Work

The Self-Employed Aspie

July 31, 2013 musingsofanaspie 69 Comments

This is the first in a 4-part series on self-employment for people on the autism spectrum.

Part 1: The Self-Employed Aspie

The majority of people with Asperger’s are either unemployed or underemployed. For an adult aspie, this is a scary statistic. It’s easy to hear it and feel like the deck is stacked against you.

In some ways it is. A job interview is heavily weighted in favor of social skills. Employees are generally expected to be team players. Often, getting ahead in the workplace is as much a matter of who you know as what you know. All jobs have rules, both written and unwritten, and employees are expected to follow them.

So much of what happens in a workplace is second nature to neurotypicals and a complete mystery to the average aspie.

Or at least I assume it is. My last workplace was a McDonald’s. I was eighteen.The expectations were low. As long as you didn’t steal from your register or hold the place up at gunpoint they didn’t fire you. I’m not exaggerating. Those were the only two things people were fired for in the year that I worked there.

So if you’re looking for advice about getting or keeping a traditional job–with or without Asperger’s–I can’t help you.

But if you’re curious about being self-employed, I have a lot of experience. I’ve been the owner or co-owner of a business since I was 19. I lucked into the first business–it was something my husband started around the time we got married. It made sense for me to help him out rather than going out and getting a job. Continue reading The Self-Employed Aspie →

Executive Function

What Do I Want?

July 29, 2013 musingsofanaspie 91 Comments

The Scientist has proposed a 30-day experiment. He says I need to practice doing what I want to do. He says, in addition to being good for me, it will help him to get to know me better. We’ve known each other for 28 years, so this feels a little late in the game for getting to know each other better. And yet . . .

What really intrigued me about his proposal is how it might help me get to know myself better. If you’re a long time reader, you might remember that last year I wrote about how much difficulty I have figuring out what I want. I often haphazardly make minor decisions, only to find I’m unhappy with the results. Here’s an example, the one that sparked the idea for the experiment:

I tried out a new recipe for dinner last week–a light summer mix of fresh tomatoes, red onions, squash and fried okra from the farmer’s market. When The Scientist tasted it, he said the flavor was too strong for him but he’d make some pasta to toss the veggies with. Since I was already cooking, I made the pasta, and for some reason I mixed all of the veggies with the pasta instead of setting my half aside. The resulting pasta dish tasted okay, but it wasn’t what I had in mind when I chose the recipe.

After dinner I was feeling gloomy, silently perseverating. As we were sitting down to watch TV, I blurted out, “I have no idea why I ate that. It wasn’t what I wanted.”

The Scientist, surprised by how upset I was, asked why I ate it if I didn’t want it. My answer: “I don’t know.”

A longish discussion ensued. The next day. Because we’re slow to process things. One of the conclusions we came to is that I sometimes do things to please other people at the expense of own preferences. Strangely, this seems to be more of a reflex action than a conscious choice.

So the experiment is this: for 30 days, I’m supposed to do whatever I want. This is alarmingly vague.

What do I want? Decision making–even the simplest decisions–can tie me up in knots. My primary decision-making strategies:

1. What do you want? I’ve noticed that other people often have stronger preferences or are more aware of what they want or like than I am. If what they suggest isn’t objectionable to me, I’ll go along with their choice. Decision making by proxy. Simple. Efficient. And probably one of the main reasons I have so much trouble figuring out my own wants and preferences.

2. I don’t want A. By default I must want B. If someone says “do you want Chinese food or Pizza?” it rarely occurs to me that I actually want a burger.

3. This is too hard. I give up. When there are too many options, I don’t know where to start. I choose the first option that isn’t terrible. These are often the choices I end up feeling most ambivalent about.

4. I want A but it’s too much work. I’ll just settle for B. This is how I made decisions when I’m overloaded. I would love ice cream right now but going out to get it sounds exhausting so I’ll have this peach instead.

5. I want this thing and nothing else. This sounds great. It’s not. What I want is often imaginary. In my head it’s this perfect thing. In reality, it turns out to be a pale shadow of what I anticipated.

6. I want A, but I can tell you want B. If one of us has to be disappointed, I’d rather it be me. This makes me sound like such a martyr. Honestly, it’s an annoying reflex response that I need to cure myself of. Done too often, it breeds resentment.

