All posts by musingsofanaspie

Ranting

The One Where the Aspie Rants About Empathy and the Experts

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I just finished watching an educational DVD that was supposed to provide “simulations” to help parents and teachers develop empathy for kids with Sensory Processing Disorders.

And now I’m annoyed.

A sampling of the simulations on the DVD:

  • walk toe-to-toe with your eyes closed to simulate vestibular dysfunction
  • search for an item in your purse with your eyes closed to simulate tactile dysfunction
  • do chair push-ups to simulate proprioceptive dysfunction (huh?)
  • play charades to simulate . . . I don’t even know what the point of that one was except maybe to give one of the participants the chance to make the brilliant observation, “I know that reading facial expression is so hard for kids with autism.”

Oh, the empathy! I feel better already.

I probably could have overlooked the poorly designed exercises and been happy with the tips I picked up on dealing with sensory dysfunction, except for two things. The class of occupational therapy students demonstrating the simulations giggled their way through most of the exercises like they were party games and at the end the instructor wrapped with, “Now that you have felt what it’s like to have a sensory processing disorder . . .”

To which I shouted back, “Lady, you have no fucking clue!”

The simulations on the DVD were the equivalent of closing your eyes for thirty seconds and then thinking you know what it means to be blind.

Caution: Stunts performed on a Closed Track by Expert Aspie

What would the simulations look like if someone who actually knows sensory dysfunction feels like designed them? If that someone happened to be an angry autistic woman who’s had too much coffee, they’d look like this:

Proprioception* dysfunction simulation #1: Welcome to class! Let’s get started with the exercises. As you go to take your seat in the classroom, miscalculate how far you are from the first desk in your row, catching your thigh on the corner of the desk and knocking your classmate’s pen and water bottle to the ground. When you bend over to help him pick them up, bang heads with him. Ignore his exasperated sigh and pretend that every single person in the room isn’t either staring at you or carefully avoiding staring at you.

Proprioception dysfunction simulation #2 (bonus take home exercise): Pick a morning when you’re late for work. As you get ready to head out the door, grab your coffee mug with enough pressure to get it off the counter, but not enough hang on to it. Curse loudly as it crashes to the floor in a mess of shattered ceramic and hot liquid. Curse some more as you cut yourself cleaning up the shards of ceramic (damn you, fine motor coordination).

Repeat daily. Let me know when you’re ready to start adding in the other 6 areas of sensory dysfunction.

Now That I’m Feeling Less Ragey . . .

. . . I’ll try some constructive criticism.

This DVD felt like a misguided attempt at turning SPD into an “experience” to build empathy in OT students. While the sentiment is admirable, I think the big danger is that once someone assumes they know what another person is experiencing, they stop listening.

Perhaps that’s why the creator of this DVD failed so miserably with the simulations portion of the program. If she’d run it by a few adults with SPD, I’m sure the exercises would have looked different. Even better, she could scrapped the simulations altogether and devoted that portion of the program listening to adults and children with SPD talk about what it’s like to have a hypersensitive tactile response or hyposensitivity to pain.

Yes, the instructor on the DVD has an OTR/L after her name. That makes her an expert in occupational therapy, not in having an SPD. A five-year-old with an SPD is more of an expert in what that feels like than an adult with a dozen letters after his or her name.

As someone who struggles with mild to moderate sensory integration issues, I don’t think it’s possible to create exercises that replicate that experience for neurotypical people. And if the goal is to create empathy for people with SPD, I think there are better ways of going about than a few minutes of engaging in a botched imitation of what it might be like to live with SPD.

Empathy is “the capacity to recognize what another person is feeling.” Nowhere in that definition is there a requirement to experience first hand through simulations what the other person is feeling. To recognize what someone is feeling, I’ve found it’s helpful to ask questions and listen carefully to the answers.

As exercises go, it’s a simple one.

And yes, this is the aspie giving advice on empathy. Go figure.

—–

*Proprioception refers to your awareness of the position of your body. You can find a great summary of what types of activities might be beneficial for improving proprioception and other physical attributes in children with autism at Physical Exercise and Autism fact sheet. You can find some examples of therapuetic activities for kids with SPD at Activities for kids with sensory processing disorder.

Communication

You Scare Me

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Last summer, my husband and I had some new friends over for lunch. They brought along their two young boys. Toward the end of the meal, the 5-year-old, who was sitting next to me, looked at me and said, “You scare me.”

