The response to the relationship survey last week was fantastic! People continued adding answers all week, so you might want to pop back there and read the latest responses if you haven’t.
This week we have 8 questions about sensory sensitivities and 6 about work/school. You can answer here in the comments or anonymously at Survey Monkey. I’ll bring the Survey Monkey answers over and paste them as comments.
A reminder: this is open to all those who identify as on the spectrum (professionally diagnosed, self-diagnosed and suspected aspies/autistics/people with autism). Answer as many or as few questions as you choose. Tell us about yourself. Have fun!
I’m so excited by how many answers each person got to their question last week. Y’all are awesome. On to the questions . . .
Does anyone else in the adult autistic blog-munity have issues with temperature sensitivity? If you have issues with heat, how do you cope with summer weather? With the effects of exercise? more details here
For those who have hyper-sensitivity to light and sound: How do you cope when you find yourself starting to get overwhelmed, but can’t leave immediately? How do you recognize when you’re starting to hit that point of sensory overload? How do you deal with the aftereffects of the overload – and what aftereffects do you notice? How long can it take to deal with the aftereffects? more details here
What texture sensitivities do you have? What specific textures are bad? How does your body react to them? more details here
Bras. Do you also find them very stressful to wear? If so, have you come up with a solution to that?
Shoes. Do you have difficulty finding comfortable shoes? What is your preferred choice of footwear?
Does anyone else find showers almost physically painful?
About sensory issues, how did you react to a overload and did you know at first why you reacted this way? Or was it simply a reaction without really know why you were annoyed/angry/overreacting?
How many of us here find earplugs and Mp3 player to be important when going out? Does the stress level go up when you can’t have it on when being stuck in crowed or noisy places?
What kind of job would be right for your own ‘brand’ of autism?
If you work, how do you cope with your errors in understanding they way that most humans think and behave, not just non-verbal language, but office politics and similar inexplicable behaviours?
I get very anxious about interviews – what strategies do you have to cope with these?
How do you deal with being bullied at work? (or anywhere else)
How do you get a job if you can’t use the telephone?
Have you ever asked for accommodations at work or school? How did it go?
Polly Flinders was the bane of my childhood. I hated her with a passion. Why? Because she made dresses like this that were all the rage for little girls in the seventies:
For a four-year-old with tactile defensiveness, that dress was an instrument of torture. I can still feel the exposed elastic biting into my upper arm, the scratchy lace prickling my skin, the rasp of the tag on the back of my neck, the smocking bunching up across my chest.
Thanks to Polly Flinders and her ilk, I was branded a tomboy early in life. Not because I didn’t like dresses, per se. The way clothing feels is ten times more important to me than how it looks and “boyish” clothes (jeans, plain cotton shirts) were more comfortable.
I still shop for clothing based on feel first and look second. Where a lot of women see exciting new outfits, I see this:
Clothes shopping is a matter of eliminating the things I know will be too uncomfortable then choosing what I like from the remaining options. If there are any.
When I do find something I like–and by like, I mean something that’s comfortable–I tend to buy it in multiples. I have a rainbow of v-neck t-shirts and long sleeve tees, all exactly the same brand, style, material and cut. Last weekend, I found a soft comfy sweater at Old Navy and bought it in three different colors.
When I like something, I’ll wear it until it literally falls apart. The few things I really love–my favorite pair of jeans, my softest t-shirt–I put on as soon as they come out of the wash. They rarely get hung up in the closet.
That isn’t to say that I live in tees and jeans. I have some dressier clothes that are comfortable. I try to dress both comfortably and appropriately for the situation. You’re just not going to find me greeting my husband at the door in pearls and heels like June Cleaver. Continue reading Tactile Defensiveness→
Like a lot of what I experience because of Asperger’s, until I started reading about insomnia, I didn’t realize that I’ve suffered from it on and off since I was a child.
Apparently, I’ve always had slightly abnormal sleeping habits. Sometimes it takes me a long time to fall asleep. Some nights I wake up a half dozen times; others (like today) I wake up at 3:00 AM feeling like it’s the middle of the afternoon. I can hit the ground running at 5:00 AM with an energy level that seems to piss people off.
