Interview between Speaker 1 (Meg), Speaker 2 (Kim Clairy), and Speaker 3 (William)
Episode 78 – Sensory Processing, Autistic Catatonia, Safety, & Love: An Autistic OT’s Perspective
[Introductory music]
Welcome to the Two Sides of the Spectrum Podcast. A place where we explore research, amplify Autistic voices, and change the way we think about autism in life, and in our professional therapy practices. I’m Meg Proctor from learnplaythrive.com.
Meg:
Before we get started, a quick note on language. On this podcast, you’ll hear me and many of my guests use identity-affirming language. That means we say, ‘Autistic person’, rather than, ‘person with autism’. What we’re hearing from the majority of Autistic adults is that autism is a part of their identity that they don’t need to be separated from. Autism is not a disease, it’s a different way of thinking and learning. Join me in embracing the word ‘Autistic’ to help reduce the stigma.
Welcome to Episode 78 with Kim Clairy. This episode weaves through Kim’s experiences of existing in the world as an Autistic person and an occupational therapist. In the conversation, we explore what having sensory differences feels like to Kim, what helps her and what doesn’t, and how she applies this to her work as an OT supporting other Autistic people. Kim describes her experiences of Autistic catatonia and how this is different from burnout, and what supports might feel helpful to an Autistic person who is experiencing catatonia. We talk about Kim’s marriage, which is a truly supportive, interdependent, accepting, neurodiverse relationship. And we talk about the impact that this has on her daily life and her husband’s. Kim ties in the theme of safety throughout the conversation and helps us translate the takeaways to our work as professionals supporting Autistic people. If you’ve learned from Kim before, you won’t be surprised that she brings in elements of her own lovely poetry about her experiences to help tell her story.
Many of you may know Kim from last year’s Neurodiversity Summit. She presented together with Kelly Mahler on the topic of interoception. Kim is a licensed occupational therapist with expertise in trauma, eating disorders, and sensory processing. She teaches and trains widely in these areas, and she’ll be speaking again at our next Neurodiversity Continuing Education Summit, again, with Kelly Mahler on interoception. If you haven’t checked it out yet, you can go to learnplaythrive.com/summit to see the lineup. The speaker panel is truly incredible. We have 15 talks; some are returning from last year and others are new. Dr. Winnie Dunn is speaking on sensory processing in everyday life. Registered dietitian Naureen Hunani is speaking on neurodiversity affirming approaches to selective eating. We have a whole set of talks on diversity, equity and inclusion, disability justice, and so much more. You can get the details and grab your spot at learnplaythrive.com/summit. Today is just a taste of what it’s like to learn from Kim Clairy. Here’s the interview.
Hi, Kim. Welcome to the podcast.
Kim:
Hi, thank you for having me.
Meg:
I love talking to you. And some of our listeners might know you from your work, as well as from last year’s Neurodiversity Summit, where you spoke together with Kelly Mahler on interoception. But before we dive in today, can you give us some background about you? Let’s just start with what you do professionally.
Kim:
I’m an OT. And I also do private consulting and talks. I mainly do a lot of educational talks on autism, and I do special projects that people asked me to help on.
Meg:
How did you come to focus your work the way you do and practice the way you do? What’s your story around how you arrived at this place?
Kim:
So, this is gonna be kind of long. But okay, I’m going to read a little bit. So, for about a decade, I was in and out of psychiatric and medical hospitals for anorexia nervosa, which is the eating disorder. And during that time, most of my providers — well, all my providers in those settings — did not understand autism in adults, despite how hard I would try to explain it to them. And I was told that my autism was moderate to severe, and that I would need to live in a nursing home. And then, eventually, I was also told that they’re gonna put me in hospice, because I would never recover. And that was in 2015. I knew that they were wrong, and that their assumptions and labels of me were wrong. And that I just needed treatment that accommodated and worked with my processing differences, especially those that overlapped with eating disorder and autism. And then, in the hospital, after being told that they’re putting me in hospice, I was contemplating suicide by pulling out all my IVs and just refusing to eat, because I was so tired from fighting with healthcare professionals, and trying to advocate for myself, and not being able to get through. And my faith was a huge part of my life. And it’s what kept me fighting up to that point. And as I was laying in the hospital bed after they told me about hospice, I was writing emails to people that I cared about saying bye, and I apologize for not being able to recover. And I had my earbuds in, and I was listening to music, and I heard a song. And ironically, it was the same song that I heard when I bought my dog, Lucy, from the shelter. She’s actually 17 this year. She still acts like a puppy. And the lyrics of the song were, “What if Your blessings come through raindrops? What if Your healing comes through tears? What if a thousand sleepless nights are what it takes to know You’re near? And what if trials of this life are Your mercies in disguise? We pray for wisdom, Your voice to hear; and we cry in anger when we cannot feel You near. We doubt Your goodness, we doubt Your love, as if every promise from Your Word is not enough. And all the while, You hear each desperate plea.” And then, I just broke down and started crying and praying. And I told God that if I was able to conquer the situation that I was in, I would then dedicate my life to speak on autism, especially autism in adulthood. And that I would educate providers through my story, because I didn’t want other people to go through what I did.
