Parenting ASD Children: Preventing Problems Before They Start

Question

"Are there some ways to prevent some of the discipline-related problems encountered with ASD children (e.g., meltdowns associated with receiving a consequence for misbehavior)? I say ‘prevent’ because it seems that once my son knows he is going to be punished, it quickly escalates into meltdown, which by then is much too late to intervene (i.e., it just has to run its course at that point). In other words, can a parent ‘predict’ - and thus prevent - a potential meltdown?"

Answer

Sooner is better than later. Most people tend to wait until a problem arises and then attempt to deal with it through the use of a consequence. Consequences can be positive (gaining something) or negative (losing something). At times, consequences are discussed prior to an event, but usually in terms of a motivator: "If you do this, you will gain (lose) something else." More often we use consequences in the middle of a problem, such as, "If you don't stop that, you're going right to bed." Or, "You won't watch any TV if you don't leave your sister alone." Or, "You're in time-out right now. I've had it." All of these statements are made when the behavior is out of control. You have given many warnings and you are now acting out of frustration. However, none of these comments will lead to positive change in the short or long run.

With an ASD (high-functioning autistic) youngster it is far better to anticipate the occurrence of a behavior and then plan for it. Many problem behaviors are repetitious, especially in the same situation. Even when they don't occur every time, they may still be frequent enough to warrant this approach. A rule of thumb is if a behavior repeats itself at least half of the time, moms and dads need to prepare for it. For example, if homework, bedtime, or dinnertime have been frequent problems in the past, chances are very good they will continue to be so in the future.

Future vision is the ability of an individual to know what is going to happen in an upcoming situation because of its constant re-occurrence. When you know what is going to happen you can prepare your youngster for the event prior to its occurrence by discussing what usually occurs and what needs to occur. For example, going out to dinner is often a problem time. So talk with your youngster about what normally happens, how he acts, how you do, and then follow that up with a discussion and see if you can get a firm commitment from your youngster that he is going to follow these new behaviors. If he responds in a positive way, you have increased the likelihood that things will go better when you go out for dinner. 
 

If you happen to miss the opportunity to prevent a problem, there is often a small "window of opportunity" in which you can still salvage the situation. In the example above, suppose you have forgotten to say something before you left for dinner. As events begin to unravel, you have a very brief period of time – sometimes only a minute or two – before you'll be in a messy situation. Seize this opportunity. It may be the last best one in that situation.

To make interventions effective you need to create an environment in which your youngster feels comfortable, anxiety is decreased, and your youngster has an understanding of the events taking place around him. The environment needs to provide consistency, predictability, structure, routine, organization, logically explained rules, and clear rewards/consequences in response to these rules. When this is in place, your youngster will begin to feel competent. I am reminded of a student who had been expelled from his kindergarten class as the result of unmanageable behaviors – even with one-on-one support. After his first week in my class of eight ASD students, without any additional support, he said, "Hey, I like this new school. I know the way." A number of things need to be in place...
 
First, the physical environment must be consistent. In all locations you need to identify consistent areas where specific activities are completed, such as that homework is always completed at the desk in his bedroom or at the kitchen table. These areas/activities should also have consistent behavioral expectations, which are explained to your youngster, such as, "At my desk I do calm sitting." Calm sitting is modeled and practiced. You need to identify clear physical boundaries, such as a planned seating arrangement in school or a planned play area at home. Use consistent materials that are clearly marked and accessible, like toys that are within easy reach and stored in or right by the area they will be used in.

In addition, expectations, such as the rules, rewards, and consequences, should be visually available. Once again, these must be clearly described to your youngster. After this has been completed, use charts with stickers or stars to keep track of reward systems. Use the letters of your youngster's name placed on a chart to keep track of consequences. Throughout the day, if letters have been received, they can slowly be erased for positive responding. This provides a wonderful visual response for appropriate behaviors, and you can deliver this feedback, depending on your youngster's needs, every ten minutes, fifteen minutes . . . three hours – you decide what works best.

Second, your relationship with your youngster must also be consistent in both word and action. He must see you as a predictable person, a person in control, a calm person, and, finally, a person who keeps his word. Being "easy" or giving your youngster a "break" will hinder your effectiveness. You make rules and stick to them. You make requests and follow through; you don't make second requests, and you don't plead. Your interactions must be stable, allowing your youngster to anticipate how he will respond. He must see you as someone who can help him understand the world around him. 
 
