Category Archives: Emotions

Emotional Dysfunction: Alexithymia and ASD

January 31, 2013 musingsofanaspie 83 Comments

A typical aspie-NT conversation about feelings:

NT: What’s wrong?

Aspie: I don’t know.

NT: You look upset.

Aspie: . . .

NT: Are you sad? Angry?

Aspie: I don’t know.

NT: It’s okay. You can tell me.

Aspie: . . .

NT: Fine. Don’t tell me. I was just trying to help.

When an aspie says they don’t know what they’re feeling, it’s a literal statement. We aren’t trying to dodge the conversation. We aren’t withholding information. We aren’t being rude, mean, cold coy or vindictive.

I’ve had variations on the above conversation many times and it’s as frustrating for me as it is for the person who wants to know what’s wrong. The reason? I have difficulty identifying my emotions and even more trouble verbalizing them. Working through my emotional constellations has helped me identify some of the specific issues I–and many autistic people–have in processing and identifying feelings.

emotion — *(Photo: Joe Shlabotnik / Creative Commons)*

Predictably, I’ve grouped the issues into three general categories:

modulation (moderating the strength of my own emotions)
determination (identifying emotions in others)
discrimination (separating emotion directed at me from general expression of emotion)

Modulation: The Glitchy Volume Control

There is a common misconception that autistic people are unemotional. You’ll often hear this refuted by autistics themselves, who say they are too emotional. So which is it? For me, it’s both. My emotions gravitate toward the extremes of muted or intense; few emotional experiences fall in the midranges.

My default emotional state is neutral. I don’t feel especially good or bad. I’m present in the moment and content to be so. Externally, I may come across as serious or subdued, but reduced expressiveness shouldn’t be confused with a negative state of being or a lack of feeling.

The feelings are definitely there. Most of the time they quietly mind their own business and I need to consciously check-in to see what they’re up to. When they decide to fully surface on their own, however, they’re intense.

Unlike most neurotypicals, I don’t have a lot of ability to modulate the strength of my emotions. Imagine a radio with an on/off switch and a glitchy volume control.

If you think about this in terms of the weak executive function associated with Asperger’s, it makes sense. Humans use reasoning, rationalization and labeling to modulate emotion. All of these methods fall under the umbrella of executive function. Labeling emotions, in particular, seems to be hard for aspies.

Determination: The Broken Mirror

Just as I have difficulty labeling my own emotions, I have trouble identifying what others are feeling. I struggle with interpreting facial expressions and body language. I’m weak at perspective-taking. Basically, when it comes to reading emotional clues, I’m like one of those old-time detectives who had to solve murders without any forensic evidence. There’s only so much information you can gather from what people tell you outright.

This difficulty determining what others are feeling is a big contributor to the stereotype of the empathy-deficient aspie. If someone is giving off “I’m sad” cues that I fail to recognize, when I don’t console them, they’ll assume I’m cold and unsympathetic.

For neurotypical people, emotional interaction is like looking in a mirror. They expect to see a reflective emotion looking back at them and when they don’t, they assume the mirror is broken.

This isn’t to say I’m oblivious to other people’s emotional states. I get the obvious ones and the ones that I can derive from contextual clues. What I tend to miss are the subtle or unexpected emotional states.

Discrimination: Missing the Target

I’ve always been disturbed by confrontation and conflict, even when I’m only a bystander. By default, The Scientist is in charge of “confrontation with others.” If something needs to be argued over or complained about–a botched repair job or an over-cooked restaurant meal–that’s his department. While he’s making that phone call or waiting for the manager to appear, I go off and hide.

As an adult, I’m not proud of this. Why do I desperately need to flee a situation to which I’m nothing more than an observer?

Because, I recently realized, I don’t discriminate between anger that is aimed at me and anger in general. When someone is angry, I invariably feel like I’m the cause or the target, even when I rationally know that I’m not.

If The Scientist calls me after a bad day, I hear how upset he is and immediately feel distressed. Not distressed as in “I should console my husband because he’s had a bad day.” I feel distressed in a “this is incredibly stressful and I want it to stop” kind of way. My brain immediately goes into “fix it” mode, searching for a way to make the other person feel better so I can also relieve my own distress.

Of course, a conversation with an upset spouse is upsetting to most people. But what about a conversation between two strangers that I’ve merely overheard? Twice in the past two weeks I’ve witnessed one person berating another for an etiquette infraction at the swimming pool. (Yes, we take our lap swimming seriously around these parts.) Both times I felt my heartbeat skyrocket, as if the anger was directed at me. In reality, I’m sure neither of these people even noticed I was standing nearby.

Even now, as I’m sitting here in Starbucks typing, the woman at the next table is telling a story about how mad she is at her sister-in-law; I can feel my blood pressure rising at the tone of her words. Words that are completely irrelevant to me. Words that, thanks to my funky brain wiring, I find impossible to tune out.

Yes, not only does my autistic brain not know how to interpret the emotional content of other people’s conversations, it also refuses to tune them out. And people wonder why we aspies like to spend a lot of time alone.

It took me a long time and a lot of thought to figure out why I respond to secondhand distress like this. Why should I feel emotionally assailed when the angry words are aimed at another person?

