Realizing that your youngster will not be a good observer of his behavior is your first step. The Aspergers (high-functioning autistic) youngster often does not know what to do in a situation. He does not know the appropriate behavior because he doesn't understand how the world works. Or, if he knows a better solution, he cannot use it because he becomes "stuck."
Not knowing what to do - or being unable to do what is appropriate - results in anxiety that leads to additional ineffective and inappropriate actions. An Aspergers-like behavior is usually a result of this anxiety, which leads to difficulty moving on and letting go of an issue and "getting stuck" on something. This is rigidity, and it is the most common reason for behavioral problems. See the sidebar for a list of reasons for rigidity. You must deal with rigidity and replace it with flexibility early on in your plan to help your youngster. Flexibility is a skill that can be taught, and you will make this a major part of your efforts to help your youngster.
Reasons for Rigidity—
1. A misunderstanding or misinterpretation of another's action.
2. A violation of a rule or ritual – changing something from the way it is supposed to be. Someone is violating a rule and this is unacceptable to the youngster.
3. Anxiety about a current or upcoming event, no matter how trivial it might appear to you.
4. Immediate gratification of a need.
5. Lack of knowledge about how something is done. By not knowing how the world works with regard to specific situations and events, the youngster will act inappropriately instead.
6. Other internal issues, such as sensory, inattention (ADHD), oppositional tendency (ODD), or other psychiatric issues may also be causes of behavior.
7. The need to avoid or escape from a nonpreferred activity, often something difficult or undesirable. Often, if your youngster cannot be perfect, she does not want to engage in an activity.
8. The need to control a situation.
9. The need to engage in or continue a preferred activity, usually an obsessive action or fantasy.
10. Transitioning from one activity to another. This is usually a problem because it may mean ending an activity before he is finished with it.
Note: Attention-getting is very rarely seen. It should not be considered as a reason for rigidity until all of the above reasons have been considered and eliminated.
Understanding your youngster involves knowing the Aspergers characteristics discussed earlier and how they manifest themselves in everyday behaviors. How does your youngster or adolescent see the world, think about matters, and react to what is going on around him? The following reasons will help you understand "why he acts the way he does."
Not Understanding How the World Works—
Your Aspergers youngster has a neurocognitive disorder that affects many areas of functioning. This includes a difficulty with the basic understanding of the rules of society, especially if they are not obvious. Life has many of these rules. Some are written, some are spoken, and some are learned through observation and intuition. Your youngster only knows what has been directly taught to him through books, movies, TV shows, the Internet, and explicit instructions. He is not able to sit in a room, observe what is happening, and understand social cues, implied directions, or how to "read between the lines," and as he is growing up, he does not learn how to do this. Instead, he learns facts. He does not "take in" what is happening around him that involves the rest of the world, only what directly impacts him.
Many of the conversations he has had have generally been about knowledge and facts, not about feelings, opinions, and interactions. As a result, he does not really know how the world works and what one is supposed to do in various situations. This can apply to even the smallest situations you might take for granted. Not knowing the unspoken rules of situations causes anxiety and upset. This leads to many of the behavioral issues that appear as the Aspergers youngster tries to impose his own sense of order on a world he doesn't understand.
The Aspergers youngster creates his own set of rules for everyday functioning to keep things from changing and thereby minimize his anxiety. Sometimes, he just makes up the rules when it is convenient. Other times, he attempts to make them up by looking for patterns, rules, or the logic of a situation to make it less chaotic for him and more predictable and understandable. If there are no rules for an event or situation, he will create them from his own experiences based on what he has read, seen, or heard. He will often have a great deal of information to use in reaching his conclusions and forming his opinions and feelings. As a result, some of his conclusions are correct and some are wrong.
He will rarely consider someone else's point of view if he does not consider them to be an "expert." The fewer people he sees as experts, the more behavioral difficulty you will see. He might consider teachers and others to be experts, but his parents will rarely be seen as such. Therefore, he will argue with you about your opinions if different from his own. He thinks that his opinion is as good as yours, so he chooses his. This represents his rigid thinking. He finds it difficult to be flexible and consider alternate views, especially if he has already reached a conclusion. New ideas can be difficult to accept ("I'd rather do it the way I've always done it"). Being forced to think differently can cause a lot of anxiety.
You must never overestimate your Aspergers youngster's understanding of a situation because of his high intellectual ability or his other strengths. He is a boy who needs to figure out how the world works. He needs a road map and the set of instructions, one example at a time.
