Autism, once thought to affect fewer than five of every 10,000 children, is now diagnosed in one child in 150. New books and articles on the topic appear almost daily. But amid this torrent of coverage, one aspect is curiously absent: What happens to autistic children when they grow up? Nearly all of the funds currently allocated for autism go either to research or services for children, and federal mandates for assistance do not extend to anyone over 21.
"To draw attention to a health cause, you need a poster child," laments Ruth Christ Sullivan, PhD, the first president of the Autism Society of America (ASA) and the mother of Joseph Sullivan, one of the real-life models for Dustin Hoffman's character in 1988's Rain Man. After a lifetime of advocacy for autistic children, 84-year-old Sullivan is now battling to ensure that all adults with autism receive proper care. Two top priorities: providing online classes for those who want to work with autistic people (for more go to www.narpaa.org) and ensuring that autistic adults continue to receive their Medicaid benefits when they move from one state to another.
Sullivan's activism began in 1963, when she was told that Joseph, then 3 and the fifth of her seven children, was autistic. Doctors warned her not to read anything on the topic because it would "only confuse" her. Sullivan ignored that advice, soon discovering why they'd discouraged her: Medical wisdom at the time held that autism was a mental illness caused by "refrigerator mothers," cold, unaffectionate women who failed to bond with their children. Sullivan, along with her English professor husband, rejected this theory. "It made no sense -- I was not a different mother to Joseph than I was to my other six children." So she set about changing those perceptions, founding ASA and eventually becoming the first autism activist to lobby Congress, an effort that culminated in the passage of the landmark Individuals with Disabilities Education Act in 1975, which guaranteed a free public education to all U.S. children, even those with disabilities.
Ironically, Sullivan's most important work began when Joseph was nearly grown. He was 15 when it began to worry her that he depended solely on her for his care. Indeed, most autistic adults live with elderly or otherwise overwhelmed parents. So in 1979 Sullivan founded Autism Services Center (ASC); its aim was to provide comfortable group homes for autistic adults where they could be reasonably content and engaged in life. Today ASC operates 13 such homes in Sullivan's town of Huntington, West Virginia, and it is helping to replicate those facilities in other communities.
Joseph has lived, with two housemates, in one of the Huntington homes for the last 19 years. He holds two part-time jobs and in his spare time exercises at the local YMCA and takes art classes. At 48, he still exhibits the savant-like mathematical abilities dramatized by Hoffman in the film, but struggles with appropriate social behavior. He has few friends outside of staff members, but Sullivan believes he is content. "Not many parents can say that their child is as happy as he or she can possibly be," she says. "I can, and it's a gift."
Originally published in Ladies' Home Journal, May 2008.