Tagged: social communication issues

February 14, 2013

Scenes from an Autistic Childhood

Through the magic of old home movies (actually DVD transfers of grainy super 8 footage), I’ve been able to study bits of my childhood, looking for typical early childhood signs of autism.

Hindsight is not only 20/20 it’s very entertaining. I decided to liveblog scenes from my autistic childhood, so you can share in the fun.

Let’s go back in time . . .

DVD #1: The Early Years

Through most of the first disc I look like an average baby and toddler. Maybe a little hard to engage at times. I’m often staring intently at something off camera. I’m interested in objects as much as people. Give me a baby doll and I’ll probably hug her. Or wield her like a club. It’s a toss up.

I’m not the most expressive baby. I more often look panicked or confused or grumpy than happy. Hmmm, when I do look happy it tends to be the shrieking, hand flapping sort of happiness.

Then this happens:

My dad is on the floor in front of me, just outside the cropped frames. At first he’s making noises and I’m laughing. After a few seconds of that, I look up toward the camera, suddenly oblivious to him. Frustrated, my dad puts his hand between me and the camera. Note the unchanged expression on my face before and after. He shakes my shoulder, tickles me, calls me, tries the hand thing a couple more times. Nothing seems to get through to me. I’m still staring at whatever’s caught my attention when the frame goes dark.

Doesn’t respond to his or her name or to the sound of a familiar voice.

Soon I see more clues:

51:55 – I’d rather sit and bounce on my ball than throw or kick it.

53:01 – The first of many shots of me happily swinging on my backyard swing set.

54.35 – I’m intensely interested in hammering nails into a piece of scrap wood. With a real hammer! There’s an entire reel of hammering. Perseveration R Us.

58:38 – A little hand flapping for the goats at the petting zoo.

1:04:14 – Here I am getting a haircut. I loved going to the hairdresser because it meant I got to play with the rollers and hair clips. And by play with, I mean sort by size and color.

Doesn’t play “pretend” games, engage in group games, imitate others, or use toys in creative ways.

DVD #2: Vacation!

Being away from home causes me to stim nearly nonstop. In the first twenty minutes, I’m 3 to 4 years old and still an only child. I wonder if being the first child–with no siblings to compare my behavior to–makes my autistic traits less obvious to my parents.

3:40 – Here I am rocking back and forth in my stroller at Santa’s Land.

5:21 – My parents prompt me to wave to the camera. Again. I rarely wave unless they tell me to.

Uses few or no gestures (e.g., does not wave goodbye)

8:12 – An entire reel of me sitting beside my inflatable pool, washing the grass off my feet. I’m still doing it when the camera shuts off. I seriously did not like having grass stuck to my feet. Or grass in my pool.

9:40 – Happily swinging on a porch swing.

9:52 – Really happily swinging on a chain link fence. Okay, more like happily full body slamming the chain link fence.

Flaps their hands, rocks their body, or spins in circles

10:39 – Staring intently at an animatronic display. So intently that I have my face pressed flat up against the glass.

11:40 – Swinging on a glider. A disproportionate amount of these movies are of me swinging on things.

11:55 – Stimming with Santa! Here’s how my 4-year-old visit with Santa goes: I get on his lap. I sit facing away from him and never once look at him. I fiddle with the candy cane wrapper in my hand, examining it like it’s the most interesting thing I’ve ever seen. Santa says something to me. I pretend he doesn’t exist. I fidget with the wrapper some more. Santa says something and waves at the camera. I enter a state of serene bliss in which nothing exists but the wrapper. Santa waves some more. Santa tries to take away my candy cane wrapper. The screen abruptly goes dark.

Exhibits poor eye contact

12:42 – More rocking, this time while posing in front of a statue of a giant pig.

12:56 – More intense staring at animatronic gnomes.They’re rocking gnomes. I love them. In fact, I love them so much, I’m rocking in time with them.

13:20 – More staring. This time at dwarves.

14:18 – Here I am rubbing Humpty-Dumpty’s egg-shaped body. Over and over again, my parents pose me on or next to something and I immediately start rubbing my thumb or palm over the closest surface.

Engages in repetitive gestures or behaviors like touching objects

15:49 – Swinging from the rope of the school bell in an old fashioned schoolhouse.

16:32 – Bouncing up and down with the White Mountains in the background.

You get the idea. Ten more minutes of vacation footage and I’m constantly in motion. Bouncing, rocking, fidgeting with my windbreaker zipper, kicking my feet, flexing my knees, jiggling my feet, rubbing surfaces, hand flapping.

Moves constantly

I’m thinking it’s time to shut the DVD off, assuming I’ve made my point, when I see my sister do something I haven’t done once in more than 90 minutes of video: she points. She’s about a year old, and she’s pointing at the petting zoo animals. That’s when it hits me. I have one of the classic early childhood autism symptoms–a failure to point at objects.

Doesn’t point, wave goodbye or use other gestures to communicate

Soon we’re at Disney World with a family friend. She and my sister point again and again at things they’re excited about. I don’t point at anything. Not once.

30:06 – I’m about six here and I’ve learned to wave at the camera without being reminded. I’m riding on a carousel and wave at the camera every single time I go by. Yep, I’ve got the waving thing down good.

35:36 - We’re at Gettysburg. I’m around seven years old. My mother and sister are posing by a canon, waving at the camera, chatting away. I’m climbing on the canon, rubbing the canon, pretending to ride on the canon, paying no attention to them or the camera.

Appears disinterested or unaware of other people or what’s going on around them

It’s interesting to see footage of my sister and I at similar ages. I see how much more likely she was to engage with the camera, to wave spontaneously, to be smiling or talking or paying attention to the people around her.

I also see that I took a lot of cues from her. She’s four years younger, but at times–like when we’re interacting with characters at Disney World–I’m obviously watching her and following her lead.

