99% Invisible - 575- Autism Pleasantville

Episode Date: March 27, 2024

A few years back, journalist Lauren Ober was diagnosed with autism. She then made a podcast about her experience called The Loudest Girl in the World. And she found herself imagining a fantasy world where everything is tailored to Lauren’s very specific autistic needs. And she called this magical imagined place, wonderfully devoid of overwhelming stimuli "Autism Pleasantville.""Obviously," Ober notes, "there’s not a one-size fits all diagnosis or even definition of autism ... as the autism adage goes: 'If you know one autistic person…you know one autistic person.' But despite our wide variety of needs, I wanted to know how design is evolving to better accommodate us" -- how were ideals being handled in the real world.Autism Pleasantville 

This is 99% Invisible. I'm Roman Mars. In 2020, journalist Lauren Ober received a somewhat unexpected diagnosis. An autism diagnosis, to be exact. And unexpected because I'm a very middle-aged lady. I'm loud and physical, and I don't exactly fit any of the autistic stereotypes. Nerdy, quiet, indoors, unathletic, into video games, and unable to sustain eye contact? That's not me. But then I learned that those are stereotypical male autistic traits, gleaned from years of research on autistic men and boys. Autism in women and girls has historically been overlooked. And because of that, my neurodivergent sisters and I didn't realize that we could be so much more

than those tired autistic tropes, but we can. And when I understood that, the cloud sort of lifted for me. A lot of the pieces of my life started to click into place. Lauren even made a podcast about her experience called The Loudest Girl in the World. And she found herself imagining a fantasy world where everything is tailored to Lauren's very specific autistic needs. I call this world autism pleasant, Phil. And it wouldn't have sirens or fireworks or people talking loudly on their phones in public. Also no oppressively bright overhead lighting or spaces pumped with artificial fragrance.

And the foot traffic flow of public spaces would be such that I wasn't constantly touching strangers. Some of these stimuli can be irritating or unpleasant for neurotypical people, but they have the potential to be debilitating for people with sensory issues. Which is why autism pleasantville wasn't some throwaway fantasy for me. And obviously, there's not a one-size-fits-all diagnosis or even definition of autism. Or as the autism adage goes, if you know one autistic person, you know one autistic person.

But, despite our wide variety of needs, I wanted to know how design is evolving to better accommodate us. So, autism and neurodivergence are considered disabilities under the ADA, which means that they are protected by the ADA. I talked with Elio McCabe, Policy Manager for the Autistic Women and Non-binary Network. Elio is autistic and also a lawyer with an expertise in disability rights. So accommodating neurodivergent and autistic people often means thinking a lot about their sensory needs. So what we're seeing now is a bit of a movement

beyond just thinking about physical access and thinking a little bit more about other needs. Lauren wanted to know what it looked like to accommodate people with autism and sensory disabilities. And she had recently heard of a certification program meant to highlight when a city is autism-friendly. That designation is what led me to Mesa, Arizona, the world's first autism certified city.

We are the 36th largest city in the United States. And over the past 20 years, especially in the past 15 years, we've just seen explosive growth in Mesa. That's Mark Garcia. He's the CEO of Visit Mesa and possibly the biggest cheerleader for this desert city of more than half a million people just outside of Phoenix. It's flat and expansive and perhaps not a destination you go out of your way to visit. Unless you're a big baseball fan because the Oakland A's and the Chicago Cubs both

have spring training compounds in the city. Mesa's got some other draws, a few casinos nearby, a surprising number of karaoke bars, and golf, if that's your thing. We're probably the largest city a lot of folks haven't heard about. And that's because we've kind of been in the shadow of Phoenix all these years. I can tell you that Mesa has always been a city with a huge heart. In addition to being Mesa's biggest booster, Mark is also the father of an autistic child. And that means that Mark is very familiar with the challenges of traveling while autistic.

