Downs syndrome and sex

References

Sex education, appropriate for the developmental level and intellectual attainment of individuals with Down syndrome, helps in engendering. Historically, sex and dating among people with Down Syndrome hasn't even been formally studied. “We don't have data on sexual activity,”. Introduction. The emotional sphere and its relationships with sexual identity and awareness of disability in a person with Down syndrome (DS).

Wood, A. () Sexuality and Relationships Education for people with Down syndrome. Down Syndrome News and Update, 4(2), doi/practice. Historically, sex and dating among people with Down Syndrome hasn't even been formally studied. “We don't have data on sexual activity,”. Introduction. The emotional sphere and its relationships with sexual identity and awareness of disability in a person with Down syndrome (DS).

As well as changes in emotions and their body, most young people with Down's syndrome will also begin to become interested in love and relationships. Wood, A. () Sexuality and Relationships Education for people with Down syndrome. Down Syndrome News and Update, 4(2), doi/practice. Sex education, appropriate for the developmental level and intellectual attainment of individuals with Down syndrome, helps in engendering.






All children and young people should be entitled to good quality sex and relationships education that will allow them to develop the qualities, attitudes, skills and knowledge to develop into healthy, happy and fulfilled adults.

Wood, A. And Syndrome News and Update4 2 This article describes why Sexuality and Relationships Education SRE as part of the school curriculum is especially important for individuals with Down syndrome and how parents and professionals can work together to ensure that it is delivered effectively.

For decades around the world, and to this day in some countries, people with Down syndrome have lived their lives in institutions, away from their families and communities, their parents told at birth that this was the best option for them. How different the outlook is today, in the light of research that has changed attitudes and determined legislation, policies and practice ensuring that people with Down syndrome have the right to education, employment, and equal access to health and social care.

However, researching this article has highlighted an injustice that could have the effect downs placing people with Syndrome syndrome back in a lonely and isolated world, not necessarily behind closed doors but potentially, in the heart of their communities. In the introduction to her book Couples with intellectual disabilities talk about living and loving, Karin Melberg Schwier describes how difficult it can be for some parents and professionals to allow children with Down syndrome to grow into adults, 'whole adults' that is, adults who have adult relationships.

In some instances, anxieties about abuse, exploitation, pregnancy and sexually transmitted infections have overtaken our appreciation that firstly, personal relationships do not always lead to sexual intercourse and secondly that the positive aspects of sexuality and affection are natural, healthy expressions of our humanity, whether or not we have an intellectual disability.

Melburg Schwier describes how our fears may become exaggerated to such an extent that we deny young people with downs the right downs grow into adults who downs able and allowed to have relationships that provide companionship, conversation, trust, sex and an appreciation of who they are. Her opening foreword makes poignant reading, as one realises that, in some cases, over-protection and a lack of opportunity to build self-esteem, personal and social skills may deny a person the right to share their life with someone else; a person who is "for themselves, not someone paid to be there, not someone who will disappear in the next wave of staff turnover, someone other than their parents and family".

As Fanstone and Katrak state in their handbook for staff "to deny that a person with a learning disability is a sexual being is to treat them less fully as a person". It is important to acknowledge that fears about the vulnerability of people with learning disabilities to sexual abuse are not unjustified see Box 1 : 'Myths and controversies'. It is, therefore, crucial to find a balance between upholding the basic human and to understand, enjoy and express one's sexuality but also to be protected from unwanted pregnancy, sexually transmitted infections, including HIV, and sexual abuse.

X These myths are socially constructed by people without Down syndrome and may serve a number of functions, e. X These beliefs may in part be true, however, there is extremely limited research in these areas; the research that exists is also downs on generations from an age when most adults with Down syndrome were living in institutions, under abnormal circumstances.

There are documented cases of men with Down syndrome who have fathered children although there are many more documented cases of women with Down syndrome who have given birth.

Downs see Melberg Schwier and Hingsburger for a review of current knowledge in this area. Sexuality relates to our understanding of what it means physically, psychologically and culturally to be male or female. It includes an awareness of our feelings, needs and desires and develops gradually across the lifespan with our changing life experiences. As we mature physically and developmentally, we will develop a range of strategies to express and syndrome these changing feelings, needs and desires.

Sexuality can be said to be an important component of our self-concept and as such, will affect our interactions with others, our behavior sex our life-style choices. As sex comes to see how our sexuality develops across time, it is easy to see that we will have differing needs for sex and relationships education at different points across the lifespan, from infancy, and childhood, adolescence and on into adulthood.

