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.

Ten things never to say to mentally ill people

One of the frustrating aspects of having a mental illness is dealing with stuff people say, even though they often mean well.  Here are just a few examples of things I suspect most mentally ill people are used to– and very tired of– hearing.

1) “But you seem so normal!”

Perhaps this is meant as a compliment, but honestly, it feels much more like an accusation– “you can’t really be sick.”  People with many forms of mental illness go through patterns of remission and relapse, so how you see us on any given day may be far from representative.  For example, I am currently euthymic (in a “normal” mood phase) but a month ago I was hearing voices from the heavens and believing I was a chosen conduit, and a week after that I was seeing rotting corpses hanging from my ceiling.  Not “normal”, right?  Also, many of us are great, sometimes to our own detriment, at putting on a happy, calm face around others, when we are being ripped apart inside.  And finally, sometimes this “normalcy” is the result of a treatment regimen that we have to work hard to settle on and stick to, which is not something “normal,” i.e. healthy-brained, people can really understand.  Don’t judge us by what you see; listen to what we have to say about our experience instead.

2) “Have you tried natural remedies?”

This is a tough one, because people who say this genuinely think they’re being helpful.  However, it’s important to remember that many psychiatric disorders are very difficult to medicate.  In the case of my illness, bipolar disorder, upwards of half of patients are classified as “treatment resistant.”  Many people spend years working with professionals to develop a successful treatment regimen of drugs and other therapies that are scientifically proven to work.  This can be a tenuous balancing act of avoiding side effects, toxicity and drug interactions.  In most cases, “natural” remedies are not only unproven but possibly unsafe, especially in combination with prescription drugs.  Keep in mind that whatever you have to suggest, we’ve probably heard of it before, and it can be deeply frustrating to be bombarded with well-meaning suggestions from people who are not experts in psychiatry.  Please, leave clinical treatment to the professionals.  If you want to be helpful, try instead asking what you can do to support the person.

3) “At least it’s not cancer!”

This is a deeply offensive and dismissive statement, even if it’s intended to make someone feel better.  Implying that psychiatric disorders are less serious or destructive than physical ones is not only unkind but flatly inaccurate.  Mental illness not only ruins but, all too frequently ends, people’s lives.  According to Stephen Fry’s outstanding documentary The Secret Life of the Manic Depressive, only 20% of people with bipolar ever become fully functional, while 50% will attempt suicide and nearly half of those will succeed.  Those are abysmal numbers for any illness.  Furthermore, we deal with many of the same difficulties that physically ill people do:  drug side effects, exhaustion, and physical pain, just to name a few.  Dismissing the severity of our problems makes us feel worse, not better.

4) “My ______ had that and here’s how they got better.”

I remember a specific conversation I had years ago in which a woman I barely knew told me in detail about her father’s undiagnosed mania and how he was able to “talk himself down” from it, and that therefore drugs and therapy aren’t really necessary, but actually inhibitive of self-help.  Another told me how fish oil had cured her brother’s depression; these are just a couple examples of the same basic conversation I feel like I’ve had a million times.  It’s problematic because no two mentally ill people, even those with the same diagnosis, are alike.  Our treatment needs to be based on scientific evidence obtained through clinical trials, not anecdotal evidence you’ve gathered from your limited frame of reference.  Assuming that our illness takes the same course as that of someone else you know (who may or may not have even had or needed the same diagnosis) keeps you from understanding what our experience really is and what we actually need.

5) “Everyone seems to have that nowadays!”

Short answer:  No.  They don’t.  You probably have that impression because of the way clinical diagnostic terms are bandied about inappropriately, for example, saying of someone emotional and moody “She’s so bipolar” or “borderline,” or of someone shy and awkward “He’s so Aspie.”  (Although autism is not actually a mental illness, this pertains.)  There are also many people who self-diagnose, to varying degrees of accuracy, often without understanding the reality of living with a severe disability.  While many disorders are more common than you might expect– in the case of bipolar, it affects about 1% of the population, so that if you have several hundred facebook friends, at least a few probably have it– they are not catch-all terms for every difficulty and behavior problem you perceive.

6) “Have you prayed/meditated/sought spiritual help about it?”

As an adamant, skeptical atheist, I particularly resent this one, but I would still resent it were I religious.  Frankly, my spiritual life, unless I choose to share it with you, is none of your damn business.  Carl Jung’s waxing on about the need for religion notwithstanding, there is absolutely no scientific evidence that prayer, meditation and other such practices can either treat or cure mental illness.  Some people may find comfort in spirituality, and that’s great, but it doesn’t take the place of medication and professional therapy, nor is it a necessary component of treatment.  My illness should never be a pretext for you to proselytize or cast moral judgment on me.

