In this MCH Bridges, we talk with AMCHP’s State Public Health Autism Resource Center’s (SPHARC) Autistic Faculty about the Autistic experience in a world that is centered around neurotypical people. You’ll hear from Autistic Faculty members Dave Caudel, Morénike Giwa Onaiwu, and Haley Moss about neurodiversity, ways that Autistic and non-Autistic people are similar and how we are all connected as humans, and what celebrating autistic joy means to them.
Resources:
In this MCH Bridges, we talk with AMCHP’s State Public Health Autism Resource Center’s (SPHARC) Autistic Faculty about the Autistic experience in a world that is centered around neurotypical people. You’ll hear from Autistic Faculty members Dave Caudel, Morénike Giwa Onaiwu, and Haley Moss about neurodiversity, ways that Autistic and non-Autistic people are similar and how we are all connected as humans, and what celebrating autistic joy means to them.
Resources:
Welcome to MCH Bridges, where we lift up innovative ideas and inspiring stories from people in the maternal and child health field. My name is Maura Leahy. I'm a program manager and child and adolescent health at AMCHP and your MCH Bridges host. One of the projects that I have the pleasure of working on at AMCHP is our state public health autism resource Center or for SPHARC for short. SPHARC has always believed that working with autistic people and families of autistic children and adolescents is really important, but it was only during Autism Acceptance Month of 2021 that we, for the first time, really co-designed all the activities we planned with autistic advocates or the parents of autistic children. We thought that we should be doing this authentic co-design all the time, not just during Autism Acceptance Month. So we started the process that ultimately led to the creation of the Autistic Faculty. This episode we're going to talk about the autistic experience, neurodiversity, and celebrating autistic joy. I'll let the three members of the pilot cohort of the Autistic Faculty introduce themselves and tell us a little bit about why they wanted to join the Autistic Faculty.
Morénike Giwa Onaiwu:Hello everyone. My name is Morénike Giwa Onaiwu and I always struggle with introductions because, and I kind of wear a lot of hats predominantly I consider myself to be an author and an advocate as well as an educator about, um, disability justice. In a former life, I was a, a college professor for six years. Um, and prior to that I've taught in K through 12 and worked in a nonprofit sector and done a lot of things in research. I've also had a stint as a stay-at-home mom. All of my children have various disabilities and really I just find myself doing a lot of collaborative work. I have a, a small nonprofit called Advocacy Without Borders, and so I've done a lot of consulting and training with a lot of different universities, nonprofits, and various groups. And I applied for the Autistic Faculty because I really, really loved the idea of being able to pair lived and learned expertise in a role such as this, and especially working with so many different states. And addressing maternal health and just health overall, I really felt that it was a, a, a wonderful and really important role to show a mutual and a extremely innovative collaboration between autistic leaders and um, non-autistic voices.
Dave Caudel:I'm Dave Caudel. I'm the Associate Director of the Frist Center for Autism and Innovation at Vanderbilt University. I'm also a physicist and an autism self-advocate. The reason I applied for the Autistic Faculty is because autism advocacy and neurodivergence advocacy are very, very important to me. I think there's a lot of people suffering largely due to the fact that the public at large is ignorant of the sort of challenges and struggles that they have, and misinterpret struggles as somebody being lazy or somebody not putting forth enough effort, when in reality that person may be trying very hard just trying to do something that's just not natural for. So anything I can say or do that can kind of help people like that in our population be better integrated, I'm happy to do.
Haley Moss:Hi everybody. My name is Haley Moss. I am very proudly autistic. I often say that I'm an attorney by trade and an educator by choice. I spent a little bit of time in law practice, but realize I enjoy making a difference in everyday people's lives, more so than being a part of the justice system that takes its sweet time to do things. I also get to be wearing a lot of hats in my life. I'm also an author. I am a consultant. I do all sorts of different things to hopefully make the world a better place for other autistic and neurodivergent people. And the reason that I wanted to be a part of the Autistic Faculty is I recognize how often folks don't have access to lived experience and autistic adults, and having a voice at the table, especially when it comes to things like public health is really integral and important, and make sure that the work that we're doing supports the needs of autistic people and those who care about and love autistic people without making assumptions about autistic people. I know that sounds like a kind of convoluted way to say that we deserve to be taking up space, not just taking up space, but creating that space and taking that lead to make sure that our voices are not only heard, but encouraged. And creating more space for those voices and ensuring that there really is access for everybody.
Maura Leahy:Before we start talking about autism, we wanted to make sure that we start out with some level setting for listeners who may not be familiar with autism and the autistic experience and what people should know about it. Here's Morénike..
