Welcome everyone. We're excited to kick off an episode of the Design Board today. The Design Board is a podcast by UpSpring that focuses on design, development, and everything in between. We host innovators in our industry and explore topics that support your growth in every way. Today we have AJ Paron with us. AJ has acquired significant experience working in the design build industry. She has created and led a multimillion dollar award-winning design build firm, developed national programs for ASID, developed and funded design research programs for the University of Minnesota, and pioneered various charitable programs.
AJ has also been a design consultant for interiors and healthcare and education, specifically dealing with autism. From school settings, therapy environments to her most noted work on the building for the MIND Institute in Sacramento, California, AJ has used her skills as a designer and blended them with her experience of raising a son with autism. In 2013, AJ finished a trilogy e-book series on designing for autism published by Wiley. Professionally, she's serving the design industry as the executive vice president for Standout Design Group, responsible for the B2B brands of Interior Design Magazine, Metropolis Magazine and ThinkLab. AJ is also a design futurist for SANDOW Design Group. AJ, thank you so much for being here. We're so happy to have you.
Thanks, Tiffany.
All right, AJ, let's hop right in. What is neurodiversity? Why is it relevant to the way we design our spaces from our airports to sports arenas, our schools? We need to accommodate for neurodiversity everywhere.
It's a newer term, neurodiversity. And the average public person didn't start using it until probably five, six years ago. But anyone that has been in the special needs arena for many, many years knows that it tends to talk about people that have developmental disabilities or some sort of neurodivergent thinking. So it could be that someone had a stroke, it could be that they have Parkinson's and their memory isn't as great. It could be just how they process stimulation. And that kind of goes into a wider range of like ADHD and ADD individuals.
So it's a very, very broad term, but mainly talking about how people can think differently because of how their brain is processing, and having that understanding really makes a difference on how you design for space. Because if we all remember back to our design days in school, we take our sensory processing, and we look at light, smells, and touch, and texture, and all those things come into play to create an experience. And when your brain has different neural pathways and something that, Tiffany, you might think is a great color and soothing could be really overstimulating for someone else. And so you have to have that appreciation and understanding that how you are experiencing the world as a designer might be different than somebody else experiencing that built environment as well.
No, that absolutely makes sense. It's all about perspective, right? AJ, can you tell us a little bit about your story? How did you get into this work? How did you start doing this work?
Right. Well, this was not my plan when I was in design school, I could tell you that. And I was lucky enough to go to school where it was an interior design program, but very research-based. I had to do an evidence-based research project as a thesis before I graduated with a bachelor's, which I of course at the time thought was horrible and torture, but in retrospect was probably one of the best learning experiences of my life.
And I had graduated college, I had gotten married, had a baby, and everything seemed really normal. And then my son, when he was about two, started developing these kind of weird attributes to his body language and his speech was deteriorating. So he could speak. He was making all progress developmentally. He was right on track. But then around 18 months, he started losing those things. So his speech began to decline. He started to be very self-injurious. He was having tantrums all the time. And you're talking the early 1990s. So really the only exposure that most people had to anyone that had autism was the movie Rain Man, which doesn't look anything like a two-year-old. So it was really actually hard to get a diagnosis because we didn't know what was going on.
So by the age of three, he finally got diagnosed. It took a very long time. And then there was a very long wait to get him into care. And you have to understand, at that moment in time in 1990, only one out of 10,000 children were diagnosed with autism. When my son was diagnosed, it had jumped to one out of 500. And now you see in state where I live, like Minnesota, our diagnosis is now one out of 32 children have autism. And so it's becoming a lot more prevalent and there's lots of discussion why, but at that time it was still very rare.
And I said, gee, I did my thesis on Alzheimer's research. There must be a ton of design research out there for designing with autism. And unfortunately, there was nothing. I mean, I combed the world, and the only research that had been out there up to that date was done in the 1970s when these children were institutionalized, which is a very different setting than most of the kids are in today. So I was lucky enough to have some design professors, doctorates of design, Dr. Denise Garron, who said, "Gee, AJ, you should do this research."
And so right after my son was diagnosed, when I was trying to find these answers, I jumped right into doing the research. They gave me some grad students, and we started putting together design principles, really looking at the neurofunctions of the brain, what was not working or what was different, and how that was different in space because of the neural processing. So we started with kind of the groundbreaking principles back in the 1990s, and it's grown a lot from there.
