My Experience as an Autistic Pole Dancer - StageLync
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My Experience as an Autistic Pole Dancer

In an extroverted space, circus performers and students with differing needs may find themselves standing on the sidelines. Movement artist, pole dancer, and educator Jody Ryker wants to help other autistic performers feel safe inside the circus ring. Honoring Autism Awareness Day, Jody shares with us her passions, challenges, and triumphs.
Photo: Sam Reeves

“Aren’t you happy?! Why aren’t you excited?!” my coworker at my local circus school exclaimed to me after we had just received some good news. I don’t quite remember what we had just heard— maybe it had to do with a performance or competition opportunity, but I do remember this conversation. I was excited! But then I felt frustrated. Everyone else in the room was jumping up and down, laughing, shouting, smiling. I was standing off to the side, an other, silent, and still. What’s wrong with me? Why can’t I interact and express myself like everyone else? I’ll never fit in. They must think I’m such a weirdo. I was bombarded with thoughts like these and felt an inexpressible loneliness. This memory is just one of countless interactions like this throughout my entire life. I didn’t know it at the time, but my inability to express myself nonverbally was due to my autism.

Social issues are one of the defining features of autism, and the DSM (Diagnostic and Statistical Manual) lists “Persistent deficits in social communication and social interaction across multiple contexts” as part of the diagnostic criteria. I have struggled to socialize and connect with others for as long as I can remember. I am a twin, and my twin was my only friend for a good portion of my life. I desperately wanted to have other friends when I was young, but I stressed so much about behaving “appropriately” and knowing what to say that I would usually talk myself out of initiating anything. I also recall having conflicting feelings when others would begin a conversation with me – I was happy that someone was talking to me, but I was so anxious that it was painful for me, and I’d end the conversation as quickly as possible. I was diagnosed with anxiety as a young adult, but it took many more years for my autism diagnosis, even though my social anxiety stems from my autism.

When I was a child, and even as a young adult, I really had no idea what autism was. I had seen images of young kids throwing tantrums and heard stories of non-speaking children who would rock back and forth and mimic noises. I get the feeling that nobody else in my childhood knew about autism either, otherwise I like to believe they would have tried to get me help sooner. During the pandemic, I lost almost all my performance and circus teaching jobs, but the upside was that I actually had time to research autism. I was surprised to learn that autism would explain so much about me and my struggles.

What is Autism?

Autism, also referred to as autism spectrum disorder (ASD), is a neurodevelopmental disorder. It appears early in childhood and there is no cure. If someone has autism, their brain develops in a different way than someone who does not have autism. If you do not have autism, your brain does not work the same as mine, and our experiences of the world may be very different due to this.

The best definition of autism that I have heard is that it is a collection of disorders. I don’t really like to use the term “disorder,” as there are parts of my autism that I cherish, but there certainly are aspects of my autism that cause difficulties for me socially and in my jobs. There’s a common phrase that is used in many autistic educational spaces: “If you’ve met one person with autism, you’ve met one person with autism” by Dr. Stephen Shore. This statement is a bit silly since it is a tautology, but I like that it emphasizes the importance of learning about many autistic people if you really want to understand autism. Because autism is a collection of disorders, not every autistic person has every one of these disorders, and each disorder may manifest in a distinct way and at a different intensity. I think this graphic really sums this up well.

Graphic from https://themighty.com/2020/03/autism-spectrum-wheel/

To be diagnosed with autism, a person must exhibit social and repetitive behaviors to an extent that it limits their ability to function in society. Repetitive behaviors can be obsessions, rituals, or fidgets, for example. The DSM includes “Restricted, repetitive patterns of behavior, interests, or activities” as part of the diagnostic criteria for autism.

Many autistic people also have sensory processing disorder (SPD). This means that many autistic people are either hypersensitive or hyposensitive in regards to sensory data. For example, some autistic people are hypersensitive to sounds, and background noise can be painful and overstimulating. These sensory issues can have a huge impact on how comfortable or functional an autistic person can be in certain spaces. I’ll get into my sensory issues in the next section.

Stimming is a common behavior among autistic people, likely due to sensory issues, however, non-autistic people stim too. Stimming refers to “self-stimulation.” It feels good to stim and it helps autistic people regulate themselves. Stims can look like rocking back and forth, humming to oneself, flapping hands, for example. Stims often depend on a person’s sensory sensitivities. Unfortunately, stimming in public is often looked down on even though it is necessary for autistic people to do this.