Frames of Reference—
In trying to understand how the world works, your youngster tries to make sense of your explanations, but sometimes is not able to do this. As a result, your effort at intervening falls short. This can occur because your explanation has no meaning. Each Aspergers youngster can only understand things for which they have a frame of reference, meaning they have a picture or idea about this from other sources or from prior discussions. They cannot understand what you will tell them without this frame of reference. For example, when I asked a teenage boy if he missed his parents when he was at overnight camp for a week, he replied that it was not all that long. When I asked him again if he missed them, he said he could e-mail them whenever he wanted. After my third attempt to get an answer he finally said to me, "I can't answer that question. Since I have never missed anyone before, I have nothing against which I can compare my feelings to know what missing feels like." In the next few chapters we will explain how to give your youngster or adolescent a new frame of reference.
Preferred and Nonpreferred Activities—
For all Aspergers children, life tends to be divided into two categories – preferred and nonpreferred activities. Preferred activities are those things he engages in frequently and with great intensity. He seeks them out without any external motivation. However, not all of his preferred activities are equal. Some are much more highly desired and prized. An activity that is lower on the list can never be used as a motivator for one that is higher. For example, you cannot get him to substitute his video game playing by offering a food reward if the game playing is higher on his list.
Any activity that is not preferred can be considered nonpreferred. They are less desirable and many are avoided. The lower they are on the list of desirability, the more he will resist or avoid doing them. Sometimes an activity or task becomes nonpreferred because it is made to compete with one that is much more highly valued. For example, taking a bath could be enjoyable, but if your youngster is reading, and reading is higher on his list, he will resist or throw a tantrum.
Preferred and nonpreferred activities are always problem areas. Your youngster or adolescent will always want to engage in preferred activities even when you have something more important for him to do. He does not want to end preferred activities and your attempts to have him end them can produce upset of one kind or another. On the other hand, trying to get him to do nonpreferred activities, such as interacting socially, can also be difficult. If many nonpreferred elements are combined together, the problem can become a nightmare, such as with homework.
The Aspergers youngster rarely has activities he just likes. He tends to either love or hate an activity. The middle ground is usually missing. Teaching a middle ground or shades of gray can be a goal and will be discussed later. Also, as you try to teach him something new, you will encounter resistance because you are asking him to do something that's not a preferred activity. But, as he outgrows younger interests, he will need to learn new ones in order to have some common interests with his peers. He needs to experience new things to see if he likes them, but may not want to do this just because you're asking him to do something new. He already has his list of preferred interests and will rarely see the need for anything new. Quite often, his preferred list will include computer or video games. However, the more he is on the computer or the more he plays video games, the less available he is to be in the real world and learn something new. Most likely, you will have to control his access to preferred activities if new ones are to be introduced.
Obsessive-Compulsive Behaviors and Anxiety—
Obsessive-compulsive issues, also referred to as rituals, rigidity, perseverations, rules, or black-and-white thinking, originate in the Aspergers person's difficulty understanding the world around him. This creates anxiety, the underlying cause for his obsessive-compulsive behaviors. You will see anxiety in many different ways, depending on how your youngster manifests it. Some kids will show it in obvious ways, such as crying, hiding under furniture, or clinging to you. Others show it by trying to control the situation and bossing people around. Some may hit or throw a tantrum. Some may act silly. No matter how your youngster displays his anxiety, you need to recognize that it is there and not assume it is due to some other cause such as attention seeking or just plain misbehavior.
Anxiety can occur for the smallest reason. Don't judge anxiety-producing situations by your own reaction to an event. Your youngster will be much more sensitive to situations than you will be, and often there will be no logical reason for his anxiety. Something that you would be anxious about causes no anxiety in your youngster, while a small event causes him to be quite anxious. When events change, he never knows what is going to come next and he becomes confused and upset, leading to some form of inappropriate behavior.
Your youngster's first reaction is to try to reduce or eliminate his anxiety. He must do something, and one of the most effective means is to take all changes, uncertainty, and variability out of the equation. This can be accomplished by obsessions. If everything is done a certain way, if there is a definite and unbreakable rule for every event, and if everyone does as he wishes, everything will be fine. Anxiety is then diminished or reduced, and no upset, tantrums, or meltdowns occur.
Unfortunately, it is virtually impossible to do this in the real world. Nevertheless, anxiety needs to be dealt with in some manner. This is the first order of business in planning for many interventions. If you move ahead before this has been settled, it will continue to be a significant interfering factor. Let's look at some examples of this.
Allen, age seventeen, won't leave the house because he wants to have his nails in a certain condition. This condition requires many hours of grooming that interfere with sleeping, eating, and doing just about anything else. This is obsessive-compulsive behavior. Any attempt to get him to leave the house or stop his nail maintenance causes anxiety and is rarely successful.