And now that I’m no longer the sole focus of the camera’s attention, I’m a lot more likely to just wander out of the frame.

DVD #3: A Slew of Holidays with a Dash of Empathy on the Side

12:10 – Back in time again, to my 2nd birthday party. It’s a huge one. Every cousin, aunt, uncle and grandparent wedged into our basement rec room. I’m looking a little overwhelmed, circling a pole in the background as my cousins mug for the camera. When it’s time to blow out the candles I bravely poke a finger into the icing, lick it off my finger and immediately grab a napkin to clean my hand. Some things never change.

17:51 – Halloween. I’m six years old and for the first time I see evidence of my inability to tell if anyone is paying attention when I’m talking. As I scoop the seeds out of my pumpkin I’m rambling on about something to my sister who is too young to understand and my mother who is bustling around the kitchen, not even in the frame half the time. I’m blissfully undeterred.

Tends to carry on monologues on a favorite subject

20:12 – A bunch of Halloweens flash by. I’m Raggedy Ann. I’m a nurse. I’m a cat. Every costume has a stiff plastic mask which I pull off repeatedly. After yanking off the cat mask, I tug at my hair with both hands. Even today, my single most vivid memory of Halloween is the warm wet sensation of plastic against my face as my breath condensed on the inside of those masks.

29:50 – It’s snowed! My eighteen-month-old self is skeptical. I touch the snow with one mitten. Look at my hand. Immediately begin flapping. Cut to a shot of me a few months later, enjoying a fine spring day by toe-walking up the driveway. Yet another thing I’d say I never did if I hadn’t seen it here.

32:50 – I’m sitting on the couch with a doll. My parents have mounted a light on the camera to improve their movies. I peek toward the camera, grimace in shock (or pain?) and close my eyes. I not only don’t look at the camera again, I turn my doll’s head away too. Empathy! Does it still count if it’s for an inanimate object?

May be unusually sensitive to light, sound and/or touch

40:19 – My sister and I are playing with my dolls in my room. By playing I mean I’m lining them up against the wall by height while preventing her from touching them. She enjoys this about as much as you’d expect a toddler to.

Obsessively lines up or arranges things in a certain order.

Looking back at these old films through the lens of autism is really enlightening. I had telltale signs of Asperger’s syndrome at a time when AS didn’t exist. I don’t remember much of what I’ve related here, but I do remember being a generally happy kid in my preschool years. Because I didn’t attend nursery school or daycare, I guess spent my first five years in a bit of a bubble, happily stimming my way through Santa’s Land.

Was I a happy kid or what?

Signs of Autism in Early Childhood

While I’ve highlighted many of the early signs of autism in my observations of my younger self, each child is different. You can find comprehensive lists of early signs and symptoms at Mayo Clinic: Autism Symptoms and/or the CDC’s ASD Signs and Symptoms.

January 17, 2013

The Empathy Conundrum

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.”

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.

——-

*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

January 15, 2013

The Broad Autism Phenotype Questionnaire

This week for Take-a-Test Tuesday, I took the Broad Autism Phenotype Questionnaire.The only online version I was able to locate is seriously flawed so I’m going to recommend against taking it. However, I’ve been looking for an excuse to talk about the Broad Autism Phenotype and here it is! If you’re the parent of an autistic child, I have a question for you about the BAP at the end.

The Broad Autism Phenotype (BAP) is a fancy way of saying that nonautistic relatives of autistic individuals often have subclinical autistic traits themselves. As far back as Leo Kanner’s original study on autism, researchers have been observing a tendency for parents of autistic children to exhibit traits that are milder but qualitatively similar to the defining characteristics of autism, especially in the area of social communication.

Consequently, the Broad Autism Phenotype Questionnaire (BAPQ) focuses primarily on social communication, rigid personality traits and pragmatic language deﬁcits, which are thought to be the most common characteristics of BAP. It is designed to be taken by nonautistic individuals, specifically parents of autistic children.

The BAPQ has questions in three areas:

social communication deﬁcits (aloof personality subscale)
stereotyped-repetitive behaviors (rigid personality subscale)
social language deﬁcits (pragmatic language subscale)

Each of these areas corresponds to one of the core domains of autism (though that will change with the DSM-V): social, stereotyped-repetitive, and communication deﬁcits. The researchers who developed the BAPQ defined the three subscales that the test measures as follows:

Aloof personality: a lack of interest in or enjoyment of social interaction
Rigid personality: little interest in change or difficulty adjusting to change
Pragmatic language problems: deﬁcits in the social aspects of language, resulting in
difficulties communicating effectively or in holding a ﬂuid, reciprocal conversation

In developing the BAPQ, traits like anxious/worrying,hypersensitive to criticism, and untactful (which can all be autistic traits) were omitted because the researchers believed they were observed less frequently as part of the BAP. An individual is considered to “have” BAP if they exceed the threshold score on two of the three subscales.

It’s interesting to note that parents, grandparents, aunts and uncles of autistic children also have higher than average rates of major depression and social phobia. A number of studies (like this one) have indicated no direct relationship between BAP and major depression or social phobia in autism families. There have also been a number of studies that have refuted the notion that raising an autistic child is the cause of these elevated rates (take a look at the discussion section of the linked to study if you’re curious about how they reached this conclusion and what other factors might be at work).

Taking the Test

The only place I could find to take this online is at OKCupid. The test is riddled with grammatical errors and the result summaries are downright insulting. The scoring also appears flawed, so unless you have literally nothing better to do, I don’t recommend taking it. Seriously, go see what’s new on Tumblr or something.

My primary purpose in analyzing the online test is to point out how flawed it is and how it doesn’t align with the intended scoring method of the original BAPQ. You might want to go through the test to see what questions are included but you can also find the questions on page 10-11 of this PDF.

