[00:00] Valerie Beck: Rise, renew, reconnect. Welcome to from the Ashes, a podcast where every story ignites hope and healing.
[00:21] Valerie Beck: All right, everyone. Welcome back to from the Ashes. I am your host, Valerie Hwang Beck, and today I have a wonderful guest with me. Her name is Dr. LouAnne Boyd, and she is an assistant professor in computer science at Chapman University.
[00:36] Her research interests center on the design, development, and evaluation of novel technologies to support neurodiverse populations. Her current projects investigate new interactions across two design frameworks she created. And the first is based on neuroscience theories to accommodate sensory impairments by designing technologies to increase accessibility of information and social connection for people with autism, adhd, social anxiety, or dyslexia.
[01:01] Mouthful, but we're going to so get into that. The second is using technology design principles to extend beyond awareness of neurodiversity to celebrating neurodiversity.
[01:13] You ready for this?
[01:14] Dr. LouAnne Boyd: I'm ready. That is a mouthful. Let's break it down.
[01:17] Valerie Beck: All right. Welcome, Dr. LouAnne Boyd.
[01:20] Dr. LouAnne Boyd: Yay. Thank you so much, Val, for having me on here. I'm really excited to dig into this story.
[01:27] Valerie Beck: Yes. When I saw you speak at Speakers Institute the other week, I knew that I had to have you on. Your anecdotes and your experience really spoke to me. And I've been learning my own journey of how to find compassion for my more diverse audience, more diverse population in the world.
[01:47] And the more I learn about, you know, just people, the more I realize we are living in very, very different lived experiences. So, yeah, let's start off with that.
[01:58] Dr. LouAnne Boyd: Sure. So, as you mentioned, I was a therapist before a computer science professor. So those are two different sides of your brain. So let's talk about how I hopped from one to the other.
[02:08] I was interested in psychology from a young age. My sister has disabilities, so I grew up kind of as the big sister, protecting her and just being very compassionate and very sensitive to how people talked about people with disabilities.
[02:20] And so I majored in psychology and undergrad and went on to get a master's in counseling and worked at Hopkins at their behavior unit with kids with kids and adults with developmental disabilities.
[02:31] And so I love this work. It's the kind of work where you either love or hate your job day one, because it takes a lot of heart work. It's a very emotional work, and it's.
[02:40] It's not for everybody, but I absolutely loved it. And so I spent many years there working inpatient and then outpatient.
[02:47] And then I had some things happen in my life, particularly a fire that burned my apartment to the ground. And so I took a moment back and said, where do I want to go next?
[02:57] And I felt like the universe was saying, you have no baggage. Literally, you have no bag, no bags, so go everywhere you want. So I moved from the east coast, where Hopkins is in Baltimore, to the west coast here in California.
[03:10] And I picked up doing the same kind of work I had been doing as an autism therapist. At this point, I was working in schools. I had worked in homes with children under three families that were recently diagnosed, kind of helping them navigate the space of dealing with a child that may not develop the way you expect or anticipated, and kind of how to get through that and not only survive it, but kind of how to thrive with this new adventure that you're on.
[03:35] And I did that work for about a decade. And then the coolest thing happened. I met a professor from University of California, Irvine, Dr. Jillian Hayes, and she was looking for classrooms where she could deploy technologies that she was building for kids with autism.
[03:50] So I was like, oh, my gosh, Autism technology. What is this? This is a whole new space. And so she.
[03:58] We started working on projects together. She would have PhD students, and they'd make a new project for their PhD, and they'd need places to deploy it, to test it out, to use it with actual users.
[04:06] And so I became somebody she would consult with to talk about, like, what designs might work here, or what do you think from your perspective as a clinical person. And so I fell in love with that work.
[04:16] And one day, I found myself not feeling like I was growing anymore at my job. Kind of a couple things came crashing down at the same time for me.
[04:25] One was that I was kind of frustrated that I had been there a decade and I still wanted to grow and bring new technologies, our new therapies, kind of to the school districts.
[04:34] And I don't know if you've noticed, I talk a little fast, but I kind of work at this pace, too. People just didn't want to keep changing and growing at that rate.
[04:42] There was kind of like, you've given us enough. Let us digest what you've given us. And I was like, no, we can't stop now. There's so much to do. So kind of hitting the.
[04:50] You know, I was kind of sealing, topping out at that job, and then I was really excited about this new technology because technology, obviously, is a way to amplify Anything we do as humans, it does it quicker, faster, more efficiently, and hopefully better.
[05:04] So I was kind of really curious and being pulled in that direction. And I also got diagnosed with rheumatoid arthritis at the same time. So my body kind of just came crashing down on me.
[05:14] And so it was kind of a. That was kind of one of my rock bottom kind of flaming out. Kind of like I need to be doing something different, clearly, in many different ways.
[05:25] My body's telling me to, like, start over. And so that was the time where I kind of made the leap and quit my job, despite my husband's feelings about it, who now is an ex husband.
[05:38] I knew it was. I knew it was a path I meant, was meant to go down. So I started a PhD late in life in computer science, which is very different from psychology.
[05:48] But the area of computer science that I study, human computer interaction, actually overlaps with psychology quite a bit. So I can bring kind of this 23 year career kind of into the space.
[06:00] And the woman I was working with who became my advisor, Gillian, she also did her dissertation on tech for autism. So she was very interested in my expertise because generally when you're a computer scientist, you have to go out and find an expert or someone with a lived experience and kind of like interview them and learn from them what to put into your design.
[06:19] But I was like my own expert. I could be like, I could learn the technology piece but bring my own expertise and we wouldn't have to kind of outsource that.
[06:26] I could kind of serve that role. So that was super cool. So a lot. I had recently, right before that, written a book about social skills for kids with autism.
[06:35] Okay. And my dissertation was going to be like, let's build these things that I actually just made mental models out of.
[06:41] That's how I made the initial leap.
[06:43] Valerie Beck: Amazing. So I have so many questions for you, but I think the first one that I want to start with is centered more around the heart space of all of this.
[06:52] Because you have done so much work in this area and I can tell, and I have heard bits and pieces of your story before. I would love to dig into one of those.
