Public Health and Autism Advocate
Taking care of one of her children led to a different career focus, which ultimately helped children across the world to lead better educated and happier lives.
FAMILY BACKGROUND
RS was born in Texas. Her father worked in oil refineries, then turned to farming after the family moved to Louisiana. Her mother worked in a department store.
EDUCATION – PART ONE
After graduating from a hospital’s nursing program, RS served in the Army Nurse Corps, treating soldiers during World War II. When the war ended, she attended a teacher’s college, earning her Bachelor’s and Master’s degrees in public health.
CAREER COMMENCES
While moving their home several times to accommodate her husband’s changing teaching jobs, RS worked part-time as a nurse – through giving birth to five (of eventually 7) children.
FAMILY CHALLENGE LEADS TO NEW CAREER FOCUS
When her fifth child was born, RS soon noticed that he started speaking early but began to withdraw at 18 months. By his second birthday, “He could say only 8 words. He would indicate what he wanted by grunts, guiding our hands to what he wanted.”
When her son was diagnosed at age three with ‘autism” RS asked the doctor, “What is that?” The doctor responded (in 1963), “He will always be odd.” But, RS recalled, the doctor couldn’t offer anything else.
EDUCATION – PART TWO
Initially focused only on helping to understand her own son, RS returned to graduate school and earned a Ph. D in special education, speech pathology and psychology from a well-respected university, which gave her not only important knowledge about her son’s condition but eventually, also greater standing with the people she would later lobby on behalf of children with autism.
RESEARCH BUSTS A MYTH
Very disturbing to RS was a prevailing psychological theory that ‘cold and distant parents’ – referred to as “refrigerator mothers” – were responsible for causing their children’s autism.
“I knew it wasn’t true,” said RS. “I didn’t love Joseph any less than the others. I treated him differently because he didn’t behave like the others. I’m the oldest of seven. I have seven children. I was a nurse. I knew something about children.”
Research led RS to read the book “Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior” (1964) by Bernard Rimland, a psychologist with an autistic son. Rimland rebutted the claim that neglectful parents caused autism in their children, arguing that autism was a result of genetics and possibly environmental factors.
RS contacted Dr. Rimland about starting a national network of parents that would receive the latest research about autism, which led to the two of them and other interested parents to found the National Society for Autistic Children (now the “Autism Society”).
CHALLENGE – EARLY RESISTANCE TO SPECIAL EDUCATION
The local School Board where RS lived declined to provide education for autistic children. RS went to the School Board’s meeting with a prepared statement in support of providing special education. Her advocacy was picked up by local newspapers. For the next six weeks, RS was on the phone daily, trying to persuade the Board to set up a special class. Finally, the Board relented and with the help of some dedicated teachers, 12 local children began attending school.
RS lobbied for the passage in 1975 of what came to be called the “Individuals with Disabilities Education Act”, which required public schools that received federal money to provide equal access to children with disabilities. When the law was amended 15 years later, RS helped write the language to include autistic children.
She also became a technical advisor to the movie “Rain Man” which led to actor Dustin Hoffman meeting both RS and her son, Joseph. Mr. Hoffman thanked them both from the stage when he received an Oscar for his performance as an autistic adult, after closely studying autistic children and adults for several months, to prepare for his acting role.
CAREER SATISFACTION
“Providing guidance to families nationally was obviously spectacular,” said the executive director of the Autism Research Institute, “But RS was also one of the first people to talk about medical comorbidities associated with autism, like seizures, sleep problems and gastrointestinal problems. And she was one of the first to point to the importance of providing services to adults with autism.”
Another colleague noted, “The philosophy that RS worked so hard to instill in those of us employed professionally as advocates for children with autism, was to have a parent’s perspective, to think as if this is our child receiving these services. She’d say that the difference between good and excellent services is in the details and, like a good coach, RS had an eye for details.”
RS’ influence was international. She received letters from parents around the world in search of solutions for their children, and she traveled widely to speak about autism. “She was invited to a conference on autism in Argentina in the 1990s,” her daughter said. “At the time, Argentina was in the grips of the ‘refrigerator mother’ thing, and she got together with parents and told them they needed to start their own group. So, she’s the godmother of an autism parents’ group in Argentina.”
One of RS’ six other children recalls that “Our dinners were often interrupted by hysterical parents calling and my mother would spend the evenings talking to desperate parents from around the world.”
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This career story is based on an obituary written by Richard Sandomir, published by The New York Times on 10/1/21.