Scoring the Test

It’s unclear how the online test is scored. The original BAPQ has 6 answer choices, scored on a scale from 1-6, but the online test collapses the first and last two choices. The BAPQ cutoff scores are averages (2.75 – 3.5), which were developed as part of a study using the 1 to 6 scale. The OK Cupid test appears to be using a summed score rather than an averaged score to determine a cutoff, so maybe the person who posted this decided to make up their own cutoff?

Like I said, you’d be better off wasting fifteen minutes on Tumblr.

At any rate, it provides four scores: diagnosis (overall score), aloof (aloof personality traits), rigid (rigid personality traits) and pragmatic (pragmatic language problems). The fact that the scores are presented as percentages (in excess of 100, no less!) makes no sense. Even worse is the little “diagnostic” description provided.

Mine says: “You scored 123 aloof, 117 rigid and 100 pragmatic. You scored above the cutoff on all three scales. Clearly, you are either autistic or on the broader autistic phenotype. You probably are not very social, and when you do interact with others, you come off as strange or rude without meaning to. You probably also like things to be familiar and predictable and don’t like changes, especially unexpected ones.”

Yep, that’s me, 123% aloof and 117% rigid.

I looked at all of the possible outcome descriptions (you can force the test to reveal them at the end even if they don’t pertain to your score) and they’re all just as meaningless. Some are downright wrong. Many of them state that you’re on the BAP if you are over the cutoff on one subscale but not the other two, which is incorrect.

Basically, the “results” of the online test are useless.

If you’re interested in taking the BAP and getting a valid score, you can look at the appendix of the original research paper which has the full set of questions with a scoring key.

The Bottom Line

The online version of the test is too flawed to provide meaningful results. The BAPQ as administered in a clinical setting is used to screen for BAP in parents of autistic children, but the goal of screening is unclear.

My question for any parents of autistic children who might want to answer: do you see aspects of yourself in the BAP questions? Do you think the BAP has any significance for you personally?

December 16, 2012

Sadness

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.

November 14, 2012

The Athletic Aspie. No, really.

Aspies are notoriously unathletic. We tend to be clumsy and uncoordinated. Chalk it up to a motor planning deficit, poor executive function, proprioception difficulties, dyspraxia, or all of the above. Whatever the cause, the result is that we’re more likely to be branded a geek than a jock.

Unfortunately, I never got the memo on this. All my life I’ve loved sports and being physically active. Loving sports, in my case, isn’t the same as being good at sports, but I’ve never let that stop me.

Though my parents didn’t know I had Asperger’s they did know that I was clumsy. One of their nicknames for me was “Grace”–as in, “careful there, Grace” and “that’s our daughter, Grace.” I think this is funnier when you’re the one saying it than when you’re the one tripping over an inanimate object.

Perhaps in an effort to help me overcome my lack of coordination, they signed me up for a lot of individual sports: dance, gymnastics, bowling, golf, diving, swimming, karate.

Most of these were activities that I could do with other kids but didn’t require the type of interaction that team sports do. I was on a bowling “team.” All that meant was that I took turns with four other kids. The bowling itself was an individual pursuit. Other kids took a turn. I took a turn. I got to add up the scores. I wandered off to watch one of the arcade games. Someone called me back when it was my turn. It was great.

Golf and dance and karate were the same. I did these things alongside other kids but not really with them. There was an appearance of social interaction. The actual amount of interacting I did was minimal and that was fine.

I’ve always loved individual sports for exactly this reason. I learned to swim soon after I learned to walk. My family had a swimming pool in the backyard so I was in the water months after being born and enrolled in swim lessons as soon as the YMCA would take me. Swimming is still one of my favorite ways to relax. I love being in the water–the sensation of weightlessness, of gliding, of floating, of being surrounded and suspended–and I love the rhythmic movement and sensory deprivation of a long swim.

My YMCA Minnow patch – one of the few things I’ve saved from childhood.

As an adult I took up running. Like swimming, I enjoy the rhythm of running. I also like the way it gets me out into the quieter places–trails through the woods, quiet paths along the river, a beaten single track frequented more by deer than humans. I loved long bike rides as a kid for the same reasons.

The Beauty of Individual Sports

I tried team sports. In middle school, I was on the school softball and basketball teams. It was fun but I wasn’t very good at it and spent most of my time sitting on the bench during games. I also got razzed a lot by coaches for not making enough effort. My basketball coach was always yelling at me to be “more aggressive” but I had no idea what she meant.

There was a lot about basketball that I didn’t quite get. Team sports have many variables–the rules, the other team members, the fast pace, the ball (inevitably there’s a ball involved). For the typical aspie, this is a lot to manage. By the time I got to high school, I knew that team sports weren’t for me.

But individual sports! This where aspies can shine. When I’m out on the trails or in the pool, I feel strong and athletic. I feel like I’m coordinated and connected to my body. I feel like I’m good at a sport! Forgive my exclamation points, but this is exciting for someone who grew up feeling clumsy.

So, let me sell you on the wonders of individual sports for aspies of all ages:

1. You can progress at your own pace. Individual sports allow you to measure your progress against yourself. While you might compete against others, most individual sports also encourage “personal bests.” Running a new best time for a mile or swimming a personal best for a 400 is as fulfilling as beating an opponent. Maybe more so, because it’s an indication that your practice is paying off and you’re better at your sport than you were a month ago or a year ago.

2. You can be part of a team without the pressures of a team sport. Individual sports can be less stressful than team sports when it comes to having to perform well every time. If you have a bad day as a team player, your actions can impact the whole team. If you have a bad day as a cross country runner, you might not place well, but one of your fellow runners could still win the race. There are team consequences, but they tend to be less severe.

3. You can practice by yourself. This is a huge advantage for aspies. Because of our motor coordination issues, we might need a lot more practice than the average person to learn or master a skill. When that skill is something that doesn’t require a team or a partner to practice, we can spend hours working on it alone, at our own pace.

