sensory processing, executive function, and learning to recognize discomfort before it leads to a meltdown . . .
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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.
Musings of an Aspie 
Great post! As I was reading this, I started thinking about articles I have read suggesting that people who work at a computer get up every hour and stretch and look around a bit, and that made me think that I could combine what you are saying with that idea and make it part of my routine to periodically check out my environment and my body to see if I am comfortable or need to change anything. Eventually it might become more instinctive, but if not, the scheduled checks could be continued. (It might help my son not always have to race to the bathroom at the last second, too!)
Thank you! Taking regular breaks is a good, practical idea. I think I’d need a timer or some sort of intrusive reminder to force me to do it, but perhaps I’ll give it a try. Heck, it might help keep me from racing to the bathroom at the last minute! 🙂
Thank you for writing this. I’ve never been able to explain why I’m often unwilling to stop doing what I’m doing to go fix something that’s bothering me. Even if I recognise that I’m thirsty, or I’m cold, or whatever, I may just state what I’m feeling (purely because I had thought it my head and felt like opening my mouth) but won’t do anything about it for a long time. Some people misunderstand this and think that I’m expecting them to fix my problems for me, and I can come across as lazy and manipulative or needy. It sucks.
Oh gosh, that sounds like an awful misinterpretation of what you’re experiencing. It’s so frustrating to have that little inkling that something is wrong and then not be able to muster the actions to do something about it. Knowing what’s happening has helped me deal with it a little better, though I still put stuff off for too long most of the time.
*had a thought in my head
I don’t live in a country where cold is ever something I need to worry about (otherwise I’d probably freeze to death), but I have a lot of scars on my feet because I don’t always notice that my shoes are rubbing through the skin on my feet until they’re bleeding. And sometimes even once I realise it, executive function issues mean I don’t always put a Band-Aid or whatever on to prevent further rubbing.
By the way, I think your ‘meltdowns’ tag is misspelled (sorry! I don’t mean to be rude, I just wasn’t sure if you noticed it).
That sounds like exactly the kind of problem I’m talking about and actually a very painful form of it. 😦
And yes, I did spell the tag wrong. Oops. Thank you for pointing it out so I can fix it. Not rude at all! I appreciate it.
Reminds me of earlier this week, when I managed to go half a day at work with a stomach bug because the report I was writing was just so darn interesting.
To observers, I went from fine to sick as a dog like flipping a lightswitch. In reality, I’d started feeling off before I even got to work, but it just hadn’t hit my impossible-to-ignore threshold.
As a kid, combine that with severe brittle asthma, and you got a recipe for dangerous flares, since most teachers didn’t get that if it was bad enough for me to say I needed my inhaler, I was already in respiratory distress and probably only a few minutes away from cyanosis and/or full respiratory failure – this is why my mother had to keep me home whenever I was at a higher risk of a flareup. They didn’t know how to tell I needed inhaler before I did, but she could tell and keep me from getting to that point.
Wow, that sounds so scary! It’s good that your mom learned to read your distress signs and recognized the need to keep you home.
As a kid, I kept ending up in emergency rooms because I’d “suddenly” come down with severe, seemingly inexplicable illnesses. Looking back, they were probably coming on for days but I just didn’t notice until I was past the point of being able to ignore it (i.e. passing out, high fever, etc.)
Yeah, that happened to me a lot, too. Also, at social functions, fine-fine-fine-fine-fine-fine-passed-out-on-the-floor. Or in restaurants. Or at family gatherings. Or under the stadium at sporting events. Or… etc. It became a running joke that I could sleep anywhere (standing in the corner for a timeout, in a cupboard during hide-and-seek, under my desk during recess, face-first in my supper, etc.).
One of the worst shutdowns I had was after a move when I was seven – my parents thought I’d tolerated the two days in the car and starting at a new school, etc, remarkably well… until I slept 30 hours straight, and they couldn’t wake me up. I remember being vaguely aware of conversations and stuff in the room as I slept but I just couldn’t force myself to respond to anything. My parents said later that if I’d slept any longer, they were going to take me to the ER, and the only reason they hadn’t was because I have medical relatives who couldn’t find anything physically wrong with me.
Not sure if they figured out that it was a shutdown or what, but they did let me have the rest of the week to adjust to my new place before starting at school again.
