On Fidgeting

I’ve been keeping an eye on the fidget spinner trend which has been characterized as the “latest classroom menace” and even more hyperbolically as  “a threat to America”.  Let me be clear in that while I don’t think these plastic spinney things pose a risk to national security, I can imagine them wreaking havoc in a classroom.

What sort of bothers me about this whole issue though is that fidgeting is hardly a new trend.  Specialized fidgeting tools have been used for years, probably decades, mostly by neurodiverse people (mainly autistics and those with ADHD, from what I’ve heard).  Neurotypicals fidget too.  I think most people fidget to some extent — clicking a pen, biting fingernails, or tapping feet, for examples.

For many autistic people though, this goes beyond just “fidgeting.”  In clinical, DSM-V terminology this is “stereotyped or repetitive motor movements,” part of the diagnostic criteria for autism spectrum disorders.  In the language of the autistic community, this is called “stimming,” short for self-stimulating behavior.  Autistic people stim to cope with sensory overload, to self-soothe, and because it’s fun.  For example, I’ll often flap my hands when I get excited or rock back and forth when I want to calm down or focus.  Until recently, I never got any special “stim toys” or tools, but there has been a market for such things for, and sometimes by, autistic people long before the past several months.

It’s been interested seeing something that I would go so far as to label part of autistic culture become mainstream.  Now, I don’t care if you’re neurotypical and want a fidget toy.  Go for it.  But can we talk for a bit about how when autistic people stim it’s seen as odd or even discouraged?  What about how some autistic people are forced in to behavioral treatments that punish stimming?  For me, that  is enough to put somewhat of a restraint on celebrating the normalization of stimming by neurotypical people.

The upside?  I feel comfortable enough with stimming in public that I bought a fidget cube, (though this was before the fidgeting craze really took off).  I will say that the fidget cube has helped me manage anxiety in overwhelming or stressful situations.  Now that neurotypicals do it, fidgeting isn’t seen as stigmatized.  Having a larger market will make these items cheaper and more accessible to those who need them most.

And at the same time, I’m reminded of being a little kid and being told not to flap my hands.  Is fidgeting only okay when certain people do it?  Can we move towards understanding and accepting neurodiverse means of body language and communication in general?

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Autism Awareness Month

Yesterday (April 2nd) was “Autism Awareness Day,” and the entire month of April is dubbed “Autism Awareness Month.” (April is also Distracted Driving Awareness Month, National Canine Fitness Month, and National Fresh Celery Month, among many others – just in case you were wondering.)  April is the one month of the year where people who wouldn’t ordinarily care about autism can make some sort of token gesture to make other people aware that there is something called autism.  Yes, this day/month makes me even more cynical than usual.

Awareness.  That’s setting the bar really low.  In fact, I think most people are generally aware of autism.  Awareness does not necessarily accomplish much.  As many autistic people are quick to point out, awareness doesn’t really do anything to help us.  In fact, I would argue, prioritizing particular narratives pathologizes autism, and creates pity and fear.  Often Autism Awareness is paired with a statistic about the increasing prevalence (which can largely be explained by better screening and broader diagnostic criteria).  Autism Awareness is aimed at parents and caregivers of autistic/potentially autistic children.

For those of us who are actually autistic, this Autism Awareness, characterized by Autism Speak’s Light It Up Blue campaign, accomplishes nothing positive.  I recall a few years ago when the campus chapter of Autism Speaks put a light blue puzzle piece t-shirt on a large statue of our school mascot.  At the same time, I was struggling with professors not respecting my academic accommodations and a lack of support in general.  As I walked past that statue daily, I quickly grasped that Autism Awareness meant nothing in practical terms.

Though I would personally be happy to skip this month all together, many autistic people work to reframe it as Autism Acceptance Month.  Acceptance focuses on inclusion and understanding, not increasing visibility.  I absolutely support autism acceptance.  Acceptance, or a lack thereof, is something that myself and others grapple with for the entire year, not just a month.

