Working with an Autism Company to ensure that research in Autism is being connected to family needs through co creation. Parents engage in two different activities in order to find out what the key areas they would like research to focus on. Around 12 different co creation session will be run in order to determine how research should be organized if considering various parents needs for themselves and their children with Autism.
Jonathan Aitken, Director
Research Design and Analysis:
Deborah Shackleton, Dean, Faculty of Design and Dynamic Media
Jacqueline Kler, Operations Coordinator
Leading co creation sessions, assisting with presenting design direction to stakeholders, ideation of co creation activities, developing keywords from medical papers, creating quick SolidWorks models to illustrate concepts, and creating quick prototypes. Working with Deb Shackleton to develop themes which represented a combination of research and families. Also, I was part of data visualization team which took the affinity maps and turned them into diagrams which can be understood by researchers and families who have children with autism. My role in the data visualization was working on the UI/UX and communicating my designs to the coder.
Data Visualization Team:
Lauren Low + Rachelle Lortie
Prince George Summary
Three sessions were held in Prince George with a total of six parent participants. Parents had school aged children and one parent had a young adult with ASD. They expressed their gratitude for the opportunity to be able to talk about their struggles and frustrations with others; and appreciated having the opportunity to contribute their voices to research.
All were curious about how they could access the project results to see how their contribution will be making a difference. Though not asked specifically about the PAFC, they were enthusiastic about the idea of their community being able to access resources from a central hub.
The parents enthusiastically embraced the collaborative process the map activity provided. One of the key insights was that every participant wanted a different colour marker so that we would be able to represent their individual stories. This theme was repeated amongst all sessions – there seems to be no consistent path that families and children take with ASD, each experience is unique. When the parents saw the categories which were proposed for them to work with, they indicated that some of them were not as relevant to them. For example, the parents who had younger children were not as interested in transitioning to adulthood issues, while for others this was the main area of concern.
The blocks activity provided a space for the participants to physically visualize their thoughts. In general for these particular sessions, most of the blocks clustered around the category of life skills. This was the area these parents felt was the most immediate area of need. Parents with young children expressed concerns about how their children were going to cope as adults without a parent. In one session, participants indicated that all of the needs are interrelated and they used the string to show an intricate web of connections.
This interconnectedness was important to this group – they felt it impossible to separate one need from another. Their children’s needs can not be separated. A key insight about one of the more introverted mothers is that the blocks allowed her to fiddle and occupy herself with an object while she talked and explained her journey to us. The blocks allowed her to open up about not wanting to be judged for her choices in raising her children; support groups tended to cause her stress and guilt. For a mother with a young adult on the spectrum, the blocks activity allowed her to open up about the social issues her children were going through such as dating and finding job support.
Affinity Map Results
One of the strongest areas of need indicated by the group was wanting a clear model for how to navigate and understand research, and to see how it connected to their needs. Parents specifically mentioned: use of layman’s terms and plain language to clarify the meaning behind research projects; a desire for professionals to be better informed by research either access to information for parents/caretakers and research focusing on treatment.With the already overwhelming journey that these parents go through, it was clear that information needs to be simplified to accommodate a steep learning curve.
Parents wanted more opportunities for their children to learn and grow. They wanted to celebrate what heir children could do and build from there, rather than being constantly reminded of what the could not do. Parents wanted to see more research into motor and behaviour skills. Their children needed to learn to manage themselves in different environments such as school.
For this to happen, parents felt that having support from their local community was crucial for developing a safe environment in which their children can grow and mature. Specifically inclusion and understanding where qualities their children must feel in order to progress.
Another key need parents expressed was in the area of language development. Language development consists of speaking, reading, writing, and language skills. Being able to communicate socially is important for children to be able to manage their daily lives on their own. Suggestions were made for advanced writing and printing programs.
A need for greater family support was discussed, including help with financial management as well as respite care. When their children were diagnosed, families sometimes needed to make radical shifts for financial reasons. In one case, a family had to split up for a period of years to get care for their child in another province. This shift affected their leisure time, location, and priorities.
Most Recent Prototype
This is the most recent prototype of the data visualization. This
visualization explores how movement can keep a person engaged with
a product and prompt them to click on area of the screen where they
have not yet explored.
Key Insight 01
Currently, the nodes eventually stop and are static a few seconds after the page
is loaded. Continuous movement of the nodes would let users know that they are
looking at an interactive graph.
Key Insight 02
When dragging a shape, it appears then reappears in it’s new position.
A tool tip which follows the shape and does not disappear would allow
for an interaction which is fluid.