Social behavior

The importance of age-appropriate behavior

One of the most important tasks for all parents is to guide their children into developing age-appropriate behavior and this is a process which takes a number of years. All children are difficult to manage at times and studies indicate that some 54% of mothers of young typically developing children find their children difficult to manage at times. [TODO: references 65] Many factors influence children’s behavior including their increasing ability to understand what is expected of them in different situations, their increasing ability to communicate and negotiate social situations, temperament and personality, parent management styles, emotional climates, the demands of some situations, and the reactions of other children and adults to their behavior.

These same factors are likely to effect the development of age-appropriate behavior in children with Down syndrome. However, it should be noted that, when children have limited speech and language, then behaviors may be their only form of communication. When distressed or in difficulty and unable to explain why, children may show difficult behaviors. Typically developing children with persistent difficult or antisocial behaviors will have difficulties in the family, in school, in making friends and in teenage and adult life. The same is true for children with Down syndrome - behavior difficulties will cause family stress and affect the children’s social and educational opportunities. [TODO: references 15]

In our experience, competent social behavior is the single most important factor contributing to well-being in adult life for individuals with Down syndrome. It can be more important than academic progress and is not always linked to cognitive ability. Young people with Down syndrome who have only made a small amount of progress with reading, writing or maths in school, may be independent as adults and able to work successfully, provided that they are socially competent, can behave in socially acceptable ways and can socialise with workmates. Young people with more cognitive ability and academic attainments but poor social skills and social behavior, will not achieve the same success in independence and work when they are adults.

The importance and future significance of the good social behavior of many children with Down syndrome in their school years is often underestimated by parents while the future significance of academic and language delays may be overestimated.

The behavior of children with Down syndrome - research findings

Children with Down syndrome may be expected to progress more slowly in achieving age-appropriate behaviors, as their communication skills and understanding may be progressing more slowly. However, studies of the behavior of children with Down syndrome do not give a consistent picture; some seem to indicate more behavior problems, others do not, depending on the way in which they compare their figures with studies of typically developing children.

Studies that compare children with Down syndrome with typically developing children of similar developmental abilities in communication and understanding (i.e. younger children) indicate that the behavior of children with Down syndrome is not different. For example, the largest detailed study of the behavior of children with Down syndrome was conducted by Cliff Cunningham, Pat Sloper and colleagues in Manchester. [TODO: references 15] reported that 14% had major behavior difficulties. Some 40% of the mothers in both groups had some concerns about their children’s behavior, reflecting the typical demands of parenting.

A different pattern of behaviors

Although the overall incidence of difficult behaviors in children with Down syndrome was similar to children of similar developmental age, the pattern of difficulties was different. More children with Down syndrome were experiencing sleeping and night-waking difficulties and fears, and more were reported to have poor concentration and to be attention seeking. Conversely, eating difficulties were much less common among the children with Down syndrome, fewer were reported to be overactive or restless, and difficulties with sibling relationships were much less frequent.

In addition, some types of behavior were reported frequently for the children with Down syndrome that did not appear on the general questionnaire designed for all children. These included running away, throwing objects, behaving inappropriately with strangers and interfering with other’s belongings. One in five of the children showed these behaviors. A further one in ten children still showed some embarrassing behaviors such as shouting, being aggressive, or taking their clothes off inappropriately or some anxious or obsessional behaviors such as nail-biting, thumb or finger sucking or twiddling objects. These behaviors do not necessarily have the same significance for children or their parents and different types of behavior may have different causes or respond to different management strategies.

Most children and teenagers are not difficult

While the stress caused for parents by difficult behaviors should not be underestimated, studies show that at least two-thirds of all children with Down syndrome do not have significant behavior difficulties even when compared with their same age typically developing peers.

In the studies of the authors and their colleagues, 16-30% of teenagers with Down syndrome were rated as having a significant level of behavior difficulty, depending on the type of behavior being assessed, compared with 5% of typically developing teenagers of the same age. However, 53-62% (depending on the behavior measure) were reported by their parents to have no significant problems, 27-32% were reported to have one to four significant problems and only 11-15% were reported to have five or more significant problems.