Morénike Giwa Onaiwu:I'm gonna back up a little and, um, I'm going to talk about autism. And I know this may seem, you know, I can almost feel people rolling their eyes like, you know, there's like articles on autism all over the place. I'm not saying that it's something that people aren't familiar with per se. I'm saying that people believe that they're familiar with, but they might not truly be, um, as familiar as they think because sometimes, you know, the colloquial definition of something is not necessarily the most accurate one. What we call autism, it's medical term is autism spectrum disorder. A number of us, myself included, do not think that disorder is an appropriate word for it. It's a developmental disability and neurodevelopmental disability. It's called a spectrum because there's a, a multitude of presentations, essentially, the characteristics that are found commonly among all autistic people, our social communication is different than that of other people. So in terms of the way that we process material, understand and communicate it is not, um, in the manner that the majority of the population does. Our brains prefer to have patterns. We, we like patterns, we like routines. Some of that is because the world around us does not feel very predictable. We have some challenges understanding, um, some pragmatic aspects of the cultures around us, and hidden meanings and inferences and innuendos, um, is very common that in terms of sensory input, it's different for us. We can be either hypo under sensitive to certain sounds, feelings, smells, touch, or uh, we could be extremely sensitive hypersensitive to it. Autism is considered a, a pervasive developmental condition, so that means it impacts all aspects of life and that it is lifelong. It can co-occur with different conditions. Um, it can be found with intellectual disability. It can be found with intellectual giftedness. It can co-occur with anxiety, uh, with seizure disorder, with differences in movement or other differences in cognition, et cetera. It's really broad. And so there is a saying from an autistic person, Dr. Steven Shore, that's used very commonly that if you've met one person with autism, you've met one person with autism, meaning that there's so much heterogeneity in the autistic population that you can have two people who have this same diagnosis, who are extremely different from one, one another.
Maura Leahy:After that helpful level setting on autism and the very different ways that autism can present among autistic people, I asked the autistic faculty about some other important things to communicate that most people likely don't know about autism or the autistic experience. Here's Haley.
Haley Moss:I always feel like what neurotypical people really want to know is what does it feel like to be autistic? And the best way that I can describe this is it is a lot like being a second language learner. That is the best analogy that usually makes sense for neurotypicals is that imagine that you just moved here to the US and maybe you don't speak English. And I say this very example, like even though in autism it's gonna be a different social language. So let's just say your first language is Spanish and you grow up in a completely English speaking world and community, but you speak Spanish primarily with other Spanish speaking folks. So in this case, you're talking your first language with people that are also autistic. And no matter how often you're speaking English, you become very fluent. You're able to go to school in a regular setting, not an ESL classroom in this case, but there's always something, whether it's your accent or the fact that there's certain phrases that just don't make sense to you, that gives away that English is not your first language, and people will judge you very harshly for it. They will ask you why you have that accent or where you're actually from, or they will somehow be like, I can't believe you don't understand. And we don't give that grace. And meanwhile, I know plenty of second language learners in real life, and they do get that grace. People understand that they're trying really hard. But speaking the neurotypical social language is in that very same experience. And typically when we meet someone who's say, learning English for the first time, we give them a lot of grace. And I say this as someone who lives in Miami who has some version of this conversation at least once a week. If somebody will say to me the equivalent of, I'm sorry, my English isn't very good, and every single time I will say something is, I'm sorry that my Spanish isn't better, that I wish I had made more of the effort to learn your language so I can do a better job communicating with you rather than simply expecting you to constantly learn my language. While as autistic people, a lot of people don't learn autistic social skills, they don't learn how we communicate fast. We are constantly expected to be learning that second language no matter how unnatural it feels, no matter how few people or many people even speak your language, sometimes even with the other native autistic social language speakers, we're still speaking neurotypical and fumbling our way through it. So if you've ever watched shows like Love on the Spectrum, you notice how awkward a lot of the dating situations are because you have two people who speak one language, innately speaking a completely different language with each other as well. So in that case of the second language analogy that you have two Spanish speakers both speaking English to each other and it just isn't as ideal as if they were speaking what feels most natural to them. So that is the best way I could describe the autistic experience is you're constantly speaking in other language. People do not give you the same grace, and you are constantly working really hard at it at the point of wishing that someone would take that extra time to learn where you're coming. And sometimes you have to realize, you know what, this is just how it is. And it's, it's tough.
Dave Caudel:I love Haley's analogy. I agree a hundred percent across the board. I, I wasn't formally diagnosed until I was in my thirties. I mean, I've been autistic my whole life and I always knew that I was weird or different or struggled and, and that other people could easily do things that I had to work really hard to poorly imitate even before I, I knew that there was a label to that and I understood that there were other people out there that had that sort of experience. For those of us on the verbal end of the spectrum, those of us who have autism but were able to talk, about 40% of people on the autism spectrum are non-speaking, are minimally speaking. A majority of people on the autism spectrum have some difficulty to one degree or another, being able to verbalize. And sadly, we live in a society that people judge your intelligence based on your ability to talk. But for those of us on the verbal end of the spectrum or myself, I, I consider myself on the hyperverbal end of the spectrum, autism is sometimes referred to as an invisible disability. And the reason it's referred to is that, is that a lot of times when aspects of like a social disability or executive function issues where we are struggling, we're legitimately struggling, we might be trying our best to try and walk and talk and act like a normal person, but there's some aspects of life that we struggle with because people don't understand autism. They see our struggles and they assume that we're being lazy or we're being narcissistic, or we're just not trying or hard enough or that we just don't care enough, uh, when in reality that that's just way off the mark. And if they had any idea at all of why we were acting the way we're acting, or why we're not saying the appropriate thing or why we're not responding in the appropriate way, it's not because we don't care. It's legitimately difficult for us to interpret the signals properly. I think if people understood that, they would be less inclined to be so judgey and a little bit more empathetic towards us. So invisible disability. I wish more people kind of understood the implications of it. I often, when I'm talking to people about how to better incorporate autistic talent in the workplace and stuff like that, I say, look, if we're just a little bit more patient with one another, And put forth more of an effort to try to understand where this other person's coming from and how this person uses language and try to find common ground so we can effectively communicate in both directions. All of the offices and workspaces where I've seen autistic talent fully integrated, everybody is a vibrant part of the team and everybody understands each other and stuff, it always started with that. It always started with people just trying to make more of an effort and not be so quick to jump to conclusions.