In part it’s related to my upbringing, but there is also an element of weak executive control at work. In theory, I should be able to rationalize away my overreaction by telling myself that I’m observing generalized anger (or frustration or sadness), not anger directed at me. I should be able to put myself in the other person’s shoes and direct my emotions at the target of their distress, rather than feeling like the target myself.

Alexithymia

The three areas where I have difficulty–modulation, discrimination and determination–are actually core traits of alexithymia.

Alexithymia (literally: having no words for emotions) is impairment in identifying and describing emotions. Specifically, it’s characterized by:

difficulty identifying feelings
difficulty distinguishing between feelings and bodily sensations related to emotional arousal
difficulty describing feelings to others
impoverished imagination and fantasy life
a stimulus-dependent, externally oriented cognitive style

When I look at the list of alexithymic characteristics, I also realize that when I’m emotionally uncomfortable, I’m more likely to have physical complaints. I’ll be feeling frustrated or sad, but complain that I’m uncomfortably cold or intolerably sleepy. This isn’t a connection I would make on my own, but once I see it described as part of alexithymia–like so much about my autistic self–it suddenly makes perfect sense.

There is a lot of overlap between alexithymia and ASD, both in the perception of emotions and the difficulty in verbalizing feelings. Not only are autistic people very likely to exhibit the characteristics of alexithymia, their parents are as well. However, many non-autistic people also have alexithymia, so it isn’t exclusive to ASD.

Alexithymia isn’t a clinical diagnosis like autism. It’s a construct (theory) used to describe the traits of people who have difficulty verbalizing emotions. It’s also a helpful way of thinking about some of the challenges that aspies have with processing feelings.

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The Empathy Conundrum

January 17, 2013 musingsofanaspie 136 Comments

Let’s get the hard part out there first: I lack empathy.

By lack, I don’t mean a complete absence of empathy; I have an empathy deficiency. If most adults are “doing empathy” at the calculus level, I’m still in Algebra II and solving for X in ways that would make your head spin.

Before I discovered the online autism community, I assumed that my impaired empathy was typical for someone with Asperger’s. Much of the published literature includes impaired empathy as a common AS trait. “Lack of social or emotional reciprocity” is one of the diagnostic criteria. My own experience didn’t disprove that.

Then I discovered the online ASD community and suddenly felt like I needed to hide my struggles with empathy. Everywhere I looked people were refuting the notion that autistics lack empathy.

Again and again I’ve encountered discussions about empathy online and quietly slunk away, feeling like there was something wrong with me–like I was a “defective” autistic.

I Googled empathy–probably one too many times. I read the long list of definitions at Wikipedia . I read Simon Baron-Cohen’s writing on the subject and felt the same anger others have expressed at his biases. I read looooong threads on Wrong Planet and Facebook. I revisited the diagnostic criteria. I combed through the #actuallyautistic tag on Tumblr.

The more I read, the more confused I became. I started to wonder if I was talking about the same thing others were talking about when I use the word empathy.

So let’s talk about that. What is empathy, exactly? What are we talking about when we talk about empathy?

Sympathy vs. Empathy

Empathy, in the most basic sense, is the ability to understand and share an emotional state with another person.

As an adult with a good amount of life experience, I can often understand the emotional state of another person. I know that if someone’s dog has died, they’ll feel sad. Most people probably come to this conclusion in a more instinctive way than I do, but I get there all the same.

Depending on the situation, I may share an emotional state with another person to some degree. I know how I felt when my dog died. Logically I know that the other person feels very sad. If I knew the person’s dog, I’ll feel a sense of loss myself, and that will contribute to my sharing their emotional state. However, I rarely experience a strong emotional reaction to another person’s circumstances.

That’s not to say that I don’t experience concern toward other people. Simple concern for others, though, isn’t so much empathy as sympathy. Sympathy is a concern for the wellbeing of another person. It can exist in the absence of the empathic act of sharing an emotional state with that person. It often arises from empathy, but it doesn’t have to.

When my daughter says she’s had a bad day at work, even though I find it hard to share her emotional state, I sympathize with her frustration or sadness. I don’t know what it feels like to get a phone call from a suddenly homeless student. I can’t truly share what my daughter is feeling as she tells me about the experience. But I do worry about her ability to cope with the situation. I understand how important her work with is to her. I hear the distress in her voice and want to do what I can to offer comfort.

In this type of situation, I have a great deal of sympathy, regardless of how strongly rooted in empathy my concern is. My sympathy doesn’t always come across like a neurotypical person’s sympathy would–okay, it rarely does–but it exists just the same.

The Challenges of Perspective Taking

The examples I used above are fairly explicit in terms of the emotional content of the situation. Both a dead dog or a student who’s been kicked out of her home have obvious contextual clues to the emotions that are present. Even my rudimentary empathic radar is going to pick them up.

Where I struggle most is in subtle situations. I often say things that other people consider insensitive and then I completely miss their wounded reaction to my comment. Why? Because I didn’t know that my comment was insensitive in the first place and I have trouble reading nonverbal communication.

Think about it. If you didn’t know someone’s dog had died, would you find it easy to understand and share their emotional state? Probably not. You’d pick up that something was wrong, but you wouldn’t be able to truly comprehend how they felt until they explained the source of their distress.

For me, all the little things that people communicate nonverbally or hint at or imply are like a whole bunch of secretly dead dogs. Until some says, “your comment hurt my feelings because ________” all I have is a vague feeling that something is off. Maybe not even that.