This was pre-Asperger’s, so like everyone else at the table, I laughed it off as one of those inappropriate things that kids sometimes say.

Still, his comment stayed with me. I couldn’t figure out what I’d done to scare him. He was a friendly, talkative little boy. I’d showed him how to get my dog to do a couple of simple tricks and had given him some bits of hot dog to use as treats. I’d asked him about his swimming lessons and whether he wanted a dog of his own. I’d cooked him a cheeseburger so he wouldn’t have to eat the fancy grown-up food. He’d even chosen the seat next to me at lunch. I thought we were getting along great!

And then, out of nowhere, he told me that I was scary. I was more puzzled than offended, but there was something about his comment that really stuck in my head. Sometimes when I’d catch people staring at me in a restaurant or a store, his words would come back.

You scare me.

Why?

A Hard Truth

Months later, I was sorting through boxes of photos and it hit me. There it was–there I was–staring back at myself from photo after photo with the dreaded flat affect. Since they say a picture is worth a thousand words, here’s how a flat affect looks:

And to prove that wasn’t just me getting caught at a bad moment, here’s one I actually posed for:

Smile! Or not . . .

These pictures are hard to share. I don’t like looking at them. In fact, I almost never like looking at photos of myself. If I don’t have a blank expression, I tend to look like I’m faking a smile or making an uncomfortable, when-is-this-going-to-be-over expression.

As I was sorting through twenty-plus years worth of photos before we moved, I found dozens or maybe hundreds of pictures of myself with some variation of a blank, checked-out expression. I don’t know why I hadn’t seen it before but there it was. Standing in front of the Christmas tree. Attending a wedding. On vacation.

One after another, I tossed them in the trash bag on the floor beside me, tired of looking at this woman who was starting to scare me.

Flat Affect

From my reading about Asperger’s I was aware of the difficulty aspies have in reading facial expressions, but it hadn’t occurred to me that I don’t project appropriate facial expressions–or sometimes any expression at all.

The technical term for this is flat affect, which means that a person displays reduced emotional expressiveness. It takes a five-year-old to put it in plain English though: you scare me.

Looking at those photos, hundreds of them in a row, for hours on end that afternoon, I finally answered the question why? Flat affect is unsettling to others–it makes me look bored, angry, sad or spaced out at inappropriate times.

To a five-year-old, who is probably relying more heavily on nonverbal than verbal communication to judge adults, my inappropriate or absent expressions were creating mixed messages. Though I was saying and doing “nice” things, the nonverbal expressions I was projecting weren’t the typical “kind, caring adult” cues he was expecting to go with my words and actions.

Maybe I Can Learn to Fake It?

The disconnect between my expressions and thoughts is frustrating. Not only do I have trouble verbalizing my emotions but my face keeps wandering off on its own and freelancing.

More than once I’ve had a professor pause during a lecture to ask me if I had a question. One day, curious about why this happened so often, I finally said, “No, why?”

“Because you’re frowning,” the professor replied.

Surprised at his reply, I blurted out, “I’m not frowning. This is my concentrating face.”

The rest of the class laughed, but the question was right up there with you scare me in how deeply it unsettled me.

Obviously I was projecting something different from what I was experiencing internally. There I was sitting in calculus class day after day, looking confused, but never asking any questions. This made my professor so uncomfortable that he stopped in the middle of his lecture to ask me what my problem was. I wonder if he even believed me when I told him I wasn’t confused.

I wonder how often people think I’m being deceitful because my verbal and nonverbal communication doesn’t match.

This is a problem that feels too pervasive to fix. I’m literally projecting an expression of some sort during my every waking moment. There’s no way I could–or would even want to–pay attention to what that expression is all the time.

There are also plenty of times when my expression does agree with my disposition, especially when I’m genuinely happy.

Here’s a photo taken around the same time as the above two shots, except in this one I was truly happy and look it:

Since that exchange with my calculus professor, I’ve occasionally tried projecting a specific expression. In class, if I noticed a professor glancing in my direction too often, I assumed that I was doing the confused face and tried put on my “interested but neutral” face. I also made sure to nod a lot, a reassuring sign to NTs.

It seemed to help–it at least reduced the number of concerned looks in my direction–but I’m not very motivated to do this on a regular basis. I’ve seen other aspies talk about how acting lessons or practicing in a mirror helped them overcome flat affect. I admire their commitment to doing this–it sounds like it would take a lot of time and practice to get right.

