101: Bonus Episode: Autism (actually) Speaks with Kathleen Walker
As we continue with our series on autism, I’m joined by Kathleen Walker for today’s bonus episode. We discuss the basic criteria for autism, her experience as a child with an early diagnosis, what it’s like for an autistic person to “play by the rules” of business etiquette in the workplace, and her advice for parents of autistic children. Join us to learn more from Kathleen!
Show Highlights:
The first criteria for autism: “persistent deficits in social communication and social interaction”
Kathleen’s perspective on her social communication and interactions as an early-diagnosed child
Examples of how an autistic person might “miss things” in interaction and communication
Challenges for the autistic person in a professional career vs. in personal relationships
Masking and modified behaviors to be accepted
Kathleen’s suggestion for rewriting the DSM criteria based on communication/interaction
Helping autistic kids feel comfortable and navigate the world in their own ways
Kathleen’s experience with social difficulties around conversations, nonverbal cues, and anxiety
For an autistic person, connection in relationships might not be a top priority in life.
Kathleen’s experience with “repetitive and restrictive interests, rituals, and schedules
Kathleen’s advice for parents of autistic children
Resources and Links:
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Get KC’s book, How to Keep House While Drowning
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KC 0:10
The first criteria for autism is persistent deficits and social communication and social interaction. So just taking that statement like at face value, do you feel like that applies to you.
Kathleen 0:25
So I do feel like there are ways that I communicate differently from allistic people or neurotypical people. And I've always felt that other people have some sort of internal programming in their head that is kind of telling them what the rules are, and what the boundaries are, and the social interactions that I just don't have that programming. But for me, personally, it's really hard to tell how much of that is really true. And how much of that is really based in my experience growing up as an autistic child, because I was diagnosed so early and put into social skills focused training so early, that it was kind of drilled into me that there are these things around you that you don't know about, you have to be on the lookout for them all the time. Be hyper aware of everyone's emotions, and however, what is reacting to you and then be able to adapt your behavior according to that. And so it's really hard to say, because that was so early on, for me how much I would feel that way, you know, without having had that training. But I know it is a really common experience, especially for autistic women and people who are assigned female at birth to grow up feeling like, you know, there's an aspect of these interactions that I'm just missing. And I think another piece of that is, I think a lot of the DSM criteria are framed in terms of deficits, obviously, because they're kind of clinical symptoms. And I work in health communications. So I have that perspective on some of this language, too, which has been really interesting to unpack some of my childhood experiences, you know, in terms of that language over the past few years. But I think the deficit framing makes it seem like there is a correct way to have these social interactions and a correct mode of communication, and you're not doing it correctly. And so that's the criteria for the diagnosis, when if you look at it objectively, at least in for my experience, just speaking for myself, I think one way of communicating is not more correct than the other, it's just that I'm being asked to assimilate into what the expectations are of people around me. And I think some people that pressure is put on them more than others. And because of my family situation that came pretty early in life. So
KC 2:36
you do feel like sometimes there's maybe something in the conversation that you're missing, but you're not really sure, like, am I feeling that because I was so conditioned to look for it, or to be anxious about it, or to expect there to not be something there? Or how much of this would I be feeling if I hadn't had that kind of programming?