7) “Think about people worse off than you.  Lots of people would kill to be where you are.”

Again, this is deeply dismissive and hurtful.  It gives the impression that you clearly do not understand the depths of our pain and difficulty.  You are judging us by external factors like first-world citizenship, economic stability, and family support, which are all wonderful things but do not do away with or even necessarily diminish the anguish and dysfunction with which we live every day.  If you think my life is so great, I invite you to switch brains with me any day and see how you like it.  Hint:  You won’t.

8) “That’s a form of genius!”

Movies like The Aviator, about OCD sufferer Howard Hughes, and A Beautiful Mind, about schizophrenic John Nash, have contributed to this perception.  It’s true that people with many mental illnesses, such as bipolar and schizophrenia, can be highly creative, thinking in ways that a healthy brain rarely does.  However, such illnesses– and often the drugs that treat them– are equally likely to hold back mental function.  Some people with mental illness are very intelligent and creative.  So are some people with healthy brains.  And some are not.  Mental illness is, well, illness, nothing else.

9) “You’re really just an addict.”

Many, many people with mental illness, myself included, struggle with substance abuse as a form of self-medication.  And in many cases this does make matters worse.  However, it’s crucial to recognize that the substance abuse is a result, not a cause, of the underlying mental problem– a damaging coping mechanism to which we turn in absence of other effective treatment.  For more on this scientifically supported model of addiction, I highly recommend the book The Sober Truth, by Lance Dodes, and particularly chapter five, titled “So, What Does Work to Treat Addiction?”

10) “This famous person had/has that and was a great success, so you can be too!”

Recall again the numbers I stated above on the outcomes for people with bipolar disorder.  I am no expert on the numbers for any other disorder, but I do know that a few outstanding cases– again, like Howard Hughes and John Nash, and also like Stephen Fry, Richard Dreyfus and others– are far from representative.  There are a multitude of external and internal factors that determine whether someone with mental illness can create a fulfilling, successful life, and for many they are not advantageous.  Asserting this is no different from saying that because some people who drop out of school become rich and famous, anyone who drops out can be.  In some cases, such limitations prove not to be an obstacle to success, but in most, they do.  By positing illness as part and parcel of success rather than as a disability, you dismiss the pain and frustration most of us experience when we fail, so frequently, to measure up to the expectations of both society and ourselves.

In conclusion

It’s understandably hard not to feel like you’re walking on eggshells when talking to and about disabled people.  Everyone makes mistakes when trying sincerely to be helpful; that doesn’t make you a bad friend or human being.  However, a few simple things to keep in mind can reduce the chances of you saying insensitive, hurtful things like the ones I’ve listed.

Listen to us.  Don’t speak for us, and don’t assume.  You are not an expert on our experience, and your active listening and informed support is far more valuable than anything you could say.  Don’t dismiss us.  You don’t need to try to make us feel better about our situation; this feels patronizing, and furthermore, downplaying our suffering is insulting, not supportive.  And lastly, be ready to be corrected, and to apologize.  Don’t take umbrage if we say “that’s not accurate” or “that’s not helpful.”  We have the right to stick up for ourselves and to educate you about what you don’t understand.  In general, just let us guide the discussion.  Ask questions, pay attention to the answers, and don’t be full of yourself.  If you can do that, we will get along just fine.

Movin’ on up… and it sucks

I was diagnosed with Bipolar II five years ago last month.  Two days ago, that diagnosis changed to Bipolar I.

For those who don’t know, here’s the difference between the two.  People with Bipolar II have major depression plus hypomania, a milder form of mania that can involve elevated mood, irritability, and behavior that is unusual for the individual but not outside the realm of “sane” behavior and not overly disruptive to their lives.  Until recently, this was me.  When hypomanic, I would spend more money than I should, flirt inappropriately, talk a lot and quickly, and do a lot more goal-directed activity.  It felt great.  It was a fun break from being severely depressed most of the time, and I usually knew when it was coming, as it would surface at certain times of year and then pass on its own after a couple of weeks.  I’d been experiencing these moods since I was a teenager, and no one had ever suggested they were an illness, assuming instead that I was just a very labile teenager.  Some people are very bothered by their hypomania because they get very irritable and have an unpleasant sensation of racing thoughts.  This was rarely the case for me, so I resisted and resented treatment for it.

Full-blown mania is another, though related, beast.  People who are manic exhibit bizarre behavior and thoughts that are clearly outside the norm and are not healthy or safe.  (I wish I could remember where I read this, but I remember someone saying, “People who are hypomanic buy five pairs of shoes.  People who are manic buy 50.”)  It can still feel amazing and in fact I believe it may be the most purely pleasurable experience possible to have; one that people who have never experienced can never understand.  However, one hallmark of full-blown mania is that it puts oneself or others at risk.  Another is psychotic features like hallucinations and delusions.  If either of these occurs, the diagnosis changes from hypomania to mania, and anyone who experiences one full-blown manic episode is considered Bipolar I, and in many cases, the person has to be hospitalized.