Then again, if I had a job that required a lot of contact with the public, I might have the motivation to put more effort into improving the type of nonverbal cues I project. Maybe somewhere down the road it will be something I’ll decide to try but for now, I’ll just go on scaring small children and bewildering acquaintances.

Motherhood

Asperger’s and Motherhood (Part 5)

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This is the fifth in a series of posts about being a mom with Asperger’s.

As adolescence drags on–yes, some days it feels like it will never end–you may run into some serious challenges. The child who thought you were the coolest mom on Earth suddenly thinks you’re a moron. She doesn’t miss a chance to remind you that you can’t do anything right. That you know nothing. That you’re uncool and out of touch.

These words–and worse, the way they’re carelessly hurled at you–may hurt, but don’t panic. Teenagers all over town are saying the exact same thing to their NT moms and dads. Congratulate yourself on being a perfectly normal parent.

But the wild mood swings, sarcasm, unpredictability and sometimes downright meanness of teeangers can be especially hard on aspie moms. You may not be the most confident mom. Sarcasm, irony and biting humor might go right over your head, making you feel dumber than a box of rocks as your teen patiently explains the joke. And if you’ve shared your diagnosis, don’t be surprised if your teen decides at some point to use that against you. Teenagers are masters of dirty fighting. If it wasn’t your AS, it would be some other vulnerability, so again, you’re no different from the other moms.

Just like when you had that squalling little newborn, this is the time to call in reinforcements. At times you may need to turn over a challenging aspect of parenting to your child’s father, a grandparent or another safe supportive adult in your child’s life.

Don’t be afraid to ask for help if you feel like you’re in over your head. Teenagers can find themselves with adult-sized problems and because of our issues with executive function, we aspies may not always be the best source of guidance when a major crisis occurs. As a parent, you want the best possible outcome for your child, but as an aspie, you may not always be able to work out how to help him get there.

And for everything–big and small–that AS causes you to struggle with as a parent, I guarantee there’s something else that AS will make you amazing at. Your teenager will scoff at your poor fashion sense, but you may be the only one in the family cool-headed enough to teach her to drive without getting into a shouting match at every rolling stop and crooked parking job. And those research skills you’ve developed pursuing your special interests will come handy when it’s time to find the right college (or a good defense attorney).

My daughter’s friends found it amusing that I would spend hours trying to master the Playstation skateboarding tricks that they taught me or that I didn’t care if they wrote all over the wallpaper in her bedroom. More than once I heard the words “your mom is cool” whispered as I left the room.

Still, it wasn’t always easy having kids, and later teenagers, in the house, especially if the visits were unplanned or didn’t have a defined end to them. Even if you’re okay with the noise and mess that teenagers bring into your home, you may find the uncertain nature of their visits hard to handle. I spent a lot of evenings on edge because of the general anxiety caused by having extra people in the house, but I learned to put up with as much as I could, because I knew it was important for Jess to be able to invite friends over and have a relatively normal social life.

If your teen is sympathetic, it may help to sit down with him and discuss why certain ground rules are important to you. For example, if you need a quiet, safe place to escape to, it may be important for you to not have anyone upstairs where you can hear them when you retreat to the sanctuary of your bedroom. Perhaps you need the kids to clean up their messes or not cook foods with strong smells. Visits may be more tolerable if your teen limits her guests to just a couple and respects your need for the visit to end by a specified time.

As the parent, you still have a lot of control over what happens in your own house, even as your children approach adulthood. While asking your teen to make accommodations for your AS might mean that the rules at your house are stricter or stranger than those at her friends’ houses, those rules might be the difference between you being able to enjoy having your teen’s friends in the house or dreading it.

Next in the series: Am I contagious?

Communication

How Asperger’s Taught Me to Hate the Phone

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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.

Emotions

Happiness, Aspie Style

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“Are you happy?”

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

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

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

Okay, how about this: Are you elated?

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

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

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

Constellation of Happiness

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


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

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

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

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

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

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

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

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

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

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

Feelings or Feeling?

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

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

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

More Constellations to Come

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

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

A Postscript

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

Motherhood

Asperger’s and Motherhood (Part 4)

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This is the fourth in a series of posts about being a mom with Asperger’s.

