The Role of Context in Defining Autism
Presented at the Easter Seals Therapeutic Day School in Chicago, IL on March 16, 2006.
Good afternoon. My name is James Williams, I am seventeen years old, and I have autism. I am also homeschooled.
My presentation today is about context. What it is, how it relates to autism, and what we can learn from understanding what context is. I define context as the situation in which a behavior or event is taking place regarding the people involved, the place, the time, and whatever else is going on.
How does understanding context relate to autism?
People rely on analyzing the context in which a behavior took place to see whether or not an autistic child was misbehaving. A behavior acceptable in one context is unacceptable in another context, and no behavior is acceptable everywhere. It’s okay to pick your nose at home—but not when you’re at a dinner party.
To the neurotypical person, this is easily understandable. But to the autistic person, this is highly unpredictable.
Because the autistic person does not understand the difference between his home and public the way others do, he doesn't know why his mother yelled at him. It's also likely his mother didn't know the thought pattern her child was using—the one that told him "it was okay in public since it was okay at home."
When an autistic person is thrust into unpredictability, he almost always tries to find what he perceives are predictable rules—hoping to find a teaspoon of safety in a bottle of danger. He will try to follow those rules no matter what. But since his autism robs him of his ability to know what that teaspoon of safety is, he misunderstands it, and tries to follow it faithfully only to get in trouble.
Context might not even be an issue. The autistic person might not see why the behavior is inappropriate at all, even though he may understand it on a factual basis. This might be because he does not feel offended when he sees others do it, and thus does not understand why it is so wrong. Some autistic people might go further and resist any attempts by his parents or teachers to change.
Most autistic people have been in a situation where they misbehaved, and were then taught a behavior which was the right thing to do in "x" situation. Then "y" situation occurs, and the autistic person thinks he is now able to do what he learned, only to get in trouble again because it was in a different context.
Why does this happen?
I have already pointed out that in social skills, the rules change depending on the situation, often spontaneously, and without warning.
Consider the following social situation. Two adults sit down at a table, drinking tea and talking about their lives. They are not doing anything inappropriate. But then, one adult announces she has to go home. If the other adult continues talking, stopping the person from going home, continuing the discussion would become inappropriate.
Another aspect of social skills that is also difficult for an autistic person to understand is the fact that they change simply because of the person’s identity. My mother has pointed out that social rules differ if you are with a group of men versus a group of women. Part of the context is "who" they are, and this can consist of two things--gender and age, though race and marital status are sometimes an issue as well.
In the park, when I was eight years old, I used to kiss my friends in front of everyone. This seemed logical. Since my mother kissed me in the park—why couldn’t I kiss my friends?
In Willy Wonka and the Chocolate Factory, there's a scene in which Willy Wonka shows the people he's touring a sample of "lickable wallpaper." Then he asks the kids to "lick" the wall. Is this acceptable? Yes. Mr. Wonka said it was okay.
Wait a minute, though. Isn’t this one of many behaviors that autistic kids get in trouble for doing?
These examples illustrate an important point—very few behaviors, in of themselves, are bad. All behaviors are appropriate and inappropriate. It is their context that determines this.
This principle works on a minor scale and on a major scale. In the 007 movie “Die Another Day,” James Bond to a Cuban agent, “I’m looking for a North Korean.”
“Tourist?” the Cuban asks.
“Terrorist,” James Bond replies.
“Well, one man’s terrorist is another man’s freedom fighter.”
What’s the moral of this story? Even terrorism, something considered universally bad among most people in our country, is not universally bad. Rather, it depends on the context of the person who is perceiving that terrorism!
This same rule also applies to autistic symptoms. Behaviors that we call “autistic symptoms” are symptoms because of the context in which they are performed. Very few symptoms of autism are symptoms in of themselves.
"How can that be?" some of you may be thinking. The answer is actually pretty simple. Most symptoms that we consider autistic often have “neurotypical equivalents.” Put a neurotypical person in the right situation—and it’s likely he will become autistic.
Here are some examples.
An autistic person feels uneasy when he's in a social situation. However, as I have witnessed many times, autistic people do not always feel uneasy when they are with other autistic people. Indeed, they find true "best friends" in the autism community.
At the same time, a neurotypical American may feel uneasy when he travels to a foreign country such as Brazil or Ethiopia. But he may not feel that uneasiness if he travels to Canada.
Autistic people often are unwilling to deal with change in their environment, such as a room that was newly painted with a different color.
But a neurotypical man may have trouble getting adjusted to single life after his wife has divorced him. Also, many middle-class neurotypical people who lose their jobs and lose their homes have trouble adjusting to that change as well.
Let's not forget that a large part of American politics is based on the attitude that "the American way of life is non-negotiable." This is a sign of resistance to change, that is, change in the way most people live. But the people who are resisting it are mostly neurotypical, as well as the people proclaiming it. It's also likely a percentage of this audience agrees with that as well.