Kathleen 2:58
That's exactly it is I know, at this point, and it's interesting, I've been going through therapy the past few years, and really learning about myself as an autistic person. And now that I have that perspective, I understand what that is, well, I was trained to look for these things. And sometimes there are things that part of it for me is when there's a lot of things going on, it takes me longer to process the stimuli that are happening. And there are times that I miss things, but also, why does that have to be the end of the world for everyone around me? And why do I need to be made to feel like I have to cover that. And so I think being really aware of that now I'm in a much different place that I was for most of my 20s I just felt anxious all the time and didn't understand why it was happening. Because I had this treating and this awareness of being different. But I'd point I just wanted to run away from being autistic. Because it was so much the focus of everything growing up that it was like, I can't acknowledge that nothing is about that. I'm just anxious all the time in these social situations. And there's no reason to have any context around that. And so it's really interesting now, looking back and understanding, you know where that conditioning comes in. And also, there are this aspects of how I process things differently. And both of those things can be true. And I think for a long time, it was hard to hold that both of those things can be true, if that makes sense. So
KC 4:17
can you give an example like if someone's listening, and they're like, Well, what do you mean miss things? And like they miss things socially? Like do you have maybe an example that you could give that might sort of illustrate that for us? I
Kathleen 4:31
think there's a few situations where I tend to feel more self conscious of these type of traits. And there's a lot of situations where you know, people might be just implying, I think it honestly it comes up most often in work situations for me because that's where I tend to be really most self conscious of these things. Often there's an implication of oh, we're not supposed to tell this person this thing or this person isn't supposed to have this information or we're just all going with this polite fiction, but we're not going to acknowledge that or say what we're doing. And and I think I've learned to recognize is patterns of the way people communicate, especially within organizations. I think that's tricky for me. Because my instinct is to say, well, everyone needs all the information, or else we're wasting time. And that doesn't make sense to me. And I feel like I know a more logical way to do things. I ran into trouble earlier in my career, because I would just say what I thought the problem was, and you weren't supposed to acknowledge the problem, or things like that, depending on your job, it can be a big gray area, and there can be situations that would be challenging for anyone to navigate. But for me, it feels like I'm coming into that situation without understanding what these unspoken boundaries are. And as I've learned to advocate for myself more and actually share my opinion as part of my job. I think there's this interesting thing that happens, where when you're not making every decision based out of fear or trying to hide or cover up, then you have to decide, well, then what is it worth it to speak up about these things? And you know, when is it worth it to take the risk and know that people might think I'm annoying, because I'm pointing out the elephant in the room, the
KC 6:17
professional world would be harder, because at least in personal relationships, there's like a degree of intimacy you can get with someone where you're speaking really freely, whereas professionally, there really are so many unwritten rules about what you do out what you don't talk about, I have worked in a couple of places where I was an executive, and it really hit me when you were talking about like, oh, this person isn't supposed to know that. Because you could talk about somebody's job performance. And it's like, understood that you're not going to walk out of this room and talk to that person about it, right? might become an official thing at some point, or like, Hey, we're really thinking that this person is not gonna make it or like, Hey, we're gonna make some internal chefs. But obviously, you're gonna do a bunch of work in the background before, you know, six months later, roll that out to whatever staff, it totally makes sense to me. I mean, we're just so over the top I think it workplaces with being with with etiquette,
Kathleen 7:13
I think it's interesting the ways that that shows up because it leaves out a lot of people. And it's not only autistic people, though, I think that's a big part of it. But people that didn't get socialized into the the corporate etiquette or business etiquette or, you know, people that didn't have that internship experience that is often unpaid in college, or all of those things. We're not giving everyone the rulebook. And that's really frustrating to me, I think I do have a pet peeve about kind of unspoken expectations. And that's a thing that shows up and showed up for me when I was growing up as well, I think my family often just expected me to kind of pick up on things and you know, guess when I'm supposed to go help out with the tours or something like that. And when it didn't happen, I would be lazy, or, you know, I'm not complying with the rules or, and, and it's so weird to me looking back on it, because they were so hyper aware of autism. And yet, it's like, they didn't understand the internal experience of that, to the point that they're just focusing on, you're not coming to wash the dishes, you know, you're you're focused on your buck, and you don't want to get up and interact with B or whatever it is,
KC 8:26
you know, it's when you're talking about that, you know, I took both of my girls to the pool yesterday, we have like a neighborhood pool. And, you know, trying to help your kids learn social skills is really nuanced. Like, yeah, you know, my, my five year old is not autistic. But even then it's like, okay, so you know, she's playing with a friend. And there's another kid that's kind of like, doing the what I call like, the distance, which is like, Okay, I want to be close enough that you can see that I want to play, but not so close that you feel like I'm intruding. I'm just hoping you notice me and tell me I can, right? And so sort of letting her know, like, hey, when you see someone kind of standing there and just looking at you, they're probably waiting for you to ask them if they want to play. So she's like, okay, great. So we talk about like, oh, including, including, including, but then like, you know, there'll be a little girl that will start being kind of mean, I'll be like, Okay, so when someone's mean to you, we don't You don't have to play with them. And then you can see her like looking at me like yeah, so that gave me one instruction, like always be inclusive. But then there's this other instruction about like, don't play people that are mean, you can just like see her
Kathleen 9:39
being like, like, how do those two How do I reconcile these two things? Yeah, exactly.