Morénike Giwa Onaiwu:That's where I would kind of emphasize the concept of disability justice, which has 10 principles, all of which I won't have time to get into. Some of them are the importance of honoring the other various aspects of our identity and who we are and the wholeness of a person and our inherent value as humans. So people often think about disability in terms of lack or deficit or what cannot be done, as opposed to looking at, um, disability holistically, and the fact that it's part of human nature.
Maura Leahy:Another term that has become more common among the general public is the idea of neurodiversity. It's a positive thing that neurodiversity is getting more attention and everyday use, but as a society, we still have a ways to go in understanding and creating inclusive spaces for neurodivergent people. First, let's take a pause to learn more from the autistic faculty about neurodiversity. We'll start with Dave this time.
Dave Caudel:Neurodiversity, I mean, it was a term that was coined in the nineties to push back against the myth that there's such a thing as a normal brain, that actually no two human brains are exactly alike. There's diversity in thought. There's diversity in perspective and capability. It was just to kind of call attention to it. It was around that time that autistic self-advocates were first starting to really get some traction and getting a voice of their own and kind of speaking out, and they sort of like adopted the term. So just bring attention to the simple fact that there are far too many people in this world that think that my perspective is the only perspective and everyone around me thinks the way I do, sees things the way I do, has the same perspective that I do. And it's where some misunderstandings and some harsh judgments can come across. Cuz if they see someone acting in their own opinion is odd or unusual, they try to say to themselves, well what, what would I be thinking or what would I be going through to be able to act like that? And they can sometimes draw some very wrong conclusions about what someone's motivations or what somebody's intent is.
Haley Moss:Something that I think especially gets lost in this conversation is that it's not just autistic people, and I purposely say this one because a lot of neuro divergent folks get erased from our own conversations, especially people who are multiply marginalized and multiply neuro divergent, and also because we have a tendency to mistake neurodiversity as autism light. And that is far from the truth. So when we talk about who is neurodivergent, but it's pretty much anyone whose brain works outside of this idea of what is considered traditionally normal, whatever the heck that's supposed to mean. So I talk a lot about learning disabilities, mental health disabilities, traumatic brain injuries, and to me that raises a really interesting question of what does neurotypical even mean? Because it turns out that all of us sort of fall short of our cultural norms and expectations in some way, just for some of us it's far more obvious than others. But that's kind of a philosophical question that I don't think there's a very good answer to other than is this all stuff that we made up? Because all words are made up. But that's really what I want people to know about neurodiversity, is that it really encompasses everybody and it's something that's natural and just part of the human experience, not so much just this very othering, separate thing. It doesn't mean that I am a failed version of normal or that something is wrong with me or that I am broken. It literally just means that I am different. It doesn't mean that something is inherently wrong with you.
Morénike Giwa Onaiwu:Neurodiversity is a fact of life. All human beings have different neurological processing. We all have different brains, just like we have different fingerprints, just like we have different DNA. If you look at right handedness as a pretty dominant characteristic in the population, there are still people who are left-handed. There are still people who are ambidextrous even though, um, there are less of them.
Maura Leahy:Earlier in the episode, Morénike talked about common understandings of what autism is and how often these beliefs may not be very accurate. Some of this is tied into how autism or autistic people are portrayed in media via news stories or TV shows. Part of it is also due to the fact that we are socialized from a very young age to behave in certain ways, especially in social situations and beliefs, that anything outside of that imposed norm is bad. We wanted to take apart some of these myths that have become more pervasive about autism or stereotypes about autistic people and how the autistic faculty share from their lived experiences about the actual autistic experience?
Morénike Giwa Onaiwu:One automatically that I'd say is the one that we are kind of unfeeling or uncaring, like they don't like people or don't really care about others. And I would say that that's so off. Like to me it's so wrong that it's almost criminal because in reality, a lot of us feel and think way too much and wish we could turn it off sometimes, but the way we present is the issue. So I think that there's so much that's going on internally that people don't understand. We don't necessarily emote in the same way. I think sometimes people will think that we don't care about others because we don't do small talk. So small talk might be validating for someone. To us, it's just fluff. It's just a waste of time. It isn't that we don't care when we didn't ask you how your day was or said hello. It just doesn't seem relevant. If something bad happens, like someone is hurt or we might not cry right away and that isn't because we don't care. It might be such a shock that it's taking us time to process. Or we might need to logically work through it first before we deal with the emotional aspect. Maybe we cope by trying to, um, find solutions or, or work through things or deal with things in a particular way. Or if someone is sharing something that's happening to us, we might bring up a situation of our own and some people see that as selfishness. We see that as joint troubleshooting, trying to connect. So if you're telling me about your break up, and I start telling you about, you know, a breakup I had. That isn't me being insensitive. That's actually the me trying to connect and relate to you not understanding that you just want to vent. So I'm supposed to just let you talk and not offer comparative solutions or situations and then also our tone. We might laugh when we're nervous or scared and not when things, something is funny. I think that it's about understanding that things have different meanings and the meanings that are often attributed to things, um, in non-autistic society are not what they mean for us.
