Autism specialists at the Children’s Hospital of Philadelphia are using a sophisticated online tool to connect families with local resources
By developmental-behavioral pediatrician Amanda Bennett. Dr. Bennett directs the Autism Speaks Autism Treatment Network site at the Children’s Hospital of Philadelphia (CHOP). She also serves as a clinical consultant for the hospital’s Center for Autism Research.
As an autism specialist and the site director for the ATN in Philadelphia, I’d like to tell you about a wonderful online tool developed by our hospital’s Center for Autism Research (CAR). The CAR Autism RoadMap provides guidance to local resources as well as general information on autism and autism research.
I’ve been using this tool extensively to help my patients and their families. This comprehensive website helps families find information about autism based on their needs. I find that it complements Autism Speaks’ library of tool kits.
CAR Autism Roadmap™ is for families and individuals who:
• Suspect their child may have autism
• Have received an autism diagnosis and need direction
• Are looking for local resources and support
CAR Autism Roadmap™ is designed to help families:
• Learn about autism, 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
The concept for the CAR Autism Roadmap was developed by Deb Dun, the outreach director at the Center for Autism Research, and Gail Stein, its head social worker. Joy Payton and her colleagues in in the Research Information Systems department of the Children’s Hospital of Philadelphia helped make Deb and Gail’s vision a reality. And autism specialists in our Autism Speaks ATN and the Center for Autism Research reviewed all the content.
Website development also involved extensive input and testing from families 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.
In addition to providing general information about autism, the CAR Autism RoadMap also provides an abundance of information on services in Pennsylvania. This goes far beyond referrals to treatment specialists. I’m particularly excited about the availability of information on community-based social and recreational opportunities for our growing population of adolescents and pre-adolescents with autism. The Road Map has become one of the most comprehensive collections of community-based resources available to families in the Philadelphia region.
As an online tool for clinicians, the CAR Autism RoadMap allows primary care providers, developmental pediatricians and other specialists to access information about potential autism treatments and resources. It also helps them make appropriate referrals to other specialists in our area.
Our ATN site at CHOP has been working to share the word on this new website with as many Philadelphia-area clinicians and families as possible in hopes that it will maximize access to the many resources available in our region. We also hope it will serve as an example for similar online tools in other communities.
This is one example of how we, at CHOP, go beyond treating symptoms, to invest in the quality of life of our patients and their families. For me this is part of providing comprehensive, coordinated holistic care for the entire family while helping them navigate across systems. It’s about our ATN centers and clinicians meeting our families’ needs. It’s putting online resources to work for families.
Editor’s note: For a national directory of autism resources, see the Autism Speaks Resource Guide. Or contact the Autism Speaks Autism Response Team for live help finding resources in your area (888-288-4762 or en Español 888-772-9050, or email firstname.lastname@example.org).