4. You play side-by-side with others. Team sports put a big emphasis on bonding with other team members, which can be stressful for aspies. Individual sports allow you to play alongside others, interacting as much or as little as you feel comfortable.

5. Individual sports tend to be rhythmic, repetitive and predictable. And what do aspies like more than rhythmic, repetitive, predictable movement? Running, cycling and swimming are like large-scale, socially acceptable stims. And you can do them for as long as you like. The more, the better!

6. Individual sports can burn off a lot of excess energy. Many individual sports are endurance based, making them an ideal way to tire out a high-energy aspie. Even moderately vigorous physical activity will burn off excess energy and trigger the release of endorphins, which not only improve your mood but can reduce anxiety and help you sleep better.

7. Individual sports improve coordination. All sports improve coordination, but individual sports tend to be more “whole body” sports, requiring you to integrate all of the parts of your body to achieve the best possible result. Think of the type of movement required for swimming breaststroke versus the type of movement required for playing shortstop.

Why Exercise is an Essential Part of Managing My Asperger’s

I need to get in at least an hour of running, swimming or walking every day. I need to exercise every morning. When I say need, I’m not kidding. If I didn’t exercise religiously, I would likely be on medication for both anxiety and depression.

Hard physical activity burns up the unwanted chemicals in my body and generates a nice steady flow of good chemicals. Exercise takes the edge off my aspie tendencies and leaves me feeling pleasantly mellow. If my physical activity level falls for a few days in a row, I start feeling miserable. I get short-tempered, cranky and depressed. I lose my emotional balance. I don’t sleep as well. I find it harder to focus.

Being physically active also keeps me connected to my body. I have a tendency to retreat into myself and become disconnected from everything that isn’t inside my head. I’m also still–in spite of decades of sports practice–more clumsy and uncoordinated than the average adult. Being physically active helps me combat this and makes me more physically resilient when I do take an expected tumble.

A Little Different Spin on Physical Activity

One of my favorite bloggers, Annabelle Listic, has written a wonderful post–Kinect with Me!–about how she is using the physical activity of gaming to address some of her concerns (which are different from mine). I’ve never played a video game that requires physical interaction but her post got me thinking that this type of gaming might have many of the same benefits as participating in an individual sport.

October 6, 2012

How Asperger’s Taught Me to Hate the Phone

What is it about Asperger’s that makes talking on the phone so anxiety-inducing?

When someone says “I’ll call you” my first reaction is what can I do to make that not happen? This is especially true of social calls, the kind that many women think are a pleasant way to connect with a friend. Business calls are slightly less stressful because they have a goal and I can formulate a script ahead of time that will get me to that goal. Assuming the call goes mostly to script and is short, I can power through it.

But why should something as simple as phone call require “powering through” like it’s the social equivalent of an Ironman triathlon?

Hello?

The phone should be an ideal means of communication for someone who isn’t good at reading body language or making eye contact. All you get over the phone is a voice, right? Communication distilled to its essence: words.

It turns out this isn’t exactly true. Unlike written communication, which is truly nonverbal, phone conversation relies heavily on prosody (the rhythm, stress or intonation of speech). Prosody often conveys the emotional content of language or signals the presence of irony, sarcasm, emphasis or contrast.

Suddenly this one aspect of speech looks pretty important, doesn’t it?

If you can’t interpret prosody, you don’t get certain types of humor, you miss the subtle emotional shifts in the conversation, you fail to recognize which details are being emphasized. That’s just on the listening end. If your own speaking voice lacks prosody–a common trait with Asperger’s–your conversation partner will probably feel ill at ease too.

This explains a lot about why my phone conversations are often punctuated by:

“No, you go ahead.”

and . . .

“What were you going to say?”

and the much loved:

“Are you still there?”

I have a tendency to pause for too long before my turn to speak, which makes the other person anxious. He or she will start speaking again, often right as I start to reply to the previous comment or question. This results in a lot of false starts, interruptions and awkward, “no you go first” encouragement.

The Delicate Balance Between Knowing My Limits and Limiting Myself

If I know that these ill-timed pauses are the problem, why don’t I do something about it?

Good question.

Sometimes I miss the little cues, like a change in intonation, that indicate the other person has finished their turn and it’s my turn to talk. Sometimes I’m using that long pause to collect my thoughts or compose a reply. If the conversation is particularly unstructured, I may start to drift off and lose track of it altogether. Unexpected questions can leave me tongue-tied. In the worst case, I might have no idea what the other person said–at times words sound more like noise than language.

When I first saw the question “do you dislike talking on the phone” on an Asperger’s Syndrome screening questionnaire, I was mystified (and more than a little relieved). Did Asperger’s cause people to dislike the phone? What a strange and specific condition this is, I thought to myself.

After much reading and thought, I’ve realized that Asperger’s itself doesn’t make me dislike the phone. Plenty of people with AS don’t mind the phone at all. What makes me uncomfortable (with all but a few people who I know well) is the cumulative effect of a lifetime of stumbling encounters.

I’m realizing that much of the anxiety I have surrounding social communication has formed in this way. I struggle with processing some aspect of communicating, the negative experiences pile up, and in time I find myself avoiding situations to avoid what I’m certain will be more negative experiences.

Intellectually, I know that I’m creating negative feedback loops, but emotionally I find myself on the defensive, wanting to protect the comfortable bubble I’ve created. I teeter back and forth between seeing the importance in knowing my limits and questioning whether those limits are too . . . limiting.

At some point, I know I’ll have to face this conundrum in a more organized way but I also know that I’m still learning what my limits are and how they protect me and that’s enough for now.

