It is amazing what parents are able to achieve on behalf of their children. The TEACCH program in North Carolina and the career of Dr. Eric Schopler came about as a result of parent advocacy. It is said that the lack service availability in that state prompted parents to device a rather clever plan. This cunning group of parents invited their lawmakers to a Sunday brunch with the innocuous pretense of helping sick children. When the time came, each legislator was escorted to the banquet hall in a hotel and seated in a round table. Every other chair in that table was occupied by an autistic child with one of their parents seated beside them. That night the legislators learned from first-hand experience some of the difficulties in raising and educating autistic children. The dinner resulted in a fundraising program that established a network of clinics around the state devoted to the diagnosis and treatment of autistic children as well as for the training of parents and child care professionals.
Carmen Boyden Pingree was the parent of a child with autism living in Salt Lake City, Utah. In the 1970’s she spearheaded the movement to establish a local chapter for the Autism Society of America in Salt Lake City and to provide affected children with the special education that they needed. She married John Pingree and had five children with him. One of them, Brian, was diagnosed with autism. Like many other parents. Carmen decided to have a second opinion and took him, to whom she considered a world expert, Dr. Ed Ritvo from UCLA. Out of this initial meeting a plan was forged to help Brian and examine the possibility of using SLC to perform epidemiological research. Carmen who had graduated from the University of Utah with a bachelor’s degree in History and Special Education ultimately made this collaborative effort her Master’s thesis.
Carmen invited Ed Ritvo and his team to SLC and provided meetings with doctors at the University of Utah who were interested in autism. The headquarters for this research enterprise was Carmen’s living room. Utah provided the ideal geography for an epidemiological study to canvass the whole city. Eighty percent of inhabitants live in a valley corridor about 100 miles long and 50 miles across at its widest. Furthermore, Carmen’s husband, worked for the Utah Transit Authority where he ultimately rose to become the Director. It soon became Carmen’s mission in life to identify every possible individual with a diagnosis of autism in SLC.
Some of the major achievements of the University of Utah-UCLA were the object of a previous blog (see: http://bit.ly/1E6JuBO ). Her hard work was recognized by other academic entities wishing to pursue research in autism. Ultimately Carmen became a consultant for the Autism Genetic Studies for UCLA, Stanford University, Utah State University, and the University of Utah Autism Research Program.
Carmen Boyden Pingree serves as President of the Autism Society of Utah and as a Trustee of Intermountain Healthcare. She has also served on the boards of several University of Utah organizations, including KUED TV, Red Butte Gardens, the Alumni Board, the Lowell Bennion Community Service Center, and the College of Education. She was the Chair of the Primary Children’s Medical Center Board of Trustees. In 2004, Carmen was the recipient of the University’s highest alumni honor, the Distinguished Alumnus/a Award. At graduation in 2007, she was presented with an Honorary Doctorate in Education.
Carmen’s dream about funding a pre-school for children with autism became a reality in 1980. The program is administered through Valley Mental Health and provides many services for the families as well as the autistic children. In November of 2002, a new building for the program opened near campus and was named the Carmen B. Pingree Center for Children with Autism. The center has classes for children with autism spanning preschool through elementary school. The Carmen B. Pingree School for Children with Autism also works in partnership with the Autism Research Program at the University of Utah Medical Center.
The Pingree family is truly spectacular. John Pingree currently works for the Semnani Foundation, which finds and funds projects that serve women and children throughout the world. According to their web site, the mission of the Semnani Family Foundation is to find creative and effective ways of serving the needs of marginal and vulnerable communities around the world, particularly those whose survival and security is at grave risk or immediate danger due to forces and factors beyond their control. Whether it is helping communities recover from disease, famine, earthquake or war, or promoting research, educational and civic initiatives, we focus our giving where we can make the most difference.
Carmen B. Pingree an exemplar of mom power
Eric Schopler was one of my favorite researchers. Eric was the US editor of the Journal of Autism (Michael Rutter was the European editor. I had many conversations with Eric in the early 1990’s. My daughter (PPD/NOS) and his grandchild (Cerebral Palsy) has similar traumatic birth injuries. Very compassionate man and he then invited me to publish Letters to the Editor which he personally edited that were published. Very much like your own invites to publish articles in your OA-Autism. You are both of my favorites.
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Another parent who has made a huge difference is Dame Stephanie Shirley. She was a Jewish refugee from Nazi Germany who arrived in the UK at the age of five. and built a huge software company in the UK in the 1960’s. She was the mother of a profoundly autistic son who regressed and never spoke after two and a half years of age and died after an epileptic seizure. She has spent over 70 million dollars in establishing the first school for autistic children in the UK and funds medical research in the UK. A wonderful and charming lady woman who gave a marvelous TEDS talk recently:
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