A life dedicated to being an autism advocate
Sullivan is retiring at the end of this month from a career that has taken her across the country and around the world.
"It has been an interesting, engaging and challenging career," she said. "When I first began, people did not know what autism was. I would tell someone I had an autistic child, and they would get it confused with 'artistic.' Now just about everyone knows what the term means."
Sullivan's son, Joseph, was diagnosed with autism in Lake Charles just before he turned three.
"We were lucky to get a proper diagnosis then," she said. "There was a young child psychologist that came to Lake Charles once a month from Beaumont. I had noticed a little odd behavior in Joseph and knew that something was different with him, so we had someone see him. I had heard the term autism in grad school, but did not know what it meant."
The family moved to Albany, N.Y., where Sullivan's career as an advocate and lobbyist began.
Two others physicians in Albany made the same diagnosis.
"Back then, physicians were not that familiar with autism, but both the physician and child psychologist who saw Joseph in New York had worked with Leo Kanner, the man who had coined the term autism," Sullivan said.
Her next step was to find out what to do. How was Joseph going to be able to go to school?
She said she organized a group of parents and "because of us, New York became the first state to legislate that children of school age in mental institutions must be educated. That was the first legislative work we did, then we began working to get the kids in school, and began making progress."
The Sullivans soon moved to Huntington, W.Va., where she started a local and state society and worked for laws mandating education for the mentally disabled.
In 1974, West Virginia became the first state to specifically include autism in its mandatory education laws with the encouragement of the West Virginia Society for Autistic Children. The West Virginia law preceded the federal Individuals with Disabilities Education Act in 1975. That act guaranteed a free and appropriate education for all children with disabilities.
"I became a lobbyist, organized parents and was able to help get money for two studies," Sullivan said. "The first was an analysis of what was being done in education for children with autism. I applied for another grant on a study of services for all ages, so that something could be done once kids with autism finished school.
"As a result of the study, we made 28 recommendations to the state government. I was looking at that list of recommendations not too long ago, and we have accomplished every one of them here in the Huntington area."
The recommendations were not acted on immediately.
"When I saw that no one was going to do what was in the recommendations, I created the Autism Services Center (in 1979), which set out to do what needed to be done," she said.
Her son was 15 by the time he had a legal right to an education.
"Luckily, by the time we got to Huntington, there was already an autism classroom set up. It was one of the first in the country," she said.
Joseph attended middle school and high schools in Huntington.
"We had to fight to get him in, but he had a wonderful teacher and learned so much there," Sullivan said. "Each step along the way, the agency would work to provide services that were not provided by the state government then."
The advances advocated by the agency also offered a respite for the parents of autistic children.
"Just being able to have someone take the person with autism out of the house for a while is a big benefit to the parents," Sullivan said. "Another thing we did was train the parents about what their rights were, what services were out there."
Her advocacy work in West Virginia consisted from consulting and doing some writing from her home. Then, the state asked her to assist with an 11-year-old autistic girl from Huntington.
"I drew out a plan and found some staff to help with her and asked (the state) to give me the money, and they did," she said. "They called with a few more, and we found help. It grew from there."
The Autism Services Center now has 13 homes with one-one-one staff around the clock, serving 280 people of all ages. About a third of them have autism.
"We provide services from diagnosis to death," Sullivan said. "Our clients live three to a house in nice homes in nice neighborhoods. They all have jobs and a job coach goes with them. The ones who are school age attend school. It is remarkable to see the progress they make."
Copyright 2007 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
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