In more technical terms, I have classic signs of autism-related insomnia:
prolonged sleep latency (time to fall asleep)
reduced sleep efficiency (decreased time asleep/time in bed)
reduced total sleep time
reduced sleep duration and continuity
night awakening exemplified by of long periods of time awake1
I was shocked to learn that the prevalence of insomnia in children with ASD is 40% to 80%.2 When you read about typical symptoms of autism and Asperger’s, sleep disturbance is not only missing from the core list of diagnostic symptoms, it’s rarely mentioned at all.
A Budding Insomniac
My parents adopted a benign disinterest when it came to my sleep habits. They put me in bed at eight o’clock and the rest was up to me. I’d make multiple trips to the bathroom for a drink of water or to take one last pee (three or four or more times) but as long I didn’t bother my parents, they didn’t make a fuss about whether I was actually sleeping.
I had a nightlight beside my bed and most nights I’d hang over the side of the bed, reading until I felt tired. Before I was old enough to read, I would sit at the top of the steps and listen to what was going on downstairs to pass the time until I felt tired. In my teens I got a portable black and white TV for my birthday and I’d watch TV, using earphones so I wouldn’t get caught.
I think my parents knew about these habits–they occasionally pointed out that I’d go blind if I kept up my “reading in the dark” and more than once they shooed me back to bed from the bottom of the steps. On an average night, though, my parents’ bedside lights had been turned off by the time I made my last couple of trips to the bathroom.
When I woke in the night, which happened most nights, I’d call my dad and he would lie down in my bed while I went to the bathroom. I’m not sure what purpose this served except that I remember being a little afraid of the dark after walking into a wall and getting a bloody nose one night. I guess it was reassuring to know that if I did it again, at least my dad would be there to hand me some tissues.
My parents’ laissez-faire attitude toward my sleep problems taught me two things: (1) it’s not a big deal and (2) you’re responsible for putting yourself to sleep. The second part sounds a bit harsh, but because they never made an issue out of when or how much I was actually sleeping, it never felt that way. A little lonely perhaps, but I also liked those few hours at night when everyone else was asleep and the house was quiet. I got to indulge in my special interest (reading) and that was calming, which eventually lulled me to sleep.
Granted, if I’d been destructive or intent on going out to roam the neighborhood, this strategy wouldn’t have worked.
What Works for Me
As an adult I’ve learned that having the right sleep conditions makes a big difference for me. Some things that help me sleep better:
1. Plenty of exercise during the day. I need to be physically tired to sleep well so getting in at least an hour of walking, running and/or swimming every day is essential.
2. Heavy blankets. The slight pressure of a heavy comforter and blankets relaxes me. If I only have a sheet or light blanket, I’ll wake up repeatedly.
3. A cool room. I tend to overheat when I sleep. I’m not sure if this is Aspergers-related, but if the room is even slightly warm, I’ll wake up sweating.
4. Comfortable clothes. As a kid I wore snug fitting pajamas. I still can’t sleep in anything that’s too loose, like a nightgown, because I end up feeling like it’s strangling me the first time I turn over.
5. Familiar surroundings. It’s much easier to relax when I’m in a familiar environment. If I go on vacation or move to a new place, it takes me a few days to “learn” to sleep there because my brain needs to catalog the unfamiliar sounds and smells.
6. A quiet environment or consistent noise. I need either total quiet or a consistent natural noise (wind, waves, steady traffic) to fall asleep. Something like intermittent voices, a radio or a television–even one playing in the apartment above or below me or in an adjoining hotel room–will keep me awake until it stops. In fact, I’ll usually be awake long after it stops because of the anxiety it generates.
7. A dark room. I can’t sleep unless the room is completely dark. Light shining in my room through a window or under/around a door will keep me up. The flashing light of a muted television drives me nuts.
