“Excuse me, do you mind me asking what that’s all about?” the man at Barnes & Noble asks me as he glances up from his magazine.
“What what’s all about?” I reply
“It’s just something I do.”
“But why do you it?”
“I’m on the autism spectrum”
The truth is that as soon as the guy asked “What’s that all about?”I knew exactly what he was referring to. People question my pacing on a regular basis. Last month in the coffee shop a woman came up to me and asked if I was okay. When I replied that yes, I was okay, she gave me an incredulous look. The month before that a waitress asked my mom if she was watching me.
You’d think that after 31 years of being questioned about my pacing, fidgeting and flapping I’d have gotten used to it by now. And yet it upsets me every time. When I walk away from that guy I still feel upset. I can feel tears coming and I become lost in thought.
I’m just so sick of being asked that question and I never know how to answer it. How do you explain to someone why you do something that comes as naturally to you as breathing? How do you explain a need and an urge that has been with you for as long as you can remember?
What I really want to do is ask those people the counter question of “Why don’t you pace?” The vast majority of the population does not pace, flap or fidget to the extent that I do so that would not be considered a valid question in the eyes of most people but in my eyes it is a perfectly valid question. From a physiological perspective, the fact that other people don’t engage in those behaviors is as utterly incomprehensible to me as the fact that I do engage in those behaviors is to them. I do not know what it is like to not feel the constant urge to pace, fidget and move. I will never know what that is like.
There are a few theories as to why people on the autism spectrum tend to engage in what is called stereotypic or self stimulatory behavior (I refuse to call it stimming because I hate that word just like I hate the word selfie. I have issues with neologisms that remind me of masturbation.) One theory is that it provides sensory stimulation to a person who is hyposensitive. Because of some dysfunctional system in the brain the body craves stimulation and engaging in those behaviors arouses the nervous system. The behaviors may release beta-endorphins in the body that provide internal pleasure.Another theory is that these behaviors are used to calm a person who is hypersensitive. They engage in those behaviors to block out an overstimulating environment that is sending them in to a state of sensory overload. (Information courtesy of autism.com.)
I’m pretty sure I fall in to the first category but most people think I pace because I’m anxious. Sometimes I do pace when I’m anxious but I also pace when I’m happy, excited, angry, contemplative or experiencing various other emotions. Intense emotions can exacerbate it but it is not primarily driven by emotions. It’s a basic physiological need. I’m tempted to compare it to eating and sleeping but that’s not the best comparison. I can go much longer without eating or sleeping than I can without engaging in self stimulatory behavior. There really is no good comparison.
If I have this much trouble articulating my reasons for my behavior as an adult, you can imagine how much trouble I had articulating them as a child. For most of my childhood I knew nothing about dysfunctional nervous systems or beta endorphins. For most of my childhood I did not know what kind of disability I had. Therefore when asked why I flapped, paced and fidgeted, I couldn’t give much of an answer beyond “I don’t know. I just like to do it.”
Sometimes I was not just questioned about my behaviors. I was judged and ostracized for them. I was treated rudely and cruelly because of them. Sometimes I had trouble telling the difference between rudeness, cruelty, curiosity and concern.
I remember when my friend’s mom decided my friend and I shouldn’t play together anymore because she was afraid the flapping might be contagious. I remember when a girl came up to me on the playground and said “Why are you flapping, little bird?” Then she proceeded to run around in circles flapping her arms in mockery of me. I remember when another girl called me a twitching bitch. My brother was usually kind to me but when he wanted to hit me where it hurt, he would bring up my stereotypic behaviors, tell me how weird they were and that they indicated I had serious problems.
I was a curious child who had a habit of taking the reports written about me by doctors, teachers and psychologists out of my mom’s filing cabinets and reading them. The section of the reports that talked about how I flapped, paced and touched my lips for most of the time I was being observed made me cry. Of course those reports were being written in an effort to help me but at the time I did not understand that. I just saw it as yet another person complaining that my way of being was unacceptable and this time it was immortalized in writing.
My stereotyped behaviors always made me feel abnormal and isolated, like I stood out from everyone else in a bad way. I did not feel accepted or respected by my peers.Of course aside from that, being on the autism spectrum comes with all kinds of other problems, differences and deficits so unsurprisingly I was a shy kid with low self esteem.
