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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Autism and friendship

I wrote recently about how disabilities, and autism in particular, can affect romantic relationships.  So I thought it was time to address the related topic of how being an autist has affected my ability to form and maintain friendships.  I’ll focus on adult friendships here, because I think they are of a fundamentally different nature from childhood ones.  I may blog more in the future about my experiences as a child.

As a teenager, I was a confirmed loner.  I simply lacked the skills to form even the most basic of friendship bonds, and most of the time I wasn’t really interested in spending time with others, anyway.  But I realized that I needed to be able to relate to people better to succeed in life, and also to avoid humiliating myself, which has always been one of my biggest fears, perhaps because it’s happened so many times.  I did get lonely, and more than that, I desired approval– validition– confirmation that I wasn’t as unlovable as I felt.  So I devoted myself, over the course of several years, to watching and learning, and by my early twenties, I had developed enough skills that I was able to engage in relatively standard ways– up to a point.

Shortly after my son was born, I moved to a new city, and via receiving breastfeeding counseling and taking my son to a toy lending library, I encountered some other parents with values similar to my own.  I was invited to a support group, a playgroup, and several birthday parties, and this led on to occasional one-on-one playdates.  Being a parent greased the wheels:  We had something designated acceptable and mutually interesting to talk about, and when there was an awkward silence because I was lost, it was easy to redirect attention to something the kids were doing.

Nevertheless, such socializing remained a nerve wracking and exhausting experience for me.  I looked forward to it, but I also dreaded it.  It was hard to remember what things were rude or too blunt to say; how often to nod, smile and say “uh-huh” to show that I was listening; how much it was okay to talk about my special interests without seeming weird; when it was time to talk without interrupting.  And I never did get the hang of eye contact (and still never have.)  If I tried, I simply stared, which made it appear I was being creepy or romantically interested, and it made me uncomfortable anyway, so I just gave up on that part.

Partly because of these difficulties, I never really considered my “mommy friends” to be real friends– more like acquaintances.  We spent time together because of two factors: our childrens’ ages and our parenting style.  I liked some of them a lot and wished I could get to know them better, but I didn’t know how, and frankly, they didn’t show any interest or make any effort, so I felt that I would be imposing on them if I tried.

In some cases, this was really deeply hurtful.  In one case, I met two women at the same time as they met each other.  I chatted with each of them, and I went on to spend time with both.  I really liked both of them.  However, it was clear that they “hit it off” with each other far more than they ever did with me.  It went on that while I would have the occasional playdate with either of them, they became very, very close.  I knew this because I heard each of them talk about the other, and because I was privy to their Facebook interactions.  They went for impromptu walks together.  They called each other on the phone just to talk, and talked about their feelings.  They invited each other to family gatherings.  They talked openly about how much they “loved” each other.  (Note, this was a platonic relationship; both were involved with members of the opposite sex.)

I never did any of these things with either of them.  I wanted to.  But I didn’t, and I didn’t know how.  I cried about it.  I drank because of it.  And I felt pathetic for doing both.  I didn’t know when it was and wasn’t okay to call someone, or what to say if I did.  I didn’t think it would be okay for me to talk to them about my feelings, because they didn’t with me.  If I messaged them and suggested a walk or lunch on the same day or the next day, they invariably had something else planned (or said they did.)

At one point, I found out on Facebook that they were having a crafts group with several other mutual acquaintances.  Now, I was and am one of the most crafty (in the sense of making crafts, not of being manipulative) people I know, and I knew that they knew this because I would make things to give to them.  Yet they never invited me to this group, and I was at a loss as to what to do.  Could I invite myself?  Was there any point, if they clearly didn’t want me there?  I was devastated, not so much by not getting to go but by feeling left out and unwanted.  I blamed myself– probably rightly?  maybe not?  I don’t know even now– for being awkward and unlikeable.  It seemed like a confirmation of the way I’d judged myself all my life.

One of the things about autism is that it doesn’t just make you awkward, it makes it impossible for you to know what other people are thinking.  You spend all your time wishing fervently that people would just tell you what they want from you.  I constantly thought, “What exactly am I doing wrong?  Why won’t they just tell me if I’m being rude or inappropriate?  Or if they just don’t like me that much?”  I expect they were sending out plenty of cues that I just didn’t have the capacity to read– my experience with watching, mimicking and practicing had taught me how to go through the motions, but not really how to understand the content.

