98: Autism (actually) Speaks with Kaelynn Partlow

Happy Autism Awareness Month! Yes–I know that was in April, but I have ADHD and am easily distracted. I’ve procrastinated for more than a year on doing some really great episodes about autism because I want to do justice to this topic. I’m starting with an amazing TikTokker, Kaelynn Partlow. I’ve followed her for quite a while, but you might know Kaelynn from Netflix’s Love on the Spectrum. Kaelynn shares about autism from her personal experience and her professional work with autistic kids. She was diagnosed at age 10 with autism, dyslexia, dyscalculia, and ADHD. Her background provides a unique perspective on advocacy that is worth our attention. Join us!

Show Highlights:

Specific criteria (from the DSM) for autism—and Kaelynn’s experience with each one
Persistent deficits in social communication and interaction
Restrictive or repeated behavior
Kaelynn’s experience in making and maintaining friendships while growing up and now
Masking: What it is and what it feels like
The nuances of eye contact: not enough or too much?
All autistic behaviors ARE human behaviors.
Stimming from an autistic perspective and a non-autistic perspective
Kaelynn’s special interests, routines, and self-imposed “rules”
Kaelynn’s experience with sensory issues: noises, fabrics, etc.
Kaelynn’s perspective on physical touch (Most autistic people don’t like physical touch.)
Kaelynn’s diagnosis at age 10 (after the assumption that she was genius-level intelligent.)
Autism is NOT an invisible disability!
Kaelynn’s reflection on her childhood and helpful therapies and treatments
Kaelynn’s thoughts on common ADA controversies
Kaelynn’s advice to those who might fear being “labeled” if they pursue testing for themselves or their child
What Kaelynn sees as the biggest misunderstanding about autism today

Resources and Links:

Connect with Kaelynn Partlow: TikTok, Instagram, YouTube, and Facebook

**Look for Kaelynn’s book, Life on the Bridge, to be released this summer!

Connect with KC: Website, TikTok, Instagram, and Facebook

Get KC’s book, How to Keep House While Drowning

We love the sponsors that make this show possible! You can always find all the special deals and codes for all our current sponsors on our website: www.struggl ecare.com/promo-codes.

KC 0:05
Hello, you Sentient Balls of Stardust. Welcome to struggle care. I'm your host, KC Davis. And I want to say Happy Autism Awareness Month. And you might be thinking to yourself, Casey, that wasn't April. Yes, it is. However, I have ADHD. And I started planning for doing some episodes about autism last January of 2023. Thinking, I'll just get it ready for April, and then I didn't, and then I thought, I'll get it ready for next April. And then I still didn't. So welcome to me now talking about autism, I wanted to do it justice. And we're going to start off this string of episodes with a really, really great guest, Kaelynn Partlow, who I know as an amazing TIG talker that I have followed for a long time, you might know her from Netflix's love on the spectrum. Caitlin, thank you so much for being here. Thank you for having me. And we were just chatting before the recording about how I've been excited to talk to you because you're one of those few people that can talk about autism from your own experience. But you also work professionally with autistic kids and with kids that have even higher needs than you do. And I feel like that gives you a really unique perspective, when it comes to kind of at least online discourse about autism.
Kaelynn Partlow 1:15
Yeah, I think a lot of people use their personal experience to advocate which is fantastic. But I've got that added clinical experience. So I'm speaking from my perspective, but my perspective is influenced by the perspective of others. So I think it brings something unique to the table when it comes to advocacy.
KC 1:30
So what inspired me to want to interview you and kind of talk about this is that I have a daughter that is autistic. And I began to see some traits in her when she was as early as you know, a year old, 15 months old. But if you go and google like signs of autism and kids and babies, it'll give you like a pretty like, it's pretty consistent the little list they give you they talk about avoiding eye contact, not liking to be held, you know, spinning arm flapping, well, my kid wasn't doing any of those things. And yet, there was something about the way she was experiencing the world that seems different. And the only reason that I picked up on it is because be through my book, How to keep house while drowning and talking about neuro divergence, and like how to clean house when you have executive functioning issues, I had gathered such a huge audience of autistic people. And then I started following a lot of autistic adults. And when I started to listen to autistic adults talk about how they experienced the world and what it felt like to be autistic. I felt like that gave me a different way of understanding autism than just sort of like the list the pediatrician gives you. And what was interesting is that as my daughter got older, she did start to do some of those things on the list. But some of the first things I experienced about her, I almost like couldn't even verbalize and for a long time, I was the only person in my family that was like advocating for like, Hey, I think that there's some neuro divergence here. And I think it might be autism. And I was like, no, no, no, she makes eye contact. She is really cuddly Is she right? But I don't know how to explain it. It was just that something about the way that autistic adult talked about the way that they experienced the world looked like the way she was experiencing it even that young. And so for that reason, I wanted to bring some of that, like that was such a blessing to me, I wanted to bring that to my audience, and give everyone the experience of hearing that firsthand. And so I want to just, first of all, to thank you for making time and your schedule. And I hope that you know, your experience will be that same kind of level of helpfulness and blessing to kids and parents and adults out there as well. I want to talk about the criteria for autism. And for the listeners who aren't familiar, there is like a very specific list of criteria in the DSM, which is our diagnostics and statistics manual. And I want to kind of go through it and just ask you like how you relate to that, how you experienced that? Or how maybe you would even change it according to how you experience it and even how you maybe see it in some of the kids you work with. So the first one is persistent deficits in social communication and social interaction. So just that statement and of itself, do you feel like that describes you? That's
Kaelynn Partlow 4:06
a tricky one. I feel like yes and no on my evaluation report, which was kind of tough to read, you know, going back as an adult, because I was diagnosed when I was 10. And of course, I couldn't read it at that point. But looking back at it now, they had noted that I did not struggle with expressive or receptive language in the traditional sense in what you might expect, you know, the way that they describe, but I struggled with the pragmatic use of language, how to apply it, the example they gave, which I kind of disagreed with. The example they gave was that I didn't know how to construct an apology. I knew what an apology was. I knew when somebody might apologize. But on their account, I could not construct an apology that sounded appropriate given a hypothetical situation. And so that is one that I don't know about that specific example. But the pragmatic use of language, you know, in terms of it being a deficit is something that does kind of resonate with me just because in my adult life, I get a lot of support that probably kind of hinges on that stroke. With a pragmatic use of language, I need support, answering my own emails, or preparing my thoughts for meetings, just the constructing of the language sometimes, especially when it's a challenging social situation, that can still be kind of a struggle for me.
KC 5:12
So let me ask you this, when I'm somebody who like, I almost can't process anything internally, like, I don't know what I'm feeling until I'm saying it out loud. And there's no transition or difference between what I'm feeling and a verbal expression of what I'm saying or feeling. And like, I have sometimes found that with some of my friends that are on the spectrum, there's this, like, they experience what they want to say, or what they're feeling, but they have a difficult time figuring out what the correct words would be for it. That's like a poor way to explain it. But I just in thinking about my own experience of you know, the words come really quickly. And in fact, I have to put words for that thing to be real to me. Is that your experience, like when you're talking about the pragmatic use of language? Or would you explain that differently than that? Sure,
Kaelynn Partlow 6:04
I think well, and so the other piece of the diagnostic criteria, specifically about language that doesn't particularly fit me or fits me differently, is that I did not have delayed speech, I actually had early speech, I spoke in sentences at length of time of eight months, which was insane. And it was intelligible speech. And it really threw off just about everybody. And I think when I say I struggle with the pragmatic use of language, it's in my head, I'm very smart. But what comes out of my mouth is sometimes not always representative of how I wanted it to come out of my mouth. And so I can make it come out of my mouth, but you probably aren't going to like when it comes out. It's probably going to be rude. Yeah. But if I had given the chance to think about it, or to type it, you know, I can make it sound a lot more palatable, whatever it is, especially if it's in a conflict scenario. That
KC 6:52
makes sense. Okay. Do you personally? Do you have any feelings about the use of the word deficit?