Dave Caudel:I think it kind of touches on a concept, uh, in research that's called like the double empathy problem. Sometimes autistic folks, we can be seen as not empathetic to people, and part of that issue is because we might be missing some of the message or the signal. You know, human beings have this amazing ability to walk into a room and see somebody in an emotional state, be able to read their non-verbal cues and then mirror that emotional state. They can see the person's upset. That gets them upset. And then there's this empathetic moment of, oh my gosh, what's wrong? You know, what, what, what's bothering you? That sort of thing. And we could walk into a room where something might be obvious to everybody else, but we might not be getting the message because we're not properly interpreting the body language or something. And so everybody's upset that this, this person's upset. And there, there I am looking like I don't have a care in the world, like it doesn't bother me at all. And then people get harsh and judgy because I'm not being empathetic when in reality I'm just kind of missing the message. Well, the same is true in reverse. A lot of times the people within the neuro majority have just as much trouble like understanding and are interpreting our emotional states as we do them. Which is why we call it the double empathy problem. I work with a lot of parents. They have autistic kids and they're often upset because their autistic kids don't seem to enjoy the same sort of things they do. So if you're a social butterfly, when you were growing up and, and you ran around and make big groups of friends and you love being around big crowds and lots of people and doing things together, and for you, that's the end all, be all of human existence. And you have an autistic kid who just wants to sit on a computer all day and game with a couple of people online. And you feel like they're not getting any socializing. I get parents like that all the time who are really upset and worried that their child is not going to be happy and not gonna be fulfilled because the child is not living life the same way that they would. I have to sometimes kind of push back on that a little bit, and I like to use my own son as an example. When my son was living with me before he grew up and started adulting, he very rarely went out and did things in person with other people. But most of his socializing was on a computer game and he's on Zoom or he's on Discord or something, and he's talking. So him and his friends are interacting with each other. They're experiencing the game together. And I had to share with parents, like that's very meaningful to him. He is doing something with other people. He's talking, he's socializing, they're having fun together, they're sharing experiences. That's every bit as valuable to him as it is for you to like meet somebody at a bowling alley or something and hang out and talk. It's the same sort of thing. So try to keep an open mind with your child. Just because it doesn't look exactly like the way that you would prefer to spend your time doesn't necessarily mean that your child is miserable or that they're, they're unfulfilled. Their needs might just be a little bit different than yours.
Haley Moss:Definitely. And one thing I also wanna point out is different sensory stuff. So I am someone who almost never turns the lights on in my bedroom. And I know that is something that when I did live at home or someone else would always insist on turning on the lights and I'm like, this is on purpose. So even understanding that everybody has a very different way of doing things that honors those sensory preferences and some things can feel very magnified. I am very sensitive to light. If there's too much light, it feels very, very overwhelming. And to most people, they don't even notice that while I will. So just understand that someone isn't doing certain things just to be difficult or because it just didn't cross their mind or cuz oftentimes it's assumed, maybe I forgot to put the light on that this is on purpose because it is overwhelming that we're not trying to be difficult or forgetful or anything. It's just sometimes those things are very intentional and folks don't always pick up.
Maura Leahy:I heard a few different themes in Morénike, Dave and Haley's responses, assumptions that the neurotypical way of doing things is the right way and jumping to conclusions or being judgmental about someone's behaviors due to a lack of understanding of how autistic brains work. The biggest theme from me out of these examples though, is that we're all, whether we're a neurotypical or neuro divergent, human,
Haley Moss:there really is a human element to this that I think people forget. Like, Hey, autistic people are people too, and I feel like that's something. Hate repeating cuz it's so obvious. But recognizing the human factor in this conversation is critical.
Dave Caudel:When I'm using myself as an example to try and educate people about autism, I always like to start off with saying first and foremost, I am a human being with all the complexity and nuance that comes with that. Autism is a core part of my identity. It's almost like a filter or a colorthat affects how I perceive the world, how I communicate, how I think about things. But I, I'm more than just my autism, I'm a human being. And autistic traits are really just human traits taken to an extreme.
Morénike Giwa Onaiwu:All people engage in self stimulatory behavior. Tap their fingers or whatever, but we just might need to do a great deal more of it for self-regulation. Or we might do it in a more unusual way. All people have some sense of kind of feeling like a little out of place or you know, not understanding what to say or do in certain circumstances, but it's typically not to where the majority of their life is in group outgroup. Usually those people, there's some community, there's some place within their family, within a certain group or whatever that theyfeel kind of they can breathe, they can let their hair down. Here they're not code switching anymore. Like, whereas for us, that's not necessarily the case because a lot of times within our families, our neuro divergence might also be misunderstood.
