by Naomi Swiezy, PhD
Taking your child to a clinic for an evaluation is an intimidating process. Often a variety of diagnoses or labels are discussed and considered, confusing the big picture you have of your child. You leave with one question: "Now what do I do about it?" This article will address this issue by presenting practical tips for managing your child's inappropriate behaviors while also teaching some appropriate behaviors and alternative skills.
Parents of children with Down syndrome and autistic spectrum disorder (DS-ASD) are especially in need of these tips because there is so little information available about this dual diagnosis for parents or professionals. As parents, you become comfortable accommodating your child's learning style based on information about Down syndrome and your own experiences. Then the latter diagnosis, autistic spectrum disorder, is superimposed on the first. At this point many parents are overwhelmed. They feel as though all hope for modification is lost. However, if you approach your child's behavioral difficulties that are often associated with autistic spectrum from a systematic, behavioral perspective, you will feel renewed hope for not only behavioral management, but also for skill development.
One methodology that has proven effective for children with autistic spectrum disorders, including those with Down syndrome, is applied behavioral analysis or ABA approaches. ABA approaches are based on the idea that we know when children misbehave, they often have some motivation to do so. We also know children learn from their environments and adapt their behavior to gain access to what motivates them the most. What becomes confusing is that each child is motivated by different factors and sometimes more than one factor at a time. To address this, ABA uses systematic and empirical ways to assess the individual motivational factors of each child. With this information, individual programs or plans are created addressing both what happens before the behavior, as well as the consequences for the behavior itself.
There are several general guidelines you can use to improve behavior-related problems without conducting a formalized assessment. These strategies will improve your child's behavior regardless of the specific motivation behind them. However, we first need to look at some general facts about children with Down syndrome and autistic spectrum disorder (DS-ASD) that form the basis for working effectively with your child:
- Children with DS-ASD do not misbehave because they are mean-spirited or obstinate. All behaviors serve a purpose. That purpose may be to communicate wants and needs. Particularly children who are non-verbal or just learning to communicate will communicate in whatever method is most effective and successful in getting what they want, whether it is appropriate or not.
- Children with DS-ASD can learn. Learning may take longer and you may need to use different teaching strategies that are more explicit and direct than for other children, but they do learn.
- Children with DS-ASD have three major areas of concern: communication, socialization and interests or activities. A child with DS-ASD may or may not have a different amount of language, socialization and leisure behaviors from other children her same age. What is distinct is they way interactions vary from what is expected from other children of their same age and developmental ability, particularly in the area of communication, socialization and activities.
- Common behavior problems such as aggression, tantrums and "noncompliance" are not part of DS-ASD. For instance, it is not necessary for a child to have these behaviors to meet diagnostic criteria for the DS-ASD. However, children with DS-ASD tend to respond with aggression, tantrums or "noncompliant" behavior as a way of communicating a frustration or need. The behaviors are the result of the syndrome, not a symptom of it. Some suggestions regarding how to respond to these behaviors are discussed later in this article.
- A comprehensive, individualized program is the most effective way to affect behavior. A comprehensive program will not only address consequences for inappropriate behaviors, but also focus on training appropriate alternatives, such as functional communication and play skills. If you seek only to reduce inappropriate behavior, you may be decreasing the only effective form of communication your child has. It is as important to teach a child what to do as well as what not to do.
Helping Your Child Achieve Her Potential
The most effective approach to shaping appropriate behavior for children with DS-ASD is to create opportunities in the environment for the behavior you want to occur. It is equally important to respond to inappropriate behaviors with effective management strategies. Below are some general guidelines that address both of these angles. If you are overwhelmed or faced with behaviors that are very difficult or pervasive in nature, please consult a trained behavioral specialist who is familiar with ABA strategies. A trained ABA specialist will work with you and your family to build specific recommendations and plans for your child.
- Do not set expectations too low. Your child is capable of learning. However, she may learn many essential skills such as functional communication, toileting, social skills, play and engagement more effectively by using explicit teaching than by picking the skills up naturally. Regardless, your child will develop skills. Expect progress and growth.
- Do not set expectations too high. Set goals that are realistic. It helps to break tasks down into separate steps that you prompt and respond to independently. This encourages success and reduces the stress or frustration and, ultimately, behaviors, that arise when expectations are too high.
