EP 126: Designing with Neurodivergent People | Katie Gaudion
This week we talk about designing for diverse perspectives
Katie is a designer and researcher; she is a design consultant and Senior Research Associate at the Helen Hamlyn Centre for Design which is an Inclusive design Centre based at the Royal College of Art in London. Katie is neurodivergent (Dyslexic and Dyspraxic) and for the last 16 years has collaborated with neurodivergent people to explore ways to make their everyday lives comfortable and enjoyable. Katie has worked within a range of contexts: Supported living accommodation, mental health hospitals, garden design, healthcare services, developing design standards for the built environment and street design.
An important aspect of Katie’s PhD called: A designer’s approach: Exploring how autistic adults with additional learning disabilities experience their home environment, was to explore how to connect and engage with people beyond verbal speech. A great lesson learnt was the importance of empathy, something that can grow and develop.
Katie speaks not as an expert but as a person with lived experience and the privilege of collaborating with lots of different people.
Episode mentions and links:
Design Lab Podcast Ep 36 with Rama Gheerawo
Katie’s restaurant rec: The Jetty
Follow Katie: Twitter | LinkedIn
Episode Reflection:
I really loved the conversation this week between Bon and Dr. Gaudion. Conversations like this one make this podcast so great. Katie’s perspective really encourages us to question our own assumptions of what is “normal” and how the experiences of others may be entirely different than our own. This to me is the beautiful thing about the design process, it calls for those who are empowered to design to seek the perspectives of others, accepting the fact that we are blinded by our own assumptions of the world around us. Katie pointed out a few examples of how things like light, sound, space, and other factors can be perceived in many different ways by different individuals. I especially enjoyed how Katie found it hard to define the words we use to group people into easily perceptible buckets because it ignores the fact that it is these terms that cause us to paint huge swaths of diverse persons into stereotypical monoliths. Katie’s lived experience tells us that these broad terms are at best problematic and she challenges us to consider building a world that considers the perspectives of people who experience this world in many different ways.
Written by Rob Pugliese
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Bon Ku: I'm Bon Ku the host of Design Lab, a podcast that explores the intersection of design and health. If you want to reach out to me, check me out on Twitter at B O N K U and on Instagram at D R B O N K U.
Our guest today is Dr. Katie Gaudion. Katie is a design consultant and senior research associate at the Helen Hamlyn Center for Design, which is an inclusive design center based at the Royal College of Art in London. Katie is neurodivergent. And for the last 16 years has collaborated with neuro divergent people to explore ways to make their everyday lives comfortable and enjoyable. She has worked within a range of contexts, supported living accommodation, mental health hospitals, garden design, healthcare services, developing design standards for the built environment and street design. Katie speaks not as an expert, but as a person with lived experience and the privilege of collaborating with lots of different people.
Check out our website at designlabpod.com. There, you can do two things. You can subscribe to our newsletter so that whenever a new episode drops, you'll get an email from our producer Rob Pugliese. And he'll send you his reflections on the show.
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Now my conversation with Dr. Katie Gaudion
Interview
Bon Ku: dr. Katie Gaudion welcome to Design Lab.
Katie Gaudion: thank you for having me.
Bon Ku: Katie, tell us about your current role as a designer at the, Helen Hamlyn Center for Design.
Katie Gaudion: That's right. so I'm a senior research associate at the Center. It's also part of the Royal College of Art in London, and I think I've been there maybe 13 years, quite a while. And, I am particularly interested and I've worked on several projects involving neurodivergent people, and the center is all about inclusive design, so it's exploring ways to design with people and working within a range of contexts as well, so could be supported living gardens, et cetera.
Bon Ku: I love that we had your director, Rama Guroro on the show way back in episode 36. If listeners wanna, make a, footnote of that, that was a great episode. Talking about what the center does. And, you had a couple of terms there that I would love to unpack of, inclusive design you said, and, neurodivergent.
Katie Gaudion: Yeah,
Bon Ku: you, can you talk about what it means first to be neurodivergent?