Mark remembers this one time when his son was having a meltdown on a family vacation in Southern California. The hospitality staff definitely made matters worse. And we were made to feel unwelcome. We were made to feel uncomfortable, and I'll never forget that feeling. That feeling of being judged for his parenting

and for his child's behavior. And it was just the looks that you get. You didn't need verbal language. That feeling of being judged for his parenting and for his child's behavior. And it was just the looks that you get. You didn't need verbal language. The body language itself did all the damage possible. And in some small way, Mark wanted to change that. And I said, you know, I would like to train our hospitality staff in Mesa, at least to recognize and become aware of what autism is. And so that's what I set out to do.

With the support of city officials, Mark's organization, Visit Mesa, rolled out its autism inclusion program for Mesa in 2019. It included itineraries filled with autism-friendly activities in and around the city. Also, professional development for folks in all types of industries in Mesa. Health care, education, hospitality, as well as local government. Then these businesses, civic groups, and government offices did some trainings

through a group called the International Board of Credentialing and Continuing Education Standards. I mean, who doesn't love a good credentialing board? The goal of the trainings was to help organizations meet autistic people where they are. continuing education standards. I mean, who doesn't love a good credentialing board? The goal of the trainings was to help organizations meet autistic people where they are. When Mesa hit a critical mass of businesses that had done the trainings,

the city was designated an autism certified city. It was really a citywide initiative. And it made good business sense too, because accessibility needs are rarely advanced because of altruism alone. This wasn't just because it was the right thing to do, And it made good business sense too, because accessibility needs are rarely advanced because of altruism alone. This wasn't just because it was the right thing to do, good corporate responsibility. Yes, that was certainly true.

But for me, this was a business decision. Because autistic people have money and we want to spend it. Presumably more autism friendly businesses and attractions means more visitors who have neurodivergent kids or who have neurodivergent kids or who are neurodivergent themselves. I mean, that's what brought me to Mesa, and I wanted to put the city's autism-friendliness to the test. But that's kind of hard in practice because why, Roman?

If you know one autistic person, you know one autistic person. Correct. So what works for me in terms of noise or lighting or wayfinding or temperature might not work for another autistic person. And it bears mentioning that in addition to having a killer ability to mask, meaning I'm amazing at hiding my weirdo brain differences, I have a subtle presentation of autism. So again, since I'm just one autistic person with one particular opinion,

I invited my autistic buddy Thomas Kaufman along to explore Mesa with me. We met at a cafe on the list of autism-friendly establishments. I realized that not only do you have sensitive ears, but you also work in audio. So you're like doubly sensitive to it. I'm like totally tuned into everything that's going on.

Thomas is a physicist and PhD candidate in auditory and language neuroscience, speech and hearing science, which is a mouthful, but basically means he cares a lot about how things sound. Yeah, I don't think my brain backgrounds anything, like the fridge buzzing in the background here. That doesn't fade into the background. It's just as present as everything else.

I have to make a conscious effort to not have that noise impact my auditory processing. The cafe's loud music and overhead fans made for a really hectic soundscape. Also, Thomas really wasn't feeling the visuals. To wit, the bathroom. It's a strobe light. All you see is pink strobing light.

All this made me wonder what happens in those trainings for autism certification. Like, what are businesses being taught about sensory differences? And have any city stakeholders made an effort to change their physical spaces to accommodate autistic folks? After the coffee shop, Lauren and Thomas headed

to an art center slash museum on the autism certification list. An employee who did not want to be named for reasons that will become obvious later, explain what made the art center autism friendly. Say a blanket. Bright neon stuff. Look at that.

Sunglasses. Some headphones for children and adults. It was a suitcase of sorts, like a pre-made sensory kit from Amazon. Here's a gallon Ziploc bag with a whole bunch of bright neon plastic toys. That's exactly what I was hoping. Not to mention some very stiff ear defenders, like the kind a landscaper would wear while operating a weed whacker.

Of course, I forced Thomas to model them for me. You look amazing. I mean, there's like a lot of pressure on my head, but it's almost like I feel a suction on my ear canals. So it's not a positive experience for you? No, I'd rather use earplugs. Okay, alright, fair. This idea of an autism-friendly city is relatively new, so there isn't a ton of data to gauge whether these efforts are effective.

