Chapter 2 of Sleep Better! A Guide to Improving Sleep for Children with Special Needs, by V. Mark Durand, Ph.D.

Copyright © 1998 by Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

O sleep! O gentle sleep! / Nature's soft nurse, how have I frighted thee / That thou no more wilt weigh my eyelids down / And steep my senses in forgetfulness?

—William Shakespeare, King Henry IV, Part II

King Henry IV's longing for sleep seems at odds with modern-day society's desire to wring the most out of a day. Many of us are trying to do more with less sleep. Many more people yearn to sleep better, but, for a variety of reasons, they cannot. Some have difficulty falling asleep or have their sleep disturbed frequently throughout the night. Others feel tired even after what seems to be a full night's sleep. Still others may encounter a number of abnormal sleep experiences, such as frequent and disturbing nightmares, sleep terrors (which at first resemble nightmares but are a very different sleep disturbance), sleepwalking, or sleeptalking. This chapter addresses the many ways in which sleep can be disrupted, along with what is known about the causes of these problems.

How Common Are Sleep Problems?

You may be surprised to learn that as many as one of every four otherwise healthy adults experiences significant problems with sleep. At the same time, a similar ratio of children experience sleep problems. What is most alarming is that sleep problems seem to occur more often in people with special needs. As if life were not complicated enough, adding a sleep problem on top of all of the other difficulties can make getting through each day a greater challenge for people with special needs as well as for their families and friends.

People with autism may be among the most seriously affected when it comes to sleep problems; some research1 suggests that almost all of these individuals experience difficulty with sleep at some point in their lives. A survey2 of children with a range of developmental disabilities found that about 80% of parents reported some problem with their child's sleep and that one in four described the problem as severe. To make matters worse, the parents also indicated that, unlike children without disabilities, their children did not seem to grow out of these sleep problems and that their sleeping difficulties persisted into adulthood. Sleep problems commonly occur among children with a variety of disorders, including Tourette syndrome, Rett syndrome, and cerebral palsy.

Problems with sleep can be a sign of other problems. Nightmares, sleep terrors, and other problems with sleep are commonly reported among children and adults who have been victims of abuse or other traumatic events. Obviously, this does not necessarily mean that a sleep problem is a sign of past or current abuse but simply that these upsetting episodes can increase the likelihood of sleep problems in the affected person. Even something as apparently unrelated as marital discord can disrupt the sleep of the couple's children.

Sleep is often reported as a problem for children with attention-deficit/hyperactivity disorder (ADHD). ADHD affects an estimated 3% of all children3 and results in difficulties with attention; for many children, it also involves impulsivity and hyperactivity. The most common treatment for these children is a medical one--typically a stimulant medication such as Ritalin. Parents of these children often lament that their children develop sleep problems after being placed on this type of medication. (How to balance the medication needs of these children with their sleep needs is described in Chapter 12.) Research4 suggests that sleep problems among children with ADHD may be overreported by some parents, meaning that they may expect their children to have disturbed sleep because of the medication and therefore inaccurately relate these problems. It is clear, however, that many children with ADHD require assistance with their sleep.

How Serious Are Sleep Problems?

As you can see, many groups of people with special needs experience disturbed sleep. In addition to the sheer number of people who have difficulty with their sleep, the effects of sleep on behavior also contribute to the concern of families and professionals. For example, disturbed sleep has a negative impact on performance during certain tasks--motivation to work decreases, and the ability to concentrate becomes impaired. Similarly, people who have not had enough sleep often report feeling irritable or depressed. What can be said, then, about the effects on people with special needs--especially those who have difficulty learning and carrying out daily tasks?

Unfortunately, research that examines the effects of sleep problems on people with special needs is rare, so there is very little direct knowledge about how they may be affected. Some general conclusions can be made, however, based on research usually conducted on adults without disabilities. It is important to note that one night of disrupted sleep probably will have a minimal effect on a person's ability to carry out daily tasks. That is good news because, occasionally, all of us experience a night when, because of anxiety over a presentation that you have to give, the cup of coffee that you enjoyed too late at night, the excitement over a trip the next day, or even just being anxious about not falling asleep, we sleep very little. Despite being tired, we are able to get through the day relatively well. Should this disturbed sleep persist for more than a day or two, however, noticeable effects are likely. Persistent and chronic sleep disturbances will cause a decline in motivation or concentration as opposed to a loss of ability. As motivation decreases, concentration is impaired, and performance errors increase. People involved in boring, repetitive tasks will show the effects of a poor night's sleep more readily than will those involved in interesting and challenging tasks. Consider this in light of how we tend to treat children and adults with special needs. A person who has difficulty learning new skills (e.g., a person with mental retardation or learning disabilities) is usually given an easier and therefore sometimes boring and repetitive task until he or she is considered "ready" to move on to more challenging work. If the person also experiences sleep problems, then his or her difficulty at work will be made worse by performing the same unchallenging work over and over. You can see that we may mistakenly attribute errors on schoolwork or at a job to the person's cognitive difficulties, when this problem may be a result, in part, of sleep problems and our lack of understanding of its effects on a person's performance.

Sleep also affects our emotional well-being. In research with young children, it has been found that sleeping longer is associated with adaptability (being able to tolerate changes in routines) and positive mood, whereas sleeping less is associated with children described as "difficult"--those who get upset when you try to change routines and who always seem irritable5. One young boy with whom I worked was referred because he lacked motivation in class and was generally noncompliant of his teacher's requests. The boy had mental retardation requiring extensive supports, and the teacher seemed to assume that his difficulties were related to his diagnosis. After watching him at his desk in class for a few minutes, I turned to his mother, who also was watching, and said, "He doesn't sleep very well, does he?" His mother was astounded that I knew that without her having told me, and his teacher was even more astounded because she did not know herself that the boy slept only 3-4 hours each night. They both looked at me with awe at my remarkable clinical skills and asked how I knew this after seeing him for only a few minutes. I ruined the adulation when I said, "Well, he looks tired!" This story highlights not only how a lack of sleep can affect mood and behavior (which, fortunately, improved in this boy when his parents and I helped him sleep better--the full details of which are described in Chapter 3) but also how we tend to overlook sleep as an important influence on how we think, feel, and behave.