Fewer behavior difficulties than peers with learning difficulties

Another important finding from many studies is that children with Down syndrome show fewer behavior problems than children of the same age with similar levels of learning difficulties. [10-14]

While less stress in families with children with Down syndrome has been shown in a number of studies, when families are compared on the basis of the level of behavior difficulties that their children show, rather than the diagnosis given to the child, then the effect of Down syndrome itself disappears. In other words, it is the difficult behavior itself that causes stress, and those families with children with Down syndrome who have persistent behavior difficulties over time are significantly stressed and need additional support, in the same way as families of children with other diagnoses. Many of the behavior difficulties that these families are dealing with could be reduced with the right management strategies but it is not easy to change behaviors that have become habits without professional support to plan a change program as well as emotional and practical support while it is implemented.

Improving with age

The research studies also show that the incidence of behavior difficulties for almost all children with Down syndrome falls steadily with age as the children’s ability to understand and to communicate improves. Some of the children in the Greater Manchester group (91 in all) were assessed again some 5 years later and the results showed a significant reduction in the overall number of difficult behaviors. [TODO: references 37] This improvement with age is illustrated in the sections discussing specific categories of behavior below.

Few adults with Down syndrome have any behavior difficulties. A large study of over 1,000 adults in Chicago USA indicates that some 9% of adults have some behavior difficulties compared with the data suggesting behavior difficulties for a third of teenagers. [TODO: references 70] This information reinforces the view that most are improving and parents need patience and optimism about the future, recognizing that many behaviors are linked to cognitive and language delay, while still encouraging good behavior at all ages.

Significance of chronological age

While the evidence suggests that, as a group, children with Down syndrome may not be at long-term risk for significant levels of behavior difficulties, two issues need further consideration, the extended period for behavior problems due to slower language and cognitive progress and the fact that a minority of children with Down syndrome do continue to show persistent difficult behaviors.

It is encouraging to know that a 7 year old with Down syndrome is only behaving in the way a younger child with the same developmental level would behave and that they will ‘grow out’ of the behaviors. However, the family will have been coping with immature behaviors over a longer time period and the behaviors may have been causing disruption to family life over a longer period. Behaviors that have been practiced over several years may become habits and difficult to change. In addition, the 7 year old may be included in an age-appropriate mainstream classroom for their education and will be included in age-appropriate clubs and activities in the community. The implication of these facts, for the child and for the family, is that age-appropriate general social behavior should be encouraged from infancy, despite delays in speech and language and cognitive development. This is a challenge for the child, but one that, in the author’s experience, most children with Down syndrome can achieve if they are expected to.

Minority with persistent behavior difficulties

A minority of children with Down syndrome, some 11-15%, do have persistent behavior problems through childhood and adolescence and these children appear to fall into two groups.

• One group with more persistent behavior difficulties is from the children with more severe levels of developmental delay. [TODO: references 5] Between 60 - 80% of these most delayed young people had 5 or more significant behavior difficulties. Some 20 - 40% are rather passive and they are very dependent but not difficult.
• The second group with more severe and persistent behavior difficulties are children who are within the average ability range for children with Down syndrome. These children may have more difficult temperaments and tend to be constantly challenging. They may be in family environments where there are emotional or social difficulties and family stresses are affecting children’s behavior.

These two groups of children need skilled behavior management and parents of children with Down syndrome should have access to advice and support for behavior management from infancy to help them to avoid long-term difficulties and the associated family stress that has already been discussed.

Additional difficulties - anxiety, autism, ADHD, OCD

Some children with Down syndrome will have characteristics beyond the typical range of temperamental and personality characteristics seen in most children, such as significant anxiety, hyperactivity or obsessional behavior. High levels of anxiety will influence children’s social behavior and anxious children may wish to cling to routines and rituals to give themselves a sense of predictability in their lives, thereby reducing their anxiety levels. Anxious children will not be easy to manage and may have difficulty in relating to other adults and children. Hyperactive and impulsive behavior can be linked to slow development, as can obsessional behaviors, making it difficult to determine whether these behaviors are actually clinically significant and deserve treatment, or are just part of developmental delay and will improve as development progresses.