Still, if we give Mesa the benefit of the doubt, it seems like these businesses are trying to do the right thing. But are these accommodations actually helping autistic people? I mean, case in point. Our front desk friend pointed us to an escape space down the hall where one could presumably go

if they were experiencing sensory overload. That sounds like a good accommodation. You would think that, Roman. Except... Sorry, sorry. Okay, so we're in the toilet right now. We're in the sensory room, which is also the toilet. Just to drive this home, the escape space for people experiencing sensory overload is the accessible bathroom. Cool.

How big is this space? Like this is my wingspan, so six feet. Six feet. About six feet. All right. All right. Six square foot space. Okay. And one seating opportunity.

A toilet. If you put the seat down. Without the back, so you can't like rest. No. When I think of calm spaces, a public toilet isn't one of them. This is not a room you would seek out when you're not having a good time. Our front desk friend wanted to be very clear. Having the safe space, calm space be the bathroom is not appropriate.

Thomas and I left the gallery and headed outside for a little art center postmortem. Well see, now if I go in there, right, like I love galleries. I love art galleries. There's nothing in there that bothers me. It was a very pleasant space. If there's 20 kids in there at the same time, that might be a different situation. I would say that that's, you know, if you're an autistic adult, like, it's a totally reasonable space. I wouldn't ask them for their sensory kit. I was going to say, if it's too loud for you, you can get the earmuffs. I could put on this sunglass.

All of this illustrates the challenge of what Visit Mesa is trying to do. Educating folks about autism is just the first step. And Elio McCabe, the disability rights lawyer, says local businesses and organizations could go even further. So what that can look like is dimmer switches, especially in doctors' offices, where you're already really stressed out and you don't want those glaring fluorescent lights on you. Or it can look like putting up tapestries or things on the walls to dim that big echoey noise. Let's also pay attention to the temperature, because radically changing temperatures can really be overwhelming for neurodivergent people.

Some community partners have put the education component into practice. Two of the city's museums posted sensory guides on the walls, indicating how loud or smelly or bright an exhibit might be. One hotel has adjusted its lobby lights to be more friendly on the eyes. But really, what businesses do with that education is beyond Mark's purview. The Mesa Project shows that there are limits

to retrofitting spaces to make them more autism-friendly. But there are ways to accommodate neurodivergence before a single nail is hammered. It starts by integrating autistic needs into the design process and including autistic people early on in the planning. One architect's doing just that. So my name is Magda Mostafa. I'm a professor of design and architecture for autism. I'm

also a practicing architect in the area of architecture for autism. Magda's being modest here. She's not only a professor at the American University in Cairo and the founder of an autism and neuro-inclusive architecture firm in Dubai, but she's also one of the leading thinkers on the intersection of autism and architecture. Magda created the world's first set of research-based design guidelines for autism. And it all kind of happened by accident.

So it was the classical necessity as the mother of invention. I was approached by a group of parents who had children on the spectrum, young children on the spectrum, were searching for an academic, educational space for their kids and weren't finding something that felt like a good fit for them. Now, it is important to note at this point, Magda didn't have any experience with autism, personally or professionally.

And I very naively went out and said, okay, great, I'll just look into the references and there will be something in a chapter between wheelchair accessibility and deaf space, and I'll find a chapter on autism, get the guidelines and standards, apply them like a good student, and we're golden. Oh, if only it were that easy. Twenty years ago, when these parents asked Magda to design a school for their children,

there weren't any standards or best practices for how to create space for autistic folks. Autism was hardly even talked about. Magda had no reference points. So she created them. I embedded myself in the school for about a year and a half, spent six months just observing and making sure that the kids were comfortable with me in their space. And then we started just tweaking and playing around with things

and building as we go. That observational work was critical to Magda's process because she was getting a sense of how the autistic kids organically use space, what they gravitated towards, what agitated them, what prompted expressions of joy. For example, in those early classrooms and in those early homes and saw kids reorganizing the sofa cushions so they could tuck under it and hide their head when the TV was on or when their brother was munching their lunch or whatever it was that was happening that was annoying them acoustically, those moments became what we call escape space. Lyle McAllister Magda noticed how ingenious the students were, curating spaces to take care of themselves.

