Expert: Dr. Sharon A. Mitchell - 4/23/2007

Question
We are really needing some kind of help with our 13-year-old son who
has hfa and fetal alcohol effects. Perhaps it is the teen thing,
but he is getting pretty out of control when he gets frustrated that
things can't go his way. It happened a couple of times yesterday.
When he was younger he was also able to keep himself occupied and
busy, but he seems to have lost that ability. He has one good
friend (whom I suspect has Asperger's) and the two boys share a love
of movies and pretend play about movies. Our son spent a good part
of the day on Saturday at his friend's and they both had a ball. It
was not convenient for our family or the other family that the boys
play again yesterday. Our son cannot readily see/understand/care
about the needs of others and just lost it. He slapped me, he
knocked a picture off the wall breaking the glass, shoved everything
off the computer desk, and started trashing his room. His resource
room teacher/family friend intervened, took our son out for a bit
and got him back on an even-keel.

When my husband got back from taking our daughter back to her
residential placement (3 hours away) he was very tired and was not
up to reading to our son when he asked. Again, our son lost it and
dumped out three big plastic Rubbermaid-like storage bins of
spring/summer clothing I was preparing to sort for the season. My
husband, finally worn out by our son's behavior, gave in and read to
him. We can't always do what our son wants done at the time he
wants it. How can we teach him???

Any advice?

Sue


Answer
Sue,

How frustrating for all of you.

It could partly be a teen thing as the hormones of adolescence come into play. As part of the process where young teens begin to differentiate themselves from their parents, they often show rebelliousness.

But on top of the normal teen crises, your son has both autism and FAE which complicates things. There are quite a few characteristics both diagnoses share and you can use this information to help plan your strategies to help.

Let's look at the factors that may make things difficult.

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 ASD (or FAE) 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 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.

Both kids with autism and kids with Fetal Alcohol 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. 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 and FAE. 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 and FAE. 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 and kids who are effected by intra-uterine exposure to alcohol 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 or FAE, 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's 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. An Occupational Therapist, if you small books by Brenda Smith Myles you might consider. 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://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_...)

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. Seeing a doctor, counselor or psychiatrist to rule out depression would be a good first step.

You're right that you can't always give in 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 wants. 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 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
www.autismsite.ca