how to speak to autismA DESIGN WORKSHOP

The Project &Design Space

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Synthesizing Our Discoveries

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The Workshop

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Strategy &Plan Forward

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WorkshopActivities

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Educe was asked to create a communication strategy for the itarget Autism Spectrum Disorder (asd) initiative. Educe’s work is focused on building both an understanding of the project and of the community affected by asd. This work will create a shared frame-work of verbal and visual language to facilitate, recruitment into, and a broader understanding of the itarget asd initiative.

iTARGET ASD

itarget asd is a collaborative research initiative that consists of a core team of 21 researchers at the University of British Columbia and Western University, and brings together expertise in clinical, genet-ic, neuroscience, and microbiome research. itarget asd presents an individualized approach to autism using genetic and environ-mental targets. The initiative aims to identify the earliest causes, to define the most effective therapies for children, and find out why those therapies work.

The Project &Design Space

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Workshop insights

Synthesis Print collateral

Identity

Web

Business plan

Workshop

Brief

Design

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Left: A workshop involving end users kicks off our design process. The workshop supplements the business plan with the human experience and grounds our understanding of the needs that we are addressing through the design.

PACIFIC AUTISM FAMILY CENTER

Through partnerships with the Pacific Autism Family Center (pafc) and the Ministry of Child and Family Development, itarget asd is creating a highly beneficial collaboration between clinicians and families in BC. The family-centric approach to integrating commu-nity and research makes itarget asd Canada’s first fully integrated initiative to uncover the underlying causes, life-course changes, and treatment outcomes of asds.

Given the key partnership between the Life Sciences Institute (lsi) research projects and the pafc it is important for the designers at Educe to gain insights into communication that will be relevant and useful for both partners. Our final objective is to incorporate visual and verbal language and communications strategies that will span across identity, web and campaign development.

OUR APPROACH

At Educe, we are committed to applying human centred design processes in our work. Human centered design is an approach that directly involves the end user-group into the design process. Involv-ing end user participants in the initial process allows us to reframe the question and garner a better understanding of the human needs and solutions that we are addressing through the design.

Our use of human-centered design reflects the way we believe meaningful design is developed. Here’s what we know: Empathy is fuel for good design. We want to access the real stories so that we can genuinely feel what is behind the design need. Bringing the end-users into the making process allows new thinking, it keeps us from indulging in our own patterns and ways of thinking. We can learn more from mistakes than immediate successes, incorporat-ing research exercises into the early stages of the process allows us to proactively “poke holes” in our initial ideas and assumptions, resulting in more successful and meaningful design results. We believe in leaving room for surprises!

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This particular initiative (itarget asd) requires a strategy that is sensitive to the end users. By starting the design process with a workshop for family members and specialists supporting people on the spectrum, we could incorporate different activities and engage a real audience in the reframing of the problem space. In this way we can supplement our own understanding of the people affected by asd, by gathering insights and experiencing a first hand understand-ing of families and experts affiliated to Autism Spectrum Disorder.

The objectives for the design research included how we might speak about autism in a way that is appropriate, representative, meaningful, and authentic to people in this community? We get here by understanding the verbal, written and visual language that resonates with this user-group and understanding the emotional motivations, roles, gazes, triggers, barriers, frustrations, hopes and concerns of this community.

The workshop contains a set of design research exercises creat-ed to trigger conversations and proactively tease out and poke at assumptions regarding the language around the Autism Spectrum Disorder. These exercises are used to trigger verbal and visual dia-logue. Reframing the key question ‘How might we speak to autism?’ within different activities allows for new and unexpected outcomes. The goal of the workshop activities was not accuracy, right answers, or aesthetic design input. The activities were designed to trigger conversations, and to create a space to diverge and digress—to make mistakes—so that assumptions and misconceptions around the topic of asd could be challenged and uncovered.

TheWorkshop

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Above: Design activities with end-user workshops are efficient methods to get the process into unknown spaces, uncovering both pitfalls and opportunities for innovation.

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

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•Problem

Solve

Brief

Reframing

Method ofInquiry

ABSTRACTZONE

CONCRETEZONE

“let things go allover the place”

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WorkshopActivities

ACTIVITY 01: WHO YOU SPEAK TO

Purpose: To understand the barriers and frustrations that occur around the communication of the topic of autism to a variety of different people, and when and how these occur.

Description: Participants made a sample list of people and the situ-ation surrounding their daily interactions. The participants used stickers to voice on a scale of 1−4 of how confident they feel speaking to them about autism, and why?

Our Findings: We found that there were many frustrations around the topic mainly due to lack of education and misconceptions from the public that make the conversations awkward:

“Autism” is an umbrella term for many different individuals with very different characteristics and needs. This “spectrum” labelling is linear but individuals have higher capacity for some things and lower for others in many different combinations—not necessarily somewhere on a sliding scale.