KC 9:45
Because for I think for many non autistic adults, there's a part of understanding how those two quote unquote rules go together. That's just intuitive. Yeah,
Kathleen 9:54
totally. Yeah.
KC 10:00
For kids, it's not intuitive, but I could see how it never becomes intuitive.
Kathleen 10:05
So early in childhood, I think I kind of learned to build a really sophisticated mask is that I think a lot of people pick up masking just, you know, naturally in terms of oh, people respond better to me when I do XYZ behaviors. But for me, that was explicitly taught. And so that was very much, you know, you have to pick up on all these rules, and you need to be constantly watching what other people are doing and modifying your behavior. And it's, so it feels like such a double edged sword, because I think, you know, I can't guess where I would be, if I didn't learn those skills, you know, I might not be able to basketball enough to have a full time job, because there are so many pieces of the workplace that are those type of expectations, just in terms of culture, and understanding how to navigate the workplace. And, you know, I might not be able to do a lot of the things that I've done if I haven't, hadn't had that sort of training. But at the same time, it really was traumatic in a certain way, that has caused a lot of problems. For me with being able to maintain relationships and being able to maintain communication, I think I was just alienated from myself, in a really profound way that is hard to really explain. It's so interesting, watching kind of the dialogue about masking the last couple of years, especially on social media, I don't think we really had that term. When I was younger, I know people used to talk about, you know, imitating other people or social rules and all of that, but I don't, I wasn't aware of the term masking, you know, as a kid. And it's so interesting to watch the ways that people talk about it. But it's also a really complex choice. Because, you know, once you're no longer making every decision out of this subconscious, like, I have to cover everything up and not let anybody know that I have these certain traits, then it becomes kind of this complex decision process of is it okay, if this person thinks that I'm a little strange? And you know, is it okay that I'm, they don't like my body language, or whatever it is. And that's a different calculus for everybody. And I think I'm seeing a lot more nuanced conversation about it now, which is great. Because I think, you know, I do have certain privilege that protects me, just being a white woman out in the world that other people have a lot greater risks, if they were to look unusual, or behave in certain ways. But there is a risk for me just especially, you know, going back to the workplace, like, a few people know that I'm autistic, I haven't officially disclosed and, you know, I, I ended up kind of having opportunities to share my perspective on disability topics at work working in health communication. And people seem to really appreciate that perspective, but then they often don't realize when they're perpetuating kind of the invisible rules of the workplace in the same moment. So yeah, it can be tricky, because, you know, I've gotten feedback on things that I'm like, Well, that's an autistic trait, and I don't know how much I'll be able to change that. And, you know, I can learn, but I've already been learning for 30 years. So you know, I don't know if that's really going to improve. And so there can be this reality that you can be really good at your job. And, you know, in certain situations, if people don't like you, that's going to be a problem. And, you know, you have to figure out how to respond to that. So it can be really complicated.
KC 13:28
How would you write that statement differently? Like, as I'm listening to, you kind of describe, like, how you experience maybe like, that different form of communication and trying to interact with that, like, neurotypical sort of prevailing culture, you know, if if you had to write like that line of the DSM, you know, what would it like? How could you rewrite that that would better describe your, whether their difficulties or your relationships or your interaction with that aspect of your autism?
Kathleen 14:01
I would say it's a direct communication style. It's a way of communicating that focuses on content, rather than subjective emotional responses or context, I would say it's just a different communication style, rather than, you know, necessarily being a worse communication style than the norm.
KC 14:25
What I find sort of interesting whenever I talk to people who are autistic, and there's there really is that heavy emphasis on like, you know, something that's literal, something that's concrete, the content of what we're talking about, I'm not really tuned in to the emotional aspect. And one of the things that I've noticed I noticed this more with like younger autistic people, is that they'll say like, I'm not, you know, the the emotional stuff doesn't make sense to me. I only care about the content and only focus on the content. And sometimes that almost morphs into this. I idea that like, I'm above irrational emotional experiences. Yeah, the truth is like, even if you're autistic, you have emotions and emotions are always logged on. So like, you might experience some of that dysregulation or defensiveness or feeling uncomfortable or awkward, like any of those things that don't make sense. And so I'm curious from your perspective, like, if you've seen that on maybe on social media, or with other artistic brands, or even in yourself, and kind of how do those two things play where it's like, well, you know, I just prefer content, but at the same time, it doesn't make you not an emotional human being.
