Sarah: You’re listening to Good Fit Poor Fit. A podcast that explores the interaction between people, design, and activity. Good Fit Poor Fit is part of The Universal Design Project, a nonprofit organization with a vision for every community across the USA to have a surplus of homes and opportunities for social participation that are universally and financially accessible.
[00:00:27] Learn more at universaldesign.org.
[00:00:31] Hello everyone. And welcome to episode 31 of our podcast. Today, Rebecca and I are really excited to have Dr. Kathryn Hansen with us. She also goes by Katie so we’ll go with that for the rest of the episode. She applied to be one of our design advisors within our organization and I was really interested in her background as an occupational therapist specifically working with individuals who have an autism diagnosis. She also has a PhD focused on how the built environment impacts participation for people with an autism spectrum disorder and has done research on how the built environment can either contribute to or reduce anxiety for people on the spectrum. She has a great website and I will link that in the show notes of our episode as well.
[00:01:22] Rebecca: Yes, we are so fortunate to have Katie on our team as a design advisor and now as a special guest on our podcast. She is a true example of an occupational therapist going beyond a basic clinical role to promote wellbeing and participation for a variety of people. In today’s conversation, we’ll talk about that, Katie’s work, and how the design of an environment can be a good or bad fit for those with autism and how this relates to universal design. So Katie, welcome to Good Fit Poor Fit.
[00:01:54] Katie: Thank you for having me.
[00:01:56]Rebecca: So, can you tell us a little bit about your work?
[00:01:59] Katie: Yeah. So, like you guys said, I am primarily an occupational therapist, so that’s my role first and foremost. I work mostly with children and young adults on the autism spectrum as well as more generally in early intervention here in New Jersey.
[00:02:18] I also have a background in neuroscience and neuropsychology and a PhD in occupational science. So, I do other things like teach courses to other OTs about autism and assessment and intervention. And then I also do research on sensory features. And, like you guys said, how to create environments that are more inclusive of people with different sensory needs and preferences.
[00:02:45] Sarah: That’s really awesome. It sounds like you have your hands on a lot of different things with your background.
[00:02:53] Katie: Yes.
[00:02:53] Sarah: So for people who are listening who don’t know a lot about autism, can you explain to them what autism is?
[00:03:02] Katie: Sure. So, diagnostically autism is defined as a deficit in the ability to communicate and interact socially, as well as the presence of certain rigid or repetitive behaviors.
[00:03:19] And in that category also patterns of either under or over responding to sensory stimuli. Personally though, I favor the neurodiversity perspective and that defines autism more as a difference in the way that a person’s brain is wired. So, that may cause them to interact differently with the things and people in the world and maybe behave a little differently as well.
[00:03:46] Sarah: Sure. Yeah, that makes a lot of sense. So with all of that, what types of things may people with an autism diagnosis have difficulty in at different stages of their lives — different ages, a child, a teen or adult, maybe at home, school, or at work?
[00:04:05] Katie: So because autism is such a wide spectrum, it’s hard to make really definitive statements since what is difficult for one person in one setting might not be hard for another. But generally it might be harder for a person with autism to pick up on nonverbal social cues like reading facial expressions or nuances in conversation. And this can impact a child’s ability to make friends at school, for example. Or an adult, for them to understand what’s appropriate or not necessarily to talk about in the workplace.
[00:04:42] Sometimes a person might have difficulty shifting their attention from one activity to another, especially if they’re doing something that they’re very interested in. And also one of the biggest challenges for people on the spectrum is that being extra sensitive to sensory stimuli can create situations where the stimuli they’re experiencing is uncomfortable or even painful, which can lead to behavior such as meltdowns or tantrums that society might not understand, which can make it really hard sometimes for families to be out in the world and do activities together.
[00:05:21] Rebecca: That must be really challenging because there can be all different things that can be triggers for different people. Right? And that can be unpredictable.
[00:05:31] Katie: Yes. And because it’s a spectrum too, sometimes people might have sort of minor expression of these autism traits, whereas others might have a more of an exaggerated expression of some of these traits. So it really varies widely.
[00:05:50] Sarah: And I think that might be hard, like you said, for other people in the public to understand because I think a lot of times people, you know, that have a physical disability, it’s, you know, you can see something with them, but individuals who are maybe sensing something around them, that’s too loud or too bright, or maybe a texture is weird. That might be hard for other people to understand, why a behavior might be popping up like that.
