The Joys of Autistic Life

Let’s say there’s a dial control that determines how intensely each person experiences the world at any given time. Think of a pain scale at a doctor’s office, or maybe a knob on a car radio.  If most neurotypical or allistic (non-autistic) people’s dials can turn from one to ten, then mine goes beyond ten- mine can turn to eleven or thirteen or maybe even fifteen.  My dial and the ability for it to point past ten is a very integral part of what it’s like for me to live my life on the autism spectrum.  It means that I have the tendency to feel things very intensely: both the good and not-so-good.  This dial affects each facet of my life.  It affects my physical senses, like hearing and taste.  My ability to empathize with others.  All of my emotional states.  Everything about my perceptions and my responses to everyday life can turn past the number ten.

It’s certainly not always easy being autistic. Whether it’s coping with sensory overload, emotional burnout, or feeling like an outsider in a world that’s not built for people like me in mind, I have plenty of not-so-great days.  But being a human isn’t always easy either, and to me, being autistic is as simple and as complex as this: it’s a way of being human. I decided to write this essay about the joys of being autistic after I recently came across the twitter hashtag #AutisticJoy, in which autistic people tweet about things they love about their lives on the spectrum.  We all have good days, bad days, and days in between.  We also all have activities or objects or people that bring us comfort and joy.  In today’s post, I’m going to tell you about a few of my favorite things that make the bad days better and the good days the best as an autistic person.  These are my joys of being autistic, which for me, are also the joys of simply being.

  1. Stimming

Stimming (or self-stimulatory behavior) is something many autistic people do to regulate and express ourselves.  It can be a way to try and turn the dial back down to a more manageable number if we want, or a way to communicate an internal state.  Classic examples of stimming include repetitive motions like flapping one’s hands or rocking back and forth, but each autistic person stims differently.  When I get suddenly excited or happy about something, I often jump up and down and flap my hands in a wild frenzy, which is an action I and other autistic people call “happy flapping.”  This is as natural and as instinctive to me as the urge to laugh at something that’s funny, and I love doing it.  Some say that laughter is the best medicine, but I say it’s happy flapping.

  1. Special interests

Sure, everyone has hobbies and passions.  But an autistic person’s special interest is next-level.  The common stereotype is an extreme love of trains, and I will admit that even I went through a train phase for a while as a young teenager.  But special interests can be anything.  They can be specific animals, plants, or places.  They can be activities, like different sports or types of games:  Baseball. Ultimate frisbee.  Scrabble.  They can be TV shows.  Movies. Academic subjects.  Video games.  Special interests can be can even be objects!  Computers.  Lampposts. Skateboards.  Icebergs…I think you get the idea.  You name it, it’s probably somebody’s special interest.  Special interests provide a kind of security, a safe haven in this loud, unfriendly, allistic world.  At the end of a long day around people who I feel like don’t understand me, I’ll always have my special interests to come home to.

  1. The online autistic community

Autistic people are everywhere.  We attend your schools.  Work in your favorite coffee shops.  We might be in front of you in line Post Office. We are your neighbors, your friends, your family.  You might recognize that we’re autistic, or you might not…but we’re here regardless.  Due to my tendency to engage in social masking, most people I interact with likely have little to no idea that I’m on the spectrum unless I choose to disclose to them. It’s tiring, to say the least. But there’s one communal space that doesn’t pressure me to conform to neurotypical standards of behavior: online. For myself, it started with YouTube when I was about thirteen.  Typing the words “Asperger’s Syndrome” into the search bar was like opening a door to an entirely different universe.  I was met with page after page of search results, a never-ending list of videos by people vlogging about their lives on the spectrum.  Thirteen-year-old me had discovered the autistic community, and it was all at my fingertips.

Today, I’m a part of about two dozen or so Facebook groups, Twitter chats, and special hashtags created to unite autistic people on the web.  The online autistic community, (the autistic self-advocacy and disability rights community in particular) has truly transformed my thinking around what it means to be a part of a marginalized group.  We post jokes and memes about autistic life, strategies for managing tough situations, realizations about living in our society as neurodiverse individuals, etc.  And most importantly, there is support.  Just a click away, there are people I know I can connect with because they experience struggles and triumphs through the lens of the autism spectrum, just like I do.

Whether I’m happy-flapping, doing research about my latest special interest, or participating in an online discussion with like-minded folks, there are some pretty great things about being autistic.  (And I’ve only listed three!)  Being reminded of the positive things helps the bad days ache a little less.  Sure, there are plenty of not-so-great things about living as a person on the spectrum. Most of the items on that list, however, are not necessarily because of autism itself.  Autistic people are navigating our way through a society that has a long way to go, especially when it comes to accessibility for and acceptance of those whose bodies and /or brains operate in ways that deviate from the current norm…But that’s a post for another day.

There is a common narrative in our society which tells us, in subtle and explicit ways, that disability is inherently tragic, that difference is wrong, and that autism is some kind of ailment that is to be prevented and cured.  In my opinion and lived experience, that couldn’t be further from the truth.  I think that in discussing and amplifying the wonderful parts of autistic life, we can all chip away at that toxic narrative, and hopefully build a better one that finally has the best interests of autistic people everywhere at heart.

