Expert: Dr. Sharon A. Mitchell - 11/4/2007

Question
Hi Sharon,

My son has just recently been diagnosed with aspergers, I have just begun looking for answers.  I don't have any doubts that he has AS, but at the same time, he is so high functioning sometimes it IS hard to believe.  Mainly his lack of social skills and following the rules keeps him in trouble at school.  The school has special help in place for him, such as time to cool off, safe place to go, etc.  He has made straight A's for the first time (he's now in 3rd grade).  I guess i'm just fearful that his behavior problem doesn't seem to get better and I'm worried that despite his intelligence he will fail in school as he gets older.  I know there is no way to predict this, but as a rule, do most high functioning children with AS learn to cope with these emotional outbursts as they get older?  I've heard that boys with AS have higher levels of testosterone.  Does this increase even more as teens?  sorry for the lengthy email...

Answer
Good morning Krissa,

I like your question. It makes me think that your son will do well.

Often when their child is newly diagnosed, parents cope by wanting people to see the best in their child. With a boy with Asperger's, the most noticeable place where he can shine is in his intellectual ability. Parents want people to notice that he's smart, despite any other difficulties.

There are many very bright adults with AS and high functioning autism who spend their days and nights in their parents' basements. They're unable to hold down a job or succeed at college. These people, despite their ability levels are unable to manage the other aspects of their lives.

You're already worrying about this, which is very good. I firmly believe that it doesn't matter how smart you are, no matter what your high school marks or SAT's, if you can't manage your life, what's the point? Lack of behavioral control will interfere more with life than will a C average.

But your boy has just been diagnosed and already you're concerned about this. For that reason alone, my guess is that things will work out well. Your son is lucky to have such a mom.

That is not to say that there will not be rough spots along the way. It won't be easy for any of you, but it's entirely possible that when your son is 20, he'll be living on his own, away at college or holding down a job.

What the school has set in place is excellent. I like the fact that they're being proactive. Teaching him that it's better to leave and go to a safe place rather than blowing up in public is a good life skill to begin working on right now.

Most 8 year old boys are not that intuitive and in touch with their emotions. A child with AS will have even more difficulty with this.

To begin with, your son may need help in knowing when to go to the safe place. He may well not recognize when his frustration is building until he's ready to erupt. His teacher could work on a signal with him, such as pulling her ear, tapping on his desk, placing a green card on his desk, etc. to give him the message that she sees he's upset and he needs to leave the room to go cool off. You want the cue to be subtle so that the other students don't necessarily know what is going on. Afterwards, she can praise him for responding to well to her cue.

You could use the same cue at home when you see that you're son is possibly headed for a melt-down. The consistency between home and school will help.

This type of cueing is external and needed to begin with because you can likely see trouble coming more easily than your son can. But your goal is for him to learn self-control, rather than him requiring an adult nearby to cue him.

Begin by explaining to him just how you know that's he's becoming frustrated or upset. This probably comes instinctively to you, but try to analyze what you see. He might show clues such as:

- his hands ball into fists
- he clenches his teeth
- he raises his chin
- his shoulders hunch
- the cords on his neck stand out
- his eyes narrow
- his head juts forward
- he rocks
- he mutters

Teaching him about these things is best done when he's calm, rather than in the moment of upset.

Rather than just explain to him how he looks when upset, show him. Mimic his facial expressions, have him copy them, stand in front of a mirror together and practice matching expressions. You'll need to do this over and over. Just think of how many times you might feel in a bad mood without stopping to analyze just what exactly is bothering you. This is hard for a child but not impossible. It's a process and something he'll need to work on for many, many years.

Is this going to be hard work on your part? Yep. There's no getting around it. Raising a kid with AS is just plain harder. But it's worth it. Picture the pride you'll feel when you visit your son in his own apartment; when he shows you his first pay check; when he graduates from college. You'll know that he could not have achieved these things if had not first learning to manage himself.

Hard though it might be, you'll have help. It sounds like you're off to a good start with your school. You're relationship with the school may sometimes be rocky. Just as at home you may get frustrated with your son and not know which way to turn, his teacher may at times feel the same way. Remember that you're on the same side and want the same things for your boy. Being human, you'll both feel exasperated at times. It helps if you can lean on each other and understand the other's views. The teacher has likely a couple dozen other children to attend to. You have your son at least sixteen hours a day.

