Academy award-winning documentary filmmaker Mark Jonathan Harris began researching autism in 2009 when his two-year-old grandson was diagnosed. Thus began a journey that is all too familiar to families with children on the spectrum — wading through the glut of information and misinformation available through the Internet. As a documentarian and Distinguished Professor in the School of Cinematic Arts at USC, Harris had the benefit of experience with in-depth research, but witnessing firsthand the lack of vetted information made clear the need for a website that would provide a clearinghouse for autism resources and therapies. He was moved to collaborate with his colleague, media scholar and USC University Professor, Dr. Marsha Kinder to develop such a site. Dr. Kinder is a pioneer in the field of database narrative, an interactive genre well suited to conveying a wealth of information in an accessible and inviting way. In 2007 her research group had proposed a less comprehensive website on autism, for which she continued to seek support.
They continued their research together, noting that at many of the conferences they attended, presenters often used videos to demonstrate therapies. With these videos also came apologies, for the lack of image and sound quality. This was something they could address better than most. With the help of a grant from AHRQ (Agency for Healthcare Research and Quality), they set out to translate the latest, evidence based research on autism in the most accessible way possible—through the use of interactive multimedia and documentary filmmaking, with the goal of providing an experiential sense of treatments that would help families to decide what is best for their child.
In addition to working with the top medical experts on autism, Harris and Kinder made a concerted effort to include individuals on the spectrum as participants in a variety of ways — from interviewees to editors and filmmakers, including a budding fourteen year-old documentarian. Both Harris and Kinder believe that autism can be a source of strength, providing an alternate perspective and a way of working and perceiving that should be valued just as cultural differences, which are also addressed. The site is divided into three sections: Understanding Autism, Treating Autism, and Living with Autism. Currently, the site is available in English and Spanish, and it is soon to be translated into Mandarin. It has a searchable database of 30 videos and over 10 hours of interviews with some of the leading researchers in the field, and a section showing how autism is being represented in popular culture. Viewers are encouraged to engage with the site by leaving comments or even linking to their own videos posted on YouTube. Informational links to local health insurance coverage, Medicaid and educational resources are also provided through an interactive map.
The response has been great, with many commenting on the terrific range of information available and the use of video to make it real and accessible. According to Harris and Kinder, one of the initial goals of the site was to have something relevant to every family’s experience and through that inclusiveness to provide a sense of hope.
For Harris and his family, having the opportunity to truly understand a variety of treatments was essential in knowing how to best support his grandson. They chose to use Floortime and occupational therapy. His grandson is now 10 years old and doing well in a mainstream program at school. He recognizes that this is what worked best for them — but understands that one size does not fit all when it comes to autism therapies. Both Harris and Kinder encourage parents, educators, and advocates to explore the site so that they too can benefit from seeing these various evidence based practices in action. In sharing the tools that helped them understand, they hope to assist other families in making informed decisions that complement their individual situation.
Danielle Giudici Wallis is an artist, educator and mother of two tweens, living in Southern California. She has a BA from Antioch College and an MFA from Stanford University. She has been working with the Interacting with Autism Project at the University of Southern California since March of 2014.
This article was featured in Issue 33 – Let’s Get Moving and Stay Healthy