectiveness in each and every moment spend with their children. Participants often leave at the end of the program not only with concrete tools and techniques, but also with a permanent shift in perspective – from pessimism to optimism, from despair to hope.
We offer this program several times a year on our campus in the United States. Of course, if you have questions, you can call us at (413)-229-2100 or you can find us on the web at www.son-rise.org.
The foundation of The Son-Rise Program rests upon this idea: the children show us the way in, and then we show them the way out. This means that, rather than forcing children to conform to a world that they don’t understand, we begin by joining them in their own world first – before asking them to join us in our world. In this way, we establish a mutual connection and relationship – the platform for all education and growth. Keep in mind that interaction is the #1 challenge for this group of children as well as the deficit most often cited by parents as to where they would like to see their child progress. Our primary focus, therefore, centers around helping these children to interact with, connect with, and form relationships with others. Furthermore, we want these children to want interaction, as well as to act spontaneously rather than by rote training. The key is to have these children “on our side” and interested in what we are trying to convey to them. Then, we can teach our children everything we want them to learn with exponentially greater success, speed, and ease.
We find that a non-judgmental and optimistic attitude is crucial to effective implementation of this principle. Therefore, we never label our children’s repetitive and ritualistic behaviors as inappropriate, wrong, or bad. In fact, we do not judge any of our children’s challenges – even if they don’t change. At the same time, we look for the possibilities, not the deficiencies, in the children we work with. We do not put limits on the future of any child. Thus, we open the door for limitless growth and progress.
One specific technique derived from this principle is joining. This means that when a child is doing a particular repetitive, exclusive behavior (i.e. stacking blocks, flapping hands, etc.), we do not try to stop the child from doing this. On the contrary, we do this activity with him! When people saw my parents joining me, they attempted to discourage my parents from doing this. “You’re just reinforcing his repetitive behaviors. He’ll only do it more,” they said. Luckily for me, my parents didn’t listen to these naysayers (who, of course, had never tried the technique they were disparaging). What we have seen time and time again with thousands of children with autism spectrum disorders is that, as a result of joining, children do their repetitive behaviors less, not more. Moreover, we find that children consistently look at and interact more with people when they are sincerely joined in their repetitive activities. We are teaching these children the very skill they lack: how to create relationships by building on common interests.
A second technique is to facilitate skill acquisition by capitalizing on a child’s own motivation. This means that we use each child’s own motivation as a teaching tool. The concept upon which this principle is built is the following: learning is the single largest factor for growth. This concept is well understood, seen throughout every area of learning, and is not disputed. We know that children and adults, regardless of ability level, learn more and learn it faster when they are motivated by and interested in what they are learning. Yet, we seldom see this principle utilized, especially when it comes to children with special needs.
Often, the mode of learning and the children’s interests are not matched. In the case of children with autism spectrum disorders, traditional learning modalities will rarely be motivating. Therefore, we must customize the presentation of curriculum to match the child’s highest areas of motivation. If we match our goals to each child’s area 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. This way, we use the learning skills and interests our child already has instead of trying to “run against the wind” by teaching in a way that doesn’t work for our child. Thus, learning is exponentially increased – with a unique and startling benefit: we have our child’s willing cooperation.
I want to conclude by returning to the issue of fear and hope. Everything discussed above is predicated on the idea that a non-judgmental, non-fearful, hopeful attitude is absolutely critical to the effective rapport-building, socialization, and education of any child (or adult) on the autistic spectrum. Attitude is not apart from the techniques; it is a part of the techniques – arguably the most important part. Fundamentally, we at the Autism Treatment Center of America see our children as a blessing, not a curse. And yet, so many others are surrounded by fear-promoters using terms like “lifelong condition,” “tragedy,” “irreversible,” “institutionalization,” and, of course, “false hope.” Who decided that a life sentence was better than an open door and an outstretched hand? These terms, and the ideas behind them, will not get our children anywhere. (They won’t get us anywhere, either.) If we really want to help our children, let us dare to promote hope instead of fear, acceptance instead of judgment, optimism instead of dire predictions. Then our children can truly touch the stars, because they will be standing on our shoulders.