[07:02] If you could tell the audience something that motivated you from that heart space, something that you witness as a autism therapist that really has driven the work that you do today.
[07:14] Dr. LouAnne Boyd: Yeah. So one of the things I think, why, you know, like, why autism? And I think I talked about having that sister and being compassionate that way. But what I was finding in classrooms and I was still in the therapist space Were a lot of these kids that had Asperger's syndrome, what it was called in that day, were really excluded and bullied by their peers.
[07:35] And nobody had an understanding because they weren't presented like, they weren't presenting like a severely disabled person. Yet society definitely was not reading their cues the way they were experiencing the world.
[07:45] And there's kind of this gap and I could see through the gap, I could see where they were coming from and, and be like, wow, it's really not fair that people aren't understanding you.
[07:53] But at the same time, you know, we've got to kind of meet in the middle some way. And so, you know, I had so many experiences where kids were getting bullied or even getting expelled for behaviors that were just kind of self defense and it breaking my heart and you know, it just, it kills me.
[08:11] I don't, I don't quite know why it touches me so much, but I think it's just that the big sister in me.
[08:17] Valerie Beck: Yeah, you know, one of the things that really struck me in when you talked was you, you, you talked about the suicide rate. And I want you to just tell the audience a little bit about that.
[08:30] And along with that, I have the question of like, you know, I don't know if autism is over or underdiagnosed because I feel like there's a stigma around it and people aren't, they don't want the diagnosis.
[08:43] And that can really work against being us being able to help people. So can you just talk about some of that as well?
[08:50] Dr. LouAnne Boyd: Yeah, absolutely. So like I said, people don't see that people are autistic necessarily. They don't read them that way. They just read them. As. I used to actually do a training called.
[08:59] Is it Asperger's or just ***? Is he just an ***?
[09:03] Because a lot of these high school teachers are like, this kid is just a punk. He's like talking back and I'm like, actually, if you look at his file, he has Asperger's and the rates are way higher than we imagine.
[09:14] This is a normal part of diversity. It's something that's just been.
[09:18] We didn't start diagnosing it a couple decades ago, but it's always been part of our existence. And there's a great book called Neurotribes where they talk about in the caves, when we were cavemen, people were autistic.
[09:30] This is part of this, the normal diversity of human expression. And. But yet we make it to be such a weird experience for people. And so the thing I think that gets me is because people aren't identified as being or even if they have a label, you know, that, that others them that makes them less than that.
[09:47] We've got this stigma around being different in a way that doesn't need to be there. It's it. It leads to really, really high suicide rates. So one of the rates, I quote a lot in my research is that kids, people are 28 times more likely to commit suicide with autism as a teen than anybody else.
[10:04] That's staggering. 28 times more likely.
[10:07] And actually people with autism are often more successful at committing suicide, not just attempts at suicide. So it's really kind of this desperate loneliness outsider experience. And there's just the human in me just connects with that like that does not need to be.
[10:21] This is completely a misunderstanding. So knowing that these rates are just staggering that and they don't need to be there and it's, it's really about our own acceptance. It's about belonging.
[10:32] And these folks spend a lifetime trying to fit in and that's just the wrong agenda that there should be this way to be and that's the only way to be.
[10:41] And anyway, so I've decided this is my life's purpose is to change that and to change that messaging and starting with awareness. Like people just being even aware that that might be what's going on with your peer.
[10:52] Maybe he isn't an ***. Maybe he has *** prickers or maybe he's both. I'm not excusing all, all behavior but I just think there's a lot of miscommunication and it's not helping us as, as a society to not address it.
[11:05] Valerie Beck: Yeah. So I'm going to tell a little bit of story that I actually told you a little bit of already that is going to show, you know, I, I have a lot of ignorance in this area.
[11:14] It's not like I've spent a lot of time and I've, I'm recently just really starting to realize like how prevalent autism is and, and that it really does. It's everywhere.
[11:24] It affects all of us. And so I was in Japan recently and one of my guests who identifies as on the spectrum and this is when she actually told me is that she observed that like a lot of.
[11:36] Because we were on a trip for anime fans and she was saying how like almost one to one. I don't know if this is like accurate. Right. But almost one to one correlation between those on the spectrum and those who are anime fans.
[11:48] And I, you know, a light bulb went off in my head in that moment because it just, it changed the, the way that I saw everything.
[11:59] And not in a way of like, ooh, all of a sudden I'm around people that are not like me, but it's like, oh, all of a sudden I'm around, you know, like I.
[12:08] There are people around me who may be dealing with difficulties that I can't see.
[12:12] Dr. LouAnne Boyd: Yeah, yeah.
[12:13] Valerie Beck: And it reminds me, and always I have to remind myself that people are living with their own struggle and with autism.
[12:23] This is my opinion. But I feel like it can be very difficult because social norms are so strong and when we can't follow them, society's particularly harsh.
[12:39] Dr. LouAnne Boyd: Yes, yes. And particularly in Japan.
[12:43] Yeah. As a communal society. That's really, like, really, really important there. I only bring it up because I think I mentioned when we met that I recently did a symposium in Japan called Celebrating Neurodiversity.
[12:56] And the idea there was to bring some awareness about the autistic experience there because the stigma is even higher. And so the rates I talk about here about suicide are even worse there.
[13:09] And there's a lot less services there because it's not. They're just getting started. And so, and not that people don't have access, but generally there isn't a system to kind of support people and, and, and so understanding, like, why are we this way?
[13:23] Why are we having to like, exclude people just because they think differently? Like, actually thinking differently is wonderful and it will actually secure our survival. So why are we shunning these people?
[13:32] And I think historically it comes from a place of just like, oh, that's different for me. Therefore it must be bad. And kind of looking back and thinking of autism the same way we think about other identities that are different than ours.
[13:44] I mean, we've got, you know, a long history of racism, we have a long history of sexism. And now we have this history, the awareness of ableism, like just being different from other people is, is okay.
[13:56] And you know, even using the word normal, like that's, that is a made up idea. Right. Nothing is normal. It's just average. And when did average ever become great?
[14:05] Valerie Beck: Like above?
[14:07] Dr. LouAnne Boyd: Like, why is that so good? So, yeah, I think there's just so much work to do on so many levels.