Meg:
That’s so lovely. I appreciate you sharing your story. And, really, you sharing your insight, both with your clients, and also with the rest of us who are looking to get a deeper understanding of what our clients might be experiencing, and how we can better support them, really, in any setting. I’ve had so many podcast guests at this point talk about the experience of needing medical care and not being able to get it because their providers didn’t understand Autistic people. It’s like there’s barriers everywhere we look. And you do such a beautiful job of trying to help us dismantle those.
Kim:
Thank you. It’s like the people who are the people who are supposed to help you, they’re actually making matters worse and hurting you. And that’s part of my motivation, is just to break those barriers down or help to break those barriers down.
Meg:
I’m interested in how all of these topics that we’re going to get to in today’s podcast episode sort of tie together around the theme of safety. At last year’s Summit, you and Kelly Mahler, like I mentioned, presented about interoception. And y’all talked about how knowing how you feel inside is essential for self-determination, autonomy, safety. Safety really became a theme of the whole conference through every talk. The core goal that our speakers were asking us to strive for wasn’t like developmental milestones, it was safety for our neurodivergent clients. I’m wondering if you could speak about the lack of safety many Autistic people may feel day-to-day, moment-to-moment, living in this world that’s set up for neurotypicals.
Kim:
I think that in regards to safety, there are so many different ways that somebody can feel unsafe. And it is really important that you feel safe, because otherwise that’s gonna be what you’re, biologically, that’s what your focus is going to be on, is to be safe to survive. And I think that a lot of Autistic traits, such as just the way that we think; we think very detailed, we think very — well, I think, very specific. I see, I just see so much more it seems like than other people. And I notice changes and when things are different, when there are changes in my sensory environment, or if there are changes in schedules, it puts my whole world upside down. And I get very confused, and I don’t feel safe, because I don’t know what to expect. And I think to better explain this, can I share something that I wrote in a journal one day?
Meg:
Please.
Kim:
Okay. So, this was when an unexpected guest came to visit my dad one afternoon, I think, last year, actually, and this is what I wrote: “I do not know left from right, or up from down. My world is chaos, I feel uncertain and unsafe. I want to run away in the woods where life makes sense. Where I can breathe, where I know I will be safe. I do not know how I will cope. It feels as if I’m in a war zone, where everywhere I go is unsafe and unexpected can happen. I just need calmness, and consistency, and routine, and a place where I can regulate. I need to make sense of this world. Without these, I’m not going to be able to think, move, or interact with others.” And that was just from a guest coming unexpectedly, and that change. And the Autistic brain often struggles with prediction. And that’s why we thrive on consistency. That’s why it’s important to have things the same. Because when we don’t know what to expect, our brain focuses on the current task. And if it focuses on the current task, but when there’s something different, our brain goes into processing those differences and the bits and pieces of new information. And whatever task is at hand is not as important as trying to determine whether I’m safe. And I need that time. So, something unexpected doesn’t give my brain enough time to piece together everything to know I’m safe. And then, it just goes into survival.
And it’s the same thing with sensory stuff. So, I interpret sensory information differently depending on environmental factors. When I go into different lighting, my eyes see very different in different lighting. Things can be stretched out in one lighting; it can be moving funny. I can, I have a lot of visual distortions based on how my eyes are perceiving what I’m seeing. And same thing with my other senses, and also how my body reacts within those situations. It can be unknown, and it’s not in my control. And it’s unpredictable. And, again, unpredictability leaves me feeling unsafe in my body, even within known environments. So, I think for a lot of people with autism, well, as far as intersection goes, understanding what all those differences are inside of you, when I go into a room, and I’m experiencing these distortions, knowing that it’s because of how I’m processing the sensory information, that helps me to feel more safe because it gives me a reason as to why I’m experiencing what I am.
Meg:
That makes a lot of sense. And I think it’s a really important missing step in a lot of the ways that we support Autistic folks. You have so much insight. You’re explaining, I had this unexpected visitor, and then I felt very unsafe and dysregulated because I couldn’t have predicted that, that didn’t feel good to me. But you have all of this insight that you’ve developed over time. And often, we’re looking at our Autistic clients who are dysregulated. And we are missing the step of walking through the process with them of figuring out how they feel, and figuring out what types of things make them feel that way, versus supporting them in feeling safe. And it’s powerful to hear you describe your own process and your knowing I would feel safer in the woods, I would feel safer if I had more predictability, more routines, I would feel safer if this lighting situation were different. It’s really powerful for folks to have those tools and be able to identify them and advocate for them.