So why do we call these behaviors symptoms of a neurological disorder if they occur within neurotypical people? The answer is context.
While a neurotypical person resists change, he does not resist it in the same context autistic people do. A neurotypical person feels uneasy socially, but not in the same places where an autistic person feels uneasy socially. But because neurotypical people understand each other when THEY feel uneasy, it's not weird. They don’t even give a second thought that it might be weird. That's why some of them are unable to realize that autistic people are behaving the way THEY did in another situation--since it's okay then.
There’s another another issue here—the issue of scale. The “neurotypical equivalents” I just mentioned above are in far more “extreme” situations compared to the examples associated with autistic individuals.
It’s also true that one of the common features of symptoms of autism is that the behaviors performed in a situation are considered irrational and extreme compared to the context. It is not only considered autistic to feel uneasy in front of other eleven-year-olds at the age of eleven, it is considered irrational. But it is okay to feel uneasy when you are traveling to Brazil because that is a far more "extreme" situation. Interestingly, that uneasiness is not always considered autistic.
However, this is an important point—because to an autistic person, playing with other children is like going to Brazil.
So when neurotypical people do share the same issues with autistic people, the scale of how extreme the situation is far greater.
Why is this important to understand? First, it debunks the argument that a child with autism doesn't have anything wrong with them because EVERYONE is special, EVERYONE is different, and thus, NO ONE is normal.
While this argument might work for a few autistic children, it does not apply to autism in general. It has an important blind spot—it does not acknowledge the scale of the suffering between the autistic child and the neurotypical kids and adults around him, and it forgets that often times, the problems autistic children are not shared by anyone else in his class. If everyone is special and everyone is autistic, then how come no one else has his issues?
When I was in school, I would talk to people about my terror of the fire drill. Most of the time, the response, "Oh, it startles me too." Or I heard, “I understand. The sound is deafening.”
I have also noticed that in neurotypical contexts, behaviors that are often considered “autistic” are mentioned without the mention of autism. The website for the local preschool in my hometown has a whole section about getting children adjusted to the change of preschool.
Symptoms of autism also appear in characters of countless books and TV shows. How many TV shows and books have been written that are geared toward elementary, junior high and high school students about the difficulties of school? Quite a few, in fact.
And this is not just in recent fiction. Even old classics discuss these issues. Read the seventh chapter, “Amy’s Valley of Humiliation,” in Little Women, by Louisa May Alcott. In this chapter, Amy March describes the attitude of her classmates in her school. As Alcott writes:
I owe at least a dozen pickled limes, and I can't pay them, you know, till I have money, for Marmee forbade my having anything charged at the shop.
Meg asked her sister why she needed limes. “Tell me all about it. Are limes the fashion now? It used to be pricking bits of rubber to make balls.” And Meg tried to keep her countenance, Amy looked so grave and important.
Why, you see, the girls are always buying them, and unless you want to be thought mean, you must do it too. It's nothing but limes now, for everyone is sucking them in their desks in school time, and trading them off for pencils, bead rings, paper dolls, or something else, at recess. If one girl likes another, she gives her a lime. If she's mad with her, she eats one before her face, and doesn't offer even a suck. They treat by turns, and I've had ever so many but haven't returned them, and I ought for they are debts of honor, you know.
Those words were written in 1869, over 100 years ago. But how different is that from the mentality of children today? There are many modern equivalents to story’s like Amy’s. As is just one example in thousands, an autistic child learns that in order to be cool one must wear Nike shoes. He begs his parents to buy him those shoes, but when he gets them, he learns that now it is popular to have Air Jordans. Like in the book, fashions are short-lived. It’s now limes—but it used to be rubber.
So when I see examples like these in popular culture, and I see symptoms of autism appear in these places where autism is not considered, I think—if fire drills are so startling, why do we make alarms that are so loud? If preschool is so terrible, why do we have preschool? If school in itself is so difficult to manage, then why do we force children to attend school? I would doubt it was because the firemen who made the rule requiring fire drills were deaf. If children are relentlessly teased for issues like limes or, in our day, Nikes or Air Jordan shoes, why do teachers force children to work together in groups as part of the curriculum? I would doubt it was because the legislators who said children had to go to school had forgotten was it was like to go to school themselves.
The answer is simple--because while it is bad for a neurotypical person, it is much worse for an autistic person, or an autistic person lacks the ability to deal with those issues. And this is no exaggeration. After all, if fire drills are so terrifying for everyone else--why is it that the autistic person is the only one who shivers in his shoes and openly shows his terror? If changing your clothes in the gym locker rooms is so difficult because everyone gets teased by other kids about their body--why is it that the autistic person is the only one who complained about getting teased? If school is so bad, why is the autistic person the only one in the classroom falling apart?
