On Designing Events for the Autism-Friendly Design Community: Five Personas

How treating event planning as designing helped bring clarity to our process

Personas are part and parcel of the process for any designer. You do your research. You ask your target audience questions, and identify traits that allow you to group audience members that have similar ones together. Members of each group might relate to each other in interests, in needs, in concerns, or in beliefs. You then craft a persona that is representative of this group, and circulate a set of personas to the team so everyone is on the same page about the types of people you’re working with.

This all seems pretty intuitive. At least, it’s intuitive when you’re working on something that you have clearly identified as a design project.

As I’ve discussed before, my friend Dave and I are building a community around designing for autism (Kickstarter campaign here.) Long story short, we’re organizing a series of meetups to bring together designers and innovators to share their learnings from creating solutions for the ASD community.

How do you approach the opening stages of meetup planning? Our initial instincts were to find out whether these were events worth pursuing. We talked to designers who were already working on solutions for the autism community. Did they understand what we were doing? Would they be interested in attending? As we spoke to more people and read more, our internal discussions started feeling scattered and confused. There were so many disparate needs, sometimes contradictory, that we needed to address. And we were often worried that something we did to engage one person might offend someone else.

What we didn’t do right from the start, and what we should have done, was to view this community-building effort more as a design project.

It took us several weeks, and multiple comments from advisors, before we came around to seeing it as a design project. Once we realized that we were designing a series of events, the natural design process kicked in. Synthesize our findings. Paint our target audience as representative personas. Use those personas. Refine them whenever we learn something new.

The first personas we arrived at were derived from our own profiles. Dave’s brother Paul is autistic. Because of that, Dave has a more intimate understanding of what it is like to have an autistic family member and is motivated to help others in the same situation (individuals with ASD and their caregivers.) Thus the persona of the Stakeholder emerged. The Stakeholder is often a vocal advocate for the ASD community. They have personally experienced the difficulties that individuals with ASD and their families encounter, and noticed issues with historical attempts to help the community, and this might lead them to be (rightfully) skeptical of any new initiatives to help.

As for myself, while I was previously aware of the condition, up till a year ago I did not have as intimate an understanding because I was an outsider to the community. I recognize the need for better design within the community, however, and am eager to learn as much as I can. I want to help, and I know others like me are too. Collectively, we could call this group the Designer Outsiders. We are interested in creating solutions for the community, and are coming from a place of unfamiliarity with the condition and the community. Designer Outsiders would like to find resources and guidelines that help them create better solutions, but might not know where to start. Outsiders might be coming from a broader interest in inclusive and universal design.

The individuals we approached initially to evaluate our efforts share enough traits to be recognized as a group of their own. The Experienced Designer is someone who has been creating products and solutions for the ASD community. They hail from any one of a range of design disciplines — tech, apparel, architecture, toys and gaming. They were probably inspired to help the community from a personal connection: perhaps a family member has autism, or the designer used to work as a therapist. (This would mean they made the move from being a Stakeholder, to being an Experienced Designer.) They have refined design guidelines over time after doing research and testing, and may be happy to share what they’ve learnt.

Looking at this initial slate of personas, there is one clear group missing, and that’s the person we’re all designing for, the Individual with Autism. It’s hard to generalize this person because autistics individuals fall on a spectrum; there’s a line that goes: “if you know one autistic person, you know one autistic person.” Every autistic individual is different, experiencing different types of sensory overload and exhibiting different modes of thinking. Autistic adults, in particular, have been underserved as much attention has been focused on children with ASD. More recently, many autistic individuals have become very vocal advocates for their peers, and (rightfully) argue that any discussion around how to help the autistic community should not exclude the autistic individuals themselves.

For a while, that was it in terms of the personas we had. We had considered people such as speech language pathologists and medical researchers as part of the Stakeholder group. After more conversations, however, it became apparent that these roles shared common traits and beliefs that convinced us that they should be in a group of their own. We began to see them as variations of the Expert. The Expert isn’t an individual with autism nor a caregiver, but has deep experience studying the condition. They are often up to date on the latest findings in the medical research field.

So here are the personas that we have so far: the Experienced Designer, the Individual with Autism, the Stakeholder, the Designer Outsider, and the Autism Expert. It’s important to note that these profiles are generally representative: they don’t describe any one person exactly. We’re always refining them as we learn more from our conversations. As numerous critics have pointed out, there is a danger that personas lead to a false sense of understanding. We note this criticism, and would never point to ours as evidence of complete knowledge.

But back to how they can been useful. Now that we have these five personas in front of us at all times, we’ve been able to evaluate anything we do by how it affects each persona. When we wrote the copy and video script for our Kickstarter campaign, it was helpful to put ourselves in each persona’s shoes and read what we had written. When we crafted the rewards, we could think about which rewards appealed to which persona. Nicole Fenton, who’s teaching us writing write now (haha), strongly recommends we keep a particular person in mind as we write; this helps us take on a tone that is clear and appealing to that person. Dave and I now have 5 characters we can pick from.

Our Goals

Perhaps where the personas have been most useful is helping us think through what our preliminary goals are for this community building effort. While we could craft an overarching goal, deciding what are our goals are for each persona allows us to set a clear direction for how we interact with each new participant.

We want to catalyze knowledge sharing and collaboration amongst the Experienced Designers. We want to learn from the Individual with Autism and the Stakeholder, and empower both to become design thinkers themselves. We want the Outsider Designer to easily find resources and help to put them on the path towards creating better solutions for the community. And we want to synthesize the findings that the Experts are continuously generating.

This has been an eye opening exercise into how projects that wouldn’t have been seen as design project can actually become more manageable if we brought design process into the mix.

The process of human-centered design has been refined over years of evaluation and debate. To put it in an over-simple diagram, the process looked something like this:

The event-planning process Dave and I are currently a part of could be thought of in the same way, except that we ourselves haven’t had the luxury of decades of process refinement. Instead, it’s looking something like the diagram below: plenty of opportunities for us to stumble, but if we are thoughtful about being self-critical, our process can only improve.