[00:06:17] Katie: It is, exactly. Because it’s a disorder that’s based on behavior, I think sometimes people will see a child having a tantrum or having a meltdown and assume that it’s just a child being disobedient or, you know, a child who’s not being raised well, when in reality, they’re really responding to some really uncomfortable sensory experiences that they’re having.
[00:06:43] Rebecca: Yeah. That makes sense. And I think that that really highlights a difference, as Sarah alluded to, between autism spectrum disorders and a lot of disabilities that people typically think of when they think of disabilities. They think of things that they can see, but autism spectrum disorders are not something that can be seen.
[00:07:02] And so I imagine that creates a particular challenge. When you think about physical barriers and accessibility, because I think when people think about accessibility, they typically think about those physical barriers. But what barriers do people and families who live with someone who has autism look for in spaces that might make it hard?
[00:07:23] Katie: Yeah. Good question. So what I just described, so like signs of sensory overload, such as the a child with autism having a meltdown can be a huge issue. Not having a place that families can go to when this happens is a big barrier in many public spaces. So oftentimes, especially in families with multiple children where one of them might have autism and the other children don’t, the families might start the outing together, but then have to split up.
[00:07:53] So when the child with autism has sort of reached a point where they’re experiencing sensory overload, one parent will take that child home, where the other parent will stay out with the other children. So, you know, it would be great if public places offered more protected areas with lower levels of sensory stimulation that maybe that family can stay in, or have a designated space that that parent can take their child with autism to calm down so that families don’t have to be so divided.
[00:08:25] And another thing I think families look for is how crowded the public place is going to be. So larger crowds, especially, can be very overstimulating and very unpredictable. So families know that the chances of sensory overload are really high and will often just not even take that chance and just stay home instead.
[00:08:47] Rebecca: Which is such a shame because that so impacts the participation, especially for young children and families from their families having to split up when they go on an outing to maybe sometimes being completely excluded from certain experiences, which is a real shame. And I think speaks to the value of the type of work that you do in designing spaces that do have those different features.
[00:09:13] Perhaps a place where a child can take a break when they are having sensory overload, or not just a child, anybody. So on that note, I’m wondering what are some of the things that people might not know about typical environments that do or don’t work for people with autism? Like, are there things that are considered commonplace within spaces that are affordances for people or maybe barriers?
[00:09:36] Katie: Yeah. So I think when designing for people on the spectrum, or people just in general with different sensory needs and preferences, a lot of times just embedding choice within the environment is helpful. So, it’s good to have environments that are as customizable as possible. So some examples could be having like the lights on a dimmer for people who might be visually sensitive or even having like modular furniture that can be segmented in different ways to create maybe areas of enclosure for someone, for them to be able to feel more safe and secure in that setting or to be moved, to create an area with a lot of openness so that someone else she might have the freedom to move around a lot and move their bodies and explore as needed.
[00:10:30] Another important factor to keep in mind is just the durability of materials that are used when designing environments. So sometimes features of the environment are going to be used in different ways than they may have been intended. So for example, a person with autism might bang on or even climb the furniture as a way of regulating their sensory needs.
[00:10:54] And that can cause wear and tear more quickly. Spaces that are built to be well-insulated as well can be important, especially for people who are more sensitive to temperature changes or different smells, for example.
[00:11:09] Sarah: Yeah, I think the point you brought up about material choice is actually really intriguing to me because I think a lot of people don’t think about that and how all the different ways different areas of the community might be used and to make them very durable for any type of situation. I actually hadn’t thought about that before, so that’s kind of neat.
[00:11:31 Are there any other things that you do as an OT to help families with some of the situations that you mentioned above?
[00:11:38] Katie: Yeah. So as an OT, a lot of what I do is work more one- on-one with children and their families. I do a lot of educating about what their child’s specific sensory needs and preferences are and then how to help meet them. And so I work mostly in the home or in a clinic setting and not so much out in public spaces, although that would be great.
[00:12:05] But I work more in the traditional model of OT. So sometimes like I’ll help a family figure out how to help their child receive the sensory input that they need, using the objects and materials that are available. So, for example, if a child is craving deep pressure in their muscles and joints, using like a weighted blanket that they might have at home. Or depending on their age, having them help with chores like carrying heavy grocery bags, or carrying a full laundry basket up the stairs.
