Kids Matter!

Inclusion By Design: Helping All Children Belong with Wendy Ross, MD

Alisa Minkin

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In this episode, Dr. Wendy Ross, a developmental pediatrician and "inclusion hero" discusses helping ALL of our children belong in our communities. 
Wendy Ross, MD, FAAP is a clinical professor, developmental pediatrician, and the inaugural director of Jefferson Health’s Center for Autism and Neurodiversity, (JeffCAN).  She graduated from Mt Sinai School of Medicine and completed Pediatrics residency at Yale and Developmental and Behavioral Pediatrics fellowship at Harvard. In her clinical practice, she works with children to clarify and support their development, integrating medical, educational, and therapeutic plans into a cohesive approach. 
In her broader program, her work focuses on improving community belonging by advancing neurodivergent-friendly healthcare, design, and everyday experiences.

Dr. Ross has pioneered programs with museums,  inclusive game day programs Philadelphia’s major sports teams, along with initiatives that make air travel more accessible for neurodivergent individuals. She was recognized as  a Top 10 CNN Hero for her groundbreaking Phillies program, her efforts to make air travel inclusive, and her leadership in research on individuals with intellectual and developmental disabilities during the COVID-19 crisis. This work influenced CDC policy.
She has created spaces that are welcoming to neurodivergent individuals, including contributing to an award-winning line of furniture for medical waiting rooms, now in production with Miller Knoll. She also played a central role in the collaborative design of a medical building at Jefferson and has been invited to contribute concepts to the design of a sports arena.  More recently, she consulted on the show The Pitt, advising them on the development of autistic characters and stories. 


Cover art by Charlotte Feldman
Please note that while I am a pediatrician, I am not your child's pediatrician. This podcast is for informational purposes only and does not constitute medical advice. For any medical concerns or decisions, please reach out to your child’s health care professional.

Welcome to Kids Matter. I'm Dr. Elisa Minkin. As a pediatrician, mom and grandma, I understand how challenging it can be to help our kids grow into their best selves. We are so much more powerful together. Here I will be sharing the knowledge and wisdom of a wide range of people who understand and care deeply about children. I'm hoping for your input as well because kids really do matter. They are our future.

Alisa Minkin

Welcome back to the Kids Matter podcast. I am really, really honored and really, really excited to be interviewing Dr. Wendy Ross today. Dr. Ross is a clinical professor, developmental pediatrician, and the inaugural director of the Jefferson Health Center for Autism and Neurodiversity. Jeff can, she graduated from Mount Sinai School of Medicine and completed pediatric residency at Yale and Developmental and Behavioral Pediatrics Fellowship at Harvard. In her clinical practice, she works with children to clarify and support their development, integrating medical, educational, and therapeutic plans into a cohesive approach. In her broader program, her work focuses on improving community belonging by advancing neurodivergent friendly healthcare design, and everyday experiences. Most recently, she consulted on the show The Pit, advising them on the development of autistic characters and stories. Specifically, Mel, my favorite character. So thank you so, so much for joining me today, Dr. Russ. To me, you are my inclusion hero and I'm really passionate about that as an autism mom and pediatrician. So thank you for everything you do.

Wendy Ross

Well, thank you so much for having me. I'm excited to be here.

Alisa Minkin

This is amazing. So I wanna start with how, how did you get started in this area of inclusion?

Wendy Ross

Well, so I was doing general pediatrics and developmental and behavioral pediatrics, so I had originally like a nice balance of things that, you know what, you're a pediatrician, right? Like an ear infection, a sore throat. Those things are kind of quicker fixes, right?

Alisa Minkin

Right? And.

Wendy Ross

kind of counter balance some of the more chronic, ongoing developmental challenges that some of my patients had. When I moved to Philadelphia, I was just doing developmental peds what I began to see was that my patients and their families were not going out in the community because they had a child. That looked typical but didn't behave typically. And when that happens, people look at you like you're a bad parent, right? So,

Alisa Minkin

So,

Wendy Ross

and then the

Alisa Minkin

and then

Wendy Ross

peers and siblings weren't going

Alisa Minkin

going out and

Wendy Ross

you know, the worlds were just getting smaller and smaller. I

Alisa Minkin

I know

Wendy Ross

start

Alisa Minkin

to start

Wendy Ross

that and I started

Alisa Minkin

and started

Wendy Ross

because that's where kids go to socialize and play. And my patients could neither socialize nor play typically, right? So,

Alisa Minkin

and

Wendy Ross

and then once I got

Alisa Minkin

I got started.

Wendy Ross

and people began to do things that they didn't think they'd be able to do, just gonna be honest, I got like a little hooked on that. So, so.

Alisa Minkin

Well, we're all grateful that you did, and we're gonna get into more what it means to make places more inclusive. But I first wanna talk about what it means, what, what it means to be neurodivergent. And I wanted to find neurodivergent versus neurodiversity, please. 'cause that's a personal pet peeve of mine when they're interchanged.

Wendy Ross

Yeah, well, I think neurodiversity is kind of like the noun, right? And, and neurodivergent is kind of the adjective for an individual, right? So, and what happened in the history of sort of autism and, and the nomenclature is that first there was sort of classic autism, and then there was this umbrella of PDD or perverse developmental disorder. And then there was like Asperger's over here, which were like the little professors, right? And then the diagnostic and statistical manual took, took those away and they made the whole umbrella, just autism with different levels, level one, two, and three from people who need less to more support. And when that happened, the word neurodiversity and also neurodivergent had been around, it's been around for a long time. It was created by Judith Singer, an sociologist from Australia, who herself I think is on the spectrum. And it was reflect the fact that somebody could be neurologically different or divergent or, you know, reflect the whole diversity of minds, right? But not be less, it was more of like a neuro affirming perspective. And I think for a large

Alisa Minkin

A large number.

Wendy Ross

On the autism spectrum, that that can fit them, right? Maybe not somebody with a more profound kind of autism, but a large

Alisa Minkin

A large number of.