Kaelynn Partlow 6:59
I don't know. I feel like if I had feelings, they wouldn't be strong ones. I think that is sometimes a fitting word. But I also see how sometimes it can be not the most helpful
KC 7:09
word. Yeah, that makes sense. So when you talk about how like, Okay, I fit it in, but I fit it in a different way. If you had to write like a personal criteria, or if like you were the one in charge of writing that criteria, is there like a more accurate way that you would state that if someone were to ask you sort of like, Hey, what are your struggles in social interactions? Or how does your autism show up in the area of social interactions,
Kaelynn Partlow 7:30
just as it pertains to language or socially just in general,
KC 7:34
let's go with social communication specifically.
Kaelynn Partlow 7:37
That's a hard I guess I've never really thought about that. I think if I were just going to answer for myself, personally, I would say I just keep coming back to that words are the pragmatic use of language, I don't have any issues understanding language, I don't have any issues using language. But to use the language that is best reflective of my inner thoughts and feelings that is challenging, especially when the situation is difficult or is novel or is something I'm kind of unsure about.
KC 8:02
That makes sense to me, one of the things that I don't share a ton about my kid, besides the fact that I have a child that's autistic, and I'll share a little bit that I think is appropriately generalized, for the sake of being helpful. And one of the things that I noticed with my daughter is that she, how do I say like, though, it's really the word pragmatic use of language. And what was so funny about so much of her autism report, when it talked about like, all these things, were like, can she do whatever? Can she do eye contact? Can she talk, can she do this, can she, every single one of them was like if she wants to. And when it came to that, it's like, it's not that she can't she's she is verbal, she is speaking, and she doesn't even have a delay anymore. However, her use of language is different than her peers. And what I have found, it's that her use of language is like overly pragmatic. So whereas like my other daughter, at this age, would be talking more about thoughts and feelings and processes, hers is a little more pragmatic, based about kind of concretely what's happening in front of us and things like that. And I know that she's still having the same level of internal experiences, because I just know her really well. But she's not at this point, you know, using language to describe those inner experiences as much, which just kind of reminded me a little bit of what you were talking about. And I do think that sometimes people have a very black and white view of like, Oh, it's a speech delay, or like, oh, it means they can't talk. And there's so many different ways that like an autistic brain could be processing and using verbal language. Okay, so some of the examples, let's talk about some of the examples that the DSM gives. And sometimes examples are helpful. And then sometimes they're not helpful because you read it, you're like, wow, none of that applies, but there's just like, the trouble with the back end flow, like have conversations, trouble with body language or nonverbal communications. Do you experience any of those?
Kaelynn Partlow 9:57
I think I did more. So when I was younger, my mom said I remember this a little bit that a lot of my conversations with her like I was capable of a reciprocal kind of back and forth with her where, you know, she'd asked the question, I'd ask the question, and we kind of have this back and forth. But a lot of times I spent kind of lecturing her about whatever it is that I was interested in, you know, it'd be the Lion King or birdwatching or dog shows, and really, you know, her thoughts, opinions or beliefs did not matter to me as much, I was just really excited to share mine. And so I think that's an area that I've definitely improved. Although I will still say that I sometimes do not value other people's thoughts and opinions on different subjects, if I have to tell you what it is that I'm talking about, I don't care what you think about it, because it means you don't know enough to contribute, and I really don't care for your opinion. So there is that.
KC 10:47
You know, it's funny, like, I think people would hear that, and it would seem like harsh, or it would seem like, oh, it's unfeeling. But at the same time, like there's aspects of that, that I almost relate to, for different reasons. I mean, I am kind of like a verbose ADHD person. And when I'm excited about something, I will talk with someone about it in such a way that the people around me think that I'm arguing or debating or being, like, contentious, and I'm like, and so if I get with someone else, who's kind of like that, we'll be in a petty, you know, a book club, and we'll be disagreeing and we'll be like going out and people like, Let's not fight guys. And we'd be like, we're not fighting. This is fun. But that being said, that sometimes I would do that with someone who like, that wasn't their personality. And so they'd be like, Why are you like bullying me? Like, why are you being so aggressive about this? And my point to all of that is that sometimes the way that communication looked to people was like, different than the way I was experiencing it, because, yes, I'm being like, contentious, but I experienced that as very connecting. Like, I'm enjoying that person right now. And I'm enjoying them. And I wonder if it's same for you, like when you say, like, you know, when I'm talking about something I really enjoy at someone, and it's a little more of a lecture, and I don't really care, like what they think about it. Is that because you don't care about that person, or is it because that just feels so connecting, you don't need their input for that like moment of relationship,
Kaelynn Partlow 12:11
I think the second one, and I've definitely kind of grown out of that move past that is the right way to put it, but just grown to see the value in other people's perspectives. And kind of like what you were saying, I like to be I like to express opinions passionately. And I also have this really kind of terrible quality that I also really like to argue. And so I have a colleague who also enjoys arguing, and we almost had the two of us almost had to go to an HR meeting, because we were screaming at each other across the table. But we were both just so passionate about what we were talking about. We both enjoy arguing, we were having a phenomenal time. Nobody was like actually screaming or actually, I mean, we were screaming, but nobody was upset. And to us it wasn't inappropriate, because, you know, we're just sharing our passions about a subject that happened to be on two opposite sides. And I was having a great time. I
KC 12:57
don't know if you experienced this, but I feel like it was a long journey for me to get to a place where you know, I can only relate from having like ADHD, but where like parts of what is neurodivergent about me were just became like, morally neutral in my head. Like as a child, they were very much kind of demonized, like, oh, you interrupt people because you're arrogant. You don't listen to people because you're self centered, right? And so I had a lot of shame about aspects of my personality that really kind of stemmed from ADHD. And then I swung to the other side, right in response, where it's like, no, these are my superpowers, I get to interrupt anytime I want. If you don't like when I interrupt, you're being ablest. Right, like you go through that like kind of reclaiming and respondents to kind of how you were treated younger. And then I feel like I kind of evened out a little bit to actually it's just like a neutral thing about me that I communicate this way. And because it's neutral, there's nothing wrong with it or shameful about it. And it can impact people in a way that hurts their feelings. And yeah, two things can be true, right. And I can navigate that, while like owning it and enjoying it. And like you said, like actually having to stretch myself to learn about how other people experience it and being more aware of it. And having that balance of I don't have to totally pretend to be someone else and feel ashamed. And I don't have to like bulldoze over people in our social interactions. And I feel like I hear that kind of in your is that your experience too?