If you really want to know what autism is, I highly suggest learning from autistic people who choose to share about their experiences. Listening to one autistic person is not enough because the autistic experience can be so different. I began learning about autism by listening to Paige Layle, the podcast The Audacious Autistics, and following Instagram accounts by autistic people such as @neurodifferent.

My Autism

I’ve already shared a bit of my experience with social anxiety. Many autistic people get anxious in social situations because they’ve had so many negative social experiences. In fact, there is some evidence to suggest that these repeated, negative social interactions (including bullying and harassment – autistic people are more vulnerable to these things) may lead to PTSD (post-traumatic stress disorder) or CPTSD (complex post-traumatic stress disorder). I am at the beginning stage of fully understanding my diagnosis, but the person who diagnosed me as autistic stated that I exhibit symptoms of trauma.

I have many social deficits. One that may be more observable is my lack of facial expressions. For people who know me, this might be hard to believe, but I actually have improved in this matter quite a bit. Early on, I realized that I was not displaying my emotions on my face, and I studied people (like my mom, who I identified as exemplary in social situations) to learn how to smile and make other expressions. On a related note, I also struggle to read other people’s facial expressions. For these reasons, I highly prefer literal communication. I prefer it when people ask me how I’m feeling and I’ll also ask them how they’re feeling. I make a habit of generally telling people if I’m not happy about something. If I don’t say anything, I’m probably happy with how things are going. I have often wished that other people would make this a habit as well, as I’ve frequently felt like I was missing some key information in conversations, and even if I tried to ask questions, apparently I didn’t ask the right questions, and I still had no idea why the interaction didn’t go well.

Similar to my inability to express emotions through facial expressions, I also do not use my tone to convey emotion. I have been described as a “robot.” I have tried to work on this, but I still find that my voice is more monotone. When my math students have provided me feedback through student reviews, the most consistent criticism that I’ve received is that I appear to lack enthusiasm, despite the fact that I am very enthusiastic about math. I often read and do math in my free time.

I sometimes struggle to recognize faces. When I was used to tutor math as an undergrad, I always made sure to arrive at our meeting location first so my students would have to find me versus me having to recognize them. I have some ability in this matter, but I especially have trouble when I see people out of context or if someone is just an acquaintance. I have often walked by people who know me without acknowledging them. Sometimes these people have told me I was rude. Other times people have shared with me that they just thought I didn’t like them. This makes me sad because when this has happened, I almost always liked the person and wanted to interact.

My eye contact during conversations is different than most people’s. I was made aware of this after a number of people told me they thought I was rolling my eyes at them. I realized that I was not able to look people in the eyes when I was thinking. I practiced my eye contact quite a bit as a teenager, because I thought I wasn’t making eye contact appropriately. Now I am able to maintain eye contact while someone is talking to me, but I still can’t look someone in the eye when I’m talking. It’s overstimulating and distracting to me, likely due to my sensory issues.

I often don’t understand social rules. For example, “small talk” makes no sense to me and I’d rather not participate in it. I used to say that I hated it when the clerk checking me out at a grocery store asked me how I was doing because I had to choose between lying by saying “I’m fine” or telling the truth (saying something like “I’m stressed out” or “I’m depressed”) and being socially inappropriate. I don’t understand social constructs like gender. I really struggle to comprehend any reason why I need to identify someone by their genitals in almost any context. Dress codes seem arbitrary and unnecessary. These are just some examples of social rules that I have trouble following.

I have been described as obsessive. If I like something, I really like it. I have to know everything about it. When I was a child, I went from obsession to obsession, from basketball, to the band the Scorpions (I wrote a book about the Scorpions when I was 12), to roller skating, and eventually to pole dance. While I’ve also been diagnosed with OCD (obsessive compulsive disorder, which is commonly diagnosed with autism), my OCD is tied to my autism. Most of my obsessions are things that help me regulate myself when I’m overwhelmed. It is better for me if others do not try to stop me from doing my obsessions. For example, the only thing that gives me relief when I’m really overwhelmed is working out (usually on the pole). Even though it may seem like I work out too much sometimes, and it does get in the way of work and relationships at times, it is necessary for me to be functional. When I am focused on my training, it may seem like I ignore everyone else. This is not really something I can control. It’s not intentional and it has no reflection on my feelings for those people. If I am interrupted, I may get upset (I’m sorry!).