Dave Caudel:I like to think of it like this. Look, all human beings have strengths and weaknesses. It's just a part of being human. Those of us on the autism spectrum, we're like a particular flavor of human being. We have many of the same or similar like strengths and weaknesses and stuff, but nobody out there is good at everything. Everybody struggles at some stage or another. I consider as quite fortunate as a species that we have such diversity of thought and diversity of capability amongst our group. Cuz when we come together as a group, everybody doesn't have to be Einstein. You just need an Einstein in a group. And then when Einstein does his or her thing, we're all grateful that we have that capability amongst our group and when that person needs help with something that they have a weakness in or they have a struggle or challenge with, how beautiful is it that there are other people in the group who, where that's their skillset and that's their capabilities and stuff. We rule the planet when we come together and, and, and work as a group because we're able to lend one another our strengths and support one another through our challenges and struggles. And, and that for me is humanity at its best. You know, I have a bit of a social disability and sometimes it's really hard for me to judge how to say something in just the right way or to get the timing, previous experiences of, of saying something at the wrong time or responding in a, in an inappropriate manner and causing the crowd to turn on me or causing people to get upset or offended. And I'm totally clueless as to why they're upset or offended. It has also instilled in me a deep sense of anxiety, and we already have a natural sort of anxiety issue. Now, a lot of times when I'm interacting with the public or I'm interacting with people and it's outside a scripted thing that I'm used to talking about, like autism advocacy, I could talk about that and not get, not get flustered and not get tense. But if you're actually trying to have a connection and trying to say, you know, this is who I am as a human being and I'd like to know more about you, and you're getting to know somebody, there's a lot of anxiety. About saying the wrong thing or something being taken in the wrong way. And sometimes that anxiety can build up so much that the other person can tell that you're uncomfortable and you're awkward and, and they may not necessarily understand why. And that in and of itself, even feeling the anxiety could torpedo this conversation.
Maura Leahy:As a non-autistic person, I wish I could tell you how many different times in my life that I'll be replaying social scenes in my head after they happened, thinking about what I could have or should have said. Similarly, I can't count the number of times I've tried to prepare myself in advance for different social experiences, be it a date conference or group gathering. I try to think about smart or funny things I could say, so other people would have a positive impression of me. It's only now that I'm realizing just how much all of these socialized messages about how we're quote unquote supposed to act or behave are centered only around the neurotypical experience and what this means for autistic and other neurodivergent people. Morénike succinctly summed that feeling up. Morénike Giwa Onaiwu: There's a lot of cuz they're not intrinsic to us, but it feels that the learning often is one-sided that no one is seeking to learn and adapt to the way that we feel or think, but only to teach us to adapt to the way that others do. It feels kind of like a sense of imperialism or colonialism. I'm like, okay, the majority of us feel or think this way, so you need to adapt to us. You need to learn to do these things, but we aren't going to try to have any understanding or appreciation for your natural ways of doing things or even to see if they might be equivalent or even better than the ways that are, that are typical to us. This realization is something I've been thinking about a lot as I've been working on this episode, it's also part of the reason that the theme of our Autism Acceptance Month activities this year is celebrating autistic joy, a theme that the Autistic Faculty came up with. We need to be focusing more on the joyful parts of the autistic experience, not just focusing on the struggles and painful stuff that come with being autistic. Just like we don't always focus on the struggles and painful aspects of being human. I asked Haley, Dave, and Morénike to describe what autistic joy looks like in their. Here's Morénike. Morénike Giwa Onaiwu: I think that people, even a amidst to anyone's difficulties and one's challenges. I can't dictate what joy looks like for someone else, but I know that there are certain things that when I lean into who I am, there's certain things just about looking at the blue of the sky, how pretty it is. I'm losing myself in that or feeling a particular fabric. There's a, a pillowcase that my husband bought for me that is so soft and I just love to just stroke it and to feel it. There are some scents that I have, like, you know, like some candles or what have you, that I just love to smell over and over and over. There's certain songs when I listen to them or watch videos that they can almost move me to tears. Like I could just feel the rhythm, feel the beat, feel the sound like coursing through my body, how much it moves me. Powerful. It is like the concept, the words or, or the melody or the rhythm. Drinking really, really cold water to me, it's just, you know, especially if I'm thirsty, it feels so nice taking a shower, like being in water feels great to me, but hot water, like on my hands, washing my hands with hot water or a shower feeling it coursing down like And the pressure .Or scripting certain scenes of movies, or I can run through things over and over in my head, or the way certain words sound rhyming them around the house. I just find so much joy in these little things in life sometimes that are so meaningful, just like digging into things and learning things, watching a movie and digging into the fan fic info on some site about this character, about that character, about the concepts and how these things fit. Thinking about geography, like you can just get lost in the beautiful, wonderful, cool, intricate little details of so many things. It makes life so meaningful to me.
