"I'm impressed. Half way thru I thought to myself, "schools need to read this!" I love the line about while we are busy trying to figure out an easy way to deal w/ the child w/ autism, that child is trying to figure out an easy way to deal w/ you!
-- Wisconsin Autism Therapist
A Tale Of Two Daycares
No matter where you are, whether you are in a primitive tribe, a friend's house, or just with two other people, you must always follow a set of rules. Even rebel gangs have rules inside their gangs that everyone follows.
However, there are two theories to rule-following I have seen when I’m at social events, out at conferences, and at the daycare center where I volunteer. In this essay, I'm going to talk about these theories, and relate them to autism. The first is the theory of rules. The second is the theory of logic.
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.
The theory of logic can, and often does, concede to the theory of rules. But not vice-versa.
Most people believe in a combination between these two theories. And some people are adamant about some rules but will allow for exceptions in other rules. Even autistic people have different opinions. Some autistic people will try to be as adamant as possible, even too adamant, because they need that structure. Rules provide structure in a confusing world. If you see an autistic person have silly rules that they've created, it's likely they are attempting to come to terms with their uncertainty, and this is how they are doing it. This is also why many autistic people become relentless policemen at times, tattling on everybody. These people believe in the theory of rules.
Then there is another group of autistic people that do not understand certain rules when they hear them, and thus do not follow them. These people do not see why they have to follow them, and for this reason, they're looking for any way possible to not follow them. These people are inclined to believe in the theory of logic.
And then there is a third group--a group of autistic people who are hurt by people who enforce rules. The rules say that they cannot shut down and thus are forced to suffer in silence. These autistic people believe in the theory of logic as well.
Many autistic people, myself included, have been in all three of those groups in different situations.
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. 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, so can many rule-believers as well. But believers in rule-following have the power to be led astray 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 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 Dumbeldore. Ironically, it is the logic-follower, Professor Dumbeldore, who usually triumphs over the rule-followers. Harry Potter, in order to be the hero, must break the "rulebook" yet since he does a heroic act, Dumbeldore rewards this, even though McGonagall might have gotten him in trouble in the process.
In my opinion, logic should prevail if there is no terrible repercussions that arise when the rule is broken or bent. Logic should prevail obviously if a negative repercussion arises if the rule is followed. However, a rule should 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 my mother why I did it and we then analyze the situation. But not everyone can do that.
Autism conferences often have daycare, if they are big enough, for the parents who have come to the conference. At two autism conferences I was given the opportunity by the staff at the daycare to help out. I am going to share with you what I observed at those daycares, but I will not tell you anything about those daycares except call them 1 and 2, because I will be talking negatively about people and do not want them to be identified.
The attitudes of the staff members at Daycare 1 were drastically different than the attitudes of the staff members at Daycare 2. The room was even aligned differently.
At Daycare 1, there was one large room. Now, for those of you who have never set foot at one of these centers, they are typically noisy places. 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.
At Daycare A there was one girl named Cathy who fell apart in less than an hour after her parents left her. My mother, who was also helping out at the daycare, as well as the organizer, found her and decided to take her back to her parents. She found out where the parents were and took Cathy back to them. I accompanied them. Then my mother and I returned to the daycare.
Later, she learned that she broke the rules. It turned out that 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. She also learned that this rule was partially created due to the complaints of the parents.
Well, 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. When I came up to her once, she said she wanted to be alone, and she wanted to color. I never went back again.
Then Jack, another boy, was walking through the room with his ears closed. 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, his mother 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 just leave. This went on for a half-hour. Because since she was unable to leave the room, she had to deal with it.
Meanwhile, Dawn, a neurotypical teenage girl who was also asked to stay there while her parents were at the conference also 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. Of course, she was understood and was allowed to go with her parents.
On the last day of the conference the staff at Daycare 1 got a supply of special balloons. They were very long and wide. The staff would blow them up with bike pumps, and then they would fly in the air as they lost their air. Unfortunately, they frequently popped, and while there were many children with autism who enjoyed seeing the balloons, this terrified the sound-sensitive autistic individuals. This led many autistic children to fall apart again.
When I mentioned to the staff that the balloons were bothering some of the kids, their reply was, "Well, we can't get rid of them because that would be unfair to the kids who like the balloons."
That's no reason. That's just a lame excuse. The kids who liked the balloons didn’t need to play with them. The staff started it. They're the ones who brought the balloons in there. If it weren't for them, this issue would not have even come up.
Other issues occurred at Daycare 1. Children appeared to be out of control with the staff seemingly helpless to control them. However, when I analyzed them, I realized that they were not out of control. One girl spent her time running around the daycare with a big sheet in her hand. The staff tried to get her to stop but she wouldn't listen to them. I realized what was going on: she was trying to find someone to play a sheet game with, yet no one wanted to play with her. She was not out of control. So I pulled out another sheet and started playing with her. It turns out the sheet game was a game of hunter and cat--I was the hunter, she was the cat. I was supposed to be trying to capture her but was never supposed to succeed. Ironically, the staff gave me the following warning: "If you get her going, you won't be able to stop her." However, that was proven false when the staff eventually asked me to stop playing.
