The Scientist and I went out to dinner last Friday night. It was the day after I’d taped my radio interview and I was feeling wiped out, so we decided to treat ourselves.
During the course of dinner, the waitress made many visits to our table, asking the questions that waitresses do.
How are you tonight?
Would you like me to bring any ketchup or hot sauce?
Is there anything else I can get you?
Would you like more water?
Do you want to see the dessert menu?
To every one of those questions (and perhaps others I don’t remember) I replied, “I’m good.”
“I’m good” made sense the first time and is an okay answer for the others, assuming I didn’t actually want more water or a dessert or need anything else. Except that I did want more water. I was just too tired to override the default script my brain had settled on and by the time I realized what had happened, she had disappeared into the kitchen.
Thank you to everyone who shared their stop sign photos over the past week. We have a couple dozen so far. I’m going to post them next week so there’s still time to share yours! Don’t be shy.
From the Unfiltered Aspie File
Last Friday The Scientist and I went to buy dog food. We couldn’t find the usual brand so we were walking around the store browsing when I spotted an employee standing in a doorway near the back. I asked him about the brand I was looking for. He said it had been recalled and we talked about alternative brands. He seemed a little skittish as he said he would show me the brands he’d mentioned but I dismissed it as the usual sort of effect I have on strangers.
When we got out in the parking lot, The Scientist said, “Did you realize that the guy you asked about the dog food was standing in the doorway to the employee bathroom?”
“Uh . . . no?”
“He was drying his hands.”
All I saw was a doorway and a few cartons stacked against the wall, which led me to assume it was a storeroom. No wonder the guy looked so nervous.
For the past few months I’ve been living across from a train station. It’s a small historic depot that still has freight and light rail commuter trains coming through all day and night. When we looked at the apartment, the salesperson cautioned us that the trains are required to blow their whistles as they come through the intersection at the corner. She warned they’d be louder in the front of the building.
We ended up at the back of the complex–for reasons that have nothing to do with the trains–but I still hear the whistles plenty loud. I can’t say I mind much. They give a rhythm to the day. And if it’s a freight train and it’s moving fast enough, I can hear the rumble of the engines–two or three usually–and the long line of cars they’re pulling.
Predictably, stereotypically, I’ve always been drawn to trains. The model train set I had as a kid. The big empty echoy boxcars that used to park behind my dad’s workplace. Trains I spied from the backseat, passing in front of our parked car and alongside highways. My first real train ride, through the countryside of a place as foreign and unreal as the new life I’d suddenly stepped into. Then, years later, living in the Southwest, where you can see an entire train at once, a hundred or more cars long, racing beside you on the highway, stretched out across a mesa, end-to-end, small against the infinite sky.
But it wasn’t until recently, standing beside the tracks, that I figured out the attraction for me: patterns and sounds. The resonance of the freight trains. Standing next to the tracks, feeling the rumble resonating in my chest is one of my new favorite sensory treats. That and watching the cars pass. Tankers. Box cars. Flatbeds. Grain cars. If you just stare at one point, you get car-space-car-space-car-space, over and over and over, at regular intervals,six of this kind, ten of that, almost never just one of anything.
Saying “no” is hard. Often when I say no, I feel like I’m disappointing the other person, like I’ve somehow failed.
This probably sounds funny coming from someone who not too long ago wrote about her “no reflex” but there are two categories of no for me. There’s the reactive no–the one that just pops out because I can’t deal with change or spontaneity. I might feel momentarily bad but don’t get all twisted up inside over it.
The other no–the one that hides and cowers and wakes up the butterflies in my stomach with its nervous pacing–is the no that makes me feel like I’m failing. The hard no is often a result of tension between what the other person wants and what I can feel like I can reasonably do. It’s often tied in with adult social obligations, the sort encountered by parents, spouses, adult children, employees: the neighborhood book club, the PTA committee, the office holiday party, the class research project.
When people ask others to join, volunteer, lead or otherwise participate in something, they do it with such a hopeful, expectant tone of voice. The implication is “how can you refuse this excellent thing that we’re all counting on you to be a part of?” And so often, that excellent thing just feels like a burden to me.
Saying no, however, is going to lead people to make assumptions. I’m not pulling my weight. I’m standoffish. We’re not as close as they assumed. I think I’m better than other people. I just don’t care.
All of the other moms are on a committee. All of the other parents have coached a season of rec sports. All of the other wives will be there. All of the other cousins are going to the wedding. All of the other students in the department are attending graduation. All of the other neighbors are baking for the fundraiser.
