Introduction
Autism spectrum disorder (ASD) is the most common neurological disorder in children and is impacting our society in profound ways. ASD now affects approximately one in 68 births. Given this prevalence rate, it is estimated that there are 60,000 people affected by ASD 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 it is an integral component of relieving 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 B.C., 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. 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 B.C. 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 been a key 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 ASD, 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 ASD, 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 ASD to visually 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, “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 development 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 families together in order to challenge the existing communication paradigms and to inspire both stakeholder groups to participate in identify 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 activities 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 go to in order to find the information they were looking for. The board had 24 suggested sources (such as: clinician, social worker websites, books, conferences, etc.) to choose from, and participants were also encouraged to add new points in case they didn’t find the ones they needed. While each family member visualized their journey using string, the other participants listened and conversation about these sources and their value naturally occurred. Researchers also participated in the string mapping activity. Using blue string, they mapped the sources where they typically disseminate their research and explained their process and rationale for dissemination. After all participants finished mapping their personal routes, they were asked to engage in a group discussion about the pros and cons of the different points of access [9].
In this activity we were interested in identifying opportunities through individual narratives but also in fostering a rapport and discussion between the groups. Visually, one could see a striking difference between where knowledge was being accessed and where it was being disseminated. For example, researchers typically disseminate to academic journals and conferences, where as families get a lot of information from other families and online sources. The string created a useful visual and kinesthetic task which triggered rich conversation. What emerged from this activity was a new framework invaluable for understanding how the transference of knowledge was taking place. We caught glimpses into different perspectives about knowledge acquisition and saw tension as a result of existing systemic constraints, such as current research funding models, which do not inherently support or encourage public dissemination of information.
Following this, we moved onto an interviewing and brainstorming activity which focused on generating ideas for improved communication and knowledge exchange in the future. Here researchers and families were able to create a collective vision for the future based on an improved understanding of each other’s perspectives and needs. Based on the insights gathered from these workshops, we developed a series of design recommendations for the PAFN in order to improve communication and connect parents to research, at the right time and in the right context. The most pertinent proposed outcome was a web platform which could compliment the face-to-face services at the PAFN. This would serve as a digital hub where parents could access relevant and credible research in a format both accessible and specific to their individual needs, connecting them with evidence-based and localized services and resources.
Phase 3: Co-Design 2017/2018
For the third phase of our collaboration, we are currently employing a co-design process to conceptualize a web-platform that will curate credible research and information for families. The Helsinki Design Lab defines the practice of design stewardship as “the art of getting things done amidst a complex and dynamic context. Stewardship is a core ability for agents of change when many minds are involved in conceiving a course of action, and many hands in accomplishing it [10]”. The third chapter of our partnership with the PAFN, which at the time of this publication is on-going, takes root in this definition. As we shift from generative research into designing and implementing, our focus has expanded beyond the interactions between ourselves and the specific stakeholders in the ASD community to a larger sphere in which we are meeting with developers, owners and operators. We are taking our findings and insights, grown from our generative design research phases, and are now striving to concretize a web-platform concept which can be actualized by the PAFN.
In developing a web platform for the PAFN, we are interjecting a new platform into an existing ecosystem of stakeholders and impressing upon them new ways of communicating. This is a challenging venture that requires both a top down and bottom up approach. The Helsinki Design Lab describes this further: “pressing ‘down’ to induce the creation or adoption of new means of directly meeting the challenges at hand, while simultaneously pushing ‘upwards’ to question the assumptions of today’s systems and create space for redesign [10].” Currently we are operating in a middle space, navigating between the desires of the intended audience and the realities of those who will be in charge of the implementation and maintenance of our design. It is important to remember that co-design as a dialogical tool and strategy is an integral part not only in the design phase, but in the execution of outcomes, bearing in mind all of the stakeholders. Moving forward we intend to continue utilizing co-design strategies with families, researches and the PAFN. These are integral tools of stewardship, and we recognize that as designers, we should work with those in positions of power to implement designs, to support this endeavour beyond our initial involvement and ensure they are prepared for pivots and feedback.