In some cases, the negative impact of poor sleep can be even more serious. My colleagues' and my own research on people who display self-injurious and aggressive behavior--too often observed among people with autism and other developmental disorders--has revealed that disrupted sleep can make these behavior problems worse6. Not sleeping well can make some people hit themselves or others more often. On a positive note, the occurrence of these very disturbing behaviors can be reduced by improving the affected person's sleep.

A final measure of how serious these sleep problems can be is easily seen in the families of people with disrupted sleep. In some cases, couples' marriages have been threatened because of their child's sleep problems. Depression among parents--especially mothers--also is common in these families. The cause of these problems at home can be traced to several factors. First, a child's disturbed sleep invariably means that the parents' sleep also will be disrupted. Getting up with your child each and every night for months and years means that both you and your child will be sleep deprived. You have just learned that your ability to concentrate and your mood will be affected in a negative way if you are not sleeping well yourself. In addition, the psychological research literature shows that depression can occur when people feel that they have no control over important parts of their lives7. People begin to feel helpless, and they give up trying to improve this nighttime problem. My colleagues and I worked with one mother whose child awakened and cried each and every night for 7 years. She had long ago given up hope that anything could be done to help them get a good night's sleep and felt guilty that she could not help her child. Obviously, sleep disturbances can have negative consequences for everyone who is in some way touched by this vexing problem. Fortunately, we were able to help this family despite their long history of sleep problems.

When Does Sleep Become a Problem?

Chapter 1 mentioned that people have different sleep needs. Some people can sleep for only 3-4 hours per night and feel rested and refreshed. Others can sleep for 9-10 hours and still feel tired the next day. This issue of sleep differences raises an important question: If people have different sleep needs, then how do you know whether a child's inability to sleep more than a few hours per night is a sleep problem or just a normal difference? You might be surprised to learn that sleep experts rely heavily on the subjective impressions of the person with the sleep complaint. In other words, if a person sleeps for only 4 hours per night but is not bothered by this and can carry on daily activities, then it is not considered a sleep problem. Conversely, if a person sleeps for an average of 9 hours per night but is still tired during the day and is concerned about sleep, then it is considered a sleep problem. For children, this often translates into how well they function during the day and how disturbing the sleep difficulty is at night. If a child appears tired and irritable even after 8 hours of sleep, then he or she may have a sleep problem. Similarly, if bedtime is disrupted (e.g., the child cries for 20 minutes or more each night) or night waking is a problem (e.g., screaming out each night), then this too may signal a problem with sleep.

Common Sleep Problems

As we turn next to the common sleep problems experienced by people with special needs, bear in mind this subjective quality of sleep. If your child's sleep pattern adversely affects him or her or your family in any important way, then assume that it is significant enough to examine more closely. Keep in mind, too, that there are more than 80 different and distinct sleep problems recognized by sleep professionals--far too many to cover adequately here. Fortunately, only a handful of these problems are commonly experienced by people with special needs. Described next are the most frequently occurring sleep disturbances and some information on their causes.

Insomnia

What image does your mind conjure up when you think of a person with insomnia? Most people picture a person who never sleeps yet who functions well during the day. This is, however, just one more myth about sleep. It is not possible to go completely without sleep for very long. If you stay awake for more than a day or two, then you will begin having brief periods of sleep that last for several seconds--called microsleeps. People with severe insomnia often are unaware that they have these brief sleep episodes and, thus, believe that they never sleep. In addition to experiencing microsleeps, a person who is this sleep deprived will notice significant negative effects on his or her life. Sleep-deprived individuals often have substantial impairments in the quality of their lives and have difficulty getting through even the simplest of life's daily chores. As mentioned in Chapter 1, a complete lack of sleep is catastrophic. One sleep disorder that does involve not sleeping at all is called fatal familial insomnia. As the name implies, this progressive sleep disorder ultimately leads to death for those afflicted, but, fortunately, it is an extremely rare problem.

Insomnia is not one problem but encompasses instead a number of different problems with sleep. Sleep professionals break down insomnia into three different and distinct types:

• Difficulty falling asleep at night (called a difficulty initiating sleep)
  
• Waking frequently during the night or waking too early and being unable to go back to sleep (called a difficulty maintaining sleep)
  
• Not feeling rested even after a reasonable number of hours of sleep (called nonrestorative sleep)
  

As with all of the sleep problems described, a person is considered as having insomnia only when the cause of these sleep disturbances cannot be traced to some other medical or psychological problem. If, for example, a person is not sleeping well because he or she is experiencing pain, then this is not technically thought to be primarily a sleep problem. At the same time, a person who is anxious or depressed will often have difficulty sleeping. If the anxiety or depression is the primary cause of the sleep difficulties, then this is where clinical attention is first paid.

Sleep deprivation, whether it is a result of not being able to fall asleep, of waking up too frequently, or of not receiving refreshing sleep, affects about one third of people with special needs and is the most common of the sleep complaints. It also appears that these sleep problems often will not go away on their own. Although many children do seem to grow out of their early sleep difficulties, many do not; and, as we have learned, these sleep problems can upset the lives of everyone in the family. Examining the different types of insomnia is important because it will lead directly to the causes of these problems and ultimately to their treatment.

