WEST GREENWICH, R.I. – March 4, 2013 – When Harvard Medical School psychologist Elaine Meyer and her husband Barry Prizant, an autism expert and adjunct professor at Brown University, were hiking in a national park two decades ago, they recognized the healing properties of nature and thought parents of children with autism could benefit from a retreat where they could reflect, learn from each other, and ease the stresses of their lives.
Meyer, an alumna of the University of Rhode Island, knew just the place for such a program: URI’s W. Alton Jones Campus and its Whispering Pines Conference Center, located in the middle of a 2,300-acre forest in West Greenwich. This year marked the 18th year that Meyer and Prizant have organized the retreat with Community Autism Resources, a parent-run family support agency, and by all accounts it has been a great success.
Deb and Jim Belanger of Coventry have attended the two-day program for 15 years and describe it as a safe haven to discuss issues that are difficult to discuss with those who are not facing the same challenges.
“How nice it was to come into a group of non-judgmental people who you don’t have to explain things to, you can be yourself, and you can participate at any level you feel like,” said Jim Belanger. “We have to deal with autism 24/7 and 363 days a year, but here we can discuss it from afar without also having to live with it at the same time.”
Added Deb Belanger, “I still say to this day that it helped preserve our marriage, because it helped us to have a common experience with common people and embrace the autism in a different way.”
According to Prizant, autism is a neurologically-based developmental disability that is diagnosed by documenting problems in social interaction, communication and sensory issues. “A combination of these factors can lead to problematic behaviors or challenging behaviors, which may cause great stress for the family,” he said.
Prizant explained that there has been an “explosion” in the diagnosis of autism in recent years. In the 1980s there were approximately 3 or 4 children per 10,000 diagnosed with autism, while today the number has increased to 1 in 88. While some of that increase is due to a better ability to diagnose the disability, Prizant also believes it is being over-diagnosed.
“Autism is behaviorally defined, not medically diagnosed,” he explained. “Although there appears to be a genetic contribution, you can’t look at specific genes or the brain and see autism. Research has not identified any brain damage or structural differences in the brain of those with autism. It is now believed that the ‘wiring’ functions differently.”
Meyer, associate professor of psychology at the Harvard Medical School and director of the Institute for Professionalism and Ethical Practice at Boston Children’s Hospital, said the success of the retreat is due to its focus on small group discussions, social support, and access to opportunities for growth and healing.
“People are here to learn more than just about autism and their children,” she said. “They’re exploring their own person-hood and parenthood and their family relationships. We have a personal growth and self-care focus. If parents can take care of themselves and nurture themselves, they’ll be able to take care of their families better. This retreat is about self-discovery, about learning to accept yourself.”
This year’s agenda included such sessions as “New to It All,” “Adventures in Adolescence,” “Expressive Arts and Children with ASD”, “Dads Together,” and “The Always Evolving Family.”
“When people come to sessions like this, it changes the quality of their life,” Meyer added. “They come away with ideas and a network of people who understand the situation. We’re not here to fix it all, but we’re all learners and we’re all resources at the same time.”
Henry and Eileen Fiore of Westerly, both graduates of URI, have attended the retreat for four years, and the experience led Henry to present workshops on autism to groups of schoolteachers and administrators, as well as at a national conference of the National Catholic Educational Association. Principal of the St. Pius X School in Westerly, Henry Fiore said he initially didn’t want to attend the retreat, but now he plans to continue attending as long as he can.
“I’ve learned a great deal from the parents whose children are now young adults, about what to expect when our son gets to be that age,” he said. “You sometimes can’t look ahead that far, so when you meet someone with a child that age, you realize there is hope.”
All of the participants rave about how the W. Alton Jones Campus is the ideal setting for the program.
“You can’t just go anywhere and do what we do,” said Barbara Domingue, one of the co-founders of the retreat and the executive director of Community Autism Resources. “When you drive down that long road into campus, you start to feel yourself in a better place. We’re nurtured there, people take care of us. Family meals can be a very stressful time, so to be at a place where you can sit and be well taken care of, that’s a big deal to everyone.”
The retreat, which typically takes place in the winter, has come to represent “the new year” for many parents who attend. The organizers also offer an annual autism spectrum disorder (ASD) symposium, which this year takes place March 21-22 at Rhodes on the Pawtuxet in Cranston. In addition to educating professionals and parents of children with autism, the symposium serves to raise funds to support the parent retreat, enabling any interested parent to attend regardless of their ability to pay.
“We’ve created a community here that helps everyone become the very best parent they can under the circumstances,” concluded Meyer. “It has been one of the greatest sources of professional pride for me, to create this environment and sustain it over 18 years. We’re making a difference in people’s lives.”
URI alumna Elaine Meyer (right), one of the organizers of the retreat, poses with alumni Eileen and Henry Fiore, the parents of a child with autism.