Sunday, May 31, 2009

A Massachusetts mother worries about the future for her adult son with autism when services stop

From the Amherst Bulletin in Massachusetts:

Two days every week, Peter Aronson (pictured) goes from school to Brookfield Farm in South Amherst, where the 21-year-old has learned to use a shovel to load a wheelbarrow with woodchips and then to place these woodchips between the rows of crops growing in the field.

While it may not seem like challenging work, Peter's mother, Naomi Dratfield (pictured), sees this as one of the essential skills for her autistic son to master before he turns 22.

When he celebrates his birthday in September and is mandated to leave the system that serves autistic children, Dratfield said she fears this will result in fewer opportunities for Peter, who, like other adults with autism, may be confined to living in a group home and being part of sheltered workshops.

"At 22, a child with Pete's level of needs goes from school services to adult services," Dratfield said. "Options for people like my son become extremely limited and narrow."

This is unfortunate, she said, because people with disabilities can feed off the anxieties of others, and it is also the opposite of what's being encouraged when they are younger.

"We've worked hard on integrating the children into the schools," Dratfield said. "Now comes adulthood, and there are no options for them."

With this in mind, Dratfield is working with an organization called the SAGE (Special Adults Greener Earth) Crossing Foundation in an effort to launch what she describes as an intentional farmstead community, where both able and disabled individuals would live and work together.

Dratfield will be speaking about this vision as part of the "Options for Adults with Autism" benefit concert Friday at 7 p.m. at the Unitarian Universalist Society, 121 North Pleasant St., in which her daughter, Molly Aronson, a University of Massachusetts cello performance major, along with Lillian Buss Pearson, a teacher and accompanist, will be the featured performers.

The beneficiaries of the concert are SAGE Crossing and the Polus Center, both of which are involved in establishing innovative programs for adults with developmental disabilities.

"This is a pioneering fundraising event," Dratfield said. "We want to create awareness that we've got to do something, and do something now."

The model of an intentional farmstead community Dratfield envisions would help bring more meaning to her son's life and have a guiding philosophy that each person, no matter the capabilities, is highly valued.

"That's my ultimate goal for my son," Dratfield said.

In this setting, these autistic adults could feel they are doing something for their own community, as well as the larger community.

Dratfield said she has seen similar ventures in action at Bittersweet Farms in Whitehouse, Ohio, where people with and without disabilities live in mutually beneficial relationships, and at Camphill Village in Copake, N.Y., where an intentional community for adults with disabilities, co-workers and children run a farm and bakery and do woodworking and arts projects.

Sites for the Camphill movement, founded by Rudolf Steiner, are common in Europe, though it doesn't necessarily offer the one-on-one assistance her son, and others with autism, would need.

Dratfield, who works professionally as an occupational therapist, said being at a farm allows Peter to have a varying routine each day.

It also brings him closer to nature and animals, though when he first started working at the farm he didn't like the free-range chickens that wandered the property.

Peter first started doing similar physical work at the Hampshire College Farm before coming to Brookfield, which is only three miles from his home.

On a recent afternoon, Dratfield helped her son with his work, repeatedly shouting encouragement to him. "Let's go, lovey! That's a boy!"

The challenges for Peter doing his job are obvious, as he can be easily distracted. For instance, instead of shoveling the woodchips, he decides to break several large twigs and place them in compost piles. But Peter also shows ingenuity, like when he can't easily turn the wheelbarrow around without hitting the crops, he instead navigates the wheelbarrow backwards.

With an increasing population of children diagnosed with autism, about 1 in every 150 births nationwide, and a corresponding rise in the number of autistic grown-ups, more parents are looking at new concepts, rather than the standard templates. "We're working on old models, really old models," Dratfield said.

Dratfield said the new concepts are needed from both a social standpoint of providing better lives, as well as an economic standpoint that states can't easily afford the costs associated with treating adults with autism.

She points to an editorial published last month in the Washington Post, written by Linda Davis, a member of SAGE Crossing, noting that assisting adults with autism will cost the nation $27 billion over the next 15 years.

During Autism Spectrum Awareness Day last year, state Department of Developmental Services Commissioner Elin Howe spoke of the importance of addressing the transition from special education to an adult service system.

"Ultimately, we will need to think creatively about how to serve those children as they move into adulthood, as well as serving adults who are already living in our communities," Howe said.

Howe could not be reached for comment.

Molly Aronson said the concert will feature both solo and shared pieces of works of Haydn, Hindemith, Chopin and Brahms. "I need to give back to my brother because he's given a lot to me," Aronson said. "It's a way to give back doing what I do best."

The concert is free, but those who attend are encouraged to make donations.