“Our 11 y.o. grandson is a high functioning autistic child and is totally disruptive and seems to want to control everything and everyone. I don't want to give into him but need some suggestions because it is upsetting all of us. The whole family revolves around him and his wants. It even influences his sister - and the sister imitates this dreadful behavior. PLEASE, what can we do?!”
You need to understand what your grandson is thinking, how he interprets what is going on, and how his 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 make a big difference.
To help you determine the reasons why your grandson acts the way he does, you should ask yourself the following questions:
- 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.)
- Is he misunderstanding what is happening and assuming something that isn't true? (Misinterpretation)
- Is he expecting perfection in himself? (Black-and-white thinking)
- Is he exaggerating the importance of an event? There are no small events, everything that goes wrong is a catastrophe. (Black-and-white thinking)
- Is he blaming you for something that is beyond your control? (He feels that you must solve the problem for him even when it involves issues you have no control over.)
- Has he made a rule that can't be followed? (He sees only one way to solve a problem; he cannot see alternatives.)
- Does he see only two choices to a situation rather than many options? (Black-and-white thinking)
- Does he need to be taught a better way to deal with a problem? (He does not understand the way the world works.)
- Because a situation was one way the first time, does he feel it has to be that way always? (Being rule bound.)
Realizing that your grandson will not be a good observer of his behavior is your first step. The high-functioning autistic (Asperger’s) 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 can’t 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. High-functioning autistic 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. You must deal with rigidity and replace it with flexibility early on in your plan to help your grandson. Flexibility is a skill that can be taught, and you will need to make this a major part of your efforts to help him.
Understanding your grandson involves knowing the high-functioning autistic characteristics and how they manifest themselves in everyday behaviors. How does your grandson 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:
Reasons for Rigidity—
- Transitioning from one activity to another. This is usually a problem because it may mean ending an activity before he is finished with it.
- The need to engage in or continue a preferred activity, usually an obsessive action or fantasy.
- The need to control a situation.
- The need to avoid or escape from a non-preferred activity, often something difficult or undesirable. Often, if your grandson cannot be perfect, he does not want to engage in an activity.
- Other internal issues, such as sensory, inattention (ADHD), oppositional tendency (ODD), or other psychiatric issues may also be causes of behavior.
- Lack of knowledge about how something is done. By not knowing how the world works with regard to specific situations and events, the autistic youngster will act inappropriately instead.
- Immediate gratification of a need.
- Anxiety about a current or upcoming event, no matter how trivial it might appear to you.
- 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.
- A misunderstanding or misinterpretation of another's action.
Not Understanding How the World Works—
Your high-functioning autistic grandson 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 grandson 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 high-functioning autistic youngster tries to impose his own sense of order on a world he doesn't understand.
The high-functioning autistic 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 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 high-functioning autistic 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 grandson 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 high-functioning autistic 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 very bright teenage boy on the spectrum 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 high-functioning autistic kids, life tends to be divided into two categories – preferred and non-preferred activities. Preferred activities are those things your grandson 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 grandson 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 grandson 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 high-functioning autistic 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 high-functioning autistic 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 grandson 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 grandson 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 grandson 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 grandson, 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 grandson's first reaction may be 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.
Behavioral Manifestations of Anxiety—
- 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.
- Tending to conserve energy and put forth the least effort they can, except with highly preferred activities.
- Remaining in a fantasy world a good deal of the time and appearing unaware of events around them.
- Reacting poorly to new events, transitions, or changes.
- Preferring to do the same things over and over.
- Lecturing others or engaging in a monologue rather than having a reciprocal conversation.
- Intensely disliking loud noises and crowds.
- Insisting on having things and/or events occur in a certain way.
- 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.
- Having a narrow range of interests, and becoming fixated on certain topics and/or routines.
- Eating a narrow range of foods.
- Displaying a good deal of silly behaviors because they are anxious or do not know what to do in a situation.
- Demonstrating unusual fears, anxiety, tantrums, and showing resistance to directions from others.
- Demanding unrealistic perfection in their handwriting, or wanting to avoid doing any writing.
- Creating their own set of rules for doing something.
- Becoming easily overwhelmed and having difficulty calming down.
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 a high-functioning autistic 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.
Your grandson's cognitive difficulties may 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, you 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.
Related information can be found here:
==> Parenting Children and Teens with High-Functioning Autism
• Anonymous said… Behavior Modification, counseling, and this may require inpatient therapy. It will be short term. It helped with my 17 year old. We started at age 3.5 years old. The behavior will change for the better or will continue to decline.
• Anonymous said… bdoes this sound familiar? This is a very interesting read, especially the bit about OCD. x
• Anonymous said… dreadful behavior is from the adults- he's 11 and sounds like being at the house with people who "won't give in" is stressful.If he had a physical aliment, you would adjust so why, when he is 11 are you just beginning to ask questions about how to help. My kids will not go to people's homes (including their grandfather) because of the lack of empathy of medical issues (physical as well). Although it is not clear what the parents are doing, it's clear you are blaming a child for the family wrongs. What have you done to make him feel welcome, calm, and to be interested in him ? What can you do? Stop judging. Read. Learn. Empathize. Help.
