Steve Silberman’s book, NeuroTribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently, won Britain’s prestigious Samuel Johnson Prize for non-fiction writing last year. The book, a sweeping history of autism in both science and society, contains some powerful implications about designing for human cognition and what “normal” really means. Ahead of his talk at UX Week 2016, Steve talked with Adaptive Path Chief Creative Officer and UX Week host Jesse James Garrett.
Jesse James Garrett: First of all, congratulations on the success of the book. It sounds like it has really struck a chord with a lot of people around the world.
Steve Silberman: Yeah, I’m very happy to say that the book seems to have touched people from several different communities in a good place. For autistic people, I think it’s important that many of the ideas – such as the concept of neurodiversity that they first articulated – are rendered here in the larger arc of autism history. From what parents have told me, it’s been really important for them because there’s so much confusing information about autism out there, like is it an epidemic? Can it be cured? By looking at 80-plus years of autism history, I make it clear that the best “cure” for the most disabling aspects of autism is to be found in supportive parents, accommodating employers, and general changes to society that make it easier for autistic people to function and thrive in a world that’s basically not built for them.
JJG: You touched on the concept of neurodiversity, which is a relatively new idea and a different way of thinking about autism than many people are familiar with, so tell me about neurodiversity and what that word means.
SS: Sure. Well, the word was coined in the late ’90s by a sociology student in Australia named Judy Singer. Judy was a member of an early online network for autistic adults at the time that the diagnosis had become available to adults for the first time. And what the members of this community found was that all of the struggles and challenges they faced in their lives were not caused by their autism. They were caused by a society that either failed to meet their needs or directly stigmatized and bullied them for being autistic.
So she coined the term neurodiversity in the hope that it would spread through the community of people who think differently, for people with conditions like autism, dyslexia, and ADHD as a kind of rallying cry, in the same ways that phrases like black is beautiful or gay is good had spread through other marginalized and stigmatized communities and were very empowering.
JJG: The interesting thing about this to me is the way in which de-pathologizing the natural way that these people’s minds work helps to reframe the potential value of different ways of thinking for all of us.
SS: I think that’s definitely true. De-pathologizing is not just a question of being nice, either, because a consistent problem with autism research over the years is that neuroscientists will look at brains of people with autism and if they find any variations from what they’ve described as the norm, then those become deficits. But not every variation in brain structure or function is a deficit, and just because the brains of autistic people do it doesn’t mean that it’s a problem. And scientifically, very often in studies of autistic brains, the variations they’re describing are well within the normal range. So it’s actually better science not to automatically pathologize a group of people because it helps you look at your data in a more unbiased way.
JJG: This notion of building a better world for autistic people is where the work that we do as user experience designers really comes into play. What are some of the successes that you have seen in reshaping the way that the world works to better accommodate people who are not in the middle of the bell curve in terms of their neurological patterns?
SS: A very recent success story from this month is the popularity of Pokemon Go among autistic kids, and this is still anecdotal, but parents are reporting that their kids have become more socially engaged and more active in the outdoors. Being in the outdoors can sometimes be a very overwhelming experience for autistic kids, in part because both the kids and the families often get bullied or the parents get looked at askance in the supermarket. But Pokemon Go seems to be encouraging autistic kids, who often have a curious affinity for technology and interfaces, toward just getting outside and being more physically active.
But the important point is that making technology accessible results in better technology for everyone. It’s actually really baked into the history of technology. For instance, in the early ’80s, two teachers named Jackie and Steve Brand started working with Apple. They had a daughter named Shoshana who was profoundly disabled. She was nearly blind, unable to speak. She had cerebral palsy, but her parents, Jackie and Steve, were not willing to give up on her. So they met a guy who helped set them up with a keyboard that could interface with an Apple II, and then they programmed the keyboard so that it would respond with positive feedback no matter what area of the keyboard Shoshana pressed. That functioned as a reward, and the effect on Shoshana was absolutely transformative.
In fact, her mother said something that I’m going to read to you verbatim, because it should resonate through the entire high tech industry. It’s a very earnest testimony of the power of accessible technology for disabled people of any age really.
“Imagine the whole creative process opening up before you where there has never been an outlet before. Imagine suddenly being able to express your needs, your desires, when you’ve never spoken or written a word. This is a drama that makes chills go up your spine. All of a sudden ‘She can’t do this,’ became, ‘Wait a minute. We haven’t found the tool to help her do this yet.’”