There is no evidence to suggest that children with Down syndrome are protected from other disorders of childhood and therefore it can be expected that some children will have autistic spectrum disorders (ASD), obsessional compulsive disorders (OCD), or attention deficit hyperactivity disorder (ADHD). Any of these disorders will influence their social development and make them more difficult to manage, at home and at school.

Unfortunately, it is not always easy to separate out the effects of very slow language and cognitive development on social development from the effects of autistic, OCD or ADHD difficulties and this has recently been recognized by clinicians. [TODO: references 73] When a child is making slow progress in play and in communication, they often develops behaviors such as lining up toys, twiddling with and fixating on objects, aimless over-activity and impulsivity, or withdrawal into their own world; symptoms also seen in ASD, OCD or ADHD. However, these behaviors on their own are not diagnostic of autism or ADHD but simply reflect the child’s current level of cognitive and communicative ability. These behaviors are also seen in children with brain damage, and in the 11% most delayed group of children with Down syndrome, many of whom are known to have additional brain damage due to illness, trauma or unknown causes.

In a study [TODO: references 71] of obsessional compulsive behaviors in which the behaviors of children with Down syndrome were compared with the behaviors of typically developing children matched for mental age, the incidence and types of behaviors seen were the same in the two groups. This suggests that there was no abnormal increase in the children with Down syndrome in relation to their developmental levels. Ritualistic and obsessional type behaviors are seen in all children and reduce with age. However, the children with Down syndrome engaged in the behaviors more often than the comparison children, but both the number and frequency of the behaviors did fall in the older children.

In our view, ASD in particular is over diagnosed and the true incidence is probably about 3-5% or even less, rather than the 10% suggested by some observers. [TODO: references 72]

Two groups of children with Down syndrome may be at particular risk of being wrongly labelled as also autistic; those with shy temperaments who withdraw when unable to communicate and those with more significant communication and/or cognitive delays. The shy children can be very sensitive to the insensitive reactions of others and need to be supported in environments where they feel a warm emotional climate and where all their attempts to communicate are responded to. Disturbed and ‘autistic’ like behavior can be seen even in older children when they are in hostile environments such as an unhappy, rejecting classroom environment. Their disturbed and ‘autistic’ behaviors disappear when the emotional climate changes. The second group of children, the 11% of children with Down syndrome with more severely delayed communication and cognitive skills, often associated with additional health and sensory problems, need focused help to develop effective communication using signs, symbols or speech and they need support to learn to play and to move forward in their cognitive development.

The main message here is that correct diagnoses may lead to important positive help but incorrect diagnoses may lead to misinterpretation of children’s difficulties, produce additional difficulties and deny children appropriate help, resulting in their development stagnating or regressing.

Role of sleep disturbances

In a series of studies of sleep disturbance in children with Down syndrome in Hampshire, UK, Rebecca Stores and colleagues have reported a high incidence of sleep difficulties and they have drawn attention to the link between sleep disturbance and the occurrence of daytime behavior difficulties. [TODO: references 14] This is an area which warrants further research as it affects about half of all children with Down syndrome and sleep disturbance is very stressful for the whole family.

Different types of difficult behaviors

Most studies of behavior difficulties simply count the number of difficult behaviors, regardless of the type of behaviors the children are showing. Some studies take account of the severity and frequency of the behavior difficulties, but not all report their data in ways that allow comparisons or give sufficient detail to be of practical use to parents, teachers and other carers.

