Ruth Christ Sullivan stands as a testimony as to how much a person can achieve on behalf of their children. Without a doubt Ruth is a historical figure within the grassroots movement of autism. The usual adjectives when describing her are tenacious, determined and inspiring.
Ruth’s son, Joseph, displayed behavioral abnormalities early on in his life. As any other parent would do Ruth looked for medical assistance but disappointingly found none. Multiple physicians said Joseph had autism and denied his ability to benefit from any medical treatment. Over and over again Ruth heard the customary peremptory expression, “there is nothing we can do”. Hoping to make a difference, she decided to establish a society for autistic individuals where she lived in Albany, New York. Their first meeting was the same day the astronauts landed on the moon (July 20, 1969). From Albany Ruth moved to West Virginia along with her husband and seven children. At the time Joseph was only 9 years old. It soon became clear to her that one of the pressing needs her son and others would have was services for when they became adults. Several decades ago she started advocating for entitlement issues of autistic adults. While in Huntington, West Virginia she founded, and became the executive director, of the Autism Services Center. She also founded the National Association of Residential Providers for Adults with Autism (NARPAA). “You can’t leave them unoccupied at home”, she said at the 2014 Autism Society of America annual meeting.
While in West Virginia she started lobbying from the government for better autism related services. She enticed the press to start writing stories about children with autism: good-looking kids that behaved oddly and whose preoccupations provided for interesting stories. Her motto was “romance the press” and attract attention. Some of her accomplishments during the 1970’s included (see http://www.huntingtonquarterly.com/articles/issue79/sullivan.php):
• Being the first lobbyist to bring autism issues to the state legislatures of New York and West Virginia.
• Being the first lobbyist for autism issues at the United States Congress and being instrumental in the passage of the national Individuals with Disabilities Education Act (IDEA) in 1975, guaranteeing free education to all children with disabilities, including autism.
• She operated the National Autism Hotline out of her home for five years.
In order to be taken seriously, Ruth decided to obtain a PhD. Despite being a mother of seven children, she commuted every day for 6 years to Ohio State University. She received her PhD at the age of 60.
It is not surprising that Ruth was the first elected president of the Autism Society and serves as an honorary member of the board of directors. Many of the state and local chapters of the Autism Society of America were personally established by her.
Dr. Sullivan has lectured throughout the United States as well as internationally. She has published 5 books, many book chapters and 65 peer reviewed articles. For many years Ruth was a columnist for the Journal of Autism and Developmental Disabilities. She was a consultant for the movie Rain Man which non-coincidentally premiered in her hometown of Huntington, West Virginia.
Ruth is still active at the age of 90. I recently caught up with her at the Autism Society of America Annual Meeting. Sharp as ever, she wanted to know the latest about research, especially potential treatments, in autism. Ruth is an incredible person and human being. She inspires those around her with her example.
Figure: One of my favorite persons in this world, Ruth Sullivan. We have been blessed with her life and achievements.
Addendum: I received a note from Margaret Creedon (8/4/14) who read my blog. She called Ruth, ‘One of the world’s favorites.» I thought the statement adequately described her.
Dr. Sullivan’s column in the Journal of Autism and Developmental Disorders was called “Parents Speak”. She reported various clues to autism she’d heard from parents and pediatricians, like other conditions often found in these children (e.g. rheumatoid arthritis). Some of the most intriguing reports were of autistic children who became almost normal during infectious fever: “Though there is practically no mention of the high fever/improved behavior phenomenon in the entire autism literature, every knowledgeable person – both parent and professional – I approached for information knew of it.” (JADD 1980;10:231-241). An outbreak of respiratory infection in a Bellevue Hospital nursery showed the phenomenon could occur in a group of autistic children. Dr. Sullivan concluded: “[T]he change in the autistic child’s behavior is more than quiet – it is a lucid calmness, as though he suddenly has a better understanding of what is happening around him.”
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That was an important contribution on Dr. Sullivan. Thank you for the comment.
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