social-overview

Introduction

Social development, as discussed in this module, includes the development of interpersonal social skills, friendships, play and leisure skills, independence and self-help skills, and socially acceptable behaviour. It can be argued that social development is fundamentally important to any individual’s well-being since the ability to socialise, to make friends and to take care of one’s self, affects all aspects of daily life. In fact, social confidence and competence may be more important than academic skills for becoming independent, finding work, having friends and being independent in the community as an adult.

Most aspects of social development involve social interaction or social activity with other people and, therefore, the ability to understand the behaviour, emotions and feelings of others is important for success in social relationships. The ability to communicate effectively with others is equally important in developing social relationships and managing daily life.

For children and adults with Down syndrome, social understanding is usually a strength, beginning in infancy. Many of the cues which indicate how someone is feeling are non-verbal, for example, tone of voice, facial expression and body posture, so that even when a child or adult does not understand all the spoken language being used in a social situation they are still able to pick up the main messages about feelings and behave in an appropriate way, despite the delays in their development of spoken language skills. This has led a number of authors to emphasise the good social skills, empathy and social competence of most children and adults with Down syndrome. [1-9] and this can help them to be successful in community activities and in inclusive education. However, in our experience, good social understanding of the behaviour of others can also enable children with Down syndrome to be skilled at being naughty as they know exactly how to provoke the reactions they want! We will return to this issue in the section on behaviour below.

It is important to stress that children with Down syndrome are all individuals and differ widely in their social skills, communication abilities and understanding. In addition, like all children, the social development of infants and children with Down syndrome will be influenced by their temperament, experiences in the family, school and community and by the way they are treated by others. [TODO: references 4] The behaviour of a child is almost always very different in an environment where they feel safe and understands what is expected of them compared with the same child’s behaviour when sensing negative emotions or when unable to explain a difficulty.

See also:

A small number of children with Down syndrome also have other conditions such as neurodevelopmental disorders, including autistic spectrum disorders, and these children will have social difficulties and will not show the good social understanding that is typical of most children with Down syndrome.

Influences on social development

Influences on social development

Social development begins from the earliest days of babies’ lives and is strongly influenced by their experiences with their parents and caregivers. Parents and care givers, in turn, are influenced by the temperament and behaviour of infants from the earliest days. Some babies are more difficult than others and some parents will be able to cope with difficult babies with more confidence than others. In other words, development is a dynamic and interactive process in which the behaviours of children and parents influence each other, and the children’s ongoing experiences influence their development in addition to their biological makeup. In this section, four main influences on social development are highlighted briefly - temperament and personality, language and cognitive abilities, family environments, and expectations and management. The evidence of their influence on outcomes for children with Down syndrome will be returned to later in each section when discussing the different aspects of social development.

Temperament and personality

Children’s behaviour and social development is influenced by temperament and personality. Some children are anxious in temperament, others placid and calm. Some children are outgoing and sociable, others are shy and find it less easy to make friends. Research studies indicate that the range of temperamental and personality characteristics among children with Down syndrome is the same as the range observed in typically developing children. There is little evidence to support the stereotype which suggests that all children with Down syndrome are invariably placid and happy. [TODO: references 3]

Temperament is used to describe the basic behavioural style of children. [TODO: references 23]

These figures illustrate that the range of temperaments seen in the infants with Down syndrome was the same as the range seen in the typically developing children. The figures also illustrate the range of individual differences in the temperaments of the infants with Down syndrome, making clear that the stereotypes which suggest that all the children are the same are not supported by the evidence. This information also indicates that, like typically developing children, some children with Down syndrome will be more difficult to manage than others and that some will have more social difficulties than others, as a result of temperamental differences.

Some children and teenagers with Down syndrome, like other children, will have additional difficulties such as autism spectrum disorders (ASD), attention deficit hyperactivity disorders (ADHD), obsessional compulsive disorders (OCD), anxiety or depression, which should be diagnosed and treated appropriately. Any of these additional difficulties will affect their social functioning.

Language and cognitive abilities

Children’s social development is influenced by their understanding of the world around them and the behaviour of others, therefore children with delayed cognitive (mental) development are likely to have more difficulty in becoming socially competent and in controlling or self-regulating their behaviour. They will be older before they understand the reason why certain behaviours may be dangerous for example.

Children’s rate of progress with language development will also influence all aspects of their social development. As children’s understanding of language develops, it is possible to reason with them and explain why certain behaviours are desirable and others are not (though this can also be effectively communicated in non-verbal ways, with actions and gestures, in most situations). As their language and communication skills develop, children experience less frustration and can explain how they feel or ask for what they want. In addition, in typical development, language is also important in self-regulation as children use silent or private speech to control their own behaviour and this also seems to be true for children and teenagers with Down syndrome. [TODO: references 28]

It is likely, therefore, that those children with Down syndrome who progress more slowly than most in language and cognitive development will be more at risk for behaviour and social difficulties and will be more demanding to manage for longer periods of time during childhood. For almost all children with Down syndrome, their social competence and behaviour steadily improves with increasing age. [TODO: references 4]

Family environments

All children are influenced by their experiences within their families and the relationships within families, the personalities and the interpersonal communication within families vary a great deal. Children need to feel loved, wanted and emotionally secure as well as having their basic needs for warmth, food and care met. Some families experience more difficulties than others in establishing a supportive emotional climate as well as good communication between members of the family. In these families, the task of bringing up children will be more difficult than in cohesive and emotionally stable families and children in these families are likely to have more social and behavioural difficulties and to do less well in school.

Some families have many more social disadvantages than others, such as unemployment, one parent coping alone, poor housing, or poverty. Parents who are disadvantaged in any of these ways will find parenting more difficult and their children will tend to be more at risk for developmental difficulties.

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The research indicates that these family differences have the same effects on the progress of children with Down syndrome as they do for other children. [15-18]

Expectations and management

See also:

Bringing up children is a difficult task and the progress of all children is influenced by the expectations in the family and by parents’ management skills. All children respond to the social feedback that they receive about themselves, their behaviour and the way in which they are expected to behave. Parents have different expectations for the behaviour of a two year old compared with their expectations for the behaviour of a five year old. Parents vary in their requirements for good behaviour and in their ability to manage difficult behaviour. These variations in behaviour expectations and management skills influence the social development of children in all families.

When a child has a disability, it is often much more difficult for parents to know what expectations and demands for good behaviour are appropriate. Do they judge these on the basis of the child’s developmental skills or on the child’s chronological age? It is easy to ‘baby’ a child with a disability - that is, to treat them as if they are younger than they are - and the child may then behave in immature ways for longer than is necessary.

The delays in cognitive and language development experienced by most children with Down syndrome may make them more difficult to manage in some ways. Routines and quite clear behaviour expectations help the child to understand the rules more easily. [TODO: references 16] In other words, there may be less room for more flexible attitudes to behaviour and parents may benefit from support and guidelines on the need for good behaviour management from the first year of the child’s life.

Teachers and other carers also need to be encouraged to expect and reward good behaviour. In preschool and school, children with Down syndrome should be expected to behave in socially age-appropriate ways and to conform to the school routines. In our experience over many years, behaviour difficulties arising in school or in community settings are most often the result of inappropriate management.

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However, children with Down syndrome can be quite challenging, often in naughty ways, as they often see how far they can push the boundaries in a new situation. Some of these behaviours may be learning and exploratory behaviours. Children with Down syndrome often use their good understanding of the behaviour of others to get the reactions that they want, for example running away, which usually results in being chased, and a variety of other behaviours such as touching other children’s work or making a noise in class to gain the teacher’s attention.

For some children, behaviour is not easy to change and if a child is persistently difficult in school and at home, parents and teachers will have to work together to develop common strategies in order to change the behaviour.

  1. Social understanding, friendships and relationships

Infancy and preschool years

Social communication begins early

The first steps in social development are seen within the first few weeks of life, as babies begin to make eye-contact and to smile when they are picked up and talked to. They are beginning to learn about the significance of facial expression, tone of voice and body movement and how these indicate how someone feels. Babies with Down syndrome show very little delay in responding to their care givers. [TODO: references 30]

Some studies suggest that infants with Down syndrome continue to be very interested in face-to-face social games with a partner for longer than is typical. [TODO: references 2] This may be partly the result of delay in the development of motor skills and partly due to delay in the development of attention skills, as explained below.