Thus, the idea that somehow no one is normal because the issues that affect autistic people also affect neurotypical people is false, because it ignores the dimension of scale.
But there is another issue that is also being ignored. It’s not just the scale that separates autism and normalcy. It’s the context of why the autistic person misbehaved.
Why is this important?
When you want to solve a problem with an autistic person, or change a behavior, you should try to know the motivation behind an autistic person’s behavior. Deniers of autism like to point out that autism is nonexistent since the behavior of autism is no different from a spoiled brat—and thus, autistic people are just spoiled. Those deniers are right in one sense—the autistic person does often behave like a spoiled brat. However, this does not disprove their autism. There’s still a difference between a spoiled brat and an autistic child. The difference is not in the behavior, but the motivation behind their behavior—in other words, the context of why they are behaving that way. That’s what the denier fails to understand.
Failure to understand a motivation can be understood. It is much easier to see how a person behaves and dismiss their problems on their behavior, than to try to find out their motivations unless they can tell you. My grandfather once told me, “I can see your actions, but not your inner motivations.” But, as I have said, very few actions are done without an inner motivation, no matter how strange that motivation is.
If you want to know the proper way to solve a problem, finding out why the autistic person did what he did to create the problem is very difficult, but it is also can be very useful to know. If a person doesn't understand why what he did was wrong, or he is trying to get out of a painful situation, that's not rebellion. When a teacher knows a reason like that, he or she can find a solution to the problem that is far more suited to solving the problem.
"Autism" is also a context in itself. When you look for a motivation, remember that in the context of autism, the conventional wisdom you learned about misbehaving might be turned on its head. And since a behavior is almost always performed for a different reason in the context of autism, a different solution should be implemented. We need to think in terms of “it’s rebellion in the context of normalcy, but not necessarily in the context of autism.”
Consider the following. A child who slaps you may be rebelling in the context of normalcy, but in the context of autism may not be rebelling. Many autistic children have slapped other people in anger or because they were set up by bullies to do so.
So now, I'm going to give you a behavior that would be expected from a rebel, and then I’ll tell you why the child on the spectrum ACTUALLY misbehaved. This is a story I received from a girl my age whom I interviewed when I was at a four-day festival with my uncle in Britt, Iowa. She had a diagnosis of bipolar, as well as anxiety disorder. She also took Prozac, and claimed that every night she could stay up "until her Prozac wore off."
This festival was known as the National Hobo Convention, where, every year, a group of hoboes, tramps, bums, and dropouts come together to celebrate. It’s a counterculture festival, similar to the hippie gatherings of the 1960s. My uncle has published a book about their stories and is well-known in that community.
At this festival, no one is known by their real name. Rather, you’re given a name by one of the hobo elders. I was called the Pied Piper. The bipolar girl was called Crash, and she got her name due to her appalling record of car crashes. She lived with her family in a trailer park in rural Minnesota.
The way Crash behaved was similar to that of an autistic person, as well as her life experiences. She talked about her need to "space out" from other people. She talked about how loud noises would often bother her.
Crash explained how she was starting her senior year in high school in the fall. But when she was in school, she would freely say to her teachers in school, "I'm done with this class. Screw you, I'm leaving!" And that's exactly what she would do. Often she would do that more than once in a day, and walk out fifteen minutes before every class ended.
Crash was also an honor-roll student at that high school.
But why would she say that?
The answer was quite simple: the stress of a single high school class was just "too much" for her. It was too loud, and she needed time to "process" what had happened to her. She had to space out and be alone, because otherwise she would fall apart. She also talked about how, all of her life, she had a need to "get away" from people at times, even people she liked to be with, just because she needed that time by herself and was going to get it no matter what.
She also told me that since she was a honor roll student, she was given the permission to leave class whenever she wanted, and she had had this need to leave class since she was in junior high. Her social worker, whom she had known for a long time, had been her advocate, and would always make sure that she had the ability to leave a class whenever she had to, for it clearly was not affecting her grades.
This girl also would become violent at times. She attacked her principal once--because she was so frustrated. She also, at church, once took her hands and started to strangle members of the congregation. I asked her why she would do that. Crash explained that she was just tired of being with these people and they were not allowing her to leave. She knew, however, that if she did that, she would be given permission to leave.
What this teaches us is that there is almost always a logical reason for why a person on the autism spectrum does something, even when they turn violent. This also suggests that maybe even neurotypical people who are rebellious have reasons for why THEY rebel.
During the festival, she did spend lots of times by herself spacing out, and I saw her alone and did not talk to her during those times. At the same time, I intimidated her younger sister--and after a few minutes of talking to her, she resorted to cocooning behind a table. Yet she wasn’t diagnosed with anything.
Very few behaviors are done without a reason, or a motive. And it is that reason that determines whether or not we are a delinquent or a honorable person--not the behavior itself. Don’t forget that in our courts, there are "three" degrees of murder, even though the murder is the same. And what determines your degree of murder? The reason why you did it, and whether or not it was premeditated.