[14:12] I'm so excited to get the word out about how to make it take off so that we can change these perceptions.
[14:20] Valerie Beck: Yeah. So tell me a little bit about how your approach has.
[14:24] Well, one, how did you start off Right. As an autism therapist without the technology part in it yet? And Then how did that evolve once you started integrating the technology?
[14:34] Dr. LouAnne Boyd: So as an autism therapist I was trained, I was a behavior therapist. So there is learning science behind that. So it's very much back to B.F. skinner. Like here's how we learn.
[14:44] Learning science says, you know, we, things happen in our environment, we make a record of it. We change our behavior based on the consequences we've got. So I, you know, I used a lot of those therapies and that's how we all learn so they, they can be successful to a degree.
[14:59] But what I realized really early on, especially working with under three year olds, is that autism isn't a learning thing. And that's like, wait a minute, what? It's not a behavior disorder, it's actually a sensory disorder.
[15:13] It starts with the input of information. So here we're like asking people to behave a certain way and follow social norms and all this higher processing stuff when the input is different or the sensitivity to that input is different.
[15:26] And that's a game changer. So early on as a behavior therapist I co treated with occupational therapists and speech language pathologists who already got this. It was really the behaviorists, I think that are late to the, late to the party in terms of understanding.
[15:39] Like if you can help somebody regulate and be in their body and be calm, you're going to get a lot more success. I mean that is basic wellness, right? Yeah, that is not the approach in some of these therapies.
[15:52] And so, or at least it wasn't you know, 20 years ago when I was a therapist, but or beginning therapist anyway. So then tech, you bring technology into it and this is where it gets scary.
[16:03] I was attracted to technology because the promise of making things better like exponentially. Oh, you can't afford therapy. Maybe we can do something digitally like the access to support. But also we're the chances that we're going to amplify the harms of it if we're still assuming you're supposed to behave a certain way.
[16:19] And now we have, you don't even have a human there with a heart that can mediate and use their self to kind of read when you're not quite ready. And kind of, you know, all the things I did as a human and on the potential of this to take off and to replace humans got really, really scary.
[16:35] And so that's kind of where I started to double down and make sure, you know, I wrote a second book that's about making designers of technology aware of these sensory issues in autism and other neurodivergences to make sure that they start at that place that you're like, check the input before you're having these expectations of output.
[16:54] Because we walk around saying, oh, that person acts odd. Acts odd. We're like at this behavioral level, we judge people at that behavioral level, but we don't, we don't know what's going into the system or how it's being, you know, processed.
[17:05] And it's very similar to trauma, the work you would do, like you don't know what somebody's been through. It's very parallel to that. You could use that analogy. And I'm not even sure they're different, honestly.
[17:15] Yeah, yeah.
[17:17] Valerie Beck: Well, I think, you know, based on just my own observation of things, there is sometimes where the sensory out input. Sorry gets to be too much in the moment. You can already tell when someone starts to panic.
[17:29] You know, whether that be an, like in an autistic person or if it's someone dealing with trauma. Like I do find that the, the reactions can be very similar.
[17:38] And I think as, you know, as you, as the therapist, like you have experience of how to deal with that, right?
[17:45] Dr. LouAnne Boyd: Yeah.
[17:45] Valerie Beck: How can you explain that so that we as laypeople can start to just be able to help those in that, that situation, maybe diffuse it in the moment?
[17:59] Dr. LouAnne Boyd: Yeah. Wow, that's a really good question. So I think it's again, it's so the same as any wellness thing. It's like being aware of our own ego. So a lot of things that tip people off before someone might even have a meltdown.
[18:14] That's one situation. If they're just in a sensory overwhelm situation on their own, like the environment's too loud or the lights are flickering or there's something sensorily going on. People are already doing things to manage that.
[18:25] But what I find the most interesting is when they're interacting with people and the people are making it worse, somebody says something and they're trying to regulate their own comfort or even maybe their own understanding, they're asking for additional information.
[18:38] And the way they ask is unexpected and it sets off the person. Like I don't like your tone or you know, that was rude the way you said that. Or why are you rocking like that?
[18:48] Is that looks odd. Like we, we're reading it from our own perspective and we're judging it and we're, you know, and it's really just a reflection of where we are as a person.
[18:57] Like do I feel solid enough in me that I can, that person can be them and it doesn't matter if I'm having a conversation in public and this person is rocking because that's what they need to do to regulate.
[19:06] It's not a reflection of me. So so much of it is, like, about just checking our own ego.
[19:11] That's a hard message to tell people. Like, they're like, hey, I want to get better at this. And you're like, hey, check your ego.
[19:16] It's like, it's really, really tricky, and I haven't quite figured out how to deliver it without just using humor. Really? Like, have you ever found yourself being, you know, are you the jerk in the room?
[19:26] Basically, like, so that's kind of. I find, like, people are afraid to enter environments because they don't. They can't predict how another human is going to react to them. And then I think checking in with people to see if they're doing all right, you know, like, something might be overwhelming.
[19:42] I mean, like you said, you can usually read somebody's body language and be like, wow, this is. This must be overwhelming for you. But, you know, inviting people to kind of move through life at their pace and just check and being.
[19:52] And being okay with that and not having your. Our own expectations. I find, like, the worst situations are our expectations of other people.
[19:59] Valerie Beck: Yeah, yeah. And I think checking in with that with yourself, because, like, you know, even growing up, I remember just my mom would sometimes say, like, why are you reacting in that way?
[20:09] And it feels super disempowering when someone questions your own reaction to things because, like, you don't necessarily have a. It's not like you're trying to be difficult. Right.
[20:22] And so, like, I think we've all experienced that to some extent, of someone else being like, well, why are you doing it this way? Yes. Yes.
[20:30] Dr. LouAnne Boyd: Yeah. And how we shut down that judgment just shuts us down. And then it's just a nightmare. That's just a crumble from there. So I feel like when you get hit with that, when you have that instinct to be like, why are you acting that way?
[20:40] Like that. That thing that kind of ticks you off. Like, to me, that's a trigger if, like, some other human is making you feel that uncomfortable. Whoa, wait, wait, stop.