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Behind The Mask

Self Portrait Blue EyesI am a slab of gray potter’s clay.  I am thrown onto the wheel and spun into submission.

I am made smaller, softer, hollow.

I am a block of mahogany.  My chipped corners are chiseled; my edges are sanded away.  

I am diminished, polished, perfect.

I am the mask I wear.

I am two, maybe three years old, and I’m waiting for my first fireworks show to start.  I am sitting next to my Dad on a lawn chair in the grass.  Or maybe I was perched atop his shoulders, waiting and oblivious. I had probably seen fireworks on TV or in my picture books.  I’m sure I was excited to see the colors burst and fade into the twilight sky. But the moment the first explosion went off, I was beside myself with pain from the loud booms.  Dad recently told me he had never heard me scream the way I did that evening.

Now, kindergarten.  I’m five. Other children are dancing in bold-colored clothing around the classroom.  There is lively music playing- probably some bouncy, high-pitched nursery rhyme- though my memory today holds no sound.  I am standing in the corner by the beige wooden building blocks, which I love.  I am twirling my arms in wide circles around me, back and forth.  Over and over again, in soothing repetition.

There are so many memories that make sense now.  All the painful noise and itchy fabric.  All the time I spent doing my homework during recess and sitting by myself at lunch.  All the odd, repetitive motions that calm me down, that lasso me back from the edge.  As a kid and younger teenager, I used to wonder if I was the only human being on the planet who was capable of thinking and feeling, and if every other person I saw was really, truly alive…like me. These days, I know what it all means because I’ve learned clinical, technical words for these experiences.  Sensory overload…Self-stimulatory behavior…Social inhibition…Mind-blindness. Autism Spectrum Disorder.

When I tell other people about the diagnosis from when I was younger, they often react with a measure of disbelief.  I’m most commonly met with, “Really?  I never would have guessed!”  That’s when I chuckle and look down at my shoes.  “Yeah, I get that a lot,” is my usual response.   But I want to be bolder.  I want to ask why they never would have guessed, even though I already know.  I can casually small talk about the weather.  I’m not obsessed with numbers or train schedules.  I don’t flap my hands in front of people or rock back and forth when I’m in public.  If I have to, I can make myself look someone else in the eyes.  I’ve learned to adapt. I’ve taught myself how to be in the world by copying the way the people around me do it, down to the very last, tiring detail.  I am always outside of myself, looking in:

How often should I look at my friend’s eyes when she’s talking to me?  Am I sitting in this chair the way a neurotypical person would?  I should probably stop fidgeting so much.  Am I modulating my tone of voice correctly?  I don’t want to sound too monotone.  What kind of coffee do I want to order?  I need to rehearse what I’m going to tell the barista so that I don’t stutter too much.  I really want to flap my hands right now because I’m stressed, but I think that guy over there is looking at me.  How am I being perceived by other people?  Am I being normal enough?  I mean, no wonder other people can’t tell. I don’t fit their mental image of what it “looks like” to be autistic, and it’s because I put every last ounce of my energy into seeming as “normal” as possible…whatever that even means.  I don’t do this to be fake, and I don’t do it because I think it’s bad that I’m autistic.  I wear the mask of normality because it’s safe.  I do it because I want to fit in with my peers.  Because it’s instinctual.  Because it’s tiresome being an “other.”  Pretending, though, is also tiresome.  When the world is a theater stage you can’t step off of, everything is exhausting.

In the autistic community, this practice of “faking it” is referred to as “Masking.”  We understand it to be a coping strategy born out of trying to navigate a world that was not built with us in mind.  It helps us blend in.  It keeps us safe.  But where is the off switch?  I don’t want to mask so much anymore…I’m tired.  I think:  I must act this way, so that other people don’t stare at me in public.  I have to put on a false face so that I can make friends.  I must change myself in order to be accepted.

I am a slab of gray potter’s clay.  I am thrown onto the wheel and spun into submission.
I am made smaller, softer, hollow. 

I am a block of mahogany.  My chipped corners are chiseled; my edges are sanded away.
I am diminished, polished, perfect.

Am I the mask I wear?

Autism, Transmasculine Identity, and Invisibility

The following post was originally published on Thinking Person’s Guide to Autism on February 26, 2018:

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Everyone in my life knows that I’m transgender. Comparatively, very few people know about another major part of me: that I’m autistic.

At age twenty-one, I’ve come to understand that many of my young adult years have centered around trying to bridge the gap between my two ways of being: The way that I present myself to the world, and the way that I perceive who I am. I imagine that someday, hopefully soon, those two components of my life won’t feel far apart. And hey, sharing this essay might even help.

