Identifying and Coping with Pain and Illness in a Child with Autism by Emile Mulder, BA
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education & therapies
Emile Mulder, BA, is a third year doctoral student in clinical psychology at Stony Brook University. He specializes in autism research and was a member of Dr. Edward (Ted) Carr’s research group until his recent and untimely death. Emile has extensive clinical experience both as a one-onone behavioral aide conducting discrete trial training as well as other behavioral interventions for children with autism spectrum disorders, and more recently as a parenting consultant for children with developmental disabilities. His research interests include parenting issues for children with autism, pain, and illness in autism, and the application of new technologies for better assessing and intervening with autism. Currently he is working with Dr. Richard Heyman and Dr. Amy Smith Slep to understand and improve the role of parents in the lives of children with developmental disabilities. In addition, he is continuing Dr. Carr’s important research on the role of pain and illness in autism.
Identifying and Coping with Pain and Illness in a Child with Autism
Assuming that your child is like other children and frequently experiences pain and illness, the question becomes, “How do I know when my child is experiencing pain?”
By Emile Mulder, BA
hen working with children with developmental disabilities, one challenge is that there are often many professionals working with the same child at the same time, and none of them seem to talk to one another. The same can happen in research, where there are some people who focus on developing behavioral interventions and others who focus on studying biomedical interventions, and never the two shall meet. In the months before his recent death, my mentor, Dr. Edward (Ted) Carr, was fond of saying, “If you don’t use behavioral interventions with autism, you won’t get very far; if you only use behavioral interventions, you won’t get far enough.” Thus, Dr. Carr attempted to bridge the divide between the fields of medicine and behaviorism and show that, by listening to what the other field has to say, researchers and practitioners in behavioral and biomedical fields can learn a lot from each other. In a recent issue of The Autism File, Dr. Carr explained the different ways that behavioral research and biomedical research can intersect. This article teaches parents some practical applications. Specifically, I will explain how and why we need to know about pain in children with developmental disabilities (DDs), especially
REPRINTED WITH PERMISSION © THE AUTISM FILE
in those children who are nonverbal or verbally impaired. Then I will show what we can do to help children feel better and reduce problem behavior. “Mommy, my tummy hurts,” is a phrase frequently heard in the households of typically developing children; it tells parents that their child is in pain or discomfort, and where this pain is coming from. It gives a parent direction regarding what to do next. The parent may start trying to find answers to a series of questions such as, “Is there a fever?” “Should we skip school today?” and “Do we need to go to a doctor?” Almost every parent experiences this process on a regular basis – that is, assuming that the child has the verbal ability to communicate this pain. In the recent past, parents and professionals alike assumed that if an individual could not express pain, he or she was not experiencing pain. The consequence of this belief was a tendency to dehumanize those with disabilities and to treat them inhumanely. There is now a growing field of research on pain in nonverbal or verbally impaired people that is offering helpful alternatives to those beliefs. Assuming that your child is like other children and frequently experiences pain and illness, the question becomes, “How do I know when my child is experiencing pain?”
