When Jordan Schoenfeld was three years old, he didn't speak a word, nor did he interact with others. He was living in the "world of one's own" associated with autism. Autism is a developmental disability which appears during the first three years of a child's life. It interferes with the areas of the brain which control verbal/non-verbal communication, social interaction and sensory development. It is estimated that 400,000 people in the U.S. have some form of autism, making it one of the most prevalent developmental disabilities, surprisingly even more common than Down Syndrome.
After spending time in a specialized preschool program which utilizes an approach to autism known as Applied Behavioral Analysis (ABA), Jordan is now a different child. He speaks full sentences, maintains eye contact with people, and even gives hugs to show affection. He has emerged into the world.
Yet as Jordan and other autistic school-aged children make the transition from these successful ABA programs into the more regimented Board of Ed special ed programs that are generally available, their prospects change - and usually for the worse. If, on the other hand, they could continue to receive ABA teaching, statistics show that 50 percent of them can be successfully mainstreamed. For parents like Jordan's mother, Suzanne Schoenfeld, those odds are worth fighting for.
Suzanne is co-chair of NYFAC (New York Families for Autistic Children), a non-profit foundation based in Howard Beach whose services include support groups for parents and siblings, as well as information, referral and outreach services. Together with members of another organization in Queens for autistic children, QSAC, the parents of NYFAC are fighting for the establishment of a school dedicated to autistic children currently in the system. The catch, however, is that there is a lack of ABA programs, and the few available are in remote locations such as Staten Island. So for children like Jordan, such a school option is moot. The parents of NYFAC are fighting now, according to co-chair and founder Andrew Baumann, "for other people's children ... and for the generations to come."
While education remains a strong focus of the group, for Baumann, the greater goal is family support. "When a child is diagnosed with autism, it is traumatic on many levels," he says. "It changes the dynamics of the whole family. Parents need to know what's available and where they can turn for help." Baumann started NYFAC because when his own child was diagnosed, he and his wife did what seemed like endless research and still felt helpless. "No parent should ever have to go through what we did," he says. Baumann decided to reach out to parents, as a few had to him.
NYFAC hopes to bridge the gap for autistic children and their families by uniting the best possible treatment services, sharing strengths, and working to facilitate change. Its members are parents trying to make a difference - to generate acceptance and nurture growth; to ensure quality services and support; and most of all, to protect the rights of families.
NYFAC offers family and professional memberships