WALLINGFORD — Facing an influx of about a half million youth with autism spectrum disorder across the country turning 18, parents, legislators, and social service agencies are seeking to provide the tools needed for them to have a successful transition to adulthood.
In 2000, one in 150 children in the United States were identified as having autism spectrum disorder, according to U.S. Census statistics. That number has now increased to one in every 48 children.
Leslie M. Simoes, executive director of Autism Services and Resources Connecticut, described the situation as “a crisis across the country,” with the health and social service system not equipped to deal with their needs.
Seeking advice and an understanding community several hundred parents and advocates assembled at Ashlar Village Saturday morning for an autism transition forum run by Autism Services and Resources Connecticut, which is located in Wallingford.
Attorney Jay Kearns addressed some of the legal issues adults with autism face, including guardianship, power of attorney, and other decision making mechanisms. Topics like planning for housing after high school, the transitioning of those with challenging behaviors, and autism and employment were discussed in separate sessions.
State Rep. Cathy Abercrombie, D-Meriden, told the group that an important part of her work this legislative session will be shoring up the system. While there is always work to be done, Abercrombie believes that the state is headed in the right direction.
“We are on the right track with the early intervention part, but we haven’t done enough for young adults,” Abercrombie said.
She plans to put forth several bills addressing autism issues, including one which would lower the age transition services are available from 16 to 14.
“We want to give students an opportunity to be successful in the future,” Abercrombie said.
Abercrombie would also like to offer businesses who hire young people with autism a tax credit to encourage their employment and subsidize some of the additional resources to make the relationship a success.
Families address the transition to adulthood in a variety of ways; the fact that there is no one size fits all approach was a mantra throughout the morning.
Sue Salters spoke of the struggles her son faced while transitioning to adulthood over two decades ago. He was diagnosed with autism as a sophomore.
“My world fell apart. I wasn’t expecting my child to stay with me for most of his life,” Salters said.
She and her family fought for services, pushed for Social Security benefits, and took every step necessary to achieve as much freedom for her son as possible. He now drives and has a job.
“He’s grown so much. He blossomed as soon as he got out on his own,” Salters said.
Andrew Aroboe, a staffer at Autism Families Connecticut, spoke of the challenges of his own transition to adulthood. He encountered a world not necessarily prepared or amenable to dealing with his differences. The struggles with autism throughout his childhood bred in him a defeatist attitude it took years to combat.
“My problem was I didn't have a lot of major dreams. I wasn’t thinking for myself,” Aroboe said.
Yana Razumny, co-chair of the Autism Advisory Council, began her transition work her junior year of high school. It was a difficult time for her. She was bullied and her social skills were lacking. She was “masking” – an effort to hide her autism from her peers.
“I decided I was not going hide who I am,” she said.
She was concerned about the limited employment options that appeared to be available to her at the time – bagging groceries wasn’t going to be enough. Through hard work and a lot of intervention, Razumny graduated from Central Connecticut State University, and has a job with the Department of Developmental Services as a self-advocate coordinator. She aspires to be a social worker and perhaps one day the head of the autism division at DDS.
“I’m not yet done in my journey,” she said.
Darlene Borre, the mother of a 17-year-old with autism, offered parents three tidbits of advice: always keep trying new things to help your loved one, involve the entire community in those efforts, and always make sure that you have cheerleaders on your side.
“People want to help out and do the right thing,” she said.
For example, Borre helped set up a club at her son’s school where he and neurotypical kids would be able to work together on business related projects. He gets the opportunity to have exposure to employment related skills and autism becomes an integral part of the community conversation.
“We have the highest highs and the lowest lows,” Borre said, “and we want to surround ourselves with people who understand that.”