8. Reading (or enjoying a special interest) before bed. Reading has been one of my special interests since childhood. Like any special interest, it distracts and calms me. I think it’s also become a sleep cue. When I pick up a book in bed, my brain starts sending out sleep signals to my body. It usually only takes 15-20 minutes of reading before I start to feel myself drifting off.
9. A light dinner and no snacks after dinner. I fall asleep faster and sleep better if I have a low-fat, low-sugar dinner and give myself at least a few hours to digest it before going to bed
Those are the things that I’ve discovered over the years work for me. I’d love to hear from others on the spectrum who’ve discovered tricks for getting to sleep or staying asleep.
Recently I was talking with my daughter about my sleep habits and she asked why I don’t try to resolve my insomnia. I told her that it doesn’t bother me–I use my middle-of-the-night time to read or think–or impact my daily life. Her response was, “Maybe it does impact you and you don’t realize it because you’re so used to it.” There’s a lot of wisdom in that statement. Something to think about, for sure.
(Unless you’re a geek like me, you can safely stop reading here.)
A Little Geekery About Melatonin and Circadian Rhythm to Wrap this Up
There are a few theories about why so many people with ASD have sleep problems. One of the most prevalent theories points to abnormal melatonin levels.2 Consequently, many children with ASD-related insomnia are given melatonin to induce more regular sleep habits. From what I’ve read anecdotally, this works well for many children and results in unacceptable side effects for some.
Another, lesser-known theory that caught my attention suggests that neurodevelopmental disorders increase the likelihood of sleep disturbances due to an inability to perceive and interpret sleep-related environmental cues.3 This is obviously far more difficult to measure and quantify in a lab than melatonin levels (which are easily measured in blood plasma). But it got me digging for more details because so much of my Asperger’s seems to trace back to the dysfunctional processing and filtering of my environment.
Caution: amateur scientist at play: I learned that our circadian rhythm (the internal clock responsible for, among other things, when we sleep) relies on external inputs to regulate sleep. The natural light-darkness cycle is the primary input, but our circadian rhythm can also be affected by our rest/activity schedule, mealtimes and social interaction. All of these inputs pass through a “central pacemaker” in the brain, which “outputs” various hormones that act as signals to the rest of the body and regulate the sleep-wake cycle.
Here’s a nifty graphic showing the “input” and “outputs” of the human circadian system4:
The really interesting part is that the body can’t maintain an accurate 24-hour circadian rhythm without the input of environmental cues. Our natural circadian rhythm, in the absence of environmental cues, is 25-27 hours. Whoa!
Perhaps dysfunctional processing of one or more circadian inputs throws off the circadian rhythm, leading to the abnormal levels of melatonin (a key output) found in many people with ASD.
The dysfunctional processing theory would explain why many of the things I do to help me sleep better qualify as circadian inputs: exercise, consistent activity cues around bedtime, no eating close to bedtime, and a dark room. Over the years I’ve developed inputs that tell my body loud and clear: calm down and go to sleep.
It doesn’t always work but I have a feeling things could be a lot worse.
1Goldman, Suzanne et al. “Parental Sleep Concerns in Autism Spectrum Disorders: Variations from Childhood to Adolescence” J. Autism Dev Disord, 2012, (42) 531-538.
2Souders MC; Mason TBA; Valladares O; Bucan M; Levy SE; Mandell DS; Weaver TE; Pinto-Martin D. Sleep behaviors and sleep quality in children with autism spectrum disorders. SLEEP 2009;32(12):1566-1578.
3Williams, P. Gail et al. “Sleep problems in children with autism” J. Sleep Res. (2004) 13, 265–268.
4Escames, G., Ozturk, G., Baño-Otálora, B., Pozo, M. J., Madrid, J. A., Reiter, R. J., Serrano, E., Concepción, M. and Acuña-Castroviejo, D. (2012), Exercise and melatonin in humans: reciprocal benefits. Journal of Pineal Research, 52: 1–11. doi: 10.1111/j.1600-079X.2011.00924.x
This is the 2nd part of a 4 part series about the lessons my husband (NT) and I (aspie) have learned during the 25 years we’ve been married.