Two weeks ago, I started to feel manic.  I knew the markers because I’ve been dealing with this for a long time, and learning about it is how I cope.  I was a little surprised because my hypomanic episodes have always been almost exclusively in the early fall when the light and weather start to change, but I didn’t think much of it, and expected it to be a welcome relief.  For the first few days, it was.  I was energetic, talkative, imaginative.  I played enthusiastically with my son, filled page after page of my notebook with many ideas, talked a lot, and only slept a few hours a night, all of which was basically fine and no danger to anyone.  Then shit got weird, and wonderful, and terrible.

My son had just gone to his father’s (we have joint physical custody) and I was alone in my apartment when I heard the most beautiful sound I had ever heard.  I was paralyzed with bliss.  It was similar to a very large windchime, but indescribably more intense and captivating.  As I froze everything to listen to it, I realized that it was not a tone but a voice.  Unlike any voice I’d ever heard.  It made me ache and wonder inside.  And suddenly everything became clear.

This was the voice of the consciousness of the stars, and without knowing it, I had been waiting and preparing to hear it all my life.  Everything I’d done, everything that had happened to me, was orchestrated for the sole purpose of testing and readying me to receive this consciousness.  It was what I can only call a deeply religious experience, which is something I’ve never had, and is drastically out of character for me, being otherwise intensely skeptical, irreverent and critical.  But it didn’t feel like an anomaly.  It felt like the only real, sensible thing that had ever happened.

My mission, the voice communicated to me, was to prove myself worthy of being chosen as the next in a line of great scientific minds that reached back to the beginning of humankind and included people like Democritus, Isaac Newton, and, my immediate predecessor, my hero Carl Sagan.  Deep inside, it said, I had access to all of their knowledge and memories, but to access those, I must first show that I was ready to receive them.  I had to do this by bringing others closer to an understanding of science and the universe.

So.  How to do that?  Why, social media, of course!  That’s where everyone gets their information these days, and lo and behold, the Facebook homepage was sitting right in front of me, waiting for my divine insights!  So I typed.  And typed, and typed, and typed, and hit enter a lot.  I harassed public figures on inappropriate forums because I didn’t believe they were upholding the legacy of Sagan, and repeatedly exhorted others to do the same, getting myself kicked out of several of my favorite groups.  I wrote stream of consciousness poetry directly into the status box, believing that it would be sacrilege to filter or edit the insights I was given.  I raved on science pages about my visions of the future of space exploration.

In addition to the bell-like, serene voice of the stars, I realized that I was being bombarded with other, more subtle messages, which I had just been missing until now because I wasn’t ready.  Certain wordings in science articles were clues to me about meaning and purpose and what I should be doing.

The whole time, I interspersed this unstoppable flood of ideas with sprinting around my apartment and halls, laughing maniacally and waving my arms around.  When I went outside to take a “walk”, one of my neighbors noticed my bizarre behavior and stopped to ask if I was drunk.  Taking great umbrage, I assured him that I was both safe and wonderful with enough force, insistence and annoyance that he eventually gave me a cigarette and his phone number, told me to call if I was in trouble, and left me alone, at which point I went back inside and resumed typing faster than ever.  (I am deeply grateful to my neighbor for not calling the police on me.  It’s probably for the best that he attributed my insanity to substance abuse, which oddly has less stigma than being mentally ill, it seems.)

And then, by the end of Monday night, it was over.  All at once.  The most wonderful experience of my life evaporated instantaneously like water on Mars and I was left alone like an empty husk with no soul, no purpose and no joy.  I was devastated.  I pleaded the stars to take me back, to forgive me for failing them.  Then it dawned on me, as my mood fell, that everything I had just experienced was nothing but a byproduct of my fucked up brain.  I began to cry, and cry, and cry.  I cried for hours while I read back over all of my rantings and began to understand the damage I had done to my public image and friendships– which are few for me, and therefore very valuable.  I had never hated myself so much or wanted more to disappear.