Kathleen 15:44
There's a couple of sides to that. And I think one is, I also feel like I'm a really intuitive person, and I do pick up on people's emotions really strongly. And I think, especially when I was growing up, you know, I was born in 1991. And that was really the beginning of the public understanding of autism. And a lot of ways in there was this perception of autistic people just don't have feelings. I think there's been a little bit more nuance with that over time, but it's still kind of a stereotype. And I felt kind of confused by that, because I felt like I was picking up the emotions of everyone around me, and I'm really, you know, strongly connecting with whatever is going on in the household, I'm feeling those emotions. So to me, it seems like they're almost two different systems, like there's an emotional system, and I might really connect with how someone is feeling. But there's the separate system of communication in terms of the words and the content of speech. And I guess, things are just kind of in two different buckets. For me, it's, it's not always the same pathway. Because of of having that social skills training, I
KC 16:45
think I do pick up on a lot of emotional cues and conversation, it's really interesting that you say that, because I think that your that's you like hit the nail on the head in terms of, it's not that you don't possess the emotional aspect of it, where you have emotions, you see emotions, you understand emotions, you pick up, there is that intuitive, emotional stuff. But I think for like a neurotypical person, those pathways are like entwined, right, the content, you know, pathways. And so the ability to kind of understand something in like this big kind of bundled up wire that has all those different wires in it, like the communication is going through all of that at once. And it's interesting, your description of it's not that I can't do both of those things. It's that like, they are in two separate wires. And I'm not really processing a piece of information through both of those channels simultaneously, like other people sometimes appear to be,
Kathleen 17:45
it feels like kind of two separate processes for me. And I can understand what you mean about people maybe having a kind of a sense of superiority or a sense of, oh, I'm rational, I'm not emotional. And, you know, I think sometimes that can go to a place that's not productive. And I can see how that could lead to, you know, really dangerous thinking. And I do see that sometimes on social media. But I think I had a little bit of that perspective, when I was a teenager, probably, because I think the way that I reacted to, you know, learning, Oh, you, you really have to watch out for all these things and take care of other people's emotions all the time and make sure everyone else is comfortable. And it wasn't about me at all. The way I reacted to that was, well, I'm different. And I'm going to be who I am and to claim any type of autonomy that I could have. And one way that that showed up was, you know, I always love learning. And, you know, I'm not as great at memorization, which is one way that I think that's common among some autistic people that I was, quote, unquote, gifted in certain areas. And I'm a writer, and I would get a lot of commentary from teachers and students about my writing and how talented I was, and etc. And I think that was something I really clung on to because it was like that something positive about my self identity that I can build, you know, my sense of self around, and I didn't feel like well, other people are stupid, why are they communicating this way?