Katie Gaudion: Yeah. I always find like unpacking words tricky because everyone has different takes on
Bon Ku: Yeah. Uhhuh.
Katie Gaudion: so my take, I'm not saying this is the take on Neurodivergence is people like myself, I'm Dyspraxic and dyslexic. it might also invo include people who autistic have ADHD who experience whose mind and brains might think differently to the majority of people.
so that's how I would explain it.
Bon Ku: Hmm. And that's because we've in medicine. Have normalized or we, labeled certain behaviors as normal and certain behaviors are as abnormal. And that's always frustrating in medicine. Like who gets to define what's normal in the first place? Like what's normal anatomy, you know, what's normal pathophysiology and what's abnormal?
And it's always like, I was like, do we really know what normal is and what's abnormal?
Katie Gaudion: yeah.
because, a term used for people that might not be neurodivergent is neurotypical, but then that feels very kind of a strange word as well. So these words I find it all quite tricky, these words
Bon Ku: super tricky. Yeah. you said inclusive design. What does that mean?
Katie Gaudion: Again, I think it's something that might mean differently to different people, for me, so. Inclusive design. What's important about inclusive design is the process. So making sure if it's a design project that people are involved in the design process and it's not just a designer designing something for someone, but actually, participants are involved in that and even in the design of the brief, right through the whole process.
Bon Ku: What are the benefits to inclusive design? Like if we're not part of that, group that you're designing for, does that help others?
Katie Gaudion: Yeah, so I would saythe actual process of involving people can be really positive for those involved. People can feel very included. Their, their voice is being heard, their ideas are being heard, and then the final outcome could be really relevant and useful maybe compared to a design outcome that was just designed by one person for another person. So it's about understanding people, I think inclusive design as well.
Bon Ku: Can you give some examples of how, you use inclusive design in your practice as a designer?
Katie Gaudion: Yeah. So, I could give you an example of when we designed a garden, a shared garden space, for and with nine autistic adults in supported living accommodation. And, these, residents were involved right at the beginning because we really needed to understand. What their likes and dislikes were, what their sensory likes and dislikes were, how they might want to use their own garden.
And so through workshopping shadowing interviews, we were then able to come up with a design that hopefully was enjoyable for them.
Bon Ku: Hmm. I love that. And it's, so you probably end up getting a design that's a lot more customized for, that
user.
Katie Gaudion: Yeah, definitely.
Bon Ku: what are some of the challenges of, doing this? Because it seems, it seems kind of hard to do and that's not typically done in, the type of like research and work that many, many of us engage in.
Katie Gaudion: Yeah. I think the challenges is, you know, I've worked on projects where I've had the luxury of time, so I've, I've been able to, develop trust, build connections, create comfortable space where I get to know participants fairly well. and I think outside of where I work, I know there's projects that are so fast paced that it's, you don't necessarily have the luxury of time to, you know, really get to know somebody.
so I would say that's quite a challenge of inclusive design.
Bon Ku: Hmm.
Katie Gaudion: And to avoid bringing people in tokenistic, but meaningfully, I think that is a big challenge actually. And obviously with that also, it might be more costly potentially if you want to involve more people in the design process.
Bon Ku: Mm. I often feel that we bring in people at too late of a stage in the, in the design process, right? Like the design has been done already. Whether you're designing like a product or services, and then you bring in the group that you're designing for, kinda like at the end. So it's like, oh, well what do you think about this?
We've been working on it for months or a couple of years. give us some feedback. But that's not what you're doing, right? You're
bringing them at like, can you describe how your process, your methodology is different? Um,
Katie Gaudion: Oh. So I guess I could give you an example of a project where, you know, I had no idea where it was gonna go. And, the project again was working with autistic adults who were in support of living accommodation and, the charity wanted us to explore. Ways in which the people they support could be more meaningfully engaged in everyday tasks such as washing up, hoovering, washing their clothes, et cetera.
so then, you know, I got to know some of the residents, spent time with them, and then recognize that actually a lot of the people I work with may not really understand what a vacuum cleaner actually is for. So I understand. You know, I use a vacuum cleaner to Hoover up because I don't want a dirty floor, but some of the people I work with didn't really necessarily have that sort of relationship with a vacuum cleaner.