Kaelynn Partlow 14:22
Yeah, absolutely. Just because, you know, like, self acceptance is fantastic. But I think it can certainly be taken to an egotistical standpoint, if I'm being honest. And I really try and be aware of that in myself that, you know, we can accept ourselves for the neurodivergent traits that we have. But at the same time, if we value relationships with other people, we've got to show them that we value that and sometimes our way of communicating value and their way of receiving value can be completely opposite. And so working with them to kind of find a happy medium where I can, you know, have value in our interactions. But so can you is the only way for those interactions to be able to continue in a meaningful way
KC 14:58
which is funny because one of the Other examples of social difficulty is difficulty making and maintaining friendships. Which, you know, we're kind of talking about getting to a place with your own neurodivergent, where it's, it would be easier to make and maintain friendships. So I sometimes wonder like, how much of that criteria is really something inherent about autism, and how much of it is more about growing and being young and, you know, having to learn how to live in this world with the brain that you have, how what was your experience in like making and maintaining friendships growing up,
Kaelynn Partlow 15:38
I still don't really have very many friends I have, I'm very close with my roommate. And I have a couple of friends at work. And by a couple, I mean, like one, maybe two. And it's always really been that way. For me, when I was younger, you know, I was socially motivated, I wanted to interact with my peers, and very, very little, you know, there's playgroups or their school, or there's things where it doesn't matter how weird you are, they have to take you if your parents are gonna pay for you to be there. And, you know, I was weird enough to that it was noticed, but not weird enough that I was bullied necessarily. I was just a little bit different. And I had friendships, but they always seemed to fizzle out. And that's still true today that I don't really have very many friends. I think I would be a good friend to somebody. But I'm not particularly friendly in terms of those like, initial interactions. And I think that's part of what holds me back from making friends.
KC 16:30
Do you wish you had more friends? Yes, I am profoundly
Kaelynn Partlow 16:33
lonely, which a lot of people would not realize because of my social media stuff. And you can hang out with anybody you want. But it's those parasocial relationships. You know, everybody wants something from me. So it's not like you could just hang out with one of your followers. That is not even remotely an option. And I can't stand. I mean, it sounds awful. And I know that they just don't understand. But it really bothers me when they think that that's a viable options. Oh, just hang out with me. I live locally to you, we could meet in public, I promise. I'm not a serial killer. I got one of those emails last night, I live in your same area. And I promise I'm not a serial killer. And like, that's great. And probably you aren't a serial killer, statistically speaking, but like, you got to understand that that is not a viable option. This is not an even I know nothing about you, and you know everything about me. And on top of that, you probably want something from me, which is fine in a professional capacity, but I just want a friend. And it's been even harder to find those relationships now that I'm internet famous, basically, yeah,
KC 17:30
I get a lot of those messages to have like, oh, I live locally, we can be mom friends. And it's like, it's so weird. We couldn't. There's like, there's literally one person I met who recognized me. And we started talking and actually became good friends. But like, she also like outside of the initial like, Hey, I think I'll recognize you like, there wasn't this like, and you're so wonderful. And you're so great. And it's like, okay, plus, I wonder also, if somebody wants to be your friend in response to hearing you talk about being lonely, if there's like a weird ik feeling to it of like,
Kaelynn Partlow 18:02
Oh, it's a pity friendship. Yeah. Or like I can
KC 18:05
save you or it's kind of like a little infantilizing. Right? Yeah. Okay. So moving on to this idea of masking. Masking refers to you know, modulating your speech and your facial expressions and your behavior in social situations away from maybe what you would naturally intuitively do and into sort of what you believe to be the socially correct way of behaving? Do you engage in masking? And if you do, can you talk to us about what it feels like?
Kaelynn Partlow 18:35
I wrote some notes for this hold on. And maybe there's they're not going to be the most thought out notes. But I don't even know if that makes sense. What if I just read to you what I wrote, and then maybe we expand on it, or you tell me that doesn't make any sense? Because it might not make any sense. But so I was looking over your questions yesterday. And, you know, I was sitting there thinking about the masking one and so apparently what I wrote yesterday was masking feels like trying to exercise when you really have to poop but there's no bathroom. you're exerting yourself in many cases for your own best interest long term. And so you must constantly be monitoring your own progress and behavior as well as your environment if you want to meet your goal, which is in the case of masking to be seen as neurotypical but you're doing all this when you really have to poop. It's uncomfortable, but not excruciating. Sometimes you can hold it for longer, and it's not difficult. Other times you really gotta go masking is much like holding it when you need to go to the bathroom and requires a certain amount of inhibition.
KC 19:30
Hmm. So okay, this is interesting, because this morning, I was like rushing to get my kid out the door to go to school, but I really had to pee. And I was like, I can just hold it. And what I take from that metaphor is that like, which is funny also because of my ADHD, I'm often ignoring that I have to go to the bathroom because I'm like an hyperfocus. But it becomes this like, low grade awareness in the back of my head that like takes up space in my brain, and therefore takes like, not necessarily like active attention, but like passive energy and management and awareness to just like be aware that that need is like pressing, no matter what I'm doing. So that's what I hear. And that metaphor, is that what you were going for? Is there a slightly different aspect of it that feels true to you? I
Kaelynn Partlow 20:20
think so I think it's that and that, that you like, I guess it's varying degrees. Like sometimes it's not always the worst, most terrible thing ever. Like, sometimes you kind of gotta go a little bit or like you could go, but you don't really, really have to, and then other times, you are about to explode, and you need the toilet right now. And you just can't make it any longer. And you know, it's not always this terrible, horrible thing, every single time that it occurs, it's not always the same degree of terrible horribleness.
KC 20:46
Yeah. And so when you are masking, so that's kind of what it feels like, what are you like, literally do when you're masking,
Kaelynn Partlow 20:53
I think, and I mean, I've seen enough B roll video of myself to like, know that I'm not particularly good at it. And I feel like I'm somebody with a fair amount of social skills. And I also feel like if I'm not particularly good at it, when I think that I am I wondering if that might be true for a lot of other people as well, where they say, you know, I'm working so hard to mask and, you know, it's exhausting, which, you know, I believe that that is true. But I also believe that our version of masking as autistic people is like not, we're really not very good at it. We like to think that we are and like, Oh, we're pretending to be normal, whatever. And people believe that they don't, they don't believe that you're normal. You don't look normal, you don't act normal, you're trying really hard. But I've just seen enough like B roll footage of myself that it has been taken by other people that I'm just like, that's what I look like when I walk around, like, Why do I walk like Bigfoot? I thought I was like, walking like a normal person. I was like, I remember walking here. And I was intentionally trying to not do that. And here I am doing that. So you think you're doing one thing, but I promise it looks different, which is kinda like, disappointing. If you think about it.