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Who You Speak To: Make a sample list of people that you have encountered in the last month and the situation surrounding your interaction. Use the stickers to rate each person on a scale of 1-4 of how confident you feel speaking to them about autism. Why do you feel this way?

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Why?

Why?

Why?

Why?

Why?

Why?

Why?

Why?

Why?

2. 3.

4. 5. 6.

7. 8. 9.

You will need: · rating stickers· pen or pencil1

not confident

somewhat confident

very confident

confident

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ACTIVITY 02: FIVE WHY’S

Purpose: To gain insights on the motivations and trig-gers that lie behind the actions of someone advocating on behalf of individuals with asd, To understand when and where it is necessary to advocate for the individual.

Description: Participants answered a series of questions probing at the “why” in order to dig deeper into the mo-tivations and incentives of the advocates.

Our Findings: We found out that transition periods were a critical point where the individual needs advocacy and support. In addition the lack of provincial support after the age of 19 limits critical support in the areas of employment, connection to community, knowledge, education and voice. Transition periods and adulthood often leave the advocate fighting these battles alone.

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d) How do you think personalized medicine (healthcare based on the unique genetic and molecular blueprint of each individual) may be helpful for your friend/family member/patient? How might it be helpful for the future?

2Five Why’s: Begin by answering the first question and continue unfolding the paper and the topic by answering the question deeper with five consecutive “why’s”.

You will need: · pen or pencil

a) In what area of your friend/family member/patient’s life do you feel you have to take responsibility or a role of advocacy?

b) What is something that would make you NOT sign up a friend/family member/patient for a program?

c) When is it important to find solutions/resources for your friend/family member/patient to cope?

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Collage: What do you see as required to create a happy, safe, positive, interesting, evocative, engaging environment for your friend/family member/patient with autism? Visualize it with a collage.

You will need: · materials envelope· scissors

· markers· pen or pencil 3

( fold me open → )

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ACTIVITY 03: COLLAGE

Purpose: To elicit visual ideas and generate a dialogue on what it means to live with and around autism on an emotional, physical, practical, social, and individual level.

Directions: We asked the workshop participants to show us what a happy, safe, positive, interesting, evocative, engaging environment for a person on the spectrum looked like. We provided images, words and paper materials and asked them to make a collage.

Our Findings: We found that this exercise was a really good trigger to learn about who the participants were advocating for. The collages had many things in common including the use of positive language and specific imagery. That said, the dialogue born of this exercise was an equally good reminder that each of the individuals was spe-cific and unique, as are the problems they face.

Above: Having the participants make and explain a collage, was a method that engaged the group as a whole and gave the group an understanding of how diverse their values and thought processes were.

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ACTIVITY 04: THE FUTURE

Purpose: To gain a better understanding of an ideal future for indi-viduals on the spectrum, and which barriers are in the way.

Description: Draw, write, or pick images that can illustrate the hopes, dreams, fears and concerns about the future of individuals on the spectrum. Suggested topics include relationships, education, school work, family, independence, etc.

Our Findings: This exercise helped us understand what drives the advocates (fear) and what coping mechanisms exist for them to provide protection, but also support for the individual to flourish and grow. Transitional moments continued to surface as a concern along with the practical considerations of employment, indepen-dence, growth, ability, citizenship. In addition, this exercise drew out the deeper emotional concerns around love, affection, happi-ness, friendship, optimism, support, understanding and connection.

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HO

PES

& D

REA

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FEAR

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CO

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ERN

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The Future: Draw, write or pick images that can illustrate hopes & dreams or fears & concerns about the future of your friend/family member/patient. (Suggested topics: relationships, education, school work, family, independence, etc.)

You will need: · pen or pencil· materials envelope

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Read the Signs: Rapidly write down the first 3 descriptive words that come to mind for each icon onto the corresponding stickers. Try to describe what each icon evokes, rather than simply what it is (ie. shelter vs. umbrella).

You will need: · sharpie marker5

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ACTIVITY 05: READ THE SIGNS

Purpose: To determine the connotations and relevance of existing iconography and descriptors associated with autism.

Description: Participants were asked to rapidly write down the first 3 descriptive words that came to mind for each icon on the page. They were then asked to place these terms on a page from most (center of page) to least appropriate (edge of page) on the topic of asd by plac-ing them on a chart.

Our Findings: This exercise led to discoveries in both the visual and verbal communications space.

Imagery that was “iconic” for autism (rainbow, puzzle piece, etc.) had a polarizing effect. Generally these images were placed both in the very middle of the chart but also at the very periphery. This led us to the insight that maybe one logo or wordmark would not be the solution, but rather a visual system or something more abstract would be appropriate. Hands and hearts (and other human centred icons) were seen as appropriate, and elicited descriptives like shar-ing, support, help, collaboration and community—potential key driving words for the design.

