Expert: Dr. Sharon A. Mitchell - 7/21/2009

Question
My son is 7 years old is triple diagnosed with PDD NOS, ADHD and Anxiety Disorder NOS. I have been advocating for my son since he was a year old. He was diagnosed two years ago. He did not use to talk but speaks very well now! (Years of Speech and Language Therapy)I can not take him into public places, I have 4 other children and none of us know how to deal with him effectively. I have been taking him to many specialists including Pediatricians,Psychologists, Neurologists and many other therapists. I live in Florida and there is not much Behavioral help here. I am in desperate need of advice, I am the only person he really likes but he can be very mean and aggressive to me and my other children. I guess what I am trying to ask for is any and ALL of the help you are willing to give?
Thanks so much in advance,
Desperate Mom in Florida

Answer
You sound like you really have your hands full. If you've been advocating for him since he was one, you obviously know to go with your instincts.

Congratulations on the fact that he's now talking. You must have been so pleased with that progress.

Although the three labels  of PDD-NOS, ADHD and Anxiety Disorder can sound scary, in fact most people with an autism spectrum disorder (PDD-NOS falls into this category), have attentional issues and varying degrees of anxiety. When you think about the Triad of Impairments inherent in autism, it's easy to understand how these kids are anxious and have trouble keeping focused.

If you're familiar with the Triad, then please skip the next couple paragraphs. If you don't know about them, I'll give a short explanation.

1. The first is in the area of Executive Functioning (EF). It helps to think about EF as if you're the CEO of a large corporation. You have to plan for the near and distant future. You have to keep many things in mind at once. You have to prioritize, deciding which things must be done first, and the order the rest should come in. You set and meet deadlines. You need to determine which tools are needed to do the job and who will perform each function. These are all examples of EF skills. Working memory is involved in EF, as is sustaining attention, shifting attention when needed inhibiting impulses, etc. Most people with autism spectrum disorders (ASD) are weak in EF.

You can find lengthier explanations of EF at sites such as http://www.aboutkidshealth.ca/News/Executive-Function-Part-Five-What-happens-whe... and http://www.co-brass.com/articles_executive_function.htm

Think about a child in school and how many EF skills are called for during the day. Would it not be easy to become overwhelmed and anxious?

2. Central Coherence involves paying attention. With good Central Coherence, you can be in a noisy, confusing environment, such as a shopping mall but without consciously doing it, your brain weeds out the extraneous stimuli and you only concentrate on what you need to. That is, if you have good Central Coherence. If you're like most people with an ASD, this is a troublesome area for you. Some adults with ASD say it's like everything comes at them with the same intensity - the hum of the air conditioner, the buzz of the fluorescent lights, the shuffling feet, the dropped pencil and the teacher's voice.

If you're interested, you can find out more about Central Coherence here http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1693121

3. Theory of Mind (ToM) is in a way, mind reading. People with autism have a difficult time figuring out what another person is thinking or feeling and often do not realize that others think or feel differently than they do themselves. They may often presume that others know what's in their minds. If you misunderstand or don't comply, the person with ASD may assume you are purposely thwarting them, when in actuality you have no idea what they want.

Here's some links to further information on ToM http://www.autismresearchcentre.com/docs/papers/2001_BC_normdevelopment.pdf and http://en.wikipedia.org/wiki/Theory_of_mind

It sounds like behavior is your main concern right now.

There are some neurological reasons for some of the outbursts your son may be having and they're related to the limbic system, a collection of structures in the brain. The limbic system is often thought of as the seat of our emotions and is responsible for our fight, flight or freeze reactions.

Emotions are at the fore in two years olds. Kids this age can go from giggling to crying. They react to the world emotionally and excessively. But as we mature, our brains develop more neuronal connections that allow input from the world to be filtered through our cerebral cortex so that we can pause and reflect, put things into perspective, relate what's happening right now to past experiences and the strategies that worked for us last time.

Unfortunately for kids with autism, their brains do not develop these neural connections at the same rate or to the same extent as do other kids their age. This means that they continue to operate out of their fight, flight or freeze reactions far longer.

Kids with autism have a great deal of difficulty making sense out of their world. When you're in a confusing, uncomfortable or scary place, you cling to what you know. That's a big part of the reason why kids with autism can become so rigid, wanting things done in exactly the same way. Then they can predict what will happen next, what's expected of them and they know that they'll be safe.

Think what it would be like if you were to tour fourteen European countries on a ten day trip. You'd be whirling around in strange cultures, trying to operate in strange languages. You might be excited but you're be exhausted. In that situation, how would you feel about your schedule or itinerary? My guess is that you're cling to it. And you'd want to stay near your tour guide. You'd want to know what's coming next, where you'll eat, where you'll lay your head, etc.

Well, that's how life can feel for a child with autism.

Your son may just become comfortable doing something then the adults in his life insist that he change activities or put on his coat and go somewhere. YOU may certainly know where he's going next, what will happen to him there and what will be expected of him. But chances are, HE doesn't know any of that. All he'll know is that you're pulling him out of his comfort zone. And even if this is a transition that he's done over and over again, he may not be making that connection since this is difficult for kids with autism, especially when we consider the Triad of Impairments.

Now, I'm not in any way implying that you should not expect him to change activities or do as he is asked without a fuss. That's life and he needs to learn to do that. But it helps if you can understand what it's like from his perspective.

Back to our European vacation. I'd bet that during that hectic trip you would guard two things - your wallet and your itinerary. You can help your son by supplying him with a tool that's similar to that vacationer's itinerary. I'm talking about a schedule and preferably a visual schedule.

When I see kids with autism spectrum disorders who are having behavior difficulties, I've found that adding visuals is the single, most effective tool to help.