Kim:
Yeah, because once you identify it, you’re able to pre-plan. And then, if something happens that’s unknown, like, I can’t control the world and the environment. As much as I want to, I can’t. But I can pre-plan for situations so that I feel safe within those unknown situations.
Meg:
Yeah, when we talk about things like visual supports and schedules and to-do lists, I always try to be really clear with therapists and teachers that the goal isn’t to make this, you know, schedule of what your school day looks like and laminate it, and have it become this memorized routine. Because it’s invariably going to change. And the kindest thing we can do is to be able to show in a predictable way that the change is happening. Not kind of brush it under the rug, well, this is how it usually is. So, we’re just going to show you this executive function support and, you know, on that day that it changes, well, whatever, we just won’t use the schedule. It’s kind of the opposite of what’s helpful of being able to say, “Here’s what we usually do. Here’s the change that’s happening. Here’s how I can support you,” or, “How can I support you in coping with that change?”
Kim:
Yeah, and I think a lot from some people — parents, especially — that changes happen, it’s just a part of life. And yeah, it is a part of life, but it’s also part of life to know how to pre-plan and prepare. And if you expect me to follow your directions and to do whatever tasks you want me to do, I need to be able to do that. And knowing changes, knowing what’s gonna happen is what enables me to do it.
Meg:
I love that. I know when Rachel Dorsey teaches about strengths-based goal writing, she often uses the phrase ‘unlimited access to whatever type of supports’, ‘with unlimited access to sensory supports’, ‘with unlimited access to executive function supports’, right. The goal isn’t for our Autistic clients to tolerate change better, it’s for them to have the supports they need to feel safe when these changes happen. We know that these things accumulate in the bodies of people. I actually don’t know that we have talked on the podcast much, if at all, about Autistic catatonia. And that’s something that you talk about, and teach about, and have experienced. And you talk about just how unsafe you feel when you’re in that state. I want to start by just asking you to define or describe what Autistic catatonia is for our listeners.
Kim:
Yeah. So, Autistic catatonia. Well, first, I’m going to say when it normally develops in somebody is usually late adolescence or middle adolescence to early adulthood. That’s the typical age that it starts to show up. And what it is, is it’s a regression in what you’re able to do, in your self-care and your independence. So, if I was able to tie my shoes before, independently, and now I need somebody to help me because I’m getting stuck in tying it and untying it, and tying and untying it, that would be a regression. Or if I’m eating independently, and all of a sudden, I’m not, it’s a regression. It also has deterioration in, for me, I get it in my speech. So, I will go completely mute or start to stutter a lot. My movements will become almost like spastic. And I’ll get these weird postures, so posturing, and get stuck in a position. So, I might stay stuck in a position for hours. And, for example, it was nighttime. I was sitting by the creek and I got into a catatonia episode. And I was just standing there. And it was light at first outside. And then, you know, an hour went by and it started getting dark and I had no way of moving. My body was, like, my mind, my brain says, “Okay, Kim, you need to walk up the stairs and go inside.” But my body just wasn’t listening. It’s like a disobedience. And that can make me feel unsafe. There are a lot of bears where I was living, and it was bear season. And they come out at night. And not being able to communicate or say anything either and scream out my husband, “I need help,” you can get into an unsafe situation. With catatonia also, sometimes you see something called automatic disobedience, which is when you tell the person or ask the person to do one thing and they do the exact opposite. And it’s not that they do it on purpose. They might want to often do, want to follow your directions, but their body disobeys the brain. That’s how I say it.
Meg:
Can you talk about how this is different from sensory overload, stress, and burnout?
Kim:
Yeah. So, with sensory overload, that’s just, that’s too much sensory information coming in. And usually when that happens, my brain starts to, I like to say, it gets holes like Swiss cheese. And the pictures that I think starts to get black and spots, and it becomes hard for me to decipher them. And then, it just goes blank. So, in sensory overload, my mind usually goes blank, and it comes on usually pretty suddenly. Catatonia can come on suddenly as well. But my mind doesn’t go blank. I’m able to think. I’m able to, you know, walk myself through directions, and my body just won’t do it. And stress, stress and burnout, that’s usually something gradual that happens. And so, when I’m burned out, I’m exhausted physically, mentally, emotionally. And, but I’m still in control of my body, and I’m able to — it listens to what I want it to do. It’s not gonna get stuck in a posture. And I can usually back it up and say, okay, this is a response to all of these things that are happening. But with catatonia, sometimes it can just occur instantaneously.
Meg:
Yeah, that distinction makes a lot of sense. I appreciate you sharing your experience there. I know you had a poem that you wanted to share from one of your catatonia episodes. So you want to read that?