After that experience, I distanced myself further from my “mommy friends,” because I felt alienated and unwanted.  For several years, I really didn’t have any friends at all.  I never saw or talked to anyone except family and my abusive romantic partner.  Then I went back to college and entered a new relationship, and both of these introduced me to new people who seemed to have some interest in spending time with me.  By this point, I’d further developed my skills; I understood roughly how to “hang out” and play video games or make some somewhat stilted small talk.  I finally managed to accumulate a handful of people I’d call, as the Brits might, “mates,” if not close friends, and interacting regularly with them allowed me to relax some, be myself a bit, and feel like we shared an actual connection.

That’s basically where I am now.  But I’ve continued to experience difficulty and disappointment.  I generally find that people do not take the initiative to spend time with me or call me, and that I must therefore always do so; even when I do, I frequently fail to get any response.  In some cases, I’ve interacted fairly regularly with a person, only to have them suddenly stop responding at all, or blow me off every time.  This confuses me.  Again, I am left wondering, am I doing something wrong?  Do they really not like me that much?  My best friend, my former Person of Interest, gets irritated when I worry about this, and tells me, “That’s just how friendships are.  It takes hard work, and most people don’t put in the effort.”  Okay, so if that’s the case, how do they ever manage to spend time with people other than me?  How do I develop a close enough bond that they will actually think of reaching out to me of their own accord?  How can I be sure that the problem isn’t actually that I’m screwing up in some way?

So my message to fellow autists is, keep trying, and things will get better; they won’t be perfect, but don’t feel alone when it doesn’t always work out or you have trouble making and keeping the friendships you’d like.  It’s not your fault that you can’t read people.  It doesn’t make you a bad or worthless person if you do get rejected, or think you are.  There are loads of us out here who feel the same.

And to the neurotypicals who care about autists, please, just be straight with us.  If we’re acting inappropriately or just in a way you don’t like, say so– not in a mean way, mind you, but with kindness and care.  Interpersonal relationships are harder for us than you can know, but that doesn’t mean we don’t want them and want your approval.  Maybe take the time and put out the extra effort to let us know if you do want us around, because otherwise, we’ll likely assume you don’t.  Chances are we’ve been hurt a lot, and when you just exclude or ignore us without giving us a reason, we really don’t understand why.

Disabilities and dating

I recently (7 months ago) went through the most difficult breakup of my life.  It was, and still is, so hard for many reasons, not least of which was that I was still head over heels about Person of Interest when I broke things off, but a major one of which also relates to my disabilities.

Anyone who knows anything about autism probably realizes that for autists, entering the dating scene, or any romantic interaction from flirting to sex, is a steep uphill climb.  Among the many roadblocks we face are:

1) Cluelessness about body language.  This is a definite disadvantage, since much (maybe most?) of flirting takes place via this medium.  I know when someone is interested in me if they repeatedly comment on my appearance or explicitly ask me out, but this mainly happens with creepy dudes in parking lots.  If people are sending me signals through gaze, tone of voice, or other more subtle cues, I am oblivious, and will assume they are uninterested.

2) Difficulty with daily functioning.  It’s hard to feel like you could ever be attractive when you have trouble making it to appointments, checking your mail, returning phone calls, attending classes or work, eating a balanced diet, and keeping up with self-care.  When you’re disabled, people around you begin to treat you like an incompetent child because of your different needs, and it’s easy to internalize this paternalism.  Most people are looking for an equal partner, and it’s sometimes hard to envision how you can fulfill that role when it’s difficult even managing your own life.  Of course, autists and other people with disabilities have plenty to contribute to a relationship and the world in general, but especially since we aren’t often taught that message, that doesn’t mean being disabled doesn’t affect our self esteem.

3) Fear of rejection.  A combination of my first two points enhances the indefatigability of the third.  When you assume that you are unattractive to others both because of your nature and because you can’t perceive positive reactions, each interaction assumes higher stakes.  It can be rare to find a person you really like and who you think might like you, so the idea of having your courageous advances rebuffed can be hard to take– it’s easy to assume you might never find another good dating candidate, or at least not for a very long time.  Raising the stakes makes it all the less likely that you’ll summon what social skills you’ve learned and let them know how you feel.  (In my case, this difficulty has been reinforced by the fact that my the conditions of my breakup were less than self-esteem-boosting.)

4) Nitpickiness.  People with autism are famously reluctant to change the tried-and-true methods and routines that have helped us cope with the world so far.  Having things a specific way comforts and insulates us.  If we’re lucky, we find someone very accommodating; otherwise, in long-term relationships, we gradually adjust our routines to incorporate the needs of our partners.  Either way, both readjusting to single life and opening ourselves to the demands of a new relationship, with the quirks and desires of another complex human being whom we don’t know that well yet, can be cause for extreme distress.  And once you have gotten used to being alone again, connecting with someone new can seem all the more daunting and disruptive.

