Autism NOW: Visions for the Future, Today

Since its launch in April 2011, the new Autism NOW website has provided a dynamic and interactive, highly visible, and effective central point of quality resources and information for members of the autism community. As a result, Autism NOW has reached thousands of individuals—including parents and family members, individuals with autism spectrum disorders and other developmental disabilities, advocates, and policymakers—through its website, Facebook and Twitter pages, webinars, summits and conferences, e-newsletters, and personal interactions.

Funded by ADD through a 5-year Projects of National Significance grant that began in October 2010, Autism NOW is the new National Autism Resource and Information Center, a national initiative of The Arc of the United States. The initiative seeks to empower stakeholders by providing evidence-based, accessible resources and information.

“We’ve got tons of information and we’re trying to get it out to families where they can learn, grow and be empowered by those resources,” said Tonia Ferguson, director of Autism NOW. “You read so much about autism, and it’s so overwhelming, but we really try to provide high-quality information and resources in a very friendly way.”

Incorporating self-advocacy into Autism NOW’s work is essential, Ferguson said. Organizations serving as partners in the grant include Self Advocates Becoming Empowered, the Autism Self Advocacy Network, the Autism Society of America, the National Youth Leadership Network, and the Sibling Leadership Network. These organizations work on developing self-advocacy tools and ensuring that the resources presented on the site are relevant and useful.

The Autism NOW website is a vital component of the initiative’s mission, and more than 41,200 individuals have visited the site since its launch to gather resources and gain knowledge about the disorder. The whole purpose, Ferguson stressed, is to provide people with the information they need to be successful.

“It’s not just about finding therapies,” she said. “It’s about providing resources and information that are evidence-based and clear for people to understand.”

Webinars

Autism NOW hosts free webinars every Tuesday at 2 p.m., allowing self-advocates, families, and professionals to discuss a wide variety of topics affecting autism spectrum disorder and other developmental disabilities. Since the webinars began in January 2011, more than 7,100 individuals have received information on topics such as inclusive education, summer camps, employment, and socialization. The webinars are archived on the site, and the slides can be downloaded for later use. More than 15,200 individuals have viewed Autism NOW webinar slides.

2011 Regional Summits

In addition to its online presence, Autism NOW conducted five regional summits across the United States that emphasized and created a safe environment for sharing experiences and building community. The summits were held in Washington, DC; Indianapolis, IN; Orlando, FL; Los Angeles, CA; and concluded in Austin, TX, on August 13 and 14, 2011. A total of 650 individuals attended the five summits.

“The summits were a place of sharing,” Ferguson said, adding that the summits were more sensory friendly for individuals on the autism spectrum than typical conferences. She also noted that the summits facilitated relationship-building between stakeholders and families and “provided a safe place where people could be open about what they needed and about some of their fears.”

The 2-day summits, titled “Vision for the Future,” were free to registrants. Each summit included interactive discussions, mini-breakout sessions with local experts, presentations from professionals and self-advocates, and displays by local organizations that celebrate the autism and intellectual and developmental disability (I/DD) community.

“One of the things that we constantly heard all across the United States was that families loved hearing from self-advocates,” Ferguson said. “They walked in the door saying, ‘This is what my child can’t do,’ and they left saying, ‘This is what my child can do.’ Hearing from the self-advocates was the cornerstone of all our regional summits.”

Report on 2011 Regional Summits

After the summits, Autism NOW gathered lessons learned and developed a report, “Light at the End of the Tunnel,” which was released in December 2011. The report provides demographic information on summit registrants, survey results from attendees, and quotations resulting from round table discussions. According to the report, the majority of summit registrants were family members of a person with autism or I/DD, or professionals working with or for people with autism or I/DD. Fourteen percent of registrants were people with autism or I/DD. Notably, more than 96 percent of attendees responding to the quality control survey said that the regional summits were useful, effective, and helpful.

During the round table discussions, summit participants discussed what they considered to be the most critical issues for individuals with developmental disabilities, such as education and transition, employment, family and caregiver well-being, and acceptance. Other topics included advocacy and advocacy organizations, family members’ goals for their loved ones with disabilities, and the meaning of self-advocacy and self-determination. One self-advocate noted that, for him, self-advocacy is “truly a movement. It’s not something that you can put a tag on and say, well, that’s it…it’s a lifelong goal.”

For more information about Autism NOW and its work, and to view past webinars or register for an upcoming one, visit http://autismnow.org.