Difficulty Initiating Sleep

One of the symptoms of insomnia is difficulty going to sleep at an acceptable time. As many parents know all too well, this can involve quite emotional outbursts from the child. Some children will scream and cry for hours. Others are more subtle in their efforts to avoid bedtime and concoct elaborate routines that involve the whole family. At one point in my home, for example, my son orchestrated an hour-long parade of events that would begin with reading a story, followed by "just one more" story, then hugs and kisses, followed by back scratching. This was then followed by more hugs and kisses. After a few minutes in bed, there was a need for a glass of water. Then a trip to the bathroom. Then another trip to the bathroom. Then the sheets weren't just right, there was a noise outside, it was too hot or cold. . . . Sound familiar? Still other people will just lie awake in bed, not able to fall asleep. These difficulties can stem from a number of different problems.

For some children, bedtime difficulties stem from the inability or the unwillingness of parents to set limits on their children's bedtime. Many parents report that they become extremely upset when their child cries or screams and that anything is preferable to listening to that kind of gut-wrenching, emotional outburst. They find that going into the child's room to comfort him or her or bringing the child into their own bed will end that evening's battle; but, as we all know, this will just postpone the problem until the next night. Worse yet, repeatedly giving in to a child's tantrums could teach him or her to have a tantrum every night, usually in ever-increasing intensity.

It is important to remember that parents are not completely to blame in this case or in any other case of a childhood sleep problem. Although some parents are quite aware of the pattern that develops at bedtime and recognize their role in the situation, they forget that their child has a role as well. Often, parents have to be reminded that many children fall asleep on their own. In other words, some children's sleep patterns are such that the child has no difficulty falling asleep at night and, in fact, seeks out bedtime. The child who resists bedtime may be one who simply is not tired at the time when most of us sleep. An additional difference is temperament. Different children have different personalities or temperaments and will deal with problem situations in their own ways. Some children who are not tired at bedtime may be more easygoing and will therefore do their best to fall asleep after being asked. Other children, however, are more strong willed and feisty, and they put up a fight over most situations. The child who resists being told when to wash up or which clothes to wear may similarly resist your decision about bedtime. If this describes your child, then there is help for you in Chapter 11. Take some solace in knowing that it takes two or more people to create this problem, and there are relatively easy "fixes" that can resolve even the most disturbing bedtime disasters.

Why is it that some people simply are not tired at bedtime? One reason may be what you do, eat, and drink before bedtime. Referred to by sleep experts as sleep hygiene, these are daily living practices that influence your ability to fall asleep and stay asleep. Caffeine in coffee and soft drinks is among the biggest offenders because it can increase your arousal; therefore, you do not feel tired enough to go to sleep. What most people do not know is that caffeine stays in the system for up to 6 hours. This means that drinking a cup of coffee or a soft drink at dinner may very well interfere with a person's ability to fall asleep later in the evening. The nicotine found in cigarettes is, like caffeine, a stimulant, and it too can interfere with sleep. Other stimulants, including the medications Ritalin and Cylert, which are often prescribed for people with ADHD, can interfere with sleep as well. As mentioned in Chapter 1, exercising too close to bedtime (3-4 hours before) can also increase arousal and will hinder attempts to fall asleep.

Even where a person sleeps can keep some from falling asleep easily. For one of my cases, the bedtime routine of a young girl was videotaped to see how the family was carrying out recommendations. This little girl did not cry or scream when she was told that it was time to sleep, but she would constantly come out of her room. The videotape was quite revealing because it picked up the family's television programs and all of their conversations even though the camera was in the little girl's room. It was clear that the girl could hear everything going on with the rest of her family because her bedroom was right next to the family room. Her room was much too noisy for her to fall asleep in at night, especially for someone who was already a light sleeper. Relatively minor changes helped her bedtime problems dramatically. In addition to noise, too much light or even an uncomfortable temperature in a bedroom can prevent a smooth bedtime.

Daytime sleeping is a common cause of bedtime disturbances. Many of the children with whom my colleagues and I work take naps during the day, in part because they have not slept well the previous night. Some sleep on the bus to or from school, others sleep during school, and still others will take a nap at home after school. Naps by themselves are not inherently bad. Leonardo da Vinci is reported to have only napped, sleeping for 15 minutes every 4 hours throughout the day. In fact, many sleep experts recommend that adults take short naps during the day to make up for the sleep that they lose each night. Our "sleep debt" needs to be paid back, and napping may be just the remedy that many of us need. Unfortunately, for some people, sleeping during the day may also affect attempts to fall asleep the next evening. A nap of more than a few minutes can decrease the likelihood that the person will be tired at his or her usual bedtime. This sets up the beginning of what can become a very vicious cycle. Not being able to fall asleep easily that night will make the person tired again the next day, which in turn will create the desire to nap, and the nap will interfere with bedtime once more. At the root of some children's bedtime problems lies their daytime sleeping habits.

A related problem that sometimes is the cause of a lack of sleepiness at bedtime involves the different patterns, or "phases," of sleep that we prefer. Chapter 1 discussed how some people are larks (those who prefer waking early and going to bed early) and others are owls (those who prefer sleeping late and staying up late). The approximately 10% of people who are owls will not be tired at the usual bedtime because of the differences in their circadian rhythms. For children who are owls, this may result in a resistance to go to bed. Chapter 7 discusses some very intriguing new techniques for helping people shift their sleep phases to more closely match the desired sleep times.

