Expert: Dr. Sharon A. Mitchell - 12/4/2008

Question
My son is 13 years old and autistic, he has had wrap around support since age 4.  He is on medications and see's a doctor at least once a month for them.  In the last 12-18 months he has got more and more aggresive, hurting me, his mom, sister and TSS.  He tends to get aggresive when presented with something he doesn't want to do, have done or have happen.  He is verbal but does not talk about his feelings.  In the past year he has caused me to fall down the steps from second floor to first twice.  drew blood by biting his mom's arm, hurt his sister by hitting her with the kitchen table, caused me to have an asthma attach after hitting me in the face.  They are a few of the incidents of late.  It seems to us that I am his favorite target for his anger.  On Thanksgiving he was asked to help clean up before company, he didn't want to and he charged at me.  That is the most recent incident.  When he is hitting me I attempt to get him to the ground and hold him but I am asthmatic due to a service connected disability and he wears me out fast.  He is 5 ft 7 and 130 pounds, I am 5 ft 5 and 190 pounds.  His support team is working with us on de-escaltion plans, but they don't always work and I tend to get hit.  I asked to be trained to restrain him but for legal reason the wrap round agency will not train me.  I feel I am left to my on means to prevent him from hurting himself or us.  Can you suggest anything that may help?

Answer
How frightening to think that this child you have loved and raised might possibly seriously hurt someone. But lucky for him, you sound like a parent who is tackling this problem head on and you've gathered around you a team to help.

I feel for you and the way your household must be on tenterhooks, waiting for the next incident. It's disruptive for everyone and not a state conducive to learning for your son.

Unfortunately, it's not a rarity for a young teen with autism to show aggression. It could partly be a teen thing as the hormones of adolescence come into play. Also, as part of the process where young teens begin to differentiate themselves from their parents, they often show rebelliousness. Not that that's acceptable or does not need to be corrected, but your family is not alone in facing this difficult situation.

I'd look first to his medications, as you have been doing. It's great that he sees a physician monthly. Sometimes in the adolescent years either a growth spurt or the hormones of puberty seem to alter medications that once worked fairly well. It might be a long, tedious process of getting them tweaked just right to fit the current situation, although it's hard to have patience when you feel that your home may be under siege.

What information exactly to do present to the doctor each month? Do you describe the behaviors that stick out most in your mind? Sometimes it helps to write things down and to be as objective as possible when describing the behavior. I know that this is not an easy thing to do when it's your own family involved in these highly emotional, frightening scenes. Sometimes a written form can help to help organize your thoughts and present your findings in an consistent fashion.

One simple way of doing this is to divide a paper into four columns. On the thinnest, left hand column goes the date. Title each of the next three columns A (for Antecedent), B (for Behavior) and C (for Consequence). When each incident happens, even if does not resulting all-out aggression, use this sheet. It may be easiest to start with the B column first and objectively write down what you observe. The go back and do column A, writing down what your son was doing before the behavior occurred, what you think may have triggered the incident, etc. Under the C column, list the aftermath or consequences that resulted, such as your son being sent to his room, loss of a privilege, etc.

By using such sheets, you may begin to see a pattern of what triggers the aggression, when it happens, etc. And you might also be able to detect just what he's getting out of the behavior.

Here's some information on conducting a functional behavioral assessment:

http://www.autismnetwork.org/modules/assess/fba/index.html

http://www.polyxo.com/fba/

And there are some sample data collection sheets here: http://www.polyxo.com/documents/

As well as aiding your child's doctor, collecting such information may also help your team devise an effective plan.

Suggestions to ignore the behavior as it begins often work although not immediately. But I imagine you've been trying this for a while. Ignoring the behavior is easier when it's just annoying or just noise. But when there is the threat of harm to others or the child himself, safety becomes the major issue. And loud, threatening or violent outbursts can interfere significantly with the well-being of the other family members.

Have you considered a point system where he earns reinforcers. The idea is often sound. But some kids are not at a point where they see the connection between the points and an actual reward they'll receive later. For such kids, the reward needs to be tangible (preferably something he can feel or taste), not just a check mark or sticker on a paper.

And the reward need to be fairly immediate so that the reward easily becomes linked with the desired behavior. For instance, giving a reward for having a good morning may be too long a time interval. Try breaking his day into smaller chunks, like one period or a half hour or even as short as ten minute intervals.

Make the reward something he likes. At each short interval he could have a small reward. If he has the concept of waiting or building towards something, he could receive a larger reward at noon then another before going home. Or his parents could provide a reward at home.