September 26, 2012

Eye Contact: The Conversation within the Conversation

Making eye contact–or more precisely, not making eye contact–is a big issue for people with Asperger’s. Neurotypical people seem to be especially frustrated and confused by this aspect of aspie behavior.

Even the professionals, who can offer up all sorts of theories as to why we don’t make eye contact, don’t seem to get the fundamental issue. In one study, the author pointed out that people with AS don’t make use of expressive information in the facial region of the eyes, “even when it’s available.”

That last part made me laugh. That’s like giving a Russian/Japanese dictionary to a person that can’t read either language and asking them why they aren’t using it. Just like that dictionary, the part of the facial expression around the eyes is a foreign language to an aspie.

Reading Expressions: The Eyes Test

I’m moderately good at reading facial expressions. I get the biggies like happiness, sadness, surprise, anger, and confusion. More subtle expressions–those that rely most heavily on the use of the eyes and the area around the eyes–are much harder for me. For example, on this list of 30 facial expressions, I would not have correctly identified the ashamed, concerned and contempt faces.

It’s important to note that “reading the mind in the eyes” (as the professionals call it) involves more than just the eyeballs themselves. It requires understanding how the subtle changes in the muscles around the eyes convey emotion. This becomes more obvious when you take the creatively named “Eyes Test” which requires you to use just the portion of the face between the nose and forehead. If you’re curious, you can find and take the test here:

Instructions (scroll all the way to the bottom of this file for the record sheet and scoring key)
Eyes Test Part 1
Eyes Test Part 2

(You can also find an interactive version called Reading the Mind in the Eyes at Test My Brain but you need to enter some demographic information to take it.)

I did surprisingly well on the test and here’s why: I cheated.

I suspect that most NTs taking this test would look at an expression and spontaneously have an idea of what the expression was. This is probably why the instructions say to choose an answer as quickly as possible.

How did I cheat? Before even looking at the expressions, I found myself reading all four possible answers. Then I looked at the expression and began the process of elimination. Here’s one of the expressions from the test with the four possible answers:

A sample question from the Eyes Test

My process of elimination: I know right away that it’s not dominant or horrified. It looks more like friendly than guilty, so the answer is friendly. If I hadn’t been given four choices for each expression, there is no way I would have spontaneously provided some of the more subtle answers like insisting or uneasy.

Obviously, in a real-time social interaction, no one is going to have four possible emotional options floating around their head to help me guess at what they’re feeling. Like most aspies, I’ve learned to use other information to try to fill in the blanks when it comes to facial expressions. I often focus on a person’s mouth, which I find conveys emotions more explicitly to me than the eyes.

I can gather some additional data from a person’s voice, especially when I know the person well. When my daughter calls me, I can tell from the way she says “hi” what kind of mood she’s in and what the conversation will likely be about. Unfortunately this only works with people I know well.

Over time I build up a databank of voice qualities for a person. With enough conversations in the databank, I need only a few words to recognize the happy voice, the lying voice or the you’re-not-gonna-like-this voice.

Why Learning to Read the Eyes is Challenging for Aspies

If we can learn all of these work-arounds and hacks for reading emotion in others, why can’t adult aspies just learn to read the eyes?

There are programs to teach children how to do interpret facial expressions. But for adult aspies, it’s a bit more complicated. We’ve grown up and spent decades of our lives not making eye contact.

Are we unable to read the eyes because we don’t make eye contact and therefore don’t have a rich enough data bank to draw on?

Or . . .

Do we not make eye contact because we discovered early on that the eye region doesn’t hold any useful data for us and our limited data gathering abilities are better “spent” on areas like (in my case) the mouth or voice?

It sounds like a classic “chicken and egg” scenario, doesn’t it?

Add to that level of discomfort that many aspies feel when it comes to making eye contact and it’s easy to see why learning to use and read the eyes in social interaction can feel like such an overwhelming prospect.

Is Making Eye Contact Multi-Tasking?

More than once I’ve read the suggestion that autistic people don’t make eye contact because we have trouble doing two things at the same time. This strikes me as ridiculous. Is making eye contact and talking really the equivalent of doing two things at once? If that’s the case, what about walking and talking? Running and talking? Driving and talking? I can do all of these things with no trouble. Sometimes I even talk while walking and chewing gum. How’s that for multitasking?

Moving on . . .

The wrong kind of eye contact!

When Eye Contact Becomes Too Much

The level of discomfort that people on the spectrum experience when it comes to eye contact varies from mild to unbearable. The discomfort also varies from situation to situation. I’m more comfortable making eye contact with people I know very well or hardly at all. People who I know somewhat (professors, fellow students, business acquaintances) are the ones who make me most uncomfortable when it comes to eye contact.

The discomfort goes beyond simply feeling weird. It’s a physical sensation. I physically feel like I can’t continue to look into the person’s eyes a second longer. If I do sustain eye contact beyond that point, I get a strong sensation of needing to flee the room.

The classic “fight or flight” symptoms suggest that my brain is perceiving sustained eye contact with certain people as a threat. Why is this? And why does it happen most strongly with people who I consider acquaintances but not strangers or intimates?

Perhaps it’s because I’m self-conscious about the uneven balance of social power in these situations? The other person is clearly gathering social data from my eyes but I’m not able to do the same. Ironically, given my small range of often inappropriate expressions, what they’re gathering is probably as useless as the fragments of nonverbal communication that I’m picking up from them.

Eye contact with strangers tends to be fleeting and meaningless. The exchange of information feels limited and safe. Eye contact with my husband or daughter, on the other hand, carries none of the social balance of power issues that I feel with acquaintances. I don’t need to worry about what they might be discovering about me or whether I’m missing some key nonverbal cue (because if I am, they’ll tell me).

Acquaintances, however, are still (or sometimes perpetually) in the “getting to know you” stage. We’re feeling each other out, gathering data that will determine the course of future interactions and cement our perceptions of each other.