This is why I “failed” the Sally-Anne test. Twice. I failed it when I first discovered it early in my reading about Asperger’s and then I failed it again a few weeks ago, because it was presented in a slightly different format. Yep, twice.

You can argue that the Sally-Anne test has little to do with empathy. It’s true, the Sally-Anne test doesn’t predict the emotional dimension of empathy. Taking the test doesn’t require you to share an emotional state with Sally. It does, however, require you to set aside your own knowledge of the situation and take Sally’s perspective.

This is where a more precise definition of empathy comes in handy. Empathy actually has two components: cognitive (perspective taking) and affective (emotional response to another’s emotional state). The Sally-Anne test is a test of cognitive empathy, which is impaired in people with Asperger’s. However, when it comes to affective empathy, according to a 2007 study* aspies are on par with neurotypicals.

So. Affective empathy? We have it. Cognitive empathy? Not so much.

This is why I can fail a simple test twice, even when I already know the “answer.” I automatically default to my own perspective. I can take another person’s perspective, but it often requires a conscious decision on my part to do so. This seems to be something that’s silently implied in the general, vague, oft-used notion of empathy: that one can spontaneously and instinctively understand and share an emotional state with another.

When I say I have an empathy deficiency, I mean that I struggle with taking the view of another person spontaneously and instinctively. I lack cognitive empathy.

Too Much Empathy?

Over and over again I see references to autistic people having too much empathy. While I think the people using this phrase mean well, I’m not sure it’s accurate. Is an autistic person who feels overwhelmed by an emotional situation truly sharing and understanding the emotional state of another person too much or are they overwhelmed by an inability to regulate their own reaction to a highly-charged situation?

Generally, when I feel emotionally overwhelmed by another person’s emotions, it’s related to my alexithymia (emotional dysfunction). In short, I have trouble regulating my own emotions and I have trouble discriminating between emotions that are “aimed at” me and emotions that are “aimed at” someone else. If I encounter two people having a shouting argument, my emotional reaction is the same as if I were the target of their shouting, as if they were both angry at me.

I don’t think this is empathy. I’m not sharing their emotional state (anger) so much as feeling like the target of it. If I were sharing the emotional state of the people in the shouting match, wouldn’t I feel like shouting at someone, too? Instead, I feel frightened and intimidated. I feel an intense need to escape from a situation to which I’m nothing more than a bystander.

In fact, in this kind of situation, the only person I’m thinking about is myself and how uncomfortable I am. There I go again, taking my own perspective. My distress at the situation might outwardly appear to be empathic but my internal reaction is a great big “MAKE IT STOP, NOW.”

This type of reaction is mentioned in the 2007 study I referenced earlier. The researchers found that the aspies scored significantly higher on a scale of personal distress than the neurotypical group, indicating “a greater tendency to have self-oriented feelings of anxiety and discomfort in response to tense interpersonal settings.” Note the use of self-oriented feelings in that sentence. Empathy by definition describes a state shared with others; an overabundance of self-directed anxiety or discomfort is not the same as “too much empathy.”

The Right Way to be Autistic

Circling back to what got me started on this post: the subtle implication in the discussion about empathy that there is a right way to be autistic and that right way includes having empathy or too much empathy. And perhaps as a corollary to that: autistics who have too much empathy are doing their part to subvert the stereotype of the unfeeling autistic.

That was probably an unpopular paragraph. If you found it offensive or upsetting, take a moment to stop and think about why.

Is there any difference between the subtle pressure to (appear to) have empathy and the subtle (or not so subtle) pressure to not stim in public or to make eye contact? Is advancing the belief that all autistics have empathy another way of making us seem more normal? Is there a difference between pressure to not look different outwardly and the same sort of pressure to not feel different inwardly?

Empathy is often philosophically framed as a fundamental element of the human condition. Without it, are we somehow less than human? What if we have impaired empathy–is our humanity impaired?

Choose Your Words

Perhaps we need to be more thoughtful about how we use the word empathy.

Empathy is not interchangeable with sympathy.

Empathy is not interchangeable with emotion.

Empathy is not interchangeable with emotional overload.

Empathy is not some hoop to be jumped through to prove to the world that we may be autistic, but it’s not that bad because “oh look, we have empathy just like you!” (Even if we do, in whatever form. There should be no burden of proof.)

Empathy has many definitions, but they all have at their core understanding the emotional state of another person.

When I say I lack empathy, what I mean is I have a deficit in understanding the emotional states of others. Hell, I have a deficit in understanding my own emotional state at times.

"I lack empathy" simply means that "I have a deficit in understanding the emotional states of others." — “I lack empathy” simply means that “I have a deficit in understanding the emotional states of others.”

This doesn’t mean I’m unsympathetic.

It doesn’t mean I don’t care for others.

It doesn’t mean I can’t show concern.

It doesn’t mean I have no emotions.

It doesn’t mean I don’t get overwhelmed by other people’s emotional states.

It doesn’t mean I’m any less human than you are.

What does it mean then?

That I may need more information than a typical person to understand a social situation. That my reactions to your emotions may be unconventional. That I have to work harder to grasp what comes naturally to most people.

Simple as that. Nothing more, nothing less.

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*Thank you to Pi for pointing me toward this study. It turned out to be the missing link in wrapping this post up.