KC 19:21
Every teenager, you know, has this, here's what I'm good at. And so let's lean into that, because that feels good. And so, yeah, I appreciate that perspective. And I wonder too, like, when you talk about having an intuitive sense of people's emotions, how much of that do you feel like is maybe inherently intuitive? And how much of that do you feel like was perhaps a result of, for lack of a better term and some low grade trauma where it was almost like a survival like you had to sort of pattern recognition, things that are happening? anything so that you could kind of keep a hold of what was happening? Yeah, I
Kathleen 20:04
think that's intertwined in an interesting way for me, because it's, I do think I've always just had an intuitive sense of what other people are feeling. But I think what I really learned to recognize was those external cues in terms of how was this person responding to me? You know, how is this person? What face are they making? What behaviors are they doing, etc. And that almost comes down to maybe the split between content and emotion too, because it's kind of like that's the third thing is recognizing the body language cues, or, you know, how this person is acting. Whereas I think the way that I maybe naturally feel emotions is more just really intuitive in terms of picking up on their, almost their vibe, I know a better word for it, but just picking up on their energy, and their vibe, and maybe not necessarily being able to label that. But feeling like I'm on their wavelength, and I'm feeling what they're feeling. versus, you know, I think what I really learned how to do was to pick up on those cues that they're giving off. And I think what was really interesting when you mentioned, you know, teaching kids to understand social skills, is I do think that's important for all kids. And I think everybody was doing what they could with information they had, I look at it as kind of a bad game of telephone, in that it was very early. And like our cultural understanding of autism, they were really damaging messages out there, you've probably heard like some of the Autism Speaks commercials with the scary voiceover like that's what was out there. And these vaccine claims that were being legitimized about vaccines causing autism, which is fascinating from a public health perspective to me now. But all of that was kind of what was circulating out there. And then based on my mother basically raised me almost as as almost as a single parent, and based on her own context, and her own, you know, emotional situation and personality, the way that she interpreted those things was, you have to give this child a normal life, which is, I think, a thing that a lot of parents of disabled kids think, but to her that meant, everything has to be about that kind of masking and presenting to a social standard and behaving normally. And I think that's just what was out there in the water at that time. And she wasn't alone in that. But the way that she interpreted those things through her own lens, was what caused a lot of that damage. And so it's really hard to put your finger on, you know, oh, there's this, of course, I shouldn't have gone to speech therapy or something like that, because I'm sure aspects of that were helpful. But it also, you know, that's where that that double edged sword comes in of, you know, I think, looking back on it now, and seeing a lot of the messaging that's out there today, I think a lot of it could have been presented more as let's help this child be successful in the way that they want to be successful, or maybe be independent, which is even a loaded concept in and of itself. I think a
KC 23:08
lot about that, well, how can I teach my daughter to understand the people around her so that she has the information without imparting that she needs to conform to the people around? Yeah, I think because, you know, you want to them to understand, but you also don't want to give this message that, you know, you can't be who you are,
Kathleen 23:35
I actually enjoy reading young adult and middle grade books. And you know, I've read some some of those books recently that are by autistic authors and about, you know, autistic kids stories. And one thing that I've noticed is a common theme is when you see supportive parents in the story, they're kind of playing this role of, you know, how can I help this kid be successful? And also, you know, help them feel comfortable in the world and help them navigate the world on their own terms, but also, you know, walk this line of teaching the social skills. And I think it's really about the framing, and that, you know, is it we're trying to support this child and help this child or are we help trying to help them fit in, and I think that's really a mindset. But at the same time, I know, it's such a gray area, because until that bias leaves our society and I think that's really hard to accomplish. Kids are when they grow up, they're going to have to navigate you know, if they want to work in a corporate environment, or if they want to, you know, fit into certain parts of society. They do have to navigate like, these are the ways that people are going to respond to you and you need to pick up on some of these behaviors. To me,
KC 24:47
I sort of think of it as the difference between communicating, you should say thank you versus when neurotypical people interact, and they give you something they typically expect to hear. Thank you. And if they don't, they typically read that as, as you're not seeing gratitude. Like you could explain what's going on without making it like you're a new shoe holder is wrong if you don't do this, but that's such a high level of thinking that it's like, okay, you could have that conversation with a 12 year old problem. Yeah, like Canada. Meantime, how do you help your four year old, though? So it gets really tricky. Did you do ABA?
Kathleen 25:25
So the therapies that I went to were not my family doesn't remember them being labeled as ABA, I had speech therapy that was very social skills focused, and then occupational therapy. But just based on the time period, I think it's really unlikely that there were not aspects of ABA in that, you know, I think that's that's also an interesting distinction that I think a lot of the narratives that I see, you know, from autistic adults today are either late diagnosed, which is, I think it's really important to share those experiences and focus on you know, the trauma of not knowing that you're autistic is really important. And then there's people who are survivors of ABA. And I don't see a lot of people me that, you know, were harmed by these systems, but it wasn't explicitly called ABA. I've definitely learning about people's experiences in ABA, I think that's, it's kind of a similar conditioning, if that makes sense. Well, and
KC 26:24
it sounds like, at the end of the day, being an autistic person and interacting in a neurotypical world is inherently traumatic. And so yeah, I think that's there's, there's no like, perfect parental response or perfect therapy or perfect, like, oh, and so there's this sort of like, okay, well, even even when you get maybe the best out that that's possible, as far as a parental response, or a therapy or an environment or whatever, there's still going to be trauma and difficulty and they're still going to be and I don't mean, like life ending trauma, but like, you're still going to look back and go. It's unfortunate, like, there just was no way for a for me to get shepherded into this particular world, in a way that wasn't going to leave some, like, significant bumps and bruises in my psyche.