Fortunately, while I had many deficits, I also had some strengths. I discovered one of those strengths when I was enrolled in a theater summer camp. I tended not to talk or interact much with my peers but when I was put on stage I came alive. When I performed comedy improvisation I would have the audience laughing hysterically and when I performed dramatic scenes I’d move the audience to tears. My instructors frequently told me that I was one of the most talented campers they had ever seen and my peers often complimented me on my acting abilities as well. For once in my life I felt like I stood out from my peers in a good way, that I was respected and admired by them. Then one day a fellow camper says to me “My mother thinks you’re a very weird person. She’s seen you jumping around in front of your house. She says you have Tourettes.”
I actually was diagnosed with Tourettes at one point but that was not an accurate diagnosis. A Tourettes diagnosis requires the presence of vocal tics and I’ve never had any vocal tics.The doctor who gave me that diagnosis was just looking for a way to explain my stereotyped behaviors and Tourettes was the best he could come up with. ( I really feel for anyone who has Tourettes. I can only imagine how hard it must be to have to cope with vocal tics in addition to physical ones. It’s also considered socially acceptable to mock and poke fun at Tourettes in a way that it’s not considered acceptable to mock most other disabilities. When I did improvisational comedy the audience would ask the actors to impersonate someone with Tourettes. I can only imagine what the reaction would have been if they’d been asked to impersonate someone with autism or Down Syndrome.)
I was not going to be diagnosed as being on the autism spectrum because back then autism was thought of differently than it is now. There was no way an autism spectrum diagnosis would even be considered for someone who spoke and wrote as eloquently as I did.
Now I need to be evaluated so I can get an official autism spectrum diagnosis because the Division of Developmental Disabilities has decided I “just have a learning disability” and that does not entitle me to services. I do not meet some of the diagnosis criteria that is typically associated with autism but I think I’ll be able to get an autism spectrum disorder diagnosis because of the stereotypic behavior. The flapping, pacing and toe walking that I engaged in as a little kid and still engage in now are classic autism.
The terms high functioning and low functioning are controversial but I would be classified as being on the high functioning end of the autism spectrum. I know there are people who are as high functioning as I am and who engage in self stimulatory behavior to the extent that I do but I have never met those people. When I was at a residential program for young adults on the high functioning end of the autism spectrum there were a few residents who engaged in sterotyped behaviors but most of them did not and no one did the kind of things I did with the frequency that I did them. Some of them were as baffled and annoyed by my behaviors as neurotypical people tend to be.
Almost everyone, even neurotypical people, engages in self stimulation of some kind such as foot tapping, hair twirling or nail biting but when you have the kind of self stimulatory behavior that is generally considered to be normal or socially acceptable in form and degree, you’re going to have a different life experience from someone like me.
When that guy at the bookstore asked me what my pacing was about I had been reading a novel. The main character was a social outcast who was often perceived by others as being weird, crazy or dangerous and I was thinking about how much I could relate to that feeling but before I was reading the novel, I was looking at the books on autism, as I often do when I go to Barnes & Noble. When I check the table of contents of those books I usually have trouble finding the section that addresses stereotypic behaviors. When I do find it,there usually isn’t more than a paragraph or two about it. If the book focuses on high functioning autism, the section on stereotypic behaviors may be nonexistent.
When I read the proposed treatments and solutions for stereotypic behaviors my reaction tends to either be “Been there, done that” or “So glad I didn’t go there and do that.” I’ve been on a lot of different medications. Some of the medications have reduced the sterotypic behaviors and some have increased them. None have eliminated them. I do try to channel my energy through exercise. I have a trampoline in my backyard. It’s great and I love it but it’s not enough to stop me from engaging in stereotypic behaviors when I don’t have access to a trampoline.It’s been suggested that people only engage in stereotypic behaviors in private. Well, sometimes life requires you to be in public for long periods of time and you just can’t go that long without feeling the urge to move around. Sometimes privacy means not just the privacy of your own home but the privacy of your own room because you live with people who find your pacing unacceptable. One of the books I read suggests dealing with kids who exhibit stereotypic behaviors by attempting to help them engage in imaginative play and use language instead. I’ve never suffered from a lack of imagination and I’ve never had a problem with language so that obviously doesn’t apply to me.