Kim:
“Staring blankly at nothing, with a spoonful of oatmeal clench tight by curling hands. It’s time to eat. I say to myself, take a bite. Bring the spoon to your mouth. Eyes blankly gazing at nothing, paralyzed, I cannot move. 1-2-3, I count silently. I notice the placement as three round circles. I count them over and over. Patterns pop out. Shapes and lines begin to come clear. I trace the lines in my mind as I notice the pattern set before me. A cold wet substance brushes my leg as an entity nudges my hand. So, let’s see. My trance breaks with a soft head and wet kisses. With one hand I slowly bring my spoonful of oatmeal to my mouth. My other hand gently rest atop the soft head that tenderly caresses my fingers.” Lucy’s my dog.
Meg:
Yeah. How long does a catatonia episode last for folks? Does it vary a lot?
Kim:
Yeah, it varies. That’s the thing with catatonia, is it waxes and wanes. So, it can last for a few seconds, or it can last for minutes or hours or days. The scariest part is when you have somebody who’s experiencing catatonia who is refusing to eat. And that can look like an eating disorder, but it’s not. It’s their catatonia. And sometimes that’s the first indicator that it’s happening. Well, I’ll get a email from a parent that says, “Can you help me? My child has an eating disorder.” And after talking, we discover it’s really, they’re having catatonia. And it can be — it’s very dangerous when that’s happening.
Meg:
I do have another question about Autistic catatonia. For folks who are supporting an Autistic person who is experiencing catatonia, how can they help them or support them to reestablish that sense of felt safety?
Kim:
I think, well, one of the most important things is pre-planning and preventative measures. So, a lot of times I’m more susceptible to catatonia moments when in certain times when I have a lack of structure, when I don’t have enough cognitive stimulation, when I have too much cognitive stimulation, and there’s not enough sequencing supports. Those are just some of the things that can bring on those times. So, I think it’s really important to have those visual and tactile support, those ‘First, then, next’, those visual schedules that we talked about earlier. Those are so important because it decreases the cognitive demand.
But when you’re actually in the episode, using one step directions. So, saying something like, if I’m in an episode, if William says, “Kim, why don’t you go jump on your trampoline?” Okay, my mind’s telling me to move but it’s not moving. So, that’s not going to really do very much and that’s too much information. But if he can put his hand on my shoulder, or take me by the hand and start to lead me without words, and then maybe say, “Jump,” when we get there, then that might be helpful. Or for me, vibration also is very effective. A sudden sensory difference can be helpful. And being really patient, understand that they’re not doing it on purpose, that it is embarrassing sometimes for the person who’s experiencing it. I mean, it took me 45-minutes just to roll up a vacuum cord one day, and I was going at such a slow pace. That’s embarrassing if there’s other people around or I’m making grimacing faces. But I’m not doing it to get attention or to make you look bad. And it’s important for people to understand that and to not take those things purposely — or not take them personally. But understand that, no, that person needs your support right now.
Meg:
Yeah. I mean, you know, hearing you describe your story and your experience, the idea of saying, “Oh, she’s just trying to get attention,” which people do all the time to children, is cruel. It’s just cruel to imagine suggesting that instead of accepting their experience as real and supporting them. And if a child does need attention, then how can we get them that loving, caring attention that they’re seeking, or an adult. I feel like when you try to apply that same line to an adult, the absurdity of it is just crystal clear. It’s interesting hearing you talk about your experience with sensory strategies like feeling vibration, or jumping, with a reduction in language. A lot of professionals, a lot of, I know OT’s, SLP’s, need to hear this that sometimes we’re using way too much language, especially in moments of stress.
Kim:
Yes, you guys need to be quiet.
Meg:
We just need to stop talking. It’s interesting to hear about the sensory strategies that support you and moving from that, that really stressed really unsafe state. I want to talk a little bit more about sensory experiences, both ones that are dysregulating or uncomfortable and how they can support you in engaging more richly and deeply in the things you want and need to do. Can you talk about how that manifests for you day-to-day?
Kim:
Yeah. First, though, so my sensory sensitivities are more than just a dislike or preference. They’re more than a nuisance or something I can get used to or tune out. They’re often disorienting, very painful, disabling, and isolative. And they make it hard to coordinate my body and make carrying out daily tasks and communications exhausting, and sometimes just impossible. And to show that, I’m gonna read something: “I feel sick inside. My breathing is rapid, my muscles tense. I feel frozen, yet I want to flee. My chest is heavy. And my brain is shuffling through unidentified pictures. I want to curl up, I want to cry. But I need to be alone. I am embarrassed and must stay awake until the end, until I can be in my safe spot. I am in a daze. My fingers plugging my ears, my eyes counting the dots on this ceiling, and my fist and toes tightly clenched. It takes every bit of my energy to keep from screaming, flapping, and running away. The noise stops. But this threat continues and I feel no different. The aftershock of this earthquake hits. My movements are now slow. I follow what I see. I cannot think on my own. I want to count. I want to line things up. But I also don’t want to be noticed. At the end, I just follow and recite the next steps. The sequence of cleaning up. And like a turtle caught on a busy highway, I leave the scene in a daze and here I sit alone in my car, calming my system so I can drive home. The aftermath effects will slowly dissipate. But this takes time. I’m exhausted and tired. My being, though, endured the threat. I’m a survivor. I made it through the clashing tones, erratic beats, and stabbing music that played during exercise class today.”