Focusing on autism acceptance is one way to move past the damaging awareness narratives.  But there is something around awareness that I would like to do, because I think many people still need a deeper autism knowledge.  I decided that for the remainder of this month I would write about some of the issues related to autism that I wish people were more aware of…

… and then I got busy/distracted, so here’s the gist in list form:

  1. Autism is not just a childhood thing.  People don’t grow out of autism.
  2. Autism is part of my identity, much like gender, sexuality, or race.
  3. There are many different ways to be autistic.  Autism doesn’t look the same in everyone BUT there are many shared common experiences among autistic folks.
  4. Being autistic is actually pretty okay most of the time.  Not all autistic people want a cure.  I’d much rather work towards social understanding and inclusion instead.

Seeming Autistic?

“But you don’t seem autistic!”

It was a statistics professor who first said those words to me, after she was being inappropriately pushy about wanting to know exactly why I had disability-related accommodations.  I try to reassure this professor that I am indeed autistic, though I’m put-off by her congratulatory tone.  Is she suggesting that it’s a good thing that I don’t seem autistic?

“But you’re clearly so high-functioning!”

That same professor continues.  I was probably staring at her blankly, trying to formulate a response to what seemed to be both a compliment and an insult, unsure just how to react.  I wondered why she felt that she was an authority on my diagnosis and functioning-level after having me in class for only a few fifty-minute periods.

“But you’re in college!”

The issue becomes a little clearer.  I’m not meeting her mental picture of an autistic person because I’m too intelligent and articulate.  I’m neither at the moment, as I stammer out some sort of response, whatever words will end this encounter and give me time to process exactly what’s going on.

No matter how well-intentioned such statements are, they are problematic.   They show a limited understanding of what autism is.  They assume that not seeming autistic is a good thing.  They minimize my experiences as an autistic person. They assume a high degree of knowledge about who I am and usually come from someone who doesn’t know much about autism at all.

I inhabit some uncomfortable  space between being seen as autistic and being seen as neurotypical.  Some days I pass for neurotypical with apparent ease, and some days I look at behavior and think “that’s such an autistic thing to do.”  I’m never sure how I’m coming across, if my body is being read as autistic.  Some people pick up on my autism in minutes, others know me for years without figuring it out.

There is not one way that autism looks.  There are stereotypes: the savant, the train-obsessed boy, the geeky know-it-all who’s socially clueless.  I’m none of these.  No person, autistic or otherwise, is so very one-dimensional (though these are completely valid components of some people’s experiences).  Autism looks different from person to person, and from circumstance to circumstance.  I might not seem autistic in one moment, but that is not a reason to question my identity.  If anything, it means we need more diverse ideas about what autism is.

 

Studying Feminism and Food

The day after the election I went to class.  It is more accurate to say that I woke up, Googled the election results, and spent most of the day hanging around my bed, until I had to leave the house to run some errands and make it to my 5:00 class.

This isn’t an anthropology department class; it’s not a class I’m required to take.  It’s an upper-level women’s studies class about feminist theories and the decolonial politics of food.  (Sounds awesome, right?)  I walk into the classroom six minutes early.  One other student is there, and half the lights are dimmed.  The atmosphere is bleak, to put it mildly.  Several more students come in, and then the professor enters, switching on all of the lights.  No one looks happy, and half the class is missing.

The professor fiddles with the computer and project, and then closes her eyes, seeming to compose herself.  I wonder what she will say, and recognize that this must be an especially difficult time for many of my professors to lead classes.  “The work we are doing now matters more than ever,” the professor says.  She says a few more words, affirming the value of what were studying in light of the president-elect, and then moves on to discussing the final exam.  We sink our teeth into the readings for the day: an excerpt from Judith Butler’s Gender Trouble and Anna Tsing’s The Mushroom at the End of The World – perhaps the perfect book to be reading now, as it examines life in a state of precarity, looking at growth rising out of ruins.

Reading Butler perhaps excites me more.  It’s the sort of post-modern discursive theory that I love.  I’m fidgeting with excitement as we discuss the body as a space for identity and performativity, and how the individual exists in relationship to society.  I realize that I absolutely love what I do and want to follow these tangents of thought.  Even in the solemn mood, I find an aliveness in the joy of theoretical discussions, especially those with relevant applications to the worlds I find myself in and want to make.

