Getting to the good parts

People have a look that they get when you tell them you’re autistic.  I was baffled by what this meant until I started reading the literature surrounding neurotypical narratives of autism.  There’s a word that’s ever-present in those narratives, whether or not it’s actually written.  Tragedy.  A person locked in a life of isolation, rigidity, and underachievement, unable to enjoy the neurotypical norms of concepts like intimacy and intuition.  Reality not matching the ideal of a child conceived.  Many people are eager, perhaps without even realizing they are doing so, to recode the autistic as a “person with autism,”  to avow “awareness” in the name of “intervention,” to erase the identity entirely and call it inclusion.

Individuals can be forgiven for thinking this is the sensitive belief to hold.  Read about autistic experience and you learn of loneliness and frustration that is poignantly real.  But it is pervasive narratives of tragedy that forefront these truths at the expense of other equally real aspects of autism, of which the vast majority of those who know something about neurodiversity still seem largely unaware.

Being autistic can be fun.  Sure, there’s probably a whole range of pleasures neurotypicals experience that most of us struggle with or just don’t like.  But if so, the corollary is true as well.  Just like I will probably never understand what the huge god damn deal about The Godfather is, but many of the people who consider that blasphemy will never share my appreciation of Dover Beach.

1)  One more time with feeling

To start with, boredom is different for me.  I get bored really quickly with nothing to do, but I don’t get bored with things the way most people seem to.  If I like a song, I quite happily listen to it a limitless number of times.  There are books I’ve read dozens of times, and movies I’ve seen hundreds of times, to the point where I can (and do, if I’m alone) speak along with the dialogue.  These things simply don’t stop giving me pleasure.

And with each repetition, if a scene or wording or melody elicited an emotional reaction, I get the same reaction again.  Instead of getting used up, those reactions compound, and the meaning I receive is more pleasurable because it’s exactly what I expect and look forward to.  Often, the first time I experience something, I don’t know yet whether or not I like it.  Ask me after twenty replays and I’ll have a very strong opinion.

It might sound dorky, but in a very real sense, the media I add to my “playlist” are my friends.  I get excited to see them again.  I know I can count on them for good company, and they’re always there when I need them.  I’m at ease with them because I’ve arrived at a soothing degree of familiarity.  Why wouldn’t I like having friends like that?

2)  Say it again, Sam

I’m the same way with jokes, and with reactions in general.  The same joke in response to the same stimulus just gets funnier to me.  Or, more accurately, it “builds up” an additional type of pleasure that I have trouble describing, and I honestly have no way of understanding how many other people share it.  That becomes the thing to say (or hear) in response to that situation.  It fits.  It’s somewhat like those “most satisfying” videos that made the rounds a while back.

I won’t say it’s like scratching an itch, because it isn’t a compulsion.  The motivation isn’t that it would feel so wrong to not say it, it’s that it feels so gloriously right when I do.  More simply, I don’t need to, I want to.  Even if no one else is there, I’ll still make the joke.  (Or say the phrase, or do the sound effect.  Yep, the whole world has sound effects in my head.)

Just one example:  Whenever I’m getting ready for a trip, I say, “Preparations, Bursar, preparations!”  It makes no difference whether anyone’s around to hear, because that’s a throwaway line from Educating Rita that you’d be extremely unlikely to recall unless you’ve watched the movie as many times as I have, and trust me, you haven’t.  But it still makes me really happy.

I can’t say with certainty that it’s a facet of autism per se, but anecdotal evidence has told me that NTs by and large really, really don’t appreciate the amount of repetition that I do, in either reception or behavior, while many autistics know exactly what I’m talking about.

I find it hard to imagine experiencing the world without that particular form of enjoyment.  It seems like it would feel like losing one of my senses.  A little emptier and sadder.

3)  Talk nerdy to me

One of the best things about autism is special interests.  On the whole, autistics are nearly always nerds.  We tend to have very particular topics about which we are intensely curious and passionate.  Sometimes only one, sometimes a few, and sometimes they change over time.  For me, astronomy and language are my long-standing fascinations.

We want to know absolutely everything about those topics.  There doesn’t seem to be a point at which we say, “okay, enough of that.”  Often, we can mentally retain huge troves of information about them to recite at will.  I have trouble remembering the simplest things about my day to day life, but ask me who’s currently on board the International Space Station or for a comprehensive history of Mars orbiters and landers and I’ll happily tell you all about it.

What’s at least as enjoyable as devouring these endless amounts of information is sharing them.  We love to talk about our special interests.  Typical “small talk” is exhausting, but explaining far-infrared interferometry is a truly joyous occasion– perhaps even energizing.  I don’t think the reason for this is that we want to show off and appear smart.  We’re just so enthused about our learning and thinking that we love when we can let it bubble over freely, kind of like when someone falls in love with another person and can’t wait to tell the world.