Meg:
Thank you so much for sharing that, Kim. I will say for those of you who haven’t learned from Kim in a formal setting before it’s just this beautiful with Kim showing her art and how it relates to her processing, or healing, or teaching, or understanding, and poetry. I love the creative, multi-sensory experience of talking to you and learning from you and the ways that you share your journey. And I want to harp on the first thing you said about your sensory sensitivities are not a dislike, they’re not a preference, and just circle back to something that has been said on the podcast a lot of times that therapists who are trying to use Systematic Desensitization for sensory sensitivities in Autistic people, it was Damian Milton on Episode Two who described that as torture, right. We want to be really careful about not trying to desensitize to something that is legitimately experienced as pain.
Kim:
Yeah, it’s not anxiety. Like, people, I’ve had that done, too, where they had you try to be still for a minute. And had us sit in this room, still as I could be. And it was torture. And it’s not that I — it’s not anxiety that my body is experiencing. It’s, I don’t have boundaries. I don’t know where my body is in time and space. And I need to move so I can feel the air, so I can feel where I’m at. It’s not because I’m anxious about anything.
Meg:
Yeah, you’re right. And Systematic Desensitization was developed for anxiety.
Kim:
Or OCD.
Meg:
Yeah. So, I want to ask you specifically about your sensory experiences, because I love the way you describe these and I love learning from you on this topic. Let’s start with vision. Talk to us about your experience of vision.
Kim:
Yeah, my eyes are, they’re different. They don’t coordinate very well together a lot of times. So, when I’m reading, for example, this is part of my dyspraxia, where they don’t like crossing midline. And so, a lot of times when I’m reading a paragraph, they skip around. But not only that, they also, depending on the lighting and my level of regulation, the words on the pages move around. And either they are kind of staticky and shuffling side-to-side, or they’re more like an up-and-down. And things on a white background, which is why my notes are colored.
Meg:
That’s true. So, our question-and-answer document that we’re looking at that we sort of used to plan this document, I wrote it in black text on a white Google Doc, and Kim has highlighted all of her notes for herself in like a lavender color.
Kim:
Yeah, it’s so my eyes can process it a lot easier. The white is very blinding for my eyes, and it can feel like spears are just going in there. It’s very tiring, and can be painful. And when I work with people, I experiment with them. I see them virtually, and we experiment with different color background of like the — I usually use a PowerPoint with visuals of what we’re doing. And one of the first things I do is experiment with the colors. And it’s such a huge difference, using different colors. I know, for me, I speak differently with different color shades on. I have special glasses, Eyeland glasses, that do help me to read more fluidly. They also help me to speak more clearly when I’m in certain kinds of lighting. With my eyes, also, it can affect my environment and the lighting can affect how I taste things. So, I can be in one environment and eat applesauce and it’s a really lumpy texture, but then I’m in another environment and I eat applesauce and it’s very watery, like thin liquid, just because of the difference in the light.
Meg:
That is so interesting, Kim. I’ve heard a lot of non-Autistic therapists’ attribute that to routine, like applesauce is something that I eat in this space. So, it’s interesting to hear you say, oh, for me, this is a sensory, it’s a light piece with being able to eat food in one space and not another.
Kim:
It is. And also, with my eyes, this kind of goes into hearing a little bit as well. So, just like my vision and my tastes are connected, my hearing and my eyes are connected as well. So, when I’m auditorily overstimulated, my vision gets really blurry. And I didn’t know this until I was 29 or 30, I think I was 30, till I was 30. And I know a sensitive to noise and I had started wearing noise cancellation headphones while I was at one of the treatment centers for the eating disorder, but I wouldn’t wear them outside of the center because I felt embarrassed. And one day, this was after my husband and I — well, he wasn’t my husband then. But when we had, before we got married, we were visiting my sister, and we’re in an airport and the TSA line. And it was so busy, I was about to just curl up in a ball. And so, I threw all my stuff at him, and got out my headphones, and I put them on, and I said, “Oh, my gosh, I can see, I can see details, I can see people’s faces.” And I didn’t realize that I had been living in this blurry world where faces are very distorted, even my own, and all because of how I was hearing.