KC 21:54
Yeah. It reminds me of like, one time, I was talking on my tic tock channel about eye contact. And I was thinking about how a lot of autistic people have a different pattern of eye contact than neurotypical people do. And I would hear from people like, you know, there's almost like two experiences when it comes to eye contact of when I interact with an autistic person. And not every autistic person has like differences in eye contact, but a lot do. And so sometimes when I'm interacting with someone who's autistic, and this is often how I like clock autistic people, is that you see that they're not making as much eye contact with you, as you would expect. But the other way that I often will clock autistic people is that they're making more eye contact than you otherwise expect. There's lots of like, direct staring and into your soul, right? And one time somebody asked on my channel, like, you know, I'm what, how am I doing it wrong, like I'm looking into their eyes. And I realized that, when because I'm someone that makes intuitive eye contact in the way that like neurotypical people do. But when I'm doing that, I'm not actually looking like into your cornea. Like I'm glancing into one eye for a second. And then I'm glancing like down at your mouth and up at your nose and into the other eye, and then onto your forehead and into the other eye, and then down at your chin. And like I started kind of paying attention to like, where my eyes were literally like flitting about someone's face, and that I was taking in someone's face as like one whole big unit, like I'm looking at your face. I don't experience that as looking at parts of your face. But it's almost like the computer chip in my brain takes those different visual data points, and then creates one image and then that's what I see. And I realized that thinking about that, like, top down, bottom up thinking, and because one of the things that I had read is that a lot of autistic people have that. Now I can't remember which ones which, but the opposite one, right? And that they they've actually done studies about where autistic people versus non autistic people look on the face and done like little maps, and they're like, completely different. Right? It's interesting, right? And so what I realized is that a lot of the people that I knew that were autistic, when they heard, Hey, make eye contact, they took it really literally, and, you know, as someone who, like I didn't even if you said like, Well, why wouldn't you explain like, Well, I wouldn't even have known to explain, like I, you know, I wouldn't have even known to say don't actually stare in someone's eyes. And I'm sorry, this is such a convoluted explanation right now. But and so there's almost this like overcorrection where someone would kind of like stared deeply and somebody asked me like, why is it people think that I'm like, unsettling, or I'm intense, or you know, and I'm like, Well, it's because typically speaking, when non autistic people make eye contact, they're like, kind of looking in several different places. Unless we are trying to like communicate something romantic, or something like intense And then I got this comment in all capital letters from this woman that said, Is this why everyone always thinks I'm flirting with them? Oh, my God. And I was like, yes, yes. This is why, and I'm so sorry. I forgot why I even started that conversation. But oh, it was when you were saying like, sometimes you don't think you do it? Well, is that I was like, that was what came up was this idea of like, okay, I try so hard to make eye contact, I think about it, I'm paying attention. I'm not staring off, you know, to the left or the right. But it's like that sometimes that intensity of trying to mask even reads as not blended as autistic. Right,
Kaelynn Partlow 25:35
right. I've worked with learners who, you know, very, very young children who, from a young age naturally make very intense eye contact, but were diagnosed autistic. And so sometimes it's not even necessarily an attempt to mask but that's just their natural way of interacting, which is kind of unexpected. When we think about autism. You know, the stereotype is that people struggle with eye contact, and most you know, do I would say, but there are certainly several people who make very, very intense eye contact, whether that be you know, in an attempt to mask or, you know, maybe that is just their natural style of interacting with others. Yeah,
KC 26:10
and I always think like, it seems like the difference isn't, because I've heard people say, like, oh, eye contact is intuitive to people that are not autistic, but it's just not intuitive to autistic people. And it seems to me like that's not really accurate. It just seems like it's a different intuition. Like, if you're not masking, are you thinking about where your eyes are? Or they're just like going where they want to go?
Kaelynn Partlow 26:30
There just go in places? No, they're not going where people might expect them to, but they are going places. Right?
KC 26:35
And I feel like I mean, like, that's my experience. Like, I don't have to think about where my eyes are going. But it just so it's just like, it's just a different, like, my intuitive, like, pattern of looking is just different than your intuitive pattern of looking, but it's still intuitive. Okay, so I kind of you kind of answered this question, but I'll we'll revisit it. But there's this stereotype that autistic people don't want relationships, or that they don't need them. And I feel like you kind of already answered that that wasn't true for you. And you talked about being lonely. And I'll never forget, like listening to an autistic person say that. People always assumed that they wanted to be alone, that autistic people like to be alone and don't like to be around others. And they were sharing their own experience. And they said, I never wanted to be alone. I just it became really obvious to me at an early age that I was like, people didn't know what to do with me. And I had such difficulty. And I felt like I was a burden. And so I just learned it was easier to be alone.
Kaelynn Partlow 27:30
It's easier, but it's not better. But it is easy. Okay, so
KC 27:33
let's move to the next diagnostic category, which is restricted, repetitive patterns of behavior, interest in activities. This is the one that I think people are as familiar with when it comes to autism, like we think about sort of like maybe some social differences and maybe speaking differences. But when you read the phrase restricted, repetitive patterns of behavior, interest or activities, do you feel like that describes you?
Kaelynn Partlow 27:56
Yes, but only because I've got a pretty in depth knowledge of what that means and what that can look like for other people. But I think when most people read that, you know, if they've got a just basic understanding of autism, they think, well, that means stimming. And that means routines. And that's it. That's all they think. And that's all it but it's so much more than that. And when you kind of really dig deep into it, I think more people will find that they do probably relate to those things, but because of their limited understanding, they might say that they don't. Yeah,
KC 28:24
so for the audience, I want to give like some definitions, right. So when we say stemming STEM is like, quote, is short handed for like, basically self stimulatory behavior. So this would be things that people might think of, like flapping hands rocking, those are like, sort of classic stems. And then but under this category of restrictive, repetitive patterns of behavior, yes, we also have, as you talked about, like routines where like, maybe things need to be the same, but also special interests fall under restricted, repetitive patterns of behavior. So let's start with STEM. So do you have any, by the way?
Kaelynn Partlow 29:02
Yeah, I think I say that I've got like a set of stems that are what I might call work appropriate, you know, ones that I would do that are kind of covert, you wouldn't really notice it. Unless you're really looking and even then you might not. And then I've got some that are more, you know, for at home or for around people who I'm very familiar with, or for ones, you know, where I'm completely by myself. Yeah.
KC 29:23
And are they the same as when you were young? Like, Have you always had the same ones? Or have they changed throughout your life?
Kaelynn Partlow 29:28
They've definitely changed. When I was really little, there was a lot of hand flapping. And then when I was an adolescent, there was a lot of pacing, and it's just kind of evolved into just a larger variety, I would say,
KC 29:39
yeah, what does it feel like when you stem
Kaelynn Partlow 29:42
sometimes, a lot of times it's out of boredom, or to kind of release an emotion so to inhibit it can sometimes feel a little bit sweaty or kind of like nothing, just depending, you know, kind of like the half to poop analogy. Sometimes you really gotta go and sometimes you can cold it and it's not a big deal. It's a lot of that and I don't really experience Strong urges to stem especially when I'm engaged in an activity or like a social activity when I'm around other people, I don't really feel the need to do it very often. But that said, I do feel the need on occasion.