Delayed ability to explore

By eight months of age most typically developing babies are developing their gross and fine motor skills. They are moving around the floor by rolling or crawling and they are increasingly able to play with toys and explore their physical environment. The motor skill development of the baby with Down syndrome is usually progressing more slowly. They are later to develop the fine motor skills which will enable them to manipulate toys and the gross motor skills which will enable them to get into cupboards, climb on to chairs and explore their physical world. Their main entertainment at 8-12 months will still be interaction and play with their care givers.

Developing shared attention

Promoting social development in pre-school years

At about twelve months of age, typically developing babies are able to follow the line of gaze of another person or the direction of a pointing gesture, so that they can look at an object or activity while also attending to what their partner is saying about that object or activity. This ability is called joint reference - shared attention to an object or activity between two partners. This is important for language learning, as it provides the baby with the opportunity to learn the meaning of words, as the adult will name the object or talk about what is happening as they both look at the same object or event. Babies with Down syndrome take longer to reach this milestone. [TODO: references 2]

In order to increase episodes of joint attention, and in particular to encourage babies and toddlers with Down syndrome to initiate joint attention episodes, it is important to follow their lead. That is, to point to and to comment on an object or activity that the child is already looking at or engaged in. This will help the child to cope with the attentional demands of the situation and increase the likelihood that the child will be able to link the adult’s comments with their experience. Opportunities to engage children in joint attention episodes occur throughout the day, when engaged together in activities such as washing, eating, shopping or walking and when children are playing.

Increasing attention spans and shared activities

It is also important to encourage infants to enjoy shared activities such as looking at books and playing games together. This will help them to increase their attention span, to learn to listen, to engage with another person and to follow instructions. This will lead to competence in learning situations and in preparing children for sitting, listening and taking turns with others in a playgroup or class situation. Some children with Down syndrome have short attention spans, are distractible, and find sitting still for more than a few minutes difficult. [TODO: references 5] It is, therefore, important to develop attention skills and learning skills throughout the infant and preschool years.

Attention to a task is influenced by how interesting it is for the child, therefore sometimes attention and motivation become confused. A child may be described as distractible and having a poor attention span when a learning task is in front of them but the same child will concentrate happily when listening to a favourite story or when watching a video. The message here is that all learning needs to be fun and many learning situations can be more fun if teacher and child take turns at the task, so that success is modelled, or learning takes place in a group game with other children. To start to increase a child’s attention, choose a task the child enjoys and increase the time spent on it in small steps. With a task the child is not so keen to participate in, think of ways to make it fun and reward small increases in time spent on a task by allowing the child to choose another favoured activity.

The role of language

The social development of children with Down syndrome will be influenced by the delay that they usually experience in learning to talk. In the second year of life, typically developing babies begin to develop spoken language skills, with many children having at least a 50 word vocabulary by 18 months, and to be talking in two or three word utterances by two years of age. Clearly, the ability to use words to communicate greatly increases a child’s ability to manage social situations, to ask for what they want and to explain how they feel. Children’s rapidly growing understanding of language allows parents to explain actions and to reason with them. Although spoken language development is delayed for children with Down syndrome, they usually understand more than they can express. [39-41]

Longitudinal (follow-up) research suggests that the capacity to initiate and respond to social games in the early years is related to progress in expressive language and it is related to the social competence of children with Down syndrome at 10-13 years of age. [TODO: references 1] Parents and teachers should be aware, therefore, of both the potentially positive and negative effects of the social interactiveness of children with Down syndrome. Social interaction initiated by the children should be encouraged and responded to in most situations, but in a teaching situation children should be encouraged to attend to the task in hand and parents and teachers should not reward social diversions.

Learning by watching and imitating

Children with Down syndrome continue to show good understanding of the non-verbal cues in social situations and they also show good ability to learn how to behave in social situations that are repeated, where they can model what is expected by copying other children. For example, many children with Down syndrome are good at learning the routines for arriving at preschool, hanging coats on pegs, lining up, sitting at tables, and sitting on the mat for story-time because these actions are repeated every day and they can imitate the other children. Learning by imitation is a strength and one which children with Down syndrome use to learn effectively from other children in many situations.

A great deal of social behaviour can be learned by watching the behaviour of others over time, in real life and from television ‘soaps’. This can extend beyond classroom social behaviour to include practically useful behaviours in a range of social situations such as clubs, shops, cafeterias, buses and church. It can also include learning about behaviours in different relationships, such as boyfriend/girlfriend behaviours and more adult social behaviours. This may explain why the social behaviour of many teenagers and young adults with Down syndrome is often age-appropriate and competent, despite their language and cognitive delays. They learn by watching, imitating and then ‘doing’ - and their understanding increases by participation, practice and feedback rather than by explanation.

Playing with age mates

Children’s relationships with others of their own age play an important part in development. Many small children find the early stages of playing with other children difficult. They do not want to share their toys with others or to take turns in an activity, but they learn to do so and move towards co-operative play with others. There has been very little research into the way in which children with Down syndrome develop relationships and co-operation with their age-mates. Their delayed spoken language skills will affect their ability to play with other children and in preschool they will mainly play alongside rather than with others. However, they will be learning about play and social behaviour from watching and from listening to the language of the other children, especially as children with Down syndrome usually understand more than they can express. As they begin to enjoy pretend play, they may join in play in the home corner - cooking or making tea with another child - joining in with the activity despite limited expressive language.

In pre-school, children with Down syndrome will benefit from being part of the group, learning to take turns and to share adult attention with other children. This is important preparation for school, especially as the child with Down syndrome may have had a great deal of one-to-one adult support for learning during their preschool years. Children with Down syndrome benefit from this support but they need to also be able to learn as part of a group and not be dependent on too much one-to-one support as they get older.

Self-confidence and self-esteem

Studies of typically developing children highlight the importance of early relationships in the family. It is the experience of being loved and valued within the family that is basic to a child’s sense of self-worth and self- confidence. If there are emotional difficulties and a child feels unloved or rejected this usually leads to social and behavioural difficulties at home and in school. In a small number of families, parents do not find it easy to accept a baby with Down syndrome and to make the usual close bonds with the baby. Research studies indicate that these relationship difficulties affect the progress of babies and infants with Down syndrome in the same way as they affect the progress of other children. [TODO: references 15] The experience of being a much loved and valued member of the family, and the resulting self-esteem and self-confidence, influences children’s academic and social progress throughout their school years and in adult life.

Understanding emotions

While the observations of parents, teachers and caregivers indicate that children with Down syndrome show good understanding of the emotions of others in real life situations, and usually respond appropriately, for example, with sympathy if someone is hurt or upset, some research studies question the children’s abilities to identify specific emotions from facial expressions. A recent review of studies of emotional responsiveness in the first two years of life concludes that ‘the process of emotional interaction develops in a similar way in infants with and without Down syndrome’ [31:p.109] The authors specifically contrast this with the situation for autistic children, for whom impairment in socioemotional abilities is a core deficit. Both groups of children may have similar ranges of cognitive and language delays but the contrast in their social understanding and responsiveness is usually very marked.

Recent studies indicating that children with Down syndrome have difficulty in recognising emotions from photographs of facial expressions [TODO: references 44] Another possibility is that, in real life situations, children have many more clues available to help them to correctly identify emotions such as tone of voice and body movements as well as situational cues as to what is happening. They may respond to a range of emotions with an appropriate emotional and behavioural reaction themselves, as described by those around them, while still not having names for the emotions and still not being able to identify them from facial expressions alone.

There is a need for further studies of the emotional understanding of children with Down syndrome over two years of age to be studied in real life situations.

Encouraging age-appropriate behaviour

In all situations, at home, at preschool and in the community, age-appropriate and socially acceptable behaviour should be expected and encouraged. It is easy for children with Down syndrome to be ‘babied’ and allowed to behave in immature ways as a consequence of their small size and language delay. However, difficult behaviour will affect children’s social opportunities and be a cause of family stress, therefore it is important to have good management strategies. This is discussed further in the [section on behaviour].