I realized I was trans when I was fifteen, but just a year before had come a revelation of similar scale and importance to me; my diagnosis of Asperger’s syndrome (which is now referred to as Autism Spectrum Disorder.) I experience many symptoms or “traits” of ASD, and I won’t mention all of them here, but it’s worth saying that my traits are not obvious to the untrained eye. Underneath the mask, though, lies a deep unsureness of how to regulate social interaction. To cope, I copy, or “mirror” other people in order to appear more socially fluent and less awkward. And it works. Many people close to me might say that I “blend in” very well, in more ways than one.

Now that I’ve been on testosterone hormone replacement therapy for close to three years now, my voice is deeper, my jaw is squarer, and I even have a bit of facial hair. When I tell people that I was assigned the sex “female” at birth, they often say something to the effect of “I would have never guessed!” This is typically meant as a compliment, but to me, it feels patronizing.

In an eerily parallel way, people react very similarly when I disclose to them that I’m autistic. In both scenarios, the disbelief is caused by the preconceived notions of what it “looks like” to be transgender or autistic. I credit the testosterone as the reason I am not read as female, and to some degree, I credit my socialization as a reason I am not perceived as autistic.

Professionals who diagnose Autism Spectrum Disorder are, in general, proficient at recognizing autistic traits in males. After all, the original model for autism was based on studies of mostly young boys. Some doctors are still catching up to being able to recognize such traits in girls and women, but people are becoming increasingly aware that autism presents itself differently in girls than in boys. For example, autistic girls are more likely than boys to be masters of “social camouflage,” which masks their traits of ASD.

So, where do I fit into this framework as a transmasculine person? Yes, I identify as more male than female. However, I lived the first eighteen years of my life as a girl, and so I believe many of my ways of interacting with the world are byproducts of being socialized as female. But when I walk into my doctor’s office, they will likely overlook the significance of my history because they see that I now present as male, despite having a lot of learning experience in the world as a girl.

I’m the same degree of socially clumsy and unsure as when I was presenting as female, yet doctors who are new to my case and doctors who don’t know me well are less likely to agree with my diagnosis. Doctors will commonly overlook my noticeable lack of eye contact and my significant difficulties with Sensory Processing Disorder (which is a common co-occurring condition in autistic people) or severely under-appreciate just how utterly exhausting it is for me to engage with others. Maybe they don’t understand how much my executive dysfunction holds me back. Maybe they don’t believe me when I tell them that when I’m alone, I often flap my hands when I get excited as a means of expression, or that I rock back and forth when I’m focused on something. All of these experiences are very real to me, and yet they seem invisible to so many medical professionals, simply because I don’t outwardly appear to check all the boxes while I’m sitting across from them.

In addition to feeling unheard and unseen, my autistic traits are sometimes swept under the clinical rug and regarded as symptoms of conditions such as depression or severe social anxiety. I suppose it’s an easy enough mistake to make, but such a misunderstanding of my neurotype can lead to misdiagnosis, which could potentially then cause doctors to prescribe medicine and recommend treatments that may do more harm than good.

After receiving handfuls of labels from the DSM as well as literally dozens of unsuccessful psychiatric medications over the years, I’ve learned that much of the way I am is not something to be treated with various therapies and pills. This is not to say that autistic individuals cannot experience things like depression or anxiety which may be very much relieved via therapy and/or medication. I have simply realized that in my specific situation, the best route from here forward is perhaps to make peace with and embrace the qualities that set me apart from neurotypicals, or those who don’t experience neurological differences.

The intersection of being both autistic and transgender is more common than one might think. While the dialogue around autism and gender identity is expanding, I have a bit of trouble figuring out where I fit into the whole picture. So, I decided to do my own research, and while this subject is a fairly new field of study, I found some pretty astounding statistics:

In 2014, a U.S. study of 147 children (ages 6 to 18) diagnosed with ASD found that autistic participants were 7.59 times more likely to express gender variance than the comparison groups. Another study, conducted in the UK in 2015, involved 166 parents of teenagers with Gender Dysphoria (63% were assigned female-at-birth.) Based on parents’ report of their children on the Social Responsiveness Scale, the study found that 54% of the teenagers scored in the mild/moderate or severe clinical range for Autism.

The relationship has only begun to be explored in research in recent years, but I’ve come to realize that there are a lot of autistic trans people out there in the world. As someone who very much values human connection and simultaneously struggles with it, I have to say that looking at those figures provided me an amount of comfort. I discovered that there are a lot of people just like me.

Being autistic and being transgender certainly each has their own respective challenges, though one that they share is a lack of societal acceptance due to stigma. Many people still believe that who I am as a transmasculine person is inherently invalid, just like many other people still believe autism is some kind of tragedy that is to be cured. In contrast, I feel very strongly that who I am as a person is heavily dependent on both my trans and autistic identities, and that they are beautiful things. 

I would not be the person I am today if I did not have the incredible perspective that being transgender as well as being autistic has given me. My worldview has been altered by these two factors in particular in ways that I consider enlightening. Sure, I have tough days. But would I exchange all that I am in return for the promise of a simpler, more typical life? Most definitely not. Because after all, I’ve found that one of the best things about being dealt a different hand of cards is the unambiguous and fulfilling joy that is learning to accept oneself wholeheartedly.