In the UK, sex and relationships education is described as a process of "life-long learning about physical, moral and emotional development. It is about the understanding of the importance of marriage for family life, stable and loving relationships, respect, love and care.

It is also about the teaching of sex, sexuality, and sexual health. Box 2 provides an overview of some of the different topics that you might expect a child to learn about over the years.

Below, we discuss the significance of these topic areas for children with Down syndrome and how parents and schools can work together to syndrome appropriate teaching and learning experiences, differentiated to the individual child's needs and his or her learning style.

These topic areas are likely to be taught both at home and at school. The ability to love and feel loved, to keep safe and know how to protect to oneself physically and emotionally stems from our self-esteem; that is our understanding and knowledge about ourselves and our sense of worth. We build this knowledge from an early age and therefore our early experiences in the home will shape our development and sex opportunities that may be open to us throughout our lives.

This means that the issues relating to personal relationships and sexuality are not constrained only to childhood and the teenage years. In fact, parents are starting to build the foundations for their child's positive transition into adult life right from the start. I am welcome here. My body is mine". As infants with Down syndrome syndrome into childhood, parents are, in fact, likely to remain the primary syndrome of information about sexuality for their children with Down syndrome, who may have fewer opportunities to observe, develop and practice social skills, and be less able to access information through written materials or through indirect means such as unstructured discussion with peers.

Some parents may fear that discussion of the body, sex and 'where babies come syndrome may encourage sexual experimentation however, research sex that in typical development, young people who have been raised in families where sex and personal relationships have been discussed as part of everyday life, in an emotionally open and honest household, are more likely to delay the onset of sexual activity and are more likely to use contraception.

The next section discusses some of the specific topic areas drawn from Box 2 in the context of teaching children with Down syndrome. These areas are likely to make up part of the child's education and school but may also be supported and activities at home. Before looking at these topic areas, however, let us briefly examine the role of formal education in delivering sex and relationships education in the UK and describe some general teaching and learning principles, which are relevant to differentiating the curriculum for pupils with Down syndrome.

In the UK, schools are legally obliged under The Learning and Skills Act to provide sex and relationships education to all pupils. They are also obliged to have an SRE policy, which is available to parents and for inspection. The guidance document aims to clarify what schools are expected to deliver by law, help staff to develop an SRE policy in liaison with parents, pupils, teachers, governors and the wider community, describe good practice in terms of teaching practice and highlight some of the sensitive issues that may raised through the delivery of SRE.

Children and young people, regardless of disability, should be entitled to sex and relationships education which:. Why is sex and relationships education particularly important for people of all ages with Down syndrome? The Standard suggests that the most effective SRE programs identify "learning outcomes, appropriate to pupils' age, ability, gender and level of maturity" based on assessment of pupils' individual needs. The program should also take account of the views of parents and caregivers and the pupils themselves.

These points are particularly salient to the provision of a differentiated program of study for pupils with Down syndrome. The DfES guidance clearly states that "mainstream schools and special schools have a duty to ensure that children with special educational needs and learning difficulties are properly included in sex and relationships education" and that "teachers may find that they have to be more explicit and plan their work in different ways in order to meet individual needs of children with special education needs or learning difficulties".

Finally, it clearly states that pupils should not be "withdrawn from health education so that they can catch up on National Curriculum subjects". Teachers and other professionals, including for example, youth workers, need to work collaboratively with parents in order to develop programs of study that suit the individual pupils needs.

As noted in the introduction, although most parents want schools to be involved in the provision of SRE, some parents of children with disabilities may be anxious about their child engaging in sex and relationships education for a variety of reasons. Professionals will need to work sensitively downs help these parents to appreciate the importance of this area of the curriculum.

Staff should use the school's SRE policy to guide them in their communication with parents about the importance of inclusion in sex and relationships education as part of the wider curriculum.

Having discussed the possible anxieties of parents with regard to tackling sex and relationships issues with their children, we should return to the point made in the introduction, that some professionals may also be anxious or indeed fearful of addressing the issues with their pupils or clients, especially when they have learning disabilities.

This implies that staff need adequate training and support in this area. Bysecondary schools will be required by the Teenage Pregnancy Strategy to have at least one member of staff who has received accredited training in PSHE.

In the meantime, local curriculum development groups made up of representatives from a number of local primary and secondary schools can be helpful sources of good practice and resources for students with learning disabilities. They also supply a comprehensive list of resources that are appropriate for teaching SRE to children and young people with learning disabilities.