Wendy Ross

And the truth is we do need all kinds of minds, this word started to get more and more used once we removed Asperger's. Because you know, it sort of took on that, that reflection of sort of what used to be that Asperger's profile so people use neurodivergent because neurodivergent literally just means different neurologically, it came to also encompass other people whose minds think differently, who process language differently, with their environment differently. So this could include somebody with A DHD or traumatic brain injury, or somebody who's just aging. And that sort of became more widely used. And it's interesting 'cause even the people who previously maybe would've been identified as having Asperger's. Began to really take to the word autistic, and in fact, really seemed to prefer this was also a shift from being called a person with autism to an autistic person. Now, not everybody prefers that, but a lot of self-advocates are quite vocal on that point. So I think a lot of things have been changing in the No, you know, and what these words mean and how they're perceived.

Alisa Minkin

That's a great explanation, a great little summary of the history. I wanna talk a little bit about the, you talked a little bit about person first versus diagnosis first, and I think that reflects the ideology of identity

Wendy Ross

Mm-hmm.

Alisa Minkin

versus disability. And so I want you to talk a little bit about that. It's, I know it's controversial. We're not gonna talk about anything controversial here today. This, this is not a controversial interview.

Wendy Ross

Well,

Alisa Minkin

wanna stay just very basic about this, you know what I mean? Like, why would someone prefer to be called autistic and why would they not?

Wendy Ross

Well, I think, and again, you know, we'd have to really ask a self-advocate this, but I think, you know, they don't see their autism as a disability. It's just a difference for them, and it's an integral part of who they are and how they interact with the world. And so they, they think it's not something that, that, that is with them is something that's a part of them. So they prefer identity, first language. And

Alisa Minkin

Language.

Wendy Ross

also reflects on sort of social construct of how we see people. sometimes when you think, you know, it's this idea that people may not actually have a disability per se, but what they have if you look at it in a different way or reframe it, is sort of a difference between the world around them, like a mismatch and themselves, right? So for example, if everything were situated lower than it would be people not in wheelchairs, that would be at a disadvantage, right? So it's this idea that there's a mismatch, not that there's a lesser so I think a lot of those things are intertwined.

Alisa Minkin

That, that's a really good explanation and it'll bring us to what you do for inclusion down the road for different environments. We're gonna talk about that, but I wanna speak to clinicians right now because this shift requires you to change your lens, right? You if you look at everything as a disability, right? That can be problematic for seeing the whole child

Wendy Ross

Yeah. Yeah, I agree. I mean, I think to some extent we always wanna presume competence and, and look, I'm humble enough to know that even my perception has changed. So I've been doing this now for 25 years and kids that were non-speaking we kind of assumed that that meant that they didn't understand. Now that they

Alisa Minkin

now, that they

Wendy Ross

to communicate, we find that they did understand quite a

Alisa Minkin

quite a bit, right? So,

Wendy Ross

I think,

Alisa Minkin

I think

Wendy Ross

I am

Alisa Minkin

I,

Wendy Ross

in this

Alisa Minkin

in this.

Wendy Ross

and as things are evolving and I'm very hesitant for example, to your point, to even provide sort of this level system in my practice, because I've had patients now that I'm old, were maybe non-speaking until the age of four, but now are in medical school. So if

Alisa Minkin

So as somebody has sort said from

Wendy Ross

know, your

Alisa Minkin

Know Your Child is

Wendy Ross

need or low functioning? Like, would that

Alisa Minkin

when that child had

Wendy Ross

the same

Alisa Minkin

been afforded the same opportunities

Wendy Ross

to get them where they

Alisa Minkin

to get where they are today.

Wendy Ross

So look, I, I'm not at all denying that there are people who have really significant amounts of autism

Alisa Minkin

Autism,

Wendy Ross

true disability, you know, so I also don't wanna discount that. I do also think that there's other people on this big spectrum that, like for them, they, it is more of a neuro divergent situation.

Alisa Minkin

absolutely. And I wanna clarify, we're talking about level one, level two, level three, autism, which is a newer kind of construct and it's supposed to be about support needs, but it often gets reframed as, how autistic are you? That's a problem.

Wendy Ross

It's a problem because even people who, you know, and I don't love these terms, but you know, people say high functioning, low functioning, you know, but even people who are considered sort of in quotations, high functioning, you know, can really have significant challenges. Like we did a

Alisa Minkin

Right,

Wendy Ross

with Autistic Doctors International, which is an amazing group started by Mary Doherty and, you know, a lot of the physicians in that study sadly had dropped out of medical school or had suicidal ideation or suicidal attempts. And so I wouldn't say that that's low need actually, just because somebody has cognitive strengths and was able to access their academic curriculum. I, I don't know. I mean, I think it's a different way of having needs, but I wouldn't say it's less.

Alisa Minkin

right. It's really important that you said that. I really wanna underscore that because part of the way we look at it is we look at, what do I see?

Wendy Ross

Mm-hmm.

Alisa Minkin

I see someone who doesn't speak, or I see someone who's flapping, or I don't see anything wrong with that person because it can be such an indivisible disability. It's so individual. It's my favorite line is the most quoted line with Steven Shores line is if you've seen one person on the spectrum, you've met one person on the spectrum. I'm messing it up. But that's the basic idea, DIA.

Wendy Ross

person that you know, one person that that is true. Because while when we think of autism, we think of differences or challenges in communication, in social skills and in behaviors. And usually sometimes when we think of the behaviors or the special interests, but we also think of like a sensory component, right? Sensory seeking or sensory avoidant. But how that can be presented in an individual can really vary between people and even within one person, right? Like I could be seeking in one way and sensory avoidant in another way. So it's really variable.

Alisa Minkin

And not just that, but you on one day can do something and the next day not.

Wendy Ross

Right. And I think that has a lot to do with, you know, this idea of getting burned out, but it can also have to do with sort of executive functioning. And I think executive functioning is something that's more and more we're talking about as a part of A DHD, but also a part of autism. And it's about how we organize and re retrieve skills that we need to execute a task. Right? So when I'm explaining this to parents. you know, when a child can do something one day and not the next day, the assumption is that they're not trying. Right. But sometimes it's sort of like they have that skill, but they don't know where they put it. So I'll describe that. Like, you know, you have your silverware drawer with those little, there's like a little section for your knife, your fork, your spoon, and you don't even, you, you know, you've muscle memory for it, right? But then imagine if all your silverware were just thrown in there, so you know it's there, but you can't re you know, get it efficiently and, you know, and, and utilize it. So, so executive functioning is really important and it is generally a part of the, the autistic profile.