5) Sensory and intimacy issues.  Personally, I really enjoy cuddling and closeness, but can’t stand abrupt, aggressive displays of affection.  Many people with autism find that pressure is soothing, while a light touch is uncomfortable.  In addition, more autists, especially women, than neurotypicals describe themselves as being on the asexuality spectrum.  Whatever the particulars are of a given autist’s sensory differences and intimate preferences, it’s assured that there will be more than a little awkwardness when getting physically close at first.  Anticipating this bump in the road deters pursuing romantic relationships.

I’m sure there are other potential complications that I’m missing, but it should be clear by now that dating while disabled is no easy matter.  And thus the extra shoe thrown into the machinery of my breakup:  I question constantly, what will my life be like from here on out?  Will I ever find another person I feel this attracted to, let alone with whom I can stand to spend my hours?  Will anyone ever show interest in me again?

So, for seven months, I convinced myself that this was the end of my romantic and sexual life.  I became totally okay with the idea of being celibate, dedicated to my other goals, not dependent on anyone.  And then– after many odd conversations with my ex-partner and best friend about my attractiveness, desirability, prospects and needs– I began to realize that I was interested in another person.

I am still struggling with this realization, and trying to determine whether the best course of action is to stick with my celibacy plans and trust that this, too, shall pass, or to pursue this attraction at risk of rejection and further hurt.  I can’t even answer this complex and painful question for myself, let alone any other disabled people, but I know that whatever path I choose, it’s undeniable that being an autist has played a crucial role in my decision.  I only hope that one day the world will be supportive and accommodating enough that the impact of these difficulties will lessen, and more and more people with autism and other disabilities will be able to freely pursue romantic relationships if that’s what they desire.

How to interact with disabled people

I asked some old acquaintances, from an autism forum I used to frequent, to tell me their worst experiences in communicating with NTs/non-disabled people.  All of those I’m quoting also have psychiatric conditions like mood, anxiety and attention disorders.  I think there’s a common thread here:

Jenny, 23, is a science major at a state university.  The lab environment is often overstimulating to her, so she has numerous accommodations from the school, but her stimming and executive dysfunction have drawn the attention of her peers.  One day while walking out of class, she overheard two students whispering about her rocking and the fact that she sometimes wears noise-reducing headphones.  “I think she has some kind of disorder,” said one of them.

Nate, 31, an actuary, plucked up the courage to ask out a woman he met at a work function.  He tried to use the skills he had learned about eye contact and small talk, but her response was to laugh a little and say, “Sorry, you’re not my type, I like more… normal guys.”

Danielle, 27, was purchasing a book while wearing an autism awareness button.  The cashier held onto her book while asking prying questions about how she took care of herself, whether she could have children, and whether she wanted to be “cured.”  She then invited Danielle to her church.

And my own recent story:  An acquaintance and his girlfriend were at my apartment playing video games, and I was explaining the controls for a certain racing game.  Apparently I started going on too long about it in ways they didn’t understand; they were silent so I looked up to see if they were paying attention, just in time to see them roll their eyes at each other.

There’s a very simple lesson to be learned here:  Don’t be a dick.  Don’t be a dick to disabled people, and don’t be a dick to anyone else.  Don’t ridicule people, overstep boundaries, make judgments and assumptions, or talk about people behind their backs.  Be a decent human being.  That’s how to interact with us.

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.

Five jokes only people with autism will get! You won’t believe number 3!

Because where’s the fun in being disabled if you can’t laugh at yourself?

How many autists does it take to change a lightbulb?  Just one, if she’s got a spinny chair.

Q:  Why did the autist cross the road?
A:  How am I supposed to know?  I can’t read minds!

Q:  What did one autist say to the other?
A:  Nothing.

An autist walked into a bar.  Then he noticed the tables had been rearranged, and walked out again.

A person with autism, a person with ADHD and a person with OCD walks into a bar, and orders herself a drink.

Submit your own in the comments section and I’ll add them to the original post.  They can be bad or not-bad as you choose.

Through a lens clearly

I have a list of therapies that haven’t worked for me.

This is not out of spite or stubbornness.  It’s because I’m starting to see a new therapist soon, and it’s important to me that they know what I’ve already tried and have not found helpful.  I don’t want them to rehash former attempts; I want them to offer me something new.

As a result, I’ve written a lot recently about therapeutic experiences I’ve had that missed the mark.  This is not meant to discount the experience of people who find a type of therapy helpful.  My assertion is always that patients are very diverse, and therapists need to be more cognizant of those differences to ensure they aren’t following a one size fits all policy.

