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Columbus Woman Refuses To Let Autism Define Her
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More than 50,000 Ohioans are on the autism spectrum. They face many hurdles. One Columbus woman with autism continues to break down barriers along life’s path, inspiring others along the way. WOSU sat down with Ohio Courage Award recipient Sondra Williams and has this profile.
“Why do some with autism feel as if they’re not real people?” Sondra Williams wondered as she gave a speech several years ago. “Some of us see us as fragmented parts and not as a whole individual yet.”
Before Williams, 51, became a public speaker, activist, author, mother and wife, before she met Governor John Kasich who presented her with the Courage Award in 2013, Williams had a disjointed life.
Her childhood thoughts are described as confused. Loud noises and bright lights bothered her. She avoided direct eye contact. And she borrowed lines from movies or books to answer questions.
“So when the psychiatrist or people were asking me questions, if I didn’t know the answer, I would just throw out something, which seemed like disconnected communication or thought process,” Williams recalled. “It was me trying to do my best to respond, but [I] had no clue what to respond with.”
It was the mid-1970s and, despite her telltale signs of autism, doctors misdiagnosed Williams as intellectually impaired with multiple mental health illnesses, including psychosis.
Williams was 13 when she was institutionalized.
“They were mostly looking at autism in boys. So that’s one of the other reasons I believe that I was not correctly diagnosed,” Williams said. “The kinds of treatments they were using for me actually increased my mental health issues in the sense of post-traumatic stress disorder.”
By Williams’ early 20s, her parents wanted to put her in a group home in Richland County where she grew up. Had they followed through, Williams’ life would have been very different, but for unknown reasons they dropped the ball.
“I always joke around that I escaped one institutional setting and joined right into the marriage institution. Not in a bad way. I’m just joking as if all marriages have those ups and downs.”
Marriage didn’t mean Williams’ struggles were over. She continued to grapple with some of the same issues she had as a child only compounded by PTSD and anxiety from years of trauma in a psychiatric hospital.
Everyday life was hard. Sometimes she didn’t recognize her husband if he wasn’t in a familiar setting. And she missed out on a lot with her four children who also are on the autism spectrum.
“I would stand out very noticeably not only to the children but to the parents. And I would hear kids whispering to my daughter, ‘Is your mom crazy? Is she retarded?’ Those kinds of words. And it was very, very painful,” Williams remembered. “So I began to step back because I already felt my kids have enough stigma because of their own disability that I personally didn’t want to stigmatize more for them, thinking her whole family’s crazy.”
But life began to turn for Williams. When she was 38 she finally was diagnosed with autism spectrum disorder.
“They finally found what was different about me, and it truly had a name. It felt like I finally gave birth to whatever this craziness was that was going on in my life.”
And Williams discovered her advocacy voice when her children, one by one, received their own diagnosis.
“I had to learn how to be the best voice for my kids. So the more competency that was built through that advocacy through my kids, the more confident I felt about advocating and speaking out for my own self,” she said.
Williams since has written a book called “Reflections of Self,” and she’s working on a second one. She has coordinated a summer arts and multi-media camp for youth with autism. Her resume also includes service on various local and national autism advocacy boards.
“Sometimes I feel like I give off the persona that I’m braver than I really am,” Williams said. “I feel like always that there’s like this tornado or storm or hurricane about to just brew inside of me all the time because of all the pains and crazy stuff that keeps happening.”
Williams works through it. She moved away from Richland County in 2001 and hasn’t visited. It has been too painful. But she hopes to work through that, too, so she can extend her message of hope.