At times he may hold it together at school and let it all out at home. Hard as it may seem to you, it's actually a good thing. Would you not rather he control himself in public and show any poorer behavioral choices at home where he knows he's loved and accepted no matter what?

It helps if you can understand where some of his behaviors might be coming from. Let's look at some of the reasons why he may respond in ways you're not liking.

Social understanding comes near the top of the list. This involves all kinds of things such as:

- being able to read nonverbal language - the facial expressions and body language of other people

- being able to accurately convey how you are feeling through your own body language

- Theory of Mind - many people with autism have trouble comprehending the fact that others don't think and feel the same way as they do. The person with autism may tend to assume that whatever is in his mind is also in yours. Then when you don't help him get what he wants, he's frustrated and believes that you are deliberately thwarting him

- it's also difficult for most people with autism spectrum disorders (ASD) to guess the emotion that another person may be feeling. When your husband came home, it would have been obvious to you that he was tired, but your son may well have been so focussed on his own ideas that his dad's fatigue did not register

- it can be equally as difficult for someone with Asperger's or autism to read his own emotional state. He may be able to label the emotions of happy or mad but little else in between and then demonstrate sadness or disappointment as anger. When he laughs at you when you discipline him, he may not actually be laughing or taunting you. Instead, what he may be showing may not match at all what he's feeling inside.

- after outbursts, you and your husband may be exhausted but the intensity of your emotions may not have registered on your son, so he may not show the remorse you think he should feel

- when a person has difficulty gauging emotions and does not pick on subtle clues, how to act in social situations can be a mystery. Think of how it would feel to be suddenly plunked down in a foreign culture where you knew none of the customs and what was expected of you. Dr. Oliver Sacks described this well in his book Anthropologist on Mars (http://www.amazon.com/Anthropologist-Mars-Oliver-Sacks/dp/0517174332/ref=pd_bbs_...). He describes Temple Grandin, a woman with autism, as viewing society as would an anthropologist observing life on another planet.

Kids with autism spectrum disorders frequently have sensory sensitivities, as you are finding out with your son. Their body may not register sensory information in a typical fashion, being either over or understimulated in each sensory mode. Sensory sensitivities can create these types of difficulties:

- a body not well regulated or at rest within itself

- cause an upset, unbalanced feeling and in such a state, it's easy to become overwhelmed and react

- increased sensitivity to noise, smells, touch, taste, lights, colors

- poor balance. Being less stable on his feet, such a person can on the defensive, ready to protect himself from a fall
- heightened sensitivity to touch where even a light, accidental brush can feel as if it's hurting

- poor awareness of where his body is in space

- poor awareness of how hard he is touching, how far his arm is reaching, how hard he is pushing or pulling

Weak executive functioning skills are common in kids with Asperger's, despite high intelligence. Picture yourself as the CEO of a large corporation. It's your job to figure out what needs to be done, prioritize these tasks, determine who should do what, when, etc. These are all executive functioning skills that make life hard for kids with Asperger's. The difficulty and frustration can be compounded because the child realizes that he is smart, yet he has more trouble than others around him. He may have trouble:

- telling time

- understanding the passage of time (that internal clock most of us develop) so that he is often late or are startled when you tell them it's time to go or time to clean up

- it may be hard for him to find things because he has no organized storage system

- he may become fixated with minutiae rather than focus on the big picture

Memory may also be an issue. You may meet a child who can tell you all kinds of esoteric details about his special interest but be unable to tie his shoes or remember where he put his lunch bag. When a child finds it hard to make sense of his world, when he can't see the forest for the trees, life can be scary. It is not a predictable place where you can guess what's going to happen next. Most of us store things in our memory in organized groupings, making it easier to retrieve these memories when needed. Many people with autism store memories in an overly compartmentalized fashion, not relating one event to the other.

Donna Williams, an articulate woman with autism explains this well in her book, Somebody Somewhere (http://www.amazon.com/Somebody-Somewhere-Donna-Williams/dp/1853027197/ref=pd_bbs...). When a child has this problem, he may learn a coping strategy in one situation but have difficulty or forget to apply it when a similar situation crops up.

