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Mary Clancy is not a lawmaker or a policy wonk or a professor. So when the office of Congressman Mike Doyle, a Pennsylvania Democrat, called last week and asked if she would take the train to Washington, D.C. from her home in New York to speak in front of members of the Congress, she was more than a little nervous.
“I haven’t done something like this since ninth grade!” she said. “I never learned how to speak in public.”
But what Clancy had to share with the lawmakers was a lifetime of learning.
Her son Eric Sadowsky, 23, was diagnosed with an Autism Spectrum Disorder when he was a small child. Clancy and her husband Richard have spent nearly two decades advocating for their son — making hundreds of phone calls, finding the right schools and programs for him, teaching him and helping him become the confident young man he is now.
Clancy had been an artist but she stopped working to take care of Eric. Now she was being asked to talk about the transition her family faced when Eric turned 21.
“They asked me to talk about what we’re doing with Eric that is working,” Clancy emphasized.
The invitation to speak on Capitol Hill on Thursday came about through a chain of events that also involved NBC News.
Doyle, Rep. Chris Smith, R-N.J., and the Congressional Coalition for Autism Research and Education had already been planning to host a briefing on the transition faced by young adults with autism. But then they saw Clancy and her son featured in reports on the Today Show and NBCNews.com and a full hour of Dateline, called “On the Brink”.
Over three years, Dateline cameras visited the family as Eric turned 21 and “aged out” of the education system. Federal law requires students with disabilities to receive educational services paid for by a local school district up until the age of 21.
At that point, young people graduate and there is no federal or state program that automatically takes over. Many families compare the transition to adulthood to “falling off a cliff.” A recent study by the A.J. Drexel Autism Institute, a research organization, found almost four out of ten autistic young adults were completely disconnected from both work and continued education opportunities.
“I wake up every morning, drenched in sweat and worried about what am I going to do about Eric,” Clancy told Dateline.
The Dateline report caused a flood of reaction online and in social media. NBC News reached out to Doyle’s office after the broadcast to check in and see if there was any congressional action planned to help young adults with autism.
Doyle had seen the report and invited Clancy to speak at the briefing.
Clancy told the briefing on Thursday about the programs Eric now attends, including an art program in New York called Pure Vision Arts, a program run by the Shield Institute, a non-profit organization. Mary told the panel that Eric is thrilled to attend that program for five hours each day.
“The environment is very quiet. They play music. There are small numbers, only 15 to 20 people in the room at a time. It’s full of sunshine. Everyone is working and concentrating. It’s staffed by three art therapists who are all trained in autism and they teach by example, acceptance and support. The artists learn from these mentors and they learn from each other,” Clancy testified.
Eric has learned to use Google maps and navigate the New York City subway on his own, she said. He’s using an ATM card and cell phone. She also talked about the importance of music therapy, psychotherapy and exercise in Eric’s life.
Yoga day, she said with a laugh, is Eric’s favorite day of the week.
“We’re finding that these combinations of programs that we put together, that he is learning, he’s developing. He’s come a long way since high school,” Clancy said. “There is one missing component that is crucial and that’s a social life with friends. He’s way too dependent on the family for his social needs. So that’s something we really are struggling with. It’s not easy to do that. It is a full-time job for me.”
Clancy explained that while they’re now receiving some funding from federal and state sources, “it’s very patchy and it’s a lot to navigate.”
Other panelists who spoke before the autism caucus echoed that sentiment.
Dr. Paul Shattuck, leader of the course outcomes research program at the A.J. Drexel Autism Institute, stressed that young adults with autism continue to need support.
“We believe that people on the autism spectrum are valuable members of our communities. They have roles to play, dreams to pursue. And they have things to contribute,” Shattuck said. “The big challenge is creating opportunities for people to participate and contribute in society and unlock their potential.”
Eric’s father, Richard Sadowsky, told a story about Eric at age 14 when a school suggested that perhaps he could train to work postage meters in an office setting. Eric’s family was convinced he could find something more fulfilling.
“What worked for Eric was the notion that we were not stopping his education,” Richard said about the transition at age 21. “Whether he was formally enrolled in school or not we were going to do something which was comprehensive.”
Eric now selling the artwork he creates at Pure Vision Arts.
“That… is a life,” his dad told lawmakers.
“We here in the congressional autism caucus, we’ve been aware of this issue for a long time,” Doyle told the gathering. “And we really think the federal government has a role to play with autism spectrum disorders. We have a role to make sure that people can become independent and self-sufficient to the extent that they can.”
“Dateline’s 'On the Brink' report really was a compelling case study on the urgent need for such support,” Doyle said. “The hardest part is to get the ball rolling. I think today’s briefing is going to be a good start… Sometimes you just need a push here in Congress.”
Clancy said the hardest question now is “What’s next?” She said many parents are joining forces to try and push for change.
“Right now it’s baby steps. Just getting the word out,” Clancy said.
She said Eric understood that she was going to Washington to talk with policymakers.
“I told him I’m talking to people who work with the President and helping him and all his friends at Pure Vision and people who don’t get to go to Pure Vision when they graduate. They need someplace to go too.”
After her big day on Capitol Hill, Clancy was rushed back to New York.
“I have instructions from Eric to be home by dinner.”