Help for Behavioral Problems in HFA and Aspergers Children

"Our Granddaughter is a high functioning autistic child and is totally unruly and seems to want to control everything and everyone. I don't want to give into her but need some suggestions because it is bothering us. The whole family revolves around her and her wants. It even influences her sister (both are 9) - and the sister imitates this terrible behavior. What to do???"

Here are some ideas for both High-Functioning Autistic and Aspergers children...

You need to understand what your granddaughter  is thinking, how she interprets what is going on, and how her deficits cause problems before you can begin any intervention strategy. Do not rush into action until you have collected enough information and analyzed what is going on. If you do not know the reasons behind the behavior, you may very likely do the wrong thing. If you know what is going on, you can help things go better.

Realizing that your granddaughter will not be a good observer of her behavior is your first step. The High-Functioning Autistic (HFA) youngster often does not know what to do in a situation. She does not know the appropriate behavior because she doesn't understand how the world works. Or, if she knows a better solution, she cannot use it because she 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. Behavior associated with HFA is often 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. You must deal with rigidity and replace it with flexibility early on in your plan to help your granddaughter. Flexibility is a skill that can be taught, and you will make this a major part of your efforts to help her.

Reasons for Rigidity—

• A misunderstanding or misinterpretation of another's action.
• 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.
• Anxiety about a current or upcoming event, no matter how trivial it might appear to you.
• Immediate gratification of a need.
• 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.
• Other internal issues, such as sensory, inattention (ADHD), oppositional tendency (ODD), or other psychiatric issues may also be causes of behavior.
• The need to avoid or escape from a non-preferred activity, often something difficult or undesirable. Often, if your youngster cannot be perfect, she does not want to engage in an activity.
• The need to control a situation.
• The need to engage in or continue a preferred activity, usually an obsessive action or fantasy.
• 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 associated traits 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 her or him?

The following reasons will help you understand behavior patterns:

Not Understanding How the World Works—

Your HFA granddaughter has a neuro-cognitive 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 her through books, movies, TV shows, the Internet, and explicit instructions. She 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 she is growing up, she does not learn how to do this. Instead, she learns facts. She does not "take in" what is happening around her that involves the rest of the world, only what directly impacts her.

Many of the conversations she has had have generally been about knowledge and facts, not about feelings, opinions, and interactions. As a result, she 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 HFA youngster tries to impose her own sense of order on a world she doesn't understand.

The HFA child 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 moms and dads 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 HFA granddaughter's understanding of a situation because of her high intellectual ability or her other strengths. She is a girl who needs to figure out how the world works. She 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 child on the autism spectrum 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 mom and dad 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."

Preferred and Non-preferred Activities—

For all people on the autism spectrum, life tends to be divided into two categories – preferred and non-preferred 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 non-preferred. 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 non-preferred 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 non-preferred activities are always problem areas. Your youngster or teen 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 non-preferred activities, such as interacting socially, can also be difficult. If many non-preferred elements are combined together, the problem can become a nightmare, such as with homework.

The HFA 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 HFA child'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.

Jake, 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 Michael, 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 HFA youngster. However, it usually starts as a cognitive (i.e., thinking) issue before it becomes a behavioral one. Cognitive issues, such as the inability to take someone else's perspective (i.e., mindblindness) and the lack of cognitive flexibility (i.e., 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.

The 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 individual interprets a situation. All of the individual's behaviors are filtered through his perception of the way the world works.

Questions to Ask about Your Youngster's Behavior—

To help you determine the reasons why your youngster acts the way she or he does, you should ask yourself the following questions:

1. Because a situation was one way the first time, does she feel it has to be that way always? (Being rule bound.)
2. Does he need to be taught a better way to deal with a problem? (He does not understand the way the world works.)
3. Does she see only two choices to a situation rather than many options? (Black-and-white thinking.)
4. Has he made a rule that can't be followed? (He sees only one way to solve a problem. He cannot see alternatives.)
5. Is she blaming you for something that is beyond your control? (She feels that you must solve the problem for her even when it involves issues you have no control over.)
6. Is he exaggerating the importance of an event? There are no small events, everything that goes wrong is a catastrophe. (Black-and-white thinking.)
7. Is she expecting perfection in herself? (Black-and-white thinking.)
8. Is she misunderstanding what is happening and assuming something that isn't true? (Misinterpretation.)
9. Is he stuck on an idea and can't let it go? (He does not know how to let go and move on when there is a problem.)

