By Bill Forry
Managing Editor

Ten years ago, when Norfolk Street's Deborah and Clayton Pressley were told that their handsome five-year-old son Garrett suffers from Autism, the couple felt like they were being handed a "death sentence."

Neither she or her husband, a Boston Police sergeant with 27 years on the job, had any experience with the increasingly common brain disorder and felt obliged to "knock down doors" to find answers to tough questions that no one seemed ready to give them about their son's future.

"I thought we were one in a million. I thought to myself, 'My God, We're out here and we're by ourselves,'" recalls Deborah, an educator who work's for the state's Department of Education.

Today, Deborah and Clayton know they're far from alone. In fact, they are leaders in a growing network of families- all with a similar story- who are laboring to make Autism a priority for state policy makers and educators.

Deborah, who has served as board president of the six-year old Boston Families for Autism, Inc., is now heading up the group's outreach efforts. The organization, which counts about 250 families as members, offers counseling for families on how to tap into some of the resources that are available to stricken families and points parents towards doctors, therapists and schools that exceed in helping Autistic families.

Boston Families for Autism also offers after-school programming for 6 to 12 year-old children at a program based in Roslindale. Many of the participants come from city neighborhoods, but since the group is the only one of its kind in the Boston area, it is attracting suburbanites as well. Teachers use yoga, swimming and other activities to help keep autistic kids engaged and active, in a safe and supportive environment.

For kids with autism- and their caregivers- that's not always an easy task. The condition, which affects boys more than girls, seems to be impacting a larger and larger group of people nationwide. There are several different types of autism, all with a wide range of severity. Some children have a milder disability and, while they exhibit unusual behavior at times, are considered "high-performing" and can lead normal lives as adults. At the other end of the spectrum, some autistic children need around-the-clock supervision and have severe speech and behavioral disabilities.

Now 14 and growing tall, Garrett Pressley is somewhere in the middle. Energetic and happy, Garrett bounds into the Presley's neat Norfolk Street home each day at 5 p.m., fresh off a schoolbus that brings him to his Kenmore Square private school, Kids Are People, each weekday. There, Garrett is part of an integrated school community, where kids with similar disabilities learn alongside other "normal" kids. The Pressley's say the school, which Garrett has attended now for seven years, has done wonders for their family.

"Garrett's successful because he's been included from day one," says his dad, Clayton, whose police work is focused in Dorchester's Uphams Corner. "We have a structured situation with Garrett and it started from day one with Deborah. She took the kids everywhere and never excluded Garrett from the malls or church or the movies.

"And, he's challenged himself a lot too," says Clayton.

More and more, the Boston Families for Autism are using their burgeoning numbers to challenge the state's political powers-that-be. The group lobbied successfully this year to convince lawmakers to fund a first-ever Autism Unit within the state's Department of Mental Retardation. The victory, Deborah says, is progress, but the group is hoping that state and city leaders will go further. More funding is needed, she says, not only for her organization, but for schools and community centers across the Commonwealth, which she says lack proper resources for Autistic kids.

"Our goal is to establish a stronger relationship with city councillors and state lawmakers because we are only a baby step closer to meeting these needs," says Deborah. "We're helping (our families) to become politically astute. Parents of autistic children, whether they like it or not, have to step out of their comfort zone and tell these political leaders what we need."

Following her own advice, Deborah recently took her concerns about the lack of local programming at neighborhood community centers to her city councilman, Charles Yancey. Deborah hopes that through her group's advocacy, a teen program - for young people who are disabled as well as those who aren't- can begin at the new Mildred Avenue facility just down the street from her home.

This weekend, Boston Families for Autism will hold its sixth annual Walk and Family Festival at Franklin Park. The effort is the group's main fundraiser for the year, but it's also aimed at reaching out to other families, many of whom Deborah and Clayton worry, feel as isolated as they once did

Most of all, parents of autistic children, Deborah says, need to know that they're not alone- and they're not to blame for the challenge.

"We're educated people who had great upbringing, we're not economically disadvantaged. I did all the things I was supposed to do to be ready to have a child," says Deborah. "It's a lot for a parent to take. I know parents who don't take their kids out at all. But, we need access. Physical activity is what they need the most."

Minutes later, Deborah checks herself.

"Hope. That's what our families need the most. Hope and a lot of faith."

Boston Families for Autism, Inc. (BFA) will hold its sixth annual Walk for Autism at Franklin Park on Saturday, September 18, from 10 a.m. - 4 p.m. A rain date is set for Sunday. The Walk is five miles starting at Circuit Street by the Shattuck Hospital and walking around the golf course. If you would like to walk, be an individual or corporate sponsor or make a donation, you may contact Deborah Smith-Pressley at 617-216-1676 or 617-327-9486.