In our experience, not all behaviors have similar significance in terms of their effects on the lives of children and their families, teachers or carers. This is illustrated by the ratings of seriousness given to different types of behavior difficulties by parents in one research study (see box). [TODO: references 66] The causes of all behaviors are not understood and not all require the same responses. There is no ideal way to classify them, and all classifications are arbitrary to a degree, but in order to discuss the behaviors which may be seen, they are described in 6 main groups, based on our attempts to group them into significantly different types of behaviors in terms of their daily impact in peoples lives, the times they occur and the effects they may be having for the child and others:

• difficulties with self-help and independence skills
• sleeping disorders and difficulties
• temperamental difficulties
• habits, rituals and anxious behaviors
• management and conduct difficulties
• antisocial behaviors

In the next section each of these groups of behaviors is discussed. The incidence of behaviors in each group is included for guidance, based on the two largest studies of children and teenagers with Down syndrome available, from Manchester and Hampshire in the UK. These figures will allow parents and practitioners to identify how common particular behaviors are, and the studies illustrate that most difficult behaviors do improve with age for most children. However, they need to be interpreted with caution, as they are simply the percentage of children who have showed these behaviors in the past month, and therefore the behaviors may not be a significant problem for many of the children. The detailed sleep data in [Table 5] is from a separate study of sleep difficulties. [TODO: references 74]

Understanding and managing difficult behaviors

The authors have divided the behaviors into 6 groups on the basis of the types of behaviors reported in research studies and on the basis of their experience of working with children with Down syndrome and their families over many years. Different types of behavior cause different types of difficulties for families and some behaviors are more disruptive of family and social life than others.

It should be stressed that many children with Down syndrome, at least 75%, do not show more behavior difficulties than other children of a similar developmental level and many children with Down syndrome, at least 50%, are not considered difficult to manage by their parents at any age. However, when children with Down syndrome do have behavior difficulties, this can be very stressful for family life and it can lead to being excluded from inclusive education and community activities.

It is, therefore, very important to describe what is known about the difficulties that may occur, how to prevent them from arising, and how to reduce difficulties as quickly as possible when they do occur. In each section, figures indicating the incidence of individual behaviors are included where they are available. The Manchester study provides figures based on information collected for 91 children at two points some 5 years apart, in 1986 and in 1991, when they were 7-14 (mean age 9 years 2 months) and then 11-17 years old (mean age 13 years 9 months). [TODO: references 37] In both studies the information was provided by parents through questionnaires and interviews.

Difficulties with self-help and independence skills

While most children with Down syndrome steadily improve in all their independence skills and achieve a high degree of independence in personal care by their late teenage years, a small number of children continue to be more dependent or to show difficult behaviors around the daily routines of eating, toileting, washing or dressing, or going to bed and sleeping.

Difficult behaviors during eating or bedtime and sleeping routines are common in all small children. These are the times when they can begin to exert their own wishes and challenge their parents. This issue has been discussed in the earlier section on self-help skills. However, when behavior difficulties are related to eating, dressing or sleeping, they may occur on a daily basis and even several times a day, causing considerable stress for parents and disruption to family life, as shown by the [parent ratings in the box].

Practical advice on how to avoid or to deal with difficult behaviors is provided in more detail in each of the age-specific practical modules on social development.

Eating

Table 2. Percentage of children with eating difficulties

Behavior difficulties such as being a particularly faddy eater, or refusing to sit at the table through meals can add a great amount of stress to daily life. The figures in [Table 2] indicate that half of the 7-14 year olds and a quarter of teenagers are still faddy eaters. It is important to encourage children to try a range of tastes and textures from the first moves to solid food. Some children are quite resistant to chewing and to trying new tastes but it is important not to allow children to always demand the foods that they like.

Sixteen percent of the younger group still have the poor appetite which worries parents of many younger children, but most have grown out of this by their teenage years. There is no information on the general behavior of children with Down syndrome at mealtimes, such as refusing to eat at the table with the rest of the family or being difficult in a restaurant. However, parents of teenagers report that every young person (100%) can be taken to eat in a café or restaurant. [TODO: references 38]

Toileting

Table 3. Percentage of children with toileting difficulties

Incontinence beyond the years of infancy is another daily demand which will add to family stress and which will influence a child’s acceptance in community activities. Parents in the Manchester study rated it as a significant issue (see [parents’ rating box]). The figures in [Table 3] indicate that almost all teenagers and young adults are fully continent day and night. However, for the 7-11 year olds, one child in five is still having soiling accidents, two in five are having some night time accidents and about one child in four is still having some daytime accidents. The age at which daytime continence is achieved may be influenced by clear consistent toilet training routines.

