Autism is on this rise. So are PDD and other related disorders. A condition that once touched less than one in 10,000 children in Great Britain, the United States, and other nations today affects more than 1 in 500 – in some areas, more than 1 in 250! Autism is now the third most prevalent developmental disorder in the world – and climbing. Unfortunately, most parents of children receiving such a diagnosis are told that their child’s condition is an irreversible, lifelong affliction, leaving many parents devastated, with little or no hope for their children’s future improvement or recovery.
Why do I care so much about this situation? Well, the answer is simple: I used to be one of those children. 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 Completely mute and withdrawn from human contact, I would spend my days endlessly engaged in repetitive behaviors (often termed “stimming” in the current lingo) such as spinning plates,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 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 and 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. They called it “The Son-Rise Program®.”
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, 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.
So, you see, this new rise in the incidence of autism and PDD is not merely an academic dinner table discussion topic for me. It means that more and more parents are facing the diagnosis that my parents faced more than 25 years ago. And, unfortunately, it also means that more and more children are, at an early age, being given the life sentence that was once handed down to me.
Thankfully, parents today do not have to face the lack of help and support that my parents faced, nor do they have to settle for a prognosis of hopelessness. 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 non-profit, charitable organization 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. In fact, the BBC’s Q.E.D. documentary, “I Want My Little Boy Back,” follows one family and their autistic son’s journey through The Son-Rise Program.
Currently, we offer an introductory program that 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 spent 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, but we will also be flying out a team of teachers to London from January 13 to January 17, 2002, and teaching the full Start-Up program at that time. 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.
For me, having the opportunity to meet and speak with parents and professionals from around the world is very special. I meet the most sincere and loving parents, all desperately searching for ways to help their special children. The whole idea of teaching these people the very same program, which has made my entire life possible, takes my breath away.
So, of course, I cannot resist the chance to tell any parents, professionals, or others touched by autism and related disorders who may be reading this article some of the principles of The Son-Rise Program. These principles are powerful. Their implementation can generate an impact that is both immediate and lasting.
The foundation of the 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, which is 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. 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 nay Sayers (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.
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. This involves locating a child’s primary areas of interest and then deciding how to teach them. 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. Although we see time and time again 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, we seldom see this principle utilized. 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.
I could discuss other principles and strategies, but, for the sake of space, I’ll simply encourage you to attend the Start-Up program. I do, however, want to end on one final, all-important note. People have accused us of advocating “false hope.’ They’ve made statements such as “Well, Raun, you can’t guarantee that all of these children will turn out like you.” This is true. No one can guarantee that. But does that mean that parents should be discouraged from hoping for their children? Does that mean that all of these children should be given life sentences? Who decided that a life sentence was better than an open door and an outstretched hand? The bottom line is, hope can never be bad or wrong or inappropriate. When I was diagnosed with severe autism, my parents decided to see possibilities where others saw none, and it was this perspective that enabled my complete recovery. Yes, it is true that we cannot know in advance what any given child will accomplish. But we must not decide in advance all of the things a child will never achieve. We – not just me, but all of us at the Autism Treatment Center of America – don’t believe you should ever have to apologize for giving your child a chance. Hope leads to action, and without action, none of these children can be helped.
By Raun Kaufman