Unfortunately, as with repetition, many NTs don’t appreciate hearing nearly as much about our special interests as we would like to share.  We tend not to excel at give-and-take conversation without conscious effort, and often find it difficult to know where to draw the line.  Unless we’re careful to curtail our enthusiasm, I think we can come across as tedious and rude.  This has often led me to feel embarrassed about acknowledging the peculiar extent of my passions, but in return, that makes it all the more exciting when someone shows a genuine interest and really listens.

4) Ten thousand hours

Akin to my love of repetitious media is my willingness to doggedly repeat trivial tasks until they become second nature.  When I was ten, I played Minesweeper for so much time every day that I was able to beat the most difficult level every single time in under 20 seconds.  These days, it’s sudoku instead.  In the past half decade or so I have done thousands of sudoku puzzles.  I’ve gotten to a point where, often, I don’t have to engage in the linear logic process to deduce what digits to fill in– I can just glance at the puzzle and know what to put where.

I’ve heard a theory expounded that becoming an expert at something requires putting in ten thousand hours of practice.  I haven’t the slightest idea whether that’s true in general, but I am certain that I have put more than ten thousand hours into multiple activities in my life.  Perhaps it’s unfortunate that they tend to be skills that have no serious value in the world.

But the process of a task progressing from baffling to intensely intuitive is deliciously satisfying.  It’s like cracking a code, or maybe a safe.  Maybe part of the pleasure stems from the fact that these skills are inherently crack-able, like learning the algorithm to solve a Rubik’s cube.  They are orderly, static, and ultimately entirely comprehensible regardless of the level of complexity.  That’s a comfortable space to occupy, in stark contrast to the chaotic and overwhelming processes at work in the world at large, especially those that factor in other humans.

Cue The Thing To Say:  “I’m not sure I’d know how to ‘dabble,'” quoth John Thornton in North and South.  (Goofy grin ensues.)

5)  Pain don’t hurt

In truth, I’m a total wimp when it comes to even moderate discomforts that go on for long, such as room temperature variations.  But in the case of acute pains, even pretty intense ones, they just don’t register as a big deal to me.  My understanding is that this is two-part:  On the one hand, the pain I experience just isn’t as severe as it is for most people.  And on the other, what acute pain I do feel just doesn’t faze me that much, for whatever reason.

I suppose I can’t really say that this characteristic is “fun,” since I’m not a masochist.  But what it is, is extremely useful, particularly insomuch as it grants me a degree of self-sufficiency that I cherish.  I’ve had no qualms about performing my own ear and facial piercings, which, just like cutting my own hair, has saved me hundreds of dollars versus having a professional do them, and also prevents me having a stranger’s hands on my head, which I loatheWarning: grisly examples follow; highlight at your own risk!  [I’ve stitched up my own wounds, lanced my own abscesses, and excised a small amount of necrotic tissue that I stupidly caused by suffocating a fresh piercing.Again, this means I’ve avoided several trips to the doctor that would have been distressing for me for sensory reasons.

By no means all autistics have low pain sensitivity/high pain tolerance, and it exists in NTs as well.  But it seems to be more common with us, which I venture to suppose makes sense given that it’s probably a neurological difference.  It feels to me like a pretty good consolation prize for crying if my feet are cold and feeling like I need a shower if a stranger gets touchy-feely.

 Conclusion:  I am not your crusade

Nothing I’ve written here is remotely intended as bragging.  Sometimes I joke that “autism is my superpower,” but being earnest, I don’t value these aspects of myself because I think they’re special or impressive.  I value them because they bring me joy.  I’m not a savant, a “supergenius,” or a person who’s ever likely to make a deep impact on the world.   Honestly, I was pretty far along in life before I understood that everyone didn’t have these same characteristics and preferences.

I’m extremely committed and proficient with regards to some things, and painfully incompetent at others.  Chances are, so are you, whether you’re autistic or not.  If we’re to talk about impressiveness, I’m far more in awe of people who can maintain full-time employment and have a number of close friendships.  It’s just that the world as it stands tends to applaud and compensate achievements characteristic of neurotypicality far more than autistic-associated ones.  That’s a dynamic of minority and privilege, not pathology, and it’s why our self-advocacy is pivotal.

