When 2-year-old Brandon Schultz of Bryn Mawr was diagnosed with autism in 2009, his mother, Jean, was devastated.
"You never think it's going to happen to you," she says.
But since those early days, Schultz, 44, a cardiac clinical care specialist, has become an advocate for finding a cure for and the causes of autism spectrum disorder. She speaks to parents and clinicians on her experience, and has enrolled Brandon in several clinical trials at the Center for Autism Research at Children's Hospital of Philadelphia.
One of her newest sources of information is the center's Autism Roadmap (http://www.carautismRoadmap.org/), the most comprehensive resource for autism services and information in the Philadelphia region.
So far, Schulz has used it to find playgroups for Brandon to help with his social skills and a dentist who cares for children with autism.
Launched in September, the Roadmap includes 400 articles and more than 1,000 resource providers. A pop-up feature connects parents with information on clinical trials at the center.
Since its launch, the site has averaged 1,556 page views per week, with 5,884 unique visitors from 31 countries and 49 U.S. states.
Although most of the resource providers on the site are in the Philadelphia area, the site includes providers in New Jersey, Delaware, New York, and Connecticut, with most of the resources offered outside Children's.
Only providers that support evidence-based care are included in the Roadmap. Articles covering matters ranging from what causes autism to dealing with college are written and vetted by experts. The site is regularly monitored to make sure all providers and information are up to date.
The Roadmap includes interactive features designed to tailor information to fit the ages and stages of individuals with autism. Time lines help parents understand what they need to anticipate as their children grow older.
"The time lines cut to the chase about things you absolutely must think about at defined time periods," says Gail Stein, a social worker who co-managed the Roadmap project with Debra Dunn, a consulting outreach director at the center. "They talk about when a child needs to go to the dentist, toilet training, going to school, and connect with information that leads you both within and without the Roadmap."
Feedback from focus groups who helped develop the site showed parents felt strongly "that they wanted the site to tell them what was most important for them to know at critical stages, such as when they have suspicions that their child might have autism, or right after a diagnosis," says Dunn.
The Wenger family, who became interested in the project after a grandchild was red-flagged for autism, funded the website. While visiting Children's to gather information about her grandchild's diagnosis, Susan Wenger questioned why there was no single online clearinghouse for reliable and comprehensive information on autism resources, and she offered financial support for such a project.
"I am finding the Roadmap to be incredibly helpful," says Amanda Bennett, a developmental pediatrician at Children's. "As a child ages and grows and develops new skills, their needs change, and families are always needing to find new service providers or ways to work on new needs.
"This is a diagnosis where we come into the medical world but end up sending families back to the community to get early-intervention and educational resources. Families can now go to one site that's pretty inclusive of all the different systems that they need to be aware of.
"I also like how parents might be able to find a music class or a karate class on the site. It's something families struggle with; when you have a child with a disability, you don't know who's going to welcome them," says Bennett. "Then there's a huge challenge when kids get to adult years; what's the plan going to be?"
For Jean Schultz, the more education and resources, the better.
"Once a family understands what autism is, it's all about looking for the unique village of support, resources, and programming that you need to move forward and make progress," says Schultz. "The Roadmap provides the needed information to create that for a family, no matter what stage they are in."
Center for Autism Research Autism Roadmap (http://www.carautismRoadmap.org/)
Autism Speaks (www.autismspeaks.org/)
Autism Now (www.autismnow.org)