For NTs, eye contact is a rich and layered language. It’s the conversation within the conversation. As aspies, we’re largely deaf to this language. It’s no wonder it makes us so uncomfortable when others try to “speak” to us with their eyes.

September 5, 2012

When All You Can Draw is a Blank

Right before starting my freshman year in high school, I spent a week visiting my college-age cousin in Brooklyn. It all felt very grown-up, with her living in the studio apartment she shared with a roommate and me on my first extended trip away from home.

She was my favorite cousin–someone I thought was smart and cool and funny–and I assumed she’d have all sorts of exciting things planned for us. Once I got settled in, she asked me, “What do you want to do?”

“I don’t know.” I had no idea. The city seemed impossibly big and, being from the suburbs of Connecticut, I couldn’t imagine what city people did.

She looked disappointed at my answer and that made me a little annoyed. She lived here. Shouldn’t she have a plan? What kind of person invites someone for a week-long visit with no plan?

“What kind of things are there to do?”

She looked at me like what kind of person doesn’t know what there is to do in New York?

We went for a walk around her neighborhood, then we went to paint a room in the brownstone owned by her boyfriend’s medical school professor. The professor was on vacation so we got to cook out in his miniature garden after we’d finished painting.

Throughout the day, the what do you want to do conversation came up a few more times, and each time I could tell she was growing more frustrated, while I grew more panicked.

I truly had no idea what I wanted to do. She couldn’t believe this was possible.

I couldn’t even come up with the simplest suggestion like ‘I want a cheeseburger’ or ‘I want to see the Empire State Building.’ Every time she asked what I wanted to do, my mind went completely blank and then flooded with panicked variations of what’s wrong with me?

Because she–and now her boyfriend and roommate–obviously expected me to know what I wanted to do.

Finally, as we were finishing up dinner at the professor’s brownstone, my cousin handed me the current edition of The New Yorker. “Here,” she said, “look through the events in the front and find something you want to do this week.”

“Like what?” I asked, still not getting it.

“Anything,” she replied.

I flipped through the pages, reading the listings for movies and art shows. Choosing still seemed impossible, even now that I had a finite list to pick from. Comparing each option with all the others was overwhelming, and what if I picked the wrong thing and they thought I was weird? I’d learned by then that I had weird interests for my age and gender.

I eventually put the magazine down and the three of them looked at me expectantly. “What do you guys want to do?” I asked.

“Do you like comedy?” my cousin’s roommate asked.

“Yes!” Yes, I did. I loved sitcoms and stand-up comics. In fact, before my cousin moved away, we used to spend hours in her room listening to her Steve Martin albums.

“Why didn’t you say so?” the roommate asked.

Because even though I like comedy and it was a favorite way to spend time with my cousin, it just didn’t occur to me. For an aspie, this is a familiar occurrence. It happens when someone asks me what I want to eat or what my favorite color is or where I want to go on vacation. In my head, these questions have an infinite number of possible answers and I don’t know how to begin narrowing the possibilities down.

The same is true if someone hands me a piece of paper and says “draw something.” My immediate reaction is “but what?” I’m an avid writer, but I never sit down at the computer unless I have a firm idea of what I want to write. To open a blank document with no idea of where I plan to start writing is unthinkable. It terrifies me and would be completely unproductive. I’d be better off taking a nap because at least then I wouldn’t be beating myself up over how bad I am at coming up with spontaneously creative ideas.

“Just think” is a common phrase of encouragement when someone draws a blank. But for aspies, the harder we try, the more elusive the answer becomes. The biggest problem is that when I “just think” in those situations, I’m devoting 90% of my thoughts and energy to the fact that I can’t think of an answer and how stupid that must be making me look.

I there’s a relatively straightforward explanation for why aspies have difficulty with things like deciding what to order off a menu at a new restaurant. The thought process involved in these types of decisions requires us to apply emotional discrimination to arrive at a choice.

For example, in choosing what I want from a menu, I’ll first eliminate the things I don’t like. Then I have to decide what I’m in the mood for. Pasta or soup? A burger or a salad? This usually involves considering what I’ve had for other meals that day or even in recent days, because I like to balance my meals.

It also takes into consideration what the other people at the table are having. I don’t like to order the same thing as anyone else. If possible I’d like my entree to be complementary to my husband’s so we can share. If he gets steak, I’ll get a vegetarian dish or seafood. Finally, I’ll factor in what the restaurant specializes in, giving those dishes more weight based on the reasoning that a steakhouse isn’t going to have good fish (which is probably faulty logic in many cases).

This process of elimination usually leaves me with a few choices, any of which I’d be perfectly happy eating. I could ask the waitress to bring any one of my “finalists” and whichever showed up, I’d be content with it. But restaurants don’t work like that, so I often end up choosing at random. The waitress is standing by the table and everyone else has ordered and I’ll simply pick the choice I was thinking about last or the one my eyes happen to fall on when I look back at the menu.

At restaurants that I’ve visited more than a few times, I don’t have this problem. I order the same thing every time. Olive Garden? Spaghetti and meatballs. Cleopatra’s? The al meriam plate. Rooftop Pizza? The number 6 pizza with artichoke hearts, goat cheese and sundried tomatoes.

A lot of aspies have food sensitivities, which lead to eating a limited range of foods. But for others–those of us with few or no issues about with what type of foods we can eat– the tendency to eat the same thing over and over may have something to do with how hard it is to choose, how much work we have to put into identifying what we like and want at any given moment.

As an adult I’ve learned some strategies that make me look less clueless. If I’m visiting someone’s house and they ask me what I want to drink, I’ve learned to ask, “What do you have?” This has the dual benefit of narrowing down my choices and giving me a few extra seconds to process the choice I’m going to have to make. Same thing with “what do you want to do?” The easiest reply is “what are you in the mood for?” or “what’s fun to do on a Saturday night around here?” NTs have lots of preferences, often strong ones, and are generally happy to lead.