My point, rather, is that being autistic can be a frustrating experience, but it doesn’t have to be a miserable one.  We aren’t suffering from an illness, and you shouldn’t assume you need to pity us because some of what you hold dear is beyond our grasp.  I’ve felt a lot of hurt at the things I can’t do– largely because I’m aware that they are what’s expected, and that damages my self-esteem.  But if you gave me a big red button that said BECOME NEUROTYPICAL, I wouldn’t consider pressing it for even a fraction of a second.  You couldn’t pay me enough to touch it.  This is who and what I am.  I don’t want to be someone else.  I just want the same as anyone, to be valued, loved and supported, not in spite of my eccentricities and foibles, but because of them.

We are not broken versions of neurotypicals.  Perhaps you look at us and believe we are puzzles with missing pieces, like a house without any doors.  That’s not the case.  It’s just that while you were fussing about the door, we were busy looking out the window.

 

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This short video shows why Autism Speaks needs to shut up and listen

I’ve posted before about why I’m not behind the puzzle symbol for autism.  But I want to talk more specifically about why I strongly object to the ideas and methods of the most prominent autism awareness organization, Autism Speaks.

This video from their “About Us” page is revealing.

In the first seconds, we hear the experience of having an autistic grandchild described as “heartbreak” and later as “grieving.”  The boy’s family members make it clear that they were proud of who he was before his symptoms manifested fully.  But they have nothing positive to say about his worth as an autistic individual, and show no concern for what his experience is.

This is emblematic of the lack of self-advocacy in the autism awareness movement.  Coverage focuses on the experience of families, and treats autistic children as if they’ve died or become vegetative.  (It doesn’t focus on adult autists, period.)  If a positive trait is mentioned in an autist, it has to be some savant quality: precocious piano or art skills in someone non-verbal, for example.

In the video, we see clips of children– almost all boys– stimming and averting their gaze, juxtaposed with clips of neurotypical adults clapping and cheering about their own accomplishments.  Toward the end we are granted a few moments of adult (again, almost all male) autists in occupational therapy.  But we don’t see the co-reality of independently living autistic women (hi!) or children who are verbal but melt down in social situations, etc., and we don’t talk to autists, or hear from autists, we talk about them.  And about their behaviors, not their feelings.  It’s like having a women’s rights committee made up only of men.  “Be thankful for your neurotypical advocates, because all you do is stim,” is the takeaway, when it should be, “Here is a platform and a voice for autists and families to open a conversation.”

Brief glimpses of the group’s slogans and catchphrases are also telling.  We get a brief shot of a person’s back with a tee shirt that says, “Autism will not stop me.”  Later, a graphic from a news report shouts, “Autism Epidemic.”  This is the type of militant attitude that Autism Speaks takes toward neurodiversity.  Autism might as well be neurosyphilis.  What do we do with epidemics?  We don’t live with them and understand them and love them, we eradicate them, or try.  I’m not saying Autism Speaks wants to eradicate autists– just our deviant brains and experiences.

But how can they eradicate when all they are trying to do is “raise awareness”?  As they say in the video, awareness and advocacy “go hand in hand.”  What they don’t clarify is that when you talk about something, you advocate for your view.  Because, language.  When your pleas for autism to become a “household name” are coupled with references to an autism “epidemic” and “grieving” for the neurotypical child you’d rather have, a mouth as big as AS’s starts to be heard, and to drown out everything else.

What we need isn’t awareness for its own sake, or awareness so we can “nip it in the bud,” it’s awareness so that we can understand each other.  We need the active inclusion of autistic adults in all forms of advocacy, from advertisements to board meetings.  We need representations of many of the infinitely various manifestations of autism.  We need to spread not just our label, but a respect for neurodiversity and disability rights, to every corner of the globe.  (After all, most people know what ebola is, but again, what do we do with epidemics?)  If you’re not on board with that, then get the hell out of the way so that people can see and hear those you claim to represent.  No amount of money and “awareness” will rectify the damage you are doing to public discourse about the spectrum.

In one of the most offensive moments in this very troubling video, the voiceover informs me that each of us autists costs $2.3 million over a lifetime, for a total of $137 billion (in what time frame and geographical area I have no idea.)  Seriously, who made this video and failed to go “Uhhh… let’s not monetize the value of human lives”?  Gee, Mr. NT Man, I’m sorry that you find no value in my contribution to society and only see a price tag on my head.

I’m not claiming that everything Autism Speaks is associated with is bad.  On my college campus, I once had a conversation with an 18 year old fellow autist and her friends, members of the local AS group, who were letting people throw pies in their faces to raise awareness.  We talked about neurodiversity and they said they had never thought of autism as a disease and didn’t want to “cure” it.  I wish those students’ attitudes, conviction and sensitivity carried over to the national organization.  Until then, I suggest the group change its name to “Autism is Spoken About,” because right now, they do not speak for me.