Kathleen 27:23
I think for me, just because of the time period that I grew up, it was so unusual for girls to be diagnosed at that time, and I was diagnosed as a toddler really early. I have wondered, you know, what would have happened if I just wasn't identified? And that's a sliding doors moment that we can't know. Yeah, I see a lot of people that were late diagnosing, Oh, if only I knew, you know, everything would have been better. It would have been this great experience of knowing myself, it is traumatic not to know yourself. And I can only imagine, it's also a really hard experience to have people reacting to you negatively and not understand the reason why or not understand where those differences are coming from. That's just a different type of trauma to unpack. But there's also I think a lot of people don't realize the ways that diagnosis can cause harm, and especially in the historical context of Yeah, what information did parents really have at that time? And you know, what was really going on in her culture at that time? That was like, just a lot more bald faced ableism, then, you know, we're not, I think now, you know, a lot of organizations are kind of trying to look, clean up their image or look like, Oh, we're listening to disabled people. And there, we weren't there yet. There was none of that. It was very much just, you know, how are we going to save these kids? And like, I think about, you know, what, I would love to do a study on, like, what does it do to people to just screw up with that on the TV? You know, knowing that this is a disability that you have, and that was just the background noise of like, Oh, why? Why do all these kids exist? And is it vaccines and like, what do we need to do about it? And not really even processing? You know, what that means at the time, but looking back on it, and now working in public health and like, oh my gosh, that was the most communication
KC 29:22
nightmare. Okay, so let me ask you this when it comes to the what the DSM says about their examples of social difficulties, quote on you, they mentioned a trouble with the back and forth flow of conversations, trouble with nonverbal communication, eye contact, tone of voice, body language and difficulty making and maintaining relationships. So do you relate to any of those examples? And if so, what is that like?
Kathleen 29:52
Yeah, I think the back and forth is something that I struggled with and that's probably the one thing that is most straightforward. As an autistic treat, rather than the conditioning, because I think that's something that I've always kind of struggled with. And it's just really, I think, again, it's kind of picking up on those nonverbal cues and like, those signs that someone's not done talking and things like that, that can be hard to pick up on. The other part that I can relate to is definitely the difficulty maintaining relationships. And I think that's where it's harder to tell, you know, how much of that is autism, and how much is just my experience. And, you know, I thought of myself as somebody that had social anxiety starting as a teenager. And now I've learned that a lot of those anxiety symptoms that show up are symptoms of complex trauma that are showing up and how I interact with people. I've had for a long time, I've kind of struggled with this pattern of ghosting, or, you know, just kind of disappearing from people's lives because I want to make those connections. And, you know, I've had some really deep friendships in my life, and I've had that level of, of intimacy. And then it's like, I get to a certain point, and I think, oh, no, people can see me, and you know, I can't live with that. And I can't let people see who I am. And I just have this pattern of running away. And so that's really the, the cycle that I'm working on now. And trying to understand that and try to figure out, you know, a better way to live with that. Well, when you
KC 31:35
think about like, difficulty in relationships, the more I talk to people, the more I wonder, like, you know, it's not like they're some objective autism, God that, you know, imparted this DSM criteria and all of its infallibility, right, like this was clinicians observing autistic people, and autistic children. And it's interesting because this one in particular difficulty maintaining relationships, it's written as if the difficulty is inherent in the autistic person. And not that the difficulty comes from the broader society, not understanding autism, not tolerating autism, not understanding autism, because so many people that I talk to when they talk about their difficulty in maintaining relationships, it's very commonly the same pattern of the idea that autistic people don't want relationships is a stereotype. I do want relationships, I do need connection. But the ways in which I have attempted to make connection with people are so often rejected so often traumatic, so often have become obvious to me that I'm a burden or that somebody doesn't want to put up with it, that it's just easier to give up, it's just easier to pull back, it hurts to know that real friendships kind of fall out, or someone gets in and sees me and I kind of back up a little because I don't know what to do. And then those become difficult. And it's like, you know, is this really a trait of autism? Or is this a commentary on the autistic experience?
