Tag Archives: self-awareness

Sensory Processing

Interoception: How Do I Feel?

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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.

interoception

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.

Health

Shape Shifting

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Recently The Scientist said, “I’m concerned that your world is shrinking.”

I asked him why. He elaborated. I didn’t say anything substantial in response because, as so often happens, I didn’t have a coherent answer at the time.

But that statement has been roaming my brain for the past few days, measuring my current state of affairs against times past.

Shrinking implies something that was once larger or more abundant. Two years ago I was finishing up my long-put-off university degree. I was spending three days a week on campus, surrounded by people, interacting all day, commuting an hour each way, expanding my intellectual horizons. The Scientist and I also had frequent social engagements because we lived in an area where we knew quite a few people.

Since then? I’m back to working at home. My days have a predictable rhythm: wake up, workout, write, work, eat a few times in between. Some days the car never leaves the garage. The geography of my social interaction is smaller than it was when I was going to school. Or years before that, when I was working at a job that required interacting face-to-face with people all day long or when my daughter was in school and I had to shuttle her to events and such.

There was a time in between all those other times–a time when you could say that my world shrunk very small–and I found the kind of internal quiet that I hadn’t known existed. The Scientist and I moved far away from our roots, to the desert, to a place so remote that we regularly encountered coyotes on our evening walks and the nearest gas station–the nearest anything–was a fifteen minute drive.

In that place, I found a deep internal sense of quiet. I let go of a lot of old hurts. I started to understand myself.

Of course, life gradually crept in again. We formed ties. We put down new roots. I decided to go back to school. Gradually I began to feel a creeping sense of unease. The quiet I’d found receded as I found myself having to back out of that peaceful place I’d created for myself. One by one, I backed out of the rooms in my mind, turned off the lights and closed the doors, shutting away the parts of myself that I instinctively sensed wouldn’t survive being exposed to the outside world.

Until something inside me rebelled and refused to close another door. The place I’d found–it was hard to leave and harder to close away without knowing if I’d be able to find my way back. In retrospect, that internal rebellion–the tension that arose between the security of the peaceful place I’d found and the stimulation of the outside world I was being drawn back into–was the first step toward discovering that I’m autistic.

I didn’t know that then. All I knew was that something had to give.

The tension grew in a way it hadn’t before. I became acutely aware of the two very different places I lived in. There was this new place, which existed mostly when I was alone, that felt very natural. It was secure and comfortable and, most of all, quiet. I hadn’t been in a place that internally quiet in a very long time, certainly not since I’d reached an age that had two digits in it instead of one.

Then there was the other place, the one I’d taken for granted as being life, the one where I kept a stranglehold on everything to keep it from flying apart. It was a place that pushed me to grow and expand myself, but one where I lacked the natural ease I felt in the new place I’d discovered.

I tried shifting between the two places but that turns out to be impossible for me. In typical aspie fashion, I have no idea where the middle ground is. I can be here or there, but commuting between them isn’t something I can do on a daily basis. When I do shift–like I did after my recent trip, moving from the intense interaction of being with people 24/7 for 10 days to the quiet of home–it can take me weeks to rediscover my equilibrium.

That got me thinking about where the source of that equilibrium lies. I think it lies in my true self, the one that is more fragile than I’d like to admit and that I can close off inside a nice safe cocoon when I need to, safe from harm but inaccessible.

It’s scary to realize that I can intentionally dissociate myself, scarier even to think that for years I’d been doing exactly that without consciously being aware of it. At some point–probably very early on–closing off parts of myself became my main defense mechanism, a way to survive in a world I find hard to navigate and harder to understand.

That can’t be healthy. I don’t enjoy it. I wish my quiet self was strong enough to go into the world without having to close all those doors. Perhaps the place I’m in now, this revival of my quiet period as I’m starting to think of it, is my way of nurturing and fortifying my quiet self for whatever comes next.