Alisa Minkin

I love that 'cause you just took the spoons methodology and added another level. I have the spoons, I just can't find them. Right. The idea of spoons is do you have enough spoons? Do you have enough bandwidth?

Wendy Ross

Yeah.

Alisa Minkin

Which is very commonly used with people on the autism spectrum who have run out of spoons, right. Who don't have the bandwidth to, to do whatever. So it's interesting because I wanna talk about the inclusion projects you've done, but I just wanna have the idea out there that inclusion just doesn't just mean physical inclusion. Right.

Wendy Ross

Right. I think this is really important. I think the Americans with Disabilities Act, of course, covers the nor neurodivergent population or people, but there are no guidelines, so it's much harder to enforce it. And sometimes what happens is people will stick in a sensory room and check a box. And it's not that sensory rooms are bad, but what's bad is that they're the only option because they're segregated, they're not truly integrated. so it's good to have an

Alisa Minkin

Have an option like that.

Wendy Ross

can be a little bit performative at the end of the day. Like surely we can have better options along with that. Right. So, it's also interesting 'cause the terminology for this has also been changing. You know, we used to talk about

Alisa Minkin

Talk about accessibility.

Wendy Ross

And then we sort of talked about inclusion, I was talking to Jennifer Cook, who's like an amazing self-advocate and author and, and now she's on love on the spectrum, and she's just amazing. And, you know, she and I were talking and she was saying, you know, inclusion is actually kind of patronizing, right? It's kind of like, I have something and maybe I'll let you in. You know? So she and I were

Alisa Minkin

She

Wendy Ross

about this and we really prefer sort of the term or the word belonging, right? Because it's sort of like we all have a, a spot. It's not

Alisa Minkin

love it.

Wendy Ross

making a spot for you. Like your spot is here.

Alisa Minkin

Right,

Wendy Ross

You know?

Alisa Minkin

right. And that, that's gonna take time. Right. So I wanna hear some of the things you've done to make places more inclusive or help people belong to use your terminology.

Wendy Ross

Well, I just wanna start, like, there's sort of a cultural shift, right? Like

Alisa Minkin

Mm-hmm.

Wendy Ross

that if you have a, a disability or a challenge that manifests as a behavior or something like that, that somehow the, the onus or burden is on you. Like, you would never say that about somebody in a wheelchair. Like if there was no curb cutout or ramp, it would be obvious to you that there was something wrong with the setting. Right? But for people with intellectual disabilities autism, somehow, that hasn't been the way of thinking. And so, you know, we have been seeing that shift quite a bit. I mean, I've been doing these types of projects for almost 20 years and, you know, we talk about this like a, a, a ramp, you know, but it's a ramp of sort of understanding, skills sensitivity, patience,

Alisa Minkin

Kids, you know, it's

Wendy Ross

all these other things that really make up empathy actually.

Alisa Minkin

actually

Wendy Ross

just like a

Alisa Minkin

just like a regular vandal.

Wendy Ross

wheelchairs, but benefits people. With walkers or strollers or delivering things, then, you know, this type of ramp really does benefit a lot of other people. Right? And at the hospital, when we

Alisa Minkin

hospital

Wendy Ross

about neurodivergent affirming or friendly healthcare or

Alisa Minkin

care, whatever,

Wendy Ross

you wanna call

Alisa Minkin

whatever you wanna call it,

Wendy Ross

know, it's the kind of

Alisa Minkin

the kind of that

Wendy Ross

really have to have, but that everybody kind of benefits from and deserves. And

Alisa Minkin

And

Wendy Ross

it's

Alisa Minkin

so it's just

Wendy Ross

to some extent because it requires you to, sort of take an extra few minutes to be more curious than judgemental and to take in a little bit more of what your eyes, as well as your ears are saying, and to incorporate caregivers in a considerate but mindful way. You know? Because a lot of times caregivers do know their people. I mean, you don't wanna exclude the individual, but neither do you wanna block out a caregiver, especially if know when the gestalt is that they should be included, right? So think there's a lot of nuances to this. I think. just going back, I'm sorry, I got off on a tangent. But,

Alisa Minkin

It's fine. This is great stuff.

Wendy Ross

I

Alisa Minkin

it.

Wendy Ross

started to work with museums and initially it was a little bit of a, a tough sell, but I tried to convince them, you know, play is considered a human right by the United Nations. And I said they were denying my patients their human rights because they couldn't safely or in an understood way at the museums. And that did actually not work. But, but the museum conferences were coming to my town and I submitted panels. so it was an easy way for people to be included on a panel. So then one by one they started to participate and it involved, you know, we have kind of like a model. So we prepare the families or individuals and then we prepare the site and we also provide resources. So for the families and individuals, we would provide like social

Alisa Minkin

social

Wendy Ross

by Carol Gray. We would create. Visual schedules, and sort of like a plan, you know, way of planning so people knew what to expect

Alisa Minkin

events

Wendy Ross

we would provide some crossover hours. So it wasn't just a totally separate day, but it was like an early opening, a soft opening that transitioned into the regular hours. then we would also you know, educate the people working at the museum and provide

Alisa Minkin

and

Wendy Ross

just some foundational knowledge. I mean, we didn't expect them to be autism experts.

Alisa Minkin

they

Wendy Ross

them to have a, a sense of

Alisa Minkin

sense of,

Wendy Ross

and some

Alisa Minkin

and.

Wendy Ross

and strategies and tools in their tool belt. And, you know, we made some sensory accommodations on the sites and, you know, for some people you know, the, the kids. it was just kids, and then it became more adults as well. But some kids, like at the Natural Science Museum, they knew everything there was to know about dinosaurs. Okay. But they couldn't tell a narrative or have a reciprocal back and forth conversation. So for them, we started a docent program, because when you're a docent, have to sort of be able to tell a narrative and have a reciprocal conversation. So we leveraged their special interest as a motivator, right, to like,

Alisa Minkin

Love it.