[00:12:37] These are some good examples. And sometimes suggestions for just low-tech equipment are helpful. So like noise-canceling headphones for a child who is auditorily sensitive. Or like a silicone necklace that a child can chew on if they’re seeking sensory input in their mouth and jaw. This is helpful in the home and, you know, out in public spaces. Like I said, sometimes you might find that a child is trying to meet those sensory cravings by chewing on just materials they can find in the environment.
[00:13:10] So giving them headphones or something they can chew on to take with them is another way of helping these environments become more accessible to them. And obviously like any good OT, I’m always paying attention to whether or not the environment is helping to support their sensory needs and contributing to positive sensory experiences, which always starts with making sure the child feels safe and feels secure in whatever setting we’re in.
[00:13:37] And then I also do a lot of evaluation and intervention related to sensory integration, which is kind of a whole related field about how to help children learn how to organize this sensory information they get from different modalities and then process that in their brain into a meaningful piece of information and know how to respond appropriately with their bodies.
[00:14:01] And you know, right now a lot of OT operates within this traditional model. But I’m always continuing to push for OTs to be a part of design teams. Any architect or designer who’s interested in inclusion to work with OTs to help figure out what’s important in creating sensory inclusive spaces.
[00:14:23] Sarah: Yeah, there’s definitely an important part for OTs to definitely be involved in homes. But I agree with you. Like you said, a lot of families have to split up because you know, the community or the spaces that people will go to just aren’t a great fit. And I mean, all the things that parents have to think about to bring with them. We have to bring those noise-canceling headphones, and then we have to make sure they have this. And, yeah, so that’s a lot for families to think through just so they could maybe go to a pumpkin patch or go to the park or different things like that.
[00:14:54] So, I agree. I think just even the knowledge that you bring or others who are well-versed in the needs of individuals with autism can really help add to a community space to make it more welcoming for everyone.
[00:15:11] Katie: Yeah, I think it’s not just having a sensory room if the child needs it. I think it also just brings so much peace of mind to the parents to know that if they need it, that it’ll be there. They might not necessarily have to use it. But just to know that it’s an option, I think just takes a lot of anxiety and stress away from parents that are trying to plan these fun outings, not just for their child with autism, but for their whole family.
[00:15:41] Sarah: Sure. To know they have that plan B and to think through all the options if they need it. Yeah. That makes a lot of sense. So do you have a memorable or unique solution that you’ve implemented in the past?
[00:15:55] Katie: Yeah, there have been many, but I have to say my favorite is always when I talk to families about the usefulness of creating sort of calming sensory nooks in their home that they can use when their child is frustrated or overwhelmed. And I love just seeing what they come up with. Sometimes they’ll transform like a kid’s tent. Or create just a cozy corner with sheets and blankets and then add things like soft pillows, and twinkle lights, and a hammock, and essential oils sometimes. It always makes me want to create one for myself in my own home, too. Maybe I will one day.
[00:16:35] Rebecca: Sounds straight off of Pinterest. I love that.
[00:16:38] Katie: I know.
[00:16:40] Sarah: Yeah, no. I actually had a friend tell me recently that their son had his little spaces within their home. That was like a comforting space.
[00:16:50] And she, she couldn’t find him one day and, you know, she checked all of his normal spaces that he would be in like a cozy corner or something like that. And, she saw his window open in his bedroom and found him sitting on their roof. And found that he liked this little cozy corner, like right outside of his window on the roof. And she was like, well, we need to make this a little safer if this is going to be one of your places you need to go to, you know, take some time. And so she was telling me about that and she was trying to figure out how they can make that a little safer for him.
[00:17:28] But, it is kind of interesting and unique to see how different families find what their family member needs in that regard.
[00:17:37] Katie: Yeah. And it’s great that she’s following what the child is doing. And, you know, I think kids are the best teachers in understanding what they need. You know, they tell us all the time based on how they act and how they interact with their environments, what they need and what they’re seeking. So it’s great that she’s listening.
[00:17:58] Sarah: Yeah. That’s a really good point.
[00:18:00] Rebecca: So Katie, I’m wondering, I’ve seen a lot in mainstream media things like sensory rooms and weighted blankets and all of these different sensory adaptations that are coming out in the mainstream that I understand largely came from interventions that are often used for people who are diagnosed with autism. Can you tell our listeners maybe what a sensory room is, and how or when it could be the right fit for a person with autism?
