Friends of Autistics Lobby Town Hall, Greenwich Post, 4/16/99
by Peter Moore

According to her mother, Brita, 27-year-old Vanessa Darany is "lucky" she is mentally retarded.

Lucky because she receives services for her disability, Brita explains. More specifically, Vanessa is mentally retarded and autistic, however, she receives disability services because of her mental retardation, not her autism. And, Brita adds, Vanessa requires additional services for her autism, which she is not receiving in her current residence placement.

Vanessa, who lives the Lower Fairfield Center, a state institution in Norwalk, attending last Thursday's gathering at Greenwich Town Hall of Friends of Autistic People. a group of parents dedicated to aiding autistic adults once they reach the age of 21.

Autism is a neurological illness, the symptoms of which often appear in the first three years of a child's life. The disorder affects one's communication skills, thought process, social interaction, and reasoning, and is sometimes, but not always, compounded by mental retardation. FAP claims that approximately 500,000 Americans have been diagnosed with autism and that it is the third-most common developmental disability, ranking above Down Syndrome.

"I work so hard to get the group off the ground," said Brita, FAP's president. And apparently her work has proved somewhat successful, attracting the attention of several parents, a local cable television station, and a member of the Board of Selectmen.

The meeting's agenda included a speech by Larry Wood, the executive director of Ben Haven, a boarding school for autistic children up to the age of 21 and an open forum for comments and questions by those in attendance. Several parents of autistic children voiced concern for lack of services available to their children once they turned 21.

One parent described a state disability hearing for her child where she was told by hearing officer that her child could live independently. She says her son, meanwhile, sat with her, while making his hands "talk" to each other.

"I sat there with my child who sat there talking to his hand," the woman described. "I said, 'You're telling me this kid's going to live independently?' [The hearing officer said] 'You're right, there's nothing I can do. Here's a Connecticut statute -- go sue.'"

As sounds Vanessa was making at the beginning of the meeting became increasingly louder and more disturbing, a waiting staff member, presumably from the Lower Fairfield Center, escorted her outside the Town Hall conference room. She did not return. Brita Darany cited the incident as an example of her daughter not currently receiving proper care, though not through the fault of the staff member.

"There was a lovely staff person with her, but she had no idea to deal with Vanessa," Brita said.

Open to parents with autistic children of all ages, FAP claims that its membership has tripled in six months. Recently, the group produced a television special for a local cable channel on the needs of autistic adults.

Tom Leyden, a young Stamford resident with Pervasive Development Disorder and Aspberger's Syndrome, also attended the event after being contacted by Brita Darany. Tom said he is a high-functioning case of a developmental disability, but, like others, he still needs services from the state.

For more information on Friends of Autistic People, contact Brita Darany at 661-8510 or email her at bridaranyi@aol.com.