JJG: If I were a designer getting ready to start a new project and I wanted to incorporate thinking about neurodiversity into what I’m doing, what are some of the considerations that come into play?
SS: As an autistic person once told me, autistic people are more different from each other than non-autistic people are, in that autistic people have a very wide range of needs, skills, and attributes. Some autistic people can’t talk at all without assistance. Other autistic people are very chatty. Some autistic people seek intense sensory stimulation. Other autistic people are very overwhelmed by sensory stimulation. So there’s never going to be a one-size-fits-all solution for people on the spectrum. But what you can do is create highly customizable interfaces, so that users can adapt the interface to meet their particular set of needs.
One of the most effective ways to have these designs reflect those different needs is to have autistic people on your development team so that they can tell you what they need or what other people that share the same label might need. It’s important to encourage diversity at the hiring level in high tech, because you get different sets of eyes with different ways of thinking behind them looking at your product, then as you make the product more accessible you make it more intuitive and more valuable for everyone.
JJG: I think one of the challenges in bringing autistic people into the development process is just trying to figure out how to work together effectively. These teams are often trying to move very quickly and are accustomed to certain styles of communication and certain styles of collaboration. Are there ways you have seen organizations be really effective in incorporating this broader range of thinking styles into the work that they do?
SS: Sure. One of the historical developments of recent decades is that even so-called neuro-typical employees are used to collaborating digitally. Most autistic people have real challenges processing multiple channels of input in social interactions, in real time, so for example, looking the person in the eye while understanding what they’re saying, while exhibiting the right body language – that is really difficult for most autistic people no matter where they are on the spectrum. But online communication and digital collaboration are the great levelers in that regard.
There was a trend for a while in Silicon Valley companies to do open plan offices but that doesn’t work for everyone. It often doesn’t work for autistic people. It doesn’t work for people with ADHD because they can get easily distracted. It doesn’t even work for garden-variety introverts who prefer to work in a quiet office. So providing a diverse range of working environments is better for everyone, better for people with lots of labels, like autism, dyslexia, and ADHD, but it’s also just better for the wide range of people who get to call themselves normal. You end up with a more diverse and resilient workforce, because a workforce that contains people that have different kinds of minds can see problems from a multiplicity of angles.
JJG: And I think it’s that multiplicity of angles on the problem that is the really exciting opportunity for us as creative professionals to be able to imagine possibilities that we might not otherwise see.
SS: Exactly. It’s nice to think of that only in positive terms, like thinking outside of the box and coming up with innovative solutions, but it can also prevent disastrous problems. There was a catastrophe in a hotel where the engineers created this visually very impressive walkway above the lobby, but when [UX Week 2009 keynote speaker] Temple Grandin, who is not only one of the leading industrial designers in her field, but one of the first autistic adults to publicly identify that way, to come out of the closet as it were, looked at it. She immediately saw that the design of the catwalk would not have been able to support the weight of the number of people who were expected to walk on it. So you can also not only think out of the box and come up with innovative solutions but you can also prevent disaster.
JJG: Wow. So where do you see all of this going? What do you think is the future of neurodiversity in design, and in the workplace? How do you see organizations evolving to address this?
SS: I see the core message at the heart of inclusion and accommodation in education and employment as giving everyone what they need to maximize their chances of success. For example, there’s a funny thing about accommodations for disabled people. They tend to have benevolent effects that radiate outward towards society, and I don’t have to be very theoretical about this at all.
Think about curb cuts in the sidewalks. Yes, they help wheelchair users get around. In a world in which there are no wheelchair ramps, curb cuts, or accessible bathrooms, being in a wheelchair is very disabling. If you make those accommodations, it’s not at all. People can go anywhere. Yet every parent who has ever pushed a stroller down a sidewalk was very grateful for the curb cut because they didn’t have to bump the baby.
Particularly in the case of autism and other cognitive disabilities, that is not the way we’ve handled it as a society. It’s as if we’ve been saying, “Who cares about wheelchair ramps and accessible classrooms. Someday science will enable everyone to walk.” We should look at it in a very practical sense, about what changes we can make in workplaces and to interfaces so that more people can participate in moving society forward.
JJG: Fantastic. Thank you so much, Steve. We look forward to hearing your talk at UX Week 2016.
SS: Awesome. Thank you so much.