That's incredible. I mean, speaking to the prevalence, I recently read a statistic from Neurodiversity Media that around 15 to 20% of the world population is neurodivergent. How can the design community understand neurodiversity better? I mean, obviously you sort of led research at a time where it was incredibly needed. How do we really further that education so that as we're designing for all variety of spaces, we really have the information that we need to make sure that we're taking into consideration such a large portion of the population?
So there's a term that I felt like I coined it, but apparently I have not coined it, but I would like to think that I did. It's called design empathy. And it's this idea of really understanding when you're designing for someone else, which most of the time, interior designers, that's what you're doing. You're designing for a population users. Sure, you might like it, but I think any designer out there has always had a client that you're like, wow, I would never put this in my house. Or gee, this is not where I would want to work. But this is what they wanted, and for very good reasons.
And so design empathy is really understanding that state of mind and what that experience could be for someone else. It's kind of like if you've ever gone to Disney World, and you'll have a group of people, some people love it and it is the best experience and they're having the best time. And then someone else is miserable. They don't like the crowds, they don't like standing in line. They can't handle all the smells and the noise and everything, all the motion, everything that's happening, and they're literally in utter hell. And yet somebody else is having the best time of their life.
And so that very much parlays over into the built environment, into space for people. Where I've had over the years, so many people call me and say, "Gee, AJ, they're designing this new play area in our hospital for children. And it looks like Ronald McDonald came in and threw up. It's just all bright colors and it's just way too much." And all the nurses know better. They know that their kids that are neurodiverse are going to have a really hard time. And a lot of what you have to plan for in space is the transitions, getting someone to move from one place to another. So getting them to get off the playground to go into the doctor's office, no one's going to want to do that.
And so it's understanding that people could have a completely different reaction than what you're having. And that really comes through listening and talking to people and understanding people. And I just have to say, I'm not neurodivergent. I'm not representing people that are neurodivergent. I'm just very close to someone that is and have done a lot of research. But anytime there's a design project, I absolutely tell people you need to have someone that is on the panel that is neurodivergent. You need to talk to that group of users.
And even to the point where in past projects I've had for schools for instance, they're like, "Well, none of the kids can speak, so we can't ask them, and they can't be a part of the process." And I'm like, "No, that's wrong." And we've made a little iPad program where these kids work technology really, really well, and they can go in and you can say, "Would you like to sit here or here?" And you show them two different settings and they will make a choice. And we had them do that for all the furniture selections. And guess what, 80% of them all chose the same thing.
And when they walked into that space, even though they had no verbal language, you could see on their face, they knew that they had a part of it. They chose the environment that they're now going to be in. And that was so important to include them in that process versus a bunch of teachers and parents and school administrators just thinking what they might like. So it's about engaging individuals on the spectrum no matter where they are in some way or format because that's who you're really designing to.
No, absolutely. That's really thoughtful. There's been a lot of research about neurodiversity for the workplace, but there are many other environments where neurodivergent people face challenges. Can you speak to the need for research to help inform the design of those spaces and to make them more accessible and inclusive?
Yes. So here's my issue. If we could just be real for a second.
Yeah, of course.
My son who's 27 would never make it in the workplace. There's no way he could sit in a work environment and behave in an acceptable way that today by society norms, it would be acceptable. Now, does he go to a work environment? Yes, he does. He's an artist and he creates all day. But he paces, he makes weird noises sometimes. He says the wrong things to people. And he's in a community full of other people with special needs, so it's totally fine. But I can tell you, we couldn't take those 60 people and put them in a current work environment today because we just don't have those types of programs. We're not that accepting as a society.
So we have to understand that the people that are in the work environment are high functioning. And when you're high functioning, you can be much more vocal about what you want. And hopefully you don't have a complete tantrum or a breakdown when something doesn't work. Sometimes it still does happen, believe me. But when I take my son to the airport, or to a bank, or a movie theater, or a grocery store, there's so many things that can set him off or make us feel not included and that we don't have a right to be there. That's a huge issue for our society in the built environment.
Workplace is really important because that is about processing, but there's some really easy things to do in the workspace. You have to really look at being able to control the environment. Some people seek out bright colors, but the majority of neurodivergent people actually get overstimulated from bright colors, lots of noise, even air movement. And so being able to control more and more of the workspace, which if you look at LEED guidelines or WELL guidelines, that's all in there. It's good for all, right? Sometimes I'm too cold in a space and I need a blanket, and I don't want to have a blanket because I'm at work and somebody else is really hot.