So the project ended up really about exploring how to make these activities more meaningful to. The people I was working with. And by understanding again the sensory likes and dislikes, their interests, we were then able to, connect some of that to the active vacuum cleaning. So, for example, one guy really enjoys bubbles.
He loves washing up because of the bubbles. So we designed a vacuum cleaner that. Created bubbles as you vacuum clean. And he was very happy to vacuum clean. and the same with the using a washing machine. one person I worked with loved watching the washing machine spin, and so to create a more meaningful.
Relationship for him in the act of washing his clothes, we created a disc that you suction on the inside of the washing machine and it creates different visual effects. So it's an adding a step into the process of washing your clothes that might be enjoyable for him.
Bon Ku: mm
Katie Gaudion: I hope that makes sense.
Bon Ku: Yeah. I love all this. I. Just thought of how in medicine we call patients, non-compliant when they don't take medications or they don't do the treatments that are prescribed to them. I myself am a non-compliant, I have air quotes, when I'm speaking, myself as a non-compliant patient.
But I'm thinking, well, a lot of the. treatments that we prescribe, don't take into account of the, of the needs of that, of that individual. And, so I think what the process that you engage in that I wish we did that more in medicine, you know? Cause I think often we have a one size fits all solution and we just try to force that upon a population.
Katie Gaudion: Absolutely. Yeah. I think. You know, something I've learned along the way is also is I think why I've sort of struggled also with the word inclusive design is it's often about like thinking about ways to include people in essentially a neurotypical world. But for me, for some of the people I've worked with, it's about how to, enter their, their way of experiencing their environment and what they like to do.
So that I can really learn and understand, that, again, I hope that makes sense.
Bon Ku: Yeah. what are some of the, can you share some of the methods that, you employ of being able to step into their shoes?
Katie Gaudion: Yeah. I think I read in my, wrote in my bio about, you know, I've learned a lot about empathy and I started working the space in some ways because I'm neurodivergent. Maybe there is that level of empathy cuz I've always felt a bit different and experienced things a bit differently. So a lot of other people.
But, when I've. I've been working with people who really experienced things a lot differently. it's been really difficult to, you know, understand how to empathize. and so a way of coming a sort of, trying to explore that was, Actually just sort of engaging in the things that, that people I was visiting liked to do.
So, one person I spent a lot of time with used to like meticulously ripping, faces of people out of magazines. And so we'd, sit together and do that for a long time, and that was our way to connect and I guess, I should also say a lot of people I've worked with don't have much, verbal speech, so materials making has also been a really great way to try and connect and communicate with some of the people I've been working with.
Bon Ku: How did you get into this type of work and research that you do? Can you describe your personal journey, as a designer in this space?
Katie Gaudion: Yeah. I think like, looking really far back, my mom used to be, we're from Guernsey in the Chan Islands, a really beautiful island. And my mom worked in what was then called a special needs school, the only school on the island. And I spent a lot of time with the children she was working with after school.
And there, I'd always be quite interested in the children cuz they. Seemed so different to me, but it was also quite interesting for me and I'd play with them and it was really good fun. And then, I ended up working for a charity in what's called a Snoezelen or multisensory environment.
Bon Ku: This is after doing textiles degree at Brighton, where I designed sculptures for people who are visually impaired. and so, Wait, so you, you studied sculpture.
Katie Gaudion: textiles, but they were kind of textile sculptures. Yeah,
Bon Ku: that's a pretty unique path.
Katie Gaudion: yeah. Sorry. I'm flitting around. That's what I
Bon Ku: That's cool. No, that's cool.
Katie Gaudion: so yeah, after, after that I mean I ended up working Jim Henson's Creature Shop actually, which is quite interesting.
Bon Ku: Wait, what? What's that?
Katie Gaudion: the guy who, invented the Muppets.