Kathleen 33:13
That's another one of those things where it's saying the trade has difficulty in relationships, but a relationship is a two way communication. And you're looking at one side of that, there's a way that you know, humans are inherently social creatures, or that's the narrative that we hear all the time. And I do, I feel like I need connections, maybe maybe less than some neurotypical people, but I still need social connection to. But I think there's a way that that autistic people kind of challenge the expectations of what it means to be human. Because we may experience that connection differently. Or, you know, maybe it's not our top priority in life, maybe our interests are more of a top priority. And connection shows a different place in our life. I think when people have these biases, they don't realize that their biases because they're, it's like, that person just seems weird, or that person, you know, rubs me the wrong way. Or they have they seem shady, or whatever it is, can show up in funny ways. It can also be really dangerous because that bias can come up in dangerous ways depending on who is who is judging the interaction. I've seen some people saying online like people will say like, I'm such a great ally, and I support autistic people and then make fun of that
KC 34:33
even the things that people are making fun of on their face be something you would see in an autistic exactly especially like they're not recognizing that after learning about autism, looking back at my childhood and thinking about those students that were always picked on or those students that were always seen as weird. Not a one of them. Can I now think is neurotypical like when you look back at Oh, yeah, yeah, that's always just reading books. It's never talking to anybody just sitting in the corner at recess and girls would go, and you'll invite her to learn a dance. And then she wouldn't realize they were actually making fun of her like, and so then she would go back to her book. And that's all she did. It's like, oh, she was probably autistic, following the pack of kids around and, you know, didn't really catch the social cues, and it was talking way too much. And it's like, oh, it really does challenge those ideas of like, who is weird? And who can we just put out and who can we write off and, and who's okay to think that about
Kathleen 35:33
one thing I found really interesting in, you know, going back, and really kind of starting to accept myself as an autistic person, and reflecting on my childhood, and all of that is reading other people's experiences, there are traits or you know, common experiences that autistic people share, that I never picked up on as a part of autism or a common trait until I heard other people describe their own experience, even though my family grew up with, like all the books of the house, and you know, all the all the education. And, you know, learning about that, in the early days of the internet was a whole other thing. We had all the information that would have been available to parents pretty much at that time. And yeah, a lot of it was that focused on how to train your kid. Like, that's a piece of it. But I didn't really get that sense of, you know, other people's internal experience until I started, you know, reading memoirs and reading fiction and in reading, you know, social media accounts by other autistic people with understanding like, oh, that's what this is what I'm having, you know, I think, Have you have you seen Helen Hwang's? She's a romance author, autistic author that writes about autistic characters. And I think her books were some of the first that kind of broke through as like, pretty popular like fiction books with autistic characters. And there was a scene in one of her books where the main character, when he gets bad news, he kind of gets overwhelmed and he becomes clumsier. Like, he starts dropping things. And, you know, he's not able to complete these like tasks that require manual dexterity. And that's a part of how he's shutting down. And I had always heard the term shut down growing up. And I think there's, maybe the language is evolving a little bit around that. But we used to say, You're shutting down if you're like, not capable of interacting or not capable of doing what you need to do. That's kind of an artistic shutdown. And that's what this character was going through. But I had never recognized like, oh, yeah, I do start dropping things. And like, it's harder for me to focus on those type of manual tasks. When I'm upset or overwhelmed, or, you know, I get lost more easily. When I'm overwhelmed. I have no sound direction. So that's already not great. But I didn't recognize that until I heard that description of that character's experience. And it's so interesting, like how shifting that perspective can change the way you think about your own internal experience. Okay,
KC 38:11
I want to be respectful of your time and close on time. So I just have one more question. In the DSM, it talks about repetitive and restrictive interests, rituals, schedules, things like that, tell me if and how you relate to that, or see that in your life.