I once passed out while waiting to get on the train ride at Disney World. No surprise there. DW is one of my favorite places, but even as an adult I need to go back to the hotel and nap by midafternoon. I wonder what our parents attributed all these freak illnesses to? Maybe just a delicate constitution?
I know this is a really delayed reply, but it fits in really well with something I was thinking about this morning. I think maybe a big reason why autistic kids seem to be sick so often is because they don’t say anything at the early stages, and nothing happens until it gets really bad, so it does look like comes out of nowhere. It could even be connected to the “gut bacteria” idea that I’ve seen going around lately, in which an imbalance of gut bacteria seems to be the latest “cause” of autism. I don’t know if it works this way or not, but what if something that causes an imbalance is something that would cause an NT kid to say something early on, but an autistic kid won’t notice or articulate it until later, when the problem is bigger and the imbalance may be more or less permanent. If that were the case, no wonder things would improve when the imbalance is corrected, if it’s been causing discomfort. Especially if it’s been going on for a long time. I wonder, too, if this could be one reason why it seems like parents of non-verbal autistic kids come in with a list of medical issues that are another reason why we’re “not like their kids”. Imagine having not only sensory and executive function issues to deal with in figuring out that there’s something wrong and what it is, but trying to communicate it too.
I mean, there are a lot of other problems I can think of with this study, like correlation not being causation and the fact that plenty of NT people have gastro-intestinal problems and plenty of autistic people don’t. And I don’t know what the mix of pseudoscience and real science is with this. But given that other autistic traits are often misunderstood because NTs are looking in the wrong place for the root cause, this could be another one.
I definitely think that a combination of not realizing something is wrong (interoception issues) until much later and not saying anything until it’s quite severely uncomfortable can be contributors to health problems in autistic people. That’s definitely been the case for me at times. I don’t give a lot of credence to the whole gut bacteria thing – but like the general population, some autistic people do have food allergies and intolerances and might suffer from that discomfort more than others until they realize that it’s something that can be treated and managed.
While re-reading some of your blog posts, this one stood out… Especially the “conversation” between body and brain, and the similarity of structure with my deviation on my shut-downs.
I think I have a theory of what actually happened and made my brain shut down my auditory and motor systems… I was simply not noticing the pressure the commotion was handing to my sensory systems until it was too late, and my brain had to intervene. Instead of pain/cold/…, this was a case of too much auditory pressure, and my conscious mind wasn’t paying attention to the distress the rest of my brain was in.
This also explains why there is such a difference in the predictability of my shut-downs vs. explosions/implosions. The latter two need a serious build-up of emotions and stress, which I’m pretty good at noticing before I reach that threshold. I do still consider a shutdown to be a different type of meltdown, but it’s clearly separate from the others.
For those interested, here’s the link to my experience with these shut-downs: http://fav.me/d6xvyey
(Yes, I know I posted that link on another blog post here already)
Yes, noticing things too late can be a big problem and get us into deep trouble at times. Now that you mention it, I rarely notice that I’m in shutdown until someone else points it out, whereas meltdowns I can see coming a mile away.
I don’t know whether I’m autistic (I have a number of the traits, but haven’t been evaluated/diagnosed yet), but I can definitely relate to a lot of your posts. I started reading some of your older posts to see whether you’d written about identifying stress/discomfort before it becomes a problem. I have a hard time recognizing when I’m stressed; I usually end up going from “fine” to panic attacks and getting physically ill because I’m so overwhelmed. I’ve had people tell me to just take a minute to check in with myself and see whether I feel uncomfortable or stressed, but I’m not even sure how to tell! I guess I’m bad at identifying discomfort or stress unless it’s impossible to ignore. I’d love to hear any strategies others have!
I might be a bit late to the party here, but I am wondering if this brain-body separation thing can be abstracted to an external thing. I tend to look at a thing that is happening, say a pot boiling over for instance, and go into a freeze. I don’t know how to react until the issue gets too overblown and now it’s full on panic mode. At this point my solutions are not working, like instead of turning the heat down and moving the pot off the burner, actually just grabbing a nearby towel and trying to sop up the water before it hits the floor.
I have issues generating logical reactions to events happening that actually turn out being the wrong reactions entirely and I don’t know how to fix it.