Box 4 summarises a number of recommended teaching strategies for delivery of effective sex and and education to typically developing pupils. It is interesting to note that many of the techniques listed are comparable with the generally recommended strategies for differentiating any subject for a learner with Down syndrome.

This supports the idea that adapting teaching strategies to suit the needs of a pupil with Down syndrome in a mainstream class will in fact be beneficial for many of his or her fellow pupils. There are downs keys to differentiation for children with Down syndrome and these are as important for teaching about sex and relationships as any other topic area.

Firstly, it is important to ensure that the child is motivated to learn about the particular topic by carefully choosing teaching strategies that the child enjoys and which have previously been syndrome.

Making the information feel familiar and grounded in the child's experiences will be important and help the child to use sex knowledge to understand more advanced concepts. Staff could choose characters and the child's favourite books or TV programs and make downs new stories raising various issues.

For example, for a child who is using the Oxford Reading Tree syndrome, one could cut out pictures of Mum and Biff and make up a story about when Biff starts her periods using language which is suited to the child's level of comprehension but introducing some new vocabulary and ideas. With any new information taught through reading activities, it is important however, to build in activities to ensure that the child understands what he or she has read, i.

Children with Down syndrome are typically 'visual learners'; that is they learn and retain more from visual sources of information than from listening. Picture libraries available online or on CD Roms make it possible to download and print all sorts of images, which may be helpful in supporting vocabulary work; see for example Picture Yourself at www. Please note the author has not seen either of sex resources and therefore, this should not be taken as a recommendation of their quality.

Depending on the individual child, inclusion within the mainstream teaching of the subject, using one-to-one support, group-work, differentiated activities and resources will be enough, however, some children may benefit from extra one-to-one sessions, possibly from a specially qualified professional downs as a school nurse. It is also likely that themes from the agreed sex and relationships curriculum can be integrated into a variety of different subject areas.

And child will be different and will start with differing needs and prior knowledge. It is likely that staff will require additional planning time, including some time with the child's parents in order to develop a program that will meet the child's needs.

Effective liaison with parents will also mean that the parents can, if they wish, reinforce new concepts and skills at home through naturally occurring everyday situations. D'aegher et al use the term 'teachable moments' [p. Therefore it is and that parents are aware of what their child is learning about sex and relationships at school in order to discuss the issues further at home, as appropriate opportunities arise.

Having said that teaching should follow the same methods, as you would use for teaching any other information, the general principles of behavior management can be employed to shape appropriate public and private behavior and appropriate use of touch for example. Children learn through observing and imitating others and through making associations between behaviors and their consequences. This means that for children to learn socially acceptable behavior they need to see other sex acting in and socially acceptable way and they need to be rewarded for their 'good' behavior and ignored for their less acceptable behavior.

This implies that it is the other people in the child's sex world who need to carefully monitor their own behavior and responses in order to help the child to behave appropriately. If, for example, you are teaching your child about appropriate physical syndrome with other people, it is important that the child is taught how syndrome greet people in a socially acceptable way, e.

They will need to see this syndrome to them on a regular basis. Many parents comment on their frustrations as people continue to cuddle and older children and teenagers with Down syndrome, long after it would be socially acceptable to cuddle other people's typically developing children.

This type of behavior does not help the child to learn that it is inappropriate to greet people in this way. One way of doing this might be to look at body outlines for men and women and select underwear or swimwear from a catalogue to cover up different areas. This will help children to see which parts of the body are always private unless you are in a sexual relationship.

A common behavior, which can cause distress and anxiety for parents and teachers, is genital touching and masturbation. Firstly, it should be noted that genital touching is a normal phase of development for young children and is not associated with the goal-directed behavior of masturbation, where a person intentionally seeks sexual gratification. Masturbation should also be viewed as a natural behavior for both downs and females and therefore one should address the context in which masturbation occurs, i.

In order to stop a child from touching him or herself in public, one should not sex attention to the act by telling the child off, otherwise the behavior may be repeated as the child has rewarded for his or her actions through attention and verbal interaction. It may be enough to simply make sure that the child has something else to do, e.

However, the child or young person may also need some overt training about public and private behavior. They need to learn sex touching themselves is a private behavior. Family and cultural norms will prevail with regard to where this behavior is or is not appropriate, i. Once it is felt that the child understands the words public and private, these words could be used as a prompt to remind the child, should they start to touch themselves in public, e.

Social interaction including eye contact should then be withdrawn for a minute or so and then the child should be welcomed back into the interaction without referring to the behavior, e. Whatever the strategy employed, it is essential that everyone caring for and working with the child or young person uses it with consistency.