[00:18:29] Katie: Yes. And this can be kind of a confusing topic because sensory rooms there’s a huge range of what they can look like. They vary again, like I said, based on what’s in them, but also what their exact purpose is. And I think, you know, we have this sort of umbrella term of a sensory room, but, they can be specifically designed sort of like we’ve already talked about to be like a calm down room for when a child is having some behavioral issues and might need to get away from like a mainstream environment to calm down or to recover from sensory overload.
[00:19:07] I’ve seen other sensory rooms like in schools and these have more equipment that’s targeted for certain sensory input, like heavy proprioceptive input and vestibular input. And those are helpful for kids to be able to move and use their bodies in schools as kind of a break from the expectation that they have to keep their bodies still and sit at a desk for a long period of time.
[00:19:36] Rebecca: Would that be something like a chair that’s bouncy or something like that, just to paint a picture for people?
[00:19:43] Katie: Yeah. So, big yoga balls, or like climbing ladders, things that you see kind of in a kid’s gym. They’ll put in like specific sensory rooms in schools, so kids can climb or crawl or just really move around in the ways that you see kids love to do.
[00:20:03] And this can be really organizing for them to then go back into the classroom and be able to be more still and do some of that more tabletop learning. And then there’s another type of sensory room called a snoezelen room. And that word “snoezelen” is a combination of two Dutch words that mean to stimulate and to relax.
[00:20:23] And these rooms are intended to provide a lot of just sensory nourishment. And these are the types of rooms you’ll see that typically have like different colored lighting, like really tall bubble lamps, things like that. And those you find also sometimes in schools and sometimes public spaces that are sort of sensory-friendly will have spaces like this for kids to go into.
[00:20:51] Rebecca: I see. That makes sense. So I’m wondering though, you mentioned that these things are really different for different people who have different sensory needs. So do you have any advice for someone who might experience one of these sensory rooms thinking about whether or not it would be a good fit for them?
[00:21:10] You know, is it important to understand what sensory needs someone has before they use a sensory room?
[00:21:17] Katie: Yeah, it definitely is because, you know, sometimes I’ll work with kids who will be doing a lot of, sort of big movements. Like I said that proprioceptive vestibular stuff and that can sometimes kind of ramp up kids’ excitement and energy kind of has the opposite effect. So, you know, every kid is different and every kid’s needs are different. The best thing to do is to just observe and watch and see what for them tends to be calming and what tends to create more excitement.
[00:21:53] Rebecca: It’s not really a one size fits all type thing.
[00:21:56] Katie: No, it’s not. It would be great if we had like, you know rooms you could take your kid and try it out and see what they like and don’t like. Maybe in the future, we’ll get there.
[00:22:07] Rebecca: Yes. That’s a dream for the future.
[00:22:09] Katie: Yeah.
[00:22:11] Rebecca: So in the spirit of universal design in a home setting, are there design features that you could recommend for someone that has autism spectrum disorder but that would maybe even benefit people who are also living in the house as well, who may or may not have a disability?
[00:22:30] Katie: Yeah. And there are design features that are sort of sensory specific that will help people not with autism, but people that have other sensory related needs. So, one example is sensory zoning. And this means like delineating areas based on the type or intensity of sensory stimuli that will be experienced there.
[00:22:56] So having areas of high sensory stimulation, such as a kitchen, that obviously has a lot of beeping, a lot of sounds, a lot of smells — keeping those places far away from low sensory intense areas like restful areas like, a bedroom or an office. And that can be helpful for people who have difficulty sort of internally regulating the intensity of sensory experiences that they’re getting, which is not only people with autism, but also people with attention deficit disorder and even just those who tend to be more sensitive to sensory stimuli.
[00:23:36] Another example is using multisensory cues for wayfinding. Especially in more public spaces or buildings that might be unfamiliar to people, like a doctor’s office, for example. So by multisensory cues, I mean using a combination of visual cues, such as changing the color of the walls to indicate a new area. Tactile cues, such as a change in the type of flooring, combined with auditory cues, such as, the amount of echo that a space might have. And this can help people navigate within the space and understand cognitively when they’re sort of transitioning from one area to another, or to indicate that the new space that they’re in has a different purpose.
[00:24:23] So for example, moving from a lobby into an exam room in a healthcare building. And this strategy is helpful for people who might have a deficit in maybe one sensory modality. So those with hearing impairment or low vision can use sort of the other sensory cues to understand how to navigate this space.
[00:24:46] And also people with neurodegenerative disorders like dementia, for example, who might become confused more easily, or, you know, may have lost some of their precision in processing information generally about their environment.