==> My Aspergers Child: How to Prevent Tantrums and Meltdowns in Aspergers Children


COMMENTS:

•    Anonymous said… a good article for information
•    Anonymous said… A really wonderful insightful article! Adding it to my collection to refer back to. You can never be to supportive or have to much information.
•    Anonymous said… Be firm and everyone help controllIng her behavior. It helps
•    Anonymous said… Don't judge. If one of your grandchildren needed a wheelchair and the other didn't would you complain about the child in the wheelchair needing to be pushed everywhere? Needing adaptations in the house? I'm guessing not.
Perhaps look at a local autism charity to see if they run grandparent classes, sounds like you need some help coming to terms with this and understanding what's going on.
•    Anonymous said… good article
•    Anonymous said… Great article
•    Anonymous said… Hello! This is my life!!
•    Anonymous said… Her sisters need to see her being held accountable for her actions even if it means she has to miss out on priveledges they enjoy. Having a posted "family Rules" w/ rules/consequences and following through may help. Teaching them that their sister has strengths and "weaknesses" just like they do may help. It takes a lot of stamina! Both parents should be ready for teamwork. Alone time with each child is beneficial. Good luck!
•    Anonymous said… Huh, that's weird. I have two 9 year olds one of them aspie. I have questions for the grandparents. First of all, how much actual quality time have you spent with your autistic grand daughter? How often have you engaged in discussion and really listened to her parents regarding the autism? How much respite have you provided and actually came through with for the parents? Also, what is going on with you and your perceptions in needing to see the child with autism as controlling rather than dealing with a neurological difference? I ask because in my situation the answers to those questions are "very little", "very little", "none" and "ignorance". It takes a village to raise an child on the spectrum and every single day I am asking where that village is.
•    Anonymous said… I also find that publicly calling them out on their behavior only creates a power struggle. Privacy seems to work better. Hope this helps.
•    Anonymous said… I live this with my 18 year old. But because you can't see a physical problem doesn't mean there isn't one. My daughter often says the most out landish things before speaking. But they are trying to figure out where they fit in, how, and what is their role/job in this world. Be supportive but choose which battle you are willing to fight. It may not end up quite the way you hope!
•    Anonymous said… Ignorance ...... Educate yourself so you understand not to judge
•    Anonymous said… Make her feel 'safe'. Boundaries make children feel safe but children need to know you love them. all children push to see how far they can go ...they're testing their safety. Always explain why you have rules or do something. Feeling 'safe' is important for anyone but more so for autistic.
•    Anonymous said… My 15 year old daughter has Aspergers and I've learned that her need to control everything is not about controlling everyone around her. It's about her trying to make sense of a world she doesn't understand and doesn't feel like she fits into. It's about coping and trying to create a comfort zone so she doesn't become so overwhelmed that she melts down, which is also often looked upon as bad behavior.
•    Anonymous said… My daughter is controlling. Because she feels so out of control inside, that she tries to control what is outside of her. It is not because she is bad, but because it is a way to cope
•    Anonymous said… my son has aspergers as well I'm not implying anything I know about there outburst. And its hard on us. We try everything we can to make him fee safe. And we pick our battles. I'm sorry if I offended any body
•    Anonymous said… My son was talking inappropriate and was warned. He continued and lost his phone. He then attacked him dad and put holes in the walls and doors. Then hit sister. She called the Police scared. Why is his impulse control so poor he is 14!
•    Anonymous said… The grandparents are ignorant because they dont live with the child 24/7 and if they actually knew the child completely they would understand!! Have dealt with grandparents like this and what will happen is your grandkids just wont be around you if you cant accept them and let the parents do their job.
•    Anonymous said… U have to keep giving lots of love & support even if it revolves around that child for the time being it's very hard but very important that U listen to the child to understand how he/she feels & progress From there! Xx
•    Anonymous said… With any ASD child it's not about changing then it's about us as parents/grandparents to change the way we act/approach them. Unruly? Maybe that's her way of interacting or maybe there's other factors going on like sensory issues. She may have so many things going through her head that's she's trying to process like surroundings, smells, noise that she actually cannot hear you. My one tip is keep language simple. Get the Tony Attworth book, I'll find mine and look for the name.
•    Anonymous said… You are not the parent. Please learn all that you can about Asperger's and autism before you spend a second judging your grandchild or the way her parents are raising her.
•    Anonymous said... I sympathize. It's always been so difficult for me to know where to draw the line. Will say a prayer for you both♥
•    Anonymous said... Is anyone in the uk? Do you know of anywhere I can go for support?
•    Anonymous said... Mine 10 year old son is exactly the same also. And I try really hard not to give in. But my Ex his farther just give him whatever he wants.
•    Anonymous said... My 10 year old son is the same and we are at loss as how to deal with it to.
•    Anonymous said... My 18 yr old twins (especially since "Mom I'm an adult now) are the same......you can't give in to everything or you'll have chaos...as you know.....I pick my battles.....Foul language at home ...(Only used to push my buttons)....I ignore.....
•    Anonymous said... my daughter is the exact same way
•    Anonymous said... my family complained about my son acting this way too, finally I explained to them they are witnessing the disability. these kids see everything in black and white (rigidity), they are not able to be flexible so they come off as demanding and controlling cuz they simply can not help themselves. with alot of patience, there are ways of re-directing instead of simply tolerating it (there are good articles on this website). and the siblings without the disability can be held accountable and taught tolerance of the disability, but I realize that is easier said than done. good luck.
•    Anonymous said... There is a support group near me. I think you could find your local one via your doctor or specialist or just google and see if you get anything ?
•    Anonymous said... We have the same issue with my 14 yr old . We walk on eggshells around her and don't try to punish her because I know what will come if I try that .. She is mean to us and her famous line is always .. What I didn't do anything wrong.

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