Accept that aspies have good days and bad days.
I try hard to keep some of my more annoying aspie traits under control, but there are times when symptoms that I thought I had a handle on suddenly resurface or worsen. This tends to happen when I’m stressed or anxious.
A few weeks ago, an unplanned four-hour wait at the DMV triggered a bout of perseverative thinking. Even though I was aware of it, it was difficult to stop going over and over the situation in my head and, worse, out loud. It wasn’t like I wanted to keep recalculating our potential wait time based on the rate of customers being served times the number of people ahead of us factoring in the bizarre DMV numbering system that involved six different letter prefixes plus the periodic return to the queue of skipped numbers. It wasn’t that I was enjoying obsessing over each clerk who disappeared on break, thereby lengthening our wait time, or repeatedly pointing out how arbitrary the list of required identity documents was. I just couldn’t stop myself from doing it, even though I was aware of what was happening and aware of how my perseveration was making a stressful situation worse for both of us.
Anxiety or sensory overload can aggravate a wide variety of Asperger’s symptoms.When I’m stressed I find that I’m more clumsy, less open to being touched, more rigid in my thinking, less willing to deviate from routine, more vulnerable to perseverate thinking, more prone to tunnel vision, and more likely to struggle with auditory processing. Symptoms that don’t normally interfere with my functioning can become a big obstacle. I know it’s frustrating for my husband to find himself in a stressful situation and then have to deal with an outbreak of my aspie traits on top of everything else. These are the moments that really test our marriage and I’m still working on finding ways to make them less awful for both of us.
Try to balance the aspie partner’s touch sensitivities with the NT partner’s need for physical affection
Touching, one of the most important and fundamental aspects of an intimate relationship, can be uncomfortable for people with Asperger’s. Although I’ve made a lot of progress in this area, there are still times when I shrink away from being touched.
Certain types of touching in particular–light touches and those that come at unexpected times–are more likely to be uncomfortable. When I’m intensely engaged in an activity, being touched often registers as an unwanted distraction rather than spontaneous affection. I’m also more likely to pull away from touch when I’m stressed or anxious.
Then there are the times when my brain is so busy trying to figure out where a certain type of touch is headed that it’s hard to simply relax and enjoy the moment. Because aspies don’t get many of the nonverbal cues involved in intimate relationships, we rely heavily on the intellectual side of our brains to process how an intimate moment is going to proceed. Yeah, that’s about as romantic as it sounds.
All of this can be very hard on an NT partner who naturally craves physical affection. Although it’s hard to change how I feel about being touched at the “wrong” time, I try to compensate by initiating physical contact that I’m comfortable with at a time that’s good for me.
Author Liane Holliday Willey once took a lot of heat for including holding her husband’s hand five times a day on her “to-do” list. Putting handholding on a to-do list may sound cold and mechanical but that doesn’t mean that the action itself has to be mechanical. Since I’ve begun consciously looking for opportunities to initiate small touches during the day, I find that being physically affectionate has become more of a natural instinct for me and that feels good.
Accept that the NT partner may need to compensate for the aspie partner’s social skills deficits at times.
No matter how hard I work at improving my social skills, I still regularly miss nonverbal cues, resulting in everything from confused looks and awkward pauses to downright hostility from other people.
Here’s a recent example from when The Scientist and I met with a saleswoman about a new apartment:
Saleswoman to The Scientist (who she’d met previously): “It’s good to see you again.”
The Scientist : “It’s good to see you, too.”
Saleswoman to me: “I’m Linda. It’s nice to meet you. Have a seat.”
Me (shaking her offered hand then sitting down): “Thanks, it’s nice to meet you too.”
The Scientist : “Oh, Linda, I don’t think you met my wife.”
I had no idea what was causing the awkward pause until The Scientist jumped in and offered my name to the saleswoman. What threw me was this: The Scientist had already met Linda and didn’t introduce himself. I must have been subconsciously modeling his behavior so I didn’t introduce myself either.