Children's anxiety surrounding bedtime can be a vexing problem for parents. Children often will refuse to go to sleep at night because they are afraid of the dark, because some monster is waiting for them under the bed, or even because they are afraid of having bad dreams. When children cannot talk, parents often wonder whether their resistance to bedtime is a result of fears and anxieties. One of the first challenges for helping a child who reports being afraid of going to sleep is determining how real the anxiety is. Children often are quite creative in figuring out just what to say at bedtime to get the parent into the room. A friend of mine had a great deal of difficulty getting his daughter to go to sleep at night. She complained that monsters might hurt her after the family fell asleep. Using a bit of ingenuity, my friend went to the store and bought a quite elaborate "magic wand" for his daughter. He explained to her that the wand had special powers and that if any monster tried to get her, she could make it disappear with one wave of the wand. This worked well for less than a week. His daughter then began a nightly ritual of asking for water, a back rub, to be tucked in, and so forth. In other words, it appeared that the reports of monsters may have been a conscious or unconscious attempt to get her father into the room; when the wand took away that method, she found a different way. The problem is that because we cannot get inside the head of this little girl, we will never know whether her fears were real and whether she just began the new ritual to allay those fears in a new way or to obtain more of her parents' attention at night.

Children with a history of abuse or who have experienced other trauma often have very frightening dreams, and bedtime can become associated with a great deal of apprehension. Just as many of us associate a physician's office or a hospital with unpleasant events, these children learn that bed and sleep are linked to their bad dreams and are things to be avoided. Children who have problems with bedwetting also may avoid bedtime for the same reason.

Finally, giving medication to children to get them to sleep at night may quickly become the source of a sleep problem. Many parents of children with special needs have at some point been told to give their child some type of sleep-inducing medicine--often the antihistamine Benadryl, which produces sleepiness as a side effect. Pediatricians often will suggest this medication because it can help a child go to sleep quickly at bedtime and can prevent many of the bedtime disturbances just described. The problem with Benadryl and many of the other medications used to induce sleep is that when parents try to stop using it, it can actually make sleep worse than before. The phenomenon of worsening sleep after medication withdrawal is called rebound insomnia and is sometimes the cause of nighttime disturbances in children. Medication for sleep, especially among children, typically is not recommended for long-term use, in part because it can make a bad sleep problem worse.

Difficulty Maintaining Sleep

I once heard someone say that bedtimes are for parents. Whether a child goes to bed at 8:00, 8:30, or 9:00 p.m. may be less important for the sleep needs of the child than for the mental health of the parents. Parents work hard, and, as much as we love our children, we do need a little break away from them at the end of the day. It is a cruel twist of the natural order of things, then, that just as parents begin to unwind and relax, their child awakens prematurely from sleep. Or worse, just as parents find themselves deep in sleep, the cries of their child snatch them back to reality. This is especially difficult for parents who may have just battled with their child for more than an hour to go to sleep in the first place.

Along with bedtime problems, night waking is among the most common sleep problems experienced by children. Like bedtime disturbances, night waking can be caused by a number of factors. Many times, night waking can be traced to a child's earliest years. Chapter 1 described how all of us go through "partial wakings" throughout the night. These are brief periods in our sleep cycle when we awaken but then immediately go back to sleep and have no memory of them the next day. It is thought that, particularly for children who do not fall asleep on their own at night, children's disruptive night waking originates from these partial wakings. Imagine an infant who is being held in her mother's arms and who falls asleep. The mother places the child in a crib, turns off the light, and leaves the room. An hour later, the infant experiences a partial waking, but instead of being in her mother's arms, she is now in a dark room, alone in a crib. This unfamiliar situation may be disturbing enough to cause the child to cry out. Further imagine that you are the child's parent and that you are a first-time parent or that this child has been ill or has some other problems. Your child's crying will cause you some concern, and you are likely to go into her room to determine whether she is all right. Your child, who may have been only partially awake, is now more fully awake at seeing you in the room. You comfort your child, maybe even hold her in your arms until she falls asleep again, and then you go back to sleep.

What seems to happen in this very common scene is that the child does not learn to fall asleep alone. The child may fall asleep only with a parent in the room or with music playing in the background. When he or she wakes up during the night and the scene has changed dramatically, it can be frightening, and it is more difficult to fall back to sleep. Crying out as a strategy is further reinforced because it brings the parents back into the room. So, instead of learning how to fall back to sleep alone after one of these awakenings, the child learns to get the parent back to re-create the comforting scene that he or she had grown used to. Sadly, many children learn one more stage to this episode. After many nights of this, some parents recognize that they should not be going into their child's room, and they try to ignore the cries. This obviously is upsetting to the child, so she cries longer and louder. At some point, most parents give up because they cannot stand to hear their child so upset. Unfortunately, what the child has now learned is that the next time her parents do not come into her room right away, cry longer and louder because if at first you don't succeed. . . . As you can see, disruptive night wakings can originate from these first experiences with partial wakings.

Early feeding practices also can lead to night wakings in a number of different ways. One reason that this occurs is because, as just described with a parent's presence when the child falls asleep, the child may learn to associate going to sleep with feeding. This often begins in infancy, when the child is fed just before sleep. By the age of about 3 months, children no longer need to be fed at bedtime or at times throughout the night; however, often parents enjoy this closeness as the child goes off to sleep, or their child's occasional awakenings make them feel that the child is hungry. Because of these reasons, bedtime and nighttime feedings frequently will continue well beyond 3 months of age. What can take over is the cycle of awakenings followed by the parents' coming into the room and feeding the child. Nighttime feedings also can disrupt sleep by activating the digestive system at a time when it should be dormant. In addition, consuming liquids can cause the desire to urinate, which can contribute to awakenings. Night waking often results from a combination of being a light sleeper and practicing learned patterns of falling asleep.

In addition to the learning that can go on surrounding these night wakings, certain medical problems also can contribute to nighttime disturbances. Conditions such as colic, urinary tract or middle-ear infections, congestion, or any other condition that is uncomfortable or painful for the child will disrupt sleep. The side effects of certain medications such as antihistamines or antibiotics also can contribute to night waking. On rare occasions, parents will give children a small amount of alcohol at bedtime to induce sleep. Although alcohol will make a person drowsy, it also has a disruptive effect on sleep such that night waking often is increased. These conditions, combined with how parents respond to night wakings, can result in a pattern of chronic nighttime disruption.

