Monday, July 2, 2018

Autistic People Move Differently, Too

hold me closer tiny dancer
Photo © Janine | Flickr / Creative Commons
[image: Photo of a person from mid-thighs down, standing on tippy toes,
wearing red over-the-knee socks spangled with pink and black swooshes.]
Sarah Kurchak
www.riskyfuel.com

As an autistic person who used to work as a personal trainer and fitness instructor, I have a lot of complicated opinions on the way that autistic people are taught to work with their bodies in our society.

I have, at best, a healthy distrust of the way that the fitness industry is currently run for people of all neurotypes, and worry that its focus on aesthetics, weight loss, and dangerous all-pain-no-gain workouts like CrossFit often undermine its potential to genuinely help people. Instead of teaching us to accept ourselves and learn to love and to work with the bodies we have in a healthy and productive way, current fitness trends reinforce ideas of punishing ourselves and pushing ourselves past in our limits in the quest of some superhuman ideal form. And I worry about how this philosophy has the potential to combine with treatments that are focused on on eradicating any sign of autistic behaviors to further alienate autistic people from our bodies, and cause us more harm in the name of ostensibly making up better.

On the other hand, I’ve also experienced some positive changes in my life as a result of my own physical fitness training. Learning how to run—a process which took a few decades and cost me my favorite pair of pink running shoes, as I detailed in a 2016 article for Refinery29—taught me how to connect with my body in a way that I hadn’t known was possible for someone as clumsy and confused as I was. Taking up weightlifting and martial arts helped me to feel better about my body and feel better in it. And I truly believe that, if taught properly and with a great deal of compassion, physical training for autistic people can genuinely be beneficial for us. But it has to be done by caring professionals who have the right idea and the right ideals.

As such, I’m always interested in connecting with thoughtful and at least somewhat like-minded professionals who are still in the field of physical fitness and therapy to see what their thoughts on the matter are—and how their philosophy is reflected in their current work. Which is why I was thrilled to be able to interview MacKenzie DeLoren, BS/MS, OTR/L, an Occupational Therapist who works with autistic children at Laughing Giraffe Therapy and autistic adolescents at a special needs school in the San Francisco Bay area. Here’s what she had to say about her career, nutrition, obesity panic, her own struggles to master certain physical tasks, and how that’s influenced her empathy for her students’ journeys.

Sarah Kurchak: When we were scheduling this interview, you mentioned that my article about developing body awareness well into my adulthood helped you to understand some things about your own development. Would you be willing to talk about your own challenges with sports and physical issues growing up?

MacKenzie DeLoren: I was always that kid who was the slowest runner in the class every time we had to run the mile. I hated team sports because I was always the weakest, the slowest, the clumsiest on the team.

In high school, I was really lucky because our school offered three different types of PE classes to finish our PE credits: team sports, individual sports, weightlifting, and dance. I took dance purely to get away from all of the other things. I knew I wasn’t good at any of those, but I hadn’t tried dance yet. So I ended up in dance and it ended up being … it was probably one of the more humiliating experiences of my life, but it also [made me realize that] if I just do this over and over and over again, I can actually get it. That helped a lot to kind of get a sense of my body.

We had these giant rooms with floor to ceiling mirrors, and having that visual feedback helped me to understand where my body was in space, what it was doing, and what it was supposed to be doing. Having that opportunity for the visual feedback really helped, but I still didn’t feel good about doing any time of physical activity, because I was sixteen and super self-conscious.

When I got out of high school, I found a yoga class through my junior college and I got into yoga through that, just trying to get me out of my head and get me into my body a little bit, because I was so stressed out with college. Yoga actually was where … I remember in your article you said something about how running was the place where you kind of found peace with your body and you started to understand it and get into a little more. That was yoga for me. I’ve been doing yoga for ten years now, and I actually just got certified as an instructor last year. I love it because I feel like similar to how you were in your journey of being able to offer that service to other people to help them get into their bodies, and not judge their bodies in the same way. That’s where I wanted to be with yoga.

Kurchak: What would you say are the most common issues and needs that you see when you are working with autistic clients?

DeLoren: I would say the most common issue is dyspraxia. Dyspraxia is when you have a lot of trouble with motor planning, which is our ability to learn new movements. So it’s not the practicing part of it, it’s the learning part. When you’re introduced to [a new movement], how smoothly can your brain understand what the demands are and get your body to do that?

I would say that’s the number one reason I get kids into the clinic: because of that type of dyspraxia. It causes a lot of other issues, too, with their ability to regulate, and to be able to work functionally in their school environment, and in their home environment, because if you don’t have a sense of where your body is, it’s really hard to interact with anything else.