[20:48] You know, that is obviously our own trigger. But then maybe stopping to think, maybe something's going on with them, maybe they're wired a little bit differently. I used this example just with my friend on a hike this morning.
[21:00] We were talking about somebody at her work that said something really rude to her, and she was like, you know, after, like, the fourth or fifth thing you said. It actually started to cross my mind, maybe he's on the spectrum.
[21:09] And I said, you know, what if we thought about it like say you were doing surgery with somebody and they're hand handing you implements to do the thing and you're not quite looking at them and they're handy and they keep putting them, handing them to the wrong hand and you're like, why are you doing that?
[21:21] Why are you being so annoying? I, I'm left handed and it's like just being able to say you, you're wired a little differently. Like I function better with my left hand than my right hand.
[21:29] Why are you giving me this thing? Like just that little shift, like it's not, it's not a big deal to be left handed anymore. Right.
[21:37] When I was little they didn't make the scissors, but now they make the scissors and all the things. And so I think it's that shift of like, wait, why am I getting annoyed?
[21:43] If somebody, if we can just recognize this is just, we're just talking two different little languages, we can quickly kind of accommodate and regulate with each other and then it doesn't have to be a thing at all.
[21:54] It's like a simple shift. Totally.
[21:56] Valerie Beck: And it takes a while, I think, for, for us as humans to catch up right over history of like adapting to the people who are different. Because I think in the past what we did was we forced the left handed people to just be right handed.
[22:08] Dr. LouAnne Boyd: Exactly, exactly. Right, yeah. You have to write left handed. Everything's the, the margin on the paper. Everything is built for the right handed world. And I think that's a great analogy.
[22:17] Everything's built for the neurotypical world.
[22:19] Yeah.
[22:21] Valerie Beck: So I actually, I studied psychological services when I was in college. This was way back when. And I never went on to become a therapist. So I, I, I don't have the up to date but I do particularly remember when I was in school the language of neurotypical and neurodivergent did not exist.
[22:38] And that wasn't that long ago. I was in college probably no less than 15 years ago. And yeah, and since then it has, neurodivergence has become more of a wider, you know, consciousness.
[22:53] But I still, because like, especially for me, I still know like it took me a while to catch up to that language. And so just even the concept of a spectrum, right.
[23:02] And the, the awareness that autism, adhd, social anxiety, dyslexia, they're, they are somewhat related. So for, I think for a lot of us, if you can Dip into that. Just explain to us what the spectrum is.
[23:14] Why is autism, adhd, social anxiety and dyslexia all considered on that spectrum?
[23:20] Dr. LouAnne Boyd: Wow, that is a million dollar question. Great question. So, yeah, we had this thing called the neurodiversity movement happen in the 90s. And so I parallel this because I've been around for many DSM books.
[23:31] The Diagnostic Statistical Manual, like I started with the third edition. That's I'm an old lady. And now we're like in the fifth edition. Back then, you know, it was just autism spectrum.
[23:41] It wasn't a. It wasn't a. Actually, it was just autistic disorder. So we didn't have a spectrum yet. Realizing it wasn't always this severe end. Or kids that had multiple handicaps or disabilities, impairments, speech issues, maybe motor issues, like a whole host of things going on that anybody would recognize this person as having a disability.
[24:01] There was that, but at the same time there was also, my first DSM also being gay was in there as a disorder.
[24:08] It was like. And so at that time, at the gay rights movement started and they were like, people were like, this is not a disorder, this is just a difference.
[24:16] Sort of the neurodiversity movement rode on the back of that. And it's kind of been behind that all along. It hasn't really gotten to the foreground yet. But the idea of like, yes, disability is actually normal.
[24:28] It is actually part of diversity. It's actually part of the experience. It doesn't have to be less than, it doesn't have to be other. It doesn't have to be strange or weird or all the things we see say about folks that have different sexual preferences or people that are different colors.
[24:40] Like all the diversity that we have, this is just another form of that diversity. So why all those different disorders? I think disorders, we've got this idea that there's this normal average in the middle kind of thing.
[24:52] And these are wirings that are just fall outside of those norms. And so norms are just also made up numbers. Like, it's just. It falls outside of the 50%.
[25:00] Or if you want to do two standard deviations. It's just that these ways of wiring are different enough so you could almost consider anything nerd neurodivergent if it's not the typical way of doing something.
[25:12] So say we measure reflexes and it takes, you know, however many milliseconds to do some reflex and somebody does it slower or faster. The reflex comes from a neuron. Everything comes from a neuron that we do.
[25:25] So kind of anything you don't do in an average way can be considered divergent. And where that gets criticized or stigmatized is when it hits the social behavior or the cognitive level, like way up high, where we're not following norms.
[25:40] Again, like the average way people are supposed to respond or the expected way that made us all feel safe because we could count on people being on our side if they acted the way we expected them.
[25:49] They're not starting trouble if they're not like confronting us and these kind of made up societal rules that we've used for centuries to keep us to feeling safe. And so yeah, I think that's how they get lumped there.
[26:01] And I think as the move moves, more people are like, yeah, that's me too. Bipolar people are like, yeah, we're divergent neurologically. It's, you know, these are synaptic, hormonal, neurotransmitter related things.
[26:12] I think they kind of draw the line when it's clearly just a sensory motor issue that doesn't really impact kind of behavior and, and cognition as much, but it's sort of arbitrary.
[26:22] It's kind of just this idea of like there is a whole, all of this is normal. All of this is part of this expression. And so that's why you see it all lumped.
[26:28] Now we are generally talking about autism when we do that. But to me it's kind of the big three, I would say are like autism, ADHD and dyslexia. Kind of are like the first three people in line that are like, hey, yes, we are wired differently.
[26:40] Valerie Beck: Yes, absolutely.
[26:42] So I have a tricky question to follow up with that because I think in traditional Western therapy we view disorders as disorders because basically they make us less functional in wider society.
[26:56] That's why it's called a so called disorder.
[26:59] And so the whole idea behind therapy is to fix yourself enough in order for you to be functional.
[27:05] Right.
[27:07] Which there are some problems with that framework, I think. And the, and right now I think what you've been advocating for is more of approach of how can we change society and our ability to integrate different people who are wired differently.