www.autismfile.com
10 • THE AUTISM FILE USA 35 2010
education & therapies
This is a question that researchers are just beginning to answer. Fortunately, there are several free questionnaires that provide a series of questions about common behaviors that may indicate pain. One such measure is the Non Communicating Children’s Pain Checklist Revised (NCCPC-R; Breau & Burkitt, 2009), which is available at: http://www.aboutkidshealth. ca/Shared/PDFs/AKH_Breau_everyday.pdf. Questionnaires such as the NCCPC-R can help guide parents and those who work with verbally impaired children in understanding the level of pain or distress that their child is experiencing. Parents can then respond appropriately to the pain. Although your child may not be able to speak, he or she experiences pain or discomfort like everyone else. In general, children experience pain and illness often, and children with autism experience it just as frequently (and many researchers argue that these children actually suffer more from illnesses). If your child can’t express his or her pain, then you may help him or her greatly if you learn to guess when your child is in pain. The questionnaires can help with this process. Assuming we can determine when a child is in pain, how can we treat that child? The first step is to seek medical help when appropriate. If your child is suffering from a chronic illness that is causing pain, a doctor may be able to reduce or eliminate it. Therefore, as a parent, you can use the questionnaires to assess when and in what circumstances your child is in pain; then you may be able to help the doctor diagnose the problem, which will lead to more effective and quicker treatment. Beyond seeking medical treatment, you can help your child by responding to the pain appropriately. What is “appropriate”? Imagine the parents of a typically developed child who find out that their child has a fever. What would those parents do differently on that day? Would they give their child medicine? Would they send their child to school? Would they insist that the child clean his or her room? When put this way, the answer seems simple and obvious but, in real life, it can be easy to forget these simple approaches, particularly when your child does not communicate his or her pain. Being on the lookout for pain, recognizing the pain, and acknowledging this pain can therefore help you to respond appropriately to it. Doing this can not only make your child feel a little bit better, but it can also help to reduce or eliminate the problem behavior that may result from the pain. Behaviorists often work by trying to understand the reasons for a behavior. For example, if Billy is told to do his homework, throws a tantrum, and then is allowed to escape from his homework, we could guess
www.autismfile.com
that Billy throws tantrums because he hates to do his homework, and tantrums get him out of homework. We can then treat the tantrums by either helping Billy to like his homework more, or by making it so that tantrums won’t get him out of his homework, or by some combination of both. We could also remove the demand entirely, although in the case of homework, this is probably not a good long-term solution. For simple problems like Billy’s tantrums, behaviorists usually have a clear and simple approach. However, coming up with a solution to eliminate or reduce problem behavior is more difficult when the problem behavior seems random. When behavior seems to occur randomly, it often means that there is more going on than what we are aware of. In this situation, internal factors such as pain and illness should be considered. Sometimes a trigger for problem behavior can occur nine times without causing a problem, but the tenth time the problem behavior appears. As a result, it may become difficult to predict the behavior and change the environment accordingly. Towards the end of his career, Dr. Carr was very passionate about solving these problems using a concept called setting events. Setting events (such as pain, illness, discomfort, fatigue, sadness, and anxiety) are events that make a behavior more or less likely to follow a known trigger. For example, consider a typical husband and wife, Jim and Mary. Mary typically asks Jim to take out the garbage when he comes home and, normally, Jim grumbles a little, but takes out the trash anyway, which Mary then responds to by giving him a kiss and asking him about his day. One day, Jim starts to feel the flu coming on. He is groggy all day and comes home exhausted. Now Jim is fatigued and cranky. When Mary asks him to take out the trash, he snaps at her, which results in an argument. In this example, Jim’s fatigue and discomfort is the setting event that changes the equation. Something that used to be a mild annoyance becomes intolerable to Jim and, as a result, he reacts in a much more severe manner. Fortunately for Jim and Mary, he may be able to explain himself and smooth things over. Imagine a similar situation for a nonverbal child with autism who has no way of telling his teacher or caregiver that he is too sick to point to a triangle that day. In this situation, a child who normally feels no need to escape from demands will use whatever tools at his or her disposal to escape. These tools are often problem behaviors, such as hitting, screaming, biting, or self-injury. Unfortunately, chronic illness is common among children with developmental disabilities and, because
In the recent past, parents and professionals alike assumed that if an individual could not express pain, he or she was not experiencing pain. The consequence of this belief was a tendency to dehumanize those with disabilities and to treat them inhumanely.
REPRINTED WITH PERMISSION © THE AUTISM FILE
THE AUTISM FILE USA 35 2010 •
11
education & therapies
Towards the end of his career, Dr. Carr was very passionate about solving these problems using a concept called setting events. Setting events (such as pain, illness, discomfort, fatigue, sadness, and anxiety) are events that make a behavior more or less likely to follow a known trigger.
Reference Breau, L. M., & Burkitt, C. (2009). Assessing pain in children with intellectual disabilities. Pain Research & Management, 14(2), 116-120.