If your middle school years were anything like mine, you may find yourself dreading them on behalf of your child. Middle school is an awkward time, at best. For many adult aspies, it was the time when our differences started to become very obvious to ourselves and worse, to our peers.

If your child isn’t an aspie (or even if she is), she might have a much easier time of middle school than you did. Try to be neutral about what she can expect as she prepares to make that transition and don’t be surprised if your neurotypical kid is more successful than you were.

Even if your son or daughter suffers only the usual trials of puberty and adolescence, you should be prepared for how the milestones during these years might affect you. It’s possible that your child’s first day of middle school might go great for him but end up triggering an anxiety-induced meltdown for you. Your daughter’s first school dance, big game or sleepover party may bring up memories of your own early adolescence that you’d rather forget.

When I felt this happening, I tried to remember that my daughter was a very different child than I had been. She had her own adolescent anxieties and the last thing she needed was for me to impose my own issues on her. When a crisis arose, I did my best to listen and try to understand what she was facing. This is a big challenge for aspie moms. First of all, we tend to assume that everyone thinks like we do. Empathy is one of the hardest NT qualities to “fake.” We also have a tendency to want to fix stuff when often what our kids needs in a crisis is compassion, understanding and reassurance. And love.

If you find that empathizing is a challenge, practice listening quietly. Then ask “how can I help?” or “is there something I can do that would make you feel better?”

If you have the benefit of a diagnosis, consider sharing that with your adolescent child. Disclosure is a complicated subject and each family handles it differently.

Most experts agree that a middle school age child is old enough to understand the basics of what AS is and how it makes you different from the average mom. Middle schoolers are also old enough to be asked to make simple accommodations, like telling you as concretely as possible what they need or want from you if you’re having trouble figuring it out. Of course this isn’t ideal–at times your child may protest that you’re the mom and you just know this stuff.

There are nuances to social interaction that are lost on aspies and one of them is the idea that knowing what someone is feeling suggests a higher level of caring than having to be told. This is a good opportunity to remind your child that you do care about him and that’s why you’re asking for some extra help in understanding what he needs or wants from you. Also, try to remember that all parents struggle when it comes to figuring out their adolescent children.

The middle school years also bring intense peer pressure. Being raised by an aspie mom seemed to inoculate my daughter against peer pressure to some degree. I’ve always been obliviously, even proudly, different from my peers. Peer pressure doesn’t have a lot of effect when you’re used to being on the outside looking in at your peer group. While this wasn’t something we ever talked about, I think my attitude rubbed off on Jess in positive ways. She’s always been very individualistic and even today she takes the view that if people don’t like her for who she is then it’s their loss.

Next in the series: Lurching Toward Adulthood

Voices on the Spectrum

See. Understand. Experience. Autism.

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This morning I wrote a post about adult autism. I came to the keyboard armed with statistics. I hashed out arguments. I agonized over the wording. I framed my life in terms of the grim numbers I’d found in the research.

When I was finished, I walked away from the computer feeling unsatisfied and restless. Does knowing that 14% of adults with ASD are married or 25% have at least one friend really mean anything? We can create a composite of averages, saying this or that about adults with autism, but that composite person doesn’t exist.

The average American family has 1.86 children. Do you know anyone who has 1.86 children? Of course not. The averages are just that. Fictional composites created by aggregating data and finding the mean. Ironically, that mean often doesn’t exist.

We can’t define autistic adults using averages any more than we can have 1.86 children in our family.

Starting Over

Tonight, I did what writers do. I deleted four hours worth of work and started over.

I decided to leave the statistics to the people who really need them, the advocates and policy makers, for whom they are tools of the trade.

Through the lens of humanity, quantifying something so complex and varied is a futile undertaking. The minute we divide ourselves into those with friends and those without, those with jobs and those without, those with partners and those without, we set up a false dichotomy.

Life is a journey, not a snapshot. We may shift in and out of those categories on our journey. We may intentionally choose not to join one side or the other. We may choose not to be quantified according to another’s standards of functionality.

We are individuals and as such we can only be understood as individuals, one at a time.

As I so often do, I went to the opposite extreme in search of inspiration. I abandoned statistics in favor of Tibetan Buddhism.