For a mom’s point of view on this, check out Does My Child Lack Empathy? by Jeanie at Reinventing Mommy

Emotions

Sadness

December 16, 2012 musingsofanaspie 5 Comments

Sadness feels like the emotion that is most strongly connected to humanity–the one that binds us to each other in some important and primitive way.

I can be happy by myself. I’m as likely to be angry with myself as with someone else. But sadness–I usually need another person to tip me over into feeling sad.

Like my anger constellation, my sadness constellation required a thesaurus. Once I got past grief, depression and resignation, I needed help identifying other types of sad feelings. But unlike my exploration of anger, the thesaurus wasn’t much help this time. I added a few more words to the constellation, but I’m not sure how strongly I experience any of them.

My sadness constellation, sketched out on a Starbucks napkin

Sadness feels like a diffuse emotion, more of a background state of being than a tangible feeling. I’m rarely “actively” sad. I don’t burst into tears when I hear sad news. The last time I cried at a movie, I was twelve. The only book that ever made me tear up was A Prayer for Owen Meany. More than once I’ve sat stoically immobile beside someone I love while they broke down.

My sadness is all undercurrent, twisted up inside me, unable to escape to the surface. This, of course, makes me look cold and unfeeling. The stereotypical cold-hearted aspie.

The first time I confronted my muted sadness was in high school. Junior year. A girl in my class, Karen, was killed in a car accident. The entire junior class attended her funeral, and everyone sobbed from beginning to end. Except me.

I remember standing there, my best friend crying against my shoulder, and feeling . . . confused. I barely knew Karen. She was one of the “fast” girls, part of a small clique that didn’t mix in with the rest of the class much. Many of the girls crying that day in church wouldn’t have hesitated to whisper something mean about Karen or her friends when she was alive. Yet here they were, brokenhearted. This made no sense to me.

Of course I felt sad that she’d died. It was a horrible tragedy. But obviously I didn’t feel as sad as everyone else. If I had, wouldn’t I be crying, too? Soon this thought consumed me. In desperation, I tried to make myself cry by thinking of sad things, by focusing on how sad this day was. I squeezed my eyes tightly closed until they started to water. A few teardrops fell but mostly what I felt was a sick, sinking panic.

While everyone was mourning the loss of our classmate, I alone was wondering: What’s wrong with me? And afterwards, while everyone was getting drunk to soothe their pain, I was hoping that if I got drunk enough, I’d somehow gain access to this mysterious thing called grief.

While I’ve experienced loss since then, my experience of grief is uneven and unpredictable. Sometimes my reaction to death is a sadness so strong and overpowering that it becomes physically painful. Other times I feel like my grief is strangled inside me with only the smallest of escape valves to trickle through. In this sense, grief frightens me. I feel like I haven’t practiced enough and when the big day comes, I’ll be unprepared, like a boxer entering a title match with only a few amateur bouts under her belt.

The rest of my experience with sadness is no less confusing. Most often sadness equals resignation, that sinking feeling that no matter what I do, the underlying characteristics of a relationship or a situation will never change. I used to be more of a fighter, wanting to fix everything and everyone, but increasingly I’m resigned to what is.

This is good and bad. Good because I’m relinquishing my intense need for control; bad because resigning myself to a situation can feel like giving up, and giving up can lead to hopelessness. I put a question mark next to hopelessness because it’s rare and transient. I’m an optimist at heart and if studying economics taught me anything it’s that in the long run, everything can change.

Sometimes I get the blahs. Life looks dull and unappealing. My natural enthusiasm evaporates and I’m left with a gray cast over everything. I’m not sure if the blahs have a specific trigger or if they’re hormonal/cyclical. I’ve seen other aspies talk about being unexpectedly overcome by a general feeling of sadness and not being able to identify the source, which is exactly what I associate with the blahs.

Fortunately, I have an emotional reset button. If I go to sleep feeling down, I’ll usually wake up the next day feeling fine. If I don’t reset overnight, the blahs can stretch into ennui. I’ll get bored and restless, lose my focus, bounce around between tasks accomplishing little or nothing. My routines break down, which only increases my restlessness and lack of focus.

At this point, I need to make a conscious effort to get myself back on track or I risk slipping into depression. A lot of aspies struggle with depression, either as a periodic state or as a clinically comorbid disorder.

My experience with depression has been the less severe, episodic type: a period of feeling down and discouraged, usually in response to something someone has done or said. But I’m mellowing with age, each passing year lessening my need to beat up on myself in response to other people’s slights and judgments. These days I’m more likely to chuck unpleasant interactions into the resignation bin and move on.

That leaves only distress. Is distress really a form of sadness? Some of the synonyms I found for it certainly are: agony, misery, suffering, anguish, torment. I’ve always associated distress more with anxiety or fear, but thinking about it now, I do sometimes feel distress as a form of sadness. I have a fear of abandonment and that fear can trigger a deep-seated, overwhelming distress.

Asperger’s is such a paradoxical condition. I love being alone but I fear abandonment. I don’t often experience unmitigated grief but when I do, it’s overwhelming. I need a thesaurus to help me identify the shape of my feelings, but once I put names to them, they come alive for me in very specific ways.