There is a frequent misconception that if a specific therapy is not helpful to a person, it’s a consequence of the patient not understanding, not practicing what they learned, or not trying hard enough.  In some cases one or more of these may be true.  However, it’s also true that everyone has certain methods and styles that work for them, as illustrated by the fact that some therapies for the same symptom seem to be polar opposites in approach.

One example is the advice I’ve received about coping with obsessive thoughts.  One therapist and the books he gave me advocated acknowledging the thoughts and labeling them as obsessive and unhelpful, then seeking distraction through enjoyable activities.  The next therapist felt strongly that I should not label my thoughts, but should “sit with them” and accept them, and practice mindfulness and distress tolerance.

In my case, the former style has been far and away more successful in alleviating my discomfort and increasing my functionality, even though it doesn’t always work.  (Does anything?)  So I’ve adopted it into a set of coping skills that also includes healthy habits like yoga, studying astronomy, and writing, as well as not-so-healthy ones like smoking tobacco, comfort eating, and, formerly, drinking.  However, I’ve taken some flack from certain professionals who think that I am not doing a good enough job and am simply lazy for taking a road that includes playing video games and watching nerdy TV shows I’ve seen a million times (hello, TNG!) instead of meditation.  One therapy is judged more praiseworthy than another, not because it’s working but essentially because of its cultural cachet.

This perception of people as failing by rejecting a therapy results in a certain amount of shame and reluctance to speak up.  I’ve witnessed this in rehab, where one patient was going through the one-month program for the eleventh time, and a large percentage had been there at least once before.  How is it expected that following the exact same process, with all the same information and advice, will help someone who has already “failed” ten times?  At what point should we recognize that something simply isn’t working?

Twelve-step programs are another great example.  The first question most health care workers ask when you describe yourself as an alcoholic is “do you attend Alcoholics Anonymous?”  When the answer is no, there is frowning involved.  Twelve-stepping is the only therapy many therapists seem to accept for addiction, despite its flaws.

AA touts the idea that its approach is nearly always successful, and that if it doesn’t work for someone, it’s because they are constitutionally, pathologically incapable of honesty and responsibility.  In my opinion, this is a way of saying that if a person doesn’t achieve sobriety through their method, they are a lost cause because they are simply too flawed.  There is an assumption that if you don’t do AA, you don’t really want to sober up, and won’t ever succeed.

But in reality, the program is successful in only 5 to 10% of cases, akin to the success rate of any other specific type of therapy in addiction cases.  Even assuming that half the cases in which people don’t get sober through twelve-stepping are caused by internal or external factors in the patient’s life (which I consider a fairly generous concession) upwards of 45% of cases can best be explained by the simple need to find a different therapy.

Even in cases where the widespread effectiveness of a specific therapy is scientifically demonstrated, this does not constitute a reason to insist on one therapy and dismiss others in any given patient.  Naturally, if the success rate is 90% (based on a certain definition of success and method of research) then one in ten people is still not achieving optimal results.  Isn’t that a large enough percentage that it deserves a change in attitude; an increased willingness to shift gears and listen to patients about what works for them?

My favorite therapist I’ve had, who first raised the possibility of autism with me, used to say that it’s all about through what lens you approach a problem.  Two people’s respective symptoms may receive the same diagnosis, yet stem from totally different causes and require a different lens in order to clearly understand and effectively threat them.  He suggested that my autistic tendencies are likely so deeply rooted, being, of course, not a mental illness but a neurological difference, that failure to acknowledge them– particularly in treatment of my social anxiety– had probably caused a lot of my therapy to involve barking up the wrong tree.

After spending several months addressing autism issues and going over my symptoms to see if they were in accord with the diagnosis, the sheer relief I felt was like coming up for air.  I had a lexicon, for the first time, to describe my experience of life, and validation of the fact that I felt different but that the difference might not actually be a flaw.  I think the day I was tentatively diagnosed with autism began a whole new stage of my life and certainly of my mental health.

Not every experience I’ve had with therapy– as I’ve written about before– has been so positive.  If more professionals had questioned their own assumptions, listened more carefully to me, and done more research about potential therapies, it’s possible this stage could have begun much earlier, though that’s water under the bridge now.

Mental illness and developmental differences are often very isolating and alienating.  All patients deserve the relief of knowing that the first choice isn’t always the right one, and that there is no shame in speaking up for what you need.  Therapy is about the patient, not the therapist, and their well-being comes above preconceived value judgments and generalizations.