Language that was positive included: sharing, diversity, support, help, celebration, team work, inclusion, friendship, collaboration, support, complete, connection, compassion, join, joining, together, puzzle, assist, hope, complete. Language that was considered nega-tive often made connotations towards a lack of connection/commu-nity and included: alone, confusion, isolation, complex, machine, lost, unfit, disconnect, target, seperate, broken, different, puzzle, different, misunderstood, collide, fragmenting.

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THE PROCESS

The workshop/user research session produced pages of verbal transcripts, images and language examples. In order to “map it all out” we laid out the words, thoughts, and ideas that came up in the workshop and put them all up on a wall for a group discussion. Through this mapping we can begin to identify themes and better understand the space in which we are working. It is this act of ‘mak-ing sense’ of the information drives innovation.

Once we have made sense of the information we can move towards a more collaborative situation and include external par-ties in the dialogue. Building relationships around the project and identifying patterns in the information allows us to discover cohe-sive elements and make connections that stem from the workshop results to the real world outputs. This is about creating an external view of things and at this stage it is less important to be “accurate” and more important to give some abstract and tangible form to the ideas, thoughts and reflections.

The ideas become shared and tangible when they are external-ized collaboratively. This allows us to discuss, define, embrace or re-ject them. The research ideas then become part of a group synthesis process that creates the foundation for the design. When the discov-eries 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 organi-zation and clarification gains us a big picture understanding of the design space.

Synthesizing OurDiscoveries

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Right: Pulling out words and phrases from the workshop activities helped us to map out larger ideas and find connections.

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THE FINDINGS FROM THE SYNTHESIS PROCESS

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

Now we group and organize these findings by discovering what came to us after, what kept resurfacing and the deeper insights. 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 lan-guage that would resonate on a practical, social, and emotional level, identified key ideas that would be appropriate vs. inappropri-ate for communication, and created a strategy to merge the practical and emotional needs of the end user, the client, and our process/approach.

We evaluate our findings in tangent with the business plan ob-jectives and our secondary research, in order to clarify a plan that aligns the goals of the stakeholders with the findings of our work-shop and the needs of the advocates.

The result of this synthesis is our how. This defines both our approach as well as the end results. Our how is made up of three driving concepts: empowerment, connection, and individualization.

Left and Right: The ideas become shared and tangible when they are externalized collaboratively. This allows us to discuss, define, embrace or reject them. It may look messy, but it is an important process of aligning the understanding that forms the basis for meaningful design to emerge.

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Our three driving concepts: empowerment, connection, and in-dividualized, now need to be explored and articulated through a communication strategy, a visual and verbal identity and a digital platform.

EMPOWERMENT

This concept is dynamic and inspirational with positive and flexi-ble language and images that invite the “user” to become an active participant. It aims toward using a visual identity that is accessible and invites participation—it can be interpreted in different ways, re-drawn and found. This concept is conversational and approachable but commanding.

Strategy &Plan Forward

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“OP

TIX

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fgan

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“La Noche Sin Techo” by Alberto Romanos

https://www.facebook.com/Discover.party

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commanding

flexible

adaptive

positive

inspirational

participatory

bold

https://www.airbnb.ca/

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“The Griffin Farley Foundation” by Merijn Hos

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CONNECTION

This concept aims to connect the community from individuals and advocates to the scientists and clinicians. It also reflects the overall strategy of the itarget project, as a fully integrated approach look-ing at environment, genetic and microbiotic targets around asd. The language around this concept is conversational and inclusive and addresses the relationship between elements while speaking inclusively to a group. It is based on the ideas of bridging, merging, creating patterns and relationships by combining different pieces. This can include making use of community-based web interactions through use of social media, crowdsourcing, commenting, voting, etc. This concept ensures that the whole becomes greater than the sum of it’s constructed parts.

conversational

relationships

sum of parts

playful

patterns

bridging

merging

combinations

“The Griffin Farley Foundation” by Merijn Hos

“Cerovski” by Bunch. https://www.behance.net/gallery/14336777/Cerovski

http://designspiration.net/image/3677311090152/

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INDIVIDUALIZED

This final concept addresses the conundrum that despite shared goals and frustrations, each person is unique and so is their battle. Verbally this concept will focus on personalized stories allowing individuals to identify themselves therein. Visually this concept ensures a system that can facilitate many different versions of an identity that can tailor to a variety of situations. This is about an adaptable experience and aims at a portal that can be personalized and altered to be yours (think of a google news home page) bring-ing the advocate the most relevant information and access for their specific needs.

http://www.awwwards.com/gallery/8703/

“Whitney Museum Identity” by Experimental Jetsethttp://cargocollective.com/DPeacock/Taberna-Retail

“Medicine Package Design” Dori Novotny 2012

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unique

customized

adaptive

system

bright

targeted

honest

authentic

www.modern-practice.com

www.kellianderson.com

http://www.awwwards.com/gallery/8703/

© EDUCE design & innovation inc, 2015

Vancouver, BC.

www.educedesign.com

in partnership with:

Pacific Autism Family Center & Life Sciences Institute UBC