Autism Etymology

I’m a little embarrassed to admit that I’ve been diagnosed autistic for a few years now and never really thought about what “autistic/autism” means.  For some reason it never crossed my mind, despite the fact that I spend a lot of time reading and thinking about autism.  The etymology of autism isn’t hard to figure out – some sort of condition related to the self.  And sure enough, Paul Bleuler coined the term in 1912, the notion of which is morbid self-absorption (source).  For historical context, this is back when autism was considered to be a trait of schizophrenia.

“Morbid self-absorption.”  To be blunt, that’s not accurate.  And this is coming from a person who is self-absorbed enough to blog about herself.  And I  would brush such a definition off by telling myself that word usage and meaning changes, except such a definition has proved to be an enduring myth.  In common portrayals of autistic people, I often see us portrayed as distant, aloof, trapped in a prison, unable to connect with mainstream society.  Because we’re something other than normal, we’re separate.  Because we don’t always contribute to society in the same way, we’re self-absorbed.

Yes, I’m a quiet person who needs a lot of alone time, but I actually like being around people.  If I seem self-obsessed or withdrawn, it’s usually because I don’t feel comfortable enough to interact.  Often, I don’t speak up because I’m not quite sure how to put my thoughts into words, and it’s easier to keep quiet than to worry about exactly what to say and how to say it.  I’m highly aware of the world around me; in fact, it’s overwhelming.  And yes, I can empathize and relate to people.

Like many autistic traits, and human traits in general, self-obsession can have good or bad aspects.  To be self-obsessed sounds extremely narcissistic.  But what about to be self-aware, to be insightful?  I’m often complimented on those qualities, and they serve me well.  I think there’s a certain sensitivity that shows up in my writing because of this.  There’s a beautiful quality to self-awareness, and that’s that it helps me open up and be vulnerable with others, as well as be more mindful with myself.  If this is what it means to be autistic, it’s wonderful.

New Semester

Not only is this a new semester, it’s also my last one here as a student at Appalachian.  I could try to wax nostalgic, but all I feel like right now is “it’s about darn time.”  I’m glad I feel this way, because I decided to graduate a semester early, after much debate.  I’ll miss a few people (mostly professors), but I know it’s time to move on.

It’s an odd semester.  I just have two classes on campus, both of which meet at 5pm.  I drive to campus as most people are leaving, take class, and head home.  Or, if there’s something I need to do in town in the morning , I hang around the halls of the anthropology department all afternoon, because making just one trip a day is efficient.  Aside from frequent trips to pick up library books, I’m more removed from campus life than ever before.

I feel like I’ve spent the past three years trying to find my place on campus with other students.  And really, it hasn’t gone especially well.  I’ve made a couple of friends, but ultimately, there’s been a huge frustration around feeling as though everyone else is on campus to socialize, while I’m there to actually learn.  I’m enthusiastic about many of my classes, and it tends to kill the mood when most other students don’t seem to be there for any other reason than to check off a requirement.  It’s been difficult to feel like an outsider.  I both love that I am so devoted to my studies and worry that perhaps there’s something else I’m supposed to have gotten out of the college experience.

My hope is that I’ll find grad school more to my liking.  I’m already to that stage where I’m totally immersed in my own work and finding classes to take that will further my projects and interests.  And it doesn’t seem like many undergraduate students have reached this point yet.  I find it so much more enjoyable to discuss research with my professors than to sit around before class starts and make small talk with students.  None of this is to say that there’s anything wrong with what I observe to be the experiences of other students, but certain elements of “college life” have not really worked for me, mostly when it comes to the pressure to be more social.  Instead, I’ve put my energy into things that matter to me, and when I graduate, I’ll have written a thesis, worked as a research assistant for a few different professors, and learned a lot of engaging material.  Some parts have been a struggle, but in the end it’s been worthwhile. And yes, I’m absolutely ready to graduate and move on.

On Writing

The written word is my favorite language.  It can be so complexly expressive without being restricted by any anxieties about verbal communication.  I am amazed that such minimalistic strokes as those that form alphabets can convey entire landscapes and thoughtscapes.   Writing can transcend space and time.  It also creates a buffer from the interpersonal pitfalls of face-to-face communication.  When I write, I don’t have to respond in a timely manner, and often it does take time to fully translate the swirling mass of thoughts into spoken words.  I can relax any worries about body language or eye contact.  I don’t have to regulate tone or volume.  This is not to say that I don’t enjoy speaking with others, and conversing is more vibrantly interactive, but when it comes time to clearly articulate my thoughts, writing captures a depth that my speech can’t quite get to.

I don’t remember learning to write or read.  I remember journals and trips to the library to check out towering stacks of books that were usually above my grade level.  I remember studying grammar and learning how to research and write a paper, tasks that I took to with minimal prodding.  I can only assume it was my voracious reading that helped me learn some of the intricacies of words, written and spoken.  Sadly, somewhere in college, reading fell by the wayside, and now it’s a rarity for me to take the time to read a novel.  Though what I read is usually non-fiction and for a project or a class, it is still often “reading for fun.”