Nonrestorative Sleep

Some people sleep for what appears to be an acceptable amount of time yet do not feel rested the next day. They may have a very difficult time getting going in the morning and feel tired during the day. Some children will sleep from 8 to 10 hours per night yet still take naps during the day. Usually this is a sign that the child's sleep is being disrupted during the night, even if he or she is unaware of it. A number of medically related conditions can lead to this problem. One of the more common causes involves problems that people experience with breathing as they sleep. In extreme cases, people will stop breathing for several seconds at a time throughout the night in a condition called sleep apnea. Less dramatic, many people have obstructed breathing, which can disrupt the normal progression of sleep stages. Like the partial wakings, this sleep disruption brought on by breathing problems often goes unnoticed by the person affected yet can interrupt sleep enough to leave the person feeling unrested the next day. Children may not display excessive sleepiness during the day but may, instead, be more irritable, be hyperactive, or have trouble concentrating. Sleep apnea and related breathing problems are described later in this chapter.

Sleep and seizures (sudden and unpredictable discharges of electrical activity in the brain) are related. Given that both involve electrical activity in the brain, it should not be surprising that sleep can activate certain types of seizures. Seizures during sleep often do not cause the person to awaken fully, but, like breathing problems, they can disrupt sleep enough to cause daytime drowsiness. This condition is further complicated when the person is taking anti-seizure medication because this medication can contribute to daytime drowsiness as well. Medication for asthma symptoms, especially if taken close to bedtime, also can disrupt sleep and be a cause of sleepiness during the day.

Hypersomnia and Narcolepsy

The word insomnia means "not enough or insufficient sleep." We have seen that insomnia covers a variety of problems that all involve not getting enough sleep. Hypersomnia, conversely, refers to getting too much sleep. Hypersomnia and a related sleep disorder called narcolepsy involve sleeping excessively during the day despite getting sufficient sleep at night. People find themselves falling asleep, sometimes at very inconvenient times, even after a night of 8-10 hours of sleep. Both hypersomnia and narcolepsy are relatively rare--occurring in less than 1% of the general population--but they can be very debilitating to the person afflicted.

Very little is known about what causes hypersomnia. Family history of this sleep problem seems to be common, with about 40% of the people with this problem having a family member who also has hypersomnia8. This suggests that one's genetics may be involved in its cause, at least among some of the people who experience this problem. One additional finding about hypersomnia is that a larger proportion of people with this sleep problem than you would expect seem to have a history of having the infectious disease mononucleosis. Unfortunately, it still is not fully understood how genetics or mononucleosis is involved in the development of hypersomnia.

There is more information about narcolepsy, a sleep problem that also involves excessive sleeping during the day. The symptoms of narcolepsy take on a more dramatic quality than those involved in hypersomnia. A person will be awake and alert one minute and slump down to the floor and be fast asleep the next. In addition to falling asleep, people with narcolepsy experience a sudden loss of muscle tone (called cataplexy). This loss of muscle tone seems to be caused by the sudden onset of REM sleep. If you remember, REM, or dream, sleep typically begins approximately 60-90 minutes after we fall asleep. This is also a time when we are relatively paralyzed, not able to move any of our major muscles. What appears to happen in people with narcolepsy is that their daytime sleep attacks involve an immediate transition into REM sleep, along with the accompanying paralysis.

Therefore, their head might fall to one side, they may slide down in their chair, or they may even fall to the floor as a result of this immediate transition to REM sleep. Another aspect of these sleep attacks is that people often report that they occur in the middle of some emotional event. People have been known to be watching their favorite sports team on television and, just at a crucial score, fall fast asleep!

Two other unusual events surrounding sleep affect people with narcolepsy. First, these individuals often report experiencing sleep paralysis, which is a brief period of time upon awakening when they cannot move or speak. As you can imagine, this feeling of not being able to move or speak can be quite frightening to these individuals. It is important to note that sleep paralysis occurs occasionally to people who do not have narcolepsy, although it is more common among people with this sleep problem. Second, these individuals experience hypnagogic hallucinations. These hallucinations are particularly vivid experiences that occur during sleep and are said to be unbelievably realistic because the person experiencing them perceives not only visual stimuli but also the full range of the senses, including touch, hearing, and even the sensation of body movement. People have retold stories, for example, of being in a house on fire and being able to smell the smoke and feel the heat.

Before we examine the causes of narcolepsy, it is intriguing to note that sleep paralysis and hypnagogic hallucinations have been used to explain a most unusual phenomenon--UFO experiences. As you know, people routinely report seeing unidentified flying objects and also more active incidents including being abducted by aliens. In an interesting study9, researchers questioned people who had had these experiences and separated them into two groups: those with more passive reports, such as just seeing lights in the sky, and those with more active experiences, such as seeing and communicating with aliens. The researchers found that a majority of these experiences occurred at night, and 60% of the more active events were said to have happened during sleep. When you examine their reports, the people with these active experiences describe events that resemble the frightening episodes of sleep paralysis and hypnagogic hallucinations:

I was lying in bed facing the wall, and suddenly my heart started to race. I could feel the presence of three entities standing beside me. I was unable to move my body but could move my eyes. One of the entities, a male, was laughing at me, not verbally but with his mind. He made me feel stupid. He told me telepathically, "Don't you know by now that you can't do anything unless we let you?"10

The realistic and frightening stories of people who have UFO sightings may not be the products of an active imagination or the results of a hoax, but, at least in some cases, they may be a disturbance of sleep. Sleep paralysis and hypnagogic hallucinations do occur in a portion of people without narcolepsy, which may help explain why not everyone with these "otherworldly" experiences has narcolepsy.

