Social understanding, friendships and relationships

[TODO] Summary…

Social development in infancy and the 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.^{[1,carvajal_face?–face_2002]} They also show turn-taking skills, the ability to listen when their carer is talking and then respond with coos, gurgles or babble when their carer is quiet, at about the usual ages. They understand that eye-contact indicates that they have the attention of another adult or child from an early age. [TODO: review] This is illustrated in a videotape of a ten month old infant with Down syndrome who wants to attract the attention of a three year old in the playroom with her. The baby coos communicatively to get the older child’s attention and when the older child looks at her she changes her coo to a gurgle of pleasure in response. When the older child looks away and continues her play, the baby repeats her behaviour - makes the coos again to attract attention and gurgles with pleasure when the child looks at her again. The baby’s social behaviour clearly demonstrated the intention to communicate with the older child and an understanding of eye-contact indicating attention.

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.^[2] [TODO: 7,8,30,33,34] 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

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.^[2] This will contribute to delay in learning to understand words and it will also mean that the child continues to want to play face-to-face games for longer. In fact, research indicates that children with Down syndrome continue to be more socially cued to interact with caregivers rather than explore or play with toys for several years.[TODO: 1, 2, 7, 8]^ However, almost all children with Down syndrome do develop joint attention and pointing skills during the second year of life. The more infants with Down syndrome initiate and respond to joint attention episodes, the faster their expressive language develops. It is therefore important to encourage this behaviour.[TODO: 1]

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. [TODO: reference 41]^[3,4] Signing will help children to understand and to express themselves before they are speaking. Non-verbal communication skill is a strength for most children with Down syndrome and their non-verbal skills help to develop their expressive language skills.[^[5]]

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.^[5] Pre-school children who initiate more social play with adults have better spoken language development and are better at initiating social contact with their peers (disabled and non-disabled) years later. However, while this tendency of children with Down syndrome to initiate social games may be important in developing language and social communication skills because they increase interactions and experience of social exchanges, they may not be so helpful in formal teaching and learning situations[TODO: 2] when they may be used to avoid learning new skills.^[6–8] Parents and teachers should be aware, therefore, of both the potentially positive and negative effects of the social [TODO: review “interactivity”??] 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. A study in 2011 suggests that the play skills of 5-6 year olds are similar to children of a similar developmental age and that they benefitted from planned teacher support. This included helping children to get play started and to maintain play, as well as to understand the basic rules and structure of social play.^[9]

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 may 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’ [^{[carvajal_face?]}–face_2002][TODO: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.

Some studies indicating that older children with Down syndrome have difficulty in recognising emotions from photographs of facial expressions^[10] or from puppet faces designed to convey different emotions[TODO 45] are difficult to interpret. More studies using different methods indicate that, across the age range from 6 to 18 years, children and young people with Down syndrome have the same recognition of emotions as peers at the same developmental level. There is still the suggestion that they less often identify fear and may not have all the words to label for emotions they can recognise non-verbally.^[11–14] One possibility is that the children are not always familiar with all the labels for emotions, such as ‘surprised’, ‘happy’, ‘angry’, ‘frightened’, and ‘sad’, as there is some evidence that parents may not use these and other mental state words very often when talking with their children with Down syndrome.[76] 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 to be studied in real life situations but these studies highlight the importance of talking about emotions and labelling emotions during these early years.

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

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 test the boundaries 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 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. [TODO: reference 5]^[15,16]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.^[17] 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

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.

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 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.^[18]

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.^[19]

An example of planned support for children is provided by a group working in Barcelona, Spain.^[17] 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

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 observed 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. In some schools, children are actively 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.^[20] 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

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.^[19] 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 outside school 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,^[21] 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. [TODO: reference 5]^[15,16]

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

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 [TODO: reword “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, the author’s daughter, Roberta, 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 went on to become quite confident and independent as an adult. She consistently demonstrated 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 could be assessed by observation of her behaviour and her self-confidence, her sense of self-identity and self-esteem 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 learned appropriate behaviour by imitation of others and by experience - through observing and participating.

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

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^[22]

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.^[23]

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.