For some of these children there may be physical reasons for their delayed continence. For some they may only be having occasional accidents when anxious or upset. For others, there may be a behavioral element with accidents being rewarded by attention.

Sleeping

Table 4. Percentage of children with sleep difficulties

Disturbed nights on a regular basis can be debilitating for all members of the family - especially for parents, who rated sleep disturbance as significant in the Manchester survey (see [parents’ rating box]). The figures in [Table 4] indicate how common night time problems are among children with Down syndrome. For the 7-11 year olds, four children in ten have difficulties in settling at night, and half of the children still wake at night. By late teenage years the figures illustrate considerable improvement but one or two teenagers in every ten still have settling or night waking difficulties.

Bedtime and sleeping difficulties probably have two main causes, physical - breathing difficulties and restless sleep - or behavioral. There is good evidence that the incidence of behavior difficulties during the day is increased in children who do not sleep well. In addition, if children are not getting quality sleep at night it may well affect their development and ability to learn. For this reason the next section is devoted to exploring the information available on sleep disturbance in more detail.

Sleeping disorders and difficulties

Table 5. Percentages of children with sleep difficulties - Hampshire study [TODO: references 74]

In the Hampshire studies [TODO: references 5] 91 children with Down syndrome were studied, 51 boys and 40 girls, in four age groups, twenty 4-7 year olds, thirty-one 8-11 year olds, sixteen 12-15 year olds and fourteen 16-19 year olds. Their patterns of sleep and sleep routines were compared with three other groups of children of the same age range;

• their similar age siblings
• typically developing children from families without a child with a disability, and
• children with similar levels of learning disability but not Down syndrome.

The general trends indicated significantly more sleep problems in the two groups of children with disabilities compared with the typically developing groups. There were no significant differences in the sleep patterns of the siblings of children with Down syndrome and the children from families without a child with a disability, indicating that the families of children with Down syndrome had no more difficulties with their other children than other families.

There was a tendency for the other children with learning disabilities to show more difficulties around going to bed, sleeping alone, early waking and night waking but less breathing related sleep disturbances than the children with Down syndrome .

The figures in [Table 5] show the comparison between the sleep difficulties of the children with Down syndrome and the typically developing age matched comparison group.

The figures illustrate that the sleep disturbances of children with Down syndrome fall into two main categories, which the researchers describe as ‘behavioral’ and ‘physical’ problems. They see behavioral problems such as reluctance to go to bed, night waking and sleeping in parent’s bed as largely problems of management and therefore treatable with behavior management strategies. Physical sleep disturbance is thought to be related to breathing problems linked to the smaller size of upper airway, possible obstruction by tonsils and adenoids, or sleep apnoea of central (brain control) origin.

In a further study by the same group, 3 specific types of sleep disturbance were identified;

• sleep onset difficulties (going to bed and settling problems)
• sleep maintenance difficulties (night waking problems) and
• breathing related sleep disturbance.

Some children only had one pattern of disturbance, and some had no sleep problems, and this allowed the researchers to explore the links with each type and daytime behavior problems. All the sleep disturbed groups had significantly higher ratings for daytime behavior difficulties and their mothers had higher stress ratings. However, the group with sleep maintenance problems had significantly worse daytime behavior ratings and their mothers had higher stress ratings than the other two sleep disturbed groups. Night waking, then, seems to have the most serious consequences for the child and the family. Night waking when not linked to breathing difficulties should be seen as a behavioral difficulty and discouraged.

Many children will have two or even all three types of sleep disturbance. Health checks with a specialist should be carried out for the breathing disturbed children and behavioral management strategies put in place for the children showing going to bed, settling and night waking difficulties. In our experience, sleep difficulties can become long term problems that are difficult to change in many families. Therefore it is very important to alert families of young children to this risk in order to prevent problems and to offer help to families with persistent difficulties to change the patterns. Research indicates that behavioral approaches are effective, if parents receive expert help. [TODO: references 78]

It is also important that teachers, doctors and parents are alert to the high levels of sleep disturbance among children with Down syndrome, particularly in the primary school years, especially as these children may be the ones with the daytime behavior difficulties. Lack of sleep makes anyone irritable and lowers tolerance levels, so that sleep difficulties should always be investigated before just assuming that a behavior management program needs to be implemented for the particular daytime behaviors.

