By Amelia Duggan
Photos by Eugene Parciasepe Jr.
September 2006
In words and in pictures, (201) pays tribute to the autism community. The time is ripe. In 2006, 1 in 166 babies born in the U.S. will be autistic. Just 10 years ago, the ratio was 1 in 10,000. New Jersey's own growth rate has been 400 percent higher than this national increase, translating to approximately 1 in 50. While Bergen-specific statistics are unavailable, the reputation of its services - both private and public - may only make Bergen's ratio greater than the state's. Families seeking treatment have moved here from as far away as Hong Kong.
A DIALOGUE BEGINS
Autism, a complex neurological
disorder impacting social interaction and communication skills, can be traced back to 1911, when a Swiss psychiatrist used the term to describe adult schizophrenia. Then, in the early 1940s, a doctor from Johns Hopkins applied the term to children who were withdrawn from human contact as early as age 1. It was not until the beginning of the 1960s that pediatric neurologists, including Englewood resident Dr. Arnold Gold of Columbia University, began to more precisely define the symptoms and treatments.
It is generally accepted that autism is caused by abnormalities in the brain. Brain scans can differ between autistic and non-autistic children. However, the cause of these abnormalities remains in question. Theories include genetics, environmental exposure, problems during pregnancy and delivery, viral infections, metabolic imbalances and more. The possibility that vaccines - and in particular, the measles-mumps-rubella (MMR) shot - play a role continues unanswered. A 2001 study by the National Academy of Sciences' Institute of Medicine found no link, but "could not rule it out."
There is also no clear understanding of why the numbers are climbing. Perhaps, it is because the medical community is now more willing to make the diagnosis, and society is more willing to accept it. Increasingly sophisticated diagnostics and screening may explain the rise. Greater exposure to environmental chemicals could also be a factor.
Autism is a spectrum disorder, meaning that it affects each person differently, and at varying degrees. No medical test exists to confirm or deny a diagnosis; tests can only be used to rule out other causes of the symptoms. A developmental screening - looking for "red flags" or missed milestones, such as the ability to speak - can be applied as early as 12 months, but the behaviors that are characteristic of autism generally reveal themselves at age 2. Only one thing is certain: The diagnosis is difficult and long - an accurate diagnosis may take months.
Neurologists maintain that a child's brain is still very pliable and can, in essence, rewire itself, resulting in significant progress - or even, in limited cases, recovery. The earlier the child is diagnosed and begins treatment, the greater the improvement.
NO SUMMER VACATION
Autism does not take vacations, nor is it something one grows out of. There is no cure - only treatment. Ordinary activities, such as how to eat a meal, brush your teeth, take a bath and sit through a haircut, need to be taught - sometimes, through a painstakingly repetitive process. But, if these milestones are achieved, windows and doors of possibility burst open, and children blossom. These breakthroughs and glimpses of normal life provide families a reason to hope, and the inspiration to press on.
New parents are filled with joyful optimism about the future of their baby. When parents learn that their child is autistic, their dreams are instantly shattered. Images of normal family life evaporate and are replaced with fear and devastation. But that is a temporary state for parents who take on the disorder with all their might and battle its debilitating effects.
Self-expression is frequently a challenge for the child with autism. Verbal language may be limited or nonexistent. Parents and even siblings must develop a personal system of communication. Hand signals and other nonverbal tools, including American Sign Language, are used to convey messages. The world outside may not understand this secret language, but those closest to the child do. As meaningful self-expression emerges, some of the aberrant behaviors disappear, and the child progresses and develops other life skills.
Parents of children with autism accept that it is a long and arduous haul to securing the services their children need to succeed. They also realize the importance of celebrating each milestone as their children advance.
BERGEN ON THE MAP
The Forum School, Waldwick, was one of the first special needs schools to emerge in Bergen. By the early 1980s, numerous local and county programs had been added like those of the Bergen County Special Services School District, but demand for autistic-specific services far exceeded supply.
Debra and Mark Gladstone of Alpine planted the seeds for a new school to be led by Dr. Bridget Taylor, the therapist for their son, Andrew. The couple joined forces with Jennifer and Jim Hoppe of Wyckoff and other families and professionals to form the Alpine Learning Group (ALG), Paramus, in 1989.
"Bridget is like the Tiger Woods of the autism community," says Mark Gladstone. "She is amazing at what she can accomplish with these kids. We are so grateful for all her work in helping Andrew succeed."
The school is now a nationally recognized leader in Applied Behavior Analysis (ABA), a treatment which breaks down tasks into short, simple fragments that are repeated until they are successfully completed. In one ABA program, 21 individual tasks are involved in eating a grilled cheese sandwich.
ALG alone was not enough to service the overwhelming demand. More private schools emerged. In 1995, the Institute of Education Achievement (IEA) opened its doors in New Milford. "Our daughter Kate had sleep issues for seven years," says Diane Lento of Oradell, one of IEA's founders. "Teachers came into our home every night and worked with Kate so that she could apply what she had learned in school and eventually learn to sleep through the night. That was an enormous breakthrough for us as a family."
IEA parent Carin Friedman of Tenafly beams when she talks about the accomplishments her 13-year-old son, Gabe, has made at the school. "Gabe has exceeded our expectations," says Friedman. "I'm happy for every day with him. IEA is an amazing place."
Other schools have since emerged, including the Educational Partnership for Instructing Children (EPIC) School, Paramus, in 1997. EPIC has expanded its enrollment since moving in 2003 to a newly renovated facility, financed through private and corporate fundraising.
Yet, despite the growing number of schools, access continued to be an issue.
Donna and Michael Sluka of Paramus knew that they wanted an ABA-based program for their son, Connor. All the existing schools were filled, their waiting lists several years long. With Taylor's help, the Slukas joined forces with other families, like Athena and Ken Nicholas of Wyckoff, to establish REED Academy, Garfield. Following the groundbreaking work of the Gladstones and the Hoppes, the couples developed a proposal, which was presented to state officials, for approval of a new school. After a year-long review process, the request was approved, and REED was established. The school opened in 2003.
"We knew we were going to be in this for the long haul," says Donna Sluka. "Other groups competed for approval, but dropped out because of the intensive process. We formed a nonprofit corporation, and took it from there. It eliminated our feeling of helplessness."
At all the private schools, the curriculum extends far beyond the classroom. In some cases, round-the-clock therapy is necessary to achieve significant results - particularly with children suffering with sleep issues, a common problem for children with autism.
The ABA approach is not limited to the private schools. Aspects of this philosophy have been incorporated into the public school systems throughout Bergen."It is wonderful to see how these children progress," says Michele Reale, who teaches disabled preschoolers in both integrated and special classes at Memorial School, Montvale. "With additional classroom support, they are able to enjoy a mainstream school experience."
ABA is also reinforced in programs like the Quest Adult Day Care Program at the Wyckoff Family YMCA, where ALG graduates have been able to parlay the skills they learned in school into real-life settings.
Other methodologies, such as picture exchange, help children build language. Floor time, through increasingly larger circles of interaction, assists the students in ascending the developmental ladder. But, just as the path to an autism diagnosis varies widely among individuals, there is no universal teaching methodology that has proven successful for all who face the challenges posed by the disorder.
While capacity and quality of services at both public and private schools has increased, the demand continues to exceed the supply.
MEMBERS OF THE COMMUNITY
The common message that Bergen parents want heard is the special impact their children have on the community.
"There are so many wonderful things to be learned from a person with autism," says Jim Hoppe. "These are remarkable, loving people, who enrich our lives in countless ways. Embrace them as a meaningful part of our society."
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