[00:25:00] Sarah: Yeah, I was actually just going to mention that. I’m glad you said it because as you were mentioning some of those things, I’m thinking, well, this would be helpful for someone with hearing loss or dementia. So that just really goes to show that a lot of these different features can benefit different people with different impairments. So, yeah, that’s great.
[00:25:19] Rebecca: So Katie on your website, it looks like you’ve participated in quite a bit of research and publishing. So what are a few notable things that you discovered and think would be valuable for our listeners to hear?
[00:25:33] Katie: I think what continues to be most interesting to me is that the more we research these sensory features, the more we realize how closely connected our ways of processing sensory information are to how we move our bodies, to our behavioral choices, and to how we’re able to stay socially in tune with one another. So, also, I mean, I’m constantly fascinated by that and I love being involved in those types of research projects that try to make the connections between how a person processes sensory information and how they then learn how to talk to somebody about features of their environment that are important to them, things like that.
[00:26:26] And I’m also always really interested in research out there on embodied cognition and even embodied neuroscience that really embraces the understanding that all of our knowledge too and our cognitive processing is rooted in our sensory and motor experiences.
[00:26:46] Rebecca: That is really fascinating to a neuroscience nerd like myself. The way that our processing of sensory information really impacts our behavior and our understanding of the world it sounds like is an area of science that is growing . And it sounds like that’s something that warrants a lot more research and understanding because of how much we are impacted by our sensory world and our sensory experience.
[00:27:17] Katie: Yes, I agree.
[00:27:19] Sarah: And I think that’s like a nod to help remind us all to be creative and just to observe people who interact with the world differently. I feel like we can learn a lot from individuals who are experiencing different things, sensory-wise, and how they interact with their environment. I think it’s a great opportunity for us to design things, to be more creative and to just, think outside the box.
[00:27:47] Katie: Yeah, I agree that the research projects that I get the most excited about are the ones where, like, for example, I’m taking a GoPro camera and putting it on a harness of a kid with autism and seeing from their first-person perspective how they’re navigating around the environment and you know, what features they might be looking at or paying attention to. Any of that sort of phenomenological way of understanding — how is this person and their environment interacting together to create a certain experience for them, or to influence the behaviors that we see?
[00:28:29] Rebecca: I think that’s such an important and relevant question to ask in general, but especially when it comes to design. Because I think that it’s asking questions like that — how is someone else experiencing this world? How is someone else experiencing this environment? — that leads to more empathic design and designing for a wider variety of people, including all those different experiences, considering those different perspectives.
[00:28:54] Sarah: Yeah, I really agree with that, Rebecca. That’s a really good point. I’ve also seen people do kind of like an art show, or they gave individuals with different diagnoses a camera and they sort of did that same type of thing. They went through their day and took pictures of things that were meaningful to them. And then they actually got to present their photos in a gallery type setting and explain their day and that was very interesting for me to go and experience that as well, to find out what is important to different individuals, in their lives.
[00:29:27] So, yeah, I think that’s awesome.
[00:29:30] Well, is there anything else Katie, that you’d like to talk about?
[00:29:33] Katie: I don’t think so. I mean, I just, I really appreciate the work that you guys are doing and I’m really happy and excited to be a part of it. I mean, even learning about the other side of universal design, the physical differences that people might have and being able to bring maybe a different perspective about sensory needs and preferences that’s maybe more invisible like we talked about. It was just a great opportunity.
[00:30:02] Sarah: I’m really glad to have your perspective because I think, within our organization, as we review different things, most people, I mean, even people out in the community think about individuals with physical disabilities and everything that you described today is just a nod for us and for other people designing and building things to really think outside the box and consider how everyone experiences the world. And so I’m glad that you’re able to add that perspective to what we’re creating in our organization.
[00:30:35] I think you can even help our listeners learn more about implementing some of these design considerations into their work to benefit people in their own communities as well.
[00:30:44] So, thanks for taking the time to be with us today. And, we’re glad to have you as a design advisor as well.
[00:30:52] Katie: Well, thank you for having me.
[00:30:54] Sarah: Thanks for listening to Good Fit Poor Fit. I’m your host Sarah Pruett, Program Director and Occupational Therapist at The Universal Design Project. Learn more about our work at universaldesign.org, and find more episodes and links to subscribe at goodfitpoorfit.com. If you have questions or topics you’d like to discuss, email us at [email protected].
[00:31:24] Thanks for fitting us into your day!