Trusted Resources and Information about Autism

Search for “autism spectrum disorder,” and Google instantly returns more than 20 million results. Where are parents with a child on the spectrum to turn for trusted, vetted and helpful resources?

Now there is the Autism Roadmap™, created by the Center for Autism Research (CAR) at CHOP. The Autism Roadmap is a comprehensive, one-stop website to help families find accurate, up-to-date information about autism spectrum disorder (ASD).

The site provides customized information based on what families need — whether their child has just been diagnosed or they’ve hit an obstacle and need new ideas and resources.

“It’s all about looking for the unique village of support, resources and programming you need to make progress,” says Jean Schultz, whose son Brandon is on the autism spectrum. “The Roadmap provides the information needed to create that for families — no matter where they are in their journey.”

Families using the Roadmap find directories of service providers, community resources, government programs, information and ideas for various stages of life, plus explanations of the latest research on ASD treatments and interventions. Families can search based on a variety of criteria, including zip code, search radius and type of provider, such as a speech-language pathologist, dentist, psychologist and so on. The site contains more than 400 vetted articles.

“With one in 68 children now thought to be affected by an autism spectrum disorder, more and more parents are struggling to understand an autism diagnosis, find the resources their child needs, and get help for all the normal milestones: from toilet training and school to adolescence and adulthood,” says Judith Miller, PhD, a Psychologist at CAR who was instrumental in the site’s development.

“There was no comprehensive, one-stop shop to find this information,” says Gail Stein, LSW, ACSW, the Clinical Social Worker at CAR. “For example, how and where can your child learn social skills? There was no clear path.”

The Roadmap was supported entirely by philanthropy and developed with nearly a dozen of the nation’s top autism experts at CAR. Families, researchers, and mental and behavioral health workers from the greater Philadelphia area gave input to ensure it was comprehensive and easy to use. It is continuously updated with new information.

“Because it’s critical that parents use reliable information and resources, it is so wonderful to have the Roadmap, where you know the information is credible,” says Schultz. “And it’s so easy to navigate. If you are just learning about the diagnosis, you can read the basics. If you are looking for research articles and more in-depth, current information, it’s there. You don’t need to go hunting all over the Internet!”

Other CAR activities

CAR’s mission also includes research, working to improve community and service provider awareness of ASDs, and improving access for children with ASDs and other developmental disabilities to comprehensive care.

• autismMatch — an online research registry to match families interested in taking part in autism research with researchers at CAR and other institutions
• Next Steps Workshops — a series of educational sessions for parents and professionals that address important milestones for families living with autism
• Distinguished Lecture Series — featuring internationally renowned autism researchers who usually give an academic lecture and a lecture for family members, individuals with ASD, teachers and others who work with those on the spectrum
• Huddle Up for Autism — an annual community event, sponsored in partnership with the Philadelphia Eagles, that combines fun family activities with raising awareness of autism