MICA GDMFA Thesis 2012
Autism is a developmental disability that affects a person’s ability to communicate and socialize. The Autism spectrum is wide and can range from mild to severe. Some individuals may be nonverbal, while others may be gifted with words, numbers, and memory. No two cases are ever the same. There is no known cure for Autism, but doctors, therapists, teachers, and parents can help children overcome challenges in order to lead a fulfilling life/lives.
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research

How can design and technology play a role in building more consistent care for an individual with Autism? How can interface design contribute to making the care process more simple, enjoyable, and accountable?

1
Core77 & Autism Speaks
I first became interested in Autism because I submitted a design to Autism Connects, an international design challenge sponsored by Core77 and Autism Speaks. The challenge asked students to help individuals with Autism Spectrum Disorder (ASD) better connect with the world around them and allow people who do not have ASD to better understand and connect with those who do. My design for WeSync won the juried prize and the community prize, and I was invited to present it to top Autism researchers, educators,and parents of kids on the spectrum at the 2011 International Meeting for Autism Research (IMFAR). Though my design was only a prototype, I received excellent feedback. I was moved by how many people were excited about the way it looked, functioned, and how it might fit into their daily lives. I laid out a plan for research and spent my thesis year listening to and working with the Autism community.

2
Interviews
I interviewed nearly 40 parents, teachers, and specialists about the challenges of organizing caring for a person with Autism. Through these conversations, I learned that caregiving can be as isolating and stressful as it is rewarding, that coordinating care amongst family and professionals can often be a challenge, and that many careplans contain an exhaustive amount of paperwork.

3
Card Sort
I developed a card sort at the suggestion of my thesis advisor, Rob Giampietro. Card sorting is a technique for finding the best way to organize content in an interface design. With the help of a Mom of a kid with ASD, I created 50 cards with words and phrases of potential content. Then, potential users were asked to rearrange the cards into into groups or clusters and name the those categories as they see fit. Learning how users view the content, rather than myself, provided valuable input. I incorporated these viewpoints into the new prototype for WeSync.

4
Observation & Play
For six months, I volunteered weekly to play with a 4-year old boy who has Autism. We did puzzles, drew pictures, and raced imaginary cars. I had the privilege of trying to see the world from his perspective, and witnessed some of the ups and downs of caring for a kid on the spectrum. There were sad days when he faced the wall crying for reasons that I did not know or understand. Then there were breakthrough days, like the first time he said my name aloud. I met biweekly to observe his teachers, therapists, parents, and volunteers and began to understand their lives as well. I observed how they communicated with each other. I realized that when they talk, it is less often to compare hard data, like a 24% percent decrease in whatever. More often, they would share stories or moments about the time they last spent with the child. Learning this directly influenced the decision to include more stories, photos, videos, and emotive components in my second prototype for WeSync. Finding more human ways to track data became my new challenge.

Old Design
A new digital tool should or might:
  • Include emotion and experience, not just data
  • Reduce and organize paperwork
  • Connect caregivers with one another for support and advice
  • Streamline care amongst people who are ethically able to participate
  • Customize care and be flexible
  • Simplify information to make care more manageable

prototype

WeSync is an online tool that helps caregivers of children with Autism share and manage information with parents, teachers, relatives, and others.

Audio by Lullatone. Video best viewed in Google Chrome.
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Exhibition

April 6–April 15, 2012, Meyerhoff Gallery at the Maryland Institute College of Art.

Icons by Eric R. Mortensen

Writing

One year ago, I designed a prototype for an app and website for caregivers of children with Autism Spectrum Disorder. A distributor in the healthcare industry advised me to copyright the idea, build it, and put in the world for people to use. I hesitated. I knew that I had much to learn about Autism and the daily lives of caregivers. Before I could design an effective tool, I had to better understand the lives of the people who would use it, and I had to work directly with them to craft it.   →  read more