Writing this out helps me understand better why I often feel ambivalent or unsatisfied with minor decisions. I need new strategies. The Scientist says to try just feeling it. This is hard. I’m used to making decisions based on logic and reasoning.

But . . . 30 days of being with this question of “what do I want?” might change that. We’ll see.

Projects

Stop Signs For Tommy

July 26, 2013 musingsofanaspie 38 Comments

Hi Tommy,

Your mom told me that you like stop signs a lot. When I was your age, I really liked old coins and when I got a little older, I really liked baseball cards and now that I’m grown up, one of the things I like a lot is old buildings that people don’t use anymore. I especially like looking at pictures of old buildings and I spend a lot of time searching online for them.

So when your mom said you like to look for stop sign pictures, I thought it would be fun to ask my friends who read my blog to take some stop sign pictures for you. They asked their friends and a whole bunch of people went out and took photos of stop signs all over the world just for you.

We hope that you like them!

Cynthia

P.S. If you click on the photos, some of them have bigger versions and you’ll be able to see the stop signs better.
P.P.S. Some people took a bunch of photos so I put one here and linked to the others. Go have a look!

Continue reading Stop Signs For Tommy →

Monday Morning Musings

Monday Morning Musings (7/22)

July 22, 2013 musingsofanaspie 21 Comments

Stop Signs

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.”

*headesk*

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.

Trainspottng

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.

Sensory Processing

Lost in Space

July 18, 2013 musingsofanaspie 131 Comments

I think I was born to be in motion. I have difficulty resting when I’m at rest.

If I have to sit in one place long enough, I’ll cycle through dozens of postures without thinking about it. I slouch. I splay. I pin one foot under the other. I pull one knee up, then two, hugging my shins with a hand or arm. I sit on my foot, ankle or calf. I sit crossed legged, even on chairs. I put my elbows on the table, lean my head or chin on my hand, interlace my hands on top of my head. I perch on the edge of my chair, turn sideways, tangle my feet in the legs of nearby furniture.

The variations are endless but they have one thing in common–they orient my body to my surroundings. Without a steady stream of proprioceptive feedback, I start to feel disoriented and disconnected from my body. I feel lost in space. Confused. Physically disorganized..

When I’m at home, sometimes I just go lie on the floor to give my body a break from being upright. Because being upright requires figuring out where to put my hands and arms and legs and feet and often no sooner do I get that all sorted out than that restless feeling starts nudging at my leg or foot or spine and I need to move again.

It’s not that I can’t sit like a proper adult. I often start out sitting with both feet on the ground, arms relaxed at my side. In fact, in new social situations, I make a conscious effort to sit properly. Because I’m not four years old. I’m an adult–often an adult in a situation where I’m expected to look professional–and adults have very specific expectations of other adults in those situations.

Often what I come up with is a tense variation of typical “good sitting posture”:

Then my internal clock starts ticking and one of two things happens. If I’m in a formal setting, my body will grow more and more tense as I work to maintain a polite, socially acceptable posture. Then I’ll start covertly stimming, rubbing something between my fingers or twisting my hand in my pantsleg, something to counterbalance the tension that’s building up as I force myself to be still.

If I’m in comfortable or casual surroundings, it doesn’t take more than five minutes for me to start shifting around, searching for a more comfortable position. On an airplane, for example, I’ll start out sitting with my feet on the floor, book in my hand, arms close to my sides–typical polite seatmate posture. Soon, I’ll have one leg splayed out along the aisle or tucked under my opposite thigh. When that stops working, I’ll slouch and pin both knees against the seat in front of me or turn sideways and pull my legs up to my chest or fold one leg across the knee of the other, wedging a foot against the seat in front of me.

The fact that I’ll start stimming when I can’t freely change my posture often probably indicates that the positions I use to feel comfortable are in fact themselves a form of stimming.

Reset, Relax, Repeat

My body has a time limit on any one position. Even when I’m trying to fall asleep, if I don’t nod off right away, I need to keep changing position every ten minutes or so.

When I’m still, I have a gradual build-up of . . . I don’t know what. Tension? Discomfort? Disorganization?

I start to feel more and more uncomfortable until I have an uncontrollable urge to rearrange myself. Once I move into a new position, I’ll feel comfortable–momentarily at rest. Then, gradually, the discomfort starts building and soon I have to move again. Sometimes it’s only a matter of shifting back and forth repeatedly between two positions–a trick I used a lot at university to avoid adopting too many odd slouchy postures in class.