Kuchak: That’s not exactly the same as what you went through growing up, but does your own history with movement help you to sympathize with your clients? Does it ever take you back to those dance classes in front of the mirror?

DeLoren: Oh, totally. Totally. I have a lot of empathy for the kids I’m working with, especially my high schoolers. I work at a school specifically for kids with autism, and I work a lot with the 14-22 age range over there and I’m definitely like, “Man, I’ve been you. I know how hard this is.”

A lot of our kids are severely impacted by their autism, so some of them have an awareness of where typically developing kids are and some of them don’t. And, for my students who do have that awareness, I’m very aware of how I speak to them about what we’re doing and what we’re trying to get their body to do because I know that’s a struggle. Just having that awareness that “I see all of the other kids doing this and I’m not.” That’s a hard realization for anybody, and I think being in that dance class and seeing classmates of mine do these perfect pirouettes and me just looking like “I can lift my foot off the floor and put it down again…” There is a huge empathy for that learning curve because that learning curve really does feel steep when you’re having a hard time feeling your body.

Kurchak: On the subject of communication and being attuned to your clients’ concerns and needs, there are a lot of autistic people who might not necessarily experience pain in the same way that non-autistic people do, and also autistic people who might not be able to recognize and communicate what they are feeling in a way that is instantly recognizable to non-autistic people. How do you deal with those issues?

DeLoren: It’s interesting that you say that, because I was just working with a teacher on a goal for a student: “She’s going to recognize when something painful has happened to her body on 1 out of 5 occasions.” That kind of thing.

It is actually a goal that we write, because it’s a skill that we have to teach our students that I work with, because they don’t have the innate ability. One of the things that I love about the school is that it’s so strengths-based, and you never say never. You never say “this kid is never going to do this,” because, every time you say that, they’re going to come out of the woods and surprise you.

It is a challenge to figure out [how to explain something like] “Ok, you are probably getting upset with me now because, a minute ago, you slammed your hand on the table and it probably hurt, but you didn’t register that it hurt then, but you know something’s off.” With some of our kids, we can have those verbal conversations.

For those kids who don’t have that awareness yet, or that same verbal comprehension to be able to understand those kinds of conversation, it does end up being more about how we can structure the environment so that it’s as safe as it can be. And then, from there, how can we as staff and teachers help these kids if they do something that does hurt their body and they start getting dysregulated? How can we give them strategies to help them bring their body back to a good place? We work a lot with sensory strategies to calm the body, but we also work with regulation programs to teach those skills of how to recognize that your body is getting pretty ramped up and how can you bring it back down.

Kurchak: As an autistic person who worked in the fitness industry, I’ve often wondered if our repetitive movements and stimming could lead to repetitive strain injuries later in life. Is this something that you’ve noticed or considered at all?

DeLoren: That’s a good question. I personally haven’t seen them yet, but I also work with kids. As you age, you would probably get into those a little bit more. If you’re working with a geriatric autistic population, then that would probably show up a little more frequently.

I have a lot of guys who jump around on their toes a lot, and I love seeing how their musculature has developed. I have one guy who is always bouncing on his toes and his arms are scrawny and his legs are like … he never misses leg day. He has such defined musculature in his legs because of that type of stim and I do wonder if it’s… this is all hypothetical, because I have no research on this, but I do wonder, if it’s a behavior that started in childhood, if he developed the musculature to support that, maybe that could actually prevent you from getting a repetitive strain injury. But if it’s something that you start later in life, after your body has finished developing, maybe that would compromise it?

But I don’t know about that, because a couple of our kids can do these hypermobile things with their fingers and I haven’t seen them get dislocated. But again, I’m working with pediatric populations, so arthritis, that kind of thing where you have repetitive wear and tear on the joint, that’s going to show up later in adulthood. So I don’t know. That’s a really good question.

Kurchak: Something else I’ve noticed in fitness is that most training programs developed for autistic people are based around a fear of obesity, and that any other goal or need that isn’t specifically about making autistic people thinner tends to be ignored or pushed to the side. Is this something you’ve seen at all in OT?

DeLoren: I feel like that’s a thing in health care in general right now. Any time there is any potential risk of obesity, everybody just loses their minds and focuses on that instead of any actual health concerns. It’s awful that we are seeing that kind of fat shaming progressing into our work with children, who should be told that they are beautiful and wonderful all time. Kids grow best when they receive positive feedback as opposed to “ooh … I’m really scared that you’re gonna get fat!” That’s really awful to hear as a child. It’s awful to hear as an adult, but especially as a child.