You could consider a daily card that tallies how many small rewards he received throughout the day and these would serve as points building toward a larger prize.

To begin with, keep the time interval small and make sure he is successful. You may even have to "catch him being good", immediately giving him his reward whenever he displays the behavior you want. Gradually the interval can be lengthened. Ideally, he'll go from short time-spans to a full-day, and from depending on external rewards to working just for praise from the adults, then on to doing what's expected just because it feels good and makes him proud of himself.

Of course, the goal is to catch small negative behaviors before they become larger so that there never are negative outbursts. That's not always so easy to do though.

What sort of signals does this boy send before an upset? Can you read his body language to know when he's becoming upset?

What sort of things throw him off? Are the episodes related to school work? To how he's feeling physically? To the amount of sleep he's had? To what he's wearing? To who is near him?

Kids with autism benefit from routines. It helps them feel calmer and to know what will be happening. That's why your specialist helped set up schedule. It's not enough to have a nice schedule on the wall. He needs one on his desk or in his books that he can refer to freely. To begin with, he'll need an adult to go over the schedule with him several times each day to let him know what will happen in the next period and what will be expected of him.

Before we talk more about strategies, it might help to look at what might be behind the aggression you're seeing. Let's look at the factors that may make things difficult for a young teen with autism.

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.

- it can be equally as difficult for someone with ASD 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

- after outbursts such as you describe, you may be exhausted but the intensity of your emotions may not have registered on your child, so he may not show the remorse you think he should feel

- when a person has difficulty gauging emotions and does not pick up 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. Their body may not register sensory information in a typical fashion, being either over or understimulated in each sensory mode. You mention using massage which can be helpful in some instances. If you have access to an Occupational Therapist, she may be able to help you determine which sensory strategies might help calm this boy. 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 ASD. 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 ASD. They may have trouble:

- telling time

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

- it may be hard for them to find things because they have no organized storage system

- they 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 both autism 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 autism, 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 student 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 this boy 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 his home. Those are 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 rules. Make them clear and unequivocal. Post them in many, conspicuous places. It won't be good enough to tell him 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's has written a couple helpful books on using visuals to help with behavioral issues:

- Solving Behavior Problems in Autism http://tinyurl.com/649ulh

- Visual Strategies for Improving Communication: Supports for School and Home http://tinyurl.com/68zbgs

It might surprise you to learn just what a difficult time this child 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 this boy's issues may have a sensory basis. An Occupational Therapist, as I mentioned previously may be enormously helpful. Ideally, you want this boy to learn to calm himself. I'm a bit concerned with you massaging him. If he's prone to lash out, such intimate contact could put you in a dangerous position. Also, given his age, less physical contact would be preferred. Again, an OT may help with self-calming techniques.

There are a couple small books by Brenda Smith Myles on this topic that you might consider buying or borrowing. Don't worry about the word "Asperger" in the title; both books apply to kids on the autism spectrum.

- Asperger Syndrome And Difficult Moments: Practical Solutions For Tantrums, Rage And Meltdowns http://tinyurl.com/5epqa7

- Asperger's Syndrome and Sensory Issues: Practical Solutions for Making Sense of the World http://tinyurl.com/5fbg53

Are you familiar with the concept of social stories? They are a way of letting a child 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, analyze it visually and present more appropriate solutions for next time. (http://www.amazon.com/Comic-Strip-Conversations-Carol-Gray/dp/1885477228/ref=pd_...)

Unfortunately, it's not unusual for a young teen with ASD to suffer from depression. While in adults, depression usually comes out a sadness, in kids sometimes the most noticeable sign is anger rather than just being down. The anger can come out as verbal or physical aggression. Sometimes when young people are depressed, they are greatly helped by medication that better balance out their brain's neurotransmitters, resulting in more even moods. Continuing to see a doctor, counselor or psychiatrist is a good first step. For some children, it's necessary that they spend a period of time in a hospital where they may be taken off all medications, closely observed then new medication protocols tried until it's felt that they are at an optimal level.

You're right to be concerned about the behaviors your son is showing. And now is the time to tackle them, rather than let them continue and become habitual. As well and the emotional and physical safety of yourself and your family, your boy could face possible legal issues if he continues to be aggressive.

You can help him to delay gratification, consider the needs of others, follow routines and expectations and to think things through before he reacts. It won't be perfect but if definitely can 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 this young man to learn to manage his behavior.

My best wishes go with you and your family during this trying time.

Sharon A. Mitchell, B.A., B. Ed., M.A., Ph.D. candidate,
http://www.autismsite.ca