There have been at least two documented cases where the paternity of a man with Down syndrome was confirmed. It is likely that additional cases will be recognized - especially as more men have the opportunity to live in the community and develop intimate relationships. It is not known if the offspring of men with Down syndrome are more likely to have Down syndrome or other anomalies.

It does seem clear that, in general, men with Down syndrome have a significantly lower overall fertility rate than that of other men of comparable ages. An individual's status can be partially assessed by having a semen analysis done, but this may not be definitive. If a couple desires pregnancy prevention, contraception should always be used.

The onset of puberty in boys may be slightly delayed, but this is not a major factor. Genital anatomy is comparable to that of boys who do not have Down syndrome. Adult Letter of Introduction Thank you for visiting this section of our website.

Read More. William Schwab, MD. Do individuals with Down syndrome have sexual feelings? Do children with Down syndrome develop physically the same way as their peers in the general population? Do children with Down syndrome experience the emotional upheavals characteristic of adolescence?

What kind of sex education is appropriate for individuals with Down syndrome? How can healthy sexuality be encouraged for individuals with Down syndrome? Do women with Down syndrome have any special needs or concerns in regard to birth control? Are there any special needs for individuals with Down syndrome in regard to disease prevention?

How can a person with Down syndrome be protected against sexual abuse? Do girls with Down syndrome have normal menstrual periods? If a woman with Down syndrome becomes pregnant, will the baby have Down syndrome? When is the onset of menopause for women with Down syndrome? Making the information feel familiar and grounded in the child's experiences will be important and help the child to use existing knowledge to understand more advanced concepts.

Staff could choose characters from the child's favourite books or TV programs and make up new stories raising various issues. For example, for a child who is using the Oxford Reading Tree books, one could cut out pictures of Mum and Biff and make up a story about when Biff starts her periods using language which is suited to the child's level of comprehension but introducing some new vocabulary and ideas. With any new information taught through reading activities, it is important however, to build in activities to ensure that the child understands what he or she has read, i.

Children with Down syndrome are typically 'visual learners'; that is they learn and retain more from visual sources of information than from listening. Picture libraries available online or on CD Roms make it possible to download and print all sorts of images, which may be helpful in supporting vocabulary work; see for example Picture Yourself at www.

Please note the author has not seen either of these resources and therefore, this should not be taken as a recommendation of their quality. Depending on the individual child, inclusion within the mainstream teaching of the subject, using one-to-one support, group-work, differentiated activities and resources will be enough, however, some children may benefit from extra one-to-one sessions, possibly from a specially qualified professional such as a school nurse.

It is also likely that themes from the agreed sex and relationships curriculum can be integrated into a variety of different subject areas. Every child will be different and will start with differing needs and prior knowledge. It is likely that staff will require additional planning time, including some time with the child's parents in order to develop a program that will meet the child's needs. Effective liaison with parents will also mean that the parents can, if they wish, reinforce new concepts and skills at home through naturally occurring everyday situations.

D'aegher et al use the term 'teachable moments' [p. Therefore it is important that parents are aware of what their child is learning about sex and relationships at school in order to discuss the issues further at home, as appropriate opportunities arise. Having said that teaching should follow the same methods, as you would use for teaching any other information, the general principles of behavior management can be employed to shape appropriate public and private behavior and appropriate use of touch for example.

Children learn through observing and imitating others and through making associations between behaviors and their consequences. This means that for children to learn socially acceptable behavior they need to see other people acting in a socially acceptable way and they need to be rewarded for their 'good' behavior and ignored for their less acceptable behavior. This implies that it is the other people in the child's social world who need to carefully monitor their own behavior and responses in order to help the child to behave appropriately.

If, for example, you are teaching your child about appropriate physical contact with other people, it is important that the child is taught how to greet people in a socially acceptable way, e.

They will need to see this modeled to them on a regular basis. Many parents comment on their frustrations as people continue to cuddle their older children and teenagers with Down syndrome, long after it would be socially acceptable to cuddle other people's typically developing children. This type of behavior does not help the child to learn that it is inappropriate to greet people in this way.

One way of doing this might be to look at body outlines for men and women and select underwear or swimwear from a catalogue to cover up different areas.

This will help children to see which parts of the body are always private unless you are in a sexual relationship. A common behavior, which can cause distress and anxiety for parents and teachers, is genital touching and masturbation.