12 • THE AUTISM FILE USA 35 2010
we are not always aware that a nonverbal child is in pain, the illness may go untreated. Thus, it is important for caregivers, teachers, and behavioral workers to be aware of the possibility that chronic illness may be playing a role in problem behavior. By taking into account factors such as ear infections, menstrual pain, sleep disorders, allergies and other types of chronic illness, behaviorists, parents, and teachers can take steps to reduce demands on sick days or at sick times, in the same way that we would with any typically developing child. If we know that illness contributes to problem behavior, we may be able to do something about it. Towards this end, three basic strategies can be used: avoid, mitigate and cope. If Billy normally does his homework without a problem, but throws a tantrum when asked to do his homework on sick days, we may be able to help Billy by letting him skip homework when he is feeling sick, or at least putting it off until he feels a little better. Thus we learn to avoid the trigger for the behavior altogether on days that we believe it will result in the problem behavior. Effective medical treatment also falls into this category as it helps to avoid this negative situation altogether. An alternative to avoiding the problem situation is to mitigate the situation by making Billy’s homework easier on sick days, or by coming up with other pleasant or relaxing things for him to do in addition to his homework. The main goal of mitigation is to change the situation so that, on balance, it will be as conducive to good behavior as possible. Since Billy is upset, but he still needs to do his homework, we mitigate by cheering him up in other ways, and hopefully homework won’t be so bad. Lastly we can consider working on coping, which
REPRINTED WITH PERMISSION © THE AUTISM FILE
involves teaching children the skills they need to cope with pain and illness, such as asking adults for help, comfort or medicine when needed, or learning to breathe deeply to calm themselves down. Coping may also involve teaching children (possibly with pictures) that the pain is only temporary and that it will go away over time. If these approaches all sound like common sense, they are. They may seem so obvious that you are wondering why even bother listing them. Most parents of typical children perform any combination of these approaches without even thinking. They do them because their children ask them to. However, when working with verbally impaired children, we do not have the luxury of having a child tell us exactly what they need, and so it becomes very easy to be unaware of a child’s needs. Unfortunately, this does not make these needs go away, so it becomes necessary for parents to ask themselves, “What might my child need, and how can I give it to him or her?” Avoid, mitigate and cope are excellent starting points to answering the second part of that question. All children have needs, but not all children can communicate those needs to us. When this is the case, we must take steps to be more responsive. In the case of pain and illness, we can become more responsive by learning to assess for pain by observing behavior. We can then use this information to avoid making excessive demands on children when they are unable to comply. In addition, we can mitigate or improve stressful situations and teach children to cope with the difficult realities that we can’t change. Taken together, these steps may only solve some problems, but they may improve the quality of your child’s life as well as those of other family members.
www.autismfile.com
education & therapies
Emile Mulder, BA, is a third year doctoral student in clinical psychology at Stony Brook University. He specializes in autism research and was a member of Dr. Edward (Ted) Carr’s research group until his recent and untimely death. Emile has extensive clinical experience both as a one-onone behavioral aide conducting discrete trial training as well as other behavioral interventions for children with autism spectrum disorders, and more recently as a parenting consultant for children with developmental disabilities. His research interests include parenting issues for children with autism, pain, and illness in autism, and the application of new technologies for better assessing and intervening with autism. Currently he is working with Dr. Richard Heyman and Dr. Amy Smith Slep to understand and improve the role of parents in the lives of children with developmental disabilities. In addition, he is continuing Dr. Carr’s important research on the role of pain and illness in autism.
Identifying and Coping with Pain and Illness in a Child with Autism
Assuming that your child is like other children and frequently experiences pain and illness, the question becomes, “How do I know when my child is experiencing pain?”
By Emile Mulder, BA
hen working with children with developmental disabilities, one challenge is that there are often many professionals working with the same child at the same time, and none of them seem to talk to one another. The same can happen in research, where there are some people who focus on developing behavioral interventions and others who focus on studying biomedical interventions, and never the two shall meet. In the months before his recent death, my mentor, Dr. Edward (Ted) Carr, was fond of saying, “If you don’t use behavioral interventions with autism, you won’t get very far; if you only use behavioral interventions, you won’t get far enough.” Thus, Dr. Carr attempted to bridge the divide between the fields of medicine and behaviorism and show that, by listening to what the other field has to say, researchers and practitioners in behavioral and biomedical fields can learn a lot from each other. In a recent issue of The Autism File, Dr. Carr explained the different ways that behavioral research and biomedical research can intersect. This article teaches parents some practical applications. Specifically, I will explain how and why we need to know about pain in children with developmental disabilities (DDs), especially
REPRINTED WITH PERMISSION © THE AUTISM FILE
in those children who are nonverbal or verbally impaired. Then I will show what we can do to help children feel better and reduce problem behavior. “Mommy, my tummy hurts,” is a phrase frequently heard in the households of typically developing children; it tells parents that their child is in pain or discomfort, and where this pain is coming from. It gives a parent direction regarding what to do next. The parent may start trying to find answers to a series of questions such as, “Is there a fever?” “Should we skip school today?” and “Do we need to go to a doctor?” Almost every parent experiences this process on a regular basis – that is, assuming that the child has the verbal ability to communicate this pain. In the recent past, parents and professionals alike assumed that if an individual could not express pain, he or she was not experiencing pain. The consequence of this belief was a tendency to dehumanize those with disabilities and to treat them inhumanely. There is now a growing field of research on pain in nonverbal or verbally impaired people that is offering helpful alternatives to those beliefs. Assuming that your child is like other children and frequently experiences pain and illness, the question becomes, “How do I know when my child is experiencing pain?”