A range of social experience

Children with Down syndrome will benefit from a wide range of social experience with both adults and children. They will learn how to get on with a range of different people and experience social expectations in different situations, for example, when visiting other families or relatives, going shopping, playing in the park, eating in a restaurant, going to church, going to the mother and toddler group, going to the swimming pool and joining the playgroup or preschool. In our view, the more social experiences a child has the better; social learning can only take place in social situations and all children learn from the reactions of others to their behaviour.

The way in which children relate to others changes with age and these early competencies in engaging in communication with others lay the foundations for learning to communicate in more complex ways, to co-operate with others, to play together and to make friends.

Primary school years

Relationships with adults

Promoting social development

Most children with Down syndrome continue to be sociable and keen to interact with both children and adults in their primary school years, though the extent of an individual child’s sociability will be affected by personality and temperament. Some children will be shy, quiet and somewhat withdrawn when they enter school, others will be active, sociable and outgoing.

At five years of age, most children with Down syndrome will have significant speech and language delay, affecting their ability to communicate in the classroom, at home and in community settings. However, they usually understand more than their expressive language indicates and they are good at picking up the non-verbal communication cues such as tone of voice, facial expression and body posture. Many will still be using signs to support their communication.

Most children with Down syndrome are capable of age-appropriate social behaviour and should be expected and encouraged to behave in a manner that is appropriate for their chronological age. They will learn the routines in school by watching and imitation and should be encouraged to conform to the class and school expectations for their age. It is good for their self-esteem and self-identity to be treated in an age-appropriate way, encouraged to make choices and to take some responsibility in their daily lives, in the same way as the other children.

Like all children, the behaviour of children with Down syndrome is influenced by the behaviour, attitudes and emotions of the adults they encounter. They are quick to pick up the atmosphere and the emotional cues around them and to behave well when the emotional climate is warm and supportive and they feel safe. When they sense negative emotions of anxiety or displeasure in adults around them, their only way of showing their awareness and discomfort is to behave in distressed or unacceptable ways. Put more plainly, a child with Down syndrome who is not wanted in any setting will know, and will react with distressed or difficult behaviour. Of course, this is not the only reason for difficult behaviour; some children are difficult to manage in many situations and some are deliberately naughty in new situations.

Behaviour difficulties and the types of behaviour which may be encountered at home or at school are discussed in detail in the section on understanding and managing difficult behaviours.

Relationships with other children

The importance of friends and friendships

The relationships of typically developing children with each other have been shown to play an important part in all aspects of their social and cognitive development. [46-50] Firstly, friendships and play opportunities with others provide fun ways to spend time. Shared play and leisure activities usually provide cognitive learning opportunities as well social learning opportunities. Children find out how to co-operate together and to be part of a group, they learn how to get on together and experience both negative and positive social behaviours within play. They learn how to make and keep friends and that friends look after and support one another. They learn that friends can share experiences and problems together. They learn that friendship is based on mutual liking and regard for one another and that friends help one to feel good about one’s self. They learn about themselves, what sort of person they are, from the feedback and reactions of their friends and their peer group. This list of the functions of friendships indicates that lack of playmates and friends is a cause for concern. In typically developing children, being isolated can lead to low self-esteem, difficult behaviours and poor school performance.

Children with Down syndrome are at a disadvantage in establishing relationships with other children because of their language and cognitive delay, but it is not clear how less opportunity for shared play and friendships effects their development. They are more dependent on their brothers and sisters and their friends, parents, other family members and adults for their social relationships.

Studies of children with Down syndrome across the age range from preschool to teenage years demonstrate that they do not have as many play contacts with friends as typically developing children. [3-5] Young people with Down syndrome will often include their brothers and sisters when asked to name their friends. The friendships of teenagers and young adults are influenced by their opportunities to meet with friends and it seems that social lives and friendships are often better in adult life if adults are living in supported housing, thus giving them more social contact with others from whom to choose friends.

It might be suggested that the benefits of friendships and activities with peers may be different for children with Down syndrome depending on whether the friend is typically developing or also has a developmental disability. Playing and learning with same age typically developing friends may provide more cognitive and language gains, and encourage age-appropriate social behaviour. Playing with same-age peers with a similar level of developmental delay may provide more mutually satisfying play sessions, as play and communication skills will be similar, leading to more shared understanding and reciprocal intimacy. [TODO: references 54] Therefore, while a typically developing child will gain the social, emotional and cognitive benefits of friends from same age typically developing peers, children with Down syndrome may need two different groups of friends to obtain these benefits, friends who are typically developing and friends with Down syndrome or with a similar level of language and cognitive delay.

The effect of school placement

Benefits of friendships with typically developing children

Children with Down syndrome may go to mainstream or to special schools for their full time education and these two options will provide different social learning and friendship opportunities. Studies indicate that children fully included in a mainstream school (not in a special class or unit) will be more likely to be reported to have friends who are not disabled and less likely to have friends with a similar level of developmental disability than children in special schools or classes. [TODO: references 5]

Studies consistently report very significant benefits of full inclusion for expressive language skills and for more mature social behaviour. [TODO: references 5] Children with Down syndrome who can express themselves more clearly and competently and who know how to cope on large school sites, use the canteen and generally have age-appropriate behaviour are considerably socially advantaged, when compared to those being educated in special schools. These benefits of inclusive education will significantly help children when making friends and when participating in the community, and must be kept in mind when reading the following discussion of friendships.

Research studies ask parents to report on friendships but most studies do not define what they mean by friends, so their findings are difficult to interpret. Social relationships with others will usually range in intimacy from acquaintances to playmates to friends to close or special friends and confidants to boyfriends, girlfriends and then partners. It is the nature of the friendship that will determine its social and emotional significance.

Mixing with same age typically developing children in an inclusive school setting will provide stimulating role models for learning about age-appropriate behaviour and spoken language. It will help the child to develop more mature and age-appropriate social behaviour. However, the other children may tend to become helpers and supporters rather than equal friends, a very valuable role but different from having ‘equal’ friends. The child with Down syndrome may sense that they are different and be aware that they cannot do all that their classmates can do.

Benefits of friendships with peers with similar degree of disability

Mixing with same-age children who have similar levels of cognitive and language delays, or typically developing younger children, may provide the opportunity to enjoy more successful and satisfying play together. There is little research into the development of social relationships and friendships for children with Down syndrome during the primary years, but a recently published study of play with playmates does indicate that the level of sustained play of children with Down syndrome was better when their chosen playmate was the same age, same gender and in the same school class, whether or not they had a disability. [TODO: references 50]

The children in this study were of primary school age (mean age 8 years 2 months) and their playmates were the same age. The quality of sustained play was higher, when the pairs had been friends for more than 6 months. Children from the same classroom (whether special or mainstream) were more often ranked as friends rather than just playmates, that is, their relationship was closer and more likely to be reciprocally supportive. This may reflect the usual pattern of children’s friendships. Friendships need contact with a potential friend over time in order to develop. They also need the support of parents at this age and in this study, there was regular contact between the parents of friends. Children with Down syndrome who were being educated in special education classrooms showed qualitatively better play skills whether or not their playmate had a disability. This may be the result of more opportunity for successful and satisfying play with an ‘equal’ playmate.

It is clear that there are important benefits from having same age typically developing friends and same age friends with a similar level of learning disability, and therefore parents should try to ensure that this is the case. As children with Down syndrome progress through the primary school years they will become increasingly aware of their differences and it will be important that they have friends with Down syndrome to support understanding of their own situation. Most teenagers and adults with disabilities identify the importance of having friends with the same disability for shared support and mutual understanding. Their friendships with non-disabled peers are equally important to them. Different friendships make different contributions in people’s lives.

In school and out of school, children with Down syndrome will benefit from planned support for their social development and friendships. They will be older before they are able to walk to friends’ homes and to organise their own social lives. [TODO: references 49]

An example of planned support for children is provided by a group working in Barcelona, Spain. [TODO: references 54] They create the opportunity for children with Down syndrome from mainstream schools to meet together weekly with two aims; to develop play and social skills, and to support their understanding of having Down syndrome.