Meg:
That is so interesting. And I want to point out that you use the word ‘experiment’ when we were talking about vision, and you sort of described an experiment with yourself when you were talking about hearing, that this isn’t a prescriptive thing. That we’re not going to say, “Okay, for Autistic people, using a lavender background has this effect,” right, we’re going to be curious and help our clients be curious and discover the impact it has on them. And, you know, you’ve said before, for clients who are non-speaking, we can still experiment and watch and learn and discover together with them what works for them. Let’s talk about proprioception, how we know where our body is in space, and vestibular, our sense of balance.
Kim:
Yeah. Like I said earlier, my body, I don’t know where I’m at, it doesn’t have boundaries, and this can mean that when I walking through places I can — I don’t know where my body is in relation to other things. And they’re — I might go through a door or see a doorway and feel terrified, because I’m like, I can’t fit through that, it’s too small, because my body is just way out there. Because it doesn’t, I don’t have anything containing it. It doesn’t have containment. And so, moving and pressure really helped me to feel where I’m at so I’m able to move more fluidly. But also, so I feel safe, safer within my body. And it helps the coordination as well. Because if I don’t know where my body parts are, I’m gonna be not very coordinated, or it’s gonna take me a long time to do things.
Meg:
And what about touch?
Kim:
With touch. So, as with some of the senses, it’s like this, where I might be over responsive, but I’m also under responsive. So, part of touch, I’m very over responsive. So, I absolutely hate wind and I get so angry at the gym because they have all the fans going, and it’s just very prickly. It’s like ants crawling all over me from that light touch. I was working with a young man who was having a lot of biting his teachers and hitting. And we, I was problem solving with him and his mom. And this is an individual who’s not speaking, but he can type. And it ends up that his desk is underneath the vent at school. But all of his behaviors are attributed to either sensory, which it was sensory but not bite — like, he wasn’t craving input in his mouth, or it wasn’t like to get out of something. But it wasn’t, it was because he was in pain from the air conditioner.
Meg:
What a simple fix. It would be fixed once we’ve been curious together with him to learn about what he needs.
Kim:
Yeah. With tactile, so I’m also under responsive, so I can break — I’ve broken bones and not felt it before or I can touch, I have to be careful cooking because I can pick up a hot pan and I’m not feeling the hotness of it until much later than I should. So, then, I get really burnt. And with smell, I’m gonna move on to smell. With smelling certain things, cooking, really makes me want to gag. A lot of cooking smells, too. And the smell of bacon makes me want to take off my clothes or run away because the smell gets stuck on my clothes and then it’s a fire inside my nose all day and I can’t do anything else. It’s painful. So, in my mind, that’s what I do, just stripped down and throw them away. I wanted to mention really quick about hearing, again, and food with people chewing. That can be a big problem as well, is people chewing elicits a rage response in my brain. It’s called misophonia. And it’s not all chewing at certain, for me, at certain decibels and tones and noises that causes it. But it can be a challenge when you’re eating with other people.
Meg:
Absolutely. I’ve heard a number of Autistic folks say that they feel that autism should be redefined as a motor disorder if we’re going to call it a disorder because of the very, very prominent role that challenges with motor coordination can play with so many Autistic folks. Can you talk a little bit about your experience with dyspraxia?
Kim:
Yeah. So, it can be confusing sometimes for the onlooker because I am so coordinated in some things — I played collegiate soccer — but you stick me in a Zumba class, I’m all over the place. I’m running into people. I’m, like, this morning when I went to Zumba class, I go with a bunch of people who are more elderly. But afterwards, they’re just like, you do your own thing. And that’s great. Like, because part of this is with the proprioception, not knowing where I’m at. But part of it, too, is the steps and the sequences and putting together movements in sequential order can be really challenging for somebody with autism and who has dyspraxia. It can look like — and it’s not even just movements like gross motor movements, it’s other things such as with my eyes and with my speech. So, it’s about organizing information to have a motor output and organizing my thoughts into words, and then being able to verbalize it is a challenge sometimes. Part of that is due to dyspraxia.
Meg:
Can you give us a few examples of how you manage your sensory needs, your sensory experience on a day-to-day basis?
Kim:
Yeah. Well, right now I’m walking on a treadmill as we talk to help me. And I also have Theraputty. But I have to incorporate sensory stuff and everything that I do pretty much. And at first, when I was discovering what my needs were, when I was becoming self-aware, when I was going from not being able to do a lot of — I say, not being able to live functionally because all my energy and time was spent just trying to figure it out. But once I incorporated sensory strategies and learned that, oh, if I wear my headphones at the grocery store, I can move around easier and pick out the items that I need easier. And it takes way much less time. And I’m not as tired. And once I figured all of that stuff out, it just becomes part of my daily life. But I have sensory bracelets that I wear, fidgets, and special smells that I use in the morning and in evening, and I carry a sensory bag everywhere. It’s just a part of my life. And it has to be.
Meg:
I just really want to note how everything you’re saying is about sensory accommodations integrated into your daily routine and your everyday life. It’s not about going somewhere to do something that changes you in some way so that in a different moment you can do life. Right. I just, I love hearing that, because I think that’s how we need to be supporting folks, is with accommodations and routines in their real life. What do you think?