Related to fixations is having routines. I have learned to adapt my rituals to an extent to accommodate living with others and traveling. However, if I’m not allowed to go through my routine, I feel extreme stress. I have forced myself to do this at times because I thought that I was being unreasonable, but now that I know I have autism, I know that my need for these routines is necessary for me to be comfortable considering that my brain works differently than most people around me. For example, I get really stressed out if I can’t take a shower at certain times during the day. Sometimes this can seem disruptive to others if I’m in a group of people. In general, I usually plan to take care of my own needs on my own schedule and I will join others wherever they are when I’m done with my routine. It is helpful for me if people don’t make a big deal about this and let me take care of my own needs.

I have two more pronounced sensory issues. I am hypersensitive to light. I need sunglasses when I’m outside or around bright lights. If I don’t have sunglasses, it’s painful. My eyes have even swollen shut just from the sunlight before. Before my autism diagnosis, I had no idea what was going on. I thought that it was possibly due to my poor eyesight or a genetic condition. Now it is clear to me that it is from my autism. While this sensory issue causes me discomfort at times, it can also be beautiful. I stim sometimes by staring at things that I find “visually stimulating.” I actually started using this term years before I knew I was autistic, but I knew that I enjoyed looking at colorful things (and wearing colorful clothing) or detailed things. I have many memories of going into my parents’ backyard as a child and staring at the plants or moss. I loved it, it was so pleasing to me. I also would create detailed works of art in my head. To my frustration, I was never able to physically produce these works of art. Many autistic people can create things completely in their heads. Another example of this is that I can create pole, aerial, and acrobatic combos without actually doing them physically. I can run through these combos in my head to determine if they will work or not. Temple Grandin is a very well-known autistic person who created machinery in her head and could also test whether it would work by just testing it in her mind.

My other sensory issue is not a good one. It might sound beneficial at times, but it’s damaging to me. I do not process pain the way other people do. I am likely tactile hyposensitive. I have been hurt many times by other people and even by myself because I didn’t feel enough to know that I was being hurt. For example, I can train for hours and then suddenly I’ll see that there’s a patch of skin completely missing from a body part (yes, I’ve really trained through this and only became aware after seeing it). I was burned at my physical therapist’s office because I didn’t feel that the heat pad was too hot. I recently have been going to a physical therapist for a chronic wrist injury, and I found myself unable to tell my therapist when something hurt because everything he did just felt the same to me, much to his frustration. These are just a few examples of how this affects me. I also have a stim related to tactile stimulation: I really like to touch soft or fuzzy things like pillows, or even repetitively pet my cat.

Dyspraxia is a common disorder among autistic people and it is related to sensory processing disorder. Someone with dyspraxia may look uncoordinated. This may sound surprising, but I have dyspraxia. While I have trained extensively in movement, I still find that I’ll trip over my feet, I bump my hip bones into corners all the time, and I have poor hand-eye coordination. It’s frustrating and embarrassing. I often feel like a dork when I trip and people make fun of me. I can’t count how many times I’ve tripped or bumped into something while I was teaching a math class. In pole competitions, I’ve almost always tripped while just stepping on the ground after completing some impressive pole pass. It’s definitely worse when I’m nervous, but I find myself walking into things even when no one else is around.

I can be forgetful and spacey. I’ll forget to eat and drink water often. This is possibly due to a sensory issue as well as some short-term memory issues. I find it helpful when people remind me about things I have to do. I think the only things that I really remember consistently have to do with the things that I’m passionate about.

There are some common patterns related to IQ and autism. One of mine is called hyperlexia. I was reading books for adults when I was ten. I also was fascinated by words and numbers, and I memorized entire discographies, license plates, scientific names of snakes, and more. I have a photographic memory, and when I was a child, I spent quite a bit of time practicing this skill. One time my dad flipped through a book, read something on a page, and then he turned to another page in a completely different section of the book only to realize he wanted to reread the first page he had seen. The page number just popped out of my mouth. I didn’t really even realize I’d seen it, and we were both surprised. My parents also recently told me that they always knew they could rely on me to recall things like parking space numbers.

I am gifted in mathematics. I don’t mean to brag about this, I’m only proud of my abilities that are due to hard work. I had to take an IQ test as a part of my autism diagnosis, and I was not surprised to learn this. I tend to be quite logical, and I have an easy time following instructions precisely. I have observed that many people around me are not as logical. Sometimes this can be very confusing and frustrating for me. When I went to grad school to study pure mathematics, I noticed that I had a much easier time communicating with my peers, and I think that this is in part due to math students being trained in logical thinking.

My Experience as an Autistic Movement Artist

I always loved movement arts. I was especially fascinated by dance. I tried out many forms of dance as a young adult. However, I rarely felt like I fit in, and now I know that is because my brain works differently than most of the people in these spaces.

