A Shift In Understanding
The first two essays in this series presented a broad overview of many of the films produced over the past forty years that have portrayed the many facets of the human condition. In this essay I want to focus on several books that have brought about fundamental shifts in our understanding of autism, its causes and its consequences.
Prior to 1964, one of the prevailing and prominent medical understandings of the cause of autism had been articulated by Bruno Bettelheim. Autism was seen as having psychological rather than physiological origins. Bettelheim laid the onus on “refrigerator mothers,” cold and intellectual mothers who had rejected their children. His solution was psychotherapy for the mother and play therapy for the children so that they could rid themselves through aggression of the rejection by their mother.
This psychological understanding of autism was rejected by Bernard Rimland, Ph.D., a psychologist for the U.S. Navy, when he and his wife, Gloria, had Mark, their second child. Their first child, Helen, was neuro-typical, but Mark was autistic. Dr. Rimland reasoned that his wife had not suddenly changed and become “cold and intellectual, a refrigerator mother.” There must be another cause. Thus began his vast reading and research and practical observation which led him to write INFANTILE AUTISM, published in 1964, and he began his life long search for answers. He was led to found and direct the Autism Research Institute (see www.autism.com/ari) and initiate the DAN (Defeat Autism Now) conferences which continue to bring together the best medical minds to share the latest biomedical research and the practical, experiential wisdom of parents. His Autism Research Review International, a quarterly publication, reviews biomedical and educational research in the field of autism and related disorders.
In 2003 Dr. Rimland edited with Dr. Stephen Edelson (the new director of ARI) TREATING AUTISM: Parent Stories of Hope and Success, one of the most important, readable, and useful books I know about. In addition to 30 chapters written by parents of autistic children, many of whom are medical doctors, telling of their success in treating their children, the book also contains a chart that shows the results of over 26,000 responses to a survey on the treatment effectiveness of Drugs, Supplements, Diets, & Misc. Therapies or Conditions. What an incredible source of information for parents and doctors! Write ARI to obtain a copy of the survey and the results or to order a copy of the book. One example of the data is the survey: “Bar graphs depicting the rating of 49 drugs and 8 nutrients by thousands of parents of autistic children note that Ritalin, the most frequently used drug, helped only 29% of the children, while making 44% worse (based on 3082 parent surveys). Compare that with the ratings of nutrient therapies.
In 1978, I was introduced to a small personal account of the mystery of autism (this was the first time I had ever heard or seen the word “autism.”) that described a unique approach to reaching a child with autism. We were living at the time in the tiny fishing village of Bucks Harbor, Maine, and our eldest daughter brought home a copy of SON RISE by Barry Neil Kaufman (1976). A classmate had given the book to Laura who simply said to me, “Daddy, I think you would like to read this book.” Such a simple, synchronistic beginning to my thirty year journey into the fascinating world of autistic savant artists. The Kaufmans’ contribution and approach was to seek to enter the world of the child with autism, to learn how and what his son, Raun, was trying to communicate, rather than demanding and forcing his son to come into the parents’ world. In 1994 the publication of SON RISE, THE MIRACLE CONTINUES, chronicles the brilliant career of this “hopelessly autistic son. Chapter 1, “Birth of a Miracle” (pages 3-26) is an excellent summary of the typical response of the “experts” of the time that autism “is a life long disability. No cure, No complete reversal.” The common advice given the Kaufmans and countless other parents was to “put Raun away, forget him, and focus their attention on their two normal children.” (page 25), The book documents the development of the Option Institute and the Son Rise approach to treatment. See www.son-rise.org or email sonrise@option.org. I WANT WANT MY LITTLE BOY BACK is a stunning VHS documentary produced by the BBC that also presents this method of treatment.
My own journey of understanding continued when a friend gave me a copy of Karyn Seroussi’s UNRAVELING THE MYSTERY OF AUTISM AND PERVASIVE DEVELOPMENTAL DISORDER: A Mother’s Story of Research & Recovery. It is one of the most significant books to enter my life. It reads like a detective story. I was given a copy, and I read the entire book in two days. It brought together some of the people and information that I had gained in two conferences in 1981 & 1982 on “Behavior (Criminal and Violent) and Nutrition” and connected them with autism. The book is the story of a mother’s quest to discover and destroy the monster that had invaded her child’s body. Her son at an early age lost all speech and eye contact. He was diagnosed as a clear case of autism. She discovered that in her son’s case: 1) there had been an overuse of antibiotics for numerous ear infections, 2) he was allergic to both milk and wheat, and 3) he had an adverse reaction to numerous vaccinations all of which together led to the diagnosis of autism. Quick intervention in all three areas led to a re-diagnosis from autism to gifted and talented. It also reaffirmed Dr. Rimland’s statement that “In the past 40 years the most significant research in the field of autism has not been done by men in white lab coats, but by mothers!” I cannot tell you how important this book is. Each Appendix is filled with resources. Page 262 has information about the Autism Network for Dietary Intervention. Both Karyn Seroussi and Dr. Lisa Lewis (author of SPECIAL DIETS FOR SPECIAL KIDS) frequently speak at the DAN conferences and founded the Network for Dietary Intervention. See www.autismNDI.com.
Lastly, in 2008, a small book of only 157 pages entered my life at just the right moment. Again, a mother, not a researcher in a white lab coat, is the expert. Told with the directness and self-confidence of an explorer of new and exciting territory, Kim Marie Lesso in BACK IN MY ARMS details her 13 year journey with her two children on the autism spectrum. Kim was told early on that her son Tad would never speak, that he was un-teachable, and that he would never even recognize her a human being. Her younger daughter, Kaitlyn, has been diagnosed with Asperger’s Syndrome. This small gem of a book is filled with practical, down to earth tips for bringing out the knowledge that her children with autism already possess. Kim learned that Tad could read before he could speak. Yes, at 16 ½ years old, he speaks and attends school and church and is somewhat of a gentle giant of a man/child. Kim can be reached and her wonderful book can be ordered through her web site at www.autismguru.com.
It seems to me that new books and films appear almost daily. I hope these resources will provide you with valuable new information for your own journey. As you discover new and helpful resources, please share them with me. My listing of resources is constantly being updated. I look forward to adding your suggestions. My life has been blessed by so many people, and the synchronicities are almost overwhelming at times.
© Laurence A. Becker“If we be TRUE
to
the integrity
of
the moment
who knows, what or where,
wonders, beasts, adventures
will sweep us UP
into their flood!
A Reflection on Synchronicity
Laurence A. Becker
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