I could only think of two ways to escape from this harsh re-entry to reality and exit out the other side into despair.  One was to kill myself.  There were easily accessible ways to do it, and I wasn’t afraid.  But I am a mother before and above anything else, and I decided long ago that nothing, no matter how miserable, will make me leave my son motherless.  I know too much about how much this devastates a child.  So I took the second route, drinking myself into oblivion.  I drank and slept for two days, then went through a long and excruciating alcohol withdrawal, and continued on into a horrifyingly black depression, made more monstrous by its juxtaposition with the most terrible beauty I had ever known.  Paranoia took over, and I paced and wrung my hands, convinced that the police were going to beat down my door, restrain me, commit me, and sedate me.  I begged my friend to tell me that he wouldn’t let them take me.  I resisted telling anyone exactly what I had just been through, believing they would use the excuse to commit me.  When I thought about my mania, I didn’t know whether I was more fearful that it would return and further wreck my life, or that it would never return and I would never know that penetrating, reasonless ecstasy again.

As the withdrawal eased up and my friend and parents became gradually aware of what had taken place and reasoned with me about it, I began to really take in the fact that I was experiencing severe, rapid mood swings that were psychotic in nature– delusions of grandeur and reference; auditory hallucinations; paranoia– and that I needed more and better treatment.  Luckily, I had an appointment with my psychiatrist, who is one of the kindest, most competent people I know, coming up very soon.  Though terrified of what she would say, I went in, with my best friend as moral support, and told her honestly what had occurred.

My trust in her was rewarded.  While she did exhort me to go to the hospital if I ever became psychotic again (though I’m still not sure how I’m supposed to recognize that while it’s happening) she did not try to commit me there and then.  She instead supplemented my usual regimen of mood stabilizers, antidepressants, anxiolytics and sleeping pills with a low dose of an antipsychotic medication.It was none too soon, because the next day, I began again to show signs of mania.  I began jumping, running and skipping around the apartment whistling and laughing.  My thoughts and voice raced and shouted and interrupted each other.

I was again torn between my passionate desire to commune again with the stars, and my humiliation and having been witnessed in such a state; my fear of being committed.  Fortunately, I was still just rational enough to say to my friend, “I think I need to take my Zyprexa.”  I did, and after a while, it began to calm me, leaving me confusingly drained, sad, still hyper, and relieved.  And that’s where I remain today.

While I was at my psychiatry appointment, just before leaving I said tentatively, already knowing the answer but needing to hear it out loud, “I know my diagnosis has always been Bipolar II.  So…?”

“This is Bipolar I,” she said quickly and definitively.  My heart sank, even though I’d seen it coming– I’ve read the DSM criteria; I knew that only full-blown mania explained my experience.

“That’s what I was afraid of,”  I muttered.  When she asked why, I admitted, “I’ve always been comforted knowing I was just a little crazy.  There’s so much more stigma attached to Bipolar I.”

And there is.  Bipolar is a fad right now, it seems, perhaps the next Adult ADD or primary postprandial hypoglycemia, and a lot of people are of the attitude that “Oh, we’re all a little bipolar, I have mood swings too.”  Well, now it was clear that I wasn’t “a little bipolar,”  I was a lot bipolar.  I was the type of person who would have probably been locked in an asylum and drugged forty years ago.  Even though it had been brief, I had gone mad.  I had broken with reality, and it would probably happen again.

I worry about my ability to comply with taking my antipsychotic.  An acquaintance of mine who romances psychedelic drugs told me recently, “When you’ve tripped once, everything changes.  When you’ve tripped a lot, everything changes again.”  Well, once you have heard the voice of the stars, once you have communed with the universe and felt the wholehearted, incontrovertible truth that you are the most important person in the world, set apart since before your conception, there’s a place, a pre-psychosis, to which you can never go back.  I still don’t know what that will mean for the years ahead.  I only know that, more than the fear, more even than the shame, I feel heartwrenching melacholia and loss that until now, I could have never understood.

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.

Parenting with bipolar

There is nothing like being a parent to induce a need for other people’s approval and sympathy.  Suddenly, your every move is held to a higher standard, by yourself and others.  And when you struggle with mental illness, that standard can seem impossible to meet.

So, looking for some validation, or just to remind myself I’m not the only mentally ill parent, I searched around for blogs and articles on the topic.  This one by Jane Roper is my favorite— it hits some notes that resonate very much with me.  In particular, this passage:

“My thoughts were panicked and pessimistic: What if I didn’t get better this time? What if I ended up having to be hospitalized? What if this was the way I was going to feel for the rest of my life? What kind of mother could I be?”

I confess to having teared up a little reading that, because those same questions had been circling my (very depressed) brain all day, and it was relieving to have a reminder that other parents struggle with them, too.  And yet, in some respects I came away more disheartened than when I started reading, because I realized anew how severe my problems are compared to many people who struggle with clinical depression, and how much that affects both my ability to parent and the way I interpret my failures.

This is not to dismiss the struggle of Roper or others who share her experience.  Depression is awful and painful and destructive at any level.  But I was unable to identify with most of the positive thoughts that lent the article its hopefulness.