The highest praise I can receive from a youngster is being thought of as his helper or problem solver – "Ask Mrs. Simpson, she knows how to help." "Mrs. Simpson is a problem solver." "Did you know Mrs. Simpson's job is to help me figure things out?" If you are only seen as a problem causer, your effectiveness will be minimal. You must be highly organized and pay attention to details as you create a structured environment for your youngster. However, you must be able to remain flexible within this structure. By doing so, you will provide the structure your youngster needs to learn to be flexible. 
 

Third, reinforcers will need to be very individualized, as the autistic youngster or teen often does not respond to typical reinforcers. You must be well aware of what your youngster views as a reward. Incorporating obsessions into a reinforcement system is an appropriate way of offering a strong reinforcer and of also controlling access to an obsession. You need to make sure your youngster is aware of how the reward/consequence system works. Natural consequences can also be highly effective and will remove the "giving" or "denying" of the reward from you. 
 
An example of a natural consequence is: "If you finish your morning routine within a certain time limits you will have time to watch a favorite TV show before school. If you take too long, you will not be able to watch the show." Favored activities should follow less favored or challenging activities. A word of caution: reinforcers can also cause difficulties if they are used too frequently. Not only will they lose some of their potency, but struggles can arise over the giving or not giving of the reward.

Fourth, at both home and in school, develop a daily routine so that your youngster knows what he is doing and when. Posting the schedule and reviewing it when your youngster becomes "stuck" can provide the necessary prompt to move on. In addition, compliance is not a struggle between you and your youngster, but rather simply a matter of following the schedule. The individual views the schedule as a guide. As noted, a guide will always serve to decrease anxiety, which in turn decreases behavior issues. I have heard my students tell visitors who enter our classroom, "That's our schedule; don't erase it or we won't know what to do." This is said even by students with excellent memories, who from the first week of school could perfectly recite the daily schedule for each day of the week (again, during sabotage, a goal will be to decrease the importance of the schedule as the year progresses).

The important detail is to review the schedule. We have seen many situations where detailed schedules are written, but never regularly and carefully reviewed with the youngster. As you review the schedule, you not only lessen anxiety, but you also provide an opportunity to discuss appropriate responding. When you develop a schedule at home, you may number the items on it, such as 1, 2, 3, but try to avoid assigning times to each event or activity. 
 
It is often difficult to do things to the minute, and failure to do so can lead to further upset for an ASD youngster. You may also choose to establish a routine for only a small portion of the day, if you feel a day-long schedule would be too great a change for your youngster. For example, you might create a schedule for an activity, such as going to the mall, as an easier place to start. For a teen, rather than using a written schedule, you could use a desk calendar or day planner. Again, this accomplishes the goal of providing a visual guide. We will discuss the use of schedules in greater detail later on in this chapter.

The creation of this environment will take time and will require you to examine more details than you knew existed in any environment. Your reward, however, will be the miracle of watching your youngster leave his anxieties and problematic behaviors behind. You will see him begin to really trust you and take chances he never thought he could. You will witness his gradual and steady steps into a larger world.

It's time to expand your ideas of how to use language and to explore how you can use it as a powerful tool to decrease anxiety and increase compliance. Remember, gain your youngster's attention before you begin to speak. You should be physically close to him (though not in his personal space) and, for the young youngster, on his eye level. Your language should convey meaning, provide the "road map" or "game plan," and enable your youngster to respond more appropriately. 
 
These kids don't have the road map we all have and take for granted, which allows us to maneuver in the world around us. Language used in a concrete, predictable manner becomes a way to teach alternative behaviors. For example, even after social skills training, saying to Sam, age nine, "Today after school, Mom is taking you to the playground to make and play with a new friend," doesn't provide enough information. He doesn't know what that means or what is expected of him. Instead, I would provide Sam with a "game plan." 
 

When your youngster misinterprets a situation, your language can be used to reframe the situation, allowing your youngster to reinterpret it appropriately. This reframing can also be used when your youngster engages in inappropriate behaviors. Through your language, you provide alternative responses for the future. More important, your language can be used to introduce new ways of thinking or rethinking previously held beliefs.

An example of this would be the introduction of new foods into a youngster's repertoire. This was a goal for Michael, an eleven-year-old who would eat very few foods. More disturbing, the particular foods he ate made him seem unusual to his middle school peers (the same soup brought from home each day, cold noodles, etc.). In beginning to work with Michael, the idea of eating new foods was introduced by linking the eating of new foods with age-specific skills. The discussion began by asking him to recall different skills he had learned at different ages (crawl/walk/run, cry/sounds/words, drink from a bottle/sippy cup/regular cup, etc.). 
 