Kim:
Definitely, yes. But there are other times when — so, before and after I do certain activities, if I go out to, if go out to a friend’s house for dinner, I’m going to need to do some sensory regulating before and after. But that’s still just a part of my daily life. That’s just like putting on my shoes for me. Not literally putting on my shoes is sensory regulating, but it’s just part of my routine; it’s what I do. And it helps me to engage. You can’t make sensory coping as a, as we say, ‘optional’, but that’s not the right word. It’s, yeah, it’s not something additional that you have to do, it’s just part of what you need to function.
Meg:
Absolutely. You mentioned how you might have a sensory routine to get you where you want to be before and after something, like going out to dinner with a friend. Can you talk a little bit more about, more broadly about the relationship between sensory processing and social interactions?
Kim:
Yeah. It affects it in so many different ways. I, well, with the eating example, that’s one way as you’re going out to — everybody, it seems like everybody in adulthood, not when you’re a child, in adulthood, people just socialize by eating and talking, which is really boring. And I don’t prefer that. But with sensory stuff, it could be really hard if somebody is sound sensitive to the chewing, or to restaurants, and to everybody talking about nonsense. And it can also be a lot of environments are — I don’t know, there’s so much that sensory can affect the socialization. I mean, my ability to talk, my ability to interact, if it’s too noisy, I’m not going to be able to converse with you because my speaking goes away. Or if there’s too many sensory demands mixed in with too many social demands and trying to figure things out, I’m processing all this information. And I’m not going to be able to talk to you because I’m just processing. And then, there’s things people like to do. Like I said, adults just like to eat and talk. But I like to move and do, do things like rock climbing.
Meg:
I was gonna ask you what you like to do. I don’t share your sensory experience, but I do agree with you that eating and talking gets boring. What are your favorite ways to connect with your people?
Kim:
I like to walk and talk, or hike and talk. I like to just meet in a group of like one or two people. Zumba is great because I’m not talking, but I’m socializing through my energy and through our movements, or engaging in an activity together. I think my favorite ways are just doing an activity together. Not necessarily talking always. But it has to be active.
Meg:
While we’re on the topic of connecting, it makes me think about your relationship with your husband. We’ve been talking a lot on the podcast recently about Autistic romantic relationships, the difference between autonomy and independence, how we are all beautifully interdependent and our goal for that shouldn’t be any different for our Autistic clients. You and your husband have, what it sounds like from all of your descriptions, as a respectful, strengths-based, complimentary way of being together. Could you share a little bit about that and how it how it looks and feels just to hammer home the point of interdependence being beautiful and human for all of us?
Kim:
Yeah. Can I get him?
Meg:
Yes, please.
Kim:
Okay, I told him to be on alert. So, hold on.
William:
Hello.
Meg:
Hi. Glad you’re here. Do you want to introduce yourself?
William:
Oh, yeah. So, I’m William. I’m Kim’s husband. And she has called me in to ask me a question here.
Kim:
No, just to be a part of this.
William:
Oh, okay.
Kim:
About how our relationship is, how we help each other out. Can I read my poem? I’m gonna read my poem first.
William:
Sure.
Kim:
Okay. So, this is a poem that I wrote about William: “Looking out, but no longer able to go in. You came and sat next to me. I used to be a prisoner of the outside. I was also held captive within. I was trapped until you sat next to me. Beautiful world that I see. Thank you for coming in to be with me. You asked before you took my hand. You crawled with me and then you helped me to stand. We stood up together, but I fell back down. But then you kneeled beside me on the ground. I covered my ears, I closed my eyes, but you still stayed there by my side. You told me to do what I needed to, and that you would always be there to help see me through.”
William:
Thank you.
Kim:
So, 2015 is when they told me that I needed to go to hospice. And then, I’m kind circling back to the beginning. And I told, like, no, I was eventually discharged home with my parents. I met William two months later. And he was able to help me in ways that nobody else was able to help me because he took the time to understand me and he took the time to let me know that it’s okay to be me. That it’s okay that I’m flapping, it’s okay that I’m melting down, and kicking the walls, and walking in circles, and hitting myself when I’m overstimulated. It’s not okay to hurt myself, no, but it doesn’t make me a bad person. And he was able to pull me out of that spot of feeling that I was inadequate, that I was wrong. What have I done for you?
William:
So, well, you know, you’ve inspired a book series, which, you know, that was nice. But, you know, Kim has been just a really awesome partner, because she comes at things from such an original angle. She’s not always looking at things through a neurotypical lens. And so, definitely for problem solving within relationships, you know, every relationships hits those speed bumps.
Kim:
It was very emotional.
William:
Well, you know what, I’m actually not that emotional, but she thinks I’m emotional, because she looks at things —
Kim:
Wink, wink.