She used these findings to inform her design decisions. I call it this autism as expertise model. So what is the expertise that this autistic body is bringing into their own experience? How are they changing their space? The architectural tool Magda formalized based on her observations is called Aspects. That's with two S's at the end. It's an acronym. A stands for acoustics.

I think that's pretty self-explanatory. It's not about creating silent spaces, but it's about allowing sound in an intentional way, not in an accidental way. Give me an SP. SP. SP stands for spatial, as in spatial sequencing, which is about working with routine, making space predictable so you're not jumping all over the place all the time. You're moving seamlessly from one activity to another to another in a sequence. Give me an E. That's for those escape spaces Magda was talking about.

Give me a. I think that's enough cheerleading. Fair. Okay, so C stands for compartmentalization, where you organize a larger space, like a classroom, into smaller, discrete, and separate spaces. And it's not about creating cubicles or booths or partitions, but it's about clustering like activities with like activities. So like plush carpeting and soft cushions distinguish an escape space, whereas a bookcase

and a table with two chairs in a quiet corner can delineate a one-on-one workspace. The T is for transition, like moving from a loud overstimulating space to a quiet focus space. The least we can do is build in a little bit of interstitial transition space, that moment just for sensory regulation for you to take a breath, to readjust, and to set yourself up to be more successful when you enter that next test. And finally, the last two S's. They're safety, which is obvious, then sensory zoning. Basically meaning that spaces should be designed

based on their sensory quality. So if we think of a school design, a low stimulus, high focus math classroom might go next to a low stimulus, high focus English classroom. High stimulus spaces like a music room or a noisy cafeteria shouldn't be in the same zone as the low-stimulus rooms. So, if we were to apply the aspects guidelines to my trip to Mesa, the escape space at the

Arts Center wouldn't be in a high-stimulus area like, say, the toilet. Or if you compartmentalize the cafe Thomas and I visited, you might get an area for quiet study tucked off to one side with no overhead lights or fans. And it wouldn't just be neurodivergent people who would benefit from thinking about design in this way. There's a name for this. It's called the curb cut effect.

It's when systems created to benefit a vulnerable group end up cascading to benefit everyone. Curb cuts are great for wheelchair users, but they're also a godsend for folks pushing strollers or delivery carts. Closed captioning is handy in a loud sports bar, and elevators in the subway are very convenient for anyone hauling oversized luggage.

Now, unlike curb cuts or braille in public spaces or other accommodations required by the Americans with Disabilities Act, there is no government mandate for escape spaces or sensory zoning, at least not yet. Still, there are some new buildings that have been intentionally designed with the autistic brain in mind. Buildings that seem to reflect Magda's aspects guidelines. In 2019, the BBC opened its brand new broadcasting house in Cardiff, Wales.

The architects took neurodivergence into account when designing the interior, meaning color-coded wayfinding, private, quiet workspaces, and absolutely no flickering overhead lights. And in 2020, the new Medical University of South Carolina quiet workspaces and absolutely no flickering overhead lights. And in 2020, the new Medical University of South Carolina opened its doors aiming to be one of the most autism-friendly hospitals in the US.

Elements of the hospital's neuro-inclusive design include adjustable lighting in patients' rooms, private play nooks in waiting areas, and a lush rooftop garden perfect for sensory seekers. But despite this progress, Magna is wary that this type of design could become a sort of thoughtless, meaningless trend. We have to be careful that people don't take the work

that we're trying to do around these autism-friendly design guidance as box tickingticking, virtue-signaling tools. Right. Lip service. Like, we put some lights on a dimmer and ditched the noisy overhead fans. Boom. Autism design solved. But this type of design isn't a one-size-fits-all situation or a one-and and done. It's messy and it's not easy, but it is an opportunity to make spaces more welcoming and inclusive. And isn't that worth a little messiness?