Firstly, it should be noted that genital touching is a normal phase of development for young children and is not associated with the goal-directed behavior of masturbation, where a person intentionally seeks sexual gratification. Masturbation should also be viewed as a natural behavior for both males and females and therefore one should address the context in which masturbation occurs, i.

In order to stop a child from touching him or herself in public, one should not draw attention to the act by telling the child off, otherwise the behavior may be repeated as the child has rewarded for his or her actions through attention and verbal interaction.

It may be enough to simply make sure that the child has something else to do, e. However, the child or young person may also need some overt training about public and private behavior. They need to learn that touching themselves is a private behavior. Family and cultural norms will prevail with regard to where this behavior is or is not appropriate, i.

Once it is felt that the child understands the words public and private, these words could be used as a prompt to remind the child, should they start to touch themselves in public, e. Social interaction including eye contact should then be withdrawn for a minute or so and then the child should be welcomed back into the interaction without referring to the behavior, e. Whatever the strategy employed, it is essential that everyone caring for and working with the child or young person uses it with consistency.

Teaching methods such as the use of social stories may be helpful for training in many areas. This technique involves regular reading of personal books with illustrations or photographs to teach children about all sorts of social situations and the associated socially acceptable behaviors. Social stories may provide a useful way of teaching children and young people with Down syndrome about a variety of aspects included in sex and relationships education, e.

In terms of using the books to change behavior, the story should introduce the behavior and then outline the social outcomes for the child if they show socially acceptable behavior. Please see www. It may also be useful to support the bookwork with activities such as encouraging the child to act out the story with dolls or puppets or for older children to make a photo-story using pictures of characters from soap operas cut from magazines.

Older children may enjoy role-playing situations that have been introduced in this way. It is important to note that children with Down syndrome are particularly perceptive to non-verbal social cues and emotional tone. Therefore, the way in which certain situations and questions are responded to is very important in shaping the child's attitudes.

For example, talking openly about body parts and using accurate language that is suited to the child's level of comprehension will help the child to understand more about their own body and therefore prepare them better to understand body changes at puberty.

Parents should aim to foster an atmosphere in the family of openness, acceptance and respect whereby children's questions will be valued and answered. Also, modeling appropriate public and private behavior will be helpful. Children with Down syndrome are excellent social learners, that is, they learn well from observation and imitation. This means concepts such as privacy can be taught through modeling, e. Children with Down syndrome experience the most significant delays in the area of speech and language, with speech production commonly lagging behind language comprehension.

They are likely to need focused teaching work to help them develop a vocabulary for thinking about emotions and their bodies. Just as you would teach the names of other parts of the body, it is important to teach the 'correct' terms for male and female genitals.

This is important for several reasons. Openly talking about and naming these body parts will help children develop further awareness and a sense of ownership, pride and respect for their bodies and those of other people. Having a label for each part of the body, including the genitals, shows the child that they are permitted to discuss them when necessary and gives them a language with which to do so and with which they will be understood. The age at which it is appropriate to introduce this vocabulary will depend on the individual's progress in developing his or her receptive vocabulary.

For example teaching the words 'vulva' or 'penis' will not be appropriate for example, if the child cannot yet identify his or her shoulder or knee. These new words can be taught as you would teach any other new vocabulary, i. You could try putting printed word cards with the names of a wide variety of body parts into a bag and asking the child to pick one at a time and stick them onto cut-out pictures of men and women, to show that he or she understands which body parts are the same for men and women and which parts are different.

For children who have made good use of signs to support their vocabulary development, it is possible to acquire PSHE curriculum-specific signs from organisations such as The Makaton Vocabulary Development Project see www. Teenage boys and girls with Down syndrome experience the physical and emotional changes of puberty at approximately the same age as their typically developing peers.

However, for some families this can be a difficult time, leading to changes in the individual's behavior and the possibility of more severe adjustment difficulties, which can be stressful to the family. Advance preparation generally helps to take some of the stress out of most things and adolescence is no exception! According to to Couwenhoven, this is partly due to cultural stigma and sex shaming that affects the general population as a whole. Couwenhoven partially attributes much of the lack of information about sexuality in people with Down Syndrome to common misconceptions that individuals with the condition are sterile, incapable of, and uninterested in sex.

A lack of open and frank communication regarding sexual health can also lead to disparities in access to gynecological healthcare. Specialized sex education resources for people with Down Syndrome are increasingly in demand, Couwenhoven explains, but can be incredibly difficult for individuals and their caregivers to access.

The presence of caregivers is—in many cases—an obstacle itself, and parental anxiety can be a huge barrier to learning about sex and dating.