Dave Caudel:Well, for me, there's a sensory component. My sensory issues are highly variable and sometimes I'm very much sensory, avoiding, and getting overwhelmed. But there's an, there's an upside to that as well. There are some days, When I will bite into a piece of chocolate and I weep for all of humanity because it'll never taste as good to them as it does to me in that moment. Just sheer, absolute bliss. Um, any one of my five senses, I sometimes have moments like that. It's my consolation prize for having sensory issues. And also, like I said before, I, I really love the way my mind works. I mean, on the days when I'm struggling and on the days when I have severe executive function issues or I have meltdowns or something, I'm not so happy in those moments. Sometimes I even hate myself for, for saying, oh, I love, I love being autistic, cuz in that moment I'm kind of suffering. But on my good days, I love the way my brain works. I love geeking out about things I love getting obsessed about. So, Like in terms like research, a brain like mine is a really useful thing to have. You know, I can chip away at a complex, complicated problem for hours, days, weeks, or months, and I don't get bored and I don't get frustrated. Uh, in fact, the complexity and the difficulty actually motivates me and drives me on, and every little bit of discovery or deeper understanding that I get, it's just so rewarding for me. I'm having so much fun that I'm like, I can't believe they pay me to do this. I'm that way because of my brain. And so absolutely, I find tremendous joy. I love, I love my brain. I, I love the fact that I have my own perspective. The grass is always greener and I always have moments when I look at people who can so easily do things that I can't, and yet do I wish I was capable of what they were? Absolutely. But I also, you know, recognize there are perhaps some things that I can do there that I'm capable of, that other people wish that they were capable of. And so I, I try to celebrate my strengths and I try to value my strengths.
Haley Moss:I love what you said there about valuing yourself and your strengths, but I think something that I wanna talk about is that a lot of autistic people will find things that they love and they really, really, truly love them with every fiber of their being. That passion is unbridled in so many ways, and a lot of the times. I see so many autistic people who have these interests and passions and will start talking about them and immediately find a moment to cut themselves off because they have been told at least once in their life that they are too much or that they should be making room for other people to talk and ask questions and everything else. Or maybe that not everybody's interested in that thing and they don't wanna hear it. Every time I have someone who cuts themselves off and apologizes it breaks my heart because so many times autistic people are told that our joy is not the same. That it's not on par that it's too much. I don't want someone to ever feel that it's too much to be yourself. So every time somebody apologizes to me, I tell them, just please keep doing it. Please keep going. Even if I don't understand and I can ask questions when you feel ready for me to ask them is even just getting to celebrate those things that make us happy, whether it's something that people view for little kids, even if you're an adult or something that's kind of off the beaten path, or maybe it's something that's very popular, but you know, too much like a human encyclopedia about that topic. I wish that we understood the value that brings to autistic people in our lives, that it makes us that excited, that joyful. It could lead to careers for the young ones, it could be just something that creates a form of identity and pride in so many other things. So I want us to think about when we think about that joy, stuff like that, and not just everything that's hard for us. There's so much focus on autistic struggle and difference in pain that we don't realize that we are sometimes taking away the very things that give us that sense of purpose or that make us genuinely just happy to be here in the moment. So that's why this means a lot to me. And some examples of what that autistic joy looks like is when you see that light in somebody's eyes when they just start talking. And talking and engaging with that thing that genuinely just makes them excited.
Maura Leahy:It's not surprising to me that celebrating autistic joy also brings us back to our connections as humans and the many ways that autistic and non-autistic people are more alike and different. Yes, there are still a lot of ways that they are different, but at the end of the day, we're all still human. Haley, Dave and Morénike shared a few specific examples about what connects us all as humans.
Haley Moss:And I think some of those things that make us alike is that we all want the same things out of life. And I know that sounds very kind of philosophical, but everybody wants to feel supported. Everybody wants to feel loved. Everybody wants a career that they feel confident in, perhaps, or they want someone that they genuinely care about, or a family or a roof over their head, or stability. I always tell people, if you ask me what my goals, They're probably very in line with most other people who are in their late twenties. And I say that very purposely because a lot of the times people always think that we're that other as autistic people, that when I say, yeah, this is what I'm hoping to accomplish. I would like to eventually have a two bedroom apartment instead of a one bedroom, or that . I want to be able to feel fulfilled in my career. I want to save up for X. I want to fall in love and maybe get married someday. When I say things like that, it's so typical of my peers, whether they're neurodivergent or neurotypical, it sometimes catches people off guard in realizing that we all want access to the same opportunities, whether it's jobs or education or support from peers, from family, from caregivers, from friends that we want so many of the same. That when it comes to things like values, we're very, very similar as human beings, as well as some of those interests. I know that interests for all of us are across the board, but so many things about even what I love and enjoy are very typical of the folks that I've had the pleasure of connecting with. I actually was at an event and I was talking to someone and I told them that I was upset that I didn't get Taylor Swift tour. And I actually remember having this conversation with one of our AMCHP colleagues because we were both trying to get Taylors Swift tour tickets, and it's something that was so human and just so relatable that it was a really great moment of, this is how I know I'm going to be friends with this person, because we both understand this very specific moment in time.
Dave Caudel:Yeah, I, I think there's a lot of, truth to the phrase autistic traits are really human traits sometimes take into an extreme. Uh, you look at virtually every autistic trait. It's not something that's unique to autistic people. The extremity of it may very well be, but you know, like stimming, I mean, who hasn't like tapped their foot or drummed their fingers in a moment when they're, they're a little stressed or anxious or thinking about something. Who hasn't gotten anxious about a situation. These are really just kind of human traits. Now, if you multiply it by a hundred or multiply it by a thousand, and then people go, oh, that's weird, or, or that's too intense, or something like that, but that's just because they're, they're just seeing a, a, a trait at a more extreme than they themselves experience. But the root of it is still the same. Still a, a human experience and I, I wish people would focus a little less on the severity or the extremity of a particular trait or something and thought about it more along the lines of, oh, this is actually kind of something similar to what I go through. It's just a, a much greater degree. It's a moment that we could better empathize with one another.