Support at playtimes and lunchtimes

Support for friendships in inclusive schools

In inclusive schools, children with Down syndrome will benefit from planned support to enable them to be fully socially included. One of the aims of inclusion in education is to try and improve the social inclusion of children with disabilities within their communities. As has been identified, they usually do not have the same range of friendships, play opportunities and social opportunities as typically developing children. One important measure of the success of inclusive education should be the number of friends and social activities the child has both in and out of school. It is hoped that friends made in school will also be friends after school, and increase social inclusion in the community.

In school, lunchtimes and playtimes are particularly important times for developing friendships and ensuring social inclusion. In our experience of supporting inclusion in mainstream schools, we have found that some children with Down syndrome are sociable and confident and will make friends and be included in playground games without any extra planning but most will benefit from explicit thought being given to their needs. Most children with Down syndrome will have significantly delayed spoken language for their age and less mature play skills. Some thought should be given to encouraging the other children to develop playground games that the child can join in. For the child to really be able to join in, the activity must be one at which they are competent. It is easy for other children to play a simpler game and they are usually pleased to do so in order to include the child.

In most inclusive school situations, the child with Down syndrome has some support from a Teaching Assistant and a key part of that role should be to facilitate social inclusion. This requires teachers and assistants to observe what happens at lunchtimes and playtimes and to think how to help the typically developing children to fully include the child with Down syndrome. The other children will be influenced by the way the adults in school relate to and include the child with Down syndrome. The attitudes and role models provided by the adults will be important in helping the other children, and an explicit discussion of disability and how it might feel to be disabled will also help the other children to think of ways of including the child with Down syndrome. The use of peer support including buddy systems, circles of friends and lunchtime clubs will help to ensure that the children are included.

Sometimes the presence of a Teaching Assistant can be a barrier to social relationships with other children. Even at the start of primary school, the other children may be more inclined to support and include the child with Down syndrome if the Teaching Assistant stays in the background. Schools in all countries vary widely in their social atmospheres and cultures. In some countries the development of inclusive schools is further advanced than in other countries. In the UK, schools do not always recognise that the biggest resource that they have to support inclusion is all the other pupils and generally, schools are making very little use of this resource. The tendency is to look for another adult to support a child rather than to consider ways of involving and supporting the peer group to include a child. Involving other pupils is important if one goal of inclusion is to increase the participation of children with Down syndrome in the social community out of school and if attitudes to disability are to be changed in the whole generation of children who will become their neighbours and workmates. The first author has observed that many schools in the USA and Canada are further advanced in developing inclusive communities. In these countries the children are more involved as the main supporters for the practical and social support of children with special needs, and explicit planning with children and parents ensures that children continue to be included in social activities outside school time. For example, pupils and parents will work with staff to plan circles of friends to cover holidays and transitions to a new school.

Friends out of school

Friendships with typically developing children out of school are likely to need planning and support from parents, in addition to the use of strategies developed from school as suggested in the last section. In our experience, friendships in the community are not increasing simply as a result of children being included in schools in their community. In a study of friendships in primary schools, the children with Down syndrome were averagely popular within school. [TODO: references 53] For example, they were chosen as often as most other children as someone to play with or to sit with at lunch but they were not invited home to play after school as often as other children. The study could not suggest why this was the case, but it might reflect the attitudes of the other children’s parents. They may not feel confident about having the child with Down syndrome to play at their house. It seems to be necessary for parents of children with Down syndrome to take the lead and to invite other children in the class or neighbourhood to their home. It is probably important to deliberately make friends with the parents of other children and actually to ask them to help by thinking specifically about including the child with Down syndrome. The parents of typically developing children may not understand the real risk of limited social experience for children with disabilities unless they are explicitly made aware of this.

Fortunately, in many communities, children with Down syndrome are welcome in clubs and community activities to a much greater extent than was the case twenty years ago. However, the ability of children with Down syndrome to benefit from such community acceptance will depend on their behaviour. The child who cannot follow the rules or is disruptive is less likely to be welcome at community or church activities.

The range of friendships out of school

Support for friends in the community

As has already been stressed, the word ‘friend’ is used to cover a range of relationships, from acquaintances to playmates to close friendships. Most children and adults benefit from a wide range of friendships, and studies show that social networks of friends and relationships are important for emotional well-being. Teenagers and adults who are socially isolated are more vulnerable to depression and less able to cope with inevitable life crises such as the death of a relative.

Some authors have identified that the friendships of children with disabilities and their non-disabled peers are often of the ‘helping’ kind. [TODO: references 49] Making friends who will be regular playmates or close friends takes time. Children need to spend time together to establish friendships and this will be equally true of friendships with disabled or non-disabled friends.

It has already been suggested that friends with a similar level of learning disability and friends who also have Down syndrome may play a particularly important role in the lives of children with Down syndrome. Parents will need to ensure that children have the opportunity to make friends with others with disabilities by inviting them to play, keeping contact with their families and finding social activities that include children with and without disabilities. Most parents make friends with families who also have children with disabilities during the preschool years and it is important that these friendships are maintained once children start full time school, especially when they are included in mainstream schools. In many mainstream primary schools the child with Down syndrome will be the only child with their level of learning disability and therefore they will not find friends with disabilities in school.

In our view it is essential for the well-being and adjustment of children with Down syndrome that they are not denied friendships with others with disabilities as they grow up. Friends with Down syndrome or a similar level of learning disability may be important for two main reasons - close, mutually supportive, intimate relationships, and support for understanding one’s disability. Self-identity and understanding the long-term implications of having Down syndrome is a process that takes place over many years and, in our experience, many children and teenagers are more aware of their differences and disability than they can express. There is some evidence to suggest that being included in mainstream education can lead to isolation from this friendship group and that this may deny the teenager and adult the opportunity for intimate special friends, boyfriends, girlfriends and partners in late teenage and early adult years. [TODO: references 5] To prevent this outcome, it is important to maintain friendships with other children with Down syndrome during the primary school years.

Relationships with brothers and sisters

Brothers and sisters play a very important part in the lives of children with Down syndrome, as they often depend upon them for playmates and friends in the primary years and beyond. Some studies indicate that there are similar or even fewer difficulties between brothers and sisters in families with a child with Down syndrome than in families without a child with a disability. In one study, [TODO: references 15] only 2% of the mothers with a child with Down syndrome had any significant concerns about the relationships between brothers and sisters, compared with 13-19% of the mothers in the comparison families.

Parents frequently report that they feel their other children have become more tolerant and understanding of others as a result of having a brother or sister with Down syndrome. However, the effect on others in the family will vary according to the level of difficulties of the child with Down syndrome, the attitudes of the parents and on how they cope with the demands. Studies show that when the family is struggling and experiencing considerable stress, all the children will then show signs of distress.

Teenagers and young adults

Relationships in the teenage years are characterised, in typical development, by increasing independence from the family and the increasing importance of the same-age peer group of friends. Young people increasingly establish their own group of friends, close friends and then partners as they build their own lives. All the studies of teenagers with Down syndrome identify that this is not happening for them at the same age and in the same way, mainly as a result of limited communication and lack of independent travel skills. Teenagers with Down syndrome are still dependent on their families to organise their social lives for them. [3-5]

Key issues for all teenagers

Adolescence is a time of great change for all young people, in terms of physical and brain growth, and development of adult and sexually mature bodies, in terms of moving towards adult roles and responsibilities in society and in terms of being increasingly responsible for social and leisure activities and life choices. The physical changes for young people with Down syndrome are taking place at the same age as they are for typically developing teenagers. They are coping with the same developments in sexual maturity and most cope well. However, the opportunity to have boyfriends and girlfriends would seem to be delayed to later adolescence and young adulthood for most young people with Down syndrome. It is not clear at the present time how much this has to do with the expectations of those around them and the opportunities that they have to date, and how much it is to do with delayed social maturation. By late adolescence, many teenagers are identifying special friends, girlfriends and boyfriends. Families often find the expressed desires of teenagers, for marriage and children, or for a house of their own, unrealistic and difficult to deal with, but these young people are taking other adults around them as role models and, unless someone discusses the implications of their disability with them in an honest way, they will continue to have those expectations. Many of their expectations for adult life and independence are not completely unrealistic, and can be achieved with support - for example independent living and even home ownership, a partner and work can all be achieved. Parenthood will need to be discussed honestly if raised by the young person, with all the complexities and ethical issues that this raises. Appropriate sex education and contraception are a right for all individuals, with respect for their rights as adults.