So the ability to control that space, whether that's from noise or lighting, or by the sun, or by people, or by movement, the ability to give people choices in the workplace is really important. And that's true whether you're neurodivergent or not, right? But there is so much work that needs to be done besides the workplace that I think there's so much attention that's happened there, which is great, do not get me wrong, but going into a doctor's office, if you can't get someone to cooperate and go into a doctor's office for a treatment or for therapy, guess what, they're not coming back, nor is the family bringing them back. And then they're not going to do as well, and sometimes have really terrible health implications including death.
So a lot of these situations, it is kind of life and death. Where if you're designing a school, and you have kids that are very suspect for elopement, meaning that they're going to run whenever they can, and there's a busy street, and they can get out of the doors easily and run into the street, it's a life or death situation. This is not a nice to have, wouldn't it be great? It is safety is the number one issue.
So it's a challenge. My son is doing really, really well at 27. He has a career. He's actually a professional speaker. He does amazing amount of beautiful art. But this summer I had him in an airport lounge. And the workers were really efficient, and they took his plate of food when he walked away to get a glass of water. And he lost it. And started yelling and dug the plate of food out of the garbage, which was horrible. And the entire club fell silent, and there was only about 2,000 people in there.
And I'm trying to explain to the workers that they threw away his food. He wasn't done, and now he's really upset. You need to go get him a new plate of food. And they didn't know what to do. And luckily the customers standing around got it right away that something was wrong with my son. He was obviously had autism or wasn't firing all on all cylinders. And so one of the guys just went and got me a plate of food for him. But we were very close of getting kicked out. Very, very close.
And so how that makes you as a parent feel, that individual feel, ostracized, not welcome, doesn't fit in. This is where we have a lot more work to do. And unfortunately it is a lot of the public spaces. It's a stadium, it's a movie theater, it's shopping. It's all these places that can be overstimulating or not customized for people. And there's been a lot of gain in those areas where you can see there's sensory friendly movies or performances, or a lot of sensory rooms going into large entertainment venues, which wasn't there years ago. So that's been great, but there's just a lot more research and work that needs to be done in all of these areas.
And it sounds like the research lives beyond the design of the space. It's the understanding of the people who are going to work in any given environment on how to utilize that space appropriately, and how to react in those types of situations as well. So the research runs and can make a huge impact. I know safety is a really big part of it, but also just sort of helping any individual reach their potential and feel happy and good in any environment is so important.
There's a lot more programs that are doing that now. But when you design a space, and you're doing a LEED certification or a WELL certification, you have to think about, okay, who's going to be cleaning that space, or using that space, or managing that space? It's the same thing for neurodiversity. It's how do you train that staff to understand and recognize when somebody needs extra help or doesn't understand something.
And I think what's hard too is there's visible disabilities and invisible disabilities. And autism and ADHD and some of the more prevalent neurodiverse disorders have a lot of invisible recognition. People can't see that that person might need that extra help, or they look completely fine, so why are they acting so weird? It must be that they're weird, and it's not that there's something else going on in their brain. And that's really hard.
I mean, we've had a long life of, I mean my son has stopped a Major League Baseball game. We have grounded two planes. The airport has a whole new autism program because we've had so many incidents at the airport, I actually involved the local autism support group, and they actually are running autism programs now, so kids can learn what they need to do when they get in a plane and how to go to through TSA. I mean, all these little things that seem simple for most people can completely someone ending up in handcuffs because it's just gone wrong in so many ways.
And recognizing that the space stimulation or even the space recognition can also add to that, and either create barriers or make it easier is really important for a designer. And so many individuals that are neurodiverse are very strong in their visual sense. For most people, their visual sense is their strongest sense, but really it's their communication and their language. Even so, when you have little kids, I've been in so many instances where the children remember where they were when something happened. And so that when they're back in that environment, they know from their memory that environment means this is going to happen. And that's not, as you know, normal, but that's the only thing that they have communicating to them because they can't decipher what's being said to them. And they're like last time I was here, I got a shot. So next time I come here, I'm going to get a shot. And that's going to be a problem because I'm going to fight that because that was not a good thing that happened to me.
And so you can see, you get into all these situations, specifically in healthcare, where it becomes almost dangerous because the children or the individuals know they're expecting something bad is going to happen. And you have to somehow figure out how to divert that, or make it so that there's different pathways to get to the blood draw room so that they don't always remember when I walked down this aisle, this hallway, I end up getting my arm pricked. So it's really interesting when you look at how the brain is working because it's actually quite smart from a visual acuity and a visual IQ. It's just everything else, the social norms, the societal body language, understanding what groups of people are doing, that doesn't get picked up.