I’m not suggesting that aspies need to be wishy-washy followers, but when you have trouble making choices, a little help from NT friends or relatives helps shorten the list of possibilities and take away those long terrifying moments of your brain chanting I don’t know over and over again.

How did the rest of that vacation go? My cousin and her friends took me to an improv show in a dark little basement comedy club the next night and I loved it. We went to the Museum of Natural History (I fantasized about living in a museum a kid), a street market, an old art film, and an erotic bakery. Her roommate let me help her conduct a phone survey for her sociology class, counting to every tenth name in a random section of the phonebook and dialing the numbers for her. My cousin’s boyfriend took me to spend a day at the psychiatric facility at Bellevue Hospital where he was studying as part of his medical school work at NYU. His professor (whose house we had painted) showed me the film “Everybody Rides the Carousel” about Erik Erikson’s eight stages of life.

Then I got a tour of the massive medical library and the human dissection lab which had actual corpses in various stages of dissection. There was even a cross-section of a penis in a jar, which was morbidly fascinating for a teenage girl. For an entire week, nobody looked at me like I was a weirdo for enjoying picking names out of a phone book or staring into the chest cavity of a corpse or being fascinated by Erik Erikson. It was one of the best weeks of my teenage years.

And a post-postscript: When I searched for “Everybody Rides the Carousel” I found this clip and was reminded about why I was so fascinated by the film. It has a certain nonlinear, demented quality to it that I still find hard to unravel.

September 2, 2012

That’s What Love Is. Thoughts . . .

Are aspies capable of love? Maybe it depends on how you look at it . . .

In the reimagined version of TV series Battlestar Galactica (yes, I’m a geek), two of the main characters have the following conversation:

Adama: Did you love her?
Tyrol: Thought I did.
Adama: Well, when you think you love somebody, you love them. That’s what love is. Thoughts…

If love is thoughts, then it’s the expression of those thoughts that separates aspies from neurotypical people. Aspies tend to express love through practical actions, whereas NTs are more likely to express love through words or symbolic actions.

What do I mean by practical versus symbolic actions? In The Complete Guide to Asperger’s Syndrome, Dr. Tony Attwood tells a story about a diagnostic interview question that he uses with young children. He asks the child what she would do if she came home to find that her mother was standing in the kitchen crying.

Neurotypical children will suggest solutions like giving their mother a hug (symbolic action) or asking her what’s wrong (love as words). Children with Asperger’s will suggest solutions like leaving her alone (being left alone is comforting for aspies) or bringing her a box of tissues (practical action).

To an NT person, I imagine that the child standing there holding out a box of tissues looks rather cold and unfeeling, but even as an adult, this would be my first instinct. Most aspies are not comforted by touch or by talking about their feelings. If anything, either of these would probably be seen as making a highly-charged emotional situation worse.

And even in non-emotionally-charged situations, aspies tend to express love through concrete actions. If my husband goes away on business, I’ll forget to initiate phone calls with him for days on end, but remember the exact day and time to log on to the Southwest Airlines website and do his flight check-in so he gets a good spot in the boarding line. To me, that’s love. I’m doing something for him that will make his life easier in a practical way. To him, love is calling me five times a day just to say hello.

I don’t think either of us truly understands the other’s way of expressing our love, but we’ve become accustomed to recognizing these expressions of our thoughts, and as Adama says in that fictional conversation, that’s what love is. Thoughts . . .

Bridging the Gap

Temple Grandin makes a similar point at the end of her TED talk (which I’m embedding here in case you want to check it out).

The host asks her a number of questions, including “is it unrealistic for a parent of an autistic child to think or hope that their child loves them?” Dr. Grandin pauses a moment and responds, “That child is going to be loyal and if your house is burning, they’re going to get you out.” Then it’s the host who is momentarily speechless, probably because this notion of a child running into a burning building to save a parent doesn’t align with his concept of love.

And here is the root of the communication gap. The host is asking about the symbolic and verbal expression of love but Dr. Grandin is answering in terms of the practical expression of love. In each of their minds, I have a feeling they both start from “love is thoughts” but the way aspies and NTs express those thoughts is so very different.

If you’re an NT with a child, partner or family member on the spectrum, you probably experience this dissonance all the time. Your aspie husband forgets your anniversary but is happy to spend all weekend fixing your car or building the kids a treehouse. If you recognize these gestures for what they are, a practical expression of feeling, you’ll never have to wonder if your aspie loves you.

As an aspie, I’ve questioned if I’m really capable of love or if what I feel is some stunted version of this wonderful emotion that only NT people can experience. Rather than agonizing over it too much, I’ve concluded that Adama is right. If you think you love someone, you do.

August 30, 2012

When Being a Good Girl is Bad for You

Increasingly, experts are realizing that Asperger’s in girls looks different from Asperger’s in boys. Some thoughts on what that means for girls on the spectrum . . .

I was raised to be a good girl. This meant, above all, being seen and not heard. Don’t bother the adults. Don’t make waves.

And this was mostly fine with me. As a child, I spent hours and hours alone. Some of my happiest memories involve going on long bike rides, exploring in the woods, and playing games in my room, all by myself. I remember quite a few fiercely contested games of Risk and Monopoly that pitted me against myself.

My parents never questioned what I did for hours in my room with the door closed. If I disappeared for the afternoon into the woods behind our house, their only concern was that I be home by five-thirty for dinner.

I don’t know what would have happened if I came home at six. I was a good girl and good girls followed the rules.

But the problem with being the good girl, especially if you’re a young undiagnosed aspie, is that good girls are invisible. Aspie boys tend to act out. They have problems with anger management. They’re defiant and oppositional. They’re not team players. They shrink away from competition and refuse to follow the rules.