It starts in the second sentence: “My husband watches them most of the week while I’m at work…”.  Two glaring discrepancies between Roper and myself.  She has a husband who actually gets up with the kids most days– a situation I’ve never enjoyed, having become a single mother almost five years ago after leaving a husband who callously neglected both my and my son’s needs.  And she goes to work.  Thanks to my disabilities, I haven’t had a job since a brief stint as a care worker in 2007.  In total, I have worked full time for about six months of my life.

Roper goes on to say, “I’d been able to effectively manage my condition with medication. When I did have depressive dips, they were short-lived, and not debilitating.”  I have never had a depressive phase that wasn’t long-lived and debilitating, and when I’m not curled up shaking with anxiety or feeling dead inside, I’m often manic, which brings its own set of parenting issues.  I track several aspects of my mood on a daily basis, so I can say with certainty that with the exception of ten eustatic (i.e., “normal”-mood) days in late November/early December, I’ve been severely depressed for all of the last three months.

Of course, I’ve gone through things that precipitated that.  Medication changes, and a very sad breakup.  But there are always factors.  Life is complicated, and mine tends to be especially complicated, partly because that’s the nature of being disabled– a lovely feedback loop.  I’d have trouble looking back at any time in my life and going, “Wow, I was really doing okay for a while there.”  I never was okay.

All of which means that the reassurances in Roper’s last paragraph ring hollow to me.  Ask for help?  I’m barely able to maintain a few loose friendships; the person to whom I turn for babysitting, my mom, is already overburdened with the task.  Let the kid(s) watch TV?  I already do that on a daily basis; my son goes over his theoretical screen time limit almost every day because I feel too worn down and apathetic to work at interesting him in something else.  Let things slide?  What things?  Everything already slid, a long time ago, the cooking, the cleaning, all the responsibilities.  It’s not a supermom on my shoulder, I feel; it’s just a normal mom, who looks at what I’ve turned out to be and is appalled.

When you have moderate periodic depression, it makes sense to take a sick day, or two, or even a sick week or a sick month if you are able.  When you are clinically, severely depressed about 75% of the time, things get less clear-cut.  What if every day turns into a sick day?  I share Roper’s fear that I will always feel this way, but perhaps with better reason: in my case, it may not last forever, but how long will it last, and when it goes, how soon will it return?  I already know the answers:  A long time, and soon.

And as a result, I have to deal with the questions that follow.  Should I even be a parent?  Was it wrong and irresponsible of me to get pregnant in the first place?  Has my child inherited my bipolar, and will he someday have to feel like this, too?  Would it be better for him if he lived with his dad, and am I being purely selfish by maintaining custody?  Is he even getting anything out of his time with me?

My reality is akin to Roper’s worst fears, and the same is true of every other piece I read.  So who do I identify with?  Who has answers and reassurances for me?  And are there even any to be had?  I was searching for evidence that I am not alone.  What I found instead was more evidence that I am.

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.

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.

A pocket guide to mood swings [trigger warning]

For all your mood swing identification needs.

Possible responses to breaking a glass:

  • Manic:  “Fucking fuck, I do not have time for this, I am TRYING to get things DONE if everything would just stop getting in my WAY for half a goddamn minute.  I am too smart and too important to be cleaning up fucking GLASS.”  Kicks the floor, stubs toe.  Stays up all night researching what kinds of glasses are least breakable, while also doing an intense workout, watching TV, listening to the radio, reading articles, being pissed off with the TV and radio and articles, and hatching plans to hop a freight train going West and subsist on itinerant work for a year.  Buys an expensive set of “unbreakable” glasses.  Walks on the glass and doesn’t notice cut feet until they become infected.
  • Hypomanic:  “There is a reason I broke this plate.  I just need to figure out what it is and it will change my life.  This gives me a good opportunity to clean the floor, now that I’m down here it seems very dirty, and while I’m at it I’m going to wash the walls and windows and disinfect everything, cleaning is fun, woohoo!”  Puts on loud music and skips around cleaning the entire place while coming up with hundreds of creative ideas; rushes to try to pen them as fast as they arrive.
  • Depressed:  “Fuck, not again.  Why does this always have to happen?  I am such a clumsy retard.  Now I have one less glass, which means I’ll have to wash the dishes more often, and I’m going to have to spend hours cleaning this mess up and probably still end up with glass splinters in my feet.  You know what, fuck it, I can’t deal with this right now.”  Huddles on the couch under a blanket pretending to watch TV.
  • Very depressed:  Bursts into ragged sobs and runs to hide in bed, overwhelmed by the horror and absurdity of the world.