Yeah, yeah.
Bon Ku: I love the Muppets.
Katie Gaudion: so I know it was an amazing place. And then sadly everyone's made redundant, but.
but then I think what took me really into this direction was working, like I said, in multisensory environments and their, their environments designed to stimulate the senses, but where it allows a person to have control over what sounds they want, what colors, lights they want. And so I'd work in a van and a room with.
People who had maybe different sensory processing abilities. And it was there that I really could see firsthand how the environment can have a profound impact on a person, and their level of enjoyment and comfort. And then I also remember working with an autistic boy at a, like a kids' holiday club.
And he was really anxious and I had no idea why. And we found out, we called his mom and he said, has he got a paper clip in his hand? And we said, no. So I gave him a paper clip and he immediately relaxed and as a designer, I just found that really interesting because I only associate paper clips really with holding papers together, unlocking locks.
Not that I do that, but for this boy, a paper clip gave him a lot of comfort and support and I found that really interesting. I continued to find that interesting, meeting people that might afford things differently to the majority of people. Or appreciate something about an object such as the washing machine in terms of watching its spin, rather than seeing it as a functional ob object to wash clothes.
And yeah, that, that led me to do textiles again at the Royal College of Arts, to critique these multisensory environments. And then, um, then onto the Helen Hamlyn Center was fortunate to work in the space of autism and do a PhD, so that's quite a real short muddled description.
Bon Ku: what was your PhD in? The PhD was, it was exploring how autistic people with, limited verbal speech, how they experienced their home environment. and so yeah, I think there's, at the time there really wasn't much research out there That was focused on design and autism and the environment. And you know, from my days of working in multisensory environments, I could really see how design could have a really positive impact.
Katie Gaudion: How the environment, how it's designed, can have an impact on a person's comfort.
Bon Ku: Do you work with architects around designing the built environment for, giving the inhabitants of that environment, like a better sense of control?
Katie Gaudion: yeah, a little bit. Not Lowe's. We, we did develop, sort of built environment guidelines. I think a really important project that did come out recently was, with the British Standards Institution, who develop, guidelines for the built environment for architects, for example, and they've never had guidelines that consider neurodivergence.
And so, we did a scoping study to prove that there is a need for something like this, that people who are neurodivergent may experience the environment differently. And so it's really great that there's, now it's called a PAS Publicly Available S pecification, and it gives suggestions or guidance on what to consider in terms of built environment for neurodivergent people. but these things are really tricky because I just, this is why I find it really difficult to talk about this around this space because it's really difficult to generalize cuz everyone is so different. I always get asked in conferences what color autistic people, like people really want definite answer and I can't give that.
I, you know what, it's like asking what color do all humans, like, is there one color? And, and like there isn't so, And this is why I find the space difficult to talk about because it is very difficult to generalize
Bon Ku: Yeah, you have a project that you're currently undertaking around, inclusive design for, streets. Is that right?
Katie Gaudion: yeah, it's, uh, a project, funded by the Reese Jeffries Foundation and, It's really inspired by a bit like the design guidelines, that there's very little knowledge on how neurodivergent people experience streets in the public realm. So it is more of a scoping study to really explore how neurodivergent people experience streets and whether there's anything design-wise that we can do to make that experience better if there needs to be as well. So we are right in the middle of it, so I don't necessarily have too much to share with you right now, but,
Bon Ku: Well, I haven't heard of research being done in this space. is there a lot, lot of body of evidence.
Katie Gaudion: there's not a lot. I think, you know, I'm also guilty of, actually focusing a lot on the built environment, which in some ways is a space that you can have a bit more control of. But the minute you step outside, there's so many variables, unpredictable variables like people, dogs, sounds, sight, you know, colors, shadows, So, I mean, I, I've met one autistic person that, gets really scared of shadows, cast by trees on pathways cuz he perceives them as, solid, you know, blocks or holes.
So there's all sorts of things that we may not have considered. That would be something to consider.
