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.

Advertisements

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.

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.

A psychologist’s epic fail on autism treatment

Dear Dr. Jim,

I’ve been all over therapy, or it’s been all over me.  I’ve spent literally half my life with it, on and off, drifting from therapist to therapist and method to method, trying to find one that would work for me.  So when you let me down and violated my trust in CBT group the other day, I wasn’t shocked or even surprised.

I’m sure you have plenty of rationalizations for what happened.  You were trying to help, I didn’t ask you to stop (said to a victim of sexual violence?  Really?) or I’m just not trying hard enough.  But the fact is, your assurances of safety and disinterest were meaningless, and I knew it, because you judged me the moment you walked in the door.

I know what you saw.  A dumpy blue-mohawked young woman with a dozen piercings, rocking in my chair and rubbing my hands, staring blankly at the carpet, saying nothing and engaging with none of the other participants’ conversations.  I probably looked like something the cat dragged in to you.  I needed you to quit looking and listen to me instead, but you wouldn’t.

You tried to shake my hand and I avoided it, partly because I already suspected you had Older White Male Asshole Syndrome.  So I suppose we both prejudged, but in fairness, you were the professional in control of the whole situation and supposedly the healthy party.  And in any case, I would have loved to see you even try to prove me wrong.

In any case, perhaps that offended you, or maybe you just really hated the way I looked, or maybe you’re just a jerk, because within a minute of sitting down, you were bullying me with smug down-talking veiled only by being ostensibly directed at no one in particular.  You talked, without prompting, about how it’s “easier to make yourself feel depressed” (emphasis mine) when you “hunch over, hang your head, don’t look up and smile.”  You lectured that if you just fake something long enough, and get good enough at faking it, then you are not faking it anymore because it’s now a part of you.

By that point I was really getting quite irritated that we weren’t talking about things that might actually be helpful, as well as humiliated because it had to be clear to everyone in the room that I was the true addressee, given that I was the one looking at the floor.  So I spoke out.  I told you that I didn’t agree with you, because some people have skills that others lack, and as a result some things will always be harder for me than for most people.  Practice music all I like, I said to you, but I will not be playing alongside Yo-yo Ma, ever; lift weights all I like and I’ll still never look like Arnold Schwarzenegger, thank god.  And I can max out my acting-normal ability, but it will always be work to me.  I will never have the same experience of social situations, or of life in general, that a neurotypical person can, and the corollary is that they can’t have mine either.  Sometimes there are hard truths about people and life that we can’t just fake away.

And so it began.  An hour and a half of you badgering me with repeated phrases like “That doesn’t just happen magically” (as if that was my assertion?  Really?) and “Something will work, you just have to keep trying” (as if I wasn’t?  Just because I disagreed with you?)  Watching me get more and more agitated, pulling my hair, biting my fingers, stammering and losing my voice, trembling all over. You patronized me with leading questions:  “Tell me how you learned to ride a bike.”

Inside my brain, stupendously large eye roll.  Just make your fucking point, I’m not eight years old.

“You’ve used the training wheels long enough.  At some point you have to just take them off.”  Wow, thanks, that’s the most insightful thing I’ve heard all day, man.

“What do you think will happen if you just let yourself look people in the eye and speak up and smile?  What is that voice telling you?”

Bite me.

I clung to my ability to fight back at you because I felt so violated by your conduct, and I didn’t want to give you the satisfaction of forfeiting.  But I’m not much good in a test of mental stamina.  You sat there and watched me have happen one of the things I fear the most in life:  Melting down with a bunch of people looking at me.  Even when I broke and insisted in broken sentences that I needed to go home right away, you just raised your voice over mine and imperiously “suggested” that I “stay and try a different way of doing things.”  Thanks for that: five more people than before have now seen me lose my voice, clamp my hands over my ears and dash out of a room.  You are very, very good at this.

Regarding your bicycle sophistry, I think another analogy was more relevant.  I actually really like brussels sprouts, but hypothetically, let’s say I don’t.  But I really want to eat them because they’re healthy and everyone else in my family loves them (again, speaking hypothetically, of course; I live with the picky IRL.)  So a few times a week, I roast up a plate of brussels sprouts and force myself to eat them.  At first they really make me gag, but after a long time I’m able to get larger quantities of them down and not feel completely miserable.  However, I still do not enjoy them one bit; they are simply a means to an end.

What you were suggesting seems to be fixating on brussels sprouts and determining “something will work, I WILL ENJOY THESE FUCKING BRUSSELS SPROUTS!” and psychoanalyzing the early-childhood origins of my loathing of the humble sprout.  Whereas what I wanted to do, which seemed much more reasonable, was to say, “Okay, doc, I don’t enjoy brussels sprouts but I can eat them when I need to, so now can we move to the fact THAT MY FUCKING LEG HAS GANGRENE AND TWO OF MY TOES HAVE FALLEN OFF?”

Why is it apparently required that I love every part of myself and everything I do?  Does every quirk, every deviation, in a person really have to be hammered out in pursuit of some idea of a fully actualized, enlightened individual, whatever those words even mean?  Seriously, I come in for a transmission overhaul and you’re pressuring me to do body work first?

Yes, I don’t make eye contact.  Yes, I am not very animated but I am very fidgety.  Yes, I stare blankly and it makes me look like I’m pissed off.  No, I’m not pissed off (well, I wasn’t.)  No, I do not usually stare at the floor, but there wasn’t anywhere else to look that wasn’t covered with a person.  And guess what?  On the piece of paper in your hands there’s a little word “ASD”– I assume as a PhD in psychology you are familiar with Autism Spectrum Disorders and the initialism.  You could have shown some sensitivity to or at least acknowledgment of that, but that would have required thinking critically and taking the time to treat me like a human being.

Why is it so hard for you to accept that some things about me that annoy you, that you don’t think are normal or positive, are not in fact things I want to change?  That while they may not define me, they are part of me as I know myself, and not a part I hate?

Why is it so important to you to verify your kneejerk assumption about what I am, to justify it with contempt of any understanding I have of myself?  You had never met me once before Hell’s Therapy Session, and yet you casually didn’t deign to mention a diagnosis from a psychologist who saw me weekly for over a year, because that wasn’t what you had already decided was my Problem.

That’s honestly one of the worst things about having suffered trauma and being open about it.  People start seeing it everywhere.  You aren’t a person to them anymore, you’re just a walking tragedy.  They want to feel sorry for you, but they easily become frustrated when you don’t meet their standards of “getting over it.”  At the same time, every negative thing about you they want to ascribe to your trauma, as if it remade you from scratch.  You no longer have quirks or foibles, only symptoms.  You can’t be who you are, you can only be ill.

So congratulations on joining those ranks, on being so preoccupied with your perception of another person’s trauma that you didn’t want to know anything else.  And thank you for reacting the way you did, when you did.  It saved me a lot of trouble by confirming exactly the kind of person you are.

Regards,

-mhc