“When Shelby was two years old, I used to cry at night and think to myself, ‘Shelby will never be able to speak.’ All I wanted was to hear was her reply when I said, ‘I love you Shelby.’ All I wanted to hear was ‘I love you too, Mom,’” writes Jessica Nolde.

For mothers of children diagnosed with autism, Jessica’s experience is a grim reminder of how devastatingly draining autism is for families who have to cope with its hardships day-in and day-out. An estimated 1.5 million people in the United States have autism, and according to the American Centers for Disease Control, the disease affects 1 in 110 children across the nation.  

 Autism is a form of developmental disorder that affects information processing in the brain by changing how nerve cells and their synapses connect and organize.  Individuals with this disorder are challenged with impaired social interaction, limited communication, and restricted and repetitive behavior.  The families of those affected face daily struggles in performing the most common and mundane activities, from going grocery shopping to going to the movies or a restaurant. Not to mention the emotional and financial toll that comes with countless hours of treatments and therapies, even once those affected reach adulthood.

 As statistics rise, so do the number of organizations and businesses that help families deal with the disorder.  One such organization is Autism Speaks. 

Autism Speaks is dedicated to raising public awareness about the effects of autism has on families and society, and to funding global biomedical research of the causes, prevention, treatment and care of the disorder.  The organization advocates for the government and the private sector to hear concerns and be decisive to address autism as a global health crisis.

Founded in 2005 by Bob and Suzanne Wright, grandparents of a child with the disorder, Autism Speaks is a young organization that has made great strides to achieve its goals and serve families dealing with autism.  Its biggest advocacy successes are reflected in the passing of bills that aid the autism community throughout the country.  “Fifteen states now have insurance coverage for autism, and we are pushing the federal government to commit the dollars that the Obama Administration promised they would give,” says Mark Sirkin, Chief Community Officer at Autism Speaks.

The organization’s accomplishments are due to a dedicated staff, a myriad of events and advocacy efforts, and its visibility in online social networks.  Autism Speaks started its online outreach immediately after its inception, and established its presence in social media a year ago, and now has pages in Facebook, Twitter, Youtube and Ning.  The organization leverages the medium to both provide information and cultivate donor support. “The primary audience is people directly affected by autism, like parents, families, people who have autism themselves who are able to communicate with us.  We use social media for fund raising purposes as well,” says Sirkin. 

Social media has enhanced Autism Speaks’ reach and advocacy endeavors, as well as broadened the scope of its audience and donor pool.  “Where social networks have a huge utility is in how you organize all that stuff,” says Sirkin referring to the many advocacy activities the organization sets up, like walks and state and federal initiatives. “I think the power of Twitter and Facebook to coordinate, organize and mobilize people to go do something is pretty incredible,” he notes.

With close to 67 thousand fans on Facebook and around 4,000 followers on Twitter, Autism speaks is able to manage a growing constituency and an increasingly new donor demographic.  “Facebook has been a huge opportunity for us to extend our reach into the network and find new fans, new donors, new walkers and new families that are looking for our services,” explains Sirkin.  “We are also adding a lot of younger donors because of social media,” he says.

Even with the extent to which conversations enabled by online social networks contribute to Autism Speaks communication strategy, direct E-Mail communications are still immensely valuable for the organization to promote its causes and service families.  “It is really important, way more important, to get someone’s E-Mail address than it is to click the follow up button.  I believe that the social network conversation is really the first part of the funnel to try to get E-Mail addresses, so we can cultivate relationships even further,” explains Sirkin.

For such a young, small non-profit, Autism Speaks has managed to turn up the volume on public outreach, and leverage social media networks to increase its conversations with the public at large and garner new donors.  Autism Speaks and Twitts its way forward.