On my trip, I felt like I had to close off myself less than I did in the past. There are some doors I can leave ajar, some lights that I can dim instead of extinguishing. Thanks to understanding my autistic brain better, I have coping mechanisms available to me now that I didn’t before.

It may be a few years before life shifts again and takes me into a new phase as it inevitably does. For now, I’m planning to make the most of this quiet period, writing and thinking and being with myself. I think a certain amount of withdrawal from the world–a redirection of my resources–is necessary for me to expand myself internally.

Is my world shrinking?

Days later I let The Scientist know that I’d found my answer. What may appear from the outside to be smaller is on the whole simply changing shape. Again.

Diagnosis

Adult ASD: Moving Forward After Diagnosis

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This is part 12 in the “I Think I Might Be Autistic” series.

The decision to pursue a diagnosis was difficult to make. There were times when I doubted my choice. Was it necessary to have a professional diagnosis? Would it make a difference?

Having gone through the process, the answer to both questions is yes. I have a strong need for closure. I don’t deal well with gray areas and uncertainty. That piece of paper that says, “299.80 Asperger’s Syndrome” closes off an avenue of doubt for me.

It also allows me to say this: if you think you’re an aspie or autistic–if you’ve done the research and talked to other people on the spectrum and see yourself in them, if you’ve identified a long list of autistic traits in yourself and come to the conclusion that ASD describes your particular set of neurological differences–then you are very likely correct. With or without an official-looking paper diagnosis, I think we are our own best judges of our neurology.

So, yes, getting diagnosed was worth the time, effort and expense for me. Yes, I’m fortunate to be in a position to have access to the resources I needed to pursue it. Yes, I also believe that self-diagnosis can be valid.

One of the reasons I’ve written in detail about the process is because I know that not everyone can afford or has access to a diagnosis. Not everyone is ready to pursue getting diagnosed. Not everyone has the executive function or the emotional resources to run the gauntlet of medical and mental health providers. Not everyone needs or wants a formal diagnosis.

But I think everyone who has bothered to read 11,000+ words of this series probably shares my interest in self-discovery. We know that we’re different and we want to know why and how and what that means. I spent less than 8 hours with the people who diagnosed me, but I’ve spent hundreds and hundreds of hours researching and writing about being autistic. That, ultimately, is what matters most to me.

My diagnosis, though it allowed me to put one set of questions to bed, has raised plenty of others.

  • Are there things in my life that I want to change?

  • Should I go for therapy?

  • Who should I tell?

  • How?

  • What does it mean to be Autistic?

These aren’t questions I can answer conclusively, even today.

Time to Change?

Once the newness of the diagnosis began to wear off, I was faced with the question of what to do with this new knowledge. I have a 10-page report from the neuropsychologist listing my cognitive strengths and weaknesses. I’ve become more familiar with and conscious of the areas where I struggle.

I’ve been told, not for the first time, that therapy would be beneficial. It’s an idea that I keep kicking to the back of the line, intent instead on rigorous self-examination. Like everything else I write about here, that’s my personal choice and not necessarily one that’s going to be right for anyone else. I’m not even sure if it’s entirely right for me.

Slowly, I’ve been working at making specific changes. I’ve written about being more flexible, allowing myself to stim more, trying to reduce my insomnia and nightmares, learning to translate from aspie to NT and back, and exploring my emotions.

I’ve also written about the things I’ve decided need accepting rather than changing: my lack of empathy, my anxiety, my tactile defensiveness, my love of being alone. My litmus test for change vs. acceptance is simple: is the cost of changing this thing higher than the benefit I’ll gain from the change?

Some changes require little more than mindfulness or occasional reminders; other changes require me to move out of my comfort zone and face some hard truths. The outcome–or at least the goal–is that I struggle less with some aspect of my life. Those are the good changes, the ones I’m eager to make.

Other changes feel pointless to me. These are often the changes that would make other people more comfortable by making me seem less odd. With all of the things I could be working on, I don’t see the point of investing my limited energy in those types of changes.

