4 =a mnmyvwx Cc Oo 0 ONCE A DIAGNOSIS IS CONFIRMED, FAMILIES ACCESSING AUTISM FUNDING MUST LEARN TO NAVIGATE A COMPLEX SYSTEM OF THERAPIES AND SUPPORTS AND MANY STRUGGLE TO FIND AND ACCESS EVIDENCE-BASED RESEARCH AND INFORMATION “roadblocks,” from diagnosis until adulthood. As the individuals plotted out their experiences, they verbalized their stories, including frustrations and hurdles met along the way. Visually the map provided a way for the HDL team to extrapolate existing mental-models and experiences, and led to the identification of opportunities and pain points. Through this exercise, participants found the act of sharing, comparing and articulating their journeys to others, to be both informative and cathartic [4]. The physical and dialogic activities created for these workshops enabled participants and the HDL team to develop new understandings and empathy. This reflects design’s ability to collaborate actively in the social construction of meaning, as was demonstrated in the participatory sessions in which families articulated their struggles collectively [6]. The participatory methods used positioned families and individuals on the spectrum as the true experts of their own experiences. Often during the workshops, families were able to offer suggestions and advice to other participants, and it became evident that families had gained expertise through their own experiences that may be complementary to the expertise of researchers or practitioners in the field. This confirmed that their perspectives were invaluable and could potentially inform Autism research, and aid in the creation of valuable feedback loops in which both families and researchers learn and respond to one another, being experts in their own rights. The outline of family needs that we developed from these workshops revealed that it would be beneficial to establish a more family-centric approach to research. More specifically, we observed that communication between researchers and families was very limited, and in particular, that families had a hard time navigating and accessing credible research and information to inform their child’s care. Families expressed an urgent need for better access to knowledge - on best practices, the latest research, and evidence- based treatments and support. PHASE 2: GENERATIVE RESEARCH & DESIGN 2016/2017 The goal of the second phase of our collaboration was to address the gap in knowledge exchange identified through our research in phase one. We did this by gathering researchers and fami- lies together in order to challenge the existing communication paradigms and to inspire both stakeholder groups to participate in identi- fying opportunities and ideas for improvement. As designer and Founding Chair of the MFA program in Design for Social Innovation at the School of Visual Arts, Cheryl Heller states, “the real work of social innovation is to fix our broken human systems, the way to do that is by inviting real diversity into our lives; seeing and then removing the boundaries between us [7]”. This year we began honing in on ways to mitigate the intractable problem of creating cohesion among diverse individuals in groups, such as the Autism Community. With this in mind, we began to design workshops and activ- ities for cross silo interaction in order to break down barriers and gain insights on ways to design a future-state. Employing co-design methods was a radical turnaround from current modes of communication, and we felt this would help galvanize researchers and families as agents of desirable change [6]. The Health Design Lab hosted a series of workshops primarily comprised of researchers and parents or family members of individuals on the spectrum, in which storytelling was employed as a means of relaying the past and imagining the future [8]. These workshops involved two key activities: a string mapping exercise to help articulate and visualize current communication challenges; and an interview and brainstorming activity to generate ideas for improvement. The first string mapping activity tasked parents/family members to recall a time when they had an Autism research question. For example, “What are the benefits of art therapy for children with Autism?”. Then, taking turns around the table, each family member was asked to articulate where they might look for information to answer their question. Using an orange string on a pegboard, families members marked their journey, wrapping the string around the various places/people they might