I am writing more than ever now.  Most notably, my thesis.  Writing it is simultaneously draining and fulfilling, an act of creativity that requires intense discipline.  This blog is a bit of a break from that, a chance to write on a different topic.  I can let my brain rest from one thing while still keeping it active.  When I decided to major in anthropology, I didn’t realise that so much of the discipline involved writing.  I quickly realized that my anthropology classes demanded more writing than the classes I took in other departments.  And I love it.  I love that I get to be a writer.  I love that my thesis – and even this blog – are just steps in a career that will hopefully involve a lot more writing.  Ethnography might not be creative writing in the strictest definition, but it is absolutely a creative process, one where I can speak my native language through the written word.

What’s at Stake?

I met with my thesis director this week.  She was generous enough to read everything I had written on the the thesis to date.  As I put it to another professor when describing my progress, “I have 12,000 words.  They might not make sense in that order, but there are words.”  Not the most convincing statement of my competence, I know.  It almost goes without saying that a paper that long and still only a little over halfway finished is pretty rough.  Some days I write like it’s an Olympic sprint, desperately trying translate as many thoughts into words as possible.  Other times it’s quite painstaking, taking much deliberation to get through a sentence.  I get distracted pretty easily, jumping from one section of the thesis to another (on a related note: this post has been in progress for several days).  I’ve learned that it’s better to write what I feel like writing on a particular day and trust that I’ll come back to fill the gaps later.  Thus my thesis so far is a disjointed mishmash of ideas.

My thesis director pointed out that I didn’t really have a strong argument yet.  She said she wouldn’t pressure me to write a traditional thesis statement (which I appreciated, because in my opinion, once you’re past the first one or two college writing courses, a formal thesis statement seems becomes too simplistically frail to carry the weight of dense writing).  Instead of asking me what the thesis of my thesis was, she framed the question differently: “What’s at stake?”  In other words, why does this matter?  Why do you care?  Why should others care?  It’s my new favorite way to make sure I’m clear about my intention when writing.  The answer doesn’t appear right away, but when it does emerge, I want to make sure I’m asking the right questions to be attuned.

When I write about being autistic, what’s at stake?  I hope that I can share my experiences with people and ultimately offer some understanding of what it’s like to be autistic.  I find a deeper self-expression than I do during most conversations, share bits of myself that usually stay hidden.  I want to provide a narrative of what it’s like to be involved in anthropology from a frequently unexpressed perspective.

When I call myself autistic, what’s at stake?  It’s an identity, a framework that allows me to interpret my experiences.  Knowing that I’m autistic matters to me.  It offers some explanation for why things don’t always seem to click for me the same way they do for other people.  Or for why I get things that sometimes other people just don’t.  It’s easier to navigate life knowing that I’m autistic than to be left wondering what’s going on.  Trust me, the diagnosis is a relief.

There are potential pitfalls here.  Sometimes I worry that I’m sharing a limited view of myself, one that emphasizes differences and separateness.  It’s a fine line to walk, because I do want to talk about difference.  And I do move through life differently.  Being autistic is a difference that matters.  But ultimately, what’s at stake is the chance to talk about difference within this human experience we all share.  I don’t have the answer as to how exactly to treat difference, but I do have hope that it will unfold and take form throughout this writing project.

High-functioning

Let me start by saying I don’t really like functioning labels, though I do understand that the autism spectrum is extremely diverse and I can see the desire to try to order it a bit.

I’m someone who would most definitely be called high-functioning.  I am verbal, able to live independently, I possess intelligence well-suited for an academic environment, etc.  Normally, when someone brings up me being high-functioning, it’s to invalidate any severity of my autism.  “But you don’t seem autistic!  You must be very high-functioning.”  I can only assume that not seeming autistic is intended to be a compliment, which hurts.  And yes, I get that I am not as impacted as some on the autistic spectrum.  That doesn’t mean someone else gets to determine what level I’m functioning at or what that means in terms of support.  Functioning labels are expectations, and at least to me, having the expectation of being high-functioning can be a lot of pressure.  High-functioning autism is being autistic, but not really being that autistic.

I tell myself I’m high-functioning sometimes.  It’s a rebuke.  When I feel like I’m barely able to function at all, I tell myself I’m supposed to be high-functioning.  I drag myself out of bed, grab some manner of food, and trudge out the door because as a high-functioning autistic, I’m expected to need little or no assistance and manage to live a normal life.  Most of the time I do okay.  When I’m making it through everything I’m supposed to do and not struggling acutely, I don’t think of myself as high-functioning; I just think of myself as functioning, and I’m grateful for that, especially because I know it can shift ever so quickly.

Functioning is, of course, a standard that varies.  My functioning isn’t always going to look like your version of functioning.  Functioning labels are comparisons to what is perceived as normal and very often associated with verbal communication.  And functioning fluctuates.  Something as tiny as background noise or a change in my planned schedule can radically shift my functioning.  Not to mention if I’m tired, or simply having a bad day.  My functioning changes from day to day and place to place.  Not to mention that it changes depending on what area of my life is being assessed.  Point being, functioning is so fluid that attempting to label it is inherently incomplete and inaccurate.