Knowledge about the causes of narcolepsy is growing, and it appears that this sleep problem has biological origins. Specifically, it seems clear that narcolepsy is influenced by one's genetics. The first clues about the genetics of narcolepsy came from a most unlikely source--man's best friend. Some years ago, the highly regarded sleep researcher Dr. William Dement was lecturing to a group at the American Academy of Neurology in Boston. In the audience was a veterinarian who commented that he had observed a miniature poodle named Monique who seemed to display the same symptoms of narcolepsy that Dr. Dement was describing about his human patients. Intrigued, Dr. Dement requested that Monique be flown to his sleep laboratory at Stanford University for further study. It was there that he discovered that the dog had a disorder identical to narcolepsy in humans. As a result of this chance encounter, researchers have been able to identify that Doberman pinschers and Labrador retrievers also inherit this disorder and that it may be associated with a cluster of genes on chromosome number 6. Further work with humans is needed to identify the exact cause of this problem, in hope that it leads to more effective treatments.

Breathing-Related Sleep Problems

Sleepiness during the day that is the result of disrupted sleep at night sometimes is caused by physical problems. A common physical problem that disrupts the sleep of approximately 1%-2% of us involves difficulty breathing during sleep. For all of us, the muscles in our upper airways relax somewhat as we sleep, and this makes breathing a little bit more difficult. Unfortunately, this constriction of breathing is more pronounced in some people, and it can cause very labored breathing during sleep (called hypoventilation). As a result of breathing difficulties, these people will experience numerous brief episodes of being awakened during the night, although the person will not be fully awake and probably will not remember the episodes. Because they are not sleeping deeply, however, they do not feel rested the next day even after 8 or 9 hours in bed. In the most extreme cases, some people will have short periods of time during sleep when they stop breathing altogether--sometimes up to 10-30 seconds--which is referred to as sleep apnea.

Although immediate signs of breathing difficulty may not be obvious to anyone other than a bed partner, there are other important indications. Loud snoring sometimes is a sign of breathing difficulty. Also, heavy sweating during the night, morning headaches, and episodes of falling asleep during the day may be evidence of breathing problems during sleep. These breathing difficulties occur more often in people who are overweight, perhaps because of increased pressure on the airways. If breathing difficulties are suspected of being the cause of a sleep problem, then a medical evaluation is essential.

Sleep Schedule Problems

The artist Edward Hopper often painted people at the extremes of the sleep-wake cycle. In Morning Sun, a woman is pictured fully dressed anxiously looking out of her window at dawn's light. In sharp contrast is Nighthawks, which depicts a couple lingering over their coffee at an all-night diner. What makes our sleep schedules so different? Chapter 1 described how our biological clock informs the brain to help us sleep at night and to help us wake up in the morning and that light from the sun resets this clock each day so that we go through about a 24-hour cycle--known as a circadian rhythm. Unfortunately, sometimes this process is disrupted, and people sleep at times when they want to be awake and are awake at times when they want to be asleep. Unlike with insomnia, whereby people may have trouble sleeping, people with sleep schedule problems may sleep fine but at the wrong times. They may awaken fully alert at 4:00 a.m. and have nothing to do, then fall asleep later that day at 8:00 p.m. despite wanting to be awake. Others cannot fall asleep at night and then cannot get up the next morning. More than just an inconvenience, being "out of sync" can cause these individuals to be tired and have difficulty concentrating during the day when they try to fight their body's desired schedule. These sleep schedules usually do not fit with our typical school or work schedules, and these activities can be seriously disrupted.

You have already experienced what this can be like if you have flown across several time zones in a day and have felt "jet-lagged." People who are jet-lagged usually report difficulty going to sleep at the proper time, as well as feeling fatigued during the day. Certain people seem to be more negatively affected by time zone changes, including older adults, introverts (loners), and early risers (morning people). Repeated travel such as this disrupts the sleep of people so much that they can experience serious and chronic sleeping difficulties.

Another group of people who experience these types of sleep problems are people whose work schedules do not allow them to sleep at night. Many people, such as hospital employees, police, or emergency personnel, must work at night or work irregular hours; as a result, they may have difficulty sleeping or may be excessively sleepy during waking hours. These problems can become more serious, with reports of gastrointestinal symptoms, increased potential for alcohol abuse, low worker morale, and the disruption of family life being more common among these shift workers.

In addition to these self-imposed causes of circadian rhythm sleep problems, there are people who experience the same symptoms because of more internal, although as yet not completely understood, causes. Extreme "night owls," or people who stay up late and sleep late, may have a problem called delayed sleep phase syndrome, a type of circadian rhythm disorder. Falling asleep is "delayed," or occurs later, compared with a typical bedtime. At the other extreme, people with an advanced sleep phase syndrome are very early to bed and very early to rise; sleep is "advanced" in relation to a typical bedtime. Not going through the 24-hour phase of sleep and wakefulness--called non-24-hour sleep-wake syndrome--disrupts the lives of a significant number of people. For a variety of reasons, individuals with this sleep problem follow a 25-hour phase and are constantly changing the time when they sleep. Recall that we examined how people with severe visual impairments (blindness) often experience this problem and how they go through very difficult phases in which they want to sleep during the day and stay awake at night.

People with delayed sleep phase syndrome (night owls) often seem to develop the difficulty as a child or adolescent, staying up later and later at night and then sleeping late the next morning. Conversely, those with advanced sleep phase syndrome seem to develop the problem later in life, perhaps as part of an acceleration of their biological clocks. Two related causes of these sleep schedule problems are being explored. Chapter 1 described how the brain chemical melatonin seems to be involved in resetting our biological clock. It is believed that for some people who have sleep schedule problems, their production of this hormone may not be sufficient to trigger the brain to begin sleep.