We need to think of a behavior as having two parts: the behavior itself, and the motive. And we cannot ignore anger when it is visible, as is the case with Crash.
I have now discussed what context is, and how it applies to behaviors. However, behaviors is not the only place context appears. Context also applies to rules as well.
In almost every situation, whether you are in a primitive tribe, a friend's house, or just with two other people, you must follow a set of rules. As I have already pointed out, those rules differ depending on the situation, but there are still rules that exist nonetheless.
Throughout my life, I have noticed that when it comes to rules, there are two theories to rule-following I have seen toward social skills, and other events. I'm going to talk about how these theories relate to autism.
The first belief is the theory of rules. The second is the theory of logic.
The theory of logic can concede to the theory of rules. But not vice-versa.
The theory of rules states the following: A rule is a rule, and must be followed, period. No exceptions.
The theory of logic states the following: All rules were formed in the context of right and wrong, and following a rule must always be applied in a proper context. If the context is such that the rule is not necessary, it is acceptable to break it in that context.
Most people believe in a combination between those theories. Often, some people are adamant about some rules but will allow for exceptions in other rules. And one person might allow more exceptions to a rule than another person.
Even among autistic people, there are differences in belief. But most autistic people fall into four groups when it comes to rule-following. Some autistic people will try to be as adamant as possible, even too adamant, about rule following. This is because they are looking for structure, and they are relying on the rules they made up to provide structure in a confusing world.
There is a second group of autistic people that do not understand certain rules when they learn them, and thus do not follow them. These people do not see why they have to follow them. Thus, they're looking for any way possible to not follow them.
And then there is a third group--a group of autistic people who are hurt by other people who enforce rules. The rules say that the autistic child cannot be told in advance that a fire drill is coming—and the autistic child is perpetually terrified because his ears are sensitive to that sound. These people try not to follow those rules—but their motivation is to avoid pain, not because they cannot understand the rule. This is not autistic. Most people try to avoid a painful situation if they are able to.
And then, there is a fourth group of autistic people who are in the middle. They are hurt by some rules, believe others are logical, and believe other rules are illogical.
Remember, almost every society or social situation has rules. Autistic people who resist following rules are not resisting rules, but a specific set of rules.
The theory of rules and the theory of logic have their benefits and drawbacks. Believers in rules cannot be taken advantage of the way believers in logic can. A believer in logic has the problem of being taken advantage of by a person who will distort the truth to get the logic-follower to give them their way. But believers in logic have the ability to easily compromise if a rule needs to be bent, especially if a child's safety is at stake, or to help an autistic child.
Of course, if safety is a concern, many rule-followers will make exceptions as well. But believers in rule-following have the power to be corrupted by those rules. They can miss the point because they go too far in following a rule, when they should be realizing that they are doing more harm than good. Many autistic people have suffered at the hands of teachers and professionals who were trying to follow the rules, when they could have been benefited if the rules had been harmlessly bent.
In the Harry Potter books, there are characters who believe in rule-following, such as Professor McGonagall, and there are logic-followers, such as Professor Dumbledore. Harry Potter, in order to be the hero, must break the "rulebook" yet since he does a heroic act, Dumbeldore rewards this, even though Dumbeldore might have told Harry not to break the rules he was breaking, and McGonagall might have gotten him in trouble in the process. Yet after Harry saves the day and becomes a hero, all is forgiven. It is logical to reward a person if they saved the school, even if a few rules were broken. And almost always, Dumbledore prevails.
In my opinion, logic should prevail if there are no terrible repercussions that arise when a rule is broken or bent, and the autistic person would benefit if the rule was bent. Logic should obviously prevail if a negative repercussion arises when the rule is followed. However, rules prevail if you have a child who is out-of-control and who cannot tell you WHY he did what he did. One of my greatest assets is my language and my knowledge about myself—whenever I do something wrong, I always explain to someone why I did it and sometimes I then analyze every aspect of the situation. But not everyone can do that.
Autism conferences, if they are big enough, have child care for parents who are attending. Those parents can drop their kids off at the center and then attend the conference. In 2004 my mother and I were asked to arrange the daycare facilities at a conference. Later, in 2005, I attended an autism conference and asked to observe the daycare. Fifteen minutes after I entered the center, I was put to work helping the staff. At both centers, there were issues that occurred among the autistic individuals, and I got to see how each staff member dealt with specific situations. I’m now going to tell you what I saw at each center.
I will not tell you anything about those daycares except call them 1 and 2.
At Daycare 1, there was one large room. It was a very noisy place—and many of these centers are noisy. This might seem quite strange, but the noise is due to the fact that the autistic individuals who can deal with noise often play noisy games such as video games, and this is, in turn, supplemented by the screaming fits of the other autistic individuals who are falling apart.
