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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