How did I stop the game? I stopped running, and announced that the hunter, in his inability to catch the cat, starved to death. I then fell down and pretended to die. I instructed the girl to take the sheet and put it over my body, and to then give me a proper funeral. The game ended. But guess what happened.
THE GIRL STOPPED!!!
And she didn't start playing the game again—after the staff had been unable to get her to stop the entire day.
What this shows is that when things like this happen, it's likely because there is a need the child is trying to meet. The girl had a need to engage in reciprocal play. But of course, most autistic children do not want to play, so she couldn't find someone her age at the daycare.
Now I'm going to talk about I asked to silently observe for an hour, wanting to see how this daycare was run. I was granted permission. This silent observation, however, did not last long--in less than fifteen minutes I was put to work by the staff, and then returned periodically throughout the conference to help out.
When I first set foot into the room, I knew it was an enlightened place. For one thing, the setup of the room was drastically different. The first daycare was just one big room with electronics scattered throughout the room. The second daycare, however, was one big room with a partition inside the rooms. The partition did not completely split the room into two--there were two entrances on either sides of the partition to walk through. But the partition was 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 those who could not stand noise to find a place to get away.
Ninety minutes into my visit something happened. The lights, which were incandescent bulbs, suddenly were dimmed. Why was this? I went and asked. I was given the reply that there was one child who was sensitive to the lighting and that with the lights dim the child was no longer freaked out. However, business at the daycare went on as usual, so it was not a disruption.
Another interesting thing happened. Whenever a child melted down, he was given permission to leave the room, accompanied by an adult.
And then, they told me that one boy refused to have his name tag on his shirt. However, all of their kids there had to have their name tags on, and so the staff members tried to just put it on him when he wasn’t noticing. Now, I noticed that on his back he had a big backpack. Then I explained to the staff that the reason why he was uncooperative was because he could not stand the feel of his name tag on his shirt. They were happy for my explanation, acknowledging they had not thought about that. Then, after putting his name on the back of his shirt, which he promptly removed, I put the name tag on his backpack. He didn't feel it, and they knew who he was.
Then there was another girl who spent her time skipping and running across the room in a specific pattern. When discussing policies about the daycare, a staff member told me that they would not allow a child to run around uncontrollably because they could hurt the other kids. I certainly understood that rule. However, there was one girl who was running across the room diagonally. However, she was in control of her running, and only ran across in a specific pattern, which no change in that pattern. Because she was not hurting anyone, the staff found it acceptable.
The staff also made sure that a true meltdown was occurring before they took the child out of the room.
But when you look at these examples, what can be concluded here? 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 children to not fall apart. Fewer people fell apart at Daycare 2. But why is it that Daycare 2 was a good place but why Daycare 1 was a bad place?
The answer: everyone adjusted. The neurotypical staff members adjusted to the autistic individuals, who were in turn motivated to adjust to the neurotypical staff. Many children did not fall apart if they were given permission to do something they wanted; and complied because they had an INCENTIVE to comply. I would like to remind everyone that the failure to do something without an incentive is not autistic either; how many people would not do the work they did if it weren't for the paycheck they anticipated periodically?
Another lesson that should be learned here is that if there are no truly bad repercussions that will arise with the bending of a rule, then the rule should be bent. No harm was done with the dimming of the lights. No harm was done when that girl was allowed to run.
The next lesson is that 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 using the 1-2-3 method, you can investigate why the child is doing what he or she is doing.
At Daycare 1 there was one nonverbal autistic boy who was uncontrollably banging on keys on my computer system. Since he had the potential to potentially damage my system, I told him to stop, and even 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 touching something, and he needed to do it. However, since he could have potentially damaged by keyboard (which ended up being completely destroyed by the end of the second day) I let him use my face, and the problem was solved.
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 he has to bite his shirt is to experience the same sensory stimulation that the child in the previous example had to. There are two groups of autistic people, after all, regarding sensory issues--those who are overly sensitive, and those who are under sensitive and crave sensory stimulation. Some autistic people are half-deaf, not sound sensitive, and can deal with fire drills.
What is most important, however, is that if you're going to get anywhere with a child you're going to have to adjust to a certain extent to that child. Every time I succeeded anywhere, it was because the people I was with adjusted in some way. I was never able to succeed if people did not adjust. 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 for that person, 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. That is what is most important to realize.
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, take as a given that what he says is honest. It's likely to be honest, in part because autistic people value honesty and do not like politeness. You need to assume that there is a problem if he says it is, because it's likely there is a problem in his mind. Compare that to the other extreme—assuming that when the autistic person complains about something, it’s automatically wrong. The only time you should overrule him is if there is physical danger.
Also remember that in the context of an autistic child, you have to think in terms of whether or not something an autistic child has to do is "essential" versus "non-essential." If something terrifies 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. If an autistic person wants to do something, then in order to do that thing he has to do other things he does not like, I would call them essential. At the daycare where I volunteer there are many rules I have to follow that I do not agree with, but I still understand how to follow them and abide by them, as that is essential for staying at the daycare, and I want to stay.
But a word of caution: 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.
That’s what my mother did. She was willing to question everything—even school. And that’s why I turned out the way I did.