As important as the movement–and here’s where I think the particularly autistic aspect of this comes into play–is the position of my limbs. I almost always have one part of my body pinned, pressed, squeezed or wedged against or under something–either another body part or a piece of furniture. I think this deliberate pressure creates feedback that grounds me physically. It reminds me of where my body is in space and makes me feel safe in a way I can’t describe with words.

Physically, pressure equals organization.

Perhaps it’s like swaddling a baby. Mothers have been snugly wrapping up fussy infants for centuries. There is some science to back up the practice, suggesting that swaddling calms babies by enhancing motor organization and self-regulation. Once babies reach a few months old, swaddling is no longer beneficial or necessary because they have a reduced startle reflex and better-developed motor control.

Maybe there’s something very primitively calming about the kind of pressure I’m constantly seeking–a sort of localized form of swaddling.

Or perhaps it’s simply about feedback. Given my poor sense of interoception and my strong drive for proprioceptive sensory input, it’s not surprising that I need to intentionally create a steady stream of input to remind me that I physically exist.

Monday Morning Musings

Monday Morning Musings (7/15)

July 15, 2013 musingsofanaspie 48 Comments

Got Stop Signs?

In the comments on my infodumping post last week, a mom mentioned that her son’s special interest is stop signs. He’s 6 and he loves everything stop sign related. His teachers think this is a problem and try to discourage his interest. But his mom, who sounds like an awesome person, encourages him to do stop sign activities at home, both for fun and as a way to learn new things. That got me thinking that we could potentially make a little boy happy and show him that there are lots of adults who think that having a special interest isn’t weird or something to feel bad about.

So how about if we celebrate Tommy’s special interest by seeing how many photos of stop signs we can come up with for him? Since he’s already using Google to find photos online, I’d like for us to share photos that we’ve personally taken. The easiest option is to take a photo of a stop sign in your neighborhood or if you’re feeling ambitious you could find some interesting place in your area that has a stop sign. Or maybe you happen to have a vacation photo with a stop sign in it?

I know there are readers all over the world. Hopefully we can get some different designs and languages, but any stop sign you can add to the collection would be great. If you want to write a few sentences about the photo–location, pronunciation for non-English versions, a bit about you or your neighborhood, a fun fact about the location (or the sign in general if you don’t want to reveal your location)–that would be awesome. Just keep it appropriate to a 6-year-old.

You can put your photo in the comments below. You can share it on Twitter (mention me so I see it: @aspiemusings) or my Facebook wall (https://www.facebook.com/MusingsofanAspie). Or you can post it on Tumblr, Instagram or a photo sharing site and get a link to me. I’ll put together all of the photos and notes in a post for Tommy. Let’s put a deadline of the end of the month on this so we all feel motivated and such, executive function being what it is around here (especially mine!)

I’m going to start us off with this photo of a stop sign from a train platform in Korea:

Online Neurodiversity Lecture Series

In spite of its rather odd title, I’ve been enjoying the “No Mind Left Behind” lectures that @quarridors shared a link to ages ago. I’ve watched most of the first day of the scientific track, which I found more interesting than the bits of the “reality” track that I’ve seen. The scientific lectures have the benefit of being very short (no more than 20 minutes each) so the speakers are forced to get the point fast. Many of the lectures focus on autism, but ADHD, OCD, Tourette’s and other atypical neurologies are also covered. A scan of the lecture titles will help you narrow things down to your areas of interest pretty quickly.

Two lectures in particular that I enjoyed were the ESSENCE lecture on very early symptom identification and the lecture on the development of empathy. One thing that struck me in the ESSENCE lecture was the idea that very young children are often diagnosed based on the type of doctor that they see. ASD, ADHD and Tourette’s can look similar in two- and three-year-olds, so a child who gets seen by an ADHD specialist at that age is more likely to get an ADHD diagnosis while a child with similar symptoms who gets seen by an ASD specialist first is more likely to be diagnosed as autistic. The lecturer also said he believes that children younger than 3 with hyperactivity symptoms should first be evaluated for ASD before ADHD is considered.