Wendy Ross

so that was one thing. And then for people who were on the other end, we did other things. So like we would make bags of manipulatives and have them match the manipulative. So at whatever level you were, there was some way for you to access the museum, whether it was by just getting you in the door and to experience something related to its content, or it was leveraging your special interest to help you build a life skill. So that's sort of where we started. And then when we were at the national conferences, the Smithsonian invited us and we were like a little team. It was myself, a psychologist and occupational therapist, and a speech and language pathologist. We were a little inter interprofessional group. And then I had a patient that got stuck on a flight and we had prepared this family for their trip to Disney. But what I didn't anticipate was that the airline was Southwest, where you're not necessarily assigned a seat. So on the way home it became impossible for the whole family to pre-board together because people thought they were taking advantage, you know? And when the mother and the, this one child pre boarded, she got very aggressive 'cause she didn't understand right, like where the rest of her family was. long story short, this plane took off without this family of fives. The plane had all their car seats, everything on it. And so I was very upset. I don't usually get very upset. so the, the airport wanted me to sedate this child and I was like, we're not, I don't even sedate kids on the ground, so I'm not gonna sedate them. In the air. So I said, you know, I think we just need to let them pre-board as a family, right. And see what happens. And so we did get them home, even before that, I also called Philadelphia International Airport. I was really upset and I spoke to the a DA coordinator there who was an amazing guy. And I said, listen, this did not happen in Philadelphia, so I'm not, but we really like, we need to do better. Like I'd really love to come in and educate TSA airports and airlines and prepare families and have mock flights. So we had the first kind of mock flight experience anywhere at PHL and, and that was really cool. And then people started to be able to fly. for some families, they just needed to be familiar with the process. But for other families, well, we provided support for all the families, but some families really required sort of that level, like some support to help them problem solve or troubleshoot on site. So every family had somebody and then Senator Ladenburg from New Jersey had us come to Newark and we started to work with the Department of Transportation. and we, we created the TSA Cares hotline you know, was inspired by this work that where anyone can call that hotline and get help traversing TSA. So yeah, that was really fun. And you know, because travel is so much more from how you get to, from one place to another, it's really about opportunity. And that's the Secretary of Transportation at the time Hood said that was such a great quote. And then I really wanted to get in with the sports teams. 'cause anyone who's been to Philly knows that our sports teams are like a very big deal. Not that they're not a big deal everywhere else, but Philly fans are special, right? They have their own. So I got in with the Phillies first and we started a game day experience. We trained. All the staff at the park, we prepared families and we brought families to games then it was the Eagles and then it was the flyers and the Sixers are in the same building. So we were able to do a lot of that work. And so it's just this model of preparing the family or individual, preparing the site and then hosting a supported experience that hopefully would lead to a follow up more independent experience. that's sort of what we do.

Alisa Minkin

Level that. And when you say a supported experience, do you mean like autism game night?

Wendy Ross

Yeah.

Alisa Minkin

what you're talking about?

Wendy Ross

just do a game night. We would get tickets to multiple games throughout the season and we would bring families. So each family would be assigned like an OT student or a speech and language therapy student or an actual therapist. And we would all go to the game. It wasn't just on a special night because you know, in real life we don't just go on one night, we go

Alisa Minkin

Right,

Wendy Ross

Right. So

Alisa Minkin

right,

Wendy Ross

to really try to do other nights.

Alisa Minkin

right. That's what I'm trying to bring out. As you mentioned before, the segregation approach to me, however well-meaning it is the sensory room or the, the, you know, game night for autism where it's autism friendly is a segregation approach. Right.

Wendy Ross

Yeah. I mean,

Alisa Minkin

I'm not saying it's all bad, I'm just saying

Wendy Ross

I don't think there's anything wrong with that. I

Alisa Minkin

Right.

Wendy Ross

is that people stop there,

Alisa Minkin

Exactly.

Wendy Ross

now, like one of the reasons I really wanted to be at Jefferson Health and Jefferson University is that. I am officially stationed on the health side 'cause I'm a clinician. However there's a university not just for healthcare but for design. So we have fashion, interior design, architecture, industrial design, immersive, light-based art. And in those courses what we do is we integrate health design and most importantly the community. we ask the community first what they want. We don't try to just guess and do something and then get them to say nice things, kind of shoehorn it, right? Like really concerned about incorporating perspective. And we designed a lot a line of furniture for our medical building with Miller Knoll. And one of the things that we did with each iteration of that seating we brought in individuals with IDD and or autism, but we included nons speakers and we would videotape them and code their behaviors and like low speech people, like people who would just echo. they would say, we'd ask them if they're comfortable and they would say yes, you know, but they would look obviously uncomfortable. So we were like, okay, we need to do better, to, to get their perspectives. But Jefferson is a really remarkable place because I heard a few years ago that they were putting up a specialty pavilion, so a building for, you know, cardiology, pulmonology, oncology, so that if you had multiple conditions, you didn't have to go to this office on, you know, 11th and Chestnut. And that office on 10th of market, like it was all in one building. So I heard about this and I went to my boss at, at Perkin, who's like, amazing. And I, I had a whole slide deck ready. I had a whole like, pitch and I'm like, you know my population is never considered from the beginning. Like they're kind of like an afterthought in these designs. And could we possibly like, do focus groups and interviews and try to get some perspective from them, you know, before this building is designed.

Alisa Minkin

Literally get in on the ground floor,

Wendy Ross

yeah, literally, literally on the, on the sub in the subbasement, you know,

Alisa Minkin

so.

Wendy Ross

and yeah, and the foundation. And, and before I could even take another breath, he was like, yes. Like, let's do it. And I didn't even have to show him all those slides. And that's one of the really special things. I don't mean to sound like a commercial, I mean this like sincerely about Jefferson, I mean. No place is a hundred percent perfect, but one, the things that drew me to Jefferson were the mission and vision to improve lives, do the right thing, be inclusive, and be innovative. And the other was the school of design, because I had been working on processes, but the built environment because of the sensory issues can be impactful. So I'm not a designer, so I knew I needed designers, so I really badly wanted to be at Jefferson so I could have access to they have an amazing center for architecture and the built environment, but now it's gonna be expanded to Indu, you know, industrial design is going into there. But we also have an an adaptive fashion class, is outside of that umbrella. And really been just a lot of fun.

Alisa Minkin

That's incredible. Can you give some example? 'cause people may be thinking, what, what adaptations, what are we doing differently?