• Anonymous said… feel like the author has been spying on my son!! 😁 Very good article.
• Anonymous said… Get a trampoline. We used to put our son on it before and after school to burn up excess energy.
• Anonymous said… I feel you, things eventually settled down with my son, but I think it's such a strange age and everything is changing all around, some of his peers may be going into puberty, there's the transition to big school, and possibly even hormonal changes in him. I used to battle with my son, but then I realised a lot of his behaviour was due to anxiety, hence the need to control, and the massive meltdowns. Try to be patient, and if possible try to allocate time to spend alone with your daughter, and spoil her a little, my nt child acted up a lot because of her brother having all the attention for what she saw as bad behaviour. Also, try to get in on his special interest, it will help you to have a better relationship with him so you can discuss other things, I know it's tedious hearing every tiny minute detail of something which you have no interest in (good god help me, I don't even care about the lore of the elder scrolls, but I gotta try so he knows I actually care about what's important to him) Also, communicate with him on a more adult level, my son hated being spoken to like a child, even though he was one, he sensed people spoke to him differently to how they speak to their equals. It really helps him to be treated like an adult, and I think it was around 11 when I decided to treat him more like an equal, he's 13 and quite self-responsible now, a thing I thought I'd never see
• Anonymous said… I would recommend social thinking counseling -- probably individual and group. Also check out the books from Michelle Garcia Winner, the social thinking expert for kids on the spectrum. She has books for kids and teens that are great.
• Anonymous said… I'm probably not telling you anything that you don't already know...he acts this way with you and your family because he's had to hold it together ALL day at school. Keep setting boundaries, get connected in your area with families that are going through a similar journey...be kind to yourself.
• Anonymous said… Intense behavior modification. Tools to help them calm triggers, recognizing triggers, group therapy, counseling, environment has a strict structure, family therapy, social skills, empathy, and assessment of current diagnosis. Also, the child will continue to attend school. It can be two weeks to 6 months. It depends on insurance and program.
• Anonymous said… Is there a Spanish versión of this article!! Live in Spain and would love my sons School to read this as it sums him up! Too much for me to translate..
• Anonymous said… Please tell others when referring to a child on the Spectrum that "____is an 11 year old child with ASD" The child first please! I am a 30+ year Special Education teacher with Masters in Special Education. I teach in a self-contained classroom with some amazing students who happen to live and learn with Autism. The most effective programs and the most functional and long term learning that I have used and individualized education around is based on social-emotional learning. The most effective strategy is consistency across all of the child's environments and an at-home positive behavioural support team that consults across school and home.
• Anonymous said… Poor kid has to behave at school and can't hold it together 24/7. You have to have lots and lots of positive parenting, rules... and stick to them ( which can be v hard and tiring ) but it is possible for things to improve. If you as the parent are in a relationship then be kind to each other ( when you probably don't want to always) and talk to each other. Remember why you're together in the first place and when things seem bad stick together Children like this can cause immense strain on a family unit.
• Anonymous said… Sounds just like my 8 year old.
• Anonymous said… This all sounds very similar to my experience (except that I am likely to hear more about "game theory" than "Lore of the elder scrolls" :) ). My younger not son also acts out because of his brothers behaviour.
• Anonymous said… This article described my 10 yr old daughter exactly. I related to almost everything in it.
• Anonymous said… We can't figure out what triggers my six year old son. He wakes up, and has the immediate desire to wake everyone, even if it means hurting others to do so. He instantly goes after his three year old brother every time he's near, and separating them doesn't work, because my six year old is terrified to be alone. He's seen three different councilors, a psychiatrist and 2 neurologists all in the last two years. We've tried 9 different meds to try to help calm his hyperactivity, and nothing works for him. He's an angel at school and during his extra curricular activities, but with us, he's a monster. We don't know what to do anymore.
• Anonymous said… We have two trampolines. Nothing affects his behavior, no matter what we do. He's like this on weekends, all through the summer, and during every break from school. It's literally unbearable. He laughs in your face as he's going after his siblings. He has no fear of consequences, and there's never been an effective form of punishment for him. I completely understand why parents of these children get divorced. They need a break.
• Anonymous said… What do theu do at inpatient therapy
• Anonymous said… You have to be really strong...as do all adults who have some childcare responsibilities for this boy....there are no days off as far as rules go... firm but fair and eventually you will get there....I've beeen through it... sending you positive vibes...
• Anonymous said… your leading with child first, label second is much appreciated. As my own parenting journey progresses I prefer to say "my son is on the Autism Spectrum", or "my son has an Autism Spectrum condition"... I have found I dislike applying the term "disorder" at all, although there is certainly that aspect to it, but i don't want it to be the only thing that defines him...
* Anonymous said... great read, wish I had known all this when my daughter was much younger. absolutely frustrating to know that she was 'different' by the time she was about 2 but had to wait til she was 12 for the correct diagnosis, the benefit of early intervention is lost for most girls as they mask so much socially..... puberty and autism is a winning combination.... challenging behaviours and the 'undiagnosed' co morbidity of a mental illness makes every day an adventure thats for sure.
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