If you look at my constellation, you’ll see that I added regret and melancholy but after some reflection I put an X next to them. I don’t spend a lot of time looking backward, especially not in a sad way. I’m more of a “learn from it and move on” kind of person. The present moment is more alive for me than any ghost of a memory.

Since learning more about Asperger’s I’ve come to wonder if my muted sadness is a self-protection mechanism. When I wrote about happiness and anger, I talked about the unfiltered versions of these emotions that I experience–the emotions that feel particularly autistic in nature.

I’m far less equipped to handle unfiltered sadness. When it comes, it’s crushing. I think my subconscious instinct is to mute the intensity. There is, after all, only so much sadness a person can handle. So I experience sadness in my own way, inwardly, quietly.

The Purpose of Sadness

I read recently that the “evolutionary purpose” of sadness might be to trigger reflection after a major life event. When we experience loss or a setback, it makes sense for us to withdraw and reevaluate our lives. The result is often a life-changing insight or decision.

If this is the case, my sadness serves me well. I turn inward, often and intensely, searching for answers, insight, a truer path. Even at that funeral in high school, in the absence of grief, I was looking inward. Sad, perhaps, in a very similar way to the rest of the girls, though I didn’t understand it then.

As an adult, I know that the teenaged girls in that church were mourning more than the loss of a classmate. They were mourning the loss of their own innocence. They were confronting the cruelty of life. They were facing the dangers that adulthood holds, the possibility that it could have been any one of us rocketing down the highway one moment, dead at the bottom of a cliff the next.

They were sad for Karen, sad for themselves, frightened, overwhelmed. When I look at it in that context, I see that my feelings weren’t that different from theirs. I struggled with the expression of my sadness–I still do–but it’s been there all along.

Emotions, Health

Anatomy of a Meltdown

December 13, 2012 musingsofanaspie 142 Comments

Last weekend, I had a meltdown and the next morning I tried to capture some scattered impressions of it to share. I’ve purposely left this raw and unedited, the way it unspooled in my head, to give you a feel for how chaotic a meltdown can be. While meltdowns are different for everyone, this is how I experience them.

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A meltdown can go one of two ways: explosion | implosion.

Explosion

Everything flies outward. Words. Fists. Objects.

Implosion

Have you ever seen a building implode? The charges go off somewhere deep inside and for a moment you swear nothing is going to happen and then seconds later–rubble and dust and a big gaping hole in the ground.

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It feels like a rubber band pulled to the snapping point.

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What I don’t want to hear:

It’s okay.: (It’s not.)
You need to pull yourself together.: (I will, when I’m ready.)
Everything will be fine.: (I know.)

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I’m not looking at you because I don’t want to see you seeing me this way.

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It feels like the end of the world. It feels like nothing will ever be right again.

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What I need:

Space
Time
Absence of judgment

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The headbanging impulse is intermittent but strong. I stave it off as best I can because:
a) my brain is not an infinitely renewable resource
b) headbanging scares other people

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Meltdowns are necessary. Cleansing. An emotional purge. A neurological reboot.

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Please don’t ask me if I want to talk about it, because:
a) there’s nothing to talk about
b) I don’t have the resources necessary for talking

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Evolution of meltdowns over a lifetime:

For my first 12 years, I internalize well. So well that I end up in doctor’s offices and emergency rooms with mysterious headaches, high fevers, stiff necks and stomach bugs. At various times I’m told that I don’t have meningitis, migraines, appendicitis. What I do have . . . that’s never conclusively decided. Things come and go, seemingly without rhyme or reason.

Puberty hits. Hormone surges make internalizing impossible. I slam doors, sob uncontrollably at the slightest provocation, storm out of the house, crank up my stereo. My anger becomes explosive. I pinball between implosions and explosions.

Early twenties, into my thirties, the explosions become rare but the implosions grow worse. I can’t get through an emotionally charged conversation with my husband–let alone a fight–without imploding. The headbanging impulse appears. Muteness takes center stage.

My forties–I can count the explosions on one hand. The implosions are down to a couple a year at most. As the meltdowns have lessened, the shutdowns have increased. This is lateral movement, not progress.

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It feels like my whole body is thrumming, humming, singing, quivering. A rail just before the train arrives. A plucked string. A live wire throwing off electricity, charging the night air.

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I’m 90% successful at staving off headbanging. The thing is: when that impulse arises, headbanging feels good. It’s . . . fulfilling?

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Will comforting me help?: No.
Do I want the meltdown to be over?: Yes, but not prematurely.
Would I like a hug?: No.
Am I in danger?: No. I’m conscious of the boundary between stimming and serious self-harm.
Do I want company?: If you’re okay with sitting silently beside me.
Can you do anything to make me feel better?: Probably not. But you can avoid doing the things that will make it worse.

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Muteness: Complex speech feels impossible. There is an intense pressure in my head, suppressing the initiation of speech, suppressing the formation of language.

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My meltdowns aren’t so much about triggers as thresholds. There is a tipping point. A mental red zone. Once I cross into that zone, there’s no going back.

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It feels like dropping a watermelon on the pavement on a hot summer day. The bobble, the slip, the momentary suspension of time just before the hard rind ruptures and spills its fruit, sad and messy, suddenly unpalatable. And no one knows whether to clean it up or just walk around it.

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A shutdown is a meltdown that never reached threshold level. Either my threshold is rising or I’m becoming less sensitive to the precursors as I age.