[27:25] Dr. LouAnne Boyd: Right? Yeah, yeah.
[27:27] Valerie Beck: Which is a big challenge.
[27:29] Dr. LouAnne Boyd: It's a big challenge. So like the autism, I think even made it to the books.
[27:35] You know, we made this DSM manual to decide what is normal and not normal to enlist people into the military. We needed to know that they were going to be stable.
[27:43] So we have to come up with this idea of labels, like are they going to be stable when they're out there at war. So how do we know? So psychologists were tasked with, we got to like come up with these disorders so that, you know, like there was a specific function for having these labels to begin with, at least for the dsm.
[27:58] So you're right. When we do therapies to make people functional, to make them kind of be able to just do the things to get through daily life, there's a good part of that in the sense if there's a therapy that can help someone say their tendon is too tight and if we stretch it, they can put their foot all the way down and they're not in pain anymore.
[28:14] Beautiful. Awesome. Yes. We can rehabilitate or habilitate some of these conditions, but if we're changing people's behavior so that they socially fit in, then that's the place where I found the rub.
[28:26] And that's where it hit my work specifically where, you know, the idea that, you know, using a certain tone of voice is, you know, being acceptable, that that's all agreed upon and that everyone can do that flawlessly and that if you're not doing that, that there's something wrong with you and that needs to be changed.
[28:44] And so I think the unfortunate thing is I think the people that came up with those rules didn't understand autism from a sensory perspective because it's really new. It's maybe just in this last DSM that sensory is even part of it, these sensory sensitivity.
[28:57] So there's like no acknowledgement that the input was different, but we were expecting the same output from people. And so, and then it was deviant not to have that output and that people were going to interpret you this way instead of just being like, once you understand the input is different, it's really, I think, pretty easy if you have a working heart to be like, oh, you know, like, oh, you're left handed.
[29:16] Oh yeah, let's give you different scissors.
[29:20] So you're right. So much of the function is about, so much of therapy is about getting you functional and so functional for what? Like, so you can get back to work after you come back from the war, you know, so that you can meet other people, can make other people feel comfortable.
[29:34] And so like a lot of it is checking kind of what is the underlying purpose? Like, how does that bring, how does that improve that person's quality of life for real, not just in the shallow immediate, like, oh, it gets them invited to birthday parties.
[29:47] Like, is that the, you know, like again, it goes back to checking the ego of the person and that's yeah. That was the disillusionment, like leaving therapy and going into technology.
[29:56] I was like, okay, I gotta leave a lot of that behind.
[29:59] But then being like, oh, my gosh, technology just amplifies all of that. If we don't do it with very conscious design.
[30:05] Valerie Beck: Yeah. You know what really struck me when you said that is I. So I work with clients for personal growth and holistic wellness.
[30:15] And one of the things I often say to people is that your greatest strengths are also your greatest weaknesses. And now when you're telling me about how can you know that being resilient and, like, being able to, like, kind of steal through certain things and being tough and all that has been ingrained in our society for a long time.
[30:34] That we accept that that is quote, unquote normal.
[30:37] Because that was. That's what makes us functional. Maybe to go to war, maybe to do all these things. But you know what this also creates, I think, is we do create a society that is less sensitive to other people's needs.
[30:48] That is that values pushing through. And there is a cost to that, even to the person. People who are like that is that you. There is a something experienced that's missed out and a compassion that's also missed out on.
[31:00] So it's really interesting to see it from that systemic perspective.
[31:04] Dr. LouAnne Boyd: Exactly. Like the underlying assumptions, like, why do we think we exist? Are we here to get a degree? Buy a house, picket fence, 2.5 kids? That's a plan. But it's not everyone's plan.
[31:18] But we proceed as if it is. And we try to push them down that lane. And not everybody has to do that or wants to do that. And I think you nailed it.
[31:28] Valerie Beck: Yeah. Which means that we are up against quite. Quite an endeavor.
[31:32] Dr. LouAnne Boyd: Yes. Yes. We need to band together.
[31:39] Valerie Beck: Yeah.
[31:41] So this is a huge question. This is probably one that we will not be able to solve right now at all. But it is what our quest is right now.
[31:49] And what I see it as is that we are trying to shift the consciousness of society to be more readily adapt to a diverse population.
[32:02] Shifts in consciousness take something more than even just collective effort.
[32:10] Dr. LouAnne Boyd: That is true. In fact, I think that's what's taken me this long to even get here.
[32:16] I started in this field thinking autism.
[32:20] Wow.
[32:21] People should connect socially. That's so innately part of being human. We need each other. We need to connect. And this is a condition that doesn't connect to the mass.
[32:30] And I used to go into the approach of, like, you know, it's an 80, 20 problem. Like, society needs to change, but I don't have any power to change society.
[32:38] So I'm going to put all my effort into helping the individual change. And if they could come 80% of the way, maybe society could come 20% of the way and accommodate and be inclusive.
[32:48] And then that shifted somewhere and I got pushed on this by scholars and some other folks about why isn't it the other way? Why shouldn't they only, they're the one that are the outsider.
[32:58] Shouldn't they only have to come 20% of the way and society comes the other 80% of the way? And I'm like, yeah, I love that dream. I just have no idea how to implement that, especially as a single person out there doing this work.
[33:10] And, and now I'm at a point where I'm like, you know what? Doesn't matter. I have to just try. I just have to, like, get out there. That's why I took the speaking course.
[33:17] I just need to get out there and start being like, nope, it's our, it's 80, you know, and I don't even know if 80, 20 is, is the right number.
[33:22] But I feel like at least for this, this epoch and humanity, like, it seems like a lot more fair than doing it the other way. I feel like we've maybe we've shifted out of the, like, it's 80% your responsibility to get yourself back to work and to pick yourself up and to, you know, and society's only going to accommodate you.
[33:38] I'm like, I'm at least trying to flip it to the, the other way around, that the individual can be who they are and maybe needs to put in a little effort, you know, that we can, we can all grow, but that society has to do most of the growing in this, in this space.
[33:50] Valerie Beck: You know, I think another thing that comes to mind is that when we are more inclusive to other people, we are also more compassionate to ourselves because that includes all of us.
