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The following "For Your Information" article appeared in State Health Notes, Volume 23, #365 on February 11, 2002. It has been reprinted with the permission of the National Conference of State Legislatures, Copyright 2002.

State Health Notes is a publication of the Forum for State Health Policy Leadership, an information and research center at the National Conference of State Legislatures in Washington, DC. Anna C. Spencer is the author.

First Signs would like to thank the staff at State Health Notes for allowing us to reprint their article.

FOR YOUR INFORMATION
From State Health Notes - February 11, 2002

First Signs: Educating Parents and Physicians about Autism

While most people might consider autism to be a relatively uncommon condition, the truth is otherwise: Autism ranks third, behind mental retardation and cerebral palsy, as the most common childhood developmental disability. According to estimates by the Centers for Disease Control and Prevention, the prevalence of autism is between 4.0 and 6.7 per 1000, with boys being three-to-four times more likely than girls to be diagnosed with the disorder.

Characterized by communication difficulties, social interaction problems and the need for sameness or repetition in behavior, autism is a complex neurological abnormality that manifests itself uniquely in each child. Often called autism spectrum disorder to reflect the wide range of disabilities and intensity of symptoms, autism has five distinct syndromes: autistic disorder, sometimes called "classic" autism; Asperger syndrome; childhood disintegrative disorder; Rett syndrome; and pervasive developmental disorder, or "atypical" autism. While the origins are unknown and a cure remains elusive, it is clear to many in the field that early intervention can markedly improve outcomes for children identified as having the disorder.

Enter Nancy Wiseman. After leaving a corporate job to care for her autistic daughter, the Merrimac, Massachusetts resident had an idea for an early intervention and outreach effort. The idea--which she called First Signs--came to life four years ago when she spoke at a developmental disabilities conference in the nation’s capital. In attendance were members of the New Jersey Governor’s Council on Autism, who took the concept for First Signs back to their state for review.

Last May, the council, along with the University of Medicine and Dentistry of New Jersey (UMDNJ) and Parents of Autistic Children (POAC), a New Jersey-based nonprofit organization, ponied up $350,000 to launch the very first First Signs pilot program.

The program’s primary goal is to improve early identification of children with autism and other developmental disorders through what Elaine Gabovitch, First Signs’ vice president, calls "a simple screening process." Both she and Wiseman had repeatedly heard parents complain about the fact that their pediatricians weren’t taking their concerns about their children’s developmental delays seriously. "At such an early age, it’s very hard to tease out the subtle differences between normal delay and serious developmental disabilities," Gabovitch noted. It’s critical, she continued, to get an autistic child into treatment as early as possible. "The window for intervention is very small. You really have to reach kids by the time they are three."

Other goals: encourage timely referral of children diagnosed with autism spectrum disorder to a community-based organization called Early Intervention, and educate parents about the key milestones of child development and alert them to warning signs that may require further evaluation. "While we don’t know how to prevent autism," Gabovitch explained, "we do know that early and intensive treatment can profoundly change the quality of life for autistic children and their families."

To kick things off, program officials last May mailed letters to 5,000 family physicians and pediatricians throughout the state, offering them a free screening kit to improve early detection of developmental disorders. The main components of the kit are a 20 minute educational video title On the Spectrum: Children and Autism; a developmental milestones wall chart focusing on developmental and autism screening tools; screening guidelines; and an early intervention referral guide, or "next step" directions, to help physicians help parents with a newly diagnosed autistic child. Doctors who complete the course materials in the kits are eligible for continuing education credits. Response to the effort has been far-reaching. "We’ve received calls from all over the country requesting the kits," Gabovitch said, and the eventual hope is "to take First Signs nationwide."

On the parental end, information packets on early child development were mailed to more than 90,000 residents with kids under the age of three. "Parents are the greatest advocates for their children," said Gabovitch. If they are educated about the important developmental milestones, "they will speak with their children’s doctors about their concerns and can be instrumental in expanding the knowledge base among physicians." +ACS

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