Meet my classmate David Mahmarian. When David’s younger brother Paul was just 2 years old, he was diagnosed with severe autism.
David’s parents explained to him that Paul might not ever be able to speak. Since then, he’s always been trying to find innovative ways to communicate with him.
When Paul was diagnosed in 1992, the rate of autism diagnosis was 1 in 5,000. Today, it is 1 in 68, with about 25 percent who are nonverbal.
About 6 years ago, Paul started learning how to navigate an iPad application to help him communicate. It was at that moment that David began to pursue interaction design, with the hopes of someday creating a better product that could help people like Paul communicate. Since embarking on the Interaction Design program at SVA, he’s dedicated his research to this topic.
David quickly found himself frustrated. By focusing on autism in the majority of his class projects, and even trying to build prototypes to test his concepts, what David found was a growing sense of being lost, instead of greater clarity. Instead of focusing on improving communication between autistic individuals and their family members, he was now unsure if communication for nonverbal individuals was the right issue to tackle. Instead of creating a better-designed app, he now questioned if apps were even the right format to the solutions, and if improving the UI design was necessarily the best approach. As David tells it, these questions arose out of a heightened focus on different aspects of the design process such as research, empathy mapping, and an exploration of all the different facets of interaction design.
I’ve watched him struggle through these questions as he tried to design for Paul. It was during one of our conversations that we realized: why don’t we just open these questions up to the people who have done it before? Why isn’t there a ready source of guidelines and frameworks for approaching designing for autism?
Designers for Autism
The more we look, the more we’re finding that for the longest time, the dominant conversation in the autism community has revolved around therapies and medical researchers. This is a point that was clearly argued by Steve Silberman in his book Neurotribes, which made it to all sorts of book lists last year. We have only recently stopped emphasizing how to train autistic people to be like us, and started thinking about how to create things that empower them to be comfortable in their world, and play to their strengths.
We think there’s a big opportunity to bring together people who have been designing everything beyond therapies — architecture and environments, hardware, software, apparel, graphic communication — to share what they have learnt and how they’ve crafted a process unique to this particular audience. And there are many ways that we can do this: through a big event, or through smaller workshops, discussions, or content creation.
We want to organize an event to bring together designers who have created products and services for the autistic community to share their learnings.
It wouldn’t be a stretch to say that designers and the autistic community are perfectly suited for one another. On one hand, we have a group of people — autistic individuals — who experience the world in a wholly different way from everyone else. On the other hand, we have designers, whose whole job is to be a champion for users and to have deep empathy for the individual’s experience. One thing to note here is that, when we say “designers”, it might mean anyone that has taken a crack at creating something to benefit the autistic community. It could be a parent, or an educator — they don’t have to declare themselves designers in order to have done significant design work.
Embedded within this desire to bring designers together is a broader question we want to test: could a whole design discipline be established around designing for the autistic community? Can we call it “autism design”? While organizing an event would be a great start, what would really excite us is to see participants take the connections they’ve developed and learnings they’ve exchanged, and push this discipline further. Perhaps a set of frameworks for autism design could even develop out of this.
It is really important to us that the autistic community becomes a big part of this discipline, perhaps even taking on a leadership role.
What’s really exciting is that we’ve found voices emerging recently within this field. Many of these voices have come from the architecture space. A recent Fast Company article details the insights that the architects at daSilva Architects gained in their work on the new Center of Autism and the Developing Brain (CADB). Magda Mostafa in Cairo has spent years doing research to craft her ASPECTSS index for evaluating autism-friendliness of environments. Outside architecture, Core77 and Autism Speaks partnered in 2011 to hold a design challenge called Autism Connects that attracted submissions from students in over 30 countries. And TechKidsUnlimited, led by Beth Rosenberg, recently released an app, LOLA, that was created by autistic individuals, for autistic individuals. The time is ripe to connect everyone to share the knowledge that they have built up from all these projects.
Help us out!
In a way, we’ve replaced David’s questions with new questions. Should we put together an event, what would be the right format for this event of ours to take? What are the desired outcomes of this event? Which fields of design should we start our conversations in? Will we garner enough interest in this community-building effort? Which stakeholders are we involving: autistic individuals, family, therapists?
The only way we’re going to find answers is to get out and talk to people who have done this before. You can help us find them!
We especially need advice from people who:
- Have created a product or a solution for the autistic community
- Are stakeholders in the autistic community, and are interested in design
- Have successfully crowdfunded events
- Have evangelized design within sectors and communities where design has previously not been a priority
Know anyone who might be interested to talk to us? Please please send them our way: you can reach David at firstname.lastname@example.org (Twitter: @dmahmarian) or me at email@example.com (@kohzy). You can also subscribe to our mailing list to stay informed as we move ahead with our event: www.tinyletter.com/designforautism.