[34:00] If we can expand our acceptance of other people, we get to uncover the parts of ourselves that we've pushed down that we've considered bad.
[34:09] Dr. LouAnne Boyd: Yes, yes. And I actually think stigma, I mean, that's, I think the root of it, where it comes from, Right. When someone's bothering you, isn't, don't we always say that's a mirror of what's going on with you?
[34:19] Like, why is that so irritating to you? Like, that's a moment to check ourselves. It's like not only being compassionate to that person, but being compassionate to us, because that's A moment of like, oh, wait, why is that driving me crazy?
[34:31] What is it about that? And so I got a little story right there that I'm being reminded of. So I was asked to do this symposium in Japan to put together a three day agenda with a colleague.
[34:45] And we were supposed to bring celebrating the neurodiversity movement in technology to Japan, introduce it to, you know, a host of people there.
[34:53] And we were like, we want it to be fresh and something new. And already what exists is autism awareness. I mean, you've heard of April is autism awareness month, and that's a thing.
[35:02] And inclusion and accommodations, that's the legal requirement. Like, we have special education where we have to make adaptations for people with disabilities and things like that. So that's already a thing.
[35:13] And then I kept getting stuck on this idea of acceptance. Like, just because, you know, someone's different, do you actually accept it? Like, maybe you've, you've allowed them into the movie theater and you've given them a seat, but are you really actually okay with that?
[35:25] Like, that's a bit of work. I feel like we have not really. We've kind of glossed over. And so I feel like there's a space to do that.
[35:32] There is a lot of advocacy going on, groups that'll go out there and fight for equal rights or, you know, awareness. And that works important. But I felt like all of that exists.
[35:40] What am I going to bring to Japan that's new and fresh? The acceptance piece was a big part of it, but I'm like, how do I even elevate that once?
[35:46] What. What is ultimately the point? And I actually asked a colleague of mine and he jokingly said, we should celebrate autism, we should sell. And there already is the celebration.
[35:56] But usually it's just those things I mentioned kind of being inclusive, meaning inviting somebody in, but that doesn't mean you're necessarily accepting them or maybe accepting them. But really to celebrate this, like, that seemed sort of absurd in, in the way he said it, but I was like, okay, actually, that's the thing.
[36:10] So we, we titled this conference that. And I'm like, how do I actually implement that? What am I going to do? That's actually celebrating diversity across all of us. Not just celebrating, I mean, celebrating differences, but truly, honestly, what.
[36:21] What does it mean? Okay, Meantime, I discovered that my mom's autistic. And this is the big aha moment. Like, oh my gosh. Like, and then that moment, she was actually driving me crazy because she was.
[36:34] She has alexithymia, like an Inability. And this is all recently learned for me, where she doesn't recognize or articulate her own emotions.
[36:42] She's never given me a hug, you know, so there's been a lot that's like the whole history of like why I think the compassion in me is like wanting to connect really comes from never connecting with her in the way, in the normal way.
[36:57] So here I am. I'm going to promote the celebrating technology in Japan. But I'm literally kind of repulsed by the way my mother treats me and then having this realization that she's on the spectrum.
[37:10] She isn't going to do it the way I expected to. No matter how much I want her to. She's never going to give me the love I want the way I want it, the way I expect it, the way society's told me I'm supposed to get it.
[37:22] She loves me in her own way the best she can. And so that was the biggest, like, oh my God, like, like sometimes celebrating like now I like, what can I say?
[37:32] I celebrate different things about her, but doesn't mean I don't have these other challenges. But that looking back at me like that was that moment of like, I need to look at me.
[37:40] My expectation is this of her. And that's the whole. That's the wound in me. And so I feel like when we are repulsed or annoyed or disgusted by someone's behavior, like literally she'll do things that seem so cold and calculated and like just stabbing and then like having this awareness of why it's coming that way and then also reflecting why I need it.
[38:02] That, that is that inner work that I think being able to appreciate. Wow. That is a very different wiring than mine. And, and I think it's here to teach us something.
[38:14] Valerie Beck: Wow, that is really beautiful. Thank you for sharing that. And I think that really hits the nail on the head. I have to process that a little bit.
[38:23] Dr. LouAnne Boyd: I sort of have these out of body moments where I just talk and I'm like, I don't know really what I'm saying, except I'm just saying it because it's kind of just like these experiences that's they're here to teach us.
[38:33] So changing all of humanity. Like I think it starts with one story at a time and sharing the stories, like things through things. Like your podcast.
[38:40] Valerie Beck: Yeah. And I think just like knowing that everyone does have their own way of showing love and care can be huge and that you don't have to have it a certain way.
[38:53] Dr. LouAnne Boyd: Yeah.
[38:54] Valerie Beck: We're so, we're so bent on it being the way that we want it to be.
[38:58] Dr. LouAnne Boyd: Exactly. Yes, yes. And interpreting it a certain way, you know. Yeah. Like just all of it goes back to us and our ego and our expectation and our understanding. And so like you, I think your initial question was something along the lines of like, how do you.
[39:12] It starts with seeing it in yourself and recognizing, you know, so it's like celebrating like really appreciating that she can be that way instead of writing her off as a bad mom, which I did for decades, appreciating, like, you know what she's bad at that thing that's neurotypical that I expected of her.
[39:29] Yeah, she is really bad at that. But if I, but that's not what she can do. She's left handed, like she's left hearted. I don't know, it's gonna look differently and then.
[39:39] But she does these other things. Amazing. She's so creative and she's given me so many other gifts and. Yeah, I think, I think if the world can start seeing that people are really, really, we are really diverse.
[39:51] But you know, in the end it, it's all there to help us grow and be better together.
[39:56] Valerie Beck: Yeah, absolutely. I want to ask a slightly different question because I, I think I alluded to this before.
[40:05] Dr. LouAnne Boyd: Right.
[40:06] Valerie Beck: But there has always been obviously like a stigma to having autism. I feel like the more that we learn about each other, the, the less the younger generations have the stigma.
[40:17] Dr. LouAnne Boyd: Right.
[40:17] Valerie Beck: Like the same with everything.
