It is hard to think about autistic coping without understanding a few fundamental issues most autistic individuals face. These are concepts that reflect the subjective experience of being on the autism spectrum. Understanding them is very important to understanding the behaviors evidenced by people who are on the spectrum.
The Reservoir
The reservoir is my term for the subjective mental (and in some ways physiological) reaction of the human body to stress. Every person has a reservoir for stress. How much stress a person can absorb while keeping their reservoir under control depends on many undetermined factors. However, it is apparent that some people have a low reservoir threshold, quickly reaching their overtopping point. When a person’s reservoir overtops, they often cease to function effectively. To avoid further over-stimulation which leads to constant overtopping, many will direct their attention inward and appear restrained and inhibited if not catatonic. Others will last out violently or simply melt down into a fit. This phenomenon has been called the ‘rule of the last drop’; if a child’s inner cup is already full, the slightest trigger (which on the days when the cup is empty would hardly be noticed by the child) might produce an overload.
Most people go through the average day with their reservoir levels in a normal range, never completely empty or completely full. The reservoir cycles over course of the day, starting relatively empty in the morning and gradually filling up over the course of the day as stressors are presented. The same behaviors that tend to modulate self reported perceptions of stress also modulate the reservoir.
Occurrences during the average person’s day impact the level of the reservoir. A stressful encounter as work increases it. A good workout decreases it. A fight with one’s spouse increases it. A yoga class with deep breathing exercises empties it. Just working your way through a normal day tends to cause the reservoir to fill as you encounter numerous minor and some major stressors. As the day ends, sleep takes over for most people. While the reasons behind the need for sleep are complex and uncertain, sleep seems to have a very strong impact in reducing the level of the reservoir so someone is primed to start the next day refreshed and restored.
In addition, daily habits and practices impact the size and resiliency of the reservoir. Good eating habits will cause the reservoir to expand in size, fill slower, and empty quickly. Quality interpersonal communication and physical touch have a similar effect over time. So do vigorous exercise and pretty much all of the adaptive coping strategies described herein, if practiced regularly.
As the level of one’s reservoir increases, the ability of a person to be happy and relaxed starts to gradually decrease. Typical indicators of stress start to show up in the person: sweating palms, hunched posture, tight muscles, quickness to anger and many other classic signs. However, for most people in most circumstances, the level of the reservoir never reaches a level where overtopping is threatened. They muddle along with the reservoir not too empty and not too full. However, people on the spectrum are constantly flirting with, or fully experiencing, an overtopped reservoir.
The reason for this is that stress impacts them more than normal because of their hypersensitivity to the world and problems with modulating their stress response. They are always subjected to chronic, background stress which keeps their reservoir from ever sinking to a normal level. Their perception of the world is of one filled with threats that the body needs to react to. The events of the day cause the reservoir to fill up more quickly than for a normal person and to reach higher levels. The simple flickering of fluorescent lights or the dripping of a water faucet, unnoticeable to most people, may have the effect of slowly or quickly filling up the reservoir, depending upon the unique characteristics of each person. Due to frequent sleeping difficulties for people with autism, resting at night often does not allow the reservoir to empty to normal levels.
One author summarized this concept of reservoir slightly differently:
The cumulative effect of increasing irritation snowballs over the course of an hour, a day, weeks, months, and years. Each time someone smells that substance he hates or anything similar, it burns new links into the brain specifically in the amygdala, to strengthen the perception of certain harmless aspects of the world as threatening. Neurons that fire together once tend to do so again. As subtle changes accumulate, experience rewires the structure of the brain and the brain becomes better and better at doing worse and worse. The more conditions overwhelm the systems and elicit defense, the more this defensive pattern gets set as the person’s truth and the more recoding needed to free a defensive mind.
A high functioning autistic author describes the reservoir as follows:
It is if there is a reservoir of sorts that each of us has. This reservoir starts off empty, but the things we experience throughout the day fill it up. Any sensory load or other nervous system load will cause the reservoir to take on more fluid. It does not have to be unpleasant – even pleasant kinds of sensory load (like enjoying a movie at the theater) fill up the reservoir. Things like the smell of someone’s perfume, bright lights, constant motion, noise (the more painful or annoying, the worse), all tend to fill up the reservoir.