The second area of study for people with sleep schedule problems involves sunlight. Recall that the hormone melatonin, which seems responsible for signaling sleep, is produced deep in the brain by the pineal gland. In some animals, particularly some birds and reptiles, the pineal gland is so close to the top of the skull that it can detect light from the sun directly and transmit this information to other parts of the brain. This ability has earned the pineal gland the label "the third eye" in these animals. Our pineal gland, because it cannot detect light directly, is connected to the nerve fibers in our eyes. As our eyes take in less and less light in the evening, the pineal gland begins producing melatonin, which, in turn, triggers our sleep. If we do not receive sufficient light cues, however, then this elaborate system does not work as it was designed, and our sleep is disrupted. There is one group in which this problem is quite evident: people who live in extreme northern latitudes. The low levels of light to which people are exposed in the winter months seem to interfere with melatonin production and can wreak havoc on sleep schedules. Chapter 7 discusses how bright lights can be used to help "jump start" this light-melatonin mechanism to help someone sleep better.

Nightmares

The British author Robert Louis Stevenson is said to have suffered greatly from nightmares as a child. Fortunately, he turned this malady into creative success by using one of his nightmares as the basis of his famous book The Strange Case of Dr. Jekyll and Mr. Hyde. We all, from time to time, have had a dream that was frightening or distressful. You dream that someone is about to kill you, that you are running away from some threat but cannot run fast enough, or that you are back in school and cannot find the room where the big final exam is being held. These dreams are so frightening that you awaken feeling very upset and can usually remember at least part of the dream. For some people, these nightmares can impair their ability to carry on daily activities. Recurring nightmares can lead to disrupted sleep, primarily because the person begins to fear bedtime.

"Bad dreams" are almost universal phenomena. Severe and recurrent nightmares also are common, occurring in as many as 20% of children and 5%-10% of adults11. As with most of the other sleep problems that have been discussed, there is little information about the frequency of nightmares among people with special needs. One exception is among children with histories of abuse, who do report much higher rates of nightmares than others.

You would expect that because nightmares are so common, a great deal of research would have focused on their causes. Unfortunately, very little is known about why people have nightmares. One study, however, suggests that any form of trauma, even emotional trauma, may contribute to an increase in nightmares12. This study looked at how the 1989 earthquake in San Francisco affected people who lived through the event. The researchers compared students from Stanford University and San Jose State University, who experienced but were not hurt by the earthquake, with students from the University of Arizona, who were unaffected by the quake. They found that about 40% of the students who experienced the earthquake reported nightmares, whereas only 5% of the students in Arizona reported having nightmares during the same period of time. One of "nature's experiments" allowed researchers to examine how trauma can directly influence nightmares.

Sleep Terrors

One evening some years ago, my peaceful and as-yet-uneventful night's sleep was shattered by the blood-curdling screams of my then 3-year-old son. The screaming and crying continued as my wife and I raced to his room. Although it took only a few seconds to reach him, a thousand thoughts of the most horrendous nature went through our minds. Was he being attacked? Was he stricken by some hideous disease that would soon strike him down? What could possibly make him scream like that, a scream that we had never heard from him before? We stumbled into his room to see him sitting up in his bed, still in a panic. My wife and I competed to be the one to hold and comfort him, finally able to rescue him from what then looked like a bad dream. This was different, however. We were not able to comfort him as we had in the past when he had had a nightmare. In fact, we seemed to become the enemy. The unspeakable horror was projected on us as he fought our efforts to soothe him. Minutes seemed like hours until he finally stopped screaming and went back to sleep in his bed. Although my wife and I worried that this was the harbinger of some dreaded affliction, the next morning my son was his same cheery self, seemingly unaware and unscathed from the evening's trauma.

This scenario, which was repeated several more times in my son's early years, describes an experience of sleep terrors (sometimes referred to as night terrors, although they can occur during daytime naps as well), a sleep problem that is often mistaken for a nightmare. Called incubus in adults and pavor nocturnus in children, these sleep attacks usually begin with a piercing scream. The person appears extremely upset, often is sweating, and frequently has a rapid heartbeat. Sleep terrors look like nightmares because the child (it most often occurs among young children) cries and appears quite frightened; however, sleep terrors occur during NREM, or nondream, sleep and are therefore not instances of frightening dreams. In addition, during sleep terrors children cannot easily be awakened or comforted as is possible during a nightmare. In the case of sleep terrors, children do not remember the incident, despite its often dramatic effect on the onlooking parents.

About 5% of otherwise healthy young children experience sleep terrors at some point in their lives13, and a small percentage of adults also have these attacks. It is not yet known how often people with special needs endure these types of sleep problems, although my experience has been that they are at least as likely to occur in this population as well.

Very little is known about the cause of sleep terrors. Early thinking was that psychological stress during the day brought on these attacks in some people, although research suggests that this is not a major influence on this sleep problem14. Some more medically oriented theories have pointed to things such as enlarged adenoids or an "immature" central nervous system as causing sleep terrors, although today there is very little evidence for any specific cause. Sleep terrors do seem to run in families, although, again, it is too early to speculate about any specific genetic cause. The good news is that for most children--including my son--these sleep problems tend to become less frequent as the child grows older and usually are gone by the teenage years.