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Meltdowns are embarrassing. A total loss of control. Humiliating. They make me feel like a child. They are raw, unfiltered exposure.

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Panic. Helplessness. Fear.

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Imagine running as far as you can, as fast as you can. When you stop, that feeling–the utter relief, the exhaustion, the desperate need for air, the way you gulp it in, your whole body focused on expanding and contracting your lungs–that’s what crying feels like during a meltdown.

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Please don’t touch me. Don’t try to pick me up, move me, or get me to change position. Whatever position I’ve ended up in is one that’s making me feel safe. If it makes you uncomfortable to see me curled up in a ball on the floor, you should move–remove yourself from the situation.

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There is emotion at the starting line, but a meltdown is a physical phenomenon: The racing heart. The shivering. The uncontrollable sobs. The urge to curl up and disappear. The headbanging. The need to hide. The craving for deep pressure. The feeling of paralysis in my tongue and throat. The cold sweat.

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The physical cascade needs to run its course. Interrupt and it’ll just start all over again a few minutes later. Patience, patience.

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What I need when I’m winding down:

deep pressure
quiet
understanding
to pretend it never happened

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The recovery period is unstable.

Exhaustion comes first. Mixed with anger, at myself mostly, for losing control.

My filters don’t come back online right away. Unless you can handle an unfiltered aspie, proceed with caution.

Finally, there is euphoria. A wide open feeling of lightness, of soaring, of calm.

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Emotions

The Angry Aspie Explains It All

October 24, 2012 musingsofanaspie 50 Comments

The emotion I see most routinely associated with autism is anger. Again and again–on Facebook, discussion forums, blogs–I see pleas from parents for suggestions about handling anger outbursts in their autistic children. Adult ASD forums are an outlet for more direct expressions of anger–at friends, acquaintances, family, classmates, colleagues, strangers and the world in general.

We autistics are apparently an angry bunch. And it’s no wonder. As children, the world comes at us with an intensity that is confusing, frustrating and, yes, aggravating. Add to that years of miscommunication, bullying, rejection and being misunderstood and it’s not surprising to see the “angry autistic” has become a deeply entrenched stereotype.

Yet when I sat down to make my anger constellation, I only got as far as rage and frustration before I was stumped. While anger has been a familiar companion over the years, it’s one that I’ve relegated to the shadows.

I created my happiness constellation unprompted, a nice little sketch on a small, clean notebook page. My anger constellation required a thesaurus and a good hour of hard thought to produce this:

I’m including that page of notes here not because I expect anyone to read it but because it’s a good visual representation of how I experience anger–a chaotic, fractured and sometimes incoherent mess. I’ve spent days avoiding writing this next part, the part where I have to untangle the mess.

Anger makes me uncomfortable. I avoid it. I suppress it. The last thing I want to do is talk about it. Expressing anger feels wrong. Bad.

So first, a reminder:

And a word about the words I’ve chosen. They feel arbitrary. I’ve done the best I can to put names to the different ways anger manifests for me but even after much thought I’m still not sure they’re the most appropriate choices.

Frustration first, since it’s the first word that came to mind and one of the easiest to describe. Frustration is unmet expectations. It’s waking up to an ice storm on a day I’d planned to run. It’s spending far too long struggling to open a package of cookies and then tearing the package down the middle. It’s not remembering how to switch from the DVD player to cable and getting 500 channels of static. Frustration makes me grit my teeth and growl when what I should be doing is identifying my needs and articulating or acting on them. Serial frustration sometimes leads to a shutdown or a meltdown.

Annoyance. I’ve written and deleted more descriptions of this one than I can count. Which in itself is annoying. Annoyance is a disruption of my process or state of mind. I can’t find the right word to finish a sentence and lose the flow of what I’m writing. The people in the hotel room next to mine are watching TV when I’m trying to fall asleep.

Annoyance is the fly buzzing around my head; frustration is taking twenty whacks at it and missing every time.

Thanks to Asperger’s, I have more than a passing familiarity with irritability, which has roots in sensory overload. I’m overtired. I’m hungry. I’m hot. My shirt is scratchy. I’ve ignored my sensory limits one too many times and it’s turning me into a cranky toddler. Danger, danger, shutdown is imminent.

And thanks to being a mom, I’ve discovered wrath, which is what I’m calling that mama lion feeling that comes charging out its hiding place when someone messes with my kid. Bad idea. Enough said.

For some inexplicable reason, right after wrath, I added fuming to my notes. There’s little relation between the two–wrath is primitive and instinctive. This other thing–the one that makes me seethe with anger and vow to right some perceived bureaucratic wrong like I’ve just been granted membership in the Justice League–is purely intellectual. It doesn’t happen a whole lot, but when it does, I’m a force to be reckoned with. Pass me my cape and stand back.

The Big Three

All of that so far? I’m fine with it. It’s the kind of anger that comes and goes. What follows, the big three of indignation, alienation and rage, those are more firmly entrenched.

Let’s start with the one that’s been with me the longest: indignation. Indignation arises from humiliation, shame, fear of not being good enough, from feeling invisible, stupid or ignored. It’s the way my vision blurs when someone treats me like I’m an idiot for asking the same question too many times. It’s the hot blush I can’t control when I say something that falls on deaf ears. It’s the blood pounding in my ears when someone lectures me like I’m a child.