Most kids with autism and Asperger's tend to be stronger visually than auditorally. That means that they take in information better that they see than what they hear. Unfortunately, many of us as parents and teachers are talkers. When talk to explain, we talk to connect. And when upset, we tend to talk even more.

A child with Asperger's, even one who is highly verbal, when under stress will have increasing difficulties understanding what it is you're saying. When he does not respond appropriately, likely you talk even more, which actually compounds his stress, rather than decreasing it.

In such situations it's better to talk less, far less than would be your want. In fact, ideally talk little if at all. During the upset stage, your words will do little rather than aggravate the situation. Instead, when you do speak, keep your sentences short and blunt - one word utterances would be best. Couple those words you do use with visuals or hand signals. Remember that your child will take in information better that he sees rather than what he hears.

But what would make you happiest is to never get into these situations in the first place, of course. And it's important to work at this because your son is only going to get bigger and stronger. He could hurt someone, either intentionally or accidently. He could find himself in legal trouble. He could wear out his welcome with friends, at school and even in your home. Those extremes, but with increasing, uncontrolled aggression, it is possible that things to go to such lengths.

Because of the difficulties many ASD kids have making sense of the world, they often appreciate having rules and expectations set out clearly for them. They often respond well to, "The rule is..." Try it. It's amazing how well such a simple things can work.

Establish house rules. Make them clear and unequivocal. Post them in many, conspicuous places. It won't be good enough to tell your son the rules or discuss them - they have to be visual. You might consider doing the same thing with the consequences you've set up for rule infractions. When you feel an incident may be building, rather than issuing verbal warnings, tap on the posted rule.

Linda Hodgdon has written a couple helpful books on using visuals to help with behavioral issues:

- Solving Behavior Problems in Autism (http://www.amazon.com/Solving-Behavior-Problems-Autism-Strategies/dp/0961678623/...)

- Visual Strategies for Improving Communication: Supports for School and Home (http://www.amazon.com/Visual-Strategies-Improving-Communication-Practical/dp/096...)

It might surprise you to learn just what a difficult time your son has in reading the emotional state of others. There are a couple free games you could try with him. You'll find them at:

http://www.do2learn.com/games/facialexpressions/index.htm

http://www.do2learn.com/games/feelingsgame/index.htm

Some of your son's issues may have a sensory basis. It's good that he's seeing an Occupational Therapist, but if you want to learn more about this and how to help your son, there are a couple small books by Brenda Smith Myles you might consider:

- Asperger Syndrome And Difficult Moments: Practical Solutions For Tantrums, Rage And Meltdowns (http://www.amazon.com/Asperger-Syndrome-Difficult-Moments-Practical/dp/193128270...)

- Asperger's Syndrome and Sensory Issues: Practical Solutions for Making Sense of the World (http://www.amazon.com/Aspergers-Syndrome-Sensory-Issues-Practical/dp/0967251486/...)

Are you familiar with the concept of social stories? They are a way of letting your son know what is going to happen and what is expected of him. Linguisystems has a whole series of ready-made social stories appropriate for young teens (http://www.linguisystems.com/searchResults.php?action=search&search_term=pdd).

Going along with social stories, Carol Gray has developed Comic Strip Conversations, a way to go over the situation that happened, analyse it visually and present more appropriate solutions for next time. (http://www.amazon.com/Comic-Strip-Conversations-Carol-Gray/dp/1885477228/ref=pd_...)

Here's a site with some other ideas for help in disciplining your child: http://www.autismcommunityconnection.com/files/autismcc_responds_agg_behavior.pd...

Tempting as it is sometimes, you can't always give in to what your son wants. And it wouldn't be healthy for him even if you did because that's just not the way the world works. You can teach him to learn to delay his gratification, to take more consideration or the needs of others, and to think things through before he reacts. It won't be perfect but if definitely can and will be better.

By understanding the ways in which his brain processes information and using strategies such as visuals and clear-cut rules, you can help your son to learn to manage his behavior.

Sharon A. Mitchell, B.A., B.Ed., M.A.
www.autismsite.ca