In fact, since getting diagnosed, I’ve become more echolalic, more stimmy, less conscious of censoring myself. I’ve become gentler and more compassionate with myself. I push myself less; cut myself slack where I wouldn’t have before. Not because I see myself as disabled, but because I see myself as a person in need of care.

I never really gave much thought to self-care before. I often demanded a level of performance and perfection from myself that I wouldn’t have expected from another person. I was so busy pushing myself to be better, to get things right, that I often neglected to be kind to myself.<

Perhaps that’s the biggest change I’ve made so far: I’ve resolved to be kind to myself.

Obviously, these are very personal decisions. The constellation of things that I choose to work on changing is unique to me. It continues to shift and grow. There are days when I think, “screw this, why should I change anything?” There are days when I think it would be nice to be “normal” for a day, to not have to struggle so much with simple things.

Then there are days when being autistic recedes into the background, not because I’m less autistic, but because I’m more comfortably autistic. Little by little, I feel myself healing old wounds, integrating the shiny new realizations, and becoming more myself.

That’s the best change of all.

Up Next: Disclosure

Voices on the Spectrum

Autistics Speaking Day 2012: This Is My Normal

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This is my contribution to Autistics Speaking Day 2012. Because this is a day centered around autistics speaking for and about themselves, I’d like to also link to a short post  I wrote a month ago that contains links to many other blogs and websites by autistic people: See. Understand. Experience. Autism. You can also find many more contributions at the Autistics Speaking Day website.

~~~~~

I’ve been autistic all my life, but I’ve only been aware of my autism for nine months.

That’s nearly four decades of knowing I was different, nine months of knowing why.

*

As a kid, I didn’t realize I was different until people told me.

Sometimes other kids told me in words: nerd, tomboy, babytalk, weirdo.

Sometimes they told me in actions: laughter, rejection, intimidation, bullying.

Sometimes their parents told me for them: We know you’re just using Leah because you don’t have any other friends. She’s not allowed to have you over until you learn how to be a true friend.

Sometimes my own parents told me: quit bellyaching, you need to make more friends, all that crying isn’t normal, it’s time to grow up and be like other girls.

*

I got the message: you’re broken; fix yourself.

I had a lot of determination but few resources.

Eventually, I gave up trying to fit in and embraced my weirdness. I found friends who were equally weird.

Being defiantly different became my thing; sometimes it still is.

*

But much of the time now, I forget that I’m different. When I’m alone, I forget. When I’m with the people who love and accept me unconditionally, I forget.

Until someone else reminds me–with a puzzled expression or a sarcastic remark–I forget that my brain functions differently from the other 99% of the human race.

*

I’m not just different on the outside–shy, quiet, awkward, odd.

I’m different on the inside. My wiring is nonstandard.

I’m not broken. I don’t need to be fixed.

What I do need is a little support here and there. Patience, humor, understanding.

Not pity or sympathy.

Not to be made normal.

*

People say things like:

You’d feel better if you got out of the house more.

You’d feel better if you stimmed less.

You’d feel better if you paid more attention to your looks.

To the people who think this is helpful advice I want to say:

No. Those are the things that would make you feel better, make you feel less uncomfortable around me. Doing those things would make me more tolerable to you.

Because until you said that, I felt fine.

*

This is my normal. It’s not like most people’s normal, but it’s the only one I’ve ever known and I’m content with it.

I like myself.

I forget that I’m different until you remind me.

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.

—–

If I’ve linked to you above and you’d like to be listed differently (or not listed), please let me know via twitter (@aspiemusings) or in the comments.

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
Sensory Processing

You Can Do Something About That

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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.

Sensory Processing

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.

Executive Function

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.

Communication

When All You Can Draw is a Blank

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

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

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

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

“What kind of things are there to do?”

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

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

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

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

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

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

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

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

“Anything,” she replied.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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