Now there was this one girl named Cathy who fell apart in less than an hour after her parents left her at the daycare on the first day. My mother, who was also at the daycare, found her and decided to take her back to her parents. She found out where the parents her, and I accompanied my mother and Cathy.
My mother took the girl back to her parents and returned to the daycare. Later, she learns that she broke the rules. It is against the rules for any child who attended that daycare to leave the room--period. There was only one exception--for a trip to the bathroom. My mother, the logic-follower, thought that while this rule made sense, there should be another exception to that rule: it was okay to leave the room if the child was accompanied by an adult for other reasons. And she considered herself an adult.
Cathy fell apart again, and spent the whole time on the verge of tears between various tantrums. She didn't play with anyone. Rather, she went into a corner and colored pictures. Sometimes she hugged herself and just shut down.
Another child, Jack was walking through the room with his ears covered. He would not put his hands down. Yet he was not allowed to leave the room either. When my mother went to his mother and politely asked if she could do something to help her poor son, she told my mother, "Oh, he just does that. It's one of his habits." This child, however, clearly "did" that due to sensitive hearing.
And then there was Christina, a girl who just fell apart on the third day. She lay down on her stomach, kicking and screaming, demanding if she could leave. This went on for a half-hour, and I witnessed this, feeling terrible that I nor anyone else was able to do anything, and that this helplessness was due to pointless rigidity on the part of the staff. Because she was unable to leave the room, she had to deal with it. And the staff wondered why they were so helpless to get her to stop screaming on the floor.
Meanwhile, Dawn, a neurotypical teenage girl who was also asked to stay there while her parents were at the conference stood in a corner and played her game-boy, unable to stand it any more than the autistic kids. Eventually she begged her parents to let her get out of there. She was understood and was allowed to go with her parents.
This was a very blatant double standard. Autistic children see this, and wonder why they are being treated differently. They get angry about it, and we wonder why they get angry about it.
Let’s take a look at what happened here. The staff decided to believe in rules instead of logic in situations where nothing bad would have happened had the rules been bent. What was so bad about Mom taking Cathy back to her parents? What was so bad about taking all of those kids who had fallen apart and allowing them to have a break outside the room?
A similar story was recounted to me at another conference. In this case, it's your turn to tell me what is justified and what isn't.
An autistic boy had severe sound sensitivities. This put him under a constant ring of fear because of the uncertainty of when they were going to have a fire drill. When the school had a fire drill, he had to get out of the building as fast as possible in order to get away from that noise. Unfortunately, he could not wait and line up with his class. He just ran out of the classroom before everyone else. In the process of running he often trampled his fellow classmates, which resulted in them getting injured. So the parent of this child asked if the school could please notify her son prior to a fire drill for the sake of the class. It was also proposed that someone, perhaps maybe an aide, take him out of the building before the drill even began.
Do you think that this child should receive that service? Is that justified, given that he might stop trampling those children? Yes, it is. And I think that logic should prevail in this situation.
I’ve talked to you about what happened at Daycare 1. Now I’m going to talk about Daycare 2.
When I first set foot into the center, I knew it was a place that was much different than Daycare 1.
The setup of the room was different. The first daycare was just one big room with electronics scattered throughout the room. The second daycare was one big room with a partition between the two rooms. The partition did not completely split the room into two--there were two entrances on either sides of the room to walk through. But the partition acted as a sound barrier. One room had a TV, the other did not. And because of the sound barrier, one quadrant of the room could be loud with the other quadrant still relatively quiet, making it possible for an autistic child who could not stand noise to get away if he or she had to.
Ninety minutes after I entered the center, the incandescent lights in the room dimmed. Why was this? I went and asked. I was given the reply that there was one child who was sensitive to the lights. When the lights were dim, the child was no longer sensitive. But business at the daycare went on as usual. It was obviously not disrupting anyone.
Whenever a child melted down, he was given permission to leave the room, accompanied by an adult.
While I talked to the staff about their policies, a staff member told me that they would not allow a child to run around uncontrollably because they could hurt the other kids. I understood this rule. However, there was one girl who was running across the room. But she was in control of her running, and only ran across in a specific pattern, with no change in her pattern. When I pointed her out to the staff, they explained that since she was not hurting anyone and was aware of the presence of the other kids, they did not stop her from running. I agreed with them.
What can we learn from these examples?
It is possible for autistic children to be controlled. It is possible for autistic children to be disciplined. And it is also possible for autistic people to not fall apart. But what made Daycare 2 such a better place compared to Daycare 1? Because everyone was willing to adjust. The neurotypical staff members adjusted to the autistic individuals, who in turn adjusted to the neurotypical staff. Many children agreed not to fall apart or break the rules if they were given permission to do something they wanted; and complied because they had an incentive to comply.