This class has been one of the most soul-soothing experiences.  Here, more than any other class, we talk about difference and identity.  It’s acceptable to examine racism, sexism, and ableism.  We talk about transnationalism and interconnectedness.  We examine different models of feminism, none of which are presented as being beyond critique.  I’ve realized that we can substitute “neurodiversity” in place of “gender” and explore many of the same arguments.  And yes, this is absolutely important work.  These conversations matter, and will continue to be ever-so-important as we move forward.

Thesis

I haven’t been blogging lately, probably because I’ve been busy putting the finishing touches on my thesis.  I’ve got several half-written draft posts, but the focus required to polish them has been directed elsewhere, into the most important part of my academic career to date: my thesis.

Now, my thesis is done.  I finally recognized I was working on it much harder than I had to and let it go.  I still have time to make a few tweaks here and there before I have to submit a final version for binding and archiving, but it’s basically written.  And I have my defense in a couple weeks to be nervous about in the meantime.

My thesis is so much more than a really long paper or research project.  It’s not even just that it’s my capstone and a necessary part of graduating as an honors student.  It’s that so much of who I am shows through.  I’ve put my mind and heart into this project and didn’t edit them out.  And foremost are the parts of me that I wouldn’t normally showcase – the uncertain, indecisive, conflicted self.  Even in the very last pages, I am hesitant that I am writing the right things.  There’s also parts with my matter-of-fact humor, sharp opinions, and hopefully some degree of intelligence.  There’s empathy for the people in the situations I write about, and the sincere hope that whatever critiques I have are well-directed.

I think there’s a stereotype of academic writing as dry, objective, and impersonal.  And maybe that’s true in some cases.  But, no one in my committee asked for that.  They let my thesis arise from my own stories, my own point of view.  They told me I needed more self-confidence, and they were willing to support my personal conclusions pretty unconditionally (I assume some conditions would arise if my conclusions were absolutely unreasonable).  They didn’t just tolerate my personal narrative, they encouraged it.  And they totally knew how to push me, too – but in all the right ways to let me speak for myself.

I went into this project feeling woefully underprepared.  For me, the thesis didn’t feel like a natural evolution that gradually built off of my previous classwork.  As much as I’ve known it was coming since the very beginning of my college life, it was still an unprecedented obstacle.  I’m not entirely sure how I made it through.  Even six months ago, I couldn’t imagine being where I am now, having turned a bunch of messy field notes and experiences into a finished piece.  I’ve received tremendous support from the anthropology department and my committee in making this thesis a reality.  It’s been a good experience, though not an easy one.

Becoming Autistic

I wasn’t diagnosed with autism until right after my eighteenth birthday.  I remember this because it was my first medical appointment where I had to sign a release form for my parents to access my records.  Eighteen years is late for an autism diagnosis, but it’s not that unusual, given that I’m female and fairly good at passing for neurotypical.  I also strongly suspect it might have something to do with me being educated outside of the public school system.  My assessment was a lengthy appointment (several hours), but I’ve heard worse horror stories.  It involved a lot of forms and tests, and finally an evaluation with a psychiatrist.  At the end of it though, I had an answer:  I was autistic.

That day, nothing really changed about who I am.  Seemingly, I was the exact same person I was before.  Except, I wasn’t.  Knowing I’m autistic produced a different way of understanding myself.  I know some people are prone to telling me that it’s just a label, but it’s really more than that.  It’s knowledge.  It’s a way of making sense of how I experience the world.  Knowing I’m autistic helps.  It’s slightly counter-intuitive: I feel less weird, despite being “atypical.”

I didn’t know much about autism.  When it was first mentioned that I might be autistic, I started the project of researching.  What I learned was that the seemingly isolated incidents of my life actually formed a pattern.  My social anxiety, my difficulty forming relationships, intensely focused interests, the childhood hand-flapping that I had since been taught not to do – taken separately they seemed unremarkable, but they meant something when put together.  The months pre- and post-diagnosis were spent learning more about this new potential identity  I found resources created by autistic people, and I learned new vocabulary to describe my experiences.  It was wonderful to find people that shared my experiences, and I learned that perhaps I wasn’t quite as odd as I thought.