Temperamental difficulties

BBehavior difficulties may reflect the underlying temperament of the child, and on measures of overactive or impulsive behavior and measures of attention and concentration difficulties some children with Down syndrome score in the abnormal range. For these children, their temperament may make them more difficult to manage throughout childhood. It is, however, important to note that children may display overactive behaviors or have attention difficulties for many other reasons than their underlying constitution. In particular, they can be linked to cognitive immaturity. They could also be linked to difficulties in the child’s environment or to changes in health, in which case, the behaviors are likely to represent a change in the child’s typical behavior.

Table 6. Percentage of children with overactive behaviors

Overactivity and attention span difficulties will both affect children’s ability to learn in school and their ability to fit in to social activities in the community. For these reasons, and because developmental delay may be a significant factor, advice is given in the initial section on ways to help children increase their attention and concentration abilities.

Overactive, impulsive

The figures in [Table 6] indicate that while some 40% of 7-14 year olds are reported as sometimes or often overactive, half of these children will not be rated as overactive in their late teens. Some 10% of teenagers are described as restless, or having difficulty in waiting in line or playing quietly. About one teenager in five is described as having a tendency to fidget with hands or feet or to squirm when sitting on chairs. On the other hand, about one third of teenagers are described as inactive, with a tendency to sit about and not initiate activities.

Limited attention and concentration

Table 7. Percentage of children with attention difficulties

The figures in [Table 7] illustrate that about half of all teenagers are considered by their parents to have poor concentration and one in three have short attention spans. There is a problem in assessing attention spans and separating out attention from motivation. Some 38% of teenagers are described as only attending when really interested in the activity. Two further questions indicate that some 10-15% of teenagers are considered distractible when engaged in a task.

The extent to which the attention and hyperactivity tendencies reported for children with Down syndrome constitute a real problem of the level to be diagnosed as ADHD is difficult to determine. In the Chicago study described in the next section, only 3% of adults are diagnosed as having ADHD.

Habits, rituals and anxious behaviors

Table 8. Percentage of children with habits, rituals and anxious behaviors

Another group of behaviors is illustrated in [Table 8]. These behaviors may cause concern to parents but they are not usually directed at others. They are rated as of low significance by parents in the Manchester studies (see [parents’ rating box]). The frequency of these behaviors may vary and increase when children are upset or anxious. The Manchester studies have shown that this group of behaviors have a higher frequency in children with more severe developmental delays. The figures illustrate that about one third of the children suck their thumbs or fingers, or bite their nails or make noises. Mouth and throat noises are common habits among children with Down syndrome and may cause some embarrassment to their families. Fewer teenagers show these behaviors but a third still grind their teeth.

One child in four is reported to twiddle with objects and a similar number sometimes exhibit tics or nervous movements. These behaviors may also get worse when children are tired or anxious and sometimes are accompanied by self-talk. The talk is often about something that the child is worrying about. These behaviors, particularly the tendency to twiddle with objects, may be a form of self-stimulating activity, particularly in children with limited play skills.

Ritual or obsessional behaviors are quite common among children with Down syndrome. The studies report such behaviors in one child in ten, and a study suggesting that they are no more common than in mental age matched typically developing children has already been discussed (see [Additional difficulties section]). Ritual behaviors may include bedtime rituals, when tasks must always be gone through in the same order, or door closing, when children seem to have difficulty tolerating an open door. They may also include play that seems to have an obsessional quality, such as always lining up toys or repeating activities rather than engaging in imaginative or new play. The authors have observed a tendency towards obsessional play and obsessional behaviors in daily routines in quite a number of children that they have worked with. The tendency to cling to such routines often gets worse when a child is anxious or stressed.