Morénike Giwa Onaiwu:Ultimately, for all people. You think about blood type, if we think about DNA, if we think about skin color, you know, eye color, all these different. That are so different from group to group, even in one one's own family, you know, really. And yet you can appreciate and understand the differences and celebrate and learn from those things. Similarly, I think people need to understand, okay, so this person may not communicate things in this manner. They might value this thing a great deal more than someone else. I think it's just about accommodating one another. Like for example, if someone is very direct instead of assuming they're rude, cuz if you'd said that or did that, you would be intentionally being rude, maybe assume, try to think, okay, well this person's just very direct, presuming competence of one another, and, and having grace in space, like assuming positive things. So instead of just only looking at things through my lens, Even if we don't really understand, trying to assume that there's a more benevolent reason for things being the way they are than to assume the worst. So if I see someone flaming their hands over their ears, instead of someone saying, oh, they're being dramatic. Here they go overreacting. Maybe something is too loud for them. So maybe it isn't that. Maybe what in the environment could possibly be changed or adjusted so this person can feel more comfortable instead of assuming the problem is the person, what needs to be changed around them. You know, if someone is overwhelmed a lot in, um, big crowds, you know, do they really have to be in the crowd to connect? Like, could you find another way for them to communicate or connect, share their feedback? Can they do so asynchronously? You know, if a person has difficulty going to the grocery store, um, because it's overwhelming, can they make a list and use Instacart? Can we do things differently that work for us, the way that we work? Because there are certain things that to us seem almost simple and no brainer you know, like type of things, but they don't seem like that to our non-autistic peers. But it would be rude for us to assume that they're less than, you know, that's discriminatory cuz they're not less than and just like we're not less than, we're just different. And so I just hope that people can learn, like we've started to do with culture, like we've started to do with religion, we've started to do with age and gender, it isn't better to be younger or older, they're just different phases of life. It isn't better to be this gender or that gender, it isn't better to be um, of this ethnic group than that one. They're just different. And so if we can try to take that approach, and I know it's easier said than done, but it's really something that we need to do, um, to just try. I think having like a universal design, what is something that can work for the most amount of people with the least amount of modification? So a ramp can be helpful for the person that's in a wheelchair. Also helpful for the mom is pushing a stroller, also helpful for the kid that wants to run up and down. So that can be used by the person who needs it as mobility access and the person who doesn't. Whereas the stairs are only beneficial for some people. So if we could kind of design things in a way to where we can all use them, we can all appreciate them. And it's, it's not simple, but I think we really need to try and I think that we have the capacity to get better. We just need to learn that these things are important. That they really are, that these things that look so small, you know, or may seem to be so small, could be so, so, so, Huge for someone else. One example I wanna give captioning. Initially it was something that people were utilizing as, you know, an access tool for people who are hearing impaired or deaf. But it benefits so many people. If someone's a, um, a visual learner, if someone English is their, not their first language. If someone is gonna need to translate this later or has delayed processing, I, I captions are such a, a godsend even if they weren't something that was created for me. So, like the curb cut effect that we see in so many things, um, cuz ultimately a lot of the things about accessibility and changing our world, they're beneficial for non-autistic people too. Um, when I taught in the classroom, I had a sensory area and then I had like different tools. A lot of the times it was my non-autistic students who used those things a lot more just, you know, stress balls or like the beanbag chairs or whatever. Like they found those things were beneficial for them too. And it's not necessarily just, you know, about neurology, it's really just about access and inclusion for all.
Maura Leahy:We like to end all of our MCH bridges episodes with a call to action. So I ask the autistic faculty to share a call to action for our listeners.
Morénike Giwa Onaiwu:We can all stand to grow and to learn. I think that we live in a classroom of life. And that we all bring something to the table. Um, so the concept of, you know, engaged pedagogy talks about a learning community to where the, the, um, facilitator or teacher and the students all bring something together. It's not, uh, just about acquiring information or knowledge's about being a better person, like a better human, holistically, like being your best self. I think we should, we can all challenge ourselves to learn more, learn from different sources of information. You know, are you around a lot of professionals? Could you go and hear the voices of youth? Are you in the global north? Maybe there's a lot you could learn from your colleagues in the global south. Like who can we learn from? What can we we do to better ourselves and to expand our knowledge? Because we all have privilege and, and we all have marginalizations, but in our areas of privilege, whatever our sphere of influence, maybe we can bring forth the perspectives, the ideas, the thoughts, the needs of people who might not be able to be at that table in that room. One thing that I've been trying to do a lot now is really, really kind of yield to the, you know, the expertise of a lot of my, um, autistic colleagues who are non-speaking or minimally speaking, um, you know, full-time, um, augmentative assistive communication users. Um, for me it's something I use part-time, but I am typically, you know, more than probably 60% of the time I'm able to speak with my mouth. Um, where, and so there's so many concepts that I have learned and gained and been able to share with others from, um, people whose experiences are different than mine who don't have the privilege that I have. Privilege is not a four letter word. It's not a bad word. It's a word. It's something that we all have, we all have privileges, we all have marginalizations yet, especially when they're intersecting areas of marginalization can make life challenging. A lot of us can lean on our, on our resilience and our strength to try to fight for equity, but in the areas where we have privilege, um, use those. That's superpower. Use those to help um, those who don't have that privilege, use those to grow and to change to open doors. It's there. You didn't ask for it, but it's there. So instead of denying it, being there, being guilty that's there, or wishing it away, use it for the greater good and help others. And in doing so, you're gonna really help yourself as well if you're gonna grow so much, As a person. And so it doesn't matter how long you've been in this field, how many people you know, or how long you've been aware of your neurology, how many thousands of people you've worked with, you can still stand to learn something from someone. Um, don't ever be, you know, um, too good or too, uh, too knowledgeable to, um, continue to.