- Change activities often and always try to end with success. Just as it is important to set reasonable expectations, it is important to know when and how to end a teaching session or change activities. When you are teaching your child a new skill, take a break before she becomes fatigued or frustrated and misbehavior arises. If possible, end the activity at a point where she has achieved some success. As much as possible, plan to end any specific teaching time on a positive note. This will build your child's positive feelings about her abilities, and yours too. Consistently working until she is fatigued is frustrating for everyone; she feels she has lost control of her situation and will act out accordingly.
- Use things your child enjoys as reinforcement. When your child has done something that you want to encourage, it's important she sees your response as a worthwhile reward. Keep in mind many children with DS-ASD may take particular pleasure from some things that others would not find particularly reinforcing or gain pleasure from. That's OK. What is important is that your child sees the reward as a reinforcement for her behavior or work that she has done.
- Allow choices whenever possible. If your child does not feel she has control over her environment, she will be frustrated (and misbehave) as a result. Provide the illusion of control by giving her choices regarding aspects of the task without lowering your expectations. For example, if you would like her to sit down, you can say, "You need to sit -- do you want to sit in the big chair or the little chair," or "You need to get dressed -- do you want to put on your pants or shirt first?"
- Incorporate structure and routine into the environment. Children with DS-ASD often do not pick up on vague cues that others do to detect changes in rules, expectations or events. Therefore, building predictability through structure and routine encourages appropriate responses and increases the chance of success while decreasing frustration and resulting inappropriate behaviors.
- Plan ahead for transitions. Children with DS-ASD have difficulty with changes or new activities. You can help your child by allowing for adequate time and using prompts that are effective for your child about the change as it is about to occur. This may mean specific verbal cues, a visual schedule or physical cues (a touch or gathering specific items) that communicate what is coming next.
- Make eye contact. Children with DS-ASD may not pick up on verbal cues even though they understand the request or comment. Achieving eye contact in any interaction, spoken or visual, will increase the chance your child is attending to the interaction.
- Be as concrete as possible. Using abstract ideas, analogies, exaggerations or sarcasm may only serve to confuse your child. She may take your comments literally or thoroughly misunderstand. Keep your comments simple, clear and concise to encourage her understanding. For example, give short, direct, instructions: "Alice, turn off the TV." Then follow the guided compliance procedure described below. This will be more effective than saying, "Why are you watching TV when you're supposed to be getting ready for school?"
- Use more than verbal instruction. Use a combination of verbal, visual, modeled and physical prompts to get your point across.
- Be consistent in every way. Your child will be most successful when the environment is predictable in terms of structure, routines and expectations.
Use these ideas and methods to set the stage for your child's success and encourage appropriate behavior. It takes planning, but it is an important part of shaping your child's behavior. Once this is done, take a look at teaching your child what it is you would like them to do.
Using Prompts to Teach New Skills
Children with DS-ASD may do better using specific teaching methods for new tasks. Your child must understand the request, what action to take to follow the direction and then do those things. To do this, your child may need a variety of cues (visual, verbal and physical) for her to understand and then follow-through with action. In addition, her interest in repetitive or other behaviors may interfere with her ability to follow your direction. Teaching your child to follow simple commands is a basic tool for managing your child's behavior. If your child is not attentive or receptive to your demands then this will limit your child's ability to learn more adaptive ways of responding.
One way to present new directions and teach the requested response is called guided compliance procedures. This method is effective with gaining compliance in most cases. There are three basic steps to the procedure:
Verbal prompt: Give your child a clear instruction and wait five seconds. If she follows your direction (complies), praise her in a manner that specifically and concisely details what she did well. (e.g., "That’s good for..." and insert the task completed). If she does not comply, move to the next step: a gestural and verbal prompt.
Gestural prompt: Show your child the exact response you desire. As soon as you complete the task, return things, or yourself, so they are exactly the same as before you gave the prompt. Tell her, "Now you do it." Wait five seconds without providing any other cues. If she complies, praise her specifically for her actions. If she does not comply, move to the next step: a verbal prompt with physical prompt follow-through.
Physical prompt: Take your child hand-over-hand through the entire response as you say, "You need to (repeat instruction)." No praise is issued if you must utilize this step.
- The basic premise behind this procedure is that sometimes your child may not be attentive, may not hear you or may not understand what is being asked of her. The middle step is added to provide the benefit of the doubt. Even if you are convinced that these things are not occurring, attempt this strategy and observe behavioral change. You will learn more about your child in the process.
- The timing of five seconds between each step allows some opportunity for compliance and keeps the pace moving. However, for some children, this processing time is not long enough and the time interval may be expanded to more like 10 seconds. If the interval is too much longer, the procedure is not as smooth and allows too much for diversions and task evasion.