Remember, the refusal to do something without an incentive is not autistic. Who would be willing to go and be in Survivor if the possibility of winning a million dollars was not there?
There are also two other lessons we can learn.
First, if there are no truly bad repercussions that will arise with the bending of a rule, then the rule should be bent. Nothing No harm was done with the dimming of the lights. No harm was done when that girl was allowed to run.
Second, while discipline should be used in situations where a child truly did misbehave on purpose, or when a child is out of control, you need to go further. After getting a child under control, even if you must use the 1-2-3 method, you can investigate why the child is doing what he or she is doing, and try to analyze the situation.
Here’s an example that illustrates this principle. At Daycare 1 there was one nonverbal autistic boy who was uncontrollably banging on the keyboard on my computer system. I told him to stop, and resorted to disciplining him. I grabbed him, and then lay down on the floor. I spent the next twenty minutes letting him grab my face. I had realized that this child was someone craving the tactile stimulation of banging on something, and he needed to touch something. However, since he could have potentially damaged by keyboard (which ended up being completely destroyed by the end of the second day by other kids), I let him use my face, and the problem was solved. It was solved not by stopping the child, but getting him in control and letting him meet his need safely.
It is also worth disciplining a child who is uncontrollably running around and biting his T-shirt everywhere he goes. However, I should point out that the reason why a child bites his shirt is to experience the same sensory stimulation that the child in the previous example had to. There are two classes of autistic people regarding sensory issues--those who are overly sensitive, but there are those who are underly sensitive and crave sensory stimulation. Some autistic people are half-deaf, not sound sensitive, and love fire drills.
But if you're going to get anywhere with an autistic child you're going to have to adjust to a certain extent to that child. Many staff members at schools and daycares think they're going to be able to get off easy and just force the autistic person to change and it'll be all right. This is an understandable impulse on the part of the staff member--it's easier, and we always try to take the easier path if we can. But it works both ways. Just as you're trying to find an easy way to deal with an autistic person, the autistic person is trying to find the easy way to deal with you. For this reason, you both need to adjust to one another.
You also have to use the honor system when an autistic person complains about something. Rather than just assume that everything he says is mere exaggeration, such as his complaints about bullies, take as a given that what he says is honest. It's likely to be honest, in part because many autistic people value honesty. over politeness, and do not like politeness. Contrary to what some people believe, just because a child is autistic does not mean that what they automatically say is wrong.
Finally, you need to think in terms of whether or not something an autistic child has to do is "essential" versus "non-essential." If something does terrify an autistic child, you need to ask whether the autistic child really has to do it in the first place. Eating is obviously essential. But taking ballet is not. Getting a job is essential; getting a job as a taxi driver is not.
Even determining whether or not something is essential is defined by context. In the context of becoming a doctor, going to medical school is essential. In the context of becoming a fry cook, going to medical school is not. An autistic child who wants to take hockey lessons is going to have to learn how to ice-skate. In that context, learning how to ice-skate is essential.
This is what my mother did. She questioned everything. She even questioned whether or not school was essential for me. But she acknowledges that just because going to junior high was not essential for me does not mean it is not essential for every other autistic child. Nor does she fail to acknowledge that not everyone can homeschool. And that’s why I’m here talking to you.
Finally, I’m going to talk about context, and how it relates to meltdowns.
The meltdown is the SOS for the autistic child. The child can no longer deal with whatever he is being asked to do. Forget about the fact that the state mandates school attendance for the child. Forget about the fact that the state mandates monthly or bi-monthly fire drills (like in New York) during school. Forget about the fact that the IEP requires the autistic child to make five friends by the end of the school year. The child has had enough. And if he’s younger, he’ll either scream, melt down or just freeze. If he’s older, he might turn violent and attack his family or staff members, like Crash, the child I mentioned to you earlier.
But who’s at fault for this violence? Yes, the autistic person is at fault if he hits a staff member. Yes, the autistic person is at fault if he melts down. But he’s not the only person at fault. Who else is at fault during a meltdown? You.
I’m not talking about you
personally. I’m sure there are many caring, compassionate teachers and
professionals in this audience, and I’m not here to hurt them. I meet many
caring parents and professionals whenever I present, or attend a conference.
However, if you are one of these people, you are no doubt aware about other
people in your professions who are not so nice. And that’s who I’m referring
to. So, when I say “you,” I am referring to the teachers out there who do not
understand autism, and refuse to try to understand autistic children.
You are the ones who cause the meltdown. You force the autistic child into conditions he does not want to be in, to follow laws that he does not understand. And then you make the wrong approach about how to solve the meltdown—you give all this effort to control the child but give little effort after the meltdown is over to prevent another one from happening. You do it to yourself. You cause the behavior problem, and since you don’t know why, so you blame it all on the autistic person.