KC 30:10
And I mean, when we talk about like, stimming, like, there is, I mean, all autistic behavior is human behavior, right? Like, to an extent that because everyone's like, Well, I kind of relate to that, well, I kind of like me, and you hear people that like, well, maybe I'm a little and it's like, no, like, these are all human behaviors. But when they're experienced, at a certain intensity, or a certain frequency, in a constellation of other traits, right, that's when we're looking at like, a neuro type different than what most people experience. So like, everyone can probably relate to, oh, I shake my knee, you know, or I pace or like, we all probably engage in some sort of stimming behavior, what would you say is the difference between like, the autistic experience of stemming for you, or even for some of the kids, you know, versus like a non autistic experience of stemming, I've
Kaelynn Partlow 31:05
said, you know, kind of like, what you have just said, just the difference is intensity quantity. And I like to joke that the difference, there's a difference in quality as well, mine is going to be better than yours. So I think those would be just the defining features, just as it is more intense, it is more frequent, a lot of times it's going to be more overt. And it's not going to be things that are considered what you might typically think of as socially acceptable, it's going to be a little bit more intense than just bouncing your knee or twirling your hair or biting your fingernails, it's going to be something that's maybe a little bit unexpected, there's going to be maybe finger flicking or playing in saliva. I mean, there's so many different options, really. And they all have varying levels of social acceptance, unfortunately. So
KC 31:45
you mentioned a couple of kind of like experiential reasons about like, maybe releasing an emotion or boredom, but you touched there on like playing in saliva. I feel like a lot of them are also like sensory experiences, like being I know sometimes when you feel overstimulated, sometimes that makes one to stem but also being under stimulated. There's no that's like craving that sensory experience. My daughter is actually extremely cuddly and touchy. It which was kind of like one of my cue offs, I realized that, you know, there's something about this that is like regulating to her in a way that feels Lala terribly different than the way that like, just Oh, yeah, every kid regulates with a hug. And I've also noticed, like, Do you think there's a difference between like, there's like stems, there's like, this is kind of funny, but like, I call them like, limb stems, right? So finger flicking or arm flapping, or, you know, shaking your leg or even pacing, but then they're the type of stems that seem to have something, at least when I think about my daughter, they seem to specifically have something to do with like moving her head and her brain because it's like soothing, or it's helpful. And the way that I think about it is like, I feel like anyone, well, maybe I don't know if I'm about to discover something about myself. But like, everyone knows that feeling of being in a hammock and rocking. And it's like, it's like this really soothing feeling literally in your head. Like literally in your brain, it feels like your brain is in like a warm bowl of water. And it's just like, slightly sloshing in the spirit. Which makes sense, because I feel like that's like this primal thing from when we were babies. And there's a reason that babies we rock them back and forth, or we bounce them lightly, because there's something about that brain movement that's very calming. And I experienced that even as an adult, like swinging in a hammock. But that being said, I don't feel like a drive to go swing in a hammock, right? Like, that's not like a tool that I need to calm down. It's just like a thing that feels good. So I've noticed that sometimes with stems, like that's what it is. So it's like the need to jump or to spin or to rock. I don't know if you've noticed that like in some of the kids that they work with, or in yourself that like, it seems like so I just joke, like, Oh, those are limb stems. And then there's like the brain, the whole head brain movement? Yeah, I don't know. Do you see that with kids?
Kaelynn Partlow 34:00
Sometimes I think a lot of times online, I've seen people talk about stimming in the way that you know, stimming is this wonderful Self Help tool. And if you're having a meltdown, it's okay go stim about it, that'll fix it. And I've never on a personal or on a professional level experience, that just free access to being able to stim in a judgment free place is going to fix all your problems, because I have access to that and so to my clients, and that, unfortunately, has not been enough to stop meltdowns or even prevent meltdowns in myself and the people I work with, which kind of sucks because I think we like to talk about online, you know, if the world were only more accepting than X, Y, and Z would happen and I work in the very most accepting tiny little bubble in, you know, a very conservative area and I've got this tiny little bubble of accepting people were stereotypy and all of that is welcomed, and even then, sometimes it is not enough to regulate ourselves. stimming is a really helpful tool and I really like how you just described it. but it's not always the magical self help, you know, cure all your problems that people sometimes think that it is. And maybe it is for some people, but those people just aren't me. They are the people that I work with. Yeah.
KC 35:13
Well, I have two thoughts to that. One is as a parent, that is just such a relief to me, because I do think sometimes there's this there can be this messaging from the Autistic community. And I understand why and, and where some of it comes from is that like, if people would just be more accepting, I wouldn't be in so much distress. And I totally, sometimes that's 100% True. But as a parent, it can be really difficult to watch your kid be in distress and have that message of like, okay, I must be screwing up. Like, if I could have been more, if I could have just figured it out, if I could have just right, like somehow that I could have been the perfect accommodating parent and prevented this meltdown or this distress or this frustration. And so it's, it's actually really, I think, beneficial to say that, and for people to hear that. And I would imagine that even if a person was autistic hearing that like, this isn't some failure of them to manage their autism. Yeah. And I also think that like, that doesn't even touch this issue of sometimes, like, there are people whose self stimulating behavior is inherently dangerous, whether we're talking about running into the street, which is sometimes just the self stem of running, whether we're talking about banging their head on the wall or chewing on their fingers or things like that. I mean, I'm sure that you know, having worked with kids and knowing people that it's not as simple as Oh, it's just this wonderful free expression. Let's let it
Kaelynn Partlow 36:35
rip. Yeah, there are definitely stems that can be dangerous or unsanitary. You know, playing with feces is not a sanitary way to engage in sensory seeking behavior. And that does need to be soft. Now, when I say stopped, I don't mean punished, I mean, replaced, you know, we can play and shaving cream, we can play with food substances, but we cannot play in the bathroom with our hands. And so the end that's present in a lot of people, that's how a lot of people experience autism. And and unfortunately, those are the individuals who can't describe their experiences on tick tock, and on Instagram and on Facebook. And so stimming has just got this reputation for being this magical self regulating tool, and it is helpful, but it is not magical. It does not fix everything. It can maybe help you calm down a little bit, but it's not going to fix your issue. At least not for me. Yeah.
KC 37:25
And I like that you talk about like, if you suppress it. So it's like it's both and right, like, it's not some magical if we could all just Do you know, you could all just do the same thing would you just regulate perfectly. And it's also true that like, you know, stopping a STEM is not necessarily stopping whatever the distress, the internal distress is, or just the internal need. That's like, you don't want to suppress it, but also, you may want to replace it. And also, you know, you want to have a level of acceptance, but also like a reasonable understanding about what its function and limitations are
Kaelynn Partlow 37:57
when the other thing we like to talk about online is how, you know, I don't have social deficits, I don't have problems with social skills, I get along perfectly wonderful with autistic people it's neurotypical people I don't get along with and that has also not been my experience, I experienced far more conflict with autistic adults than I do with neurotypical adults. And working in a school that only accepts autistic students. Let me tell you, there is a lot of conflict Across Ages and across ability levels. And, you know, you might think looking online that everybody's stems would be accepted by each other and that it is not the therapists, the neurotypical therapists who ever have a problem with stimming we all recognize that it is self regulation, it is frequently the other autistic students who say, Stop that, what are you doing? That's so weird, you're being annoying with the, you know, the other child STEM is just different than their own. And so we act like this is just like some big, you know, ableist thing that all neurotypical people do, but autistic people do it.
KC 38:56
Yeah. So let's talk about special interests. This is what we would say like restricted under the that thing. Do you have special interests?
Kaelynn Partlow 39:03
Yeah, I always have, I would say right now, you know, autism is a big one. The treatment of autism and all that could be possibly related to that is the big one philosophy as it relates to autism and the treatment of autism. And if I weren't so damn dyslexic, I think I would really like etymology to. Okay.
KC 39:22
And then let's talk about, let's see, oh, yeah, routines is the other one. I think there's this kind of stereotype of you think about someone that maybe needs to do something exactly the same every time. Is that how you experience things? Or how would you experience anything around like maybe like restricted patterns, or routines or any of those kinds of things.
Kaelynn Partlow 39:40
I've definitely got some like routines that I like to stick to, but mostly those are surrounding like morning and bedtime routines, and mostly just on workdays and I can be a little bit more flexible on the weekends. But for me, that manifests in a lot of what I call rules, and they're self made self inflicted self imposed rules, although I joke lots of times that I don't make the rules. I just follow the rules, although I am the one who makes the rules. And sometimes they make sense. And they're for a logical reason. And other times, maybe not so much depending on who you ask. And so for me that, you know, flexibility kind of comes in or in flexibility rather when, you know, there are situations where I am asked to maybe bend on some of those rules, and I can't because I haven't not because I don't want to, but I can't do that. Because I've never done that, therefore, I cannot.