- The way you say things when talking to your child is very important. Your child is more likely to do what you ask if you avoid some common pitfalls of giving instruction. These include: giving long or multiple requests at one time, providing vague requests such as "Be a good girl," issuing questions rather than statements, repeating instructions, giving instructions when there is not enough time or energy to follow through and failing to achieve eye contact. Use one-step, concrete instructions as much as possible.
- When using the physical prompt, it is important to demonstrate the exact response you want. This is where you are teaching your child what is expected of her. It is important to teach it correctly the first time.
- When using the physical prompt, it is important to be sure that your child is fully involved in the task and is not just loosely held while you complete the task. That is, even if the task may be completed with one hand, if physical guidance is necessitated, then you should hand over hand from behind the child and guiding both hands.
- Initially, you may want to practice this prompt sequence within the context of one specific task (e.g., dressing, eating). That way, you can practice the sequence in a natural, time-limited situation and your child will master a new skill that makes life a little easier.
- Establish a standard schedule and routines for your child. The more predictability your child has in her day, the less often you will need to guide her through specific tasks.
- Large tasks such as cleaning her room, are best broken into several smaller tasks for better success. This presents more opportunities for praise and is reasonable for everyone if she needs gestural or physical prompts.
- Do not give an instruction unless you are willing to provide follow through. Consistency in follow-through to the gestural or physical prompt as needed is more important than giving the instruction alone.
- Set up situations so your child earns more attention for compliance than for noncompliance.
- Misbehavior during the three-step procedure should not allow escape from the task -- rather, this behavior should be ignored and the sequence continued.
Behavior Management Strategies
Understanding what motivates your child's behavior and deciding how to approach it can be a daunting task. Although a formal, functional assessment is the most thorough method, there are some general and effective strategies to consider as a starting point. It is important to individualize them for your child. Some of these techniques, such positive reinforcement and planned ignoring, are straightforward and intuitive in theory, but will prove to be quite difficult to implement. Therefore, remember to set reasonable expectations for yourself and your child and seek the support of a trained professional.
Children typically enjoy receiving attention. If they do not receive enough positive attention for their good behaviors, they will often resort to behavior that results in negative forms of attention (e.g., yelling, nagging, "time out"). They would prefer to receive this negative attention than to do without attention all together. Over time, they learn which actions are the most effective in getting a response -- positive or negative. This is called, differential responding.
It is important to show your child more attention for acting appropriately than for acting inappropriately. This will motivate her to continue with positive behaviors. When used along with procedures to reduce inappropriate behaviors, such as ignoring (see below), it will encourage her to discriminate which behaviors will gain approval. It is important for children to learn that only appropriate behavior receives a response.
This makes sense to most people. When your child engages in appropriate behavior, she should receive a positive and heightened response; when she misbehaves, attention should be limited. Unfortunately, it is natural to respond opposite to what is effective and aggravate the situation. That is, when your child acts appropriately, you (the parent or teacher) tend to ignore her good behavior fearing that if you respond it will "rock the boat." Conversely when she behaves negatively you respond dramatically. In reality, the best way to teach your child how to act appropriately is to attend to the positive behaviors and ignore the inappropriate behaviors. Particularly for children with DS-ASD, the easier it is to discriminate between responses to positive and negative behaviors, the quicker she will learn that the best (and only) way to get any form of attention is through good behavior.
Differential responding is most effective when both positive attention and ignoring are implemented. In this way, your child learns inappropriate behaviors result in no attention and acceptable behaviors result in positive attention. This eliminates at least one motivation for inappropriate behaviors such as attention seeking.
The components of these strategies, positive attention and ignoring, are detailed below:
Giving positive attention effectively:
- Make eye contact with your child and speak enthusiastically
- Be specific about the behavior that you liked: For instance, "Good being quiet" or "Nice hands to self," instead of: "Good girl."
- Keep praise statements simple: For instance, "Good picking up toys" instead of, "That was good picking up your toys so that no one would trip on them."
- Give attention immediately following the behavior that you liked: Delays in rewards make it more difficult for her to determine what she did to receive attention.
- Withhold attention to an inappropriate behavior (or anything following it) occurring within the last 30 seconds: For example, your child should exhibit at least 30 seconds of good behavior before you praise her with positive attention after a negative behavior. This helps her discriminate between the behavior being rewarded as the most recent positive behavior rather than a previous misbehavior.
