Ruth Sullivan, a public health nurse who became an influential advocate for autistic children and adults after one of her sons was diagnosed with the disorder in the early 1960s, died on Sept. 16 at a senior living center in Huntington, W.Va. She was 97.
Her daughter Lydia Sullivan said the cause was atrial fibrillation, an abnormal heart rhythm.
For more than 40 years, Dr. Sullivan was a tireless champion for educational and other opportunities for people on the autism spectrum. She was a founder of the Autism Society, a national grass-roots organization, and secured state funding to open the West Virginia Autism Training Center at Marshall University.
She started and ran the Autism Services Center, which provides residential, therapeutic and community services, and for several years offered information and referrals by telephone from her home in Huntington, where she and her husband, William, raised seven children.
“Our dinners were often interrupted by hysterical parents calling,” Lydia Sullivan said in a phone interview, “and my mother would spend the evenings talking to desperate parents from around the world.”
Dr. Sullivan was once that parent desperate for information about autism. When her son Joseph received his diagnosis in 1963, at the age of 3, autism was a mysterious disorder that most pediatricians knew little about. She took Joseph to a doctor in Lake Charles, La., where the family was living at the time, and he quickly recognized that Joseph was autistic.
“I said, ‘What is that?’” she recalled when she was interviewed on a podcast in 2016 by Marc Ellison, the executive director of the Autism Training Center and one of her protégés. “He said he will always be odd. But he couldn’t offer anything else.”
Nearly as disturbing to Dr. Sullivan was a prevailing psychological theory that cold and distant parents — most notably those who were referred to as “refrigerator mothers” — were responsible for causing their children’s autism.
“I knew it wasn’t true,” she said on the podcast. “I didn’t love Joseph any less than the others. I treated him differently because he didn’t behave like the others.” She added: “I’m the oldest of seven. I have seven children. I was a nurse. I knew something about children.”
Research led her 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. He rebutted the claim that neglectful parents caused autism in their children and argued that autism was a result of genetics and possibly environmental factors.
Dr. Sullivan wrote to Dr. Rimland about starting a national network of parents that would receive the latest research about autism. In 1965, the two of them and a group of parents who had also written to Dr. Rimland met at a house in Teaneck, N.J., and founded the National Society for Autistic Children (now the Autism Society), a support group that would have numerous local chapters throughout the country. Dr. Sullivan was elected its president in 1969.
Around that time she was also trying to overcome a local school board’s resistance to providing an education to autistic children like Joseph. She brought a prepared statement to a school board meeting, and local newspapers wrote about her campaign to educate Joseph.
“For almost six weeks I was on the phone every day trying to persuade them to set up a special class,” Dr. Sullivan told The Sunday Gazette-Mail of Charleston, W.Va., in 1972.
“The next week,” she added, “there was a class for Joseph and 12 other children. With the help of some dedicated teachers, they’ve been attending school ever since.”
Dr. Sullivan 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, she helped write the language to include autistic children.
She also became a technical adviser to “Rain Man,” Barry Levinson’s 1988 film about an autistic man (Dustin Hoffman) and his brother (Tom Cruise). To prepare for the role, Mr. Hoffman studied two documentary films featuring Joseph as well as outtakes from one of them, “Portrait of an Autistic Young Man” (1986), which was shown on PBS stations.
“That’s where I met Joe, in a sense,” Mr. Hoffman told The Associated Press in 1988 at a showing of “Rain Man” in Huntington that, at Dr. Sullivan’s request, was a fund-raiser for the Autism Services Center. “I buried myself there for the first two months.”
Joseph’s favorite scene in the film was when Mr. Hoffman’s character, Raymond Babbit, quickly counted spilled toothpicks.
Mr. Hoffman thanked Dr. Sullivan and Joseph from the awards ceremony stage when he accepted the Oscar for best actor. She believed that the film helped broaden the public’s understanding of autism.
Ruth Marie Christ was born on April 20, 1924, in Port Arthur, Texas, 90 miles east of Houston. Her father, Lawrence, worked in oil refineries, then turned to farming after he and his family moved to Mowata, La., when Ruth was very young. Her mother, Ada (Matt) Christ, worked in a department store.
After graduating from the nursing program at Charity Hospital in New Orleans in 1943, Dr. Sullivan served in the Army Nurse Corps, treating soldiers during World War II at Fort Sam Houston in San Antonio (now Joint Base San Antonio).
After the war ended, she moved to Lake Charles for four years, then attended Teachers College at Columbia University on the G.I. Bill. After receiving bachelor’s and master’s degrees in public health, she worked as a nurse in Manhattan. She married William Sullivan, an English professor, in 1952 and accompanied him to teaching posts in Columbia, Mo., Lake Charles and Albany, working part time as a nurse until her fourth child was born, in 1958.
Joseph, her fifth child, was born in 1960. He started speaking early but began to withdraw at 18 months. By his second birthday, Dr. Sullivan wrote in her journal — which was quoted by The Gazette-Mail in 1972 — “he could say only eight words. He would indicate what he wanted by grunts, guiding our hands to what he wanted.”
In 1984, at 60, she earned a Ph.D. in special education, speech pathology and psychology from Ohio University, which gave her greater standing with the people she lobbied.
Her relentless but gentle style of advocacy continued until her retirement in 2007.
“Providing guidance to families nationally was obviously spectacular,” said Stephen Edelson, executive director of the Autism Research Institute. “But she 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.”
Jimmie Beirne, chief executive of the Autism Services Center (the position Dr. Sullivan held from 1979 to 2007), was hired 33 years ago to work part time with Joseph on developing his social skills.
“The philosophy that she worked so hard to instill in us was to have a parent’s perspective, to think as if this is our child receiving these services,” Dr. Beirne said by phone. “She’d say that the difference between good and excellent services is in the details, and, like a good coach, she had an eye for details.”
Today, Joseph lives in a group home run by the Autism Services Center and works at the Autism Training Center.
In addition to Joseph and her daughter Lydia, Dr. Sullivan is survived by her other sons, Larry, Richard and Christopher; her other daughters, Eva Sullivan and Julie Sullivan, who is writing a book about her mother; her sisters, Geraldine Landry, Frances Buckingham and Julie Miller; her brother, Charles; 12 grandchildren; and four great-grandchildren.
Dr. Sullivan’s 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 Julie said by phone. “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.”
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