A large study of the well-being of adults in Chicago in the USA has reported on the tendency for adults with Down syndrome to develop routines and to be well organised in their daily lives because they develop appropriate routines for daily tasks and work tasks. [TODO: references 79] This has been described as ‘groove’ potential - a tendency to get into a groove and to be well organised as a result. However, under stress the person may cling to the routine in an obsessional way and find it very difficult to cope with change. In the Chicago study, 18% of adults were felt to have obsessional behaviors and this is a much higher incidence than would be found in the general population. Anxiety was also common and reported in half of the adult group. About a third were affected by mild mood swings or depressed mood and this was frequently linked to stress and loss of control over life situations.

The figures in Table 8 indicate that 65% of children with Down syndrome did not cope easily with change. Finding change difficult may be linked to delays in language and cognitive development. A child with limited language abilities may find it difficult to cope with change as they may not understand what is happening or what is expected of them in a new situation unless someone takes time to explain the changes to them. Familiar routines allow the child to predict what is going to happen and to feel safe.

About half the teenagers with Down syndrome are reported to have some significant fears. The most common fears are fears of thunder storms and fears of loud noises. In some younger children parents report that fears of loud noises mean that their children become distressed even at birthday parties and cannot be taken to the cinema or the pantomime.

Management and conduct difficulties

Management difficulties are often the group of behaviors that cause the most stress for parents. All children wish to take charge of their own lives and to push against control and authority. In typical development, babies can be seen to begin to exert control over their parents from as early as 12 or 13 months of age, as they scream to be picked up when put to bed for example. The term ‘terrible two’s’ recognizes that at about 2 to 4 years many young children can be difficult, resorting to temper tantrums when they cannot do what they want, running off or refusing to stay in the car seat without being able to anticipate the dangers involved. The Manchester studies suggest that this period is delayed and occurs at about 3 to 4 years in children with Down syndrome. The figures in [Table 9] indicate that management difficulties are quite common but the reader is reminded that the overall level of management difficulties was not different from that of children of similar cognitive and language levels.

Table 9. Percentage of children with conduct difficulties

However, there are behaviors in this list, such as running away, which can be a considerable cause of stress over a number of years if not dealt with firmly at the outset. Therefore, it is very important to encourage parents to have clear boundaries and guidelines for behavior. It may be more important to expect and encourage good behavior in toddlers with Down syndrome from the second year of life, as it is going to be longer before they can be reasoned with or self-regulate their own behavior.

The ability to control or self-regulate behavior has been shown to be linked to expressive language ability in typically developing children and in young people with Down syndrome, as we all use self-instruction (usually private or silent speech) to organise our behavior.

Initially, conduct disorders may begin as children wish to explore and learn and because they wish to do what they want rather than what others want. In other words, they start as part of normal development and the push for independence. However, they frequently become behaviors that gain attention or a particular reaction, like being chased when running. The child then repeats the behaviors to obtain the reaction from the adult and a cycle of reinforcement of the behavior is set up.

It is helpful to think of most conduct difficulties in this way, that is, that they are behaviors that are being carried out because the child is rewarded by the reaction they provokes. This means that to stop the behavior, the adults with the child must change their reactions to the behavior. For example, a temper tantrum should be ignored if possible. A tantrum occurring at home is easier to deal with than one in a shop, however, the principle is the same - the behavior must not be rewarded.

In our view, it is helpful to think about prevention of the behavior in order to create positive change, so that, in the temper tantrum example, distraction when the temper is on the way might work, without actually allowing the child to get whatever they was about to demand. In the case of running, prevention is definitely the best strategy and a wrist strap or harness should be used to teach children to walk beside parents as they begin to grow out of pushchairs. In a supermarket, running may be sometimes ignored rather than chasing the child, but obviously running cannot be ignored in the street. If parents anticipate the tendency for toddlers and young children to run, they can be vigilant in encouraging walking close to an adult and try to prevent running from ever happening.