This led to the development of a new system to classify how a youngster changes: the preschool way, the elementary school way, the middle school way, the high school way. Trying, eating, and then incorporating new foods into his diet was put into this system with specific foods for each category. Items such as pizza, sandwiches, hot dogs, burgers – typical adolescent foods – were included in the middle school category. This language approach was paired with a step-by-step program to actually introduce the new foods. In addition, we helped Michael to view eating these new foods in a different way (we reframed his approach to new foods).

A social story and cue card with "the middle school way" were also created. Initially, Michael bought the school lunch only on Tuesdays. Once this went smoothly, we met again to choose the next new food to try. Providing him with the visual of a weekly lunch menu helped to lessen his anxiety. Every Friday we outlined what he would eat each day of the following week. We also wrote down on which days he would bring a packed lunch and on which days he would buy lunch and what he would buy. Initially, to allow Michael some choice, he had complete control over his packed lunch.

After a new food had been introduced and accepted by Michael for two weeks, another new food would be introduced the following week. The same pattern was repeated, unless he initiated a change (for instance, he wanted to try a new food sooner, which he sometimes did after success with the second new food). His middle school goal was to eventually buy school lunch three days a week and pack lunch two days a week. Once this was established, we began to work on the foods he brought from home. This task became quite simple, because buying lunch had generated many new and appropriate food choices for Michael that he could also bring from home. 
 

Throughout this period, "the middle school way" was mentioned as frequently as possible. Whenever Michael did something new or was successful in any new area, I labeled it "the middle school way" and pointed out he could not have done this in elementary school. This intervention, though presented as a whole, had three distinct parts:
  • A gradual step-by-step approach was used to introduce the eating of new foods.
  • A reframing of Michael's thinking about new foods was reinforced at every opportunity.
  • A system was developed to pair eating new foods with a rule ("the middle school way").

When using language to teach new responses, developing and writing the keywords or phrases to be used when introducing or generalizing these new concepts will be important. In the above example with Michael, "the middle school way" was a keyword for behaving in an age-appropriate manner. By making the words and phrases visual, you guarantee both greater understanding and usage of the phrases. Remember, using the phrases, not simply writing them, makes them effective. The words or phrases can be developed by you or by your youngster. Unusual phrases, ads, or catchy sayings are often attractive and easy to remember. 
 
The first step is choosing the area you want to work on with your youngster. Then select (or have your youngster select) a word or phrase to be used as a quick reminder for appropriate responding. With use, the key word or phrase alone will convey the concept and what appropriate responding will look like. This will allow your youngster to generalize a skill more easily. When the phrase is used in a new situation, he will know what to do, because the phrase corresponds to the new behavior. After one has been mastered, add other phrases as needed. Below is a sample list of phrases we have found to be effective:

Sample List of Key Words and Phrases
  • Being flexible (it is very important that this concept is taught early, even to a youngster as young as five – in my classroom this is as important as reading and math)
  • Being okay (getting yourself together to handle a situation)
  • Bumping (refers to interrupting others when they are speaking)
  • Conversations go back and forth (used as a reminder when learning how to converse with others)
  • Dealing with disappointments (refers to what to do when something doesn't go the way we thought it would)
  • Don't be a "me first" (used with those kids who have an obsession about always being first: in line, when playing a game, being called on, etc.)
  • Don't get stuck (refers to not allowing a problem to control you or stop you from moving on; this skill is taught)
  • Drop the subject (refers to talking on and on)
  • Eyes up here (key phrase to help with attending and focusing)
  • Get your control (key phrase used during a crisis)
  • Good choices/bad choice
  • In your head (refers to statements that should not be said aloud, usually statements about a person's physical appearance or statements that would hurt another's feelings)
  • Just do it (refers to times when the youngster must quickly respond in a particular way without question; especially useful when the youngster is involved with peers or when returning to mainstream settings from special education)
  • Keep your problems small (used when the youngster's behaviors are just beginning to escalate in a negative way; serves as a reminder to maintain control)
  • Kiss ("keep it small and simple")
  • Looking and listening (often referred to as L and L)
  • Lower/raise your volume (to help the youngster to modulate voice volume; often paired with a hand signal)
  • Making changes (variation of the previous two above)
  • MYOB ("mind your own business")
  • Off the topic (said to the youngster when his response is not on the topic being discussed)
  • Personal space (not hugging, touching, etc., others when it is not appropriate)
  • Problems and solutions (refers to a technique used to either prevent a tantrum or assist the youngster in regaining control during a tantrum)
  • Respond quickly and quietly (often referred to as Q and Q)
  • Salvage the rest of the day (refers to not allowing a problem to ruin the rest of the day)
  • Say one thing (when answering questions or discussing a topic with too much detail – this skill should be practiced)
  • School sitting, school walking, etc. (refers to a specific manner of doing something that has been demonstrated to the youngster previously)
  • Show me (add the phrase for what you want the youngster to do)
  • Stick up for yourself (refers to the type of response the youngster must make when being teased or taken advantage of by others)
  • Stretching the topic (attempting to go off topic by trying to make your new topic – usually a special interest – appear related to the original topic)
  • Switching/substitutions (key words used to remind the youngster about being flexible)
  • Tell me what you have to do (often used after giving directions)
  • That doesn't make sense (used when the youngster says something that is inappropriate, for instance: fantasy talk, mislabeling another's or their own feelings, giving misinformation on a topic)
  • The preschool way, the elementary school way, etc.
  • The rule (It is very helpful for the youngster to have appropriate responses described as the rule; it appeals to their sense of seeing the world in black and white. Often simply stating that a desired response is "the rule" brings immediate compliance.)
  • The way (used to let the youngster know that you don't like the tone of voice they are using; e.g., "Can you try another way of saying that?")
  • Thinking with your body (learning to use your body to communicate)
  • Thinking with your eyes (learning to use your eyes to communicate)
  • This is a choice/This is not a choice
  • Use your words (controlling yourself by using words when you are upset or frustrated, rather than responding with a meltdown)