www.autismfile.com
10 • THE AUTISM FILE USA 35 2010
education & therapies
This is a question that researchers are just beginning to answer. Fortunately, there are several free questionnaires that provide a series of questions about common behaviors that may indicate pain. One such measure is the Non Communicating Children’s Pain Checklist Revised (NCCPC-R; Breau & Burkitt, 2009), which is available at: http://www.aboutkidshealth. ca/Shared/PDFs/AKH_Breau_everyday.pdf. Questionnaires such as the NCCPC-R can help guide parents and those who work with verbally impaired children in understanding the level of pain or distress that their child is experiencing. Parents can then respond appropriately to the pain. Although your child may not be able to speak, he or she experiences pain or discomfort like everyone else. In general, children experience pain and illness often, and children with autism experience it just as frequently (and many researchers argue that these children actually suffer more from illnesses). If your child can’t express his or her pain, then you may help him or her greatly if you learn to guess when your child is in pain. The questionnaires can help with this process. Assuming we can determine when a child is in pain, how can we treat that child? The first step is to seek medical help when appropriate. If your child is suffering from a chronic illness that is causing pain, a doctor may be able to reduce or eliminate it. Therefore, as a parent, you can use the questionnaires to assess when and in what circumstances your child is in pain; then you may be able to help the doctor diagnose the problem, which will lead to more effective and quicker treatment. Beyond seeking medical treatment, you can help your child by responding to the pain appropriately. What is “appropriate”? Imagine the parents of a typically developed child who find out that their child has a fever. What would those parents do differently on that day? Would they give their child medicine? Would they send their child to school? Would they insist that the child clean his or her room? When put this way, the answer seems simple and obvious but, in real life, it can be easy to forget these simple approaches, particularly when your child does not communicate his or her pain. Being on the lookout for pain, recognizing the pain, and acknowledging this pain can therefore help you to respond appropriately to it. Doing this can not only make your child feel a little bit better, but it can also help to reduce or eliminate the problem behavior that may result from the pain. Behaviorists often work by trying to understand the reasons for a behavior. For example, if Billy is told to do his homework, throws a tantrum, and then is allowed to escape from his homework, we could guess
www.autismfile.com
that Billy throws tantrums because he hates to do his homework, and tantrums get him out of homework. We can then treat the tantrums by either helping Billy to like his homework more, or by making it so that tantrums won’t get him out of his homework, or by some combination of both. We could also remove the demand entirely, although in the case of homework, this is probably not a good long-term solution. For simple problems like Billy’s tantrums, behaviorists usually have a clear and simple approach. However, coming up with a solution to eliminate or reduce problem behavior is more difficult when the problem behavior seems random. When behavior seems to occur randomly, it often means that there is more going on than what we are aware of. In this situation, internal factors such as pain and illness should be considered. Sometimes a trigger for problem behavior can occur nine times without causing a problem, but the tenth time the problem behavior appears. As a result, it may become difficult to predict the behavior and change the environment accordingly. Towards the end of his career, Dr. Carr was very passionate about solving these problems using a concept called setting events. Setting events (such as pain, illness, discomfort, fatigue, sadness, and anxiety) are events that make a behavior more or less likely to follow a known trigger. For example, consider a typical husband and wife, Jim and Mary. Mary typically asks Jim to take out the garbage when he comes home and, normally, Jim grumbles a little, but takes out the trash anyway, which Mary then responds to by giving him a kiss and asking him about his day. One day, Jim starts to feel the flu coming on. He is groggy all day and comes home exhausted. Now Jim is fatigued and cranky. When Mary asks him to take out the trash, he snaps at her, which results in an argument. In this example, Jim’s fatigue and discomfort is the setting event that changes the equation. Something that used to be a mild annoyance becomes intolerable to Jim and, as a result, he reacts in a much more severe manner. Fortunately for Jim and Mary, he may be able to explain himself and smooth things over. Imagine a similar situation for a nonverbal child with autism who has no way of telling his teacher or caregiver that he is too sick to point to a triangle that day. In this situation, a child who normally feels no need to escape from demands will use whatever tools at his or her disposal to escape. These tools are often problem behaviors, such as hitting, screaming, biting, or self-injury. Unfortunately, chronic illness is common among children with developmental disabilities and, because
In the recent past, parents and professionals alike assumed that if an individual could not express pain, he or she was not experiencing pain. The consequence of this belief was a tendency to dehumanize those with disabilities and to treat them inhumanely.
