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.

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.