Being ready to interact is also difficult and causes the level to rise. Also, thinking about what the other person said and deciding on a response real time (as opposed to email) also causes the reservoir to rise quickly. The more difficult the interaction, the more quickly the reservoir rises.
I am stressed most of the time. Fear, anger, and any other powerful emotion make the level in the reservoir rise rapidly. Happy contentedness make the level go down, but positive anticipation, suspense, or excitement, at least for me, cause the level to rise, not to fall. Having things go not according to expectation, or having the routine broken, cause the level to go up. Indulging in my perseverations (like researching a topic about which I am obsessed) reduces the level, even if it involves things that are normally stressful, like interacting with people. When I get time along in a dark, quiet place, I can burn off some of the sensory load and cause the reservoir to become less full. Rocking, flapping, and stimming also help me to lower the level in the reservoir. Our tendencies to isolate ourselves, to routinize our lives, to put things in a specific order, etc... are in part, ways of reducing the level of the reservoir, or keeping it from filling up in the first place. In my case, I do many of these things as the reservoir begins to fill, so it fills much more slowly.
Pressure
Persons on the spectrum are extremely sensitive to pressure. Pressure can take many, many forms. Sensory stimuli are a type of pressure. They represent the world trying to get your attention through your nervous system. Rarely do they go away. They are there often when they should not be, such as when you are trying to concentrate or sleep.
The more important type of pressure is psychosocial. The phone ringing presents auditory pressure from the ring tone but also another type of pressure: the pressure to perform up to a set of expectations. The person on the other end of the phone wants something from you. You may or not be able to do that thing. You may or may not want to. However, they are there, imposing upon you, pressuring you, trying to control you. There is almost nothing many adults on the high functioning side of the spectrum dread more during the day than early morning phone calls. They often don’t answer the phone until after noon. By that time, they feel sufficiently in control of their world in order to deal with the pressure. Control is important. The more control you feel, the more pressure you can handle. They are directly proportional. Low levels of perceived control and high levels of pressure are to be avoided by autistics. They often manage this balance by simply withdrawing from the world.
The expectations of the people around apply pressure in many ways. If you feel pressured to behave in a certain way, this often causes you to react against the pressure subconsciously and behave in exactly the opposite fashion. I think this is why autistic people are horrible at small talk. It is not just that they are bad at it; they are bad at it for a reason. The pressure to perform causes their brains to empty out of anything to say. When, in a conversation, they fail to come up with something to say, the other participant will often look expectant or ask what they are thinking. This is the quickest way to make sure they have absolutely nothing to say. In the pressure of expectation, their brain simply seizes up. This is not comfortable. In intimate or simply interpersonal relationships, this can lead to great frustration on the part of the person who thinks they are being dismissed by the person with autism. This can lead to greater pressure to perform and the downward spiral starts.
Blindspots
Autism is all about having blind spots. Since you have always been on the spectrum, you don’t know what the world is like for people who are not on the spectrum. You don’t know that you are missing social cues, because you have never seen them and no one has pointed them out to you in a way that you can do anything about. You don’t know that other people are bored talking to you, because your obsession (and poor observation skills due to the way your brain processes sensory info) blinds you to the subtle cues that are telling you to change the subject. You don’t know that firm touch is good, because all the touch you have gotten has started with light touch and that has been painful. You can’t fix it if you can’t see it. You can’t use adaptive behaviors, because you are unaware of them; no one has shown you that it works better in the long term than the maladaptive techniques you use. This is challenging because you are not interested in relief in two weeks; you want the world to be okay right now, as you have never learned to think to the long term. Autistic individuals are deprived of the tools to eliminate their own blind spots, which is one of the most difficult problems in autism.
Disproportionality of Response
The responses of persons on the spectrum are very similar in type to the behaviors normal people engage in when responding to stress. The main difference is the disproportionality of the response autistics engage in when compared to normal people. All people self stimulate. Autistics do it more singlemindedly and openly. All people adhere to routines and patterns; autistics often obsess on these things. All people withdraw from stressors at times; autistics may withdraw into catatonia.
