Autism awareness begins with one family’s story
Photo courtesy of John Murray
April is National Autism Awareness Month, designated by the Autism Society in the 1970s to highlight the growing need for the public to become aware of and educated about the disorder.
Autism is a complex developmental disorder that typically appears in the first three years of life and affects a person's ability to communicate and interact with others, the Autism Society's website explains.
Autism is the most common type in a group of developmental disabilities known as Autism Spectrum Disorders (ASDs), according to the federal Centers for Disease Control and Prevention (CDC). It is called a spectrum disorder because the thinking and learning abilities of people with ASDs can vary from gifted to severely challenged.
Most children on the spectrum have difficulties with social interaction, verbal and nonverbal communication, and repetitive behaviors. That description, however, does little to describe the difficulties and challenge they and their families face.
One family's story
This week, John Murray of Edgartown, whose eight-year-old son Ryan is autistic, shared some of his family's experiences in a phone conversation with The Times.
Mr. Murray came to the U.S. from Dublin, Ireland, 26 years ago. He met his wife Rosemary, who is from Rio de Janeiro, Brazil, about 15 years ago.
Their son's first 18 months of life were difficult, Mr. Murray said. Ryan was born with a 55-percent hearing deficit, which could not be addressed until he recovered from several hospitalizations due to pneumonia.
"Other than his hearing loss, he seemed to be developing normally, a kid that played a lot and made a lot of eye contact and just liked fun," Mr. Murray recalled.
When Ryan was fitted with hearing aids at about 17 months old, Mr. Murray said he and his wife expected to see a dramatic change in how their son responded to the world around him. Instead, Ryan began to withdraw.
"At times, he was just sitting in the middle of the floor," Mr. Murray said, with a catch in his voice. "No matter what you did, you couldn't get any eye contact with him. He wouldn't say a word."
Mr. Murray called his niece in Ireland, who has two children with autism, and described Ryan's change in behavior. At her suggestion, the Murrays took Ryan to Children's Hospital in Boston for evaluation. He was diagnosed with moderate to severe autism. Specialists there put together a program of recommended therapies.
Like many autistic children, Ryan demonstrates a wide range in skills and abilities, and amazed his parents when he started to read and write at age two, Mr. Murray said.
"Ryan's way ahead of kids his age in reading and writing, and his spelling is better than mine," he added. "Most of our communication is through the written word."
Although Ryan knows sign language and understands it, he doesn't use it much anymore, Mr. Murray said.
"He's more verbal now, but he speaks words the way he hears them, so with his hearing loss, it's often difficult to understand what he's saying," he explained. "The speech therapist at school is working hard with him three times a week."
Communication becomes especially challenging when Ryan is sick, Mr. Murray said. Since he can't verbalize what's wrong with him, his dad draws pictures of body parts and Ryan circles what hurts. "It's a process; everything's a process," he said. "But he's a wonderful, wonderful kid, and so funny and creative."
Ryan's challenges also impacted his two siblings, Mr. Murray's children from his first marriage, John Patrick, 21, and Jennifer, 19.
"They were older when Ryan was born, about 13 and 10," Mr. Murray said. "You do end up neglecting the others a little if you have a child with challenges. It puts a stress on your family life and your relationship with your spouse."
Mr. Murray said that he and his wife are fortunate that their experience with Ryan brought them closer. "It's hard to have a social life, though," he said. "When Ryan was younger, we had to find people to babysit that knew how to handle autistic children. At times when he couldn't express himself, he would get frustrated, run into the wall or have a complete melt-down, which could go on for an hour."
In the past eight years, the Murrays have spent only two nights away from Ryan.
"You give up a lot, not just with a child with autism but with any child who has disabilities," said Mr. Murray said. As the facilities director at Martha's Vineyard Hospital, he added, "I have a good job, thank God I do, or we couldn't afford to do a lot of things, otherwise. A lot of families don't have the finances or resources to take a break."
For the past two years, his wife has not worked, in order to care for and focus on Ryan.
After his autism diagnosis, Ryan first attended the Project Head Start program on Martha's Vineyard. He did not speak for the first year. At age three, he became one of the first students in the Martha's Vineyard Public School's (MVPS) new Bridge Program at Edgartown School.
Mr. Murray said he could not give the program and the teaching staff enough praise. "The work they do is incredible," he said. "We would have had to move off the Island a long time ago, to get what was best for him, if it wasn't available."
Martha's Vineyard Public Schools programs
In recognition of rising numbers of students with ASDs and the need for early intervention, MVPS took a proactive step several years ago. Autism specialist Hope MacLeod started up the public schools' autism program in 2002, after helping director of student services Dan Seklecki write a grant for the program. Martha's Vineyard was one of only 26 communities statewide awarded the three-year grant.
The autism program, which currently serves about 75, provides professional consultation and quality educational services to Island children with ASDs from birth to age 22. The program's FY13 budget is $102,919.
Over the last several years the need for services and support grew as the number of elementary-aged children with multiple involved disabilities increased. With the support of superintendent James Weiss and approval from the All-Island School Committee, Ms. MacLeod, Mr. Seklecki, and early learning coordinator Ann Palches created and set up a collaborative program that would serve children Island-wide more efficiently and cost-effectively.
The Bridge Program for students with ASDs and communication and social interaction disorders at the kindergarten, first and second grade level began in the 2008-2009 school year, included under the superintendent's shared services budget.
The Center for Children with Special Needs in Glastonbury, Conn., provided consultation and staff training during the Bridge Program's startup, funded by grants.
A second Bridge Program component with an additional teacher and an assistant to work with the oldest students was added last year. The program currently supports 11 children with two teachers and seven education support professionals (ESPs). Another full-time ESP will join the program in FY13, with a budget of $412,001.
In addition to the high degree of support they receive in the classroom and school environment, children in the Bridge Program are provided additional services such as physical therapy, occupational therapy, speech and language therapy, and hearing and communication training with autism specialists.
The program incorporates "reverse mainstreaming," in which children are in a separate classroom and also are assigned to a regular education classroom where they participate as much as their individual education plans specify.
Although children do not "outgrow" autism, studies show that early diagnosis and intervention lead to significantly improved outcomes and reduce the cost of lifelong care by two-thirds, the Autism Society website says.
Mr. Murray said he tries to give Ryan as much of a normal life as possible, but worries about his son's future and how he will support himself.
In the meantime, however, like many kids his age, Ryan is working with an instructor towards making his first Holy Communion this spring.