Autism and Eating Disorders: Dying to Be Thin

Hi everyone, Kelly Mahler, Occupational Therapist. I’m really excited to be joined by Kim Clairy who is a fellow Occupational Therapist, and she is here to talk with me about two misconceptions that many people have about the overlap of autism and eating disorders.

Introduction

Kelly Mahler: So, Kim, would you start out telling us a little bit about yourself, please? What makes you a further expert in talking about autism and eating disorders?

Kim Clairy: I have autism and I’m in eating disorder recovery. I was in and out of psychiatric places for about 10 years. I was told that I needed to live in a nursing home and that my autism was severe because the behaviors I was displaying were severe looking, but a lot of it was due to the misunderstanding of autism and eating disorders and not getting the right treatments.

Kelly Mahler: I think you went through many, many years seeking out treatment for your eating disorder where your autism was not understood, even despite you requesting for support with your autism traits as well. Is that correct?

Kim Clairy: Yeah. I pretty much had to create my own stress strategies and my own tools, and I really learned how to advocate for myself in order to get to where I am today. One of my passions now is trying to educate other people on this topic, so others don’t have to experience the things that I experienced in treatment and with providers.

Misconception #1: The Sensory Aspects of Eating Disorders

Kelly Mahler: In this video and in our blog, we want to talk about two misconceptions that many people have about the overlap of autism and eating disorders. The first misconception is about the sensory aspects of eating disorders. Many people assume that autistic people might have an eating disorder because they don’t like the texture of food, but I think it’s like so much bigger than that. Could you explain that a little bit, please?

Kim Clairy: Yeah, for me personally, the texture isn’t even an issue sensory wise, but I am very sensory affected. I can’t eat when I’m dysregulated and if my auditory and visual senses are over-registered, I will struggle to eat. The noises of dishes clanking, or the microwave, or things going on outside, a leaf blower across the street or people talking, all that stuff can just be too overwhelming for me and I’m not able to carry out the task of eating. The sound of chewing really bothers me too; especially my husband William’s chewing of certain foods. It’s not all foods, its certain foods, but it makes me very angry inside; I have like a rage reaction. I’ve learned to control it. I usually try to scoot as far away from him as I can, or I try to chew things myself so I can’t hear his chewing, but it’s painful. Also, with sensory stuff, certain smells can make me want to run away, like the smell of bacon. I can smell bacon. I have a very strong sense of smell so I can smell it miles away, and it stinks really bad. It makes me want to take my clothes off and just run away because the smell clings on to my clothes, and then it’s like a fire in my nose and it hurts. It’s like if you were trying to eat a meal sitting in the back of a dump truck, that would be really hard for you.

Kelly Mahler: Absolutely. That’s a great analogy. Like a big dump truck full of manure.

Kim Clairy: Yes. So things that I’ve had to learn for recovery is that I need to make sure that I’m regulated, I have to take breaks all throughout the day and assess where I’m at and my level of regulation. If I need to take a break before a meal, that’s okay. If I need to take a break in the middle of a meal, that’s okay. It can be really hard to sit still for that long. The last thing I want to do is sit down. It’s like my body just doesn’t like it. Wearing weighted stuff can help, but it takes a lot of energy to sit and remain seated. And if I don’t have that focus energy, if I’m not regulated cognitively as well as sensorially, then I’m not going to be able to sit. I’m just going to walk around, which sometimes you have to. Sometimes I have to eat while I’m pacing, or I use a rocking chair at our table while I eat, and that has been working really well, actually.

Kelly Mahler: That’s great. And I think that’s so interesting that you said it takes you a lot of energy to sit still, which is quite the opposite I would think for what many people might think; that it requires no energy to sit still, and it takes a lot of energy to continually move. So that’s really quite the opposite of what you’re saying your experience is, am I correct?

Kim Clairy: Yeah. Yeah. When I have to, when I’m required to be still, I have to focus really hard on being still.

Kelly Mahler: And then that probably doesn’t leave you a lot of extra resources to focus on everything else, like the task of eating.

Kim Clairy: Yes.

Misconception #2: The Difference Between Eating Disorder ‘Behaviors’ and Autism ‘Behaviors’

Kelly Mahler: The other second misconception we want to talk about is the difference between what is an eating disorder behavior and what is an autism behavior. So, for example, you might be looking at one behavior, moving, and perhaps through an eating disorder lens that could be viewed as trying to burn calories, but from an autism lens that could be looked at as trying to regulate your body. So do you want to talk a little bit about why it’s so important to try your best to figure out the “why” behind what a person is doing?

Kim Clairy: Yeah, it’s essential because without knowing the “why”, you don’t know how to proceed to the next step, because if I’m doing something for an autism reason, I need to look at it from an autism lens. Usually I will need to use strategies that are sensory or visual, or I need structure or something of that nature. When it’s an eating disorder behavior, normally for me, it’s going to be anxiety based and I need to look at it usually from a cognitive behavioral standpoint at that point. Using an eating disorder strategy for autism isn’t usually helpful. So, I’ll give an example, purging, throwing up. I can throw up because I’m anxious about food. I could throw up because of noise and overstimulation. I could also throw up because I’m having very intense emotions that I just don’t know how to express. I didn’t figure that out for a long time. But then I started noticing that when I heard noises like a train or a leaf blower, my body would prepare itself to throw up. All I could think about in my head was “I want to throw up, I want to throw up, I need to get away.” That’s completely different than when I’m wanting to throw up because I’m scared of the food. Instead, I’m thinking “I’m anxious about what this food is going to do to my body”, I’m scared I ate something that’s going to hurt me. That kind of thought process it’s completely different.

Kelly Mahler: Yeah. And I can see why that would be so important to the outcomes of treatment, and really helping to figure out the “why” behind what you’re experiencing.

Kim Clairy: Yeah. And with the example you gave in the beginning with the movement, that’s a huge issue for a lot of people with autism and eating disorders. For me, I need a lot of movement to function and to regulate and to be able to do what I need to do to remain in recovery, but it can butt heads with the eating disorder because, with my eating disorder, historically, I do over exercise, and I was doing things to burn calories.

Kelly Mahler: It’s again, figuring out why you’re doing that in the moment. Is it because of the eating disorder or the autism? Is that right?

Kim Clairy: Or both. Sometimes it can be both too. And that’s when it’s extremely tricky because there’s not one thing that you have to do to help cope. You have to come at it from a whole different angle. Which one do you need to target first? And if it’s sensory, always target that first. Actually, I always target the autism first.

Kelly Mahler: Yeah. I think that’s a good rule. Well, Kim, thank you so much for joining me. I know we have a lot more to talk about. We’re going to be joining each other in a live online course with more about this topic of eating disorders and autism. So, thank you so much for joining me.

Kim Clairy: Yes. And we hope to see you there!

Kelly Mahler: Yep! Bye.

Want to learn more about interoception? Check out these resources!

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