No, absolutely. And I think I always like to point out COVID silver linings, and one I do think is that we've all become a bit more empathetic of everyone's life experiences and accommodating differences, whether it be in family dynamics, or home life, or even little kids interrupting Zoom calls, which has happened to me a lot.
Or whether you want to shake someone's hand or hug them, or that sort of thing, which is very helpful for neurodivergent people, who tend to not want to do that. So, oh great, I don't have to shake your hand anymore. Thank God.
Do you see this heightened empathy translating into the design of our workplaces and just our spaces in general?
I've seen it a lot more in public spaces than I have seen in a workplace. And I think because there's just so many more people getting diagnosed. And I mean my son would cause scenes like you wouldn't believe, and people would look at me like I was a bad parent. And at one point I almost got arrested because he was having such a hard time in a store. He wanted this toy and I wasn't going to buy the toy, and it was this huge thing. And he didn't have language. And so when the Paul Blurt mall cop came over to talk to me, he was like, "Is this your mom?" And he said, "No." Because that's the only word he knew.
And luckily this teacher who was a special ed teacher was nearby, and she saw the whole thing, and she recognized that Devin was on the spectrum from the second she looked at him. And so she came over, and she's like, "No, you have to understand what's going on here. I can tell you what's going on here." And my hair was dark at the time. He had blonde hair. So I actually changed my hair to be blonde because of that. They said he didn't look anything like me. They didn't believe he was my kid.
So there's crazy things like that that has happened, and there's so many more of it that's been happening in so many more families. Everyone knows a kid on the spectrum or has a family member that might be somewhere on the spectrum. And so I think there's a lot more understanding and empathy because of the sheer numbers. I mean, when we were doing lobbying in DC, it was a really hard, hard crawl until quite a few senators and people had kids on the spectrum. And then it became a lot easier because guess what? They understood it and they got us the money that we needed to get the funding that we needed.
So I do think there's some of that. And people understanding and recognizing that, especially in a child, a child, they're not malicious. It's just they're having a hard time processing. And I think there's been a lot of discovery of adults that didn't know that they might have been on the spectrum, or that they're a really interesting way of a thinker, and that it's okay to have diverse types of thinkers in your company. There's a lot of research being shown that if you're a manager or the boss, you tend to hire somebody that looks just like you. They remind you of a younger version of you. And that is unconscious bias that people have.
But I think people have started to see that if you're surrounded by a bunch of yes men or yes women, that's not a healthy thing either. And so you do need different types of thinkers to look at things and solve problems in different ways. And that is something that I think has become way more open than it was 20 years ago. So there's pathways, there's a lot of work left to be done. And unfortunately with design, there's not a lot of very solid evidence-based research. I've applied for many grants, and unfortunately always been the bridesmaid, never the bride. But there's so much other work that needs to happen from a medical perspective, from a treatment standpoint, that the design community's not going to get funding from NIH or some of these other large public entities. It's got to come from within the design community, or from adjacent organizations and companies that are very sensitive to this.
And so that's a challenge because we have very little research out there. A lot of it, the best research that has been done is really through observation, and that's not necessarily evidence-based. And one person with autism is one person with autism. They can be very, very different. So what works for my child doesn't work for someone else's child, doesn't work for the other person down the street. They're all very unique people. And so that does make it a large challenge from the design community standpoint.
And I think there's a lot of people, I get designers calling me all the time going, "I'm really confused. I look at this research and it kind of contradicts each other, and I don't really know what I should do." And I'm like, "Have you talked to the users?" "Well, no." I'm like, "Well, that's where you need to start. You need to talk to the people that are working with these kids. Try and talk to the kids, talk to the parents, talk to those users."
You can't design in a bubble. You have to go into these spaces and see and understand what is happening in these spaces. And that can be very enlightening to people. It also can be somewhat scary for people. I've brought group of designers with me when we've gone into pretty severe mental health treatment places where the kids are screaming and being held, and they look completely out of control. And the designers I bring are breaking down and they're crying because they're like, "This is horrible." And I'm like, "But this is reality. You need to understand. This is your challenge that you have to... And we could do it in a different way that doesn't seem so harsh."
Are there any common design strategies that are at odds with creating an accessible workplace?
The biggest one I think that people get really confused about is this idea of stimulation, and especially visual stimulation. You do have some individuals on the spectrum that actually everything they see is a little bit muted and everything that they're interacting with is it's very grayed. Think of living in a black and white movie. It'd just be very blah. And so they actually seek out more vibrancy because that tends to give them energy.
