Articles

Reprinted from AMIT magazine, Spring 2004

Reaching the Seemingly Unreachable

By Tali Field Berman

BIO: Tali Field Berman currently resides in the Jerusalem area with her husband Joshua and daughter Anava. She teaches the Son-Rise Program to families with autistic children and can be contacted for more information at tali@meirautism.org.

There was a time when most people's knowledge of autism was based on the strange and unfamiliar character Dustin Hoffman played in the movie Rain Man . However, the increasing number of people diagnosed with autism has made it a more intimate part of people's lives than ever before. Ten years ago, autism was thought to affect 1 in 10,000 individuals. Today, the National Institute of Health estimates that autism affects 1 in 250 children and adults . As a result, autism has been on the cover of Time , Newsweek and the New York Times Magazine and a tremendous amount of time and money is spent on understanding the cause and developing treatment for people with autism. Yet, many people are still unfamiliar with autism and how it affects individuals who have that diagnosis.

According to the American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders: Fourth edition (DSM IV) the symptoms for someone with autism falls into three specific categories: impairment in social interaction (such as low eye contact and/or lack of interest in developing peer relationships ), impairment in communication (such as a delay or lack in spoken language or challenge in initiating or sustaining conversation with others) and repetitive behaviors (such as hand flapping or a preoccupation with parts of an object). It is also interesting to note that autism affects people of all races, ethnic and socio-economic backgrounds and it occurs three to four times more in boys than in girls. What most people do not know is that autism has a very broad spectrum, including people who have some but not all of the symptoms and to varying degrees. This is what accounts for some people on the autistic spectrum spending their days absorbed in their own world and having very few, if any words to communicate, while others are in school and excel as students but have challenges making and sustaining friendships.

With the insurgence of autism and many dedicated parents and professionals advocating for their children and clients, autism has a much more hopeful prognosis than it once had. It was not long ago, in the 1950's and 1960's, that Bruno Bettelheim, a leading development psychologist, was the key influential figure in promoting the "refrigerator mother" theory. In his book The Empty Fortress (1967), he declared that autism was an emotional disorder caused by mothers who were unloving and inattentive to their children. For years, mothers were being blamed for their children's autism. Dedicated and loving mothers were riddled with guilt and groping for help so their children could escape the prognosis of being institutionalized. Fortunately, this archaic theory has been abolished and extensive research has found new evidence. Although the exact cause of autism is yet to be discovered, some contributing factors have been found, such as a genetic component, biological factors (such as a compromised immune system and food sensitivities), environmental pollutants and a possible link to vaccinations. As autism has become more understood, more hope is being offered to parents and new treatments are becoming available.

As more services are being offered to families, parents are faced with the question of how to choose the treatment program that will work best for their child. There are home based play therapies, such as The Son-Rise Program, designed to teach parents how to help their children strengthen their social and communicative skills. There are modalities designed to teach autistic children with a focus on routine and breaking down larger skills into more manageable parts, such as Applied Behavioral Analysis (ABA) and TEACCH. Some children are able to attend a typical school with additional speech and occupational therapy that they receive through out the week. Additionally, some schools, like the AMIT Tzemach Hasade elementary school in Maaleh Adumim, focus on an inclusion method, in which autistic children are in a typical classroom as a way to help them learn social skills from their peers. However, even with many innovative programs being offered, we are still faced with many important questions, such as how we can relate to a growing autistic population and ultimately, how we can help individuals with autism actualize their potential.

 I began to explore the answers to these questions when I first began working with Jeffrey seven years ago—and what I discovered has become some of the most powerful and meaningful teachings of my life.

Jeffrey was a 4-year-old diagnosed on the Autistic Spectrum. When I first met him he rarely looked at anyone.  He mostly recited movies and books he had memorized from beginning to end. He would tantrum often, sometimes for no apparent reason, and it was a daily struggle getting him dressed in the morning and putting him to bed at night.

I remember going to the playground with him once. He had very little interest in the other kids. When he spoke, he quoted lines from his favorite Barney movie. In a playground full of children, Jeffrey played alone. 

There were times when I would look at Jeffrey and think, having had no experience working with kids like him, how am I going to relate to, let alone help this child? To me, Jeffrey seemed unreachable.

I then began the process of learning how to reach this special child. Tw o of the many foundational concepts I learned were particularly powerful.  One explains the purposefulness of self-stimulating behaviors, repetitive and exclusive in nature— like lining up toys in a row over and over again or talking about the same topic for hours on end—common in autistic children. It is understood that “typical” people are able to organize and filter the stimulation that we are faced with constantly. Therefore, I can focus on a conversation on the phone while the television is on. For many children on the autistic spectrum, this is much more challenging, if not impossible. The constant stimulation can be like a sensory bombardment and seem very overwhelming. Some children have such sensitivity to different sounds, for example, that they are distracted by the sound of people blinking their eyes. As a way to cope, people with autism create repetitious behaviors to handle this kind of stimulation overload. They create order in a world that may seem chaotic. So how do we reach children who have created such a separate and yet purposeful world for themselves? 

This brings me to the second concept that I learned: the core challenge for any child with autism is the challenge of having relationships with other people. Therefore, to help inspire autistic children to have relationships, it is our job to make ourselves as inviting and attractive as possible.

With the understanding that Jeffrey's repetitious behavior is helping him in some way, and that his biggest challenge was interacting with other people, I learned to use his repetitious behavior as a way to build relationship by joining him in his activities . This way I was showing him that I so accepted what he was doing, that I was willing to do it with him. I made myself predictable to him and created a common ground. And so, when Jeffrey recited movies from beginning to end, I did too. When Jeffrey spent hours lining up his Thomas the Tank Engine trains, I did too. What I saw was that when I joined Jeffrey, he began to look at me more and he became more interested in what I was doing. He was then more available for me to work with him on other specific skills such as language, eye contact and attention span.  Over time, Jeffrey was less exclusive and more interactive and was able to maintain in a more distracting environment the skills that he had learned.

Jeffrey was in a home based program for three years and then graduated to attend a regular school. Not only does his teacher have no idea that he ever had any challenges, let alone a diagnosis on the Autistic Spectrum, but Jeffrey is at the top of his class. And above all, he has a group of best friends that go everywhere together. He recently performed a rap with his best friend at his school variety show in front of an audience of several hundred people.  He is not just making it, he is not just scraping by—he is thriving. Jeffrey is a child who represents the way individuals with autism can change beyond what we ever thought possible. 

I was so inspired by my experience with Jeffrey that I decided to make it my career. I have “joined” hundreds of children. I have talked about vacuum cleaners and how they work for hours on end. I have spun balls, rocked and stared. I have seen children, like Jeffrey, who at one time seemed unreachable, become an integrated part of their family or have girlfriends. I have seen children grow to such an extent that they have no sign of any challenge and have a sincere thirst to make friends.

And so, what did I learn and now teach about how to relate to and help people with autism grow to their maximum potential? From what I have experienced, the most powerful thing we can do is build a bridge from our world to theirs and back again and in that way, reach the seemingly unreachable.