Dave Caudel:I offer advice that I think doesn't just apply to autistic people, but you know, about a third of the US population is in some way, shape or form neuro divergent. That's, that's a lot. 30 something percent. That means that you interact with neuro divergent people all the time, whether you realize it or not. And the best piece of advice I could give is that like, look, the next time someone walks or talks, or X in any way, shape or form, in a way different than what you expect, and you have that instant knee-jerk reaction of a negative emotional response to that, that's the lizard part of your brain reacting, which works really good in like life or death situations and stuff. But we have all this squishy stuff wrapped around that lizard brain that allows us to have higher thinking and higher reasoning. It would be really helpful if you didn't just immediately responded to whatever emotional impulse you had, but just stopped and thought a moment and said, you know, Hey. Are my emotions really being fair to this person? Perhaps this person has a different perspective. Perhaps this person uses language differently. You know, I think if we just gave one another, a little bit more patience, a little bit more grace, and tried to discover what someone means rather than just assume what somebody means and responded appropriately. That would solve a lot of problems that exist today, or at least it would minimize a lot of problems that exist today. And just be kind to each other. Just be a little bit more patient and forgiving and understanding. Give people some room. Don't be so quick to judge and don't be so quick to jump to conclusions. If you start living your life like that, you're gonna have a huge impact on the neuro divergent individuals that you encounter, and you're gonna be able to form a lot of friendships that you might not have otherwise realized were capable of being.
Haley Moss:I think you hit the nail on the head and just something that I always like to tell people as a call to action is keep learning and stay curious that it's okay to feel like you don't know the answer or what to say. So something I always tell people is just ask how they can be more supportive, like it's okay to ask questions. I know that some people have very different boundaries on questions, myself included, but it can't hurt to ask and somebody can also advocate for themselves and say, Hey, I don't feel comfortable answering that, and that's okay too. Everything in life is a teachable and learnable moment, and I hope that we take that opportunity, especially when we are interacting with neurodivergent people who we love and care for. I wish some of my friends asked me more questions, instead of just getting frustrated over certain things. So I have a friend who will immediately just reduce a lot of my very autistic related struggles. So I know Dave said it's a, it's socially disabling sometimes, but sometimes it's genuinely disabling, not just socially. That I wish that instead of just being like, oh, it's because you have anxiety or something when it's really an autism thing that I wish this friend of mine might take more time to ask some questions that get that wire, oh, is this an autism thing? What should I know? I'm not saying I want to always educate on every aspect of my life, but it would be extremely helpful if someone just asks those questions once in a while. So I know a lot of us will either ask too many questions, but I also am worried about the folks who ask too little because you end up making a lot of assumptions that just end up hurting our connection together. Not just one of us, but both of us. So I always like to look at this. It's a give and take and don't be afraid to ask questions. How you can be more supportive and keep learning, and hopefully you learn from folks who aren't just those of us who were here on the podcast today.
Maura Leahy:Even though I've had the pleasure of getting to work with Dave, Haley, and Morénike for almost a year, I feel like I am constantly learning from them in almost every interaction we have. Getting to talk with them for this podcast episode was no, except. I never realized just how one-sided some of these socialized messages are that we get from such a young age about the right or normal way to behave, and how much of the autistic and neuro divergent population is getting left out. One thing I found interesting was just how many aspects of the autistic and neuro diversion experience resonate with me as a non-autistic person. We've all been in positions where we worry about saying or doing the right thing or made a judgment about a person based on how they acted without really knowing why they may be acting that way. This episode reinforced for me that we all need to give each other more grace, celebrate our differences, as well as what connects us as humans. There is no quick fix, but if we all took even small steps to be more inclusive of autistic and other neurodivergent people in our personal and professional lives, There is real potential for a ripple effect to make positive changes for inclusion and create some lasting systems and societal change. Thank you for joining us on this M C H Bridges. You can find the transcript of this episode at www.mchbridges.org. The show notes for this episode include more information about the autistic faculty, as well as other recommended resources. To learn more about autism, be sure to follow AMCHP on social media. We're on Twitter and Instagram at DC_AMCHP. We hope this episode created some new connections for you. Stay well, and I hope our paths cross on the next M C H Bridges. This project is supported by the Health Resources and Services Administration or HRSA of the US Department of Health and Human Service. For H H S as part of an award totaling $1,963,039 with 0% financed with non-governmental sources. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS, or the US government.