[40:19] But do you find that, do most people, even if they, they don't, they, they're not telling everyone? Are they aware that they're different or are. Do they? Yeah, so there's a whole bunch of questions I think wrapped up in that question.
[40:34] Dr. LouAnne Boyd: But yeah, well, there's this idea of self stigma. So I think there are multiple buckets here. I think there are people that are aware and that are so ashamed they're going to hide it and mask and spend all their energy making sure other people don't notice it.
[40:48] And they're some of the biggest stigmatizers of other people spectrum. They're going to be the first to be like that's bad because they're spending so much energy, you know, and that, that actually is the scariest place for me because it comes off really toxically like they might, you know, and.
[41:03] Yeah, and then I think there are folks that are, are really oblivious because I think there's unfortunately or fortunately there's an overlap between kind of some autistic behaviors like alexithymia, not like kind of acknowledging or understanding emotion and then like kind of toxic masculinity.
[41:21] And those are very separate things. Toxic masculinity, bad.
[41:25] Valerie Beck: Right.
[41:25] Dr. LouAnne Boyd: Autism, diversity. But there's this space where they kind of intersect. And I think until we get some more, get some clarity on and on what the difference is there, we're not going to have people really outwardly necessarily saying, yeah, I'm autistic.
[41:40] Except the younger generation really is great about that. Like, you'll see TikTok, you know, everybody's like, everybody's autistic. It's like, yeah, let's, let's go there with that because like at some point being left handed didn't become, was, is not stigmatized anymore.
[41:52] Like, like it used to. I, you know, like instead of forcing people to be right handed, we've gotten over that. And, and I use that because autism is probably as frequent as left handedness.
[42:02] So it's like a, it's a nice. Oh yeah. Being left handed is no flipping deal. You just tell people and you know, except it's, it's bigger than that because it's not just how you use your hands, but it is about wiring in the brain and we, if we can make those switches.
[42:14] So yeah, I think so. The stigma, stigma is super, super huge. So that, that's kind of my journey is how do we, how do we really get a grip and look at the big, big, big picture about why do we need people to fit into a box?
[42:27] Why do we need them to be right handed? Why do we need them to behave a certain way? And if we can just kind of check in with ourselves and realize like we're, it's, it's all going to be okay and there's supports there to make it all work for everybody.
[42:38] It's going to be okay.
[42:40] Valerie Beck: Yeah, yeah, totally. All right, so I want to bring it back to your research and the technologies that you're working on. What do these look like?
[42:50] Dr. LouAnne Boyd: I'm so excited.
[42:51] Valerie Beck: Yeah.
[42:53] Dr. LouAnne Boyd: And this kind of loops back to the therapy thing about disorders and finding out, you know, kind of labeling them so that we can get people functional skills and get them back functioning in life.
[43:02] So I have this dream that there's going to be a future where we don't have these labels that we really look at things at the symptom level. We're kind of already there.
[43:10] And I think in Europe in the ICCD, 9, 10, there's more symptom based instead of having to have these actual clusters of disability like those, those again, like everything else are made up.
[43:22] We had to draw a, you know, ring around it and say you're autistic if you're in this side, but you're not, if you're just on the outside. It's like it's.
[43:28] These limits are arbitrary. So let's dissolve those and look just at symptoms and so. And then get people support with symptoms. So you have a speech impediment and you want to work on it.
[43:38] You work on that. That's a symptom that's not related to autism. I'm just using it as an example, say whatever the individual symptom is, if we can break it down and realize actually the symptoms of autism occur all of them, across all people in some degree.
[43:52] And that doesn't mean everyone's on the spectrum. That's not where I'm going. It's just this idea of when you take away the actual silo that's around it and you let it go, those symptoms kind of are everywhere.
[44:03] And we can. We can see them in ourselves and we can start breaking down this idea that. That we're actually even that different, that we're. That we're the same in the sense that we're all super complex and have these things.
[44:14] So my technology that I'm making right now is the idea that instead of using maybe a profile picture, like right now, we are so focused on. And stigma is so much about how you look, how you sound, how rich you are, where you're from, how, you know, if you're skinny or fat, blah, blah, blah.
[44:30] All the things that we judge people on, you know, we make these quick, snap judgments about people. And where does this get amplified by technology? Social media. So we've got these profile pics.
[44:38] They may be. They're glamour shots, maybe they're whatever. And that's great. And the mainstream is going to respond to that. But for the folks on the outside that might be judged by that, what if we could change the paradigm?
[44:49] Here's the zigzag. So instead of putting a profile picture, or maybe you have your profile picture and you can tap it and it spins around and there's an alternative, like we do with the avatars.
[44:58] Maybe it's a disco ball. And this disco ball is all these different brightly colored tiles, and each is a characteristic of you. And they're all in a positive light. They're all something sparkly about you.
[45:07] And we all have things that are sparkly about us. And so my use of technology is like, I'm going to break down stigma by showing, like, look, you can be autistic or not autistic and have similar tiles on your disco ball.
[45:18] Like, we have more in common than we have. Then we are different, right? And we constrict, appreciate. Like, if you were to meet somebody, like, you saw their profile disco ball before you ever saw them, and you realize they have, like, out of a thousand things, they have, like, oh, my gosh, 32 of these are, like, exactly like me.
[45:34] It really even matter if they're autistic? Do you even, even need to know if they're autistic? Like, if you know that you've got that common ground? Because I think as humans, we will always stick to grouping by affinity, you know, like, and so I'm.
[45:47] I don't think we can change that. I'm not trying to change that. I'm trying to leverage that. Like, if we're going to group light, like, let's find how we're common, and then the other things become arbitrary.
[45:56] So I'm making. I have an app that's a disco ball, and you fill out a survey. And right now, I use it as icebreakers in my computer science classes, where kids get to know each other first by what they have in common and what they're really good at and what they can appreciate about somebody.
[46:09] And folks on the spectrum could be really. You know, there's a stereotypical set of traits, like, about being really logical and really systematic and all these things that are great things to have in a teammate, and you discover that first, and you're like, I want him on my team, instead of the other way around.
[46:24] You see him walk in and maybe you've made a snap judgment about him and you don't want to interact with him. So I'm kind of leveraging social media, like, flipping it on its head, I hope.