Prevention and management strategies are discussed more fully in each of the age-specific practical modules on social development and behavior, and a detailed discussion of how to evaluate a difficult behavior, prepare a management strategy and carry it through successfully, with full examples, is contained in the module on changing behavior.

Antisocial behaviors

Table 10. Percentage of children with aggressive or antisocial behavior

Antisocial and aggressive behaviors are a cause of considerable concern to parents, and many children show antisocial behaviors at times. Antisocial behaviors cause considerable embarrassment and can lead to difficulties in attending mother and toddler groups, or play groups. Behaviors in this group are most often directed at other children rather than adults.

Antisocial or aggressive behaviors are usually maintained by the reactions they get, even if they started as exploratory behaviors, so the effective way to deal with them is by prevention - intervening before they happen - and by changing the way adults react to the child.

The co-operation of other children will also help when the behavior is taking place in a school setting. For example, children need to know that they must not laugh at a behavior which may seem silly but is unacceptable. Children may also need to be given permission to move away from a child who might pull their hair or to put their hands out in order to stop the child. Our research group have some data which illustrates that children in inclusive settings may be ‘too kind and understanding’ about the behaviors of children with obvious disabilities. Children of junior school age (8-11 years) were much more tolerant of difficult behavior when the child had Down syndrome than when the child had no disability. [TODO: references 51] While this seems positive and highlights the social acceptance of the children with Down syndrome, who were chosen as friends and playmates about as often as the average typically developing child, in fact it means that the child with Down syndrome is not learning that their behavior is unacceptable to peers.

In all settings the friends, classmates, and all adults who are with children with Down syndrome need to expect and encourage socially acceptable behavior and to make sure that they are not inadvertently rewarding unacceptable behaviors or treating the child as if they were younger, so making allowances for the behaviors that are not in the child’s interest in the short or the long term.

Overview of behavior issues

The behavior of most children with Down syndrome is typical of children of similar developmental level and more than half of the children never present with particularly difficult behaviors. However, behavior that may be developmentally appropriate will be occurring in an older child and may last for longer, perhaps causing stress for families and making inclusion in school and community more difficult.

It is, therefore, important to encourage age-appropriate behavior in order for the child to succeed, especially when included in age-appropriate classes and activities. It is also important to encourage age-appropriate behavior as this respects the age of the child, increases their self-esteem and control over their lives. Children with Down syndrome usually have good social understanding and are good at learning by imitation, therefore they can achieve age-appropriate social behavior despite their delays in language and cognitive development.

Parents need advice on prevention and management of behavioral difficulties. All children like to exert their own control over their lives, but they need to learn to control impulses and to conform. Many potential difficulties can be prevented by establishing clear routines and firm guidelines, especially if parents of babies are advised of the importance of good management. Good eating and sleeping routines can be established from infancy - before 12 months of age. Routines give the baby a sense of security, as life is predictable, and enable parents to establish clear control before the baby tries to exert his/her control. When babies do begin to try to exert control, it is often around feeding and sleeping that difficulties occur. The data reviewed in this module highlight the risks of long-term sleep difficulties and their negative effects, so good sleeping routines from infancy are really important.

Prevention of sleeping difficulties requires parents to be firm about not responding to the child’s demands. A difficult behavior is usually being maintained by the reward the child obtains (for example being allowed to stay up late, or attention if waking in the night). Therefore, changing a difficult behavior means changing the adult reaction to the behavior. Virtually all management and antisocial behaviors can be effectively changed by changing the adult reaction to the child. In the practical modules on social development, examples are provided to illustrate how the common difficult behaviors can be stopped - at home or in the classroom.

However, before identifying a behavior as a problem, it is important to remember that behaviors may be a form of communication indicating distress. Therefore it is important to make sure that the child is not reacting to difficulties in his/her environment. If school work is too difficult, if the child does not understand the requirements of a situation, or if a child senses negative emotions, then the way to change the behavior is to correct the underlying causes. In these situations, the behavior is not attention seeking in nature.

Most children with Down syndrome can be expected to have good social behavior if those around them at home and at school create the right environment and expectations, but it is important to remember that a minority of children have more specialised needs and they and their families will need more advice and support.