And it's not just on designers and architects and neurodivergent people themselves to think about these things. It's also the responsibility of city planners and politicians to consider neuro-inclusive designs both indoors and out. Pedestrian infrastructure, public space, how people physically move from point A to point B, they all need to be addressed.

Right now, we have a little bit of traction in individual spaces that are becoming aware, but I always say they are islands of accessibility and a sea of inaccessibility. Recently, Magda was in New York City and invited me to meet up with her at one of those islands of accessibility, the High Line, with the caveat that it's a far from perfect model. JARED BOWEN The High Line is the former elevated railroad spur turn pedestrian trail and linear park. The path hovers over the streets and snakes its way between high-end

apartments, office buildings, and a couple of hotels. The first phase of the High Line opened in 2009. And while it quickly became one of Manhattan's most celebrated public spaces, it's not without its critics. One called the High Line a cattle shoot for tourists. Others have rightfully noted that the park has become a symbol of New York City's rapid gentrification. Why did you bring me to this outside space? I've been thinking about a lot how what I do primarily in indoor spaces can spill out

and generalize outside into city spaces too. Because space, as Magda says, can't be defined in a binary way, either inside or outside. Rather, space is more of a negotiation of movement and flow and the transition between in and out. Magda and I met up at a segment of the High Line set off to the side of the main trail.

It hangs a little more than a story over the street and offers a little refuge from the pedestrian traffic of the path. She calls it the perch. If you're overwhelmed and to get that little minute to have a breather and even just rest, sit down, take a moment, I think it's really helpful, but I just wish there was more of it. Are there other spots along here that feel to you like they embody the principles of your work? Like the whole idea of having this parallel pathway that's quieter, softer, has some landscape, has some pockets of space that you can retreat to, I call it a sensory pathway. As we walked, I asked Magda about the diversity

of materials used on the High Line. Part of the path was metal, another part was wood, and still another was concrete. But it's cool because just from a visual perspective, like you're not encountering the same thing. You know, it's not like an endless bridge where you feel like, oh my God, it'll never end. Right.

It breaks it up, it compartmentalizes it. Oh, there you go. See? Explain further. So like breaking things up into these little sensory zones that are manageable, I'm certain that that wasn't the intent, but it just gives you a sense of domain and boundary. So the Highline sort of accidentally

hit some of Magda's aspects design goals. What about from a sound perspective, acoustics up here, like you can hear the city, but it's like at a remove. Right, like we're just walking by this tree. The nature just softens it really nicely. I think all the natural elements do a good job. Once you get to a place where there's wood and that absorbs a little bit more sound than the metal parts. Even if it was inadvertent at the High Line, you could definitely see autism-friendly design in action.

Well, minus the tourists. So designing for neurodifferences, indoors and out, is indeed possible. Magda and her contemporaries who think about inclusive architecture are just barely scratching the surface of autism-friendly design. There's so much more to dream up. After the break, Lauren takes us to the future of neurodivergent-friendly design. We're back with journalist Lauren Ober on her quest to find autism pleasantville.

Or you know, something like it. Okay, we're about to head into some pretty conceptual territory, so bear with me. Basically, if you can design both indoor and outdoor spaces to be neuro-friendly, then it stands to reason that you might just be able to design a whole city using the same principles. And I'm not the only one who believes that. In my practice, I focus on how public spaces can support everyone in a more inclusive way. Bryony Roberts is an architect in New York City. She and

Lindsay Harkema are partners in the feminist design collective WIP Collaborative. We came together about three years ago to work on design and research projects that focus on community engagement and really thinking about the ways that public spaces can be more equitable. They're currently working on a project called the Neurodiverse City, which reimagines New York City's public spaces, that streets, playgrounds, plazas, to better support neurodiversity. Public spaces are typically designed in a way that is quite passive, and they're sort of neutral, generic, you know, kind of a one-size-fits-all. But it's more like one-size-fits-some.