KC 40:22
And can you give me an example of like one of your rules? Yeah, I
Kaelynn Partlow 40:26
think I wrote some of them down, because there's a lot and I don't think about them until they come up. So I won't eat certain foods in certain locations, or on certain days, I refuse to work from home not because I can't work from home, but because I don't work from home. So you know, I can't I have Bluetooth headphones that I could connect to my laptop into my iPad, but I've only ever connected them to my iPhone. So they will only ever then be connected to the iPhone. There's some of them are weirder than others. Like, you know, I travel a lot. And every time I get picked up from the airport, we go home. But there was one day that my roommate really wanted to stop at Wendy's. And I could not handle that I had to be dropped off at home because we've never driven from the airport to anywhere other than home. And so I had to be driven home not because I didn't want Wendy's I did. I did want her to get me something from Wendy's, but I did not want to be in the car or when it was driving to Wendy's from there.
KC 41:16
You know, what's interesting about you describing that experience is I think of two things I think of like, okay, we have a stereotypical idea that it's about routine. But a lot of what I'm hearing you talk about is it seems like sometimes the heart of the issue is actually prediction. And the reason I say that is because one of the other things with my daughter is like she never was super rigid about routine. But we would notice a couple things we would notice we call them her loops. When she would play it wasn't so repetitive that anybody else noticed it. Like if you were just watching her play, it wasn't like oh in out in I'm or I'm doing back forth. I'm not just like she didn't like sit and spin the wheels of a car. But if you watched her for 10 minutes, you would notice that we're talking the dolly in, we're kissing the dolly goodnight, we're running down the hallway, doing three spins, coming to mom and going Hi, mom going over to the easel and scribbling. And then we're going to the dolly and we're tucking the dolly in. And then we're running down the hallway, we're doing a spin. And it wasn't like she did that all day. It wasn't even like she did it every day. But it was frequent enough that I would notice. And we would just sort of say like, Oh, she's on our loops, right. And it wasn't until we got with an assessor that was like, yeah, that's an example of like, repetitive, repetitive. But the other thing that happened, because I don't have a kid that like has to have everything be the same. But when she was younger, when my other daughter was learning to potty train, we would have these experiences where like, let's say we stopped at IHOP. And we ate breakfast. And then we were after breakfast, we were going to go to the zoo, and we'd be going to the car and we'd be like almost to the car or maybe even already in the car. And then my older would be like, I have to go the bathroom. I was like, Okay, well, let's now we gotta get out of the car, we got to go back into the iPad, go to the bathroom. And when I would tell her like sometimes she was younger, and I wouldn't tell her because I just wouldn't I just like, No, you don't. I mean, we're getting out now. And she would get really upset. I mean, wouldn't get out of the car, she would, you know, sit in the road had you had to pick her up and drag her kicking and screaming back in. And no matter how many times I said, we're just going inside to potty. We're just going inside. It's like she couldn't process
Kaelynn Partlow 43:20
that. Right. That's not how this normally goes.
KC 43:23
Yeah, that that's not how this normally goes. And sometimes it wasn't even about like how it normally goes. It was like that's not how I had this setup in my head. Like there was an order of events. And those events are not happening. And I noticed that because she was the littler kid when they're babies, you're so used to just like take it in places and moving on places. And you know, and I hadn't yet caught up to the fact that like, if I don't explain to her first, even though she wasn't speaking much, there's that misconception about if they don't speak you, like mistakenly think that the level of verbal verbal illness is related to like level of understanding or like comprehension or thinking, right? If I don't explain first, like before the change happen very clearly, we are going to the zoo, but we need to go inside to go to the bathroom. And not that that would always work. But there was a lot less frustration resistance than me like making everyone start moving, waiting until she was upset and then trying to explain. It's like I don't understand why you're still upset. If I've explained to you, you're getting the thing you want. And I think that's an example of sometimes what parents will be engaging with, but because it doesn't fit like a stereotypical, you know, repetitive behavior. We don't recognize it as what it is or we recognize it as Oh, it's willfulness or it's a kid that just you know, won't cooperate. And like that's sometimes I think, a hard space for autistic kids to be where it's like the behavior isn't so stereotypical that it's immediately recognizable as neuro divergence, but it's different enough that it causes friction, and so people respond to it as if Maybe it's a behavioral problem anyways. Okay, so and then the other thing that sort of comes under this umbrella of restrictive repetitive behavior are sensory issues. I don't think people realize that sensory issues falls under this umbrella of the criteria. And so, you know, do you have sensory issues? And can you share some of them with us?
Kaelynn Partlow 45:20
Sure, I am very sensitive to sound, although it's like, it's not all the sounds you would think. So like screaming kids doesn't particularly bother me, especially at work just because like, usually, if someone is very upset, and they're screaming, or they're crying, especially if it's somebody I'm working with, or somebody around, like, I figured out, you know, what was the trigger for this? You know, why are they screaming? How can I help them to, you know, regulate themselves and kind of return back to that baseline of calm, and so I can kind of predict what started it and how to make it stop and when it might stop. And so that doesn't bother me, but like screaming kids in public that bothers me, screaming babies that bothers me. Um, that kinda like level of unpredictability attached to a distressing noise can make it that much worse, or like the fire alarm, you know, when we do fire drills, that sucks, and it's loud, but like, you know, it's coming. And you know, as soon as you get outside, it's gonna stop. But like, my roommates, snoring, there's no stopping that, that's just gonna suck forever, or like somebody's random baby crying, that's gonna just suck forever live music, that's gonna suck for a really long time, too. And so that kind of compounds that that kind of like what we were just talking about that predictability, it just kind of makes those sensory issues worse. And then the other one that I deal with quite a lot is just an overall sensitivity to clothing. I really hate polyester and how it's, you know, staticky, and it's clingy. And so my mom will, you know, say, Well, why don't you wear this, or we should go shopping and get you one of these, you know, because so and so wore this, and it looks so cute, and it would look so cute on you. And I hate that idea. Because probably it's itchy, and it's terrible. And so my clothing options are pretty limited by my sensory issues, unfortunately.
KC 46:57
But what does it feel like when you have to be submitted to one of those sensory experiences,
Kaelynn Partlow 47:03
it depends on which one I would say in terms of noise, I typically describe that as feeling very sharp, in a really uncomfortable and unpleasant kind of brain way. Regardless of how high pitch it has nothing to do with like pitch of it necessarily. It's just sharp and spiky in my brain. And in terms of clothing, I would, you know, probably attribute similar characteristics that it feels sharp. And that's not something that you can kind of ignore, your brain can't just be like, oh, you know, it's a little there's a scratchy tag or you know, that the lace on the sleeves that's kind of bothering me, or the elastic on the sleeve that's kind of bothering me, but it's not hurting me. And so I'm just gonna continue on with what I'm doing. That doesn't happen. It's a persistent, it's like, you know, when you get a text in your phone, like buzzes, it's that, but it's over and over and over, and it does not stop. So you try to get something done while your phone is buzzing. You can't. And that's what a lot of people don't understand.
