CONNECTING THE
AUTISM SPECTRUM
DISORDER COMMUNITY
THROUGH DESIGN

INTRODUCTION

Autism spectrum disorder (ASD) is the most
common neurological disorder in children and
is impacting our society in profound ways. ASD
nowaffects approximately one in 68 births. Given
this prevalence rate, it is estimated that there
are 60,000 people affected by Asp in British
Columbia alone [1]. Autism is characterized by
a complex behavioural phenotype and deficits
in both social and cognitive functions. This
disorder’s complexity requires early detection, as
itis an integral component ofrelieving symptoms,
finding appropriate interventions and ensuring
individuals are taught the skills necessary to
enhance their quality of life at a young age
when brain plasticity is much more pronounced
[2]. This complicated neurological disorder
is situated within an elaborate and diverse
landscape of stakeholders including individuals
on the spectrum, families, researchers, health
care practitioners, clinicians, therapy and
service providers, educators and policymakers.
In BC, once a diagnosis is confirmed, families
accessing autism funding must learn to navigate
acomplex system of therapies and supports and
many struggle to find and access evidence-based
research and information. They are often left
to their own devices to make critical decisions
about where to invest their money, trust and
time knowing that each delay could impact the
efficacy and benefits of early interventions [3].
The Pacific Autism Family Network (PAFN)
is a new centre and network of support for
individuals with autism spectrum disorder and
their families across British Columbia. Their

vision includes the creation of an environment
where autism researchers and clinicians can
come together to bring current, evidence-led
best practices to families and adults living with
ASDS [4]. In this spirit, the Health Design Lab at
Emily Carr University of Art + Design has been
collaborating with the Pacific Autism Family
Network (PAFN) since 2015 to gain a better
understanding of the communication challenges
and research needs of families in the BC ASD
community through generative design research
and co-design [5].

A common phrase in the ASD community is
often recounted, “If you have met one person
with Autism, then you’ve met one person with
Autism”. Autism is a spectrum disorder, as such
each diagnosis comes along with a unique set
of traits and qualities ascribed to an individual.
Each person’s needs, care plan and experiences
are quite unique. As a result, there is a diverse
range of stakeholders, as well as information,
services and resources available which families
must navigate. Underlying the work of the
Health Design Lab with the PAFN over the past 3
years has beenakey question: How might design
(and designers) foster communication and
enhance knowledge exchange between diverse
members of the Autism Community, to better
support families?

This collaboration has undergone three
distinct phases, each of which has illustrated
different ways in which designers can support
and facilitate social innovation. Beginning in
2015, the Health Design Lab first collaborated

with PAFN in an exploratory research phase to
understand family needs in relation to Autism
research. In 2016, we moved towards a more
generative research phase, using co-creation
workshops to facilitate dialogue and ideation
between families and researchers. Most recently,
in 2017 we transitioned into a more concrete co-
design phase to conceptualize a web-platform
design that will address the needs of families
uncovered through the initial phases of work.

PHASE 1: EXPLORATORY RESEARCH
2015/2016

The first phase of collaboration between the
Health Design Lab and PAFN sought to gain
a family-centred perspective regarding the
needs of families and individuals with asp,
and an understanding of how they viewed their
needs connecting to existing and new areas
of ASD research. This was achieved through
the facilitation of eight co-creation workshops
with families and individuals with asp, led by
the Health Design Lab team, as an exploratory
participatory design research process. These two
hour co-creation workshops involved two key
activities: an abstracted road map that allowed
parents and adults with Asp tovisually articulate
and express their personal ASD journey, and a
wooden block and string exercise that allowed
parents to physically show where they saw their
personal needs connecting to areas of research.

During the first activity, an abstracted road
map with traffic signs acted as a platform
for participants to tell their stories including,

- FH ODO oO DM