Newswise — The Center for Autism Research (CAR) at The Children’s Hospital of Philadelphia launched its Autism Roadmap (www.carautismroadmap.org), a comprehensive, one-stop web site to help families navigate accurate, up-to-date information about autism spectrum disorder (ASD). The web site provides families customized information based on what they need- whether their child has just been diagnosed, or they’ve hit an obstacle and are looking for new ideas and resources.
Families using the Roadmap will find directories of service providers, community resources, government programs, information and ideas for various stages of life, and explanations of the latest research on ASD treatments and interventions. The new web site was developed entirely as a result of philanthropy and with the expertise of nearly a dozen of the nation’s top autism experts at CAR.
“With one in 68 children now thought to be affected by an autism spectrum disorder (ASD), more and more parents are struggling to understand an autism diagnosis, find the resources their children need, and help a child with ASD through all the normal milestones: from toilet training and school to adolescence and adulthood,” says Judith Miller, Ph.D., a psychologist at CAR who was instrumental in the site’s development.
CAR Autism Roadmap™ is for families and individuals who: • Suspect their child may have autism • Have received an ASD diagnosis and need direction • Are looking for ideas • Are looking for nearby resources and support
CAR Autism Roadmap™ is designed to help families: • Learn about ASD, including symptoms, diagnosis, and impact on families and individuals • Get the latest information on treatment and therapies • Connect with resources for children, youth and adults
“There was no comprehensive, one stop shop to find this information,” says Gail Stein, L.S.W., A.C.S.W., a social worker at CAR. “You can figure out how to find a psychologist or speech therapist, but where do you go for social skills groups? There’s no clear path. There is just so much on the internet- where do you begin?”
This was the experience of Susan Wenger, who funded the web site’s development along with her husband, Don and other family members, after witnessing first-hand the difficulty of finding reliable information on-line and locating autism-specific resources for their grandson after he was red-flagged for ASD at a visit to the pediatrician. Like many families, the Wengers had certainly heard of autism and ASD in the news, but until it touched their family, they did not truly understand how a family’s life could be turned upside down by a diagnosis.
“After doing much research and after many meetings and phone calls, it became evident that we were facing a very long journey with many obstacles in our path. How could finding guidance be so difficult and locating the appropriate therapists next to impossible?” said Wenger. “I wondered why, with so many kids affected by autism, wasn’t there a single clearinghouse for information. A tool like this is just so needed - it will make life so much easier for parents and grandparents to help get children diagnosed with an autism spectrum disorder the resources they need as quickly as possible.”
The web site was developed with extensive input and testing from families, researchers, mental and behavioral health workers, and others to ensure that it was comprehensive and easy to use. It will be continuously updated as new information becomes available or as resources and community information change.
“This tool has the potential to greatly improve the lives of families struggling with the maze of government, medical and community service providers and as such, enables CAR to be a great service to the broader community,” says CAR Director Robert Schultz, Ph.D., director of The Center for Autism Research. “We’re extremely grateful for the Wenger’s support to help transform a longtime vision into a reality.”
For more information about the CAR Autism Roadmap™, visit www.carautismroadmap.org. For more information about The Children’s Hospital of Philadelphia’s Center for Autism Research, visit www.centerforautismresearch.com.
About The Children’s Hospital of PhiladelphiaThe Children’s Hospital of Philadelphia was founded in 1855 as the nation’s first pediatric hospital. Through its long-standing commitment to providing exceptional patient care, training new generations of pediatric healthcare professionals and pioneering major research initiatives, Children’s Hospital has fostered many discoveries that have benefited children worldwide. Its pediatric research program receives the highest amount of National Institutes of Health funding among all U.S. children’s hospitals. In addition, its unique family-centered care and public service programs have brought the 535-bed hospital recognition as a leading advocate for children and adolescents. For more information, visit http://www.chop.edu.