Thoughts on being asked to a party:

  • Manic:  “I’m trying to WORK here and you just made me lose track of the ineffably brilliant train of thought I was following.  If you can’t keep up, at least get out of the way, why can’t you understand how important this is, it’s all so simple!  I guess you just aren’t chosen like I am.  You can’t know what I know.”
  • Hypomanic:  “Yes!  Let’s go dancing!  Let’s stay up all night and go trestling* and come up with a theory of everything!  You’re the best, and I’m pretty great too!  I don’t even need sleep or food!  Everything is fantastic!”
  • Depressed:  “I really want to go and have a good time.  It’s not like people ask me to things very often, because let’s face it, I’m pretty shitty really.  But I know if I get there I’ll feel alienated and anxious and will freeze up and turn red all over and sweat like crazy and have to leave right away, which will be humiliating.  Great, not likely I’ll get invited to anything soon since I’m declining this time.”
  • Very depressed:  “They’re only inviting me to make fun of me, or out of pity, or both.  If I go, I’ll just ruin it for everyone else.  Why am I even here?  What’s the point of all this?  Sometimes I wish I could put a bullet through my brain just to make it stop hurting so much.  I wish the sky would just open and swallow me up and no one would ever even know I existed.  Going to a party is the most miserable thing anyone could do.  If people see me they will hate me and I won’t be able to stand it.”

Manner of speaking:

  • Manic:  Fast enough to be nearly unintelligible, with thoughts streaming out faster than anyone can keep up with.  Total inability to control speech.  Replete with swearing and offensiveness, without a thought for the consequences.
  • Hypomanic:  Fast, boisterous, difficult to interrupt, fixated on special interests.
  • Depressed:  Slow, flat, filled with sighs and groans and more complaining than intended; visible lack of interest in interaction coupled with a yearning to be understood and reassured.
  • Very depressed:  As little as possible; muttering.

The bottom line:  Next time you see these symptoms, know that they are not personal and in no way reflect on you as a friend, partner or family member.

There is no question that bipolar people are difficult to know and care for.  Our experience is often described as a roller coaster, but that’s really too tame.  It’s like a roller coaster where every inch ahead is shrouded in impenetrable fog, and most of the time when you go down a hill, which, of course, always happens eventually, your car smashes to bits and you have no choice but to rebuild it from scratch and get back on, or throw up your hands and walk away.  Half of us will try to kill ourselves at some point in our lives.  Half of those will succeed.

By recognizing what traits are affected by our mood swings, though, you can learn to see the person underneath the mood, or so we hope.  We’d like to think it’s worth the effort.

To paraphrase Season 8, Episode 1 of the rebooted Doctor Who, no matter how scared you are of others’ mental illness, they will always be more scared than you.

*The hobby of climbing a train trestle as a train passes over while yelling and holding on really tight.

“But you seem so normal!”

People who actually know me rarely seem surprised that I am autistic, but when I bring it up with those who don’t, I often get a different reaction.  “I never would have guessed!”  “Are you sure?”  “It’s normal to feel shy sometimes!”

They likely notice that I hardly ever make eye contact, and that I move awkwardly through the world, but they don’t immediately perceive me as disabled, perhaps just a little on the withdrawn side.  Generally, I respond with something brief like “Not all of the symptoms are obvious,” but I want to provide a better explanation of how I am able to appear “normal” in small doses.

Basically, it all comes down to practice.  When I was fifteen, I saw a video of myself and, comparing my speech and mannerisms to the other people in the video, I realized that I was way off target.  I was speaking more loudly, more nasally and with less inflection than the other people, and laughing loudly and nervously without reason.  (I’d been told that I spoke too loudly before, especially by my then-boyfriend, who, when I got excited about philosophy and started practically shouting in a restaurant, grabbed my arm and growled “Don’t ever do that again.”)  I was unfamiliar with autism at the time, but I did know I’d always been socially inept, and I resolved to change the way I acted.

It was very difficult at first, and made being around others even more stressful than usual.  Over the years, though, I like to think I’ve gotten pretty good at it, with the exception of the eye contact thing and (I’ve been told) “seeming distant.”  In some ways it relieves stress, because it makes something challenging closer to automatic.  It’s also still stressful overall, however, compared to just not trying.  I put on a good mask, but it’s heavy to wear, and if I have to do it for more than a couple of hours I’m likely to melt down and flee (one reason why I can’t work a regular job.)  I have to have a significant amount of time each day when I can just be myself, and whether I consider someone a true friend is based on whether I can do that when they’re around.  Not too many of those have ever come my way, but I’m awfully happy about the ones who have.