Of course not literally all of the other ______ are doing anything, but that’s what the person asking will imply. Everyone else is doing it, what aren’t you? Or worse, not enough people are doing it, I’m counting on you to help me out.
This is peer pressure at its most insidious. The hints that doing this thing makes you normal or a better person or not a bad person are powerful, especially when you’ve been raised and socialized to feel like fitting in and being normal are a primary goal.
And here is where we come to the crux of the issue. Autistic children are often grow up with a strong desire to fit in, to be liked, to be normal and/or to not get into trouble. We aren’t necessarily taught that we have the right to decline activities that uncomfortable or that we can sometimes put our needs first.
Learning to Say No
No comes from different places for different people. Strong boundaries. Good social skills. Explicit instruction in saying no as a child. Good self-esteem. A general orneriness.
If no doesn’t come naturally or has been socialized out of us, we can still learn to say no. This is where scripts come in handy. Not only do scripts give us the words that we might find unnatural, they prevent us from accidentally saying yes when we mean no.
Social communication is fraught with code words and unspoken communication. If your no is too soft, it can be misconstrued as a yes. For example, if you mean “no” don’t say “I don’t think so” or “I shouldn’t.” This can be interpreted by the other person as an open invitation to persuasion, negotiation or further discussion. You may find yourself feeling bullied into a “yes” when you already thought you’d said no.
If you mean no, unless you clearly and unambiguously say “no” the other person may think you’re being polite or coy.
But how to do that?
Saying No 101
I’ve always secretly wished there were social skills classes for adults. Then, recently, I realized there is something very similar: etiquette. On a whim, I’d checked Emily Post’s aptly titled Etiquette out of the library. And guess what? It’s loaded with not just advice but scripts. Lots and lots of them.
Emily Post and the people who now edit her books have spent a great deal of time figuring out the polite thing to say in just about every imaginable situation. Did you know that saying no can be as simple as:
“Would you like to come with us to lunch?”
“No, but thank you for inviting me.”
That’s right, you can simply say “No, but thank you for [asking, inviting, including, thinking of] me.” No further explanation necessary! This was a revelation to me because I always thought I needed to provide an excuse when declining an invitation.
You can, of course provide an (honest) excuse if you have one:
“No, I have plans for this weekend, but maybe next time.”
“No, I can’t make it this time. Work/school is too hectic.”
When providing an excuse, be careful not to put off for the future something you have no intention of ever doing. Saying, “Work is really busy right now” opens the door to getting the same request next week. If the request is something you don’t want to do, remove the invitation for a repeat inquiry by saying, “My schedule is full right now. If that changes, I’ll let you know.
And for those of us with food sensitivities and allergies, here are a couple of simple, polite phrases for declining food offered by a host(ess):
For foods you don’t like, a simple “no, thank you” is fine.
For allergies, intolerances or diet restrictions, you can say, “________ is off limits for me, but everything else is wonderful.“
Polite. Straightforward. Inoffensive to your host’s cooking. Again, no need to offer a lengthy explanation or get into why you couldn’t possibly put a single piece of creamed spinach in your mouth without dying of sensory overload.
Beware of Traps
Not everyone knows how to politely take no for answer. People often try to guilt or bully others into saying yes, even after they’ve said no. Don’t fall for mind games:
Just because someone compliments you, you don’t have to say yes to the request that follows. For example, Mary says, “You’re the best web designer/babysitter/cake baker in the world. I know this is last minute, but could you [do some task that you don’t have time or energy for]?” Instead of feeling flattered/guilted into saying yes, you can say, “Thank you, but I don’t have time right now.” Politely acknowledge the compliment, then follow with a firm unapologetic no.
Peer pressure doesn’t end in high school. If someone prefaces a request with “Everyone is . . .” or “You’ve got to . . . ” beware. Don’t cave in to the bullying–instead politely decline with a simple, “I can’t right now.” Repeat as necessary.
Don’t allow others to trick you into doing something by making you feel sorry for them. A simple “I’m sorry you’re feeling overwhelmed, but I have my own deadlines to meet” is sufficient for turning down an unreasonable or inappropriate request.
Even well meaning people sometimes have trouble taking no for an answer, as Mados vividly illustrated in her recent post “Parties & Irrelevant Pity“. Saying no can be a complex social exchange and one that requires a lot of practice to do well. Scripts like the ones Emily Post suggests are a good starting place, especially for those of us who struggle with how to phrase things as well as how to maintain boundaries.
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:
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.
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.
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.
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.
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.
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.
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.
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)
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.”
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.
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?
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.
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.
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.
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.
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?
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?
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.
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:
(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:
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 . . .
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.