Self-identity and friendships

See also:

During the teenage years all young people become more self-aware and teenagers with Down syndrome become increasingly aware of their disability, particularly in their mid to late teens. As they see school friends and brothers and sisters with boyfriends or girlfriends, staying out late, going to clubs, learning to drive the car, getting jobs and leaving home, most teenagers with Down syndrome become well aware that these things are not happening for them in the same way. There are many issues here which are discussed more fully in the teenage modules, but it can be argued that parents need to recognise the importance of special friends at this age - particularly friends who are having the same experiences because they also have a disability.

Our studies, and others, suggest that it is important to join clubs and activities which give teenagers the opportunity to meet friends who also have a disability, in order to find the understanding and mutual support that comes from shared situations and in order to find close, mutually supportive friendships and relationships. [TODO: references 5] This may happen more easily when teenagers are in special schools where they may be more likely to go to special clubs and activities with their school friends. Parents of teenagers included in mainstream schools may need to seek out these opportunities.

Many parents of late teenagers and young adults recognise the risk of social isolation and the continued need to make sure that their young people do have the chance to find friends by organising clubs and discos, and finding leisure and sporting activities.

Relationships in the family

Most young people with Down syndrome continue to be sociable and have reasonably good relationships with others during their teenage years. In terms of behaviour difficulties, young people with Down syndrome tend to become easier to manage as they get older. Most young people adjust to puberty without significant difficulties and possibly display fewer relationship difficulties in their early teenage years than do typically developing teenagers. However, sometimes adjustment difficulties can be an issue in teenage years, linked to the teenager’s growing awareness of the reality of having Down syndrome and the limitations this will impose in adult life. Some young people have a period of depression or withdrawal, and some have a period of difficult or aggressive behaviour, as they often are unable to discuss their feelings with either friends or family. It is important to help the teenager to value what they can do, rather than dwell on differences, to build their self-esteem.

Many young people are more aware of their life situation than might be assumed and with the changes of puberty, many teenagers with Down syndrome show age-appropriate interest in the opposite sex and in teenage culture. For example, Roberta, the daughter of the first author, wanted to wear her jeans to school and sit with the boys on the bus from the age of 13 years, when she reached puberty. She knew all the current pop stars, the prominent football teams and the activities of the ‘soap’ stars. She was behaving like a teenager and showing that she had the same emotional and social needs as others of her age, despite significantly delayed language and cognitive skills, and no reading or maths abilities at all. Roberta has gone on to become quite confident and independent as an adult. She has consistently demonstrated that she has age-appropriate social and emotional needs, the need for privacy, a home separate from her family, and the right to make her own choices, the need for educational opportunities, work, leisure activities, friends and close relationships. She was only able to show these age-appropriate needs by having the opportunity to experience them through supported living in the community. As far as can be assessed by observation of her behaviour and her self-confidence, her sense of self-identity and self-esteem has changed positively as a result of her experiences through being allowed and encouraged to be an adult, though she would be unable to express this in words. She has learned appropriate behaviour by imitation of others and by experience - through observing and participating.

See also:

The need to recognise that the young person with Down syndrome has the right to become an adult has to be stressed. This is often the most difficult step, even for parents who have been progressive in fighting for inclusion in education and work. An adult has the right to the full range of adult relationships, to living with independence and to a range of social opportunities in the community. Most adults with Down syndrome would identify their really close friends as being others with similar levels of ability and interest - like most other people - and they will also choose partners with similar needs.

Relationships in school

Promoting social development for teenagers

Many of the issues discussed in relation to friendships in school and out of school in the section on primary school years are equally relevant to the secondary school years. The social inclusion of teenagers in and out of school needs to be planned and supported. Many teenagers with Down syndrome in mainstream schools have friends and are socially included, but some teenagers have considerable difficulty and become socially isolated. The temperament, personality, behaviour and language abilities of a young person can all influence their social confidence and social inclusion.

In order to have the opportunity for a full range of friendships, parents and teachers will need to create opportunities for young people. Our studies show that school placement does influence friendships. Teenagers in special schools tend to have more friends with special needs and less contact with typically developing peers, while the reverse is often the case for teenagers in inclusive school placements.

A study [TODO: references 51]

In school, staff reported that adult support was needed to include the young people with Down syndrome in lessons, in breaks and lunchtimes. Most young people with Down syndrome were not choosing partners or including themselves in groups. They sometimes joined in talk but rarely initiated it.

Parents reported that it was often difficult for friendships made in school to be continued out of school as the friends lived too far away. The young people engaged in leisure activities at home such as listening to music, engaging in hobbies or watching TV. These reports of solitary leisure time are similar to those reported in the two teenage studies carried out by the authors. [TODO: references 5] Parents identified that it would be helpful to have more organised leisure opportunities available for their young people in the community, particularly during school holidays, and most parents were concerned about their teenager’s social lives, recognising that it would be good for them to have more friends and activities.

The friendship and conversation patterns reported in this study may, in part, be the result of the speech and language skills of the teenagers with Down syndrome. Most teenagers do not have fluent and intelligible speech, and they may have learned that when they initiate a new topic they are not always understood. If they join in a conversation for which the topic is already established, they are more likely to be understood. In other words, not initiating conversation may actually be an effective strategy, providing the teenager does join in the conversation once it is started. There is some evidence that this is the case, as another study of social interactions in inclusive settings indicated that, while the teenagers did less initiating, they were involved in as many social conversations as their typically developing peers. [TODO: references 52]

The dependency on adults to support social inclusion could, in part, be the result of too much adult support for a child since primary school. In other words, too much adult support may have prevented the child from learning how to interact with other children in a natural way, and may have prevented other children including and befriending the child naturally.

Some longitudinal research studies are needed to further our understanding of the social and friendship skills of children and teenagers with Down syndrome and, in particular, the role of adult support styles in influencing their progress in inclusive school settings.

  1. Play and leisure skills

Preschool years

The ability to occupy oneself in self-satisfying play or leisure activities is clearly important in children’s development. If a child is not able to gain pleasure from playing with toys or other activities, they are likely to seek out adult attention or, over time, resort to passive entertainment provided by the TV or video machine and will miss out on self-motivated learning experiences. Temperament and attention, as well as mental ability, play a part in children’s ability to sustain play. Some children, such as those with limited attention spans, a tendency to be distractible or to be overactive and restless, may be more vulnerable and need more help to learn to occupy themselves.

In fact, research studies indicate that many children with Down syndrome develop good play skills, including representational or pretend play and that their play skills are often as good or better than those of children of similar developmental age, with or without developmental disabilities. [TODO: references 1]

Encouraging early play skills

However, all play skills will be influenced by delayed motor skill development as noted by Anne Jobling in a recent review of the area. [TODO: references 56] Fine motor skills are needed to manipulate toys, puzzles and building toys while gross motor skills will influence the ability to join in active games such as play in the park and social games in the playground. Despite delay, researchers indicate that the play of infants with Down syndrome progresses in the same way as that of other children but that there may be a tendency for more passive play and for more repetitive play, that is, repeating the same actions and activities more frequently and having a smaller repertoire of play actions.

Some children with Down syndrome may need more support than typically developing children to learn how to play, as they may be slower to explore toys and develop play activities for themselves. Initially this may be showing them what they can do with toys and taking turns in playing with the toy to model the play possibilities of the toy. Their ability to manipulate toys and play with construction toys such as Lego may be hampered by delay in developing the necessary fine motor skills.

When encouraging play, try to follow the child’s lead and extend (scaffold) their play. When helping children, avoid being too directive, always initiating and organising play, as this may reduce their ability to self-direct play over time, rather than encourage it.

Imaginative (pretend) play with dolls or cars may also need to be modelled to help a child to begin to engage in such play. Shared activities such as playing with toys and reading books together increase children’s ability to sit still and attend. Learning to play and to engage in enjoyable activities by oneself is an important life skill. As children with Down syndrome get older, many enjoy drawing, colouring and writing activities.