When I was starting out, some people felt the need to point out that I was klutzy, uncoordinated, or didn’t look like a dancer. I heard statements like these from coaches, fellow students, and even someone I dated. It was hurtful and unnecessary. I was never the kind of student who improved after receiving “tough love” treatment; rather, I’d improve when given clear, constructive criticism. When people said mean things to me, it made it almost impossible for me to participate. If I get really stressed out, I shut down. It feels like I’m moving through water, my brain is melting, and sometimes I can’t even speak because my throat gets so tight. It would have been helpful for me if people didn’t point out something that I already knew I struggled with, especially as I was just beginning to learn a certain movement. Now, I do not really get comments like this much, at least when I pole dance (I like to think that I’ve become a graceful dancer), but people still raise an eyebrow when I trip while walking.

The hardest part for me in pole and circus arts is socializing. I am often othered and do not feel like I’m a member of the group. Artists are often charismatic, loud, and very outgoing. I can easily get overwhelmed in these spaces and find it difficult to participate. People have assumed that I do not care to interact, or that I’m not trying hard enough, or they may make some other negative assumption about me. I have been most successful in spaces where I’m given a chance to speak up on my own terms.

Photo by Tom Jacobs. With acrobatics partner Kyra.

To some extent, I think that having charisma is considered a necessary part of being a successful circus artist. I am sure that I have sometimes not been offered gigs due to my lack of facial expressions. I certainly agree that having a “big character” can make an act more engaging, but I also find that there are other characteristics that I enjoy more when I watch other circus artists and when I take other people’s classes. There is not one way to dance, and everyone will have different preferences on what they like about dance, and I think it’s important to see diversity in instructors and performers. Personally, I find it overwhelming when an instructor is overly enthusiastic, and sometimes it comes off as superficial. I know that this type of persona is useful for many students of movement, but I always hope that studios I visit have an instructor who is a bit quieter (and not overstimulating) and provides clear and literal directions.

If pole dance had not been one of my fixations, I do not think I could have continued for long. I really only was able to survive all of the social miscommunications, frustrations, and criticisms because I love pole dance, and it’s what I think about and do during almost all of my free time. It also helped that I was able to set up my own equipment and practice on my own. I know that many people prefer to train with others, but I really enjoy training on my own so I can focus on my goals and development.

Because pole dance is one of my obsessions, I have made it a priority to learn as much about it as I possibly can. I also really enjoy talking about everything I know about pole, and I think this is something that has made me a successful instructor.

I believe that I have been able to work and participate in society for so long without knowing about my autism largely due to my ability to mask. Masking, in terms of autism, is essentially hiding one’s autistic traits and pretending to be neurotypical. Autistic non-males are generally better at masking than autistic males, and this is partly why autistic non-males are often diagnosed much later or never. Masking, while it might seem like a good thing, is detrimental to autistic people. It is exhausting and can lead to burnout. I often mask while I teach pole because I do not know if it will be a safe space for me to show my autism. Now that I know about how harmful masking is, I’m trying to do it as little as possible. I prefer to teach more advanced classes where I am familiar with most of the students versus teaching a class full of brand new beginners that I’ve never met before. In the latter case, I know that I’ll have to motivate and excite these new students, and I’m always very worried about making a good impression. This results in me masking the whole time and feeling completely drained after a sixty-minute class.

Diagnosis

I have known that there is something going on with me for quite a while. I tried to share some of my difficulties with partners, friends, family, teachers, doctors, and therapists, but due to the lack of awareness of autism (and likely due to the fact that autism is under-diagnosed in non-males), none of these people ever suggested that I might be autistic. A handful of other people (not anyone close to me) mentioned to me that I might be autistic. I never really took these people seriously because of my own lack of awareness. I’ve also noticed that many people tend to treat those who excel at math as highly unusual, and I wondered if they were just saying this because my abilities in math made me seem alien to them.

During the pandemic, I finally found myself at a point in my life where I had free time, a supportive partner, health insurance, and I knew I was about to have a breakdown if I didn’t get help. Now I know that I was experiencing “autistic burnout.” So I sought out the services of a psychiatrist.

Sadly, it still took nine months to get diagnosed. I talked to my psychiatrist about what I was experiencing, and she quickly diagnosed me with depression, anxiety, and OCD. At this point, autism was finally on my mind. I researched autism extensively, and after several sessions with my psychiatrist, I brought up that I might be autistic. I don’t think she knew much about it, but she seemed to think it could describe me, and she initiated the process of finding a neuropsychologist to diagnose me.