I do think that the fitness industry is hyper-concerned with obesity, and we do see that concerned mirrored in the medical field as well. I am predominantly in the education field, as most of my time is spent at a non-public school specifically for student with autism. A lot of concerns in education right now in terms of obesity are that kids are sitting for too long and not moving enough. This is an issue that we've pretty much brought upon ourselves with the ways we've set up our schools. P.E. times and recess times have been cut or pushed back as an increased focus on academics has surfaced. The long-term issues of this type of sedentary lifestyle include obesity, but plenty of short-term issues also emerge. We see increased distractibility, behavioral issues like not following directions or acting out, emotional regulation issues like aggression or crying, and poor performance on academic tasks (including testing). In our quest to address obesity in schools, we have the opportunity to correct all of these other issues that we're creating as well.

The school I work at is kind of unique, in that its goal is for our students to live engaged and productive lives. Instead of having several hours of sitting work for our high schoolers, they change work stations every fifteen minutes, so there's a walking break built in right there. They have 30 minutes of PE every day, not just once or twice a week. They go for trail walks (30-45min) every other day, and they go on community outings for several hours every week. They have access to three different play structures, four hammocks, and bikes whenever they need a break. They participate in campus clean up every week and we have seasonal gardening activities as well.

While these activities aren't all traditionally "exercise" they do get our students out and moving around. We refer these types of activities as "heavy work" and are a way to help our students regulate their level of alertness and their emotions, but they have the added benefit of being physically healthy on top of being emotionally healthy. If more schools were able to incorporate this kind of hands-on learning approach, we would probably see a decrease in our obesity rates because we'd be establishing healthy movement habits right from the start.

So many of the clients that I work with are very picky eaters and they’ll only eat certain foods. So I think that, from the OT perspective, we come at it less from a fear of obesity and more from a nutritional standpoint. Are they getting the vitamins and minerals they need? I do see the concern with the nutritional aspect because of those super hypersensitivies to different textures and different flavors and that kind of thing. There is a pretty limited diet that some of our kids have. And so many of our kids can’t swallow pills, so they can’t take vitamins.

Kurchak: Swallowing pills is still a challenge for me.

DeLoren: It’s a really big challenge.Thankfully we have gummy vitamins, which are really good for a lot of our kids because that chewiness is actually really good for proprioception in the jaw.

Kurchak: I’m actually taking gummy vitamins now.

DeLoren: They’re great! And they make them for adults now. Which is really good, because we’re seeing that, with those types of supplements, we can start getting more of that nutritional part, that little piece of the puzzle can start to get worked out. There is starting to be more research into gut issues with autism, and whether or not you’re able to process the stuff that you’re taking in. How you’re processing it seems to be different if you have autism vs if you don’t have autism.

I personally have not read a ton of research on that yet, but I do know that it is being conducted right now.  I think that we’ll probably see some more research into that and the viability of those things in the next few years.

Kurchak: You mentioned earlier that you were recently certified as a yoga instructor. Has that training influenced your OT work with autistic people at all?

DeLoren: I think it definitely has. I frequently incorporate breathing exercises into my self-regulation training with my kids. I have one kid in particular where yogic breathing and diaphragmatic breathing, in addition to pursed lip breathing, helps him calm down a lot. And when he can’t get into that, he will engage with me doing basic stretching exercises because that gets him into his body a little more. This is a kid who struggles with anxiety to the point where he will walk into a room and we can’t tell what it is that has set him off, and he can’t communicate it with us, and he will just start bawling and yelling and running all over the room because he can’t sit still because something has gone wrong. His anxiety’s through the roof. So the fact that he can, in that space, where the nervous system is totally fight or flight, be able to still have that awareness to breathe through pursed lips—and that brings him down—is huge.

Also, part of my training as a yoga instructor incorporated a little bit of Thai massage. Thai massage is also called lazy man’s yoga, which is really wonderful for my guys who can’t their bodies into a position, but I can help them get their bodies into a position and I can keep my body safe moving their giant limbs around. Because I’m working with six-foot-tall guys who are twice my weight. So I can keep my body safe when I’m helping them get into those positions that are going to help open the hip, or are going to open up a little into the shoulders. It’s going to get their hands to work a little better so that they can do academic work, that kind of a thing.

And, for my kids who are more aware of the outside world and their interactions with people, I do talk a lot about kindness to yourself and thinking good thoughts for yourself before you can treat others with kindness. A couple of my kids have stims where they’re hitting their heads or [other] self-injurious behavior and, whenever I’m trying to encourage them to stop, I remind them you have to be kind to yourself to start with. That’s the baseline. The important part is that you love you. And then you can love other people.