In the News

As reported by the Stamford Advocate, July 16, 2007.

The Older Autistic

What Happens When They Grow Up?

By Beth Cooney

Vanessa Darany was born with autism before it was declared a national epidemic. Before anyone asked the question, her mother was asking anyone who would listen: "What happens when these kids grow up?"

At first, Vanessa's parents, Brita and Tibor Darany of Greenwich, focused on the most immediate needs of their only child, who is now in her early 30s.

"She was about three when we found out and then, no one knew much about what her future could be," says her mother. "What was on our minds was simply, 'How do we help her have the best possible life?' "

Later, when it became clear that Vanessa had a form of autism that was profound - leaving her unable to really speak, acutely sensitive to her environment and prone to fits - her parents considered the long-term questions such as, "What happens to her when we get old?"

In Vanessa's case, the answer has been a source of tremendous frustration for her mother, the founder of Greenwich-based Friends of Autistic People. Darany has made FAP's primary mission raising enough money to build The Farm, a residential community for mature autistics that she hopes will someday be located in the northern reaches of Fairfield County or the Danbury area. Still in the development and fundraising stage, Darany hopes The Farm will become a model for adult autistic communities in Connecticut.

The proposal comes at a critical time, as the state begins to recognize the growing need for their care and is funding some small, pilot projects in the New Haven area.

Darany applauds those efforts, but says more is needed. Hence, her passion for creating The Farm, a place where she envisions closely supervised adult autistics can garden, raise small animals, maybe learn crafts, cooking and other life skills. "We are still looking for land and this is going to be a tremendous effort," Darany says. "But you have to push for what you need and we need this."

Although Vanessa now lives in a group home in Trumbull - a benefit she receives from the state because she has the dual diagnosis of mental retardation - her parents long struggled to find a suitable place for her to live. Her tantrums, which often involve kicking, screaming and banging objects, made even the pretense of a normal home life impossible. Even when she was young, Darany says, it was hard for the family to keep a baby sitter who could provide a few hours respite.

"And we are not getting younger," says Darany, explaining because she and her husband are European immigrants, they have no close relatives nearby. "We wanted her to be in a place where she could live out her life. We wanted the people who help care for her to understand her, love her and know her, the way that we do."

Vanessa spent her early years in a boarding school, paid for by the Greenwich public schools, but left in her early 20s when the mandated funding stopped.

"She eventually went to a group home for the mentally retarded in Greenwich, but was asked to leave," Darany says. "It was a terrible experience for her, for us. No one there really understood autism. She was so different from the other clients. No one there was trained to deal with or comprehend a person who doesn't speak. She didn't belong there, we knew that, but at the time there was nowhere else for her to go where she could be reasonably close to us."

Finally, a place was secured for her in Ascolese House, a small group home in Trumbull. Vanessa lives there with six other autistic adults, and through FAP grants, the staff has received extra training to support the residents' communication challenges. "We have had to push very hard to get them what they need," she says.

The only reason Vanessa can live there, her mother says, is because of her dual diagnosis of mental retardation. If her intellect was assessed as normal, as it sometimes is with people on the autistic spectrum, "She would be out of luck and that is wrong," her mother says. "For a lot of autistic adults, there is a need for support, a need for services beyond the age of 21, but there is not help for them. They are sort of cut off and we are trying to change that."

The problem confronts many families, including the extended one of Stamford resident Peggy De La Cruz, a singer who has entertained at FAP's fundraisers for The Farm because the issue is personal. Her young adult nephew, Wayne, is autistic and cannot function without some supervision. "We ask ourselves all the time what is going to happen to him. His father is 66," she says. "There is so much talk these days about the autism rates being off the charts. And I wonder with these numbers, what happens in the next generation. Who is going to take care of them, and I think we need to have that conversation now."

With so much attention being paid to the growing rates of autism - now estimated to impact 1 in 155 children - Darany is trying to steer some attention from the "why" of the epidemic to the future.

"With young (autistic) children, the focus is on early intervention so the kids reach their true potential. And there is all kinds of money being spent on research, which is amazing, wonderful and truly encouraging," says Darany. "I am just trying to get people to focus a little more on what happens on the other end of the spectrum. We haven't been paying enough attention to that. My experience is proof of that, but it still has been very frustrating to divert attention from some of the more prominent autism organizations."

Besides trying to create interest in The Farm, Darany has lobbied state lawmakers to confront the lack of options for older autistics and their families. She credits, among others, Sen. William Nickerson (R-Greenwich), with his support for legislation that calls for the state Department of Mental Retardation to fund a small unit devoted to Autism Spectrum Disorders. Nickerson could not be reached for comment.

In an e-mail response to questions about the state's efforts to assist autistic adults, Joan Barnish, a spokeswoman for the state DMR, referenced recent state legislation that calls for, among other things, an Autism Spectrum Disorders unit and for the DMR to report to the legislature specific recommendations on serving the autistic population by February 2009.

Barnish also cited a pilot autism program in the New Haven area that serves 26 adults. "(They) are currently enrolled in the program and DMR has contracted with The University of Connecticut Center on Aging for an outcome study of the pilot," she wrote. "Pilot participants are receiving supports to help them with their individual needs and to actively participate in community activities. Participants are experiencing some very positive changes in their lives and several families have expressed satisfaction with the initial work of the pilot."

Darany says she is beginning to feel like some progress is being made. "Ten years ago, I couldn't get my phone calls returned," she says. "Today, I see a future for Vanessa and all these other kids."