The lecture on empathy by Chrisopher Gillberg was fascinating because he is the person who coined the term Empathy Quotient and his beliefs about empathy are so different from Simon Baron-Cohen’s (who developed the infamous EQ test). Gillberg takes a very neutral, scientific view, avoiding the sort of emotionally charged language we usually see associated with empathy and autism, which is refreshing.

Surveys

This weekend I brought over a bunch of survey answers from Survey Monkey. Yes, people are still answering the adult autism surveys! There are links to all of the survey posts from the final survey if you want to check out the latest additions.

Communication

Saying No

July 11, 2013 musingsofanaspie 68 Comments

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.

Communication

An Open Invitation to Infodump

July 9, 2013 musingsofanaspie 99 Comments

It’s rare these days that the thread of comments on a post isn’t two or three or five times as long as the post itself. This makes me happy. Happy that so many of you feel comfortable sharing your thoughts here. Happy that each post becomes a jumping off point for discussions that wind in all sorts of interesting directions. Happy that we can learn from each other.

I enjoy reading your comments–and I do read every single one of them. I especially enjoy the longer ones where a subject catches someone’s interest and they go off on an enthusiastic tangent. This happens a lot.

You know what else happens a lot? Apologizing. No sooner does someone finish writing their long detailed informative comment than they’re apologizing for it. A recent exchange with Ischemgeek made me realize how often we apologize for simply talking. I do it in the comments too and this is my blog!

And I’ve lost count of the number of times I’ve started to write a comment on someone else’s blog, then deleted it for fear that it was too long or irrelevant. I bail on comments more often than I finish them. The ones I do leave, I often end up wishing I’d said less or came across sounding more chatty and less. . . . fact-y.

No one likes a smarty-pants right? I learned that lesson early and well.

Does Infodumping Have a Place?

We’re autistic–we have deep knowledge of certain subjects, we’re passionate about our knowledge and we want to share. This should be a good thing, but so often it’s something that we’re made to feel bad about and have been since childhood.

In that exchange I mentioned above, Ischemgeek said:

I like hearing others monologue at me (love learning & reading stuff), but I’m used to having to apologize for it when I do it, yeah. When I was a kid, I’d be told I was being domineering or rude and then made to apologize… which didn’t have the effect of teaching me not to monologue because I’m usually 5-10 minutes in before I realize I’ve been talking a while, it just taught me to apologize when I realize I’ve monologued.

Monologuing or infodumping is part of our nature. I understand why it’s discouraged in children. Monopolizing the conversation is rude. So is talking about a subject the other person isn’t interested in.

If you’re told enough times that talking about what interests you is rude, it’s easy to start thinking that talking itself is rude. Because what would we talk about, if not what interests us? We’re black and white thinkers–we come to conclusions like this as a matter of course, especially when we’re younger.

But like Ischemgeek points out, that doesn’t necessarily teach us not to infodump. It teaches us to reflexively apologize every time we say more than three sentences.

Is that necessary as adults? What if the other person expresses interest in the subject? Like Ischemgeek, I will happily listen to someone infodump on a wide range of subjects. Not only that, I’ll often prolong their monologuing by asking lots of questions. I love learning new things and am fascinated by details. When someone has an expert level of knowledge on a subject, their enthusiasm for the subject is contagious. At least I think it is.

I’ve learned about fascinating subjects I never would have pursued on my own thanks to someone else’s passion for them. Ancient Egypt. Aboriginal camp dogs. Unknown unknowns. Primate social behavior. Poaching in Africa. The epidemiology of cancer in Hispanic populations in the US. Given enough time to think about it, I could fill a page at least with topics of memorable conversations like those.

The Scientist and I are both monologuers at times. We indulge each others’ topics of interest. I know far more than the average person about a whole bunch of subjects thanks to his passionate interest in them and the same is true of him. That’s not to say all or even most of our conversations are one-sided monologues. Simply that we both enjoy learning new things and not every conversation we have has to be a typical back and forth, each person talking for equal amounts of time type of conversation.

Making Our Own Rules

I think, because we’re adults and because we can, we should put a moratorium on apologizing for sharing information that we find interesting. Starting here, in the comments. The asynchronous nature of blog comments makes this a low risk place to infodump. We can each choose to read or skip over comments as we see fit. No one has to read what you wrote (well, except probably me).

If you have something to say that you think is interesting and adds to the conversation, say it. Don’t apologize for being passionate about what interests you or for sharing it.