KC 47:51
Yeah, like, what would you say is like the qualitative difference between like, if somebody were like, well, you know, nobody likes loud noises, or like, oh, I don't like certain feelings, but like, what is it about, like, your autistic experience of like a sensory aversion that you would say is like qualitatively different than maybe what a non autistic person would experience as if they were to hear a bothersome noise or a distracting noise or an overwhelming noise. One way
Kaelynn Partlow 48:18
I like to describe it to people is that it's not necessarily that I have better hearing than you do, you know, been to the doctor several times, I have a normal amount of hearing. But it's not that it's that my brain interprets the sound as pain. So it's not that I'm hearing it better than you. It's that the way it's being processed is what's really kind of incorrect. And it's being signaled as pain rather than just stimuli itself. It's not neutral. It's,
KC 48:42
that's really insightful to me, because, you know, I get overwhelmed by sensory input, especially sound and but my experience of being overwhelmed from a sensory sound perspective, is the feeling of overwhelm. It's like the feeling of stress, and the feeling of like, kind of like feeling like bottled up and about to pop, but the pop will be me yelling, or me kind of like being snapping at someone. But I would never say that the experience is pain. I would only say that it's stress, or it's overwhelmed, or it's like too much from an emotional standpoint, if that makes sense. Yeah,
Kaelynn Partlow 49:21
that makes sense. I would say I experienced that sometimes. It just depends on what it is.
KC 49:26
So what about physical touch? Like are you someone that likes or dislikes physical touch,
Kaelynn Partlow 49:30
I generally dislike it as a baby, I did not want to be held, I did not want to be hugged. I did not want to be kissed I was that, you know, the reason they made the autism checklist is like that, I guess I don't know. And, you know, as an adult who works with kids who maybe don't understand social boundaries, or are still learning social boundaries, there's going to be touch and there's going to be unexpected touch. And you know, we can work on social boundaries, and we can work on understanding other people's differing preferences, but that's not an immediate thing. And so It's something that I've kind of grown to tolerate. And there are certain clients that I'm just not a good match with those who need high rates of physical sensory input. You know, I can tolerate it for, you know, a session or two, but long term, it's not going to be a good fit.
KC 50:14
Yeah. What does it feel like? When you talk about like, I don't like physical touch? What how do you experience that discomfort?
Kaelynn Partlow 50:20
I guess I haven't thought about it. I think with other adults, you know, how people say online, where it's like, oh, it gives me the IQ, I would say it gives me the IQ in a very literal sense in like a crawl out of your skin type of sense. Yeah, like, kind of like a repulsion where it's just like, really uncomfortable. But I wouldn't say that that's always the case. You know, I don't mind hugging my mom, I don't mind, you know, playfully holding hands with my friend or, you know, very quick, silly types of interaction like that. It's just the prolonged, I guess, or repeated physical interactions that I'm not particularly fond of. Okay,
KC 50:57
so here's some other questions. That's kind of like the end of my questions about the diagnostic criteria. And then I want to just ask some other questions about your childhood and getting diagnosed. And so what was it that led your family to seek out an assessment for you?
Kaelynn Partlow 51:10
You said, You were 10? Yeah, I was 10. It's really kind of like, I didn't know this part until they told me fairly recently, apparently, when I was very, very young, like toddler infant stage, they thought I was a genius. And so they took me to get tested there, because my expressive language was just so unusual. I had an advanced vocabulary, my speech was intelligible, it was complete sentences. It was very thoughtful, it was very insightful for, you know, being as young as I was. And so they were seeking to get me tested for some kind of genius IQ. And they met with the school when it was time for kindergarten. And they said, Hey, this kids a genius, you know, we don't think kindergarten is appropriate, we'd like you to move her up in this school said, you know, we'll try kindergarten, and we'll see how it goes. And it went terribly, because I might be intelligent. But I'm also I've got a lot of learning disabilities, like a really long list of specific learning disabilities, and have been illiterate for probably half my life, which is kind of unfortunate. And so they quickly learned that not only did I not have a genius, IQ, I had learning disabilities. And in the third grade, you know, as time went on, and you still can't really read, that's a problem. And so they kind of pursued some specialized testing. And I got really, really lucky, I really don't think I life would have had the trajectory that it did. My uncle paid for an autism assessment that came with very, very intensive assessments for learning disabilities down in Orlando, we drove down there, and back in 2007. That was a $10,000 evaluation for the course of five days that I spent with every professional you could ever think of. They went to Disney, and I played with a nice ladies. And that's how that and that is, I got my diagnosis.
KC 52:49
It's always interesting to me, like I've thought about my daughter a lot, and how grateful I am for having exposure to autistic adults, because it wasn't until I had my daughter that I realized, like, Oh, God, I see it, I see how someone could fall through the cracks, I see how you could be autistic, and nobody see it or catch it. Or you could think it's this, you could think it's that and whenever people are around my daughter, one of the things that I hear frequently is, she doesn't seem autistic. And sometimes they say it just as a neutral thing. Sometimes people mistakenly think that that's a compliment. Sometimes people are just kind of curious. And one of the things that I've reflected on that I think is interesting is that my daughter only doesn't seem autistic to people that don't have any experience in autism, right. Like, as someone who now knows, a lot of autistic people knows exactly what autism is and what looks like it is so obvious to me. And I just think there's it's an interesting gap in like what the public at large assumes, like they really have this one specific place on the spectrum that they think of when they think of an autistic kid. And yet again, like we said, like there, you if you knew autism, you would not say that.
Kaelynn Partlow 53:58
That's why I take such issue with the statement, you know, or the phrase, invisible disability, there is no such thing as an invisible disability. If you lost your keys, you wouldn't say oh my god, my keys are invisible, you'd say I don't know where my keys are. If you don't know where to look for something, it means you don't know where it is not that it's invisible. And if you don't know where or how to look for autism, it doesn't mean that it isn't there, it means you don't know where to find it.
KC 54:19
And there's this weird thing about operating in that like place where like you have this disability, you have this neuro type, but you're not necessarily like reaching the area of like, overly stereotypical recognizable deficits from moment to moment basis, where it seems like people and institutions simultaneously underestimate her and overestimate her at the same time. So it's like, oh, she doesn't need those supports, but at the same time, it's like, oh, but she's autistic and we shouldn't know if she could do do XYZ and it's like, no, you haven't even met her yet. Like we've had schools say like, oh, we won't take her because of that. And it's like you haven't even met her, you just have an idea of what autism is in your head, and you think you can handle that, but you have no idea or her personal functioning is. Okay, so when you think back to your childhood, are there things that you now recognize were autistic traits that weren't recognized as such at the time?
Kaelynn Partlow 55:24
Yeah, I think we just like maybe didn't have the language for it. So for my special interests, I used to call them obsessions. And I had a really negative self view, for a large portion of elementary school and a large portion of middle school as well, where, you know, I had these academic struggles, but I also had these really, you know, high level of interest in these other completely not related to academic topics, you know, I really liked birds. And I really liked bird watching and dogs and dog training and dog shows. And I used to tell my mom, you know, I really wish I could change my obsession. If I could just be obsessed with math or be obsessed with reading, then I could do those things, the way that I can do bird watching and dog training, and nobody cares about bird watching and dog training. I wish I could be obsessed with something I care about or something that other people care about. And we just did not have the language of special interests because you inherently associate the word obsession with something kind of negative. And it wasn't it just it was different. And if we had had that language, I think that might have been helpful. Yeah. And
KC 56:25
I also think, as a woman, the term obsession even has more teeth to it, because we think about like things that women are interested in are obsessed with as like, oh, how superficial how frivolous? How unserious? Right? Okay, so did you get any therapies or treatments prior or post diagnosis that you think were helpful to you? Yeah, I
Kaelynn Partlow 56:47
kind of had a mixed bag of things. So I had occupational therapy to be able to drive, I was more self aware in high school, and realize that I was kind of behind my peers in terms of social relationships and academic ability. And I decided that driving was not going to be one of those things that I was going to get my driver's license on time, just like everybody else. And I did. I had to cooperate with several months of occupational therapy in order to do that. But I did it as much as I hated it. And I complained, and I argued, and I was a teenager, and I was the worst. And I one time kept my therapist past closed, because we were in some argument, and I wouldn't let it go. And so I held up the entire office so that we could figure out, you know, so it was not an easy path. I was not particularly cooperative, but I did it. I had specialized tutoring to be able to read for several years, I don't know that it's fair to say that I had ABA in a formal sense, because they did not bill my insurance in the way that that typically works. However, I did have providers, ABA providers who worked with me to develop systems and applied behavioral principles to help me succeed. So in a sense, I more or less was a recipient of ABA. And that was really helpful as well, when I was a teenager.