As an autistic person, I don’t use a functioning label to describe myself.  It’s something that non-autistic people do, presumably in an attempt to make sense of me.  But if I really wanted to help someone understand me (which I do), I’d be more specific.  I’d mention that I am good with words and verbal processing, though I can’t always access it during face-to-face interactions.  I’d point out that excessive sensory processing is exhausting, if not entirely overwhelming.   I might add that I have strengths and weaknesses like every other human being.  And like anyone else, I cannot be completely encapsulated into a single label.

Participant Observation

I’m an anthropologist.

I look at the room around me.  I can understand the words being spoken, but some of the phrases seem strange.  If I speak, my words trip over each other, and my accent’s just not quite right.  I am unsure what the would be the proper way to join the social interactions, so I remain silent, watching and listening.  Even being quiet, I question my appropriateness.  What social rules should I be following with these people?  Perhaps I should be sitting a different way or have a different expression on my face.  I feel out of place, unfamiliar, uncomfortable.  This group of people speaks of social rituals that I have never experienced.  Perhaps, I think, once I become enculturated, I’ll share in these activities.  For now, I go back to observing.  It would be inappropriate to write field notes in this setting, so I rely on my memory to take in the details of where people are in space, how they are dressed, what they say to whom, and which items they carry with them.  I especially pay attention to what words they use.

This could be a reaction to starting fieldwork in a new setting.  At least, I imagine it as being something along these lines.  Really, this is a description of my everyday.  Sometimes it’s more pronounced than others, but it rarely goes away completely.  I have friends who will remind me that what I feel is not how they perceive me.  I can actually pass for neurotypical pretty well to someone who doesn’t know what they’re looking for.  And I know that I likely come across as a little odd, but nowhere as out of place as I typically feel.  That doesn’t stop me from observing, though.  I have spent much of my life watching people, before I considered studying anthropology, before I knew I was autistic.  I watch as an outsider.  This isn’t just a hobby; it’s a survival mechanism.  By tuning in to others’ ways of being, maybe I can understand myself better.  At first, the goal was to fit in as much as possible.  Now I know that forcing myself to be normal ultimately causes more stress than it’s worth.

Participant-observation is a classic mode of doing anthropology.  It’s based on the somewhat troubled notion of observing objectively while at the same time directly engaging as a participant.  I think this is more of an ideal standard than it is a foolproof methodology that always works perfectly.  Ethnography is messy – for everyone, not just me.

As an autistic anthropologist, the participant part is challenging, though observation seems to be a natural talent.  I’m rarely quite sure how to participate.  I get paralyzed in thought.  Usually by the time I get through observing, the moment to join in activity has passed.  It’s not that I don’t want to participate.  Quite simply, I often don’t know how.  I’m not likely to be proactive about participating.  It generally works out best if someone else takes the initiative of inviting me.  I find that because a large amount of observing and mental energy is required, I get worn out very quickly.  That tends to curtail my participation too, especially if I’m having to do a lot of simultaneous sensory processing.

Participation, in moderation, also has the wonderful effect of lessening the difference between me and others – some of which is self-imposed on my part.  Engaging with people teaches me that I am not necessarily always as bad at this social interaction thing as I think.  Though, sometimes, something goes awry and it reinforces that yes, I am autistic.  And when I connect and participate in a way that respects my limitations, there’s space for creative engagement and connection, both in my anthropological work and beyond.

I am Autistic

I guess I should start with some manner of introduction, though it feels stiff and formal to me.  However, I think it might be useful to let the future reader know a little bit about where I’m coming from and why I’m blogging in the first place.

Hi, I’m Rebecca.  I’m autistic.  I think my formal diagnosis is Aspergers Syndrome, back when Asperger’s Syndrome was still a diagnostic category.  I prefer to be referred to as autistic, though, or as being on the autism spectrum.  I dislike person first terminology when referring to autism, but I won’t get too upset if you call me a person with autism.  I chose to call myself autistic because I see autism as an inseparable part of who I am.

“I am autistic” is also an affirmation.  It means that I value myself just the way I am (most of the time – there are times where being autistic is hard and exhausting and really uncomfortable).  I am autistic.  This is how I experience the world.  It offers an explanation when I am overwhelmed with sensory overload or struggle to find the right words to connect with others.  Sometimes it’s a reminder that I might have to try harder than a neurotypical might.  Or it’s a statement of gratitude for my differences.  It also explains my position in writing this blog.  I think it’s important for autism to be represented mainly by autistic people.

There’s a lot to being autistic.  Mostly I want to focus on how it articulates with my nascent career as a cultural anthropologist.  What is it like to be a social scientist and autistic?  How does it effect my fieldwork and ethnography?  Am I perhaps inclined to approach anthropological projects in different ways?  What can I offer?  Those are all topics to explore.  Some of my blog posts will be more personal in nature.  Think of those as field notes of an autistic experience.  Other times I’ll be connecting my experience to that of other writers.  And occasionally, I’ll want to use this blog as a platform to react to events related to autism awareness, acceptance, and advocacy.  A clearer vision might emerge in the future, but for now my main intention is to create a space where I share bits of my story and experiences with anyone with interest in autism or anthropology.