If I could explain in words how I got from one to the other, I would, but the closest I can come is this: I found myself standing so close to this subject that I felt blind to the shape of it and as I struggled for a solution, shuffling through bits of ideas and images and memories in my head, puzzling out how to describe something that refuses to take a single shape, I came upon a fragment of the quote below, stored up from some long ago reading or lecture:

Click on the photo to see a larger version of the saying                                                             photo: By Ben Tubby (originally posted to Flickr as Makalu) CC-BY-2.0 via Wikimedia Commons

Like the mountain, our lives need to be observed at a distance. To take any one moment and say it defines who I am is to diminish the whole of me, the greatness and complexity of all that I’ve been and will become.

Like the mountain, the form of our lives can only be understood fully by taking stock from all sides. Look at my life from one side and it looks dull, flat, unformed. Look from another angle and you’ll find texture and depth, hidden crevices jagged with fallen rocks and outcroppings worn smooth from the battering winds.

Like the mountain, experience reveals us to ourselves. Walking through rain and snow, basking in the sun, weathering the storms, we find our strength and frailty, we form bonds with others and choose which paths to walk alone.

With each passing season, I feel myself growing and changing, sometimes subtly, sometimes violently, but changing, always changing.

To see, to understand, to experience.

Instead of the statistics I’d planned to leave you with, I’ll give you people, others on the spectrum who are sharing their stories in their own words:

Amy Sequenzia (@ ollibean)
Anabelle Listic
Aspects of Aspergers
Aspergirl Maybe
The Asperger Cafe
Aspertypical
Autism Raising Autism
Bridget
Catastraspie
coyotetooth13
Fionn
E (The Third Glance)
Elizabeth J. (Ibby) Grace
Gretchen Leary
Happily Clueless
Henry (@ollibean)
Inner Aspie 
Jeannie Davide-Rivera
Lydia Brown
Lynne Soraya
Mados
Neo
Quirky and Laughing
Radical Neurodivergence
Sadie
Samantha Craft
Spectrum Scribe
The Caffeinated Aspie
Unstrange Mind
Yes, That Too

See.

Understand.

Experience.

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Communication

Eye Contact: The Conversation within the Conversation

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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.

Motherhood

Asperger’s and Motherhood (Part 3)

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This is the third in a series of posts about being a mom with Asperger’s.

As difficult as I found being the mom of a newborn, I really enjoyed being the mom of a toddler. Suddenly this demanding little creature was starting to walk and talk and explore the world around her. She was still demanding and unpredictable and messy, but she was also lots of fun.

Aspies are blessed with a childlike sense of wonder and innocence that never really goes away. Discovering the world all over again alongside your child is an incredible experience. And when your little boy or girl develops a fascination with butterflies or dump trucks, you can put your aspie tendencies to work: visits to the library, field trips to construction sites, collecting things!

As an aspie, you’ve already mastered one of the keys to parenting a toddler: routine. I’m betting you’ll find nothing wrong with reading Goodnight Moon every night before bed, six weeks running. If your toddler insists on watching the same episode of Blue’s Clues three times in a row, you’re not gonna be the mom who tells him how great it would be to watch something new once in awhile. Your son has to have one special toy with him everywhere he goes or your daughter wants to wear the same sundress every day of the summer? Makes perfect sense to me.

Jess at 17 months

When your two year old starts asking “why?” in response to everything, your natural aspie response will be to explain why the wind blows or why dogs bark. Your toddler will not only end up with vast amounts of esoteric knowledge, but she’ll learn that asking “why?” is a good thing.

Socializing Your Toddler (and maybe yourself)

On the downside, much of your toddler’s social life may depend on your own ability to socialize. Toddlers meet and play with other toddlers at playgroups, the park, and other “mom & me”  events. If your inclination is to avoid social situations, you may find the neighborhood “mom & me” playgroup unappealing. I certainly did. But I also knew that my daughter needed to play with other toddlers. She wasn’t in daycare, so until she was old enough for preschool, it was up to me to make that happen.

So off we went to learn how to finger paint and make macaroni necklaces.

The funny thing about these playgroups is that the moms are there as much to make friends for themselves as they are to socialize their children. This can be a great way for you to make friends around a shared interest (your toddlers!) but it’s not required. If the idea of spending a few hours at someone’s house while your kids play makes you uncomfortable, it’s fine to say thank you but you’re rather busy outside of playgroup.