- Give the type of attention that your child enjoys: Children with DS-ASD find different things pleasurable than other children. Make note of the type of attention your child enjoys such as tickles, hugs or a specific touch. It is important that the attention you give to reward appropriate behavior is positive to your child.
- Catch your child being good: The gains you see in your child seem like small improvements or behaviors which would only be expected due to chronological age. However all gains and appropriate behaviors are important and should result in positive attention. Statements such as, "Nice sitting on the toilet" or "Nice brushing teeth" are important for your child to hear.
- Provide positive attention for behaviors that cannot occur at the same time as inappropriate behaviors: For example, if your child tantrums often, praise her for playing quietly and using a normal voice during her play. If she is disruptive to others frequently during her independent play, praise her when she is playing independently and not being disruptive. These methods will teach her acceptable alternatives for misbehaviors.
- Get in the habit of catching good behavior and providing positive attention at least once every five minutes: You will know you are praising your child enough, when you feel you are doing it too much or too often.
- Be sure that good behaviors receive more attention than inappropriate behaviors
- Provide many opportunities for positive attention: It is easier to promote appropriate behaviors when your child is doing something she likes to do and you are both focussed on that one activity (instead of cooking dinner, correcting homework or folding laundry while your child plays). The more you arrange the environment to be conducive to appropriate behavior the better the chance she will learn how to act appropriately.
Using Planned Ignoring:
- Determine what is "ignorable behavior": Ignorable behavior is typically defined as behaviors that are not harmful to the child, others or others' belongings. It is important that all family members and caregivers be aware of the definition to be consistent in their response.
- Ignore as soon as the behavior occurs: Delaying your response (ignoring) will confuse your child if too much time passes between her action and your response.
- Ignore consistently: Whenever ignorable behaviors occur, be consistent in your response. The best way for your child to learn the limits to her behavior and to determine which behaviors will result in the desired attention is through consistent responses.
- Make ignoring obvious: To have an impact on behavior, your child must be aware that attention is being removed because of specific behaviors she has done. This is particularly challenging for children with DS-ASD who are less aware of social cues. Therefore, ignoring must be made obvious by:
- looking away,
- keeping a neutral facial expression,
- talking with others in child's presence,
- restricting physical contact,
- tuning the child out, or
- engaging in household tasks.
- Expect behaviors to escalate: Things often get worse before they get better. This is because your child increases the frequency of behaviors to receive the attention she is accustomed for them. This does not mean that ignoring is not working -- quite the opposite -- she is merely testing the new rules that have changed.
- Distract yourself from attending to difficult behaviors: When your child's behaviors escalate, it may be best to leave the room, turn on the radio or TV, pick up a magazine or call someone on the phone to prevent you from reacting to your child's behaviors. Keep an ear out for situations that require your immediate attention, however.
- Do not allow your child to escape a task due to ignorable behaviors: If you are working on a task, such as putting toys away, continue to follow through with the task even if behaviors you have defined as "ignorable" occur.
Ignoring is a very active strategy that requires that you withhold eye contact and make no verbal response to the child. However, it does not mean to stand back and allow destructive or other behavior to occur. It is important at times to prevent and block behaviors as well as removing or diverting a child from an area or situation. It is important to keep everyone and everything safe.
Children with Down syndrome and autistic spectrum present a unique blend of characteristics. The dual diagnosis also complicates intervention strategies, particularly from a behavioral standpoint. Parents and professionals are often unsure what to do for behavioral issues when the dual diagnosis is present.
A practical approach is to use teaching strategies and behavior management methods that address the specific needs of your child and your family. Although this is best done with the assistance of a behavior specialist, some of the strategies described in this article are effective in helping you begin to make progress with your child.
Once you understand the main areas of need for your child and your family, the individual motivations for behavior, treatment of behavioral issues your child with Down syndrome and autistic spectrum is less mystifying. The core to effective teaching and appropriate behavior is consistency, consistency and consistency!
Naomi Swiezy, PhD, is a clinical assistant professor of psychology in psychiatry in the Autism Clinic at the Riley Hospital for Children at Indiana University Medical Center. Prior to this she was the director of the Autism and Pervasive Developmental Clinic and behavioral consultant to the Down Syndrome Clinic at Kennedy Krieger Institute.
The article above is reproduced from the September/October 1999 issue of Disability Solutions, Volume 3, Issues 5-6. Permission was granted for its use on this web site. In accordance with federal copyright restrictions, the contents of this article may not be reproduced by photocopying or any other means without written permission from the copyright holder. © 1999 Disability Solutions