This sounds like a minor hiccup in the conversation but it happens frequently and it unsettles people. As an aspie–and an adult–it can be hard to accept that you need this type of help from your partner. Again, get over it. We all have skills that come naturally and social skills aren’t on the list of natural talents for aspies.
This is an area where practice can help. If the NT partner is willing, you can try roleplaying or talking through how unfamiliar events might play out. However, both partners need to understand that while aspies can work at improving social skills, it’s unlikely that they’ll achieve the sort of social proficiency that comes naturally to NTs.
Having to frequently repair social errors is hard on the NT partner and will probably continue to be an issue throughout your partnership. Acceptance can go a long way in situations where change is slow and inconsistent.
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.
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.
sensory processing, executive function, and learning to recognize discomfort before it leads to a meltdown . . .
Somewhere in my early reading about Asperger’s, I came across this idea: If something is bothering you, you can do something about it.
That seems like deceptively simple advice. If you’re cold, put on a sweater. If you’re hungry, eat something. If the sun is in your eyes, move or close the blinds or put on your sunglasses.
For a typical person, the idea that you can get up and put on a sweater if you’re cold is probably not an earth-shattering revelation. In fact, it’s something they’ve been instinctively doing since childhood. The typical brain receives an incoming message about physical discomfort, finds a solution and swiftly acts on it:
typical body: I’m cold.
typical brain: We’re underdressed. Stop what we’re doing and put on a sweater.
typical body: Good idea!
This is where the typical person gets up from the computer, goes to the closet and takes out a sweater. But for a lot aspies, the body-brain communication is dulled to the point that we appear to not feel pain, cold or other physical sensations in the way that typical people do. You often hear parents of autistic youngsters say that their children will play outside in the winter without wearing a coat or will injure themselves but continue playing like they haven’t noticed.
Based on my experience, I don’t think we necessarily feel pain or cold less. I think our body-brain communication is muted. As a result it takes a lot more sensory input from our bodies to provoke a reaction in our brains.
Here’s how my brain functions:
body: Something’s not right.
brain: Uh-huh . . .
body: No really. I feel strange.
brain: Yeah yeah . . .
body: I think I’m cold.
brain: Shhh, I’m busy.
body: Yep, definitely cold.
brain: Okay, I get it, you’re cold. Hmmm . . . maybe we should do something about it.
body: Look, I have goose bumps.
brain: I’m thinking!
body: Now I’m shivering.
brain: Okay, go get a sweater.
Even when I get to this point, I may put off stopping what I’m doing to get that sweater because in addition to the sensory processing issues of AS, there is the issue of poor executive function.
To understand the complex brain-body interaction problem that aspies struggle with, it might help to break it down into a few parts and look at them separately first.
Those of us with ASD have a tendency to put with stuff until we can’t anymore.
From childhood, we learn that the world is full of annoyances, big and small. Our clothes have scratchy tags and seams. The kids around us never shut up. We suffer through bad smells, weird food, annoying noises, uncomfortable temperatures. The list is endless and it differs for each of us. But I’m betting that one thing we have in common is that we get used to being physically uncomfortable.
Maybe we get used to it not only because we’re more sensitive to physical sensations but because the physical discomfort signal often isn’t strong enough to cause us to act on it. This sounds like a conflicting statement. How can we both more and less sensitive to the physical world?
Often I find myself feeling uncomfortable but I’m so deeply engaged in what I’m doing, that the discomfort hovers at the edges of my consciousness. It exists as low level background noise, not serious enough to make me stop and think about it, but not minor enough that I can completely ignore it. So I put up with it until it becomes truly impossible to ignore.
Of course, by that point it’s long past the time when I should have acted and the minor annoyance has ballooned into serious discomfort.
So what’s going on here? Why can’t an adult with supposedly above average intelligence figure out that she’s cold and the obvious solution is to get up and walk across the room to the closet to get a sweater?