Wendy Ross

So it depends on what you would ask about. So in that building, we designed a line of furniture that has some like I don't, walls sounds bad, but like some, you know, coverage, right? So that you're not totally exposed, which frankly, a lot of patients prefer. You already feel very vulnerable when you're a patient, right? So sometimes you wanna be a little encapsulated. And we created semi enclosed alcoves that made of a, a natural kind of wood material. They have a really good texture. They let us pick a lot of textures in this building. They let us pick some lighting we got to help with. The exam rooms are really cool. They, the, the chairs check your weight, which takes away an entire transition if you think about it. the weight gets imported directly into the electronic medical records. So nobody's shout, nobody. I mean, I don't know personally anyone who wants their weight shouted out like. Okay. And then when you check out, a live person will come on the screen in the room so that you don't have to, let's say, go to the waiting room and stand on another line in a crowd of people to get your follow-up appointment. So there's so many things. I mean, I can't even list them all right now. I would take up the whole day. But we have bathrooms with adult changing tables. I mean, there's just a lot. we have a piece of amazing artwork by Cam Bell Smith, who's an autistic young man. He's an award-winning artist, and it's a model of the building, which we commissioned to also point out that there's a strength based perspective here, not just based. So there's ambassadors in that building that help everyone. If you're lost or need assistance of any kind, there's sensory bags that you can access. we really try to think of a lot of things, and we really try to do a lot of training because at the end of the day, especially in

Alisa Minkin

So that she.

Wendy Ross

sometimes we get bad news, right? And. There's nothing we can do to change that, but just being kind and patient can make a huge, huge difference. So so that's sort of one category, but we just had in our we had an adaptive fashion class. I'm trying to change the name because it's not sexy, that name, but I'm gonna, I'm campaigning. But anyway it's a required course. Now we usually have about 60 students a year in it, three classes of 20. And we have clients who either have some, you know, autism you know, some might be in a physical disability as well, or, you know, so, and the students are learning to design for them. And, and the, you know, the clothes for the autistic individuals might be really sensory friendly, but really stylish, not basic, right? So, I, we had one little guy who really wanted to wear leggings, but like, his mom didn't want him just to wear leggings 'cause like. Little boys sometimes don't wear leggings, you know, I mean, they can, right? But, there's sort of leggings on the inside and cargo pants on the outside. So, you know, we, we made a lot of different fashion. We have immersive light-based art, and that was a course with Lynn Godly who's amazing. And this is artwork that is animated with light and it's super calming and it instills a sense of awe. We're starting to look into its impact. to their credit, the hospital bought 11 pieces of this art and put it into that new building. So there's all

Alisa Minkin

There's no different,

Wendy Ross

we also consult, so if anybody wants a neurodivergent consult on their building, you know, we can take a client on for a course. So we have courses. We created a, a neurodivergent friendly residence hall at St. Joe's University. You know, so that was

Alisa Minkin

but that was the number.

Wendy Ross

clients. So there's a lot of things and, and we do get hired. So like the Pennsylvania Supreme Court, justice Dockerty had us come to try to make the family courts more autism friendly. So we did some things with design and with just education across the state for that project. So there's a

Alisa Minkin

It's really important because it's not uncommon because parents often have to get guardianship or similar things for their autistic kids, and they're often asked to bring them there, so that, that's really important.

Wendy Ross

Yeah,

Alisa Minkin

I mean, it's all important. And I, before I, you've been saying so many good things. I have so many, a couple things I wanna put in. No, you're great. I'm just listening and all like my hair is one thing is you brought up over and over subtly the idea of universal design. So people think, oh, we're doing this for a very specialized group and we're spending all this resources and money. No, it's better for everybody. A lot. Not all. Maybe not everybody needs a adult size changing table. But a lot of the things you mentioned, you mentioned how it can be helpful for a lot of people. Number two, if you're not talking about just the tip of the spectrum, the most obvious, and you understand that neurodivergence is actually common, right? Like what percent of the population would qualify, would, is there a number

Wendy Ross

many I don't, you know, you know, it's hard to tell. I mean, and some people really don't know that they're neurodivergent, right?

Alisa Minkin

right?

Wendy Ross

so it's hard to say.

Alisa Minkin

Right. But we all have all kinds of needs. We have neurodiversity, which means our brains are all different. We all have strengths and weaknesses, and it's accommodating a lot more people. That's the concept of universal design, like you said, like a curb cut could be not just for a person with a wheelchair, but for a person with a stroller. So we do it for everybody. Right. Would you say that's a fair use of the term? Universal.

Wendy Ross

think so. Yeah.

Alisa Minkin

Okay. And one other thing, I wanna go back because I, I, I feel like I didn't, I didn't misspeak, but I wasn't nuanced enough. When you have something like autism night and everybody there are families with, with kids with autism, kids with autism, that can be phenomenal. It's not just, it's okay or it's not good enough, or it's not enough. Different people and different families need different things. Right. And it's all about, like you said, belonging. There's different ways to belong and you might wanna belong to your sub community. You might wanna go on autism night, so you can be with all the other families where you don't have to. Or also your kid can behave a certain way and it, it's okay because

Wendy Ross

It's

Alisa Minkin

it's not always okay. Right. You may, you may be able to coach some kids and families into attending a regular game, but they might not be able to with all the accommodations. Right. Would that, would that, would that make sense to you? Yeah.

Wendy Ross

that does make sense.

Alisa Minkin

So different, different options I think are all important. So I didn't wanna make it sound like segregated programs are, are lesser or not good. They just shouldn't be the only thing out there.

Wendy Ross

Yes, absolutely. Yeah.

Alisa Minkin

Yeah. So I want to actually pivot to what things can regular people do to be more inclusive and also places that don't have the ability to do the kind of design you're talking about, or people don't have access to those kind of places.

Wendy Ross

I, I'm sorry, can you rephrase that?

Alisa Minkin

Sure. So. When I hear these things, I think of, oh, this is so ideal and this is so beautiful, and not everybody has access to those places, right? What if you are living in a community and you just want to be as a regular person, you wanna be more inclusive and you don't know how, or what if, say you work in a pediatric practice and you can't get it redesigned, but you wanna be more inclusive and more, have people belong?