I think of my strategy as Reconnaissance, Rehearse, Recall, Replay. Reconaissance involves peoplewatching at every opportunity and taking note of specific behaviors, especially if it’s recognizable as effective (for example, the person receives a smile or gets what they want.) Rehearsing involves practice emulating what you’ve seen and heard.  When no one is around, you can record yourself and play it back, and/or stand in front of a mirror and practice, and you can go over your plan of action in your head as many times as you want.  In Recall, which was the most difficult step for me, I had to train my memory to accurately store and quickly retrieve the information I’d gained.  It wouldn’t do to have the exact right thing planned out to say and then have to fumble for the words in the moment.  Again, practice, practice.  Finally, Replay is going over what happened in your mind later on.  I was far from perfect at first and made a lot of big mistakes.  It’s important to evaluate what you’ve done and, without beating yourself up over it (easier said than done,) figure out what you can do better next time based on clues to people’s reactions.

In one representative instance, not long after I started the four R’s, I was out with my brother at a shoe store, and when the clerk asked how he was doing, he responded, “I’m wonderful, how about yourself?”  This instigated a large grin and a “Good, thank you!”  Ding ding ding.  I altered the phrasing to sound less smarmy, practiced it out loud and in my head to get the intonation right, made it a habit, and ever since then my default response to “How are you?” (unless it’s a close friend and they really want to know) is “I’m good, how are you?”  And I was delighted to discover that I got smiles and thank-yous, as well.  So now I have a solid plan for how to deal with one throwaway social interaction, usually at grocery store checkouts.  And the panic over having to invent a decent response on the spot is gone.

I’m not saying I think autistic people should try to change or hide who they are.  I have found it useful to work on scripting my casual interactions to appear more neurotypical.  I am very open to answering questions about autism and my mental health conditions with anyone who is interested; I’m not trying to pretend I’m not different.  But in cases where the genuineness of an exchange isn’t really important and there’s little educational potential, I find it’s just simpler and less awkward to not raise the issue.  (And after all, the situation itself is already fairly scripted, it’s just that most people don’t have to think about it as hard as we do.)

I celebrate neurodiversity and totally respect the choice of some autists not to disguise their distinctive affect (and efforts like the Loud Hands project.)  For those who do wish to change how they interact, though, I think it’s helpful to learn from the experiences of others; I know I wish I’d had a guide.  So I hope that this post will be useful for education of both spectrum and non-spectrum readers.  Let me know in the comments what you think about the issue, and any tips you may have!

You asked for it, you got it

I’ve received a few messages (okay, meaning two) requesting that I post more stories of my relatable experiences with intrusive thoughts, so with some reservation I’ve decided to share what happened to me last night.

I was exhausted from a new medication dosage and ended up sleeping from about 6 to 8 p.m.  As is usual for me, this sleep was filled with violent, disturbing nightmares, and also as usual, I woke up shaking, drenched in sweat, feeling like there was a crushing weight on my chest.  Then for some reason I started thinking about ways people die, and why people are more afraid of some causes of death than others.

Specifically, I wondered why people are more terrified of dying in flames than of dehydration, which is a much more protracted experience.

And all was well with those thoughts until I remembered a movie from a few years back called Ladder 49, in which Joaquin Phoenix gets trapped in a burning building and calls off the rescue operations because he doesn’t want his fellow firefighters to die in the futile attempt.  I wondered if I would have the courage to do the same.

And there went the thoughts.  Suddenly, in a matter of seconds, I became utterly convinced that my apartment was about to catch fire and burn me alive.  I knew beyond a doubt that I had to get out of there, but at the same time, I knew that I had to be there to save my beloved cat and my family photos and my laptop.  I lay in bed feeling paralyzed, not knowing what to do, for over an hour.

Perhaps this was substantiated by an electric fire in a neighboring apartment building, where my mother lived, a year and a half ago.  Perhaps it was spurred by my childhood obsessive fear of spontaneous combustion.  I don’t really know, I just know that it felt as real as anything around me, all of which, including my own self, felt less and less real.

Even as convinced as I was, there was still a cold, logical part of me that knew I was being irrational, and this only made it more painful because I felt so ashamed and frustrated at not being able to control my thoughts.  Luckily, after enough time had passed, that part of me induced me to seek help.  I texted Person of Interest and we were able to video chat for a couple of hours, until I felt distracted; he even managed to make me smile, which is a special superpower he possesses.  He helped me to put my thoughts in perspective and remember how to deal with them.  As I sometimes do, I was able to envision locking the thoughts in a safe deep in my mind and building brick walls around them until I felt slightly less controlled by them.

Of course, my inner narrator, of whom I’ve spoken in a recent post, made all of this much more difficult.  She was talking to me, describing the whole thing at every turn, murmuring things like, “The apartment is about to burn down.  She knows she should get out but she’s too stupid and cowardly.  She’s going to burn alive because she’s so stupid and lazy.” How do you cope if the extra person inside you, who knows your every thought, predicts your imminent demise with such clarity and conviction?