Anytime Craig, age eleven, hears an answer that he does not like, he becomes upset. If he asks a question or makes a request and the other person's response is not what he expected, he starts to argue with them, often acting out physically. He must have certain answers that are to his liking. This is rigidity in thought and it is also obsessive-compulsive.
Each of these cases has a cognitive and a behavioral component, and both must be considered. Each youngster must learn to get "unstuck" or let go of an issue and move on. They also need to learn how to change their thinking so that it doesn't become a problem to begin with.
Behavioral Manifestations of Anxiety—
- Becoming easily overwhelmed and having difficulty calming down.
- Creating their own set of rules for doing something.
- Demanding unrealistic perfection in their handwriting, or wanting to avoid doing any writing.
- Demonstrating unusual fears, anxiety, tantrums, and showing resistance to directions from others.
- Displaying a good deal of silly behaviors because they are anxious or do not know what to do in a situation.
- Eating a narrow range of foods.
- Having a narrow range of interests, and becoming fixated on certain topics and/or routines.
- Having trouble playing and socializing well with peers or avoiding socializing altogether. They prefer to be alone because others do not do things exactly as they do.
- Insisting on having things and/or events occur in a certain way.
- Intensely disliking loud noises and crowds.
- Lecturing others or engaging in a monologue rather than having a reciprocal conversation.
- Preferring to do the same things over and over.
- Reacting poorly to new events, transitions, or changes.
- Remaining in a fantasy world a good deal of the time and appearing unaware of events around them.
- Tending to conserve energy and put forth the least effort they can, except with highly preferred activities.
- Wanting things to go their way, when they want them to, no matter what anyone else may want. They may argue, throw a tantrum, ignore you, growl, refuse to yield, etc.
Black-and-White Thinking and Mindblindness-
The obsessive-compulsive approach to life results in the narrow range of interests and insistence on set routines typical of an Aspergers youngster. However, it usually starts as a cognitive (thinking) issue before it becomes a behavioral one. Cognitive issues, such as the inability to take someone else's perspective (mindblindness) and the lack of cognitive flexibility (black-and-white thinking), cause many of the behaviors we see. We know there is a cognitive element by looking at the youngster's behaviors. There is always some distress, anxiety, or obsession manifested in every inappropriate behavior.
As mentioned, your youngster's cognitive difficulties lead to inaccurate interpretations and understanding of the world. How someone interprets a situation determines how he will respond to it. Many times the interpretation of an event is either not an accurate one or not one that leads to positive or prosocial actions. If the event can be reinterpreted for him, it might lead to a more productive outcome. In doing this, we must first try to understand how the child interprets a situation. All of the child's behaviors are filtered through his perception of the way the world works.
Take a look at the questions in the sidebar as they pertain to a problem situation. Try to answer all the questions to see which explanation fits the situation the best. Each of these questions represents a problematic way of thinking for your youngster. As a result of your questioning, it should become clearer that your youngster is engaging in a nonproductive interpretation and that correcting this faulty thinking with a more positive interpretation could lead to a more positive action. Remember, details are extremely important in trying to understand what is happening and what to do about it. Do not try to intervene until you understand, at least to a small degree, what is happening with your youngster. Changing thinking becomes a paramount issue, but one that is often neglected. However, successful changes in thinking will dramatically increase the success rate of any strategy you use.
Questions to Ask about Your Youngster's Behavior—
To help you determine the reasons why your youngster acts the way he/she does, you should ask yourself the following questions:
1. Because a situation was one way the first time, does he/she feel it has to be that way always? (Being rule bound.)
2. Does he/she need to be taught a better way to deal with a problem? (He/she does not understand the way the world works.)
3. Does he/she see only two choices to a situation rather than many options? (Black-and-white thinking.)
4. Has he/she made a rule that can't be followed? (He/she sees only one way to solve a problem. He/she cannot see alternatives.)
5. Is he/she blaming you for something that is beyond your control? (He/she feels that you must solve the problem for him/her even when it involves issues you have no control over.)
6. Is he/she exaggerating the importance of an event? There are no small events …everything that goes wrong is a catastrophe. (Black-and-white thinking.)
7. Is he/she expecting perfection in him/herself? (Black-and-white thinking.)
8. Is he/she misunderstanding what is happening and assuming something that isn't true? (Misinterpretation.)
9. Is he/she stuck on an idea and can't let it go? (He/she does not know how to let go and move on when there is a problem.)
My Aspergers Child: Preventing Meltdowns and Tantrums