Kathleen 38:28
The main way that that shows up for me is if I get interested in a topic, I just want to learn everything about it. So I'll do a real deep dive, and I'll learn everything that I can about that topic. And usually those things will go on for months or years at a time. So I have some things that are kind of lifelong, like, I've always had a really strong connection with animals, and especially cats. And so that's something that's really stuck with me, throughout my life. And I also get into just random, random topics for a long period of time now. So especially now, I love podcasts, you know, I love reading and learning new things. Recently, I've gotten really into learning about multilevel marketing, and that has no relevance to my life at all. It's just psychologically fascinating to me,
KC 39:14
and talk about that, yeah, we're ever by the way. What about like flexibility and in flexibility in your life? Do you have things in your life that have to be the same every day or activities that need to be the same that you get distressed if they're different?
Kathleen 39:28
I benefit from having a consistent routine. I don't think I have as much of a strict routine as as some autistic people that I've heard. Some people really need to do things at the same time every day. I think that's not as much a piece of it for me. Sometimes people might see me as rigid in the way I communicate or my thought process and that's something that is really difficult for me, because it doesn't feel that way. internally. It's just, you know, expressing the way that I'm processing information. You know, for example, just the other day, I was talking to a friend, and we kind of had a different perspective on a certain topic, basically, it was, you know, I saw two categories is really mutually exclusive. And she was more Well, obviously, those are connected, and they're part of the same thing. And I thought, well, I just never saw it that way. And some people will look at that and say, That's rigid, that's black and white thinking, you know, and that's automatically lessor. And I don't, I don't know that it is, I think it's just a different way of looking at concepts. But people perceive that as being rigid or being inflexible. And I think that can be really frustrating for me, because I caught myself kind of getting nervous and thinking, Oh, is this person going to notice that I'm not flexible enough, or I'm thinking about this in a black and white way. And that doesn't really matter. But that's just that, you know, that hyper vigilance, it's been kind of ingrained that I'm focused on that. So there's a part of that that's really rewarding to recognize those moments and unpack it and say, Okay, in this discussion, it doesn't matter. But there are some situations in life where you might be people might look down on you, or, or, you know, treat you differently because of that. So I think that's more where the rigidity aspect shows up for me. So
KC 41:16
in closing, do you have any advice that you would give parents of autistic children?
Kathleen 41:22
One thing I've seen a lot more in the past few years is just Parents Learning from autistic adults. And I think that communication really didn't exist when I was a kid. And that's honestly the the best thing to start with is just be willing to learn from people and learn from autistic adults with very different experiences. It doesn't have to be all people that were diagnosed when they were two, in the order, you know, people in a certain group, I think it's important to learn from people with very different experiences and perspectives. As somebody that works in health communication, I see, there can be a big divide between parents and autistic adults. And I completely understand the reasons for that I think a lot of it is rooted in traumatic experiences, and on both sides really, in the fact that the information that parents are getting is still largely that medical model, you know, very strict definition of these external facing behaviors. And for parents who are not autistic, I think it can be hard to relate to that internal experience, if what you're hearing is, oh, they talk too long about this topic, or they're not playing with the other kids appropriately at school, or whatever it might be. So I really have empathy for parents and for the autistic adults who have experienced harm. And for the autistic kids that are growing up today, with the world changing as fast as it is, and our perspective on autism changing as fast as it is. What I would say to parents is just be willing to listen to different perspectives, and don't immediately get defensive or stop listening. If someone acts in a way that seems rude or seems like they're angry. And I think it's important to be willing to listen to people who are not speaking to you politely or, you know, expressing themselves in a politically correct way. Because that will that's kind of a artistic experience to be speaking in a way that people don't expect that's outside of the norm. But also, all the sides are coming from a place of having had some negative experience or some difficult experience. And I think the more self aware everyone can be in that conversation, the better. Because it gets worse when people don't understand where they're coming from, if they don't understand like, Oh, I'm reacting this way, because I really had a hard time growing up or I'm reacting this way because my child was diagnosed and all I've seen about autism is raised man and I don't know what to do about it for a period understanding where autistic adults are coming from and being willing to listen to those uncomfortable conversations or statements is a really good place to start.
KC 44:09
Well, thank you so much again for being willing to talk to me and Stuart, thank
Kathleen 44:13
you so much.