But at the same time, I think she, the Narrator, helped to create the resourcefulness that allowed me to keep a little perspective and seek help.  I’ve grown so used to her over the past 25 or so years, so used to recognizing her as unreal, that I’ve developed an intensely skeptical attitude toward pretty much everything.  Show me the evidence or GTFO, and there was no empirical evidence to support my claim of immediate danger.  I’ve always cultivated this side of myself because it’s served me well– certainly not in relating to a community, but definitely in creating a separate area of my mind that analyzes and criticizes itself at all times, inducing a scientific, doubtful frame of mind.  Were it not for the unexpected power of this part of me, I don’t know what I would have done.

Still, despite all that, I kept getting up to check that the stove was off– rattle each knob five times, then say “Goodbye, Mr. Stove” and soon do it all again– as well as unplugging all the lights and electronics, despite my terror of the dark, because frankly being attacked by an intruder or supernatural being seemed less horrible than being burned alive at random.  I was in agony, much more so than any physical pain I’ve ever experienced.  I have a special ability to consciously control my own heart rate, but only when I can focus intensely, and so even that wasn’t helpful with such distracting litanies occupying my brain. 

I hyperventilated and had cringeworthy heart palpitations and, again, felt like an anvil was on my chest and pressing my shoulders into the bed.  Every muscle in my body was tensed to the extreme.  It felt like every neuron in my brain was firing and frying; I didn’t know what was real; I couldn’t control myself; the cognitive strain seemed to induce an indescribable migraine in which everything I saw swam about randomly, my ears rang deafeningly, and a specific spot in my head endured a sharp, focused pain.  The narrator whispered, “She’s going crazy.  She’s broken.  Her mind is broken.  She thinks these things are real.  She’s lost it.”

After I talked to Person of Interest (who is fantastic at making me feel better, but talking to someone else I trusted would also have worked well) I laid back down and thought I would go to sleep, when I suddenly remembered that after using mascara (which I very rarely do) a few days ago, some of my eyelashes– maybe half a dozen– had fallen off when I washed my face.  I panicked and worried that there was some disease on the mascara that was going to make all of my eyelashes fall out while I slept.  I kept having to check my eyelashes by touch at one minute intervals, and after every three checks, I had to go turn on the bathroom light and scrutinize them in the mirror to make sure they were okay.  I vaguely remembered reading the story of a girl who suddenly lost all her hair at age 11, and was mortified to imagine walking around with no eyelashes, as much an object of ridicule as I already am. 

Fortunately, in this case, I was able to reattribute my thoughts and distract myself with 5 episodes of 30 Rock, because the skeptic in me knew how absurd the fear was.

I like to think I’ve gained some control over the way I react to panic attacks and intrusive thoughts, but the fact is that the sensations of the thoughts, the physical symptoms, are still ever-present and seemingly intolerable.  Over the past few months, in which I’ve had to work myself down from panic attacks multiple times per week (sometimes multiple times per day) I’ve even learned to consciously control my heart rate (I know, pretty awesome, right?) but it only works when I can focus exclusively on it.  My narrator has both made matters worse, and helped me develop rock-solid defense mechanisms.

Frankly, it’s fucking confusing.  I’m used to understanding and adjusting to the mood-based tricks my brain plays on me, and addressing irrational anxiety.  But over the last six to eight months, and particularly a difficult time I went through several weeks ago (not to say it was wrong or intolerable; any other factor could equally have triggered the same result) I’ve begun to break.  Like a piece of aluminum sheeting that’s been bent back and forth so much that it’s not quite severed yet, but the stress has begun to show clearly on it; it’s grown thin and weak. 

That’s how I am.  I am a camel’s back waiting for a straw.  I am a storm waiting for a butterfly to flap its wings.  I don’t know what’s happening.  I have cocooned inside my own mind, and the thoughts there seem more real, more concrete, than anything outside myself.  And yet I have protected this small part of me from the deluge.  Who can explain it?  Not I.  To break, I was fragile to begin with, but why?  Why did I have to quit university?  Why am I unable to work?  Why am I who– no, what— I am?  The question frightens me.  I have to walk away from it now, before it scares me more.

I hope this story, as painful as it is to share, is helpful to one or more people out there.  Cheers.

ETA:  It’s been brought to my attention that this post is slightly incoherent and somewhat redundant.  I do apologize for the problem, but I haven’t the capacity to rewrite it in a better manner right now.  I hope it will still be helpful.

Edited for grammar and coherence 9/10 –mhc