Scientists still aren’t exactly sure how and why aspies process sensory information differently from typical people. The simplest explanation is that we have difficulty prioritizing incoming sensory data. For example, when a typical person walks into a strange place, they quickly and instinctively filter out the unnecessary information from the necessary. In a doctor’s office, they zero in the reception desk. In a coffee shop, their brain immediately sorts out where the ordering line is. In a busy train station, they filter out the distractions to focus on the directional signs pointing them to their platform.
If just reading about those unfamiliar situations raised your anxiety level, you’re not alone. The aspie brain takes one look at the busy train platform gives equal weight to the directional signs, the map on the wall, the crying toddler, the homeless man shaking his cup of coins, the stale underground smell, the roar of the trains, the sound of the bathroom hand dryer, the person brushing up against you, the uneven flooring, and a million other sights, sounds, smells and physical sensations.
Like so many other things, what typical people do instinctively–filter out the sensory noise to identify the relevant inputs–the aspie brain does through a logical process of elimination. Given enough time, I can stand in the busy train station and find the correct directional signs, but it will usually take me longer than it would take most typical people.
So how does this apply to those everyday annoyances that we’re so good at ignoring? Because we seem to receive so much of our environmental data at the same “volume” level, it’s hard for any single piece of information to rise above the rest and get noticed. Typical people instinctively sort those same incoming signals by priority and the “I’m too cold” signal will get mentally red flagged. This red flag message then interrupts the part of the brain that’s engaged in work to say “hey, we’ve got a problem over here.”
The aspie brain doesn’t seem to red flag sensory input until it reaches critical levels that make it physically impossible to ignore. By that point it’s often too late, and a meltdown is imminent.
Unfortunately, the sensory processing issue is only half of the problem. Even when I notice that, yes, I’m too cold, I still tend to ignore that information for as long as possible. Often I’m probably investing more energy in ignoring the annoyance than it would take to get up and remedy the situation.
So it’s not that I’m not uncomfortable. I am. Just not uncomfortable enough to take action.
This is where executive function comes into play. Executive function is an umbrella term that covers things like planning, problem solving, mental flexibility, multi-tasking and initiating and monitoring actions. Poor executive function is why aspies often have trouble switching between tasks, starting and stopping activities and planning ahead. It’s also a big part of why we put up with stuff that could be easily fixed.
For an aspie, the time lag between detecting the annoyance, formulating a plan to deal with it and then taking the required action can be long or even indefinite.
What appears to be a simple problem–this thing is bothering me and I need to do something about it–has very complex neurological roots.
Yeah, I know what you’re thinking. All of this theory stuff is great, but what can I do?
You Can Do Something About That
The first step is being attentive to what your body is telling you. For me, the feeling that something is physically uncomfortable is very specific. It hovers right at the edge of my brain, like an itch that I can’t quite reach. I’ve begun to practice listening for that feeling when I’m engaged in something else.
The second step is consciously prioritizing that feeling as early as possible after you notice it occurring. For example, as I was about halfway through writing this, I started to get the itchy feeling. When I came to the end of a stream of thought I paused and disengaged my mind from writing enough to realize that the sun was shining on my laptop monitor, creating a glare.
The next step is identifying a solution. Is this a problem I can easily fix? How? In the case of the glare, I looked around and realized that there is a shade in the coffee shop window next to me and it has a pull chain that would allow me to lower it.
The final step is, of course, acting on the problem. If the solution is simple, try to act on it right away. It can be hard to stop what you’re doing to take that action, but once you do, you’ll be able to concentrate much better on your activity. I try to use that as an incentive to break away and do what I need to do. Since I pulled the shade down, I’m no longer squinting at my monitor, my face isn’t too warm from the sun and I know I won’t be leaving Starbucks with a headache.
Don’t be surprised if it takes awhile to get the hang of doing something about the little things in life that bug you. At least fifteen minutes passed between the time I started to peripherally sense that something was wrong and the time I lowered the shade.
Retraining our brains is hard work and requires some patience. Rather than feeling bad because a typical person would spend about 15 seconds on a process that took me 15 minutes, I try to focus on the fact that a year ago, I would have just kept right on typing, squinting at the glare on my monitor and feeling miserable.