Conclusion
Over the past three years we have contended with the question: “How might design (and designers) foster communication and enhanced knowledge exchange between diverse members of the Autism Community, to better support families?” During this time our collaboration with the PAFN has undergone 3 distinct phases, each illustrating a different way in which designers can support and facilitate social innovation. Throughout this research and design process we have played a critical role as dialogic collaborators in triggering and supporting a co-design process within the autism community. In essence, we have begun to fulfil the roles of expert designers that Manzini describes: “ [expert designers] should feed the conversation with visions and ideas (using their personal skills and specific cultures), listen to the feedback from other interlocutors (as well as, more in general, listening to feedback from the whole environment in which they operate), and then, in view of the feedback, they should introduce new, more mature proposals into the conversation” [11]. As expert designers on this project, we started by listening to the community, we fed the conversation with new ideas, and we are now working to support the development and implementation of the collectively established vision; ultimately seeking to enhance knowledge exchange and support for families in the autism community.
Acknowledgements
Many faculty and students at Emily Carr University of Art + Design have contributed to this work over the past three years. We would like to acknowledge the contributions of: Jonathan Aitken (past HDL Director), Caylee Raber (current HDL Director), Deborah Shackleton (Dean of Design and Dynamic Media), and the following research assistants—Stacie Schatz, Ateret Buchman, Natalia Franca, Zora Trocme, Amanda Roy, Dina Smallman, Juliana Forero, Lauren Low and Rachelle Lortie.
Funding for this project between 2015-2018 has been provided by: Pacific Autism Family Network Foundation, Michael Smith Foundation for Health Research, Emily Carr University of Art + Design, University of British Columbia, University of Victoria, BC Institute of Technology, and BC Children’s Hospital Research Institute.
References
- [1] Pacific Autism Family Network. About ASD. http://pacificautismfamily.com/about-asd/
- [2] Fakhoury, M. Autistic spectrum disorders: A review of clinical features, theories and diagnosis. PubMed: April, 2015. doi: 10.1016/j.ijdevneu.2015.04.003
- [3] The Campaign for the Pacific Autism Family Centre: Building Potential for a Brighter Future. http://pacificautismfamily.com/wp-content/uploads/2014/04/PAFC-Case-for-Support.pdf
- [4] Aitken, J., Forero, J., Franca, N., Lortie R., Low L., Roy, M., and Smallman D. Connecting Family Needs to ASD Research in BC. Summary report 2015/2016. Emily Carr Health Design Lab: 2016.
- [5] Inform Every Autism. Research. http://informeveryautism.com/research/.
- [6] Manzini, E. Design, When Everybody Designs: An Introduction to Design for Social Innovation. Cambridge, Massachusetts USA: MIT Press, 2015.
- [7] Quoted in Brooks, S. Collective Strength and Greater Understanding through Co-Design. In Leap Dialogues: Career Pathways in Design for Social Innovation. Edited by: Amatullo, M., Boyer, B., Danzico and Shea, A. Pasadena California, USA: Design Matters at ArtCentre College of Design 2016. p. 121
- [8] Sanders, Elizabeth B.-N, and Stappers, Pieter J. Convivial Toolbox: Generative Research for the Front End of Design. Amsterdam, Netherlands: Bis Publishers, 2012.
- [9] Raber, C., Buchman, A., Franca N., Schatz, S., and Trocme, Z. Bridging Researchers and Families in the ASDs Community. Emily Carr Health Design Lab: 2017.
- [10] Boyer, B., Cook J.W., and Steinberg, M., Legible Practices: Six Stories about
the Craft of Stewardship. Helsinki, Finland: Sitra 2013 p. 7-8 - [11] Manzini, E. Design, When Everybody Designs: An Introduction to Design for Social Innovation. Cambridge, Massachusetts USA: MIT Press, 2015, p. 67