Wendy Ross

yeah. I think at the end of the day, you know, we try to work on the design, but I think some of the most important thing is that. Look, the most important asset for belonging or inclusion is our, is our empathy, right? And I think that like, just being really patient and kind like there's no sub, there's no design substitute for that actually. So.

Alisa Minkin

You may not be able to accommodate, say the way your waiting room is, but you might be able to accommodate, say, the time of the appointment. So I brought somebody into my pediatric practice who is an expert in autism and advocacy, and worked with the entire staff to be more sensitive, more empathic and more understanding. And we would do things like, okay, this is a kid on the spectrum. We're gonna have first appointment or last appointment, or we're gonna meet them at the base of the stairs because he couldn't come upstairs and we're gonna get what we can done there. Right.

Wendy Ross

Yeah.

Alisa Minkin

Or we're gonna, we're going to do the visit and the waiting, whatever. We've done different things. We've modified it in different ways in order to accommodate, be as accessible as possible.

Wendy Ross

Yeah, and sometimes it's a matter of desensitizing somebody,

Alisa Minkin

Right,

Wendy Ross

you bring them in first just to see the space. You bring them in the second time and you just put the cuff on their arm. You bring them in the third time, then you squeeze the cuff. You know,

Alisa Minkin

right.

Wendy Ross

takes a long time and, to, to work on this. And I think that, you know, being ourselves flexible is, to your point, really important. And also sometimes to just be attuned or to join somebody. sometimes if a child is doing something to sort of just, you know, if they're under the table, to your point Exactly. Go under the table and sit with them for a minute. Like, don't just you know, and to really ask the parent like, what works best for your child? Is it better if I say what I'm gonna do or is it better if I just try to do it real fast or is it better, you know, because parents are experts on their person, know,

Alisa Minkin

What would you say to say, a clinician who says, I really wanna do this, but I'm just not so knowledgeable or comfortable.

Wendy Ross

Well, I think, you know, there's all kinds of ways to get comfortable, right? Like if you have already families in your practice, you could talk to them or you could go to a nearby university where there's developmental peds and see if there are lectures or grand rounds that are happening, or, you know, reach out to the Autism Society of America or Special Olympics. Like, there's all kinds of ways. think part of the issue is that people sometimes don't know what to do, but I think also, they don't always have a lot of time for patients. But if you code on the billing sheet, not just like if a patient comes in for an ear infection, but like an ear infection and autism, then you can bill at a higher decision making and more time. So then hopefully you're getting compensated for some of that extra time that you're investing.

Alisa Minkin

Right, and you can also make a separate appointment. I'm a huge fan of making separate telehealth appointments Without the child. You can focus better, you can take more time, and it's a different visit because there's only so much, no matter how you code, that can be done in a unit of time.

Wendy Ross

Absolutely.

Alisa Minkin

is not elastic. All the other patients are sitting there in the waiting room waiting, and we have to acknowledge the time burden that clinicians have nowadays.

Wendy Ross

Yeah.

Alisa Minkin

Right?

Wendy Ross

your point, you know, getting the parental history on Zoom beforehand and then just having the visit focus on the aspects of the physical that you need to do. just always worry about diagnostic overshadowing too. So, not that you would ever do that, but we see that so much where our kids don't actually get examined sometimes, like, especially in like an urgent care, an emergency situation, like a behavior will escalate. You know, like headbanging will increase and. You know, the clinician might say, well, they're autistic. They bang their heads, you know, but it turns out they have an ear infection. Right. And I'm sure you would never do that. I'm just saying that like, we have to be really careful to, to do the exams maybe in different ways, but not to not do them.

Alisa Minkin

If you can skip the exam, and you also have to keep asking, the parents tend to know their kids best. What do you think? What do you feel? What's your experience? What has changed? Right? And, and understand that autistic behavior is behavior is a form of communication,

Wendy Ross

Yeah.

Alisa Minkin

right? What is the child communicating? Not just, Hey, I'm autistic, but something hurts me, for example, right? That

Wendy Ross

does that

Alisa Minkin

yes,

Wendy Ross

Right? Yeah,

Alisa Minkin

right.

Wendy Ross

And I do think it's really, really important to, because to exactly what you said, parents do know their kids. You know, there was a study that showed that mothers of kids with autism, I mean, it could be dads too, but the study was literally moms. So I'm just gonna say what the study was. Have as much stress as them as soldiers stationed in combat zones, and it wasn't. by asking them, it was by looking at the cortisol levels. So I think sometimes

Alisa Minkin

Oh God, yes.

Wendy Ross

in hot because they're used to arguing with schools. They're used to, you know, negotiating for IEPs. Like they're constantly vigilant you know, protecting their child. And then, you know, sometimes they, they, you know people don't listen to, they, they are experts in their person, right?

Alisa Minkin

Yes. Louder for the people in the back. The autism moms and dads are experts on their kids. Ask them. It's, it's very frustrating as an autism mom, you know, to have felt sometimes someone talking down to me like, you're not asking me. You're telling me, and I know what you're telling me already. And I know a lot more, not just 'cause I'm a physician, but because of my being an autism mom.

Wendy Ross

Yeah, I think it's really important because, you know, people know when you're patronizing them or not listening to them, or you're looking at them like they're a crazy anxious parent when in fact they do have really important information, to portray. 'cause you might be an expert in the medicine, but they're an expert in their person. And so it's really important to collaborate with people. And if people do come in a little bit hot, you know, to respond and not react right. To sort of understand where, you know, how you can best again, meet with them, join with them.

Alisa Minkin

Right. And it might take another visit and it might take you walking outta the room and again, catching your own breath.

Wendy Ross

Mm-hmm.

Alisa Minkin

okay. And also back to the patient, the child, the autistic child, or young adult or adult, not to forget them, even if they are non-speaking. I love this new word, non-speaking as opposed to non-verbal. The idea being that just because I have, I'm not saying anything, doesn't mean I have nothing to say. Nothing to communicate, right? And that they may be understanding every word, but even if they don't understand every word, they're a human being. They're in front of you and involve them as best you can as another human, right? It sounds so obvious, but sometimes people don't know how. And I think my answer to the question I asked you before is just keep doing it. Because the more you do it, you'll get more comfortable and you'll learn more as you go. And just keep asking,

Wendy Ross

Mm-hmm.

