FOR PACIFIC AUTISM FAMILY CENTRE

How to speak to autism — discovery through design research.

Partnering with the Pacific Autism Family Centre and the Personalized Medicine Initiative, ED&I conducted a design research workshop to collect the perspectives, needs, and goals of the autism spectrum disorder (ASD) community.

The insights and recommendations gathered from the workshop informed how visual and verbal communication could better serve and resonnate with the ASD community. The strategy would lay the foundation for the eventual brand identity design and direction for the research initiative “iTARGET Autism Spectrum Disorder”, a collaborative research initiative bringing together expertise in clinical, genetic, neuroscience, and microbiome research to provide improved, individualized therapies for people with ASD.

ED&I developed a new title for the project — Inform Every Autism. This title speaks to the academic research that is uncovering causes and treatments of ASD with an interdisciplinary and big-data approach. “Every” works on many levels — it implies the individualization and uniqueness of people living with ASD, uses a non-linear interpretation of the spectrum, and alludes to the collaboration of specialists, researchers, scientists, and clinicians that are involved in the initiative.

The Client

Pacific Autism Family Centre

Year

2017

Brief

Research and establish communication strategies that would engage families affected by autism spectrum disorder.

Solution

A design research workshop and research findings synthesis that provided the foundation for a communication strategy, in alignment with the goals of stakeholders and autism spectrum disorder advocates.

Industry

Social Impact

The workshop exercises were aimed at discovering how we can speak about ASD in a way that is appropriate, meaningful, representative, and authentic. We aimed to get an honest understanding of the verbal, written, and visual language that would resonate with the ASD community.

By incorporating research exercises into the early stages of the design process, it lets us “poke holes” at our initial ideas and assumptions, and persuades us to depart from existing patterns and ways of thinking. Most importantly, it helps us build a first-hand understanding of the people that we are designing for.

In the design process, we want to create opportunities to move out of a strictly direct problem-solving mode, one that can be riddled with personal perspectives and assumptions. The conversation is therefore brought into a more woolly space, where we can tap into the dreams, hopes, and worries that underpin our behaviours.

WORKSHOP ACTIVITIES

Participants engaged in activities with evocative materials, designed to reveal emotional motivations, hopes, and concerns from those with first-hand knowledge of life with and around ASD.

Who You Speak To

Five Why's

Collage

The Future

Read The Signs

The goal of the workshop is not accuracy or correctness, but the creation of a space to diverge, digress, and make mistakes — a space to challenge and uncover assumptions and misconceptions.

ELICITING CONVERSATION THROUGH A DISCOVERY WORKSHOP

Workshop discussions captured how parents set goals for their children and for themselves. They captured the lives they want their children to lead and the work required to prepare their children for each step of their development. The workshop exercises also elicited discussion around the challenges facing families in their roles as caretakers of individuals with ASD, and how they relied on an extended community to create a safe space for their children to mature and adapt to adulthood.

SYNTHESIZING OUR DISCOVERIES

The workshop produced pages of verbal transcripts, images, and language examples. In order to ‘map it all out’, we displayed the individual words, thoughts, and ideas on a wall for a group discussion. Through this mapping, we could begin to identify themes and better understand the space in which we were working. It is this act of ‘making sense’ of the expansive information that drives innovation.

The research ideas became shared and tangible when they were externalized collaboratively. This allowed us to discuss, define, embrace, or reject them. These ideas then became part of a group synthesis process that would create the foundation for the design.

When discoveries are externalized and sorted, the mess begins to be reduced and we can begin the task of seeing explicit and implicit relationships, and drawing out content connections. The shared process of organization and clarification provides an overarching understanding of the design space.

RESEARCH FINDINGS

The results of this analysis included the frustrations about public lack of education on the topic of ASD, the problem with labels of autism, the limitation of the ‘spectrum’ metaphor, and the support lacking in transition periods, especially for adults.

We grouped and organized these findings by discovering what came to us after, what kept resurfacing, and what the deeper insights were. Bundling ideas takes us from individual concepts to concrete ideas. It’s a game of mix and match, with the end goal of putting the best parts of several ideas together to create the big idea. To do this we: mapped out what their needs were to hit at language that would resonate on a practical, social, and emotional level; identified key ideas that would be appropriate and inappropriate for communication; and created a strategy to merge the practical and emotional needs of the end user, the client, and our process/approach.

We evaluated our findings in parallel with the business plan objectives in order to clarify a strategy that aligns the goals of the stakeholders with the findings of our workshop and the needs of the advocates. The result of this synthesis was our ‘how’. This defined both our approach as well as the end results, and was made up of three driving concepts: empowerment, connection, and individualization.