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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 America,
where we teach a method of treatment and education
called The Son-Rise Program®, 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 me
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 Program®) 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
America. 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 America,
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 Program®.
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.
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