Applied Behavioral Analysis is another thing that is controversial in the autism community. I hear ABA has worked wonders on some children with autism and I find it unfortunate that some of the effective interventions for autism spectrum disorders were not around when I was a small child but I can’t imagine I would have enjoyed or benefited from ABA if it was used to address my stereotypic behaviors. I can’t imagine responding well to having suppression of my natural urges exchanged for a handful of Skittles. The autism.com website says that researchers have found that stereotypic behaviors interfere with learning and attention. Speaking for myself, I can say that what interferes with attention more than my stereotypic behaviors is,well, my inability to pay attention. The article goes on to say that interestingly, these behaviors serve as positive reinforcers if an individual is allowed to engage in them after completing a task. I’m glad the researchers find it interesting but interesting is not the word I would use to describe having my natural behaviors turned in to positive reinforcers.
It’s been suggested that people who have stererotypic behaviors that are problematic substitute those behaviors with behaviors that are more socially acceptable. The sad thing is that the kinds of behaviors I engage in are the ones that the autism experts generally deem to be socially acceptable but I’ve encountered many people in my life who find them unacceptable. A suggestion I saw given was that a kid who bit his arm should chew on a rubber tube instead. When I was in school I would sometimes twirl a rubber band in class. One day my math teacher said to me in front of the whole class “Why are you always playing with that string? It drives me crazy!”
Yet another controversy in the autism community is whether or not people on the autism spectrum should be allowed to engage in self stimulatory behavior. I have issues with the word allowed being used in this context because I’m not sure anyone has the right to make such a decision for someone else, even when we’re talking about children. Self stimulatory behavior is often not entirely under an autistic person’s control and sometimes the control they have over those behaviors is quite limited if it’s even there at all. Obviously I’m biased on this matter but as long as they’re not harming themselves or anyone else, I think people on the autism spectrum should be allowed to engage in self stimulatory behaviors.
There are people who are annoyed by my pacing and fidgeting but I don’t consider being annoyed to be the same as being harmed. Some people say I need to refrain from engaging in those behaviors because it makes them uncomfortable. What about how uncomfortable it makes me to not be able to engage in those behaviors? Some people on the autism spectrum have sensory issues that cause them to be really bothered by the kinds of noises, smells,sights, textures etc, that they encounter on a regular basis. Should the people who engage in behaviors that aggravate an autistic person’s sensory issues cease the activities they need or want to do whenever the autistic person is around?
I have some control over my stereotypic behaviors and I’m willing to try to tone them down or do them somewhere else if it’s really bothering someone but I don’t have complete control over them. Sometimes I engage in them without thinking about it, especially if I’m intensely thinking about something else. If I’m thinking happy, positive thought it sucks to have my good moment ruined by someone calling me out on my pacing and if I’m having negative thoughts it sucks to have my bad moment made even worse. Sometimes at a social event people will say to me “You’re pacing. Are you anxious?” Well, if I wasn’t before, I am now.
Unfortunately cruelty and mockery are not limited to schoolyard bullies. I’ve had adults who are old enough to be grandparents mock my movements and tell me I should be institutionalized because of them. Sometimes they so very helpfully inform me that it’s not something normal people do. Those people are essentially congratulating themselves on being born with a nervous system that is wired differently than mine is. I had no choice in the kind of brain or nervous system I got and if I did have a choice I would never have chosen a dysfunctional kind that subjects me to ridicule.
I don’t feel too sorry for anyone who is annoyed by my stererotypic behavior or the stereotypic behaviors of anyone else on the autism spectrum. In fact I envy them. I envy them for their ability to walk away from me and my annoying stereotypic behaviors and then not have to deal with them for a while. I do not have such a luxury. I envy them that the worst they’re going to feel is annoyed for a short period of time, while I’ve gotten to feel hurt, rejected, defective, isolated, alienated and ostracized my whole life. I don’t envy the people who mock and disparage me for my behaviors too much though because they are being narrow minded and they are being cruel and I do not aspire to be narrow minded or cruel.
Some people say that autism spectrum disorders are not in and of themselves painful or problematic. It’s the having to live in a world that does not understand, accept or accommodate autistic people that presents the problem. This is true of my stereotypic behaviors. In and of themselves they are pleasurable but the reaction I get to them causes me emotional pain. When from an early age you are told that your natural way of being is weird, abnormal, annoying, unacceptable, unfathomable and in need of change it damages your self esteem and your self image in a way that can never be be repaired.