Years ago these boys got slapped with labels like “juvenile delinquent” and “behavior problem.” Today, out of every ten children diagnosed with Asperger’s syndrome, eight will be boys and two will be girls.

The big question raised by this disparity is: are boys more likely to be aspies or are they just more likely to get diagnosed because their symptoms tend to fit the classic manifestation of AS?

Gender Differences in Asperger’s Syndrome

Dr. Hans Asperger, the researcher who originally identified the symptoms of Asperger’s syndrome, based his definition of the condition on the boys he studied. He found that although they had average or above-average intelligence, the boys had poor nonverbal communication skills, failed to show empathy with their peers, spoke in an overly formal way, were clumsy and were drawn toward all-absorbing interests that dominated their conversations.

Increasingly, experts are realizing that AS in girls looks different from AS in boys. For example, boys are more likely to have a special interest in something mechanical–like trains, engines, or elevators–usually at a level far more intense than is age-appropriate. I read a case study about a teenage boy who was obsessed with cataloging the different types of outhouses found in his region. And recently, on a tour of Washington, DC I sat behind a boy who knew more about the history of U.S. presidents than the tour guide.

This kind of deep, obscure knowledge is an obvious tipoff that a child is a little different.

Asperger Traits in Girls

What does AS look like in girls? As a kid, I collected a lot of things: coins, stamps, baseball cards. I loved to organize my collections and was thrilled when I discovered a new addition at a coin show or in my monthly stamp club delivery. These were somewhat odd hobbies for a seven- or eight-year-old girl but I also played with Barbies, collected dolls, loved to sew my own clothes and voraciously read Nancy Drew mysteries.

Anyone who looked closely enough would have noticed that I spent more time organizing and categorizing my Barbies and their clothing than actually playing with them. That my Nancy Drew mysteries were invariably lined up on my shelf in numerical order. And all of those clothes I spent hours sewing? I rarely wore them. I just liked the process of cutting out the patterns and putting everything together like a big cloth puzzle.

The signs were there, but they were far more subtle than those being given off by the little boy who can identify every WWII fighter plane or wants his dad to drive him all over the state photographing outhouses.

Social expectations may also play a role in the underdiagnosis of girls. It’s socially acceptable (or even desirable) for a girl to be “shy” or quiet. The same passive tendencies in a boy are perceived as a lack of assertiveness, an unacceptable trait for males in our society.

Throughout childhood I heard that term over and over again. She’s just shy. That excused everything. If I didn’t participate in discussions in school, it was because I was shy. If I sat on the sidelines at a birthday party or went off to read in an empty bedroom at a family party, it was because I was shy. If I didn’t want to be in the school play or I didn’t have many friends–all part of my shyness.

It never occurred to anyone to ask why I liked to be alone or had few friends or avoided social situations. I was a good girl. I didn’t make waves. What was the problem?

Aspie boys are more likely to act out, which is a problem. And aspie boys seem to be less adept than aspie girls at learning to mimic social behaviors. Perhaps this has something to do with the nature of how girls and boys play.

Aspies at Play

As young girls, my friends and I often played ‘school’ or ‘house’. These were cooperative role-playing games in which we acted out scenarios like math class or making dinner. As long as I got to be the teacher or the mother, I loved these games. They played into my need for control and my love of organizing.

If I didn’t get to be the teacher or the mother, the game usually ended in a nasty fight between me and the girl who got that role because I couldn’t stand following directions. Other kids’ rules made no sense to me. They felt all wrong. I had to be in charge or I wasn’t playing. Dr. Tony Attwood describes this as “god mode”–the way that aspie kids need to control every aspect of a social situation to make it safe for them to interact.

For whatever reason, my friends tolerated my god mode and hung around, though not all the time. I remember more than a few shouting matches that left me without anyone to play with for the rest of the day.

Unlike boys’ games where there tend to be winners and losers, girls’ games are often based on how well a girl cooperates with the group to create an enjoyable role-playing scenario. Boys’ games are often competitive–from sports to video games–and the incentive to play lies in the possibility of winning. A boy can fit in by being good at a skill. If he can get to level ten on a popular video game or has a good jump shot, he’ll find other kids to pursue his interests with. For a boy, a specialized skill that’s valued by peers may allow him to get by without learning the nuances of building and maintaining friendships.

This may also be why older aspie boys tend to excel at a practical skill, like building computers, writing software code or solving complex math problems. Even in the absence of excellent social skills, this kind of practical knowledge will give them a foot in the door with a peer group.

From their earliest social interactions, aspie girls have more innate incentives to learn social skills–or at least learn to fake them. This may be another reason why it’s easier for aspie girls to stay under the radar as they make their way through the school system and into adolescence. Their social survival depends on it. Perhaps it’s the girls who fail to adapt who are most easily diagnosed. Their lack of social skills often results in the sort of isolation, bullying and depression that set off alarm bells in parents and teachers.

Aspie kids are incredibly adaptable. We learn early on that we’re different–whether some specialist tells us that we are or not. We’re far more sensitive to the world around us–particularly the social world–than we let on. It may not look like it to others, but most aspie kids are trying really, really hard to fit in.

And maybe that was the problem for some of us. We became too good at being good girls, so good that we became invisible. We slide under the radar right into adolescence or early adulthood, maybe even into middle age, before we realize that being a good girl has its limitations. Or perhaps we go to the opposite extreme–from good girl to bad girl in the blink of eye–and the people around us chalk it up to the trials of adolescence or a mid-life crisis.

It’s been tough, realizing that being a good girl isn’t the cure-all that I was raised to think it was. Sometimes, I’ve learned, being a good girl is bad for you.

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Not just a boy thing: how doctors are letting down girls with autism

Blasting Stereotypes in Autistic Females

The Autism Project: Mothers with ASD ask why scientists are missing girls