REPRINTED WITH PERMISSION © THE AUTISM FILE
THE AUTISM FILE USA 35 2010 •
11
education & therapies
Towards the end of his career, Dr. Carr was very passionate about solving these problems using a concept called setting events. Setting events (such as pain, illness, discomfort, fatigue, sadness, and anxiety) are events that make a behavior more or less likely to follow a known trigger.
Reference Breau, L. M., & Burkitt, C. (2009). Assessing pain in children with intellectual disabilities. Pain Research & Management, 14(2), 116-120.
12 • THE AUTISM FILE USA 35 2010
we are not always aware that a nonverbal child is in pain, the illness may go untreated. Thus, it is important for caregivers, teachers, and behavioral workers to be aware of the possibility that chronic illness may be playing a role in problem behavior. By taking into account factors such as ear infections, menstrual pain, sleep disorders, allergies and other types of chronic illness, behaviorists, parents, and teachers can take steps to reduce demands on sick days or at sick times, in the same way that we would with any typically developing child. If we know that illness contributes to problem behavior, we may be able to do something about it. Towards this end, three basic strategies can be used: avoid, mitigate and cope. If Billy normally does his homework without a problem, but throws a tantrum when asked to do his homework on sick days, we may be able to help Billy by letting him skip homework when he is feeling sick, or at least putting it off until he feels a little better. Thus we learn to avoid the trigger for the behavior altogether on days that we believe it will result in the problem behavior. Effective medical treatment also falls into this category as it helps to avoid this negative situation altogether. An alternative to avoiding the problem situation is to mitigate the situation by making Billy’s homework easier on sick days, or by coming up with other pleasant or relaxing things for him to do in addition to his homework. The main goal of mitigation is to change the situation so that, on balance, it will be as conducive to good behavior as possible. Since Billy is upset, but he still needs to do his homework, we mitigate by cheering him up in other ways, and hopefully homework won’t be so bad. Lastly we can consider working on coping, which
REPRINTED WITH PERMISSION © THE AUTISM FILE
involves teaching children the skills they need to cope with pain and illness, such as asking adults for help, comfort or medicine when needed, or learning to breathe deeply to calm themselves down. Coping may also involve teaching children (possibly with pictures) that the pain is only temporary and that it will go away over time. If these approaches all sound like common sense, they are. They may seem so obvious that you are wondering why even bother listing them. Most parents of typical children perform any combination of these approaches without even thinking. They do them because their children ask them to. However, when working with verbally impaired children, we do not have the luxury of having a child tell us exactly what they need, and so it becomes very easy to be unaware of a child’s needs. Unfortunately, this does not make these needs go away, so it becomes necessary for parents to ask themselves, “What might my child need, and how can I give it to him or her?” Avoid, mitigate and cope are excellent starting points to answering the second part of that question. All children have needs, but not all children can communicate those needs to us. When this is the case, we must take steps to be more responsive. In the case of pain and illness, we can become more responsive by learning to assess for pain by observing behavior. We can then use this information to avoid making excessive demands on children when they are unable to comply. In addition, we can mitigate or improve stressful situations and teach children to cope with the difficult realities that we can’t change. Taken together, these steps may only solve some problems, but they may improve the quality of your child’s life as well as those of other family members.
www.autismfile.com