But you’re not bad people. You’re not evil. You’re not doing this deliberately to hurt others. But be aware that this is how the children you are with think of you. This is how I thought of you. When I did go to school, I thought that those staff members who were not nice were inherently evil people. Only later did I realize that you
I also realized that you and me are at one. We are equally in the same boat. You do not understand me; I do not understand you. I fall apart and you do not know why. But I do not understand why you do what you do, and why you yell at me when I fell apart. We both do not understand each other. Your misunderstanding is mine; and mine is yours.
But you—and by “you” I now am referring to the audience—came here to learn. To be able to understand. And you’re trying your best to understand.
During a meltdown, if you are able to, you have to concede to the child. He’s not going to obey you in that state—indeed, one of the many reasons why autistic children melt down is so they don’t have to obey you. Others will melt down even when they don’t have to because they feel that is the only way people will listen. If he has to have his blue cup, you have to give it to him.
If you cannot meet the child’s wishes, let the child be alone, unless the child wants someone to be with him. Sequester him in a room. That is a reason in itself for many meltdowns; many autistic children who want to be alone think it’s the only way people will leave them alone. Sending him to his room might be the best thing you could ever do to help him.
If the child is not tactile sensitive, you can do what I liked best—roll him in a blanket. This sometimes works for similar reasons I just mentioned. He has just been given a place to cocoon and be by himself.
All these approaches are good ways to stop a meltdown. But after the meltdown is over, people go on and stop there. But you shouldn’t stop there. You need to keep going. Now that you have stopped a meltdown, it’s now time to try to see how you can prevent a future meltdown. You need to think—why did this meltdown occur? What was the autistic child doing? In what context did the meltdown take place? Some contexts are more obvious than others. If a meltdown occurs during a fire drill, it’s likely the meltdown was caused by a fire drill. If a meltdown occurs randomly out in a specific place, then probably there’s something in that place that causes that child to have a fit.
Not all autistic children melt down for the same reasons. But regardless of the reason, very few autistic people suddenly melt down. There’s almost always a reason, if you are willing to spend the time looking for it. But since the underpinnings of these meltdowns are invisible to the neurotypical parent or professional, it’s no surprise many people think they happen suddenly.
This is important because if you have stopped a meltdown, but don’t try to find ways of preventing a future meltdown from happening, the autistic child is likely going to melt down again. So the real solution lies not in what to do to control the child, but to find out why a specific autistic child melts down, and to prevent future meltdowns from happening.
I’ve already discussed meltdowns before in this presentation. In my section about rules, I showed you how the adamant following of a single rule resulted in unnecessary meltdowns. I also showed you that these meltdowns had logical explanations that I had analyzed.
Meltdowns are not uniquely autistic. People sometimes believe that only autistic children melt down, but it’s not true. Kids without autism, especially toddlers, frequently melt down. When an autistic child melts down, what we see is not something unique to autism but a process that would occur in any child. It just appears to occur in autistic children because the process happens more often with autistic kids. The process is simple: the child is put in a situation they cannot cope with, and they cannot escape. So they fall apart. Since autistic children are put in more situations they cannot cope with, and cannot escape, an autistic child is more likely to be noticed when he or she melts down. Also, autistic children melt down in situations very few neurotypical children melt down in, and thus, they are more likely to be noticed when they melt down.
At the daycare where I volunteer, I witnessed a six-year-old neurotypical girl melt down. The cause of the meltdown was obvious, and it was started by the girl’s mother. She was as equally responsible as her daughter for causing the meltdown, but of course, only the daughter was punished.
What do I do at the daycare? I play. With three, four, and five year-olds. But I play at their level. They do not play at the level of a seventeen-year-old, but then, neither do I when I’m not at the daycare.
One day, three children walk in—a six-year-old and four-year-old girl, and a two-year-old boy. I’m playing with another child, so I ignore them. Then I hear a loud screaming. I look to see what’s happened. The six-year-old is having a tantrum.
She screams, “I want my mommy! I want my mommy!” One of the staff members tells her she will get her mommy. “I want her now!” she cries. I know it’s a bluff. That parent is not going to come back. No parent ever has before. I return back to the game I’m in, since I’ve witnessed this happen before. I tune out the screaming. When it stops, I look to see her in a chair, playing frozen. Her face is in tears.
The game I’m playing ends. I start another game, and after the six-year-old is calmed, I play it with her. Her mother finally arrives, and she runs to her mother.
The staff tells her mother that her daughter had a fit. Her mother then says to her daughter, “You misbehaved. You did a bad thing and you need to apologize. Say you’re sorry.”
The girl looks at her mom and says, “No.”
“Say you’re sorry.”
“Say you’re sorry.”
The girl tries to get away from her mother, but her mother grabs her hand to stop her from escaping.
“We’re not leaving until you say you’re sorry.”
“Say you’re sorry.”
