Autism Spectrum Disorder affects 1 in 88 children, according to the Centers for Disease Control and Prevention. To help families, the Cary-based National Autism Network launched a new social network design specifically and solely for the autism community.
I checked in by email with Cari DeCandia, the network's director of business development and mom of a three-year-old, to learn more about what they're doing to help families find answer and make sense of a diagnosis.
Go Ask Mom: Tell me why you started the National Autism Network. What's the group's goal and purpose?
Cari DeCandia: National Autism Network was started to create the largest online resource for the autism community. Parents and family members would spend endless hours scouring countless websites researching everything surrounding autism. There was no way to determine what was credible and what was not without tremendous effort. There was also no clear way to organize the information, and no way for parents, individuals or family members who were affected by autism to easily connect with others for information and support.
Our goal is to connect people affected by autism and to help educate – to assist the autism community by providing thousands of hours of research in one place.
GAM: You've developed a new social network for the autism community? Why is it needed?
DeCandia: National Autism Network (NAN) is an environment that allows people to feel safe in sharing their experiences as everyone there has had similar circumstances. It allows parents to connect with other parents who may share the same struggles and celebrate the same accomplishments. They can easily find other parents locally with children similar ages for meet-ups and support.
NAN also provides family members with a unique opportunity to connect with other siblings, grandparents and other family to share experiences and gather support.
Individuals on the spectrum are able to connect and build a network of other members who share similar interests. NAN also provides them the opportunity to connect locally and/or across the nation.
Another unique feature of the social network is the ability for parents to connect with providers. Prior to NAN, parents would spend hours talking to and updating the different providers for their child – from behavior analysts to speech therapists to occupational therapists.
Naturally, parents want their child’s providers to be well-informed and all on the same page, but time and again providers have had to decline Facebook invitations and other requests to connect from parents because of ethical and privacy concerns. With the rise of social media, we knew there had to be a better way to connect the autism community. That is when we came up with the idea of using social media to connect parents, providers, and individuals on the spectrum in a safe, HIPAA secure environment. The end result is time savings for parents and better care for the child.
GAM: How does it work?
DeCandia: A user would simply click on the ‘Join’ button located on the home page. Depending on the profile type, there is a short registration process. Once that is completed, they can set up their social network profile and begin to build their network and establish connections through our search page, which offers a variety of filters.
Parents will also have the opportunity to create the HIPAA secure private network for their child. The child’s private network page is similar, but the page also includes information such as their diagnosis and types of treatments and therapy in which the child is currently involved. The last step is for the parent to invite the child’s providers as well as any family members involved in his/her care to be a part of the private network.
GAM: How are you getting the word out about it?
DeCandia: The word of mouth factor has been our biggest ally. Parents are truly excited about this, so it’s been a fast, organic growth. We are also about to launch a nationwide media campaign to help make the community aware that we are up and running.
GAM: What are your hopes and goals for the network for the future?
DeCandia: Our goal is to have a positive impact on the autism community. By providing access to the latest information, resources, and opportunities to connect, we hope to enrich the lives of individuals and families across the nation.
For more, go to the National Autism Network's website.