Play with other children is considered important for the social development of children, as they learn about relationships and how to co-operate in social play. In social pretend or imaginative play, children act out adult roles and social play is also considered to contribute to children’s growing understanding of themselves and self-identity. Some children with Down syndrome engage in social and pretend play with other children at home and at school, but some will need help to do so, perhaps by asking other children to think of ways of including them, and by sensitive adult support to facilitate such games.

Sporting and leisure activities such as swimming, gymnastics, dancing and football can all be started in preschool years with benefits for health and fitness as well as increased opportunities for social inclusion with other children. Many children who find quiet play with toys not very interesting or rewarding will enjoy physical activities such as playing football or swimming.

Primary school years

Encouraging play in school years

During the primary school years, play with other children becomes increasingly important and some of the issues around this have been discussed earlier in relation to children’s friendships. Some children with Down syndrome develop good pretend play skills and can enter into co-operative play with other children but others will have more difficulty. To encourage inclusion in the playground in primary years, it is important to identify the current play fashions, that is, the popular toys and games of the peers, and ensure that the child with Down syndrome is aware of these.

In addition to play skills, leisure skills become increasingly important in providing opportunities for social activities and for social inclusion. If a child or young person can swim, play football, dance, go bowling, or do gymnastics, for example, they will be able to benefit from games and club activities into adult life. Sporting skills will have benefits for health, fitness and motor development as well as for social contacts, social learning and friendships from infancy to adult life. Sporting skills provide opportunities for friendships with peers with or without disabilities.

Teenage years

Studies show that the leisure interests of teenagers with Down syndrome are similar to those of all teenagers. They are knowledgeable about the football or baseball teams, the current pop groups and the current TV soaps or popular TV series. Most teenagers enjoy discos and the opportunity to dance as well as community activities such as bowling, visiting the cinema or the theatre. Like most other people, they also enjoy the opportunity to eat out in restaurants, or have a drink and a game of snooker in the pub.

See also:

Teenagers are likely to need parental support and encouragement to develop their social lives, as few have the independent travel skills to go out and about in the community without support. They are at risk of spending more time in solitary pursuits such as watching the TV or video than typically developing teenagers.

The benefits of sporting activities become clear during the teenage years and several authors have drawn attention to the benefits of sports for young people with Down syndrome. [TODO: references 57] The Special Olympics movement provides young people in many countries with a valued range of social experience with peers with and without disabilities. A range of leisure and sporting activities is available in all communities, from swimming, snooker, dancing and bowling to football, athletics and sports that need more specific skills. Sporting activities can also be important for health and fitness during the teenage years as there is an increasing tendency for young people to become overweight after puberty.

Several studies have identified the tendency for teenagers and adults with Down syndrome to talk to themselves [TODO: references 4] As identified in this list, self-talk may also be linked to a degree of social isolation as it can be talk to imaginary friends and talk during solitary activities in the bedroom.

  1. Independence and self-help skills

The ability to take care of everyday personal and social needs clearly improves the quality of life for any child or teenager. It is also important for children’s sense of self-esteem and control over their lives. While most milestones in independence will be achieved later for children with Down syndrome than for typically developing children, the evidence suggests that by late teenage and early adult years most young people with Down syndrome do achieve a high level of autonomy in daily personal care. [TODO: references 5] Their independence skills outside the home are improving but many still need supervision.

There will be individual differences in rates of progress towards self-sufficiency and studies show a general link with cognitive skills, that is children who are progressing faster on cognitive measures are likely to also progress faster with self-help skills. However, family styles also have an influence for most children, in addition to cognitive ability. [62-64] Parents who use practical coping strategies, seek out support and advice, and have more extensive social networks, have children who progress faster in social independence.

Encouraging practical independence

In some areas, it is probable that parents and carers should have higher expectations and should consider the possibility that they are still doing more than is necessary for the young person with Down syndrome. There is a link here with a point made in the section on friendships. It is very important to recognise the right of adults with Down syndrome to be adults and to gain as much privacy, independence and autonomy as possible. Independence also contributes to a young person’s self-esteem. Privacy is a particularly important issue to consider. It is not helpful to have to assist a teenager in the bath or shower for any longer than is absolutely necessary, as it reduces their right to privacy. It is easy for parents to go on helping young people for longer than is necessary, rather than think about how to teach them to wash and rinse their own hair, fill the bath, set the temperature on the shower or cut their own nails using clippers.

In order to become independent, it will be necessary to recognise that some risk-taking is inevitable. Using a kettle or cooker, walking to the shop and crossing the road all carry risks. Risks can be minimised by designing training for each activity in small steps.

Children with difficult behaviours make less progress in independence, as do the 10% of children with the most severe developmental delays. We feel that this latter group of children and teenagers should be seen to have different needs from the majority of children with Down syndrome. Parents may wrongly blame themselves for the slow progress of their children when, in fact, their child has multiple difficulties delaying their development.

Table 1. Achieving independence in self-help skills
Meals |
Feeds self with biscuit | 10 months (range 6 -14m) |
Drinks from a cup | 20 months (range 12 - 30m) |
Uses spoon and fork | 20 months (range 12 -36m) |
Can make a sandwich | 50% at 11 - 20 years |
Can make a cup of tea/coffee | 46% at 11 - 20 years |
Can heat a can of beans | 28% at 11 - 20 years |
Can use microwave | 24% at 11 - 20 years |
Can lay and clear table | 80% at 11 - 20 years |
Can eat in a restaurant | 100% at 11 - 20 years |
Toileting |
Dry during the day | 36 months (range 18 - 50m) |
Bowel control | 36 months (range 20 - 60m) |
Dry at night | 60% at 7 - 14 years |
Use toilet/potty without help | 4 to 5 years |
Fully continent, day and night | 98% at 11 - 20 years |
Washing/personal care |
Washes unaided | 60% |
Can brush hair | 95% |
Does brush own hair | 45% |
Can wash hair | 34% |
Can run/fill bath | 50% |
Can cut toe and fingernails | 9% |
Motor skills |
Walks alone | 23 months (range 13 - 48m) |
Climbs/descends stairs unaided | 81 months (range 60 - 96m) |
Can ride a bike | 35% at 11 - 20 years |
Can throw and catch a ball | 98% at 11 - 20 years |
Dressing |
Dresses self partially (not fastenings) | 4 - 5 years |
Dresses without help | 80% at 11 - 20 years |
Chooses appropriate clothes | 70% at 11 - 20 years |
Practical/Social |
Can tell the time | 20% at 11 - 20 years |
Can count simple amounts of money | 40% at 11 - 20 years |
Can go to shop alone | 26% at 11 - 20 years |
Crosses road alone | 40% at 11 - 20 years |
Note: Mean age of achievement in preschool years [TODO: references 61] |

Infancy and preschool

Important milestones on the way to personal independence are usually gained in the first five years of life and, while children with Down syndrome do take longer to reach them, the figures in [Table 1] illustrate that they are usually making good progress by five years. Most children are walking, able to partly dress, able to feed themselves with a spoon and fork and are toilet trained. Children vary widely in rates of progress and there is little information on the best way to encourage independence. Personality and temperament play a part, with some children happy to be helped to learn in small steps and others refusing help to learn but doing things entirely for themselves once they can. Toilet training is a particular issue for many parents and our practical experience suggests that a daytime training routine should be planned and consistently implemented by about 3 years of age. Most children with Down syndrome can be trained by 4 years, though not all, as some may have greater developmental delay or other physical reasons for delay. However, most children starting school at 5 years are trained by a consistent approach within weeks, suggesting that training could have been achieved earlier.

Primary school years

During the primary school years of 5 to 11, children with Down syndrome steadily improve their self-help skills. In the main, they are developing and refining skills that they have begun to master in the preschool years, such as becoming less messy at eating and drinking, improving their fine and gross motor co-ordination in writing, managing fastenings, hopping, jumping and becoming able to manage all toileting procedures without any assistance.

It is important that parents and teachers let children do as much as they can for themselves. There is always the temptation to help or do it for the child because it is quicker but this is not in the child’s interest. Practice is needed to perfect skills and it is also important that children take responsibility for themselves for the sake of their sense of control over their lives and their self-esteem. Data on this issue is not available for this age group but data for teenagers in the next section highlights a tendency to continue to help even when the young person is competent.