Bon Ku: I've seen some research out there around, designing spaces in hospitals to be better suited with, People with autism because it's such a chaotic environment, and anyone who goes in the hospital, who's a patient just feels like this, like loss of control. And it's a, it's a scary place. And, often we're entering in there as, as human suffering.
So you take us in our, In a worst time of life, you put us in a stressful, chaotic environment. You, subject us to sleep deprivation and it's, it's stressful for anybody. and I'm curious to know, have you engaged in research in this space around the built environment of healthcare settings?
Or do you, do you know of folks doing, work in this space?
Katie Gaudion: Yeah. a project I'm just finishing actually is with a charity called Heart and Soul in London. And it's a, collaboration also with, the NHS in Greenwich. And it's been amazing project two years and it's exploring how to potentially improve health and social care services for people with learning disabilities and autistic people.
and yeah, it's really highlighted some of the challenges, not just the environment, but also the social challenges. And I think communication has come up as a really big thing that, you know, right from when you get the letter or having to make a phone call to book an appointment, all those things are just completely, difficult for people to actually do even before you went to the
Bon Ku: Yeah. Even as someone who is a physician, I had, my, my daughter had to get surgery under knee and that process was just like confusing and stressful. And I know the system. I, I work in the system.
Katie Gaudion: Yeah, there's been, it's highlighted a lot of challenge and jargon's been a big thing, like the use of jargon, words that nobody understands. so. Yeah,
Bon Ku: what are some practical things that we can do in hospitals to design them better?
Like if you had an unlimited budget, like what would you do? It's like, this
is like, this is like easy, this is like step one. This is a basic thing that, that
we can do.
Katie Gaudion: well, I would say, step one, so is training for people working in hospitals, you know, so there's more understanding and empathy around people that may be, sensitive to what's going on in the environment or may communicate differently. I think a big thing that came out from this project was when healthcare practitioners don't always look at the person but their carer when they're speaking. And that just doesn't make that person feel very good.
Bon Ku: Oh yeah, we look at the computer screen
Katie Gaudion: Oh yeah, that's a good
point.
Bon Ku: Are we supposed to do that now? We'll look at people in the eye. No. Yeah, you're right. I, I hate that even with me. I've, I've had experiences. I'm pretty healthy, but as a patient, I. And I'm like thinking what? The doctor's not even like looking at me, they're just like looking at their screen.
I felt like a little dehumanized even. and I know what's going on. Like, I was like, yeah, I know your day's busy and like you gotta chart and do all this stuff, but I'm a human. Like, can you look at me please? I felt like it just wasn't a good experience and I, and I was just like laughing at myself.
Cause like, I'm like, I know what's going on, but it still does not feel good.
Katie Gaudion: Yeah, definitely. there's so much. I think the waiting room has proven to be really problematic waiting, not knowing how long to wait, what information to look at, to know when their appointments come up. So I think there's a lot of confusion, anxiety in the waiting room, particularly as well.
but yeah, you know, I've seen before, great communication where somebody has received information and with visual cues of the environment that they're going into, what to expect. So if there's any information about the space that a person can look at beforehand, like whether it's a short video of the space that they, they're prepared for, what they're about to enter is always really, really useful.
Bon Ku: you use emerging technologies like, VR or AR to help out in this space? Because I've seen a lot of that and
I've not, I've not used it, but like, but it just seems like there's so much, uh, chatter about vr.
Katie Gaudion: yeah, I haven't, so I don't feel like I can really speak about that.
Bon Ku: Yeah. tell us about, some other research projects that, you've been working on or, or have worked on in, in this space.
Katie Gaudion: Another project I worked on was, it was for, in a mental health hospital and it was for, essentially, it was working with men who, were autistic and were defendants. That's the term that was used. So instead of going to prison, they were in a mental health hospital and it was a very high secure ward environment.
And that project was about exploring, how to make. Their space where they live, their ward more homely.
and it was really difficult
Bon Ku: Yeah.