But the challenge that I have is closer to 80% have bad reactions to overstimulation, especially if they're combined. So if you have stimulation from color and lighting and sound or texture, and it's all happening at the same time, then it multiplies. It's not like one plus one plus one equals three. It's like one plus one plus one equals 275. And so the majority of people have issues with over stimulation. If I'm in a school environment, if I'm in a workplace environment, if I'm in an airport, and I have bright colors designed into the space, it's very hard for me to get those colors out for someone that has overreaction. It's very easy to add color though into a space.
And so I always tell people, start with a theory that people are going to be overstimulated. And so you need to control the stimulation and make it as muted as possible. And you can always add stimulation for a worker, a student, a person that needs that. The hardest thing is to take the stimulation out. That is so much harder. So I went into this school in New York City where they had some wife of a board member who was an interior designer who gave them recommendations. And she painted every single floor a different color of the entire school. And they were the brightest colors I've ever seen.
And the teachers would take every piece of paper that they could find to cover up the walls with everything. Because they're like, "The kids can't handle the yellow room, the kids can't handle the orange room, they can't handle the blue room." They couldn't handle... The teachers knew that, but this designer thought, oh, I'm going to design something for kids, and it's going to be bright because that's what kids want. They want bright colors, and it needs to look joyful. And that was the worst thing that she could have done. And the amount of money that they needed to repaint the school was ginormous. And I was like, ugh. So we were trying to help them with funding with that.
So when you're talking about the workplace, think about it. Even if you walked into a cubicle, and you have someone that's really neat and they have hardly any stimulation on their cubicle walls, and they have their monitor set up in a way where nothing's getting distracted. And then you walk into somebody else's, and they have ducks everywhere, or beanie babies, or posters of stuff everywhere visually to stimulate them, that's a personal difference. And so being able to accommodate. But it's so much easier to add stimulation than it is to take it out. So I always default on under stimulating and being able to customize. If somebody wants to be able to add more color, add more texture and things like that, that's very easy to do. It's not easy to take it out.
Absolutely. AJ, how about simple strategies for business owners to update their existing environments for neurodivergent people? Let's say you're not moving into a brand new space. And we want to implement some simple strategies. They've listened to your podcast, and they're ready to make some change. What are some incremental steps they can make?
So probably the best and easiest thing for people to do is to make wayfinding really simplistic done with pictures. And it's funny, I took a picture, we just flew this last weekend. And my son, he takes out that airport safety card, the airplane safety card that has all the pictures of what to do in in a evacuation. And he studies it and he reads it. Because he can read it. It's one of the very few pieces of literature that is out there that he completely understands because it's all done with no language and it's all pictures. And he studies it, and then he puts it back and he folds it away. And I'm like I'm always going to sit next to him when there's an issue on a plane because he'll always remember what to do. None of us are paying attention. We're all watching a movie or getting a drink.
So going into a space where there is pictorial wayfinding as well as language wayfinding is one of the best ways for people to understand what they need to do. And that helps everyone. It helps non-English speaking people, it helps people that are young that are too young to read, and it just really give simple instructions. A lot of the work environments that are maybe more factory or more product related and not a workplace for knowledge workers that are built for neurodiverse people, very much rely on pictorial instructions. So step one, you do this, this, and this. And step two, you do this, this, and this.
If you have ever gone to the DMV, and been so confused of what line you have to stand in, or where you're supposed to go, or been at airport and can't figure out what gate is where, I think we could all benefit with some better wayfinding and pictures. It doesn't have to be fancy. It can be really simple. And there's PECS system, it's Picture Exchange Communication System that all the schools use. It's pretty much all the school districts in the entire country teach this to kids with special ed. So there is a universal language that you can use to create some of this wayfinding or instructions on what to do. And that's just helpful for everyone.
That's super helpful. AJ, thank you so much for being here today. You are incredibly inspirational. If our listeners want to find you, where can they connect with you further?
So it's pretty easy to find me because there's only one AJ Paron in the world. That my book, my books, it depends on which age range you want to discover and learn about, there's three of them on Amazon or anywhere where you can get an e-book. And it's called Interior Design for Autism. And so that's the easiest way. You can find me on LinkedIn. I'm very active on LinkedIn, so I will respond to you. And it's just a pleasure to have been here, Tiffany, today. And thank you so much for giving us the space to talk about this very important issue because we all need to do better.
Thank you so much for your time.
Thank you.
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