Battling N.J.'s autism epidemic
Number of ASD-related services increase but some gaps remain
BY JENNIFER KOHLHEPP Staff Writer
Finding the means to raise children who will live to their highest potential has and always will be a challenge. Currently, there's an epidemic in New Jersey making this feat even more exacting.

Ryan Sullivan, 5, smells one of the scented candles his family keeps on hand to satisfy his sensory-seeking behavior while his father, Michael, looks on.

According to the Centers for Disease Control and Prevention, New Jersey has the highest autism rate in the nation. With one in 94 children (one in 60 boys) born in the state being diagnosed with autism spectrum disorder (ASD), parents have much more to worry about in the way of their children's security, health and happiness.

A

utism is a developmental disorder

that affects the processing of sensory information. Those diagnosed with ASD, a lifetime condition that is currently incurable, suffer varying degrees of isolation because their ability to communicate and relate with others is severely affected.

According to Autism New Jersey in Ewing Township, isolation stemming from the disorder itself is a fact of life for many who have ASD, but isolation in the form of a lack of available services for them and their families and friends desperately trying to help is unnecessary.

Becky Sullivan watches her 5-year-old son Ryan, who is autistic, play in their Allentown home on Sept. 10.

Nonprofits like Autism New Jersey are trying to make the gaps in these services much less pronounced now than in the past. In its 40 years of existence, Autism New Jersey has grown its referral list to thousands of parents and professionals who help others cope with a new diagnosis, find the latest research concerning the disorder, locate support groups and seminars, give legal advice and coordinate with advocacy groups, among other efforts.

Allentown's Sullivan family said they have a lot of people to thank for how far their son Ryan, 5, has come since being diagnosed with ASD at the age of 2.

"We're very appreciative, but it's never enough," Becky Sullivan, Ryan's mother, said.

Although there is no longer a dearth in autism-related services in the state, just three years ago, most doctors in New Jersey still didn't have an autism symptom checklist in their office, according to Sullivan.

"This is why some children aren't diagnosed until they're 4 [years old]," she said.S

he explained that her family expressed concerns at Ryan's 18-month checkup about him not being able to use language and gestures purposefully. The pediatrician told the Sullivans that their son was fine, and that he would grow out of the phase by the age of 2.

At 20 months old, Ryan went to the hospital emergency room, where he was diagnosed with pneumonia after having 13 ear infections. After listening to the fam- ily's concerns, hospital staff encouraged them to seek Early Intervention, which refers to services given to very young children with special needs.

"Early Intervention was key," Ryan's mother said. "They came to our home to evaluate him. When we got the reports back, we were devastated. At the age of 2, Ryan was functioning like a 6- to 9- month-old."

Early Intervention helped the family learn that while Ryan could walk and climb and say Momma, Dada, and nightnight, he wasn't using his fine motor or his communication skills properly.

Although Early Intervention helped them a great deal, the Sullivans discovered another gap in autistic-related services at that time. Early Intervention does not diagnose a child with autism. The diagnosis comes from a developmental pediatrician. Three-and-a-half years ago, there were only 20 in the state, and the Sullivans were put on a nine-month waiting list.

"There was an explosion in the autism rate, and the doctors couldn't see them fast enough," she said. "We got in early because of a cancellation. We got the diagnosis on April 20, 2006. I'll never forget."

Even though the family had been doing its own research and suspected that Ryan had ASD, they were still rocked when their suspicions were verified.

"It was hard to accept that my child may never have the things in life that we all hope for," Sullivan said. "When you hold a baby, you think he will one day graduate from college, have a home, have a wife, have a baby, have a life."

Today, Ryan is a happy, healthy, playful and curious boy. When he plays among a group of his peers on the playground, he looks and acts no different from them and has just as much fun. His mother said one of the only indicators that he is different from other children his age is that he needs prompting to talk.

Ryan has aphasia, an inability to produce language. He can process what's going on around him, but can't put what he's thinking into words. At home, he uses a Picture Exchange Communication Sys- tem, which is a book of pictures of various objects that he can point to when he is asked to communicate something.

For example, when his mother asked him what he wanted after picking up his juice-box, he pointed to three pictures that told her he would like juice.

So, although he looks and acts like most other children his age, Ryan is not ready for public school. He attended Eden Institute in Princeton and Mercer County Special Services' Joseph F. Cappello School before enrolling in Search Day Program in Ocean.

The family's experience with autismrelated school services for Ryan has been predominantly positive.

"Thanks to the Wawa House, which sponsors a 3- to 5-year-old program at the Eden Institute," Sullivan said.

Even when the Sullivans did have concerns about Ryan's school placement, due to an excessive amount of teacher changing in a short period of time, the public school district "was very cooperative," she said.E

ach public school district must provide an education for all of the students living in its jurisdiction regardless of race, creed, color, national origin, ancestry, age, marital status, sexual orientation, gender, religion, socioeconomic status or disability. However, when it comes to placing a student with special needs in a private school, some districts help more than others. The Sullivans had no problems working with the Upper Freehold Regional School District.

"We said we have got to find the appropriate place for our child, and they were very open to the idea," Sullivan said. "We were shocked, because we heard that people [in other districts] had to sell their homes and move."

To supplement Ryan's year-round schooling at the Search Day Program and his 15 hours of therapy per week, his family has also searched out more unconventional services that could benefit their son. "We are trying to find ways to calm him and bring him in tune with other people and himself," Sullivan said.

This summer, Ryan had the opportunity to take part in the Surfers Healing surf camp held Sept. 13 in Belmar. Surfers Healing was founded by parents of a child diagnosed with autism and suffering from sensory overload that calmed down when on the ocean surfing.

Ryan got to put on a wetsuit and go out into the ocean on a surfboard with a professional surfer.

"While the wait was long [his scheduled slot was 1:30 p.m. and he ended up going around 3 p.m.], he had a blast," Sullivan said. "When he finally got to get out, there was an extended lull in the waves. But when he finally got to ride, wow, the ear-to-ear grin."

Sullivan said that Ryan's inability to verbally communicate what he thought about the experience prevents the family from truly knowing what he thought, but his staying an extra two hours playing with his father, Michael, in the surf, meant something.

"I would say that it did something to his spirit," she said. "Mike may now have to learn to surf."

The Sullivans are already thinking about attending next year and recommend the program to anyone who gets the chance to participate.

The family said they are lucky because they haven't had as many barriers as some of their friends with autistic children have had. However, they continue to advocate for more resources and services for families affected by autism.

She said Sen. Robert Singer and Assemblymen Ronald Dancer and Joseph Mallone (all D-30) all took the time to personally call her to discuss her concerns about autism initiatives when she wrote to them.

The family also advocates for more research to find a cause and a cure by participating in numerous surveys and medical studies, as well as fundraisers like the Family Resource Network's fifth annual Beach Bash.

"They provide a lot of respite, either in funds or activities or getting you in touch with other organizations," Sullivan said.

The Sullivans will also take part in Walk Now for Autism Central New Jersey on Oct. 11 at Mercer County Community College in West Windsor. Registration opens at noon, and the 1.5-mile walk starts at 2 p.m. To contribute to Ryan's Rebels, which has set a goal of raising $2,000 for the event, visit www.walknowforautism. org/centralnewjersey/ryans_reb els.

While the causes of autism remain unknown and the disorder remains incurable, Early Intervention and other autism-related services help teach families like the Sullivans to prepare for the worst but to hope for the best for their autistic children.

"Someday I hope Ryan will have a family and a job, if that's what he chooses," Sullivan said. "I just want him to be happy and I would love for him to talk."