What moms and dads say is important, but how moms and dads say it can be the difference between success and failure. Sometimes a calm, even voice is needed; other times, a more dramatic tone may be called for. When you change the tone of your voice, point it out to your youngster. He doesn't use varied tones of voice to convey different meanings. 
 
By pointing this out, you communicate your meaning and you increase his awareness of the importance of paying attention to vocal tone. This should also be done with facial expressions and body language – two other modalities Aspergers kids don't use when communicating to or processing communication from others. Vary your facial expressions and body language, and explain and show how it helps moms and dads to understand what others are saying. 
 
A mother's comment: We have something called "chill out". It is not a time out. A chill out is when things are going the wrong way, and emotions are starting to escalate, we impose a chill out. During the chill out, you can go to your room, a quiet place (sitting on the stairs is a favorite). the time in the chill is completely up to the one in chill out. 
 
Resources for parents of children and teens on the autism spectrum:
 
 
 
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Social rejection has devastating effects in many areas of functioning. Because the ASD child tends to internalize how others treat him, rejection damages self-esteem and often causes anxiety and depression. As the child feels worse about himself and becomes more anxious and depressed – he performs worse, socially and intellectually.

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Meltdowns are not a pretty sight. They are somewhat like overblown temper tantrums, but unlike tantrums, meltdowns can last anywhere from ten minutes to over an hour. When it starts, the Asperger's or HFA child is totally out-of-control. When it ends, both you and your child are totally exhausted. But... don’t breathe a sigh of relief yet. At the least provocation, for the remainder of that day -- and sometimes into the next - the meltdown can return in full force.

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Although Aspergers [high-functioning autism] is at the milder end of the autism spectrum, the challenges parents face when disciplining a teenager on the spectrum are more difficult than they would be with an average teen. Complicated by defiant behavior, the teen is at risk for even greater difficulties on multiple levels – unless the parents’ disciplinary techniques are tailored to their child's special needs.

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Your older teenager or young “adult child” isn’t sure what to do, and he is asking you for money every few days. How do you cut the purse strings and teach him to be independent? Parents of teens with ASD face many problems that other parents do not. Time is running out for teaching their adolescent how to become an independent adult. As one mother put it, "There's so little time, yet so much left to do."

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Two traits often found in kids with High-Functioning Autism are “mind-blindness” (i.e., the inability to predict the beliefs and intentions of others) and “alexithymia” (i.e., the inability to identify and interpret emotional signals in others). These two traits reduce the youngster’s ability to empathize with peers. As a result, he or she may be perceived by adults and other children as selfish, insensitive and uncaring.

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Become an expert in helping your child cope with his or her “out-of-control” emotions, inability to make and keep friends, stress, anger, thinking errors, and resistance to change.

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A child with High-Functioning Autism (HFA) can have difficulty in school because, since he fits in so well, many adults may miss the fact that he has a diagnosis. When these children display symptoms of their disorder, they may be seen as defiant or disruptive.

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