Becoming autistic didn’t happen overnight.  Though I had little doubt about the accuracy of the diagnosis, I still had uncertainty about not being “autistic enough.”  Most of the diagnostic criteria fit, but did I really have a “disorder,” or was I just bad at being “normal?”  As socially-constructed and loaded as these terms are, I found myself in some in-between space, not unsure if I deserved to claim the label of autism or if I just needed to try harder at fitting into the label of neurotypical.  None of my hesitancy stemmed from believing that autism was a bad thing (in fact, confirming that I was autistic seemed like a great thing), but from not trusting my experiences.

As time went on, I started seeing myself as autistic.  When something happened that I might otherwise brush aside, I could see it as an autistic trait.  It became a bit of an experiment: Was I actually autistic?  If I did an “autistic” thing, how did it feel?  For the first eighteen years of my life, I didn’t know I was autistic, so it’s no surprise that it wasn’t an immediate transition.  For a time autism felt like something I was stiffly performing; now it’s an identity I slip into much more easily – though rarely unthinkingly.  So, while I’ve always been autistic, being consciously autistic is a relatively new experience.  Ultimately, it has brought more self-acceptance and confidence.  I feel as though I know myself better.  I know my strengths and weaknesses, when I can push my boundaries and when to respect them.  The diagnosis helped.

Enough with the Puzzle Pieces

I’m sitting in my art theory seminar.  As my fellow art students argue that everything is subjective, there are no rules, and they can do whatever they want, I stare down one leg of the U-shaped table.  I see a cup sitting in front of the student at the very end, and on the cup I see the light blue puzzle piece that is the logo for Autism Speaks.  I’m not going to discuss why I have a strong dislike of Autism Speaks (HERE is an extensive summary of reasons if you’re curious).  It’s not the only organization that has adopted the puzzle piece as a logo, but because of its prominence and a number of commercial partners, that light blue puzzle piece ends up a lot of places.  In this case, it was on a disposable clear plastic cup from McAlister’s Deli.  I wondered if this student knew anything about what she was supporting or if she just wanted a cup of iced tea.

a-logo
The latest Autism Speaks logo

The puzzle piece has become a symbol for autism.  Autism Society has its trademarked ribbon made out of puzzle pieces.  Then there’s the Autism Society of North Carolina (seemingly unaffiliated with the aforementioned society) that also has a puzzle-piece-inspired logo.  There’s also the Puzzle Piece Foundation that not only uses a puzzle piece in its logo but in its name as well.  Searching through the internet, I see puzzle piece jewelry and puzzle piece tattoos.  And I see the various meanings that both autistic and non-autistic people have attributed to the puzzle piece.  Some are for it; some are against it.  And I’m certainly not the first autistic blogger to address this issue.

But as I sit in class, I think about how pervasive this imagery is and how I interpret it.  What does this symbol mean?  Is autism a puzzle?  Am I a puzzle?  Am I a missing piece or an out-of-place piece?  Am I that piece that you think should fit in a certain place of the puzzle but inexplicably doesn’t and drives you crazy?

Yes, autism is mysterious.  We don’t know a whole lot about what causes it.  That’s slowly changing.  A puzzle is something to be solved, something to be arranged and ordered, something to be put back together to make a cohesive image.  Autism doesn’t need to be solved as much as it needs to be understood.  It’s not something that needs to be rearranged until it makes better sense or turns into an image that is aesthetically pleasing.  When I see the puzzle piece, I think that perhaps I am a piece out of place that must be made to fit in as part of a larger whole – never mind that it might not be the right place for me, just as long as I’m put somewhere.  A jigsaw puzzle is a very strict metaphor.  There is only one right way to construct it and every piece has it’s predetermined place.  I am not a puzzle piece to be forced into one spot.