Indignation is wanting to scream I get it, I know, I understand, I’m here, I have something to say, slow down, I can do this, stop trying to fix-help-correct-educate me. It’s been with me for as long as I can remember. It festers in the broad gap between intellectual ability and social skill.

Alienation arrived later, sometime in early adulthood, but it sits stubbornly beside indignation with no plans to leave any time soon. It may be odd to describe alienation as an expression of anger, but as my husband put it, “you’ll shut someone out for 5 years instead of yelling at them for 5 minutes.” That’s an exaggeration, but not by much.

My capacity for resentment is deep and wide. I lack confrontation skills. Never learned them as a child, didn’t see much use for them as I moved into adulthood. It’s easier to stay mad. In my twenties and thirties, my anger fueled my actions and propelled me through a lot of pain. It’s probably responsible for a good deal of my success. But clinging to that anger also cut me off from people in deep, possibly irreparable ways. Because that was easier, too. Still is. I’m working on it.

Because I avoid dealing with the feelings that swirl around indignation and alienation, they revisit me at night in the form of dreams–nightmares really–filled with rage. When I first started having these dreams about ten years ago, the intensity of them was startling. I would wake up thinking, who is that crazy woman? For a while, I thought there was something seriously wrong with me. I was turning into a freakish mutant–mild-mannered woman by day, raging she-Hulk at night.

Recently I’ve discovered a pattern to the anger and violence of my nightmares. Understanding why they happen doesn’t make them any less disturbing, but it’s helped me formulate a strategy for reducing their frequency. Which is (and will be) a post in itself.

The Anger that Goes Straight to My Hands

Finally, another of those feelings that doesn’t have a name. In the same way that I experience pure undistilled happiness, I also experience a very pure form of anger. It starts in my brain and terminates in my hands. It’s reflexive. White hot. Short-lived. Irrational. More chemical or electrical than emotional.

It’s like this: my husband bumps into me in the kitchen and I impulsively, irrationally get the urge to punch him. And here’s the weird thing: I’m not mad at him. I’m not mad at all. I’m experiencing the emotional equivalent of touching my hand to a hot stove. Trigger→physical impulse to react. There’s no cognitive processing involved. I’m not thinking. I’m reacting.

This feeling is almost always triggered by a physical experience and only happens when I’m hovering near my limit for sensory stimulation. I’ve learned to control the physical impulse. The trigger hits, I feel a spike of intense negative energy surge from head down my spine, and I still my hands until it passes.

That last part is key. If I didn’t hold on tight and ride out the physical impulse, I would lash out with hands at whatever was nearby, punching, throwing or breaking something to dissipate the energy in my hands.

When I read stories about children lashing out violently, I wonder if this is what they’re feeling. Maybe it’s not anger in a traditional sense but the need to release a sudden incomprehensible surge of energy.

A Universal Reaction

Most often my reaction to any form of anger is that I want it to stop. I didn’t learn how to express anger constructively as a kid, only that it was undesirable.

While I was doing some research about anger and autism I can across an interesting study (Rieffe et al (2007) ): in a group of ten-year-olds who were surveyed, all of the neurotypical kids reported experiencing anger, but only 77% of the autistic kids said that they ever experienced anger. (All of the kids in both groups reported feeling happiness so we can rule out the myth that autistic kids simply don’t feel emotions as an explanation.)

I wonder if some of the autistic kids in that study were like me at that age–afraid to admit to an emotion that they’d been taught was bad. Because at ten years old, if an adult asked me if I ever got angry, I probably would have said no. I didn’t want to be seen as a bad kid and I thought only bad kids got mad at stuff.

My literal aspie brain didn’t perceive the difference between “expressing anger in destructive ways is bad” and “expressing anger is bad.” What I really needed was for someone to specifically say, “when you’re mad, here are some things you can do about it.”

Anger as a Protective Mechanism

Anger is an expression of a violation of my person. If I deprive myself of the right to express that, then I’m depriving myself of the right to have boundaries and to keep myself safe.

As I read back over that last sentence, I was struck with one of those big “aha” moments that sometimes happen while I’m writing. As I’ve grown older, I’ve gotten better at defining boundaries and structuring my life in a way that supports those boundaries.

So much of my anger as a teen and young adult was related to feeling vulnerable and inadequate. As those feelings have dissipated I’ve released a lot of the deeply entrenched anger that built up during those years. I’m arriving at a place of acceptance. I’m slowly dusting off the layers of my adult self, like an archaeologist at an ancient dig site, careful not to damage what I’m uncovering.

As each new layer reveals some fascinating little detail, I scramble to integrate it into my understanding of myself and marvel at the fact that this much self discovery is possible at my age.

Emotions

Happiness, Aspie Style

October 3, 2012 musingsofanaspie 24 Comments

“Are you happy?”

My gut reaction to this question is usually, “I dunno. I guess so.”

Before you assume that I don’t know if I’m happy because, duh, I’m an aspie, let me explain.

Happy is one of the blandest words in the English language. Think about it. Are you happy? Did you reflexively say yes? Did you have to stop and consider your answer?

Okay, how about this: Are you elated?

I bet you didn’t have to think very hard about that. The word elated is as precise and loaded with meaning as happy is vague and amorphous.