Teenage years

During the teenage years, most young people with Down syndrome become quite independent in personal care skills, as the figures in [Table 1] indicate. Almost all young people can wash, dress and use the toilet without help. However, there are areas where parents need to encourage further independence. For example, 95% of teenagers can brush their own hair but only 45% actually do so each day. This suggests that parents still find it quicker and easier to brush their teenager’s hair for them or that parents feel that they can produce a better result themselves. These are important points to be considered by all parents. Many parents do report that they still dress teenagers, even though they could dress by themselves, because it is quicker. Many parents report that they still help teenagers with tasks because the end result is then neater, cleaner or smarter. However, the teenagers’ own skills will only improve with practice, and parents need to be prepared to accept a less than perfect result while the teenagers are learning. This is often hard to do and the first author has clear memories of finding it very difficult not to tidy up her daughter’s appearance when she began to choose all her own clothes and dress without help. She also found it difficult to resist the temptation to tidy her hair for her. Even more difficult was accepting that independence in the toilet might result in stained pants until her daughter had had some practice at wiping herself.

Young adults

Many young people continue to develop independence in their early adult years. Like most other young adults, they often take significant steps in taking charge of more aspects of their daily lives if they move out of the family home into some form of supported living. Most young people are happy to let their mothers continue to do the cooking, shopping, laundry and the cleaning while they live at home! Most young adults with Down syndrome can take care of their laundry and their domestic cleaning, they can make simple meals, they can take care of their personal hygiene, and they can take care of their own money in bank and savings accounts, with minimal support. It is often at this stage that young people become more independent in travelling in their communities, using buses and taxis.

A noticeable increase in self-esteem and self-confidence is often observed in adults when they have a home of their own, independence, privacy and control over decisions in their daily lives.

  1. Social behaviour

The importance of age-appropriate behaviour

One of the most important tasks for all parents is to guide their children into developing age-appropriate behaviour 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 behaviour 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 behaviour.

Influences on behaviour

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

In our experience, competent social behaviour 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 behaviour, will not achieve the same success in independence and work when they are adults.

The importance and future significance of the good social behaviour 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 behaviour of children with Down syndrome - research findings

Children with Down syndrome may be expected to progress more slowly in achieving age-appropriate behaviours, as their communication skills and understanding may be progressing more slowly. However, studies of the behaviour of children with Down syndrome do not give a consistent picture; some seem to indicate more behaviour 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 behaviour of children with Down syndrome is not different. For example, the largest detailed study of the behaviour of children with Down syndrome was conducted by Cliff Cunningham, Pat Sloper and colleagues in Manchester. [TODO: references 15] reported that 14% had major behaviour difficulties. Some 40% of the mothers in both groups had some concerns about their children’s behaviour, reflecting the typical demands of parenting.

The behaviour of children with Down syndrome

A different pattern of behaviours

Although the overall incidence of difficult behaviours 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 behaviour 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 behaviours. A further one in ten children still showed some embarrassing behaviours such as shouting, being aggressive, or taking their clothes off inappropriately or some anxious or obsessional behaviours such as nail-biting, thumb or finger sucking or twiddling objects. These behaviours do not necessarily have the same significance for children or their parents and different types of behaviour 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 behaviours should not be underestimated, studies show that at least two-thirds of all children with Down syndrome do not have significant behaviour difficulties even when compared with their same age typically developing peers.

See also:

In the studies of the authors and their colleagues, 16-30% of teenagers with Down syndrome were rated as having a significant level of behaviour difficulty, depending on the type of behaviour being assessed, compared with 5% of typically developing teenagers of the same age. However, 53-62% (depending on the behaviour 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 behaviour difficulties than peers with learning difficulties

Another important finding from many studies is that children with Down syndrome show fewer behaviour 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 behaviour 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 behaviour itself that causes stress, and those families with children with Down syndrome who have persistent behaviour difficulties over time are significantly stressed and need additional support, in the same way as families of children with other diagnoses. Many of the behaviour difficulties that these families are dealing with could be reduced with the right management strategies but it is not easy to change behaviours that have become habits without professional support to plan a change programme as well as emotional and practical support while it is implemented.

Improving with age

The research studies also show that the incidence of behaviour 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 behaviours. [TODO: references 37] This improvement with age is illustrated in the sections discussing specific categories of behaviour below.

Few adults with Down syndrome have any behaviour difficulties. A large study of over 1,000 adults in Chicago USA indicates that some 9% of adults have some behaviour difficulties compared with the data suggesting behaviour 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, recognising that many behaviours are linked to cognitive and language delay, while still encouraging good behaviour 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 behaviour difficulties, two issues need further consideration, the extended period for behaviour 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 behaviours.

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 behaviours. However, the family will have been coping with immature behaviours over a longer time period and the behaviours may have been causing disruption to family life over a longer period. Behaviours that have been practised 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 behaviour 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 behaviour difficulties

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

These two groups of children need skilled behaviour management and parents of children with Down syndrome should have access to advice and support for behaviour 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 behaviour. High levels of anxiety will influence children’s social behaviour 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 behaviour can be linked to slow development, as can obsessional behaviours, making it difficult to determine whether these behaviours 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 recognised by clinicians. [TODO: references 73] When a child is making slow progress in play and in communication, they often develops behaviours 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 behaviours on their own are not diagnostic of autism or ADHD but simply reflect the child’s current level of cognitive and communicative ability. These behaviours 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 behaviours in which the behaviours of children with Down syndrome were compared with the behaviours of typically developing children matched for mental age, the incidence and types of behaviours 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 behaviours are seen in all children and reduce with age. However, the children with Down syndrome engaged in the behaviours more often than the comparison children, but both the number and frequency of the behaviours 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]

See also:

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 behaviour can be seen even in older children when they are in hostile environments such as an unhappy, rejecting classroom environment. Their disturbed and ‘autistic’ behaviours 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 behaviour 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 behaviours

Most studies of behaviour difficulties simply count the number of difficult behaviours, regardless of the type of behaviours the children are showing. Some studies take account of the severity and frequency of the behaviour 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.

Mothers’ ratings** of the significance
of behaviour difficulties on a scale of 1 - 4** [TODO: references 66]

(1 = not a problem

2 = a nuisance only

3 = a slight problem

4 = a definite problem)

In our experience, not all behaviours 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 behaviour difficulties by parents in one research study (see box). [TODO: references 66] The causes of all behaviours 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 behaviours which may be seen, they are described in 6 main groups, based on our attempts to group them into significantly different types of behaviours 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:

In the next section each of these groups of behaviours is discussed. The incidence of behaviours 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 behaviours are, and the studies illustrate that most difficult behaviours 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 behaviours in the past month, and therefore the behaviours 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 behaviours

The authors have divided the behaviours into 6 groups on the basis of the types of behaviours 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 behaviour cause different types of difficulties for families and some behaviours 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 behaviour 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 behaviour 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 behaviours 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 behaviours around the daily routines of eating, toileting, washing or dressing, or going to bed and sleeping.

Difficult behaviours 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 behaviour 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 behaviours 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
Eating | 7-14 years | 11-17 years | 11-20 years |
Poor eater | 16 | 2 | - |
Faddy eater | 49 | 24 | - |
Eats same food as family | - | - | 82 |
Based on data from Manchester [TODO: references 37] studies |

Behaviour 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 behaviour 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
Continence | 7-14 years | 11-17 years | 11-20 years |
Day wetting | 28 | 9 | 9 |
Night wetting | 38 | 19 | 2 |
Soiling accidents | 20 | 8 | 2 |
Based on data from Manchester [TODO: references 37] studies |

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 behavioural element with accidents being rewarded by attention.

