You might have seen Conan O’Brien, who hosted this year’s 58^th Annual Primetime Emmy Awards wearing a blue puzzle piece as a lapel pin. The distinctive puzzle pattern in both the pins and the multicolored lapel ribbon reflects the mystery, diversity, and complexity of autism. These lapel decorations are intended to help raise awareness and fund research for a rapidly growing concern in our community and school systems.  North Shore residents should know that their community is out in front with providing various treatment options for those families who have a loved one diagnosed with autism.

According to the Autism Society of America, “autism is a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities.” Parents of children diagnosed with autism often struggle to feel like a real family.  They may be hesitant to pursue outside activities or even participate in special programs. Doug Flutie, a well respected local football player who came onto the national sports scene with the famous “Hail Mary” pass at Boston College and finished his career with a drop kick extra point for his hometown team the New England Patriots, together with his wife Laurie, founded Dougie’s Team in 1998 to honor their son Doug Jr. who has autism. Dougie’s Team mission is to help other families facing childhood autism through support and education.  Lisa Borgess, executive director of the Doug Flutie Jr. Foundation for Autism, recounts how the Flutie family began to discover what was possible for their son by participating in AccesSportAmerica, an Acton Massachusetts based national non-profit dedicated to the discovery and achievement of higher function and fitness for children and adults of all disabilities through high-challenge sports. “They were unsure if he could participate. In a matter of minutes Dougie was on a windsurfer! I’ll never forget the smile that was on Dougie’s face. That opened their eyes to the possibilities. Now they can do things as a family.” Dougie Flutie, now fifteen years of age, was diagnosed at age three with a form of autism.  Dougie’s world continued to expand with therapeutic riding of horses at Andover’s Ironstone Farm and they are making plans for him to experience skiing.

Speculation rages about the potential causes of autism and the seemingly rapid climb in diagnosed cases. According to a 2004 study by the National Institutes of Health, 1 in 166 American children is diagnosed with autism. The U.S Department of Education’s report to Congress on people with disabilities (1999) illustrated during the 1990s, people reported diagnosed with a recognizable disability increased by 16 percent, while autism diagnoses increased by a staggering 172 percent. Most believe better diagnostic criteria, increased reporting by physicians and heightened awareness by both parents and schools has contributed significantly to these climbing statistics. “I call these patients snowflakes,” reflects Peter Raffalli, M.D., F.A.P., an attending physician in child neurology at Boston’s Children’s Hospital, and an instructor in neurology at Harvard Medical School. “No two are exactly alike. They may share a diagnosis with another child, but will respond to medication and therapy in their own way.” Dr. Raffalli describes the criteria for diagnosis of autism as ever-evolving. The single term “autism” is being replaced by several new descriptive terms reflecting more specific clinical observations. This new terminology helps both parents and practitioners to understand the condition and obtain the best care. “Now the emphasis has been to pick up on it earlier,” says Dr. Raffalli. Even though it’s difficult to diagnose autism in children less than a year old, “we still begin to look at eye contact in infants,” he says. “I examine peer interaction, receptive language, unusual habits, motor mannerisms or unusual preoccupations that may exclude other interests.” Dr. Raffalli believes that applied behavioral analysis (ABA) is a crucial part of any treatment plan. He also recommends parents try therapeutic horseback riding, which offers many of the benefits of traditional occupational and physical therapies and sensory integration training while riding on horseback. Dr. Raffalli volunteers his time with children and on the board of directors with Ironstone Farm’s therapeutic riding program.

Applied behavioral analysis (ABA)  is the cornerstone of the programs that Melmark New England will be offering beginning in November 2006 at their new River Road facility in Andover. Melmark New England is a private, not for profit, community-based organization dedicated to serving children and adolescents within the autism spectrum disorders, among others. Rita Gardner, executive director, explains, “We expect 85 to 90 percent of our student population to be dealing with autism. So far the North shore’s rise in children diagnosed with autism is consistent with the national average. Schools reach out because they are doing a good job and want to do a better job. Working with the public school districts demonstrated an overwhelming need for these services.” Ms. Gardner explains the definition of ABA that she often uses for new parents and staff. "Applied Behavior Analysis is a discipline devoted to the understanding an improvement in human behavior.  But there are other disciplines with similar intent.  Applied Behavior Analysis focuses on objectively defined, observable behaviors of social significance; it seeks to improve the behavior under study while demonstrating a reliable relationship between the procedures employed and the individual's behavioral improvement; and it uses the methods of science-description, quantification, and analysis."  Cooper, J.O., Heron, T.E., & Heward, W.L. (1987).  Applied Behavior
Analysis.  Upper Saddle River, NJ:  Prentice-Hall, Inc. Growing up with a neighbor who had disabilities and was welcomed into her family of sixteen gave Ms. Gardner the spirit of inclusion long before it was a popular concept. “A breakthrough is combining a nourishing environment with sound practices to improve quality of life.”

“My whole focus is what I can do to help William,” says Bernadette Lionetta of Andover, whose son, now eight years old, was diagnosed with autism at seventeen months. William had difficulty hearing, initially thought to be due to chronic ear infections. At fourteen months tubes were put in his ears. When he still could not hear three months later, doctors began an examination process that led to a diagnosis of autism. “Breakthroughs occur with repetition and consistent discipline.” says Bernadette. ABA has been the backbone of William’s care. He also participates in the therapeutic riding program at Ironstone Farm in Andover. When William was five years of age he barely had twenty vocabulary words. He is up for his three year evaluation and Bernadette says his language skills have improved dramatically. “ABA can change behaviors” says Bernadette. “William is a bolter, an escape artist. It took 79 times of pulling him off the bars that cover the windows and getting him started on a new activity for him to break the cycle of climbing on the windows. Now he doesn’t do it at all.” Still, Bernadette displays the resolve needed to hold together a family. “I spend 75% of my time managing William’s care. I have two other little girls that also need me. I wish my ten year old did not have to know the vocabulary or experiences of a family with autism. They are the forgotten victims.”

As awareness about autism grows and the number of diagnosed cases continues to climb, families, school systems, and communities are reaching out for qualified assistance. Ironstone Farm, located at 450 Lowell Street in Andover provides therapeutic horseback riding to improve the quality of life for people with disabilities. The program serves 450 individuals weekly with 32 professional staff, 33 horses and over 150 volunteers.

“Therapeutic riding helps the children focus and allows them to follow directions” states Deedee O’Brien executive director of Ironstone Farm. “The riders are calmed by the movement of the horse; it helps them function in an orderly manner.” Ironstone Farm began providing therapy in 1983. During the past five years they have served families from 92 cities and towns in Greater Boston, on the North Shore and in southern New Hampshire.

Parent-to-parent sharing of resources seems to be the most recognized and trusted way to distribute information in the autism community. This is an ongoing story for the nation and all of us who live and work on the North Shore. Please let us know your thoughts on autism and share your own story by visiting us at www.nshoremag.com

These are some of the resources that were given during the interviews for this article:

Autism Society of America www.autism-society.org
Center for the Study of Autism www.autism.org
Melmark New England www.melmarkne.org
Ironstone Farm www.challengeunlimited.org
Doug Flutie Jr. Foundation www.dougflutiejrfoundation.org
Autism Speaks www.autismspeaks.org
AccesSportAmerica     www.accessportamerica.org