Alisa Minkin

right? Ask the autistic person, ask the parent. Ask everybody you can possibly ask

Wendy Ross

Yeah. I

Alisa Minkin

and keep learning,

Wendy Ross

yeah, to approach with humility. Like I, I

Alisa Minkin

right?

Wendy Ross

I fully acknowledge mistakes I've made, like when I look back my developmental pediatric life. Like I realized for example, like there are some girls that I've missed, you know, and that now I would better understand as being on the spectrum, but it just presented differently.

Alisa Minkin

But we're learning more as we go along. And I love Maya Angelou's line of do the best you can until you know better. When you know better, do better. Right? We're learning, we're learning more about the wide spectrum of autism and all those male people who told us what autism is, have colored it one way. That's a whole, that's a whole separate podcast. I wanna go down a different day. But you can't blame yourself. You, you remain humble and you keep learning and you keep, you know, starting each new day with that new knowledge. Right? That's all we can do.

Wendy Ross

Yes.

Alisa Minkin

Right. So speaking of females on the spectrum, can we talk about the pit please?

Wendy Ross

Yeah. Yeah. So that was really a, a big surprise to me. So, there's a group at the University of Southern California that attaches like subject matter people to entertainment people. And they reached out and said, there's this show in an emergency room with a doctor that's autistic and they, we don't want like a, a savant kind of doctor, you know, and, and could you speak to them? And that was all the information really. I had, I don't think the show had a name or was even a hundred percent picked up or was a couple years ago. And I logged in and there was you know, writer's room and then there was Noah Wiley. So that was really shocking. Yeah, and we talked about this character and, and they used everything I suggested. And most importantly, I also told them to reach out to Jennifer Cook, who's a, a self-advocate. And they also did that and she's consulting a lot on the second season. On I, and you know, especially like Mel's sister as well as Mel. As things got more complicated. But, you know, I said it would be interesting to have a, a woman doctor who's not sure who, who you don't know if she doesn't

Alisa Minkin

she doesn't.

Wendy Ross

on the spectrum or she's not disclosing, who it kind of dawns on you gradually over episodes. Like a little bit of this, a little bit of that. Like she's, you see that she stems one day or she's really drawn to like a, a, a methodical task, like a debridement another day, and then another day she kind of doesn't read the room and says something that maybe some, somebody wouldn't have worded the, you know, to a parent the way she did. And then, you know, most importantly, and this happened to a medical student or a student, and now he's a medical student that worked with me. You know, he told me his name is Fox Riker. He's amazing. He's, he used to work in an emergency room before he was a medical student. And he said, you know, when I'm in the emergency room and somebody autistic comes in, dysregulated. I know it intuitively, like I know exactly what to do so they like call from, you know, 'cause so, and you kind of see that happen in the show in like episode six or seven. I think she's such an interesting character and they did such a great job. And I think, I think one of the things that's so special about that show as a whole is that there's an allowance for people to be vulnerable, but, but it doesn't necessarily equate to weak, you know, and in some ways they make vulnerability kind of a strength. It's interesting how they tackle so many issues in one show in 15 hours a season, but like it is really a special, it's a special show, I think.

Alisa Minkin

They're, they're very intentional and, and you've been very intentional about Mel and it's interesting to hear that they asked you for an autistic character and yet she is not diagnosed as autistic. And if you look at the media, the people in the autism world, it's like, if you know you not, and then outside of it, people are like, Hey, there's the neurodivergent character and her sister's autistic. And I think it'll be really interesting over time the way I see it. And I don't wanna be any spoilers for people who haven't seen it, but she's getting stressed on the show. Right? And so, I dunno if you wanna talk a little bit about. What it would be for someone who might not be diagnosed, specifically female, like a character like male. Would that, would her ability to function, like we might call it masking or camouflaging, remain stable, or would that change? This is a very specific question.

Wendy Ross

No, that's okay. I think this is an important topic, this idea of masking and how it adds such a level of cognitive burden to the individual. And I think Mel is interesting 'cause she does mask, but she also doesn't mask at times. And what's special is that people don't. Like sometimes she's a little odd and people don't treat her like she's a little odd, at least for the first season. You know what I mean? So I think, that's also kind of interesting is that she's kind of accepted and at one point Dr. Robbie kind of says you're a, you know, you're a great doctor. You know, he says that to her. So I think that that's really nice to see.

Alisa Minkin

But also representation is everything, right? So if we're talking about making a cultural shift, right? Then we need to move beyond the tropes of say, rain Man or the good doctor, right? The savant. She's not a savant. And back to her not being diagnosed, I still wanna go back to her not being diagnosed because I think that's a very common scenario. She rings very true as someone who is different, she knows she's different, but either she has a diagnosis and she's not telling everyone we don't know that.

Wendy Ross

right.

Alisa Minkin

Or more likely she's missed, honestly,

Wendy Ross

Yeah. Well, I think the thing is also her, her sister is identified, and I think this happens in a lot of families that one person has a more significant form of autism, so the other person doesn't present like that. So they're like, oh, no. You know what I mean?

Alisa Minkin

all the time.

Wendy Ross

so I think that's part of it, but I, I don't think she ever needs a diagnosis because, when you look at sort of the literature by autistic doctors, international, a lot of people are not officially diagnosed. And, and I think, you know, even with a diagnosis, if you know one person, you know one person, right? So it's really about how do we meet people's needs and just be understanding and empathetic and recognize their strengths and that their strengths are worth. Accepting some differences, you know, or even encourage, you know, encouraging some dis different distances because differences, because that might make them sort of think differently. You know, the world has so many, there's so many complicated things, problems to solve, right? It's gonna take all kinds of minds. Like even if you just look at how quickly AI is coming, you know, like there's just a lot of things happening in technology and in science and in other aspects of our world that really do require people to think differently. If we all thought the same, we wouldn't have a lot of advances.

Alisa Minkin

And I'm gonna bring this up. I don't see a stark line in the sand between autistic and not autistic. I see it as a spectrum that blends seamlessly. And there was a book years ago by, I think his name was John Rad, called Shadow Syndromes. And if you're familiar with that,

Wendy Ross

not.