It took almost six months to find a neuropsychologist relatively close to where I live (still about an hour’s drive away), who also took my insurance, and who was accepting new clients. The process of calling many different people to try to get an appointment was exhausting and disheartening. I almost gave up. The assessment itself is quite expensive: upwards of one thousand dollars. I was so desperate for help, however, that I just knew I needed to do it to survive. It makes me sad that many autistic people will not be in a place to get the help that they need because this process is so expensive and difficult.

I connected with the neuropsychologist that I went to right away. If I had not felt somewhat comfortable with this psychologist, the process would have been much harder to complete. I’m very grateful that she made my experience as easy as possible. With that being said, I had to fill out countless forms and questionnaires (some with upwards of three hundred questions), go through a Zoom intake interview, attend a 5-hour in-person assessment including an IQ exam, provide personal references who were then interviewed (my partner, my mother, my psychiatrist, and my therapist), and finish up with a feedback session. It was completely overwhelming. I could not have finished it without the support of my partner.

Looking Forward
Photo by Frank, @scz_photo

I felt a wave of relief when my neuropsychologist told me that I am autistic. It was validating. It explains many of my difficulties. She offered me support in getting work accommodations and suggestions for my sensory difficulties. While the process was overwhelming, I am so grateful that I was able to go through it, and now I can get the help that I need.

I am also excited to meet more people like me. I have had so many issues communicating with neurotypical people (people without developmental issues) and feeling excluded from many spaces (because most spaces are made for neurotypical people). Now I feel like there is a huge community of autistic people who are more likely to be understanding of my difficulties and will probably be easier for me to communicate with.

As an autistic performer and circus artist, I want to create a space for other autistic people to feel safe participating in circus arts. Pole dance has been so helpful for me personally, and I want to share it with other people with similar difficulties. I look forward to being an activist for autistic people in the circus arts world and spreading awareness. If you are autistic and interested in circus arts, I would love to connect with you!

References & Further Reading
Autism Spectrum Disorder (ASD), Diagnostic Criteria. https://www.cdc.gov/ncbddd/autism/hcp-dsm.html
The Autistic Brain. https://www.psycom.net/autism-brain-differences
SPD and Autism. https://sensoryhealth.org/basic/co-morbidity?k_clickid=%2F#spdandautism
Temple Grandin. https://www.templegrandin.com
Subtypes of SPD. https://sensoryhealth.org/basic/subtypes-of-spd
What is Hyperlexia? https://www.webmd.com/children/what-is-hyperlexia
Autism Masking: To Blend or Not to Blend. https://www.healthline.com/health/autism/autism-masking
Why Many Autistic Girls Are Overlooked. https://childmind.org/article/autistic-girls-overlooked-undiagnosed-autism/

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This article was originally posted on the artist's blog Pole Diversity.

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Jody Ryker
Performer, Teacher, Dircetor -United States
Jody has been training in circus arts since 2011. They specialize in pole dance, aerial hoop, and acrobatics. Jody has performed around California at music festivals, events, variety and circus shows, including the Santa Cruz boardwalk, California's Great America, Northern Nights, and the SF Craft Spirits Festival. Jody enjoys choreographing dramatic acts that showcase their aerial and pole creations. In 2015, Jody founded the performance group Pole Diversity (www.polediversity.com). They have directed, produced, and choreographed three hour-long shows as well as choreographing three sets for Santa Cruz's national dance week event. Pole Diversity's mission is to share pole dance in a circus setting and to dispel common misconceptions about pole dance. Jody currently teaches at Steel & Grace and Cirque, Tumble, and Cheer in Santa Cruz.

Editor's Note: At StageLync, an international platform for the performing arts, we celebrate the diversity of our writers' backgrounds. We recognize and support their choice to use either American or British English in their articles, respecting their individual preferences and origins. This policy allows us to embrace a wide range of linguistic expressions, enriching our content and reflecting the global nature of our community.

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Jody Ryker

Jody has been training in circus arts since 2011. They specialize in pole dance, aerial hoop, and acrobatics. Jody has performed around California at music festivals, events, variety and circus shows, including the Santa Cruz boardwalk, California's Great America, Northern Nights, and the SF Craft Spirits Festival. Jody enjoys choreographing dramatic acts that showcase their aerial and pole creations. In 2015, Jody founded the performance group Pole Diversity (www.polediversity.com). They have directed, produced, and choreographed three hour-long shows as well as choreographing three sets for Santa Cruz's national dance week event. Pole Diversity's mission is to share pole dance in a circus setting and to dispel common misconceptions about pole dance. Jody currently teaches at Steel & Grace and Cirque, Tumble, and Cheer in Santa Cruz.