And those some often mean cisgender, white, male, able-bodied, and neurotypical. You know, the default. So, Lindsay and Bryony are working with autistic self-advocates to document their observations about what's working and what's not working for them in public spaces. Like Magda's autism as expertise idea. Some lessons repeatedly bubbled up. Over and over again, we heard about the need for choice,

that the neutrality of public spaces doesn't offer any choice in terms of a range of sensory stimulation, so that if someone is seeking more stimulation, whether it's tactile, visual, auditory, there's very little opportunity for that kind of engagement. And then if we're seeking less stimulation, there's also very few places to find respite and peace. Neurodiversity was inspired by the pair's previous project,

a little sidewalk park called Restorative Ground that they designed and installed during the pandemic. It was in New York City's Hudson Square and definitely did not cater to the default. We thought about creating different zones within the installation that would have different spatial characteristics in order to support the idea of choice.

The 80-foot long electric orange and red structure built on top of the sidewalk had built-in tables and benches, geometric structures that encouraged play, and a hammock that provided some excellent midday napping opportunities. The park was an active environment, meaning it invited passersby to engage with it. It was the opposite of a blank, passive sidewalk. Also, it was a stark contrast to the hostile public spaces Bryony navigated with her dad

after he was diagnosed with ALS. Kind of moving through the world with him made it really clear how powerful space can be in offering comfort or escape or connection to other people and how architecture can really offer a transformative opportunity to improve quality of life. If you take the restorative ground project, that structure welcomed all kinds of users to engage with the space in all kinds of ways.

Resting, climbing, lunching, etc. It was multifunctional and intentional because people have different needs and the look and feel of the built environment should be just as diverse as all of the human identities that are served by it. Lindsay and Brianne haven't built their neurodiverse city yet, but that's not quite the goal. Right now, they're focused on understanding how autistic people use public space. And they're hopeful that other architects, designers, and city planners see the necessity of understanding this too.

This autistic person just wants some calm escape spaces that aren't, you know, the accessible toilet. I am sure they will take that under advisement. And maybe one day Lauren will get her autism pleasant fill and it will dovetail with someone else's perfectly designed space and the curb cut effect will in fact be in effect and everyone will have the space that works for them. Let's not get carried away Roman.

The reality is that there is no universal principle of design that will work for the entire autistic population. But architects like Briony Roberts and Lindsay Harkama and Magda Mostafa are inching the autistic ball up the field. Sure, the autism awareness endeavor in Mesa might be incomplete, but at least it's a recognition that there is a discrete community and that community deserves to be accommodated. Because all of us, neurodivergent or not, are a messy jumble sale of needs. So is my neurodivergent Xanadu just around the corner?

Thinks not. But at least we're in the mix, having conversations about lights that don't flicker and rooms that don't echo. 99% Invisible was reported this week by Lauren Ober and produced and edited by Nina Potuck. Mix and sound design by Martin Gonzalez. Music by Swan Real. Fact checking by Liz Boyd. Cathy Tu is our executive producer, Kurt Kolstad is the digital director, Delaney Hall is the senior editor.

The rest of the team includes Chris Barrupe, Jason DeLeon, Emmett Fitzgerald, Christopher Johnson, Vivian Leigh, Lash Madon, Joe Rosenberg, Gabriella Gladney, Kelly Prime, Jacob Maldonado-Medina, Sarah Bake, and me, Roman Mars. The 99% of this logo was created by Stefan Lawrence. We are part of the Stitcher and SiriusXM podcast family now headquartered six blocks north, in the Pandora building, in beautiful Uptown, Oakland, California, home of the Oakland Roots Soccer Club, of which I am a proud community owner. Other teams may come and go, but the Roots are Oakland first, always. You can find us on all the usual social media sites, as well as our new Discord server.

It's very fun over there. I encourage you to join. There's a link to that as well as every past episode of 99PI at 99PI.org. Hit record on your voice memo now and it's going to be A, S, P, and E. Give me an A. A. We're going to do a second take. I think everyone's muted besides Kelly, which has made this the most hilarious exercise ever. I was like, why is everyone laughing?