An Example From My Life
I am someone who has struggled with many of the issues of being on the autism phenotype my whole life without knowing it until three years ago. I am not clinically diagnosable as being on the spectrum. I am too high functioning and I am not disordered, i.e. autism does not significantly impact my ability to function in the world. However, many of the specific behaviors attributable to autism are present in me. I know that my experiences are very different than that of a low functioning autistic individual. However, I believe that the same underlying mechanisms are at work in me and in profoundly autistic individuals – the difference is the disproportionality of the response.
I had an experience last year that is illustrative of this disproportionality. I purchased a rocker / glider chair, because I know that the movement soothes me and helps me deal with stress. When I got it, I found that it squeaks when it moves. I can’t deal with squeaks. I tried on several occasions to fix the squeak with products around the house. I was unsuccessful. I went out and bought some oil in order to fix it. The morning of the episode started bad because I was having a super bowl party and found out that the high definition TV antenna was having trouble picking up the signal when I moved around the loft. This caused agitation but I finally figured out a solution. A little later, I oiled up the joints of the chair in an attempt to stop the squeak. After 20 minutes of oiling, I tried rocking. It squeaked just as bad as ever. I tried rocking quickly to see if I could work the oil further into the joints to stop the squeaking. No luck. More squeaking. I found myself becoming irate. My heart rate shot through the roof. I found myself starting to think about throwing the chair off the balcony. I cursed and threatened the chair. My fiancee tried to calm me unsuccessfully. Knowing I was going to have to work my way through this, she went home to get ready for the party.
I spent the next three hours in a flurry of action. I was getting ready for the party. I was cleaning out storage items in preparation of getting married. I was doing anything but sitting down and doing nothing knowing that movement normally calms me. When my fiancée returned, she immediately remarked that I still looked highly agitated. I finally realized that I was still in a state of nervous overarousal associated with the squeaking chair. But, it was more than that. It was a reaction to a lack of control. No matter what I did, I couldn’t fix the chair. What was supposed to be a source of relaxation was just another stressor. I could not predict when it would get fixed so I could use the chair as intended. I described it in the moment as a sense of betrayal. I realized that the only way to recover was to go running a few miles in the 20 degree weather. By the time I got back, I was mostly fine. A long hot shower, another of my coping strategies, took care of the rest of the matter.
You may be thinking that what I just described sounds familiar and that this doesn’t mean that I am on the phenotype, that I just got angry. But, remember, autism is just a set of behaviors in a person who is hypersensitive to sensory and psychosocial stress in response to a series of stressors. What happened in me was that a relatively minor sensory stressor, the squeaking of a chair that most people would never have noticed, spiraled up in such a way that I seriously considered throwing a chair off a 7th story balcony, that I was highly agitated three hours later despite an intense bout of motion, and that I required a long run in freezing temperatures in order to normalize. I experienced a disproportionately intense reaction to what most people would consider less than a small annoyance. This is the face of autism. The behaviors of children with severe autism look so weird because of the disproportionality of the reaction to stressors that a parent or adult can’t even perceive. Autistic behaviors are normal human behaviors. However, they are exercised with a level of severity, frequency, and single mindedness that a normal person simply can’t understand.
Autistic Inertia
Even with effective intervention, autistic behaviors are going to change slowly and change will significantly lag intervention. This is largely because one thing autistics hate is change. Even positive change is stressful. If an autistic child uses extreme rigidity and adherence to routine as a way of coping with a stressful world, that child is unlikely to quickly give us that coping strategy even when the world becomes less stressful. The child knows that order feels good. The child may not notice consciously the waning of stress. If the child does notice the waning of stress, the child may stick to routine out of fear the stress will come back. The same holds true with self stimulatory behaviors, aversion to foods because of tactile reasons, and many other behaviors. Probably the behavior that will change the fastest is the melt down. If the reservoir is being managed in a way that keeps its levels less empty, then melt down frequency should decrease and you can take this is evidence that the plan is working.