Sleepwalking and Sleeptalking

It might surprise you to learn that sleepwalking (also called somnambulism), like sleep terrors, occurs during NREM sleep. This means that when people walk in their sleep, they probably are not acting out a dream. Sleeptalking, which usually is not considered a sleep problem, can occur during either REM or NREM sleep. Occasionally, the muscles that control speech escape the paralysis that goes with REM sleep, and people can talk while they are dreaming. (Both my wife and my son talk in their sleep--an indication of the genetic nature of this behavior--and on rare, special occasions, they talk at the same time in what seems like a dialogue!) Sleepwalking typically will occur during the first few hours of sleep when the person is in the deepest stages of sleep (Stages 3 and 4). Because it occurs when people are in this very deep point in sleep, it is difficult to awaken a person at this time--

although, despite the myth, this is not a dangerous thing to do. A second myth about sleepwalking is that the person will never do anything harmful during one of these episodes. People who sleepwalk seem generally aware of their surroundings and tend to avoid harming themselves. There are, however, occasional reports of people hurting themselves or others during sleepwalking, such as the 35-year-old man who was reported to have stabbed another man during an episode of sleepwalking15.

Sleepwalking primarily is a problem for children, although a small percentage continue to sleepwalk as adults. A relatively large number of children, some 15%-30%, have at least one episode of sleepwalking16. Sleepwalking affects less than 1% of adults17, although, when it does occur, it usually is associated with other psychological problems. As with some of the other sleep problems, it is not known how prevalent sleepwalking is among people with special needs; and it is not clearly understood why some people sleepwalk, although factors such as fatigue, being previously sleep deprived, the use of sleep-inducing drugs such as sedatives or hypnotics, and stress have been suggested18. There may also be a role for heredity, given that sleepwalking occurs more often in some families than in others19.

Periodic Limb Movements

You probably have had the experience of being next to a person as he or she was falling asleep and seeing his or her body jerk all over. The significance of this whole-body jerk is not understood, but it appears to be unrelated to any sleep or medical problem. There are people whose legs or arms jerk and twitch throughout the night in a condition known as periodic limb movements. This twitching lasts for only a few seconds and can occur every few minutes or for several hours. By themselves, these limb movements will not harm the person; however, as with interrupted breathing and apnea, limb movements during sleep can interrupt the person's sleep rhythm. For some, they awaken and are therefore bothered by these frequent night wakings. If they do not fully awaken, then excessive daytime sleepiness may result. Sometimes people report being tired during the day, even after 8-10 hours of sleep, and discover the cause to be these sleep-related body movements. One clue to whether a person has periodic limb movements is the state of his or her bed in the morning. If a person's blankets and sheets are disheveled, then he or she may be experiencing excessive limb movement during sleep. Being on certain medications, such as antidepressants, can cause periodic limb movements, as can trying to stop taking other medications such as tranquilizers or sedatives.

A related sleep problem involves an unsettled feeling in a person's legs, sometimes described as a powerful urge to move. Called restless legs syndrome, this feeling in the legs can be most uncomfortable and usually interferes with the ability to fall asleep. Unfortunately, many people with restless legs syndrome also experience periodic limb movements and will feel exhausted during the day. One cause of both of these movement problems may be poor circulation as the result of a lack of exercise. Be warned that an increase of exercise can temporarily increase this problem, although it should resolve itself in a week or two. Too much caffeine also can cause these sleep problems, which is something that easily can be remedied.

Bedwetting

Bedwetting (also called enuresis) is a common problem among children and is surprisingly common among adults as well. Approximately 10% of 5-year-old girls and 15% of 5-year-old boys continue to wet their beds frequently20. Among children with special needs, this number generally is higher. Wetting the bed usually is not considered a problem for children when it occurs during the first 4 years of development. By age 5, however, frequent bedwetting--for example, several times per week--can start to interfere with a child's sense of self-worth and self-esteem and probably should be addressed. Bladder control problems can be part of more significant medical problems for some children with special needs, such as those having spina bifida with myelomeningocele (defects in the spinal column producing a fluid-filled sac that is visible from birth).

Some children may go for weeks, months, or even years without bedwetting, then they relapse. Often, this is a sign of some psychological distress; for example, marital problems between their parents frequently lead to bedwetting in some children as does the addition of a new child to the family. It can also signal the presence of a medical problem such as urinary tract infection, diabetes, epilepsy, or a kidney disorder.

Tooth Grinding

"There it is again!" I told my wife that I had heard a strange noise, and now it was happening again. Being the brave protector, I got out of bed to investigate. Following the noise into my son's room, I found that he was the source. Fast asleep, he was grinding his teeth loud enough to be heard from the other side of the house. More formally referred to as sleep-related bruxism, tooth grinding is a little-understood phenomenon that occurs with some frequency among children and adults. The grinding can be related to dental problems and should be brought to the attention of a dentist if it persists. It also is believed that stress can cause tooth grinding, and stress-reduction techniques sometimes are recommended.

Rhythmic Movement Problems

It is comforting for some children to rock their body or their head back and forth repeatedly just before falling asleep. As with all of the sleep problems, this sleep-related rhythmic movement is not considered a sleep problem unless it is disruptive to sleep or is a source of concern. Children with visual impairments and those with autism and other developmental disorders sometimes may use this as part of their bedtime routine. Unfortunately, this rhythmic movement can become more serious and include injurious forms such as severe head banging. The origins of these rhythmic movements are thought to involve the accidental discovery that rocking can be pleasurable, and, therefore, children incorporate it into bedtime rituals just as you might need to read or watch television before going to sleep each night. Increased stress during the day can cause this rhythmic movement to increase.

Conclusion

We have examined a number of different sleep and sleep-related problems that affect children and adults with special needs. Despite the somewhat lengthy list described here, there are many more--although less common--specific sleep problems. Readers wanting more information about these other sleep problems should refer to the list of additional readings at the end of the book. We next turn to one of the most important sections of the book: how to determine the type of sleep problem that a person has. Before a particular strategy can be recommended for helping a person sleep better, some information must be gathered about the nature of the problem.