Anyway, back to the bookstore. As I’m thinking some of these thoughts and tearing up, what am I doing? Pacing. I decide to go outside and call my mother. I certainly wouldn’t get any sympathy or understanding on this issue from my father. On the way to the bookstore he told me that I needed to stop all my pacing and twitching because if the people at the bookstore saw me do that they’d think I was an escaped mental patient and would throw me in an institution. I told him I didn’t think it would be legal to do that.
There are no legal regulations on people making or asking rude or hurtful comments or questions though. I’m not sure why that guy asked me that question. Maybe he was an asshole, maybe he was just curious, maybe he was worried that there was something wrong with me, maybe he was worried that I was pacing for some nefarious reason, maybe he just wanted to talk to me, maybe he didn’t realize how upsetting I’d find such a question, maybe he was on the autism spectrum himself. Who knows. If there’s any benefit of the doubt to be given it’s usually best to give it but sometimes regardless of the other person’s intentions, the result is the same. I feel embarrassed and uncomfortable. I’ve received another reminder that I just don’t fit in in society, that people think I’m strange, that they find my behavior unsettling and questionable, that I’m being watched, judged and wondered about.
When I call my mother she doesn’t pick up so I decide to go back inside and force myself to sit on a chair. That way I won’t pace. A few minutes later my mom calls me back. She can hear that I’m upset and asks what happened. I begin to tell her but decide this is not a conversation I want to have in front of everyone so I go back outside.
“A guy asked me why I was pacing and I didn’t know what to say.”
“Just tell him you’re on the autism spectrum.”
“I did tell him that but I don’t like having to divulge my disability to a stranger.”
“It’s nothing to be embarrassed about. If you tell people that they’ll feel sorry they asked.”
“He didn’t say he was sorry.”
“I’m sure he really was sorry. People just feel awkward when you tell them that and they don’t know what to say either.”
I go to the bookstore frequently. It’s one of my favorite places and I tend to spend long periods of time there. That’s where I tend to get lost in thought and lost in books. Hence, I tend to pace a lot and get a lot of looks from people. I’m not the only person who comes in to that bookstore with some aspect of their appearance or behavior that deviates from what is typically perceived as the societal norm. I see men wearing dresses, people with green hair, people with missing limbs, people in wheelchairs, people with service dogs, people who shout, people who talk to themselves, people who repeatedly utter non-language vocalizations, people who make unrecognizable hand symbols etc, I would not question any of those people about their appearance or behavior but I know others would. Some people wouldn’t see my pacing or fidgeting as comparable to the differences of those people but others would.
It seems apparent to me that some of those people have some sort of mental illness or disability but sometimes the criteria for what even qualifies as a mental illness or disability is subjective and ideas about that change among health professionals and among society. Ideas about what is considered normal, healthy behavior and what is considered abnormal, unhealthy behavior , what behavior should be accepted and tolerated, what behavior should be condemned, what behavior should be addressed and modified, are also subjective and subject to change.
Not everyone in my life has been intolerant or bothered by my sterotypic behaviors. Some people are tolerant and understanding. Some people even find them kind of endearing.
The conversation with my mother turns to an upcoming author event at the bookstore and how I’m going to get to it. Concerns are expressed about me navigating public transportation, locking the doors of the house and spending the night alone. I realize that it’s not really normal, healthy or desirable for someone my age to be struggling with issues like that even though such struggles may not be uncommon for people on the autism spectrum. I feel like there’s hope for those issues though. With some more practice, training and therapy, I can get better at and more comfortable with taking care of myself and exercising some independence. I don’t feel like there’s much hope for the stereotypic behaviors though. I will continue to pace, jump, flap and fidget and other people will continue to make comments about it. I can’t stop myself from engaging in self stimulation and I can’t stop people from being who they are. I just have to figure out the best way to deal with it verbally, mentally and emotionally. It’s not like I can refrain from going out in public or stay away from the best place on earth, the bookstore.
That night at the bookstore before I became absorbed in my novel I was thinking that perhaps I would finish reading that book tonight and then work on a blog post about books I read recently. As I stand outside the bookstore I realize I won’t finish reading my novel tonight and decide that tonight I’ll start working on a different kind of blog post. And then I pace.