Katie Gaudion: because there's so much health and safety regulations in these spaces. I mean, you can't even have a Christmas tree, you know? and I think it was a project where I really had to manage expectations of the people I was working with.
I did lots of engagement, got really well with the, the people in that space. and I think it's a project where the design process I think really showed to have been benefit. I think the people I was working with don't normally, get asked like, how do you want your space to be?
So I think just having that conversation, listening to what their voices and what they might want, their ideas was I think they really enjoyed that. But then whether those ideas could actually be realized is another thing. But I think the engagement side of it was really, really, it was really great.
Bon Ku: That's so important to you. It sounds so basic when we're talking, but often that does not happen in the design process of simply asking people what do they want?
And what are some of the challenges with that? Cuz I imagine with some of the funders or some of the organizations that you work with, they want to move fast and this process is not fast. it's slow,
Katie Gaudion: Yeah, I think, you know what? I think I've just been really fortunate to work with charities and organizations who already have a real understanding of, some of the people I'm working with and that things do take time. So for example, this project I just mentioned, exploring health and social care services, the first year was spent just building relationships.
And that was just amazing that that was the priority for the first year. And then the second year went into the design process. So, yeah,
Bon Ku: yeah. Do you work with, healthcare professionals routinely? Because I would love to work with you on, on a project, you know, which, people with your skillset would be part of the care team in hospitals.
Katie Gaudion: would be amazing. yeah, like absolutely. the design project, Working that I just mentioned wouldn't have been possible without also involving health and social care practitioners. And then another project was with Virgin Care, looking at redesigning the autism diagnostic system cuz there's such a lengthy wait for diagnosis and it's proven to be speaking to parents and healthcare practitioners.
That is quite a complicated process. So that was a, project?
Bon Ku: to get a diagnosis of autism. how long, does that take?
Katie Gaudion: well, I'm not an expert on this, but when I was doing that project it was two to three years.
Bon Ku: What.
Katie Gaudion: Yeah. It was long.
Bon Ku: my gosh.
Katie Gaudion: yeah, and I think there was a lot from the research, speaking to parents, it was just, The actual process was not very transparent.
So families weren't really understand where they were in the process and what that looked like. And I think just being able to visualize that gave a lot of reassurance. so. And that was really interesting because the diagnostic process does involve lots of different professionals from different areas, and that project was, was able to bring people together and actually talk together about it, which may not always happen necessarily.
Bon Ku: What advice do you give to someone who wants to get into the type of work that you do? We have a. A lot of folks, , who are students or changing careers, listening or, folks in the healthcare space or design backgrounds who may be interested this space.
Katie Gaudion: wow. I'd say, well, for me, so. I think my experience working for a charity in sensory environments. Sort of spurred me to really want to work in this space. and that enabled me really fortunately, to explore that through design at the Royal College of Art. So, you know, there, there are really interesting charities out there doing really interesting things.
So even if on a voluntary basis you can like, connect with them and maybe there's a bit of an avenue you can explore, I think that would be really good.
Bon Ku: my last, and one of my favorite questions I ask to each guest is, if one of our,persons from the listening audience were to come visit you, whoever do you take them out to eat.
Katie Gaudion: Yeah, well, it depends what their budget was,
Bon Ku: So,
Katie Gaudion: but if you want a really good treat, there's an amazing restaurant called the Jetty. In a place called Erford, right on the water. It's beautiful and if you like fish, it's amazing, but also you can just go down the road and buy some fish and chips and go and sit on the beach, which is 10 minutes from where I am, which would be equally as amazing.
So I'd recommend both those options.
Bon Ku: Love it. Well, I love seafood and I gotta go check it out. Thanks for. Coming on the show, it was, it was great to learn from you and really, am a fan of the, of the work that you are doing.
Katie Gaudion: Thank you. Thanks so much for inviting me.
Bon Ku: if you want to learn more about Katie's work and research, check out the show notes and subscribe to our newsletter.
Design lab is produced by Rob Pugliese, editing by Fernando Queiroz our theme music was created by Emmanuel Houston and the cover design by Eden Lew see you next week.
