Adult Autism -- Rain Man, Revisited

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Adult Autism -- Rain Man, Revisited

By King

The fight to find a place in the world for autistic adults has long

been waged by the mother of the man made famous by Hoffman in Rain Man 20

years ago.

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 ph Sullivan, one of the real-life models for

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 ph, 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 ph 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 ph 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.

ph 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.

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