I accepted exactly one play date invitation from another mom. It wasn’t a disaster, exactly, but it was a classic case of ‘wrong planet’ syndrome. The other mom and I had little in common and I didn’t have the social skills to bridge the gap. Looking back, I realize that we could have spent the hour talking about our toddlers. Faced with this situation now, I would have used the drive to her house thinking up suitable small talk questions. I also know now that “yes” and “no” are conversation killers, even when they’re accurate answers. When she asked me if I liked the playgroup, she didn’t want a literal answer, she was trying to elicit information to continue the conversation. A more suitable answer would have been something like, “Jess really enjoys storytime. Which activities does Peter like best?”

Jess had a great time playing with her new friend and I toughed it out for her, but that was the first and last playdate that required my attendance. Because I wasn’t armed with even the rudimentary social skills that I’ve since developed, I struggled to connect with someone who was reaching out to me and missed the chance at making a friend. Instead I came away thinking that there was something wrong with me and decided that it would be safer to decline future playdates rather than suffer through the kind of self-doubt I felt for days afterward.

Looking back on times like this, it’s easy to regret not knowing about my AS. It’s easy to say that it would all have been different if only I’d known this or done that. But I’m not sure it would have been that different. Today, if I was the mom of a toddler and another mom asked us on a playdate, I might be more likely to accept than I was twenty years ago, but I don’t think I’d necessarily enjoy it the same way a typical mom would. And I’m okay with that now.

Out Into the World 

As your child enters the preschool and early elementary school years, she’ll be old enough to go on playdates by herself. You may find this to be a great relief. I certainly did. Jess was good at making friends. Seeing her develop her own social network was exciting.

I’d never been good at making friends, but she seemed to have some sort of magic natural instinct for socializing. Maybe that’s just her personality or maybe she was compensating for my deficits. While the other kindergartners’ moms were arranging playdates for their kids, Jess was pretty much on her own. If she didn’t go out and find some kids to invite over after school, she wasn’t going to have much of a social life. But she quickly made friends and that paved the way for the years ahead.

And with friends came all sorts of new questions. There’s a lot of unfiltered knowledge floating around out there on school buses and playgrounds. As an aspie, you may be less shocked than the average mom by some of the questions your youngster comes home with. You also may be able to answer a lot of them without having to use your Google-fu.

As a result, your child will not only feel comfortable coming to you with questions, but you may find that your natural tendency toward bluntness combined with a higher than average level of emotional detachment actually creates a very open relationship. This tends to result in your child being willing to ask you anything or tell you everything. By the time she gets to high school, you’ll realize that in some cases, 90% of everything is more than enough.

Next in the series: How am I supposed to get this kid through middle school when I barely survived it myself?

Diagnosis

I am Asperger’s, Asperger’s is Me

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An autism diagnosis changes everything. Life after autism will never be the same. Or will it?
Painted Desert National Park, Arizona, January 2008

Before I studied Zen, mountains were mountains, and water was water.
After studying Zen for some time, mountains were no longer mountains, and water was no longer water.
But now, after studying Zen longer, mountains are just mountains, and water is just water.
~ Ch’ing-yüan Wei-hsin

An autism diagnosis is a lot like this. Inevitably, there is Before and After.

Before, I was me and Asperger’s was Asperger’s. My thoughts and actions were shaped by my personality, my upbringing, my environment and my choices. I thought of them as my own. Asperger’s Syndrome was something that described other people.

After learning that I have Asperger’s, I was no longer me and Asperger’s was no longer a label applied to others. Suddenly, I was Asperger’s and Asperger’s was me.

After, everything I do, say, think, feel, experience is Aspergerized. Exhausted after a long shopping excursion? Sensory overload. Tripped and fell while running? Motor planning deficit. Didn’t think to send my daughter the title to her car when she told me she was selling it? Poor executive planning.

“I’m an aspie” is my default explanation these days. I no longer know where Asperger’s ends and I begin–yet I constantly attribute my actions, thoughts and behaviors to this separate thing called Asperger’s.

While I appear to have a deeper understanding of myself thanks to my newfound understanding of how Asperger’s influences my behavior, there is a long journey ahead before “mountains are just mountains.”

The me that I was before learning about Asperger’s will never exist again. But the me that I will become–the me that no longer needs to differentiate between Asperger’s and I–that me is still a long way off.

When I arrive in the place where I can say I am just me and Asperger’s is just Asperger’s, before and after will cease to exist.

In that place, there is only now.

Bandelier National Monument, New Mexico, Oct 2006