“We’ll stay here until it closes if you don’t say you’re sorry.”
“You know, I’m hungry for lunch. Your sister wants to go home. So just say you’re sorry.”
I sit down in a comfortable chair and witness this, eyeing the clock. This goes on for another ten minutes. I am silent. Obviously I didn’t go off and lecture this parent, nor did I tell her I was going to bash her in my next presentation.
“Say you’re sorry.”
“I’m sorry,” she says very softly.
“Say it nicely. Say it.”
During this her younger sister, a four-year-old, says to her mother, “I’m sorry, Mom. I’m sorry” constantly.
“You didn’t misbehave. Your sister did. She has to say she’s sorry. Now, do you want to go home?”
“Yes,” the younger sister said.
“Then tell your sister to say she’s sorry so we can go home.”
“I want to go home,” the younger sister said.
“You see? You’re hurting your younger sister by denying her the ability to go home. Say you’re sorry.”
“I can’t take this anymore. Say you’re sorry.”
“All right. We’re staying here until you say sorry. We won’t even go on the trip we’re taking this week. Say you’re sorry.”
This goes on for another ten minutes. By now she’s trying to get away from her mother and has resorted to scratching her arm to get away.
“Say you’re sorry.”
“Say you’re sorry.”
Finally the girl, having been defeated, goes up to the staff member and says, “I’m sorry.”
Then they leave. On the way out, her mother looks at me and says, “Thank you for being with her.”
What happened during those twenty minutes was ridiculous. Everyone blamed it all on that six-year-old—when in fact the mother was just as much at fault as her daughter. Her daughter was wrong to talk back to her mother. Her daughter was wrong to scratch her mother. But the mother did it to herself. She didn’t come for her daughter, and then had to nerve to ask for an apology and to call it misbehaving. But what was her daughter doing? Showing some emotion towards her mother. And because of that, she got punished. What is she teaching her child? Not only do her feelings not matter, but that showing love toward your own mother is misbehaving.
I’m not faulting the mother for not coming back to her daughter when her daughter had a meltdown. I am faulting the mother for making a big deal out of that meltdown instead of comforting her daughter and reassuring her that it was okay. And then I am faulting her for escalating it for twenty minutes, not to mention putting her daughter on the spot by somehow making it HER fault that her younger sister was going hungry and that she didn’t go home.
You’re the one at fault! You’re the reason why your younger daughter is hungry, not your older daughter! You’re the one putting the ultimatum on your daughter!
You cannot back down if you’re the mother after twenty minutes. Neither can you let the child get away with scratching her mother’s arm. Nor can the child win after twenty minutes. But who started it? Who provoked the child that compelled her to scratch the arm? The mother. The child cannot win the power struggle, but the mother should have never started it in the first place.
You are going to have to listen to an autistic child if you want to prevent a meltdown. This might seem unthinkable, but is it really? Is it really worth fighting a child who is suffering if you could just compromise and accommodate the child? Was it really that bad for the staff of Daycare 2 to accommodate those children? No.
Likewise, in fourth-grade, when my teacher would keep her overhead projector on or turn it back on if I had not finished taking down notes she wanted me to take down—was it really that bad? No. When my teacher allowed me to sit alone, away from other kids, was it really that bad? No. I was relentlessly teased in the fourth-grade, but I had an understanding teacher. And that made the difference.
To conclude, I’d like to say that while all the stories I’ve told differ, there is one thing that is in common: It is the context which a behavior or a meltdown is going on that ultimately determines the severity of the situation. It is not the behavior or meltdown in itself. Meltdowns are acceptable and understood during an air raid or a hurricane such as the hurricanes that struck New Orleans and Biloxi in the summer of 2005. They are not understood in the situations I mentioned above. But just because they are not understood does not mean that they can’t be understood. And that is your job. To try to understand the context in which something happened—whether it may be an inner motivation, the room in which it happened, the noises, or the ages of the people involved. There’s always a logical answer—if you’re willing to find out what it is.
Thank you. I will now answer your questions.
[Postscript, written on June 6, 2006]: While I have just told a story in which I have portrayed a parent negatively, and do believe that how the parent handled this situation was wrong, this does not necessarily mean that this person is a bad parent. Parents, like all people, have good days and bad days, and often will get angry at their children. People who are angry get irrational--there is nothing wrong with this. Everyone has a right to let their anger out. For this reason, we should not entirely judge a person when they are angry, nor should we argue that if a person says something negative when they are angry, they truly believe it when they are not angry. But it also means that after a person is done getting out their anger, they should try to understand what got them angry and to think about what can be done to prevent that anger from coming again. When a person is angry, they can be irrational, but they should also try to learn from their anger and to see how a problem can be solved more rationally once they cease to be angry. For this reason, the intention of telling a story like this is not to insult this parent or parents in general, but rather to see how a problematic situation formed in the past so we can learn from it.