[46:33] Or at least I'm starting with profile pictures and canvas in the online learning platforms. But anyway, that's the start of it kind of just changing the way we judge each other and having this metadata that tells us something much more about our rich complexity, you know, as humans in our.
[46:48] In our. In our strive, you know, to striving to get to the best place of ourselves we can.
[46:54] Valerie Beck: I think that's great. And you know what is really wonderful about that is that that that app isn't limited to people who are neurodivergent. Like, anyone can benefit from that.
[47:03] Dr. LouAnne Boyd: Exactly, Exactly. That's why I want Facebook to adopt it.
[47:07] Yeah, yeah. No, that's the idea. Is it never anywhere in there does it talk about even neurodivergence, disability, anything. It's just like, look at these things. So that is exactly it.
[47:15] Using mainstream methodology, like using what we all, you know, we're all there kind of promoting ourselves, curating our profiles and if we, we can use what we already do in a way to kind of learn more about each other in kind of a subversive way.
[47:30] Valerie Beck: Yeah. What have been the results you've seen so far? Anything particularly interesting?
[47:36] Dr. LouAnne Boyd: Yeah, I think it's. I've only been doing it for a year, so it's kind of, it's a brand new paradigm that I've just put together and only thing I've learned so far is that in computer science settings, when we do group work, which we do a lot of, or at least I do that in my classrooms and I'd say maybe a little more than half students are introverted.
[47:56] Introverted and extroversion. Another thing that we tend to prioritize, privilege extroverts. Right. We're kind of set up that way. I came from the psychology world, mostly extroverted people, mostly women.
[48:06] And then I go into an introverted world, mostly male. So I've like done a lot of this paradigm shifting and being like, wait, in this world we don't really privilege being extroverted, except for when you're in a small group and someone has to present.
[48:19] So a lot of computer science classes I have found there's not necessarily a lot of group work or presentations because it's a lot of math or it's coding and it's very independent.
[48:28] Things are very things that can be delivered. Non, not in a verbal way, but I purposely do a lot of these combinations. So what I found so far is that nobody seems to care if somebody's autistic or not.
[48:39] They just want to make sure there's one extrovert in their group. Like someone to do the project. Like we want one of those. So that extrovert could or could not be autistic.
[48:47] In fact, it's probably split half and half, you know, like, you know, so anyway, it's like breaking down the paradigms all over the place that people, you know, they kind of know what works well and making being different kind of irrelevant or obsolete.
[49:01] Valerie Beck: Yeah, absolutely.
[49:02] Dr. LouAnne Boyd: Yeah.
[49:03] Valerie Beck: And then seeing like finding the people who are going to be in your tribe, like who is going to be, I guess complementary. Yes to.
[49:12] Dr. LouAnne Boyd: Yeah, absolutely. Like what makes a good team? That's kind of the question we're asking now is like because we need a place to do this, it's you know, like the disco ball is a profile picture on social media.
[49:22] That's a really big long term project to measure and to figure out if it has any impact and if it, you know, do we ever ultimately change the suicide rates?
[49:30] I mean, that would be like the million dollar question.
[49:33] And I think it'd be, you know, it's going to be belonging and how do you feel like you belonging. Where's a small unit of that? I can measure small group projects in a classroom with actual people whom a quarter of, quarter or more of are probably on the spectrum or neurodivergent in some other way and directly measuring it and saying like, hey, can we just learn to form teams and communicate and be connected and belong in that space?
[49:56] That's, that's the beginning.
[49:58] Valerie Beck: Amazing. All right, well, to close off our conversation, I want to ask you what do you see as your role in the future of how all this develops and what are you working on right now that you really want to share?
[50:13] Dr. LouAnne Boyd: Yeah, so I think, I think by focusing on, you know, we've already kind of broken the mold of, with the neurodiversity movement of autism being something we need to fix. Now it's going to be like, how do we go to doing my five A's, which are starting with the awareness and moving on to accommodating folks that need things done a little differently, like left handed scissors, moving on from there to true acceptance.
[50:38] A next step would be moving on to advocating that you get to a place where you're advocating for somebody who has a different need than you because it just makes sense, the right thing to do and then truly appreciating to put all those things together.
[50:49] I, I want to do that not only in my technology through these celebratory technologies like the disco ball, but also public speaking, like getting out there and sharing this message about diversity, equity, inclusion, like on bigger stages for mainstream audiences, just like the whole public, like spreading it out.
[51:05] So that's kind of my goal is to kind of, to do it not only in my professional life, but kind of extended to have kind of almost like a side gig where it's like I just feel compelled to go beyond kind of my classroom, my research, kind of just a bigger stage and because I think it's a.
[51:20] Yeah, it's a big message to get 80% of the world to change or for us all to change. 80%.
[51:24] Valerie Beck: Right.
[51:25] Dr. LouAnne Boyd: That's a, that's so.
[51:26] Valerie Beck: Yeah.
[51:27] Dr. LouAnne Boyd: So I'm going to probably be busy hopefully.
[51:29] Valerie Beck: Yes.
[51:30] Dr. LouAnne Boyd: All right.
[51:31] Valerie Beck: If and then are there any resources that you can recommend either your own books or otherwise, where people who are really want to start to understand more about neurodivergence can reference.
[51:45] Dr. LouAnne Boyd: Right, right. I mean, I would go back and cite that neurotribes book. That's just what's coming to the top of my head at this moment.
[51:52] And I mean, another great place is just the crowdsource information on TikTok. Honestly, there's so much great information there. I mean, when folks even, especially in my family, like extended family, when people realize they are on the spectrum, they're like, where do I go?
[52:07] And I'm like, where Everybody else goes. TikTok. I think those are great resources. And then of course, if people wanted to engage with me directly, I'm on LinkedIn, of course I could interact with people there.
[52:18] I think those are great starts.
[52:20] Valerie Beck: Amazing. All right, well, thank you so much, Louanne, for spending time with me today. This has been a wonderful conversation.
[52:29] Dr. LouAnne Boyd: It's been great to connect with you.
[52:30] Valerie Beck: Yes, thank you everyone. Well, thank you for joining us, Dr. LouAnne Boyd again. We will see you next time.
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