New website offers private social network for families, individuals with autism
Posted March 2, 2014
A child with autism can often have a busy network of 10 or more professionals supporting him. There are doctors and therapists, teachers and counselors.
As parents look for the easiest way to pass along information to all of those people, they often turn to social media platforms like Facebook to share successes and setbacks and seek advice. Some parents even set up Facebook profiles for their children. But providers aren't able to accept those friend requests for ethical and privacy reasons, says Cari DeCandia, director of business development for the National Autism Network and a mother of one.
DeCandia, along with her partner Denise DeCandia, launched the website to provide a secure environment where parents could share files and information with their child's caregivers and providers. The site is a HIPAA-secure social network that provides a private place where those in the autism community - parents, professionals and those with autism - can communicate.
"Parents would spend hours emailing providers with updates," Cari said. "They were looking for an easier way to disseminate the information."
Denise DeCandia has worked in the autism field for 20 years. She is owner and director of the Carolina Center for ABA and Autism Treatment in Cary. Denise is the one who saw the need for a private network, Cari tells me.
Cari has a background in business and marketing. And, she has a brother with Down syndrome. Launching a website like this was a perfect way for her to combine her interest in business with the desire to help people with special needs, she said.
Work on the website began about three years ago. The website launched a year ago this month as the largest online resource for the autism community with a nationwide provider directory, discussion forums, autism news and other resources. In the forums, parents, providers and people on the autism spectrum can talk, share information and build relationships.
"Making those connections, you can find people that have walked a mile in your shoes," Cari said. "And there's hope."
In November, the site launched the social network. Now, parents, for instance, can create a profile page for themselves to share information with their child's teachers, therapists and others. They also can set up a profile page for their child.
For parents, the site allows them to can connect with other parents, family members or individuals on the spectrum, but also communicate privately with their child's therapy providers and caregivers, sharing files and therapy notes instantly. Providers also can create a business profile page to build a following, provide updates, talk with other professionals and discuss topics.
Cari says that she expects to add more features over time, but so far the reception has been great. Some parts of the website are free. For other sections, there's a cost, starting at about $9.95 a month to about $150 for a lifetime membership.
"Every piece of feedback we've gotten has been positive," she said.
"I've never enjoyed what I'm doing more than what I'm doing right now," she said. "I get to create something really cool and, on the other hand, get to help someone. It makes you feel good."
For more about the network, watch my video interview with Cari and check out the National Autism Network website.
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