Sensory Processing

Interoception: How Do I Feel?

July 3, 2013 musingsofanaspie 69 Comments

Let’s talk about interoception. I bet you’re already on the edge of your seat, right?

Okay, okay, first a definition. Interoception describes our sensitivity to sensations that originate in our bodies. Think pain, temperature, itch, sensual touch, sensations from our organs and muscles, hunger, thirst, and breathlessness.

All of these sensations combine to give us a sense of sentience. I’m hungry therefore I am.

Our Body’s Dashboard

Interoceptive feedback is important for keeping our bodies in good working condition. Think of them as the body’s dashboard. Are we low on fuel? Running too hot? Has it been too long since some critical service was performed or is a warning light flashing? Interoceptive sensations provide the feedback necessary for troubleshooting and correcting imbalances in the body.

Emotions often arise from our interoceptive sensations, too. When someone asks how you feel, you probably subconsciously check-in with your body, and realizing that you’re tired, hungry, hot, or achy, you reply, “not too great.” Or conversely, if your interoceptive sensations are in balance, you might report feeling happy or at least content.

Obviously not all emotions are tied to interoception, but it’s hard to be happy when you’re in pain or content when you’re itchy. For many people being hungry or tired is a direct route to being cranky and short-tempered. Those of us who are alexithymic experience this even more strongly, often struggling to identify the difference between emotions and physical sensations. I can’t explain how my body confuses “upset” with “cold,” but sometimes it does. Now I know that if I’m feeling cold when no one else around me is, I need to check in with my emotions. And put on a hoodie.

Engage Interoceptive Dampeners

But what if your interoceptive system is dampened? What if a sensation needs to be in the red zone before it comes up on the dashboard? Well, then you forget to eat or stare in wonder at your bleeding toes or don’t realize you might be in pain until you pass out. Sound familiar?

Many autistic people have dampened or muted interoception. We just don’t seem to notice what’s going on in our bodies until it reaches a level that other people would find intolerable. And often when we do notice it, it goes from “oh that’s happening” to intolerable really darn fast.

As often as I experience this in minor, inconvenient ways, I’m occasionally reminded of how dangerous it can be. Because hindsight is 20/20, I can see in retrospect that I recently had a UTI coming on for days before I picked up on the symptoms. One of the main symptoms is pain and other than a vague crampy feeling, I wasn’t experiencing any. Easy to ignore, so I did.

Then some harder to ignore symptoms started happening and my daughter, who I was visiting at the time, said, “you need to go get this checked now.” Left to my own devices, I probably would have taken a wait-and-see approach which would have been bad. Because a few hours later, shortly after getting my prescriptions filled, I was in intense pain. An hour early, at the walk-in clinic, the doctor asked me if I had any pain and, after thinking about it for a moment, I said, “maybe a little?”

My body had gone from zero to “MAKE IT STOP” in less than hour.

And thanks to my body’s poor interoceptive workings, I was rewarded with a kidney infection because unlike most women who dash off to the doctor at those first signs of a UTI, I wasn’t getting enough data to trigger my internal alarms. It wasn’t until I started having more obvious symptoms that I realized something might be wrong and took to Google to figure out what it could be. By the time I started getting the right antibiotics in my body, a common minor ailment has progressed to a potentially serious illness that I’m just starting to recover from two weeks later.

Unreliable Indicators

One of the purposes of interoception is to drive behavior.

Hungry? Eat.

Tired? Sleep.

Pain? Seek help.

Interoceptive sensations–especially pain–may be unreliable indicators in autistic individuals. Medical professionals often rely on pain and other self-reported symptoms of discomfort to assess the presence or seriousness of an illness. In my case, my interoceptive sensations were saying “meh” but my fever (which I didn’t realize I had) and high bacterial count were saying, “hey, big problem here!”

When you combine muted interoception with poor executive function–which may be further impaired by the stress of illness–you’ve got a recipe for disaster. This is why I need someone else to say, “we’re going to the doctor now.” It’s also why recognizing that autistic people may have unique pain, distress or illness signals is important for medical professionals, caregivers and loved ones. This can potentially lead to misdiagnosis or underdiagnosis.

Our nonstandard brain wiring can mean that we miss common warning signs or have difficulty knowing when to act on distress signals.