William:
So, because she looks at things from such a atypical angle, she’s been able to be a real problem solver within the relationship when we come to, you know, one of those meetings where it’s like, well, gosh, you know, I want to need this and she wants to need something else. And, you know, so Kim is the one who can kind of think outside the box to come up with a solution to say, well, here’s how we can sort of work around.
Kim:
What else?
William:
[Laughs] You didn’t like that answer?
Kim:
No, I do, but you’re going on.
William:
[Laughs] Okay. Besides that, Kim is also just a really fun person to be around. Kim kind of really helps me to remember the childlike sense of wonder, just going out and having fun and not really worry about, you know, what other people think, walking in the rain and things like that.
Kim:
Yeah, ‘cause I find that so many people miss the beauty of, they miss so much beauty. Because they don’t notice. And I notice. But you’re, you have helped me to understand that it’s okay for me to notice. It’s okay that I notice.
William:
Absolutely. Yeah. And it also helps — so, both Kim and I sort of live, you know, lives that are just a little off kilter from normal. And that, I think, helps because Kim has such an open mind, you know, like with our honeymoon, it was like, hey, we’re gonna backpack Europe and we don’t necessarily have a plan.
Kim:
Yeah, we did.
Willian:
Yes, you made me you sort of — Kim sort of forced me to make a little bit of a plan to make her feel more comfortable. But at the same time, you were very much open to the idea of like, we’re just going to kind of go explore.
Kim:
Yeah, explore and play, and to learn —
William:
To see what happens, you know, whereas a lot of people would be like, I don’t want to, you know, pack a backpack and bum around here on my honeymoon, I want to go to Fiji or someplace really, really nice. Whereas Kim was, is much more open to those types of atypical adventures.
Kim:
Active and not sitting and eating.
Meg:
[Laughs] I’m so glad that I didn’t have to try to ask a question anywhere in the moments after you read that poem. I’m just sitting here crying. But I’m also noticing the dynamic that you have when you talk about in your hardest moments, he held your own strength back to you. And the way that you both describe this relationship as healing, it sounds like, it’s as accepting who you are, finding parts of yourself that get squashed, lost, you know, especially for folks who are put through all different kinds of therapies. They get treated out of you. It sounds like such a journey of finding your deepest authentic selves, building your life on your strengths, accepting yourself and each other, and really celebrating that together.
Kim:
Yeah. I think that at the times when I start to fall down, he’s there to help pick me up and the times that he starts to fall down, I’m there to help pick him up. And I, if you were to ask me, you know, 10 years ago, to think about what my future would be like, it would not be this at all. And where I’m at with accepting myself. And it’s so important to have those people in your life that accept you for who you are, and help you to embrace the wonderfulness of you.
Meg:
We need to take that as our call to action as professionals supporting neurodivergent folks that we can be sometimes the first to accept a child as they are and celebrate them and build their sense of self and intrinsic goodness, rather than the constant trying to change a person. It’s lovely to see what that looks like as it unfolds in adulthood. So, thanks for sharing your journey together. Before we wrap up, Kim, is there anything you want to bring us back to or any other takeaways that you hope people get from this conversation today?
Kim:
I wanted to go back to what you were just saying about providers being — well, I don’t remember the exact words — but being that person that, that first step person, and that is so important. It’s also important to remember that you might be that first step, but you also might not see the results of that first step right away. And because it’s a process. And you could plant that seed that ends up blooming until, like, just wonderful things. But that might be a little bit later down the road. But you can be that first one, or that second one, or that third one. It’s just important that you’re there for your clients.
Meg:
Thank you so much. And what are you working on now, and where can we find you online?
Kim:
Oh, gosh, what am I working on now?
Meg:
You’re working on a talk for the Summit!
Kim:
Yeah, I’m doing a talk for this Summit with Kelly Mahler. And we’re doing it on interoception, which is a great topic. And people will definitely need to come and listen to us talk. Not because we like to hear ourselves talk, but because you’ll learn a lot. And I’m also doing a lot of stuff right now in sensory processing, a lot of different talks. But you can find my website, which is kimclairy.com. And William helped design it. But it does need to be updated.
William:
It always needs to be updated.
Kim:
I know. And feel free to email me but email me through, not through the website, because sometimes I don’t get it then. But I’ll leave Meg my email to link, so people can email me if they have questions or comments or anything.
Meg:
We will put it in the show notes. Thank you so much. Thank you to both of you for sharing your time and insight and your stories today.
Kim:
Yeah, thank you. Thank you, everybody, for listening.
[Ending music]
Thanks for listening to the Two Sides of the Spectrum podcast. Visit learnplaythrive.com/podcast for show notes, a transcript of the episode, and more. And if you learned something today, please share the episode with a friend or post it on your social media pages. Join me next time, where we will keep diving deep into autism.