Sleeping

Table 4. Percentage of children with sleep difficulties
Sleep disturbance | 7-14 years | 11-17 years | 11-20 years |
Settling at bedtime | 43 | 26 | 21 |
Wakes at night | 51 | 34 | 14 |
Sleeps with parents | 28 | 11 | 2 |
Sleeps with sibling | 12 | 3 | - |
Night wetting | 38 | 19 | 5 |
Based on data from Manchester [TODO: references 37] studies |

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 behavioural. There is good evidence that the incidence of behaviour 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]
Disorders of initiating and maintaining sleep |
| Down syndrome | Comparison |
Settling | 20 | 9 |
Waking in night | 32 | 10 |
Early waking | 17 | 6 |
Reluctant to go to bed | 26 | 22 |
Insists on sleeping with someone | 9 | 3 |
Features of breathing disorders at night |
Mouth breathing | 73 | 33 |
Restlessness | 60 | 26 |
Loud snoring | 43 | 10 |
Sleeps with neck extended | 30 | 5 |
Apnoeaic episodes | 12 | 1 |
Gags/chokes | 7 | 1 |
Other disorders/behaviours during sleep |
Sleep talking | 19 | 8 |
Teeth grinding | 17 | 8 |
Bedwetting | 16 | 2 |
Head banging | 7 | 3 |
Nightmares | 0 | 1 |
Sleepwalking | 3 | 1 |
Night terrors | 0 | 0 |
 |
Has own room | 78 | 80 |
Has bedtime routine | 75 | 65 |
Total sleep time - mean (SD) | 9.8 (1.43) | 10 (1.03) |

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;

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 ‘behavioural’ and ‘physical’ problems. They see behavioural 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 behaviour 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;

See also:

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 behaviour problems. All the sleep disturbed groups had significantly higher ratings for daytime behaviour difficulties and their mothers had higher stress ratings. However, the group with sleep maintenance problems had significantly worse daytime behaviour 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 behavioural 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 behavioural 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 behavioural 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 behaviour difficulties. Lack of sleep makes anyone irritable and lowers tolerance levels, so that sleep difficulties should always be investigated before just assuming that a behaviour management programme needs to be implemented for the particular daytime behaviours.

Temperamental difficulties

BBehaviour difficulties may reflect the underlying temperament of the child, and on measures of overactive or impulsive behaviour 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 behaviours 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 behaviours are likely to represent a change in the child’s typical behaviour.

Table 6. Percentage of children with overactive behaviours
Overactive, impulsive behaviours | 7-14 years | 11-17 years | 11-20 years |
Is overly active, always on the go | 41 | 21 | 18 |
Is impulsive | - | - | 23 |
Restless in a squirmy sense | - | - | 10 |
Has difficulty waiting in line | - | - | 10 |
Has difficulty playing/leisure activity quietly | - | - | 8 |
Fidgets with hands, feet, squirms on seat | - | - | 18 |
Based on data from Manchester [TODO: references 37] studies |

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
Attention, concentration difficulties | 7-14 years | 11-17 years | 11-20 years |
Distractible, inattentive | - | - | 10 |
Short attention span | - | - | 30 |
Has poor concentration | - | - | 48 |
Only attends if very interested in activity | - | - | 10 |
Distractible when given instruction | - | - | 15 |
Based on data from Manchester [TODO: references 37] studies |

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 behaviours

Table 8. Percentage of children with habits, rituals and anxious behaviours
Habits, rituals and anxious behaviours | 7-14 years | 11-17 years |
Sucks thumb, fingers | 34 | 20 |
Sucks objects | 17 | 3 |
Bites nails | 27 | 15 |
Picks/pulls hair/skin/nails | 22 | 11 |
Makes noises, giggles | 30 | 19 |
Grinds teeth | - | 27 |
Twiddles object | 23 | 11 |
Tics/nervous movements | 28 | 15 |
Rocking | 10 | 4 |
Ritual behaviours | 14 | 11 |
Plays with genitals in public | 29 | 14 |
Exhibits extreme anxiety | - | 23 |
Worries, broods | 10 | 7 |
Fears, phobias | - | 52 |
Withdraws | - | 23 |
Does not like change | - | 65 |
Based on data from Manchester [TODO: references 37] studies |

Another group of behaviours is illustrated in [Table 8]. These behaviours 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 behaviours may vary and increase when children are upset or anxious. The Manchester studies have shown that this group of behaviours 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 behaviours 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 behaviours 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 behaviours, 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 behaviours are quite common among children with Down syndrome. The studies report such behaviours 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 behaviours 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 behaviours 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 behaviours 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 behaviours 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’ recognises 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
Management difficulties | 7-14 years | 11-17 years | 11-20 years |
General management difficulties | 60 | 43 | - |
Attention seeking | 42 | 28 | - |
Rude and cheeky | 64 | 50 | - |
Argues with adults | - | - | 23 |
Angry, resentful | - | - | 10 |
Temper tantrums | - | - | 22 |
Irritable | 19 | 11 | 13 |
Actively defies adults | - | - | 23 |
Deliberately does things to annoy | - | - | 8 |
Shows lack of consideration | - | - | 32 |
Is stubborn or sullen | - | - | 30 |
Swears (inappropriately) | - | - | 23 |
Runs away | 52 | 21 | 18 |
Lies, cheats, steals | - | - | 16 |
Too physically aggressive | - | - | 27 |
Hard to control in mall/shops | - | - | 10 |
Based on data from Manchester [TODO: references 37] studies |

However, there are behaviours 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 behaviour. It may be more important to expect and encourage good behaviour 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 behaviour.

The ability to control or self-regulate behaviour 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 behaviour.

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 behaviours that gain attention or a particular reaction, like being chased when running. The child then repeats the behaviours to obtain the reaction from the adult and a cycle of reinforcement of the behaviour is set up.

It is helpful to think of most conduct difficulties in this way, that is, that they are behaviours that are being carried out because the child is rewarded by the reaction they provokes. This means that to stop the behaviour, the adults with the child must change their reactions to the behaviour. 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 behaviour must not be rewarded.

In our view, it is helpful to think about prevention of the behaviour 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 behaviour, and a detailed discussion of how to evaluate a difficult behaviour, prepare a management strategy and carry it through successfully, with full examples, is contained in the module on changing behaviour.

Antisocial behaviours

Table 10. Percentage of children with aggressive or antisocial behaviour
Aggressive/antisocial behaviours | 7-14 years | 11-17 years | 11-20 years |
Hurts others | - | 7 | - |
Aggressive gestures/threats | 31 | 18 | - |
Swears | 42 | 28 | - |
Takes toys, belongings | 58 | 32 | - |
Fighting in school | 24 | 11 | - |
Shouts/screams | 27 | 12 | - |
Throws toys/objects | 36 | 17 | - |
Breaks, damages objects | 19 | 11 | - |
Spits | 23 | 10 | 5 |
Lies | 15 | 12 | 16 |
Teases and bullies | - | - | 14 |
Based on data from Manchester [TODO: references 37] studies |

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

Antisocial or aggressive behaviours are usually maintained by the reactions they get, even if they started as exploratory behaviours, 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 behaviour is taking place in a school setting. For example, children need to know that they must not laugh at a behaviour 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 behaviours of children with obvious disabilities. Children of junior school age (8-11 years) were much more tolerant of difficult behaviour 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 behaviour is unacceptable to peers.

See also:

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

Overview of behaviour issues

The behaviour 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 behaviours. However, behaviour 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 behaviour in order for the child to succeed, especially when included in age-appropriate classes and activities. It is also important to encourage age-appropriate behaviour 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 behaviour despite their delays in language and cognitive development.

Preventing and managing behaviour difficulties

Parents need advice on prevention and management of behavioural 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 behaviour 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 behaviour means changing the adult reaction to the behaviour. Virtually all management and antisocial behaviours 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 behaviours can be stopped - at home or in the classroom.

However, before identifying a behaviour as a problem, it is important to remember that behaviours 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 behaviour is to correct the underlying causes. In these situations, the behaviour is not attention seeking in nature.

Most children with Down syndrome can be expected to have good social behaviour 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.

Summary

The main conclusions that can be drawn about the social development of children and teenagers with Down syndrome from research and practical experience are that:

Acknowledgements

The authors would like to thank all the children, teenagers and adults with Down syndrome, and the families and practitioners that they have been privileged to work with over many years. We hope that all we have learned from them is reflected in our writing. However, the opinions expressed and any errors remain the sole responsibility of the authors.

Terminology

The term ‘learning difficulty’ is used throughout this module as it is the term currently in common use in the United Kingdom. The terms ‘mental retardation’, ‘intellectual impairment’, and ‘developmental disability’ are equivalent terms, used in other parts of the world.

References

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