Autism and the Myth of False Hope

Written by Raun K. Kaufman

Autism is incurable, right? People say it’s a lifelong condition. An irreversible brain disorder. A tragedy. According to many, anyone who says otherwise is promoting “false hope.” There’s just one problem with this point of view: it’s not true. Autism does not have to be a life sentence. And there is no such thing as “false hope.”
How do I know? My entire life is the product of what many call “false hope.” At 18 months old, I was diagnosed with autism. In fact, my case was considered severe, with no speech and a tested I.Q. of less than 30. I would spend my days endlessly engaged in repetitive behaviors such as spinning plates, rocking, and flapping my hands in front of my face. I never looked at others nor did I give the slightest response to the calls and requests of the people around me. I was “in my own world.”

As I’m sure you can imagine, my parents were told many things about what my future would hold. No change was to be expected in my development. I would never speak, never have friends, never go to school, never learn to communicate with others in any meaningful way. The professionals recommended eventual institutionalization.

My parents, however, decided to make a complete departure from traditional methods of “treatment.” They designed and implemented an innovative and groundbreaking program that was both home-based and child-centered: The Son-Rise Program®.

After working with me for over three years, my parents achieved what the experts had deemed “impossible”: my complete recovery from autism with no trace of my former condition. After living a normal childhood, then earning a degree in Biomedical Ethics from Brown University, I went on to direct an educational center for school-aged children. I now lecture internationally, as well as being an author, teacher, and the Director of Global Outreach for the Autism Treatment Center of Americaâ„¢.

Unfortunately, many parents today are still not given full information about all of theoptions available to them. However, I would want parents to know that they do not have to face the lack of 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 entitled Son-Rise: The Miracle Continues (later the subject of an NBC television movie).

Then, in 1983, my parents founded what is now known as The Autism Treatment Center of America, a division of The Option Institute, a non-profit, charitable organization, located in Sheffield, Massachusetts. Our center is dedicated to helping parents and professionals caring for children with autism, PDD, autism spectrum disorders, and other related developmental challenges. 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. Having worked with thousands of people worldwide, we continue to achieve results that have forever changed the face of autism and other developmental disorders.

Currently, we offer an introductory program called The Son-Rise Program Start-Up, which provides parents and professionals with all of the tools they need to design, implement, and maintain a child-centered Son-Rise Program. This training course is offered several times a year on our campus in Massachusetts, and we will also be sending a team of teachers to London from 13 to 17 January 2002, to teach the full Start-Up program at that time.

The foundation of the program rests upon this idea: the children show us the way in, and then we show them the way out. In this way, we establish a mutual connection and relationship, which is the platform for all education and growth. Then, we can teach our children everything we want them to learn with exponentially greater success, speed, and ease.

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! We find that children consistently look at and interact more with people when they are sincerely joined in their repetitive activities. This unlocks the door to the child’s world.

Another key technique is to facilitate skill acquisition by capitalizing on each child’s own motivation. Since, for these children, traditional learning modalities will rarely be appealing, we customize the presentation of curriculum to match the child’s highest areas of motivation. This way, we use the particular skills and interests our child already has to maximize learning globally.

I could discuss other principles and strategies, but, instead, I will end where I began: with one all-important note. People have accused us of advocating “false hope,” asserting that we cannot guarantee that all children will turn out like me. This is true. No one can guarantee that. But does this 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 very idea of “false hope” means that there are times when hoping can be bad, wrong, or inappropriate. Because I have seen over and over again, in my life and in the lives of countless others, that hoping only helps and never hurts, I do not believe that hope can ever be “false.” 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. You should never have to apologize for giving your child a chance. Hope leads to action, and without action, none of these children can be helped.

For more information on The Son-Rise Program®, please call 1-800-714-2779 or visit our website at www.son-rise.org.

Articles >> Autism and the Myth of False Hope
Link between Autism and Rett Disorder Found
FEAT DAILY NEWSLETTER Sacramento, California http://www.feat.org
“Healing Autism: No Finer a Cause on the Planet”
Link between Autism and Rett Disorder Found

A new genetic study, conducted by Duke University Medical Center researchers, has shown that two similar neurodevelopmental disorders – Rett disorder (RD) and autism – once considered to be clinically distinct, may not be as different as previously believed. The researchers’ findings suggest that female patients who have been diagnosed with autism should be considered for genetic screening to detect the presence of a mutation in the MeCP2 gene, which is known to cause RD.

Both disorders are considered pervasive developmental disorders and, while both share many clinical similarities, RD is characterized by a smaller-than-normal head size (microcephaly) and loss of ability to control ones’ hands. Generally, RD, which overwhelmingly strikes girls, is a progressive disease that ultimately leads to severe mental retardation by early adulthood; autism’s symptoms tend to be more diffuse and not as progressive.

“Screening patients with autistic disorder for the MeCP2 gene, especially the girls, could help us better classify the patients and may give clues to long-term prognosis in the disease,” said Margaret Pericak-Vance, director of Duke’s Center for Human Genetics (CHG) who together with John Gilbert and Dr. Jeffery M. Vance are the lead researchers on the project. With its
collaborators, the CHG runs one of the largest programs aimed at unlocking the genetic basis of autism.

This finding will help genetic researchers better understand the underlying causes of autism or RD, which, over time, could lead to new insights into both disorders. While it is known that there are many complex genetic roots to autism, the genetics of RD are comparatively simpler – more than 80 percent of patients diagnosed with RD have a specific mutation in the MeCP2 gene on
the X chromosome. This mutation is not inherited, but occurs after conception.

In their study, the Duke researchers analyzed 69 girls who had been diagnosed with autism, but who showed none of the classical clinical signs of RD. They found that two had mutations in the MeCP2 gene. The results of the team’s study were presented Friday at the International Congress of Human Genetics in Vienna. In 1999, a team of researchers from Baylor College of Medicine demonstrated that a mutation in the MeCP2 (methyl-CpG-binding protein 2) gene on the X chromosome caused RD. This explains why RD almost always affects only females. Females have two copies of the X chromosome, but
only one normally remains functional in each cell. Which copy remains working is random, the researchers say, so in RD females enough normal X chromosomes remain working to support life, but the presence of the abnormal RD containing X chromosome in the rest of the cells causes the disease.

Males, on the other hand, have only one copy of the X chromosome. Therefore, boys with the RD-containing X chromosome have no normal chromosome present and die before or shortly after birth, they said. While the role of the MeCP2 gene is still seen as crucial to the development of RD, and maybe autism, new findings have muddied the scientific waters.

“In the past year or so, milder cases of RD have been found as well as males with a mutation in the MeCP2gene,” Pericak-Vance said. “This leads us to the question of what exactly is Rett disorder? “Based on clinical descriptions, we find patients who look like they have RD, but don’t have MeCP2 mutations; and we can find patients without the classical clinical signs of RD who do have MeCP2 mutations,” she continued. “However, we’re finding this occurs more and more as we get in to the
genetic roots of different diseases – what we see clinically isn’t always as straightforward once we understand the underlying genetics of a disorder.”

RD is the most common cause of mental retardation in females, with an incidence of about 1 in every 10,000 to 15,000. Children usually appear normal through the ages of 6 to18 months, then start exhibiting such behaviors as repetitive hand movements, body rocking, prolonged toe walking and sleep disorders.