You may have found that when he's upset, talking to him does not do much good and may even make things worse. That's because people with autism have weaknesses in auditory processing. While their hearing may be just fine, auditory processing involves not just listening but making sense of the words, then figuring out how to act on them. Auditory processing is a harder task in noisy or confusing situations or when under emotional duress.

When it's time for a transition, rather than telling your child, try showing him with a picture what it is you want him to do. The picture need not be elaborate or detailed. I've found that kids are trusting - do a stick figure sketch, tell the child what it represents and chances are he'll believe you. Showing rather than telling helps get the information across. Most kids with autism have stronger visual than auditory skills.

But backing up a bit further, I'd suggest starting your little guy's day by going over a visual schedule of how you think his day will look. First you'll have breakfast, then get dressed, then go to the park, then have lunch, etc. But rather than just talking about it, show him. Tape the day's schedule to the fridge door so he can refer to it whenever he wants.

There's a website I really like at http://www.do2learn.com/ Here you'll learn more about how to make visual schedules and just why they're so helpful. And, best of all, there are free pictures, grids to use to make your schedules and lots of helpful hints. Parts of the site are free and some require a subscription but the free parts will give you lots of information to get you going.

I'd go even further with visuals. On his bedroom wall you could tape the order in which you'd like him to put on his clothes. You could also label (with words or pictures) things in his bedroom that will help him organize and tidy his room. In the bathroom, have a picture list of what he should do there, like brush his teeth, wash his face, etc. Beside the back door have a list of what he needs to put in his back pack before leaving for school. Another set of visuals can remind him of the chores he needs to do. A picture of a place setting will show him how to set the table.

For some kids, actual photos work better than line drawings but you'll need to experiment to see which work best for your family. As he gets older, you may wish to switch to the written words rather than the pictures but for now, I'd suggest sticking to pictures.

There are a few other factors that may be influencing your child's behavior. Young children do not have a good sense of time. This is especially so with kids with autism. Plus, often children with autism have the ability to hyper-focus, concentrating intently on what is interesting them.

So for your son, he may have been intently playing with Lego for half an hour but he may have no idea how much time has past; he's just having a good time. Then you go and interrupt him to say he has to leave now. He's not going to be a happy camper about leaving his favorite toy. Unfortunately, sometimes he just has to go when he's told to.

Rather than interrupting him to say he needs to leave right now, try giving him a ten minute or five minute warning. Show him the picture of what it is he's to do next. Some kids respond well to visual timers. You could set a visual timer for ten minutes. That length of time will show up red on the clock then the amount of red showing will decrease as the ten goes by.

Here are a couple sources where you can purchase visual timers:

http://www.autismstuff.com/teaching/timers.htm

http://addwarehouse.com/shop-bin/sc/productsearch.cgi?storeid=*10dac219ff07d6a02...

The first site above also has a wealth of information on the how and why of using visuals.

Another tool for you to try (along with, not instead of visuals) is social stories. A social story lets a child know what's going to happen and what's expected of him. The sites below have some ready-made social stories and give you directions on how to make your own:

http://www.polyxo.com/socialstories/

http://www.adders.org/socialstories.htm

http://www.thegraycenter.org/

If you're interested in books on visuals or on social stories, here's a few I like:

Visual Strategies for Improving Communication : Practical Supports for School & Home (http://tinyurl.com/6q2n9r)

Making Visual Supports Work in the Home and Community: Strategies for Individuals with Autism and Asperger Syndrome(http://tinyurl.com/5m3mtc)

The New Social Story Book : Illustrated Edition (http://tinyurl.com/6ee8jw)

The Social Skills Picture Book Teaching Play, Emotion, and Communication to Children with Autism (http://tinyurl.com/5dyvlm)

Despite all these autism factors that may be influencing your boy's behavior, there is another point to consider. He's a kid. Any child can be contrary at times and much prefer to do just what he wants to do, autism or no autism.

While it's sometimes difficult to weed out the "won't" from the "can't, if you use visuals, give the child ample warning that a transition is about to occur, practice the transition and are sure that he know what he is to do, then perhaps the current tantrum is more of a "kid" thing than a result of having autism and you can treat the situation behaviorally. I'd predict that this will happen less and less though once you've incorporated the use of visuals and schedules into his daily routine.

Some of his unwanted behavior is likely anxiety-based. And that anxiety may stem from sensory issues, difficulties he's having processing information or difficulty understanding social situations.

Discipline can be very difficult. And frustrating. But another mother once told me, "Just because he has autism doesn't mean I have to let him be a brat." Blunt, but the sentiment is sound.

You're already thinking along the same lines, as you are concerned about stopping these violent episodes. Sometimes, though the things that would work with a typical child just don't seem effective with a child with autism or PDD.

Let's look at some of the reasons why.

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 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. For instance, if he laughs at you when you discipline him or responds in another inappropriate fashion, 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 such as this, you 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. He may feel badly but not know how to express it.

- 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 may be 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

As mentioned above, weak executive functioning skills are common in kids with ASD. The difficulty and frustration can be compounded because the child realizes that he has more difficulty 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 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 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 accidentally. 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.

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 would be good if he can see an Occupational Therapist, but if it's not possible and you want to learn more about sensory issues 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/...)

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 for a few moments of peace, 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 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.

In the meantime, although you mention therapists, are you involved with any parent support groups? Sometimes they can really help. With five children, attending weekly meetings might be difficult but there are online communities that where you might find understanding parents who learn from each other. One such group is http://www.mdjunction.com/autism

Best of luck,

Sharon A. Mitchell, B.A., B.Ed., M.A., Ph.D. Candidate
www.autismsite.ca