Alisa Minkin

the term broader autistic phenotype, that was used way back also.

Wendy Ross

that definitely. Yes. Yes.

Alisa Minkin

So I, I think that there is a zone, right? And I think a lot of people who are self-identifying might be in that zone. And I'm fine with that. But there are other people who are in that zone who don't wanna identify, right? And I think that if there, if they are in that gray zone, I think it could go either way. And I think that's where some people want the identity and some people don't. I don't know how you think, what you think about that.

Wendy Ross

No, I agree. I mean, I think it's possible to have some autistic features and still not be autistic. I think, you know, Jennifer Cook talks a lot about the human spectrum.

Alisa Minkin

Mm-hmm.

Wendy Ross

I don't know that all self-advocates would agree. I think some people do think there's a, a more stark line in the sand, but I, I think we do see a lot of the blurring around the edges now and. And again, I think it's not necessarily about a label, but it's about understanding yourself and how to optimize accessing the things you want in the world. You know, getting skills where you may not have them intuitively to help support things that come easily to you, right? You know, when kids go to school, parents are, it's common parlance to talk about straight A's as being this goal, right? But in real life, we don't get straight A's, like, I don't know anybody who's good at everything, right? We either do we're good at or we love something else so much that we you know, work really hard at it. And, and other things we just figure out because we need to, or we find someone to help us. But this idea that we're gonna be straight A adults is just not something that exists as it does for children.

Alisa Minkin

Right. It's not realistic at all. And I think understanding your strengths and your weaknesses is so critical, which is what I find it very helpful to get that autism diagnosis for many older teens, especially the females who were missed. I think it can give them an understanding, a framework or the strengths and weaknesses, but I think there is the potential flip side of looking at themselves as disabled as a negative thing. And again, that's because you're talking about the disability lens, right?

Wendy Ross

Right. Yeah. I think sometimes it is nice in terms of getting a better understanding, especially when it comes to social skills, because sometimes people are at high risk for being taken advantage of because they may not re realize they're missing, you know, they might confuse. True intimacy with just sort of romance, right? And, and, and so that's so complicated for girls and women, even under the best of circumstances. But if you don't intuitively understand social rules or know how to read the room, think of how vulnerable you'd be. So sort of understanding about yourself that you might need to get more information, I think is a really important thing and will help decrease overall your anxiety and depression.

Alisa Minkin

I think so too. And I think also we need to talk a minute about the role of a diagnosis for services,

Wendy Ross

Mm-hmm.

Alisa Minkin

right? If you're talking about kids, you're a developmental pediatrician. I'm a pediatrician. The, the specific label can actually lead to very helpful services that you might not be able to get without it.

Wendy Ross

Right. I, I think, yes, absolutely, especially for younger children that need more intensive services then a diagnosis can be helpful. So, so I, it is, you know, complicated, right? You know, some people wanna a diagnosis, some don't wanna diagnosis, some want a diagnosis to get services when they might not really have that diagnosis. So I'm really in my practice, I, I don't give a diagnosis unless I think it fits.

Alisa Minkin

The way I look at it is, it's all in the framing.

Wendy Ross

Mm-hmm.

Alisa Minkin

can both make a diagnosis for services which may have to be disability focused because you're focusing on the disabilities to get help for those disabilities. While at the same time, two things can be true at the same time, you're saying, this is what we're doing to get the services. But you have an amazing neuro neurodivergent, neurodiverse brain, all brains belong, and you've got all these strengths, maybe not superpowers,

Wendy Ross

Mm-hmm.

Alisa Minkin

you have strengths and we're gonna focus on them and do those two things at the same time. I think it's in the framing. I don't think you have to walk away from a diagnosis feeling I'm broken because you're not. Autism does not mean broken.

Wendy Ross

Yeah, it's very nuanced, right? So I

Alisa Minkin

Yes,

Wendy Ross

just sort of understanding all the nuance and then really explicitly talking about it and not assuming that someone's inferring, and I think having role models is a really important cultural thing. So, you know people like Jennifer Cook, people like Mel like, to your point, exactly what you said, social representations of people are really make a huge impact on public perception and a

Alisa Minkin

they, they do. Because we need to understand. Right?

Wendy Ross

mm-hmm.

Alisa Minkin

And watching someone, a character who you love is, is a really, it's a great way and I want you to know she is such a popular character. I don't know if it's my bias because I'm into her and all my Instagram feed, every other thing is something about Mel or, you know, she really, she really is popular and it's wonderful to see someone who is maybe not diagnosed, but. Fits the criteria for milder end of autism spectrum disorder being embraced

Wendy Ross

Mm-hmm.

Alisa Minkin

the whole person she is,

Wendy Ross

Yeah. Mm-hmm.

Alisa Minkin

So that, that's a really amazing accomplishment and I think that you're doing so much amazing, amazing work, both with your physical inclusion projects and your media representation. And I'm really, really excited and honored to have had this conversation. And I wanna thank you so, so much for all your time and patience as we work through this.

Wendy Ross

Well, thank you so much for having me. It was such a great conversation to have. So I, I sometimes forgot we were even doing a podcast. It was just such a nice conversation. So really, thank you so much for having me.

Alisa Minkin

Thank you. And I think we both can't wait to see what happens with me and her sister.

Wendy Ross

yeah. It'll be great.

Alisa Minkin

Wait for season three guys.

Wendy Ross

Yeah. Yeah.

Alisa Minkin

Thank you so much.

Wendy Ross

Thank you.

Thank you for listening to Kids Matter. Raising Healthy, happy Children Takes a village, and I'm grateful you are part of ours. If today's conversation resonated with you, please share this episode with another parent, grandparent, teacher, or anyone who cares about kids. Together we can build a supportive community our children deserve. I'd love to hear from you. Share your thoughts, questions, or suggestions for future topics at Kids Matter podcast@gmail.com. With no explanation for your voice truly matters. Until next time, keep advocating for the children in your life because kids really do matter. They are our future. I'm Dr. Elisa Minkin and this has been Kids Matter. Please note that while I am a pediatrician, I am not your child's ped. This podcast is for informational purposes only and does not constitute medical. For any medical concerns or decisions. Reach out to your child's healthcare professional.