Putting emotions into words is tough for aspies. Maybe a big part of the problem isn’t our Aspergarian nature so much as the words we settle for. Happiness encompases a whole constellation of positive feelings from contentment to ecstasy, but when I think about “happy” all I have is a blurry splotch of a feeling.

Elated, on the other hand, has a very specific shape for me–elated is riding my bike down a hill at top speed, the wind whipping my shirt, the road a blur beneath me, and I can feel a shout building in my chest that makes me want to throw my head back and close my eyes and let out a crazy loud laughing shouting whoop of joy.

Constellation of Happiness

Thinking about all of the different words that make up my constellation of happiness led me to map them out on paper:

Contentment is where I spend the most time. If I had to pick a default state, this would be it. Contentment is curling up on the couch with a good book, holding hands with my husband on our evening walk, watching a hawk circle overhead, the feeling of flannel sheets, seeing the sun rise on a fall morning, digging my toes into the sand at the beach, pulling on my favorite t-shirt.

One level up from contentment is peace. This is the place I most like to be. When I’m in a peaceful place, I feel a deep sense of quiet in my mind and body. Everything about the world feels right–in sync, wide open, infinite. That peacefulness almost always fills me when I’m outdoors–hiking, running, swimming, walking the dog–away from people, soaking up sunshine, covering distance, moving.

Beyond that feeling of peace is mushin (empty mind). This is the place where conscious thought doesn’t exist and everything simply is. You either get this or you don’t and no amount of explaining will change that. I hope you get it. To realize that you’ve been in a place of no thought is a stunning, rare, ephemeral kind of happiness.

Cheerfulness. I barely finished writing the word before I crossed it out. Not because I lack the ability to be bright and cheerful but because I so often seem to be cheerful at the wrong time, which sometimes provokes negative reactions, especially from strangers. People get a little freaked out when you’re overly happy for no apparent reason.

Going completely against the stereotype of the humorless aspie, I’ve put amusement in my constellation because I love humor. Yes, I sometimes miss a joke and my sense of humor can be odd, but I love sitcoms, stand-up, cartoons, sarcasm, puns, wordplay, and satire. I laugh often and loudly. In fact, now that I think about it, I like how laughing feels. There’s a ticklish sort of release to laughter that you can’t get any other way.

There road to bliss runs through desserts made of chocolate, good sex or a long run on a beautiful day. Bliss defies capture. It’s boneless, languid, unbound.

Wonder is a silent feeling, a sense of being awestruck. It’s always unexpected and strong. Pure, childlike, fleeting. It’s seeing the sun hitting an ice-coated world after a winter ice storm. It’s driving around the bend of a mountain and having the landscape suddenly open onto a lush green caldera. It’s emerging from the woods to discover a herd of elk grazing in a meadow.

I was on the fence between joy and excitement, but I settled on joy. Excitement has an edge of anticipation that pushes it out of the happy constellation and into the constellation of anxiety. But joy is purely positive. Joy is light and sparkly, like an unexpected string of holiday lights on a balcony in July. Joy is my daughter calling to tell me about something great in her life. Joy is the smile on my husband’s face when he sees me coming to meet him on his walk home from the train. Joy goes hand in hand with love for me. It never rises up alone like wonder or peace.

Elation is joy². It’s that whooping, running, rush of feeling I described at the beginning. It’s more physical than joy but less physical than that feeling without a name that I’ve drawn as ? in a circle on my constellation. If elation is joy squared then the unnamable feeling is joy¹⁰⁰⁰.

The unnamable feeling is entirely physical. It makes me want to bounce up and down, skip down the street, twirl in circles. I think this is a uniquely autistic feeling and maybe that’s why I can’t find an appropriate name for it. If it were possible to distill happiness down to it’s purest, most potent form, it would be this unnameable thing that occasionally takes over my body and makes me feel like I’m flying.

Feelings or Feeling?

Reading back over what I’ve written, I’m struck by how much of my emotions I describe in physical terms. I can associate specific physical sensations and events with all of these emotions. For the stronger emotions, the physical sensations can verge on overwhelming. Extremely positive emotions demand to be released through some sort of physical activity, while the calmer positive emotions bring a sense of internal quiet and physical stillness.

I wonder if this is true for neurotypicals. Do feelings literally translate into feeling something physical or is this unique to those of us on the spectrum? When I look up “feeling” in the dictionary, the definition related to emotions tells me that it’s an “overall quality of one’s awareness.” That sounds rather boring.

I’d much rather think of feelings as things that can be physically felt, brilliant as a shiver of cold on a clear winter night.

More Constellations to Come

I’m not sure if this helpful to anyone but it was fun to do. Oh, I forgot to put fun in my constellation! I suppose I forgot a bunch of other feelings, too. I’ve never really given a lot of detailed thought to how my emotions manifest themselves. Just the act of naming them and associating them with events, memories and feelings has been really enlightening.

There are at least two more constellations I’d like to try: sadness and anger. Disgust, fear and surprise supposedly round out the six basic emotions, but they look trickier to diagram. Perhaps after I’ve tackled sadness and anger I’ll be ready for the rest.

A Postscript

I gave this entry to my husband to read and one of his reactions surprised me. He asked if writing something that made me seem this happy would make some readers question whether I’m really an aspie. Perhaps. The stereotype of the emotionless autistic person is a strong one. I hope this piece helps to refute it in some small way.