KC 58:01
Do you obviously it's gonna be a whole other podcast. And you don't even have to answer this question if you don't want to get into it. But what are your thoughts on like the ABA controversies?
Kaelynn Partlow 58:10
It is a whole nother podcast.
KC 58:13
Which by the way, if you would like to do another podcast, I'd love to hear your thoughts on it. But if you had a short thing you wanted to say now you're welcome to it's hard
Kaelynn Partlow 58:20
to summarize, typically, you know, my short answer is just that the field is moving in a progressive direction. And it's not a yes, but it's not Oh, well, ABA caused harm in the past, but it's yes. And it's yes, a lot of horrible things happened. And, you know, progression is happening as well. I was recently invited to speak at CAST, which is the Council of autism service providers. I was the keynote, and an audience of 800 people where I talk and they're all ABA providers. And I talked extensively about, you know, the disgusting history of ABA, I made them watch some videos that made them ridiculously uncomfortable, both from autistic adults, as well as some really poor examples of bad quality treatment. And they cried, and they laughed with me and I got a standing ovation. People care providers care a lot, doesn't mean they're good at it. It doesn't mean they know what they're doing. It doesn't mean they even shouldn't be doing it. But they care. And progress is happening. It's a nuanced discussion, for sure. And I definitely have been on the receiving end of ABA, and it's been helpful in my personal experience.
KC 59:24
And then my last question for you. Well, actually, I'm sorry, I have two questions. The first is, I've met lots of parents who find that there is something going on with their kid, usually a young kid, and they think maybe it's autism, and they're on the fence about whether to pursue official assessment and diagnosis, especially if that kid maybe operates that space between okay, there's some obvious differences, but maybe there's nothing like overly distressing happening. They're kind of getting on Okay, do you have an opinion? On like, what you would say to a friend that came to you and said, I'm kind of seeing something but I'm just not sure you know, I'm afraid that if I get the diagnosis, they'll be labeled or it'll, they'll think that people will think they're weird or, you know, will inhibit them, or they'll think something about themselves. But I'm also afraid like, what if I don't get it and they need this? And that, like, what thoughts do you have on that,
Kaelynn Partlow 1:00:16
as it pertains to people's fear of being labeled, especially for you know, for their child to be labeled, I would say that either you can pursue the label of autism potentially, or the world will call them something else. And that's your choice. The world will either call them weird, or, you know, stupid, obnoxious, difficult, egotistical, narcissistic, the R word, I mean, take your pick, there's a bunch of a whole host of really horrific names, that autistic people are called for their natural autistic traits. And so if you can replace that with I'm not selfish, I'm not self absorbed, I'm not weird. I'm not, you know, whatever, I'm autistic, that doesn't hurt your self esteem that tells you who you are. And it kind of helps you navigate the world, whether or not you're going to seek out support, because the only way to get that, especially as a kid is to have a diagnosis. But even that aside, even if you're not interested in any sort of services, or supports, which is kind of silly, if that were somebody's opinion, even if that were, you know, you're either going to be labeled autistic, or they're going to call you something else. And that's, it's unfortunate that that's how that works. But that's how that works. And
KC 1:01:24
is it your experience that kids understand that difference? Even if they're not verbalizing it to their parents?
Kaelynn Partlow 1:01:31
I did. I don't know if all kids do, it's something I think about a lot, because I'm in this unique position where I work at a school that only accepts autistic students. And so they don't really have the experience that I did, where they're different from everybody else, because you know, they are because they're an individual and they variants, autism is, of course, unique to them. But they're not alone in these experiences. Everybody around them also engages in stimming. And, you know, it has some difficulties every now and then with self regulation. And so it's really interesting to watch people grow up in an environment where they're not really the odd ones out. And it's kind of healing in a way I think,
KC 1:02:09
which they are only there because they have that quote, unquote, label, I think that's like speaks to what we're talking about, which is there's more than just access to services, I think sometimes the identity portion, like you're saying, and then the knowledge of like, I'm not broken, like even access to a community like that is contingent on getting the label, quote, quote, right.
Kaelynn Partlow 1:02:30
And I mean, I think, you know, when they say an autism diagnosis saves lives, I think that's true. I recently I attended a talk about suicide in autism, and how I want to say the rate for suicide for autistic people, they said it was like nine times the average, which is really, really distressing. And I think having that label, which gives you access to understanding your identity, and also potentially a community of people who understand your identity and relate to it on a very personal level can potentially, you know, be life saving.
KC 1:03:00
Alright, last question. What do you think is the biggest misunderstanding has like some huge, this is such a huge, impossible question to answer. But what do you think is the biggest misunderstanding of autism that you see right now,
Kaelynn Partlow 1:03:12
I think the easiest answer to that is the biggest misconception is the wideness. Or the variety of the spectrum itself, that we're only seeing a certain type of autistic person, online or in media, whether that's, for better or worse is up for debate. But, you know, we're there's certain populations that we are not seeing, for example, we don't see a lot of experiences from people of color, who are on the spectrum. And so, you know, their specific manifestations of autism don't really get talked about as it relates to the cultural differences they might experience. And so yeah, I would say just how wide the spectrum could be, is the biggest misconception that people have a very narrow viewpoint.
KC 1:03:54
Yeah, it seems like there's this representation of like a young white boy child with high support needs, like that's kind of like what everybody pictures. And then like, as we think about adults, you know, if you're in the autism spaces online, it seems like once again, there's usually one representation, but it's like, yeah, it's like it's white women, often late diagnosed with lower support needs. And so it's makes sense that if that's the only kind of two pictures you see that, you know, it's hard for us to know what it looks like outside of that. Caitlin, thank you so much. Again, this was such a great conversation. Is there any thing that you would like to plug for yourself that you know, if people want to follow you online or resources that you like,
Kaelynn Partlow 1:04:39
I mean, yeah, follow me online. Follow me on Tik Tok, Instagram, YouTube, Facebook, I'm kind of everywhere. If you search my name, I'll kind of pop up wherever it is that you use social media, and also, supposedly, I have a book coming out this summer, if all the things go, you know, the way they're supposed to go is called Life on the bridge and hopefully, like I said, it will be released summer 2024
KC 1:04:59
Oh, that's so excited. I was just thinking as you were talking like, gosh, I hope you write a book one day. Yeah. Okay, well, you'll have to come back when it's out and we'll talk about it and plug it and get people to yeah to go buy it in droves. Wonderful. All right. Well, thank you so much. And you guys go and follow Caitlin. She has wonderful, wonderful content and you will learn so much. And if you work for an organization that would love a speaker who is autistic talking about autism. I also recommend that you check her out. Alright, thanks, Caitlin. Thank you
Transcribed by https://otter.ai

Christy HausslerJuly 8, 2024

98: Autism (actually) Speaks with Kaelynn Partlow

Transcript