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Potential stress factors faced by adolescents with Down’s syndrome 

Background

Current figures indicate that around one in every 1000 babies born in the UK will have Down’s syndrome (DS) and that there are 60,000 people in the UK with the condition. Due to improvements in healthcare, the average life expectancy for a person with DS in Britain is between 50 and 60.1 As a result of this, new life opportunities available to young people with DS now present them with potentially more demanding life events such as leaving school and college, experiencing their siblings moving out of the family home, and losing their parents.2

Adolescence

There are many challenges which young people face during adolescence, such as developmental tasks which include identity formation, changes in school from primary to secondary, and physical changes which happen during puberty.3 Typical stressors that young people face include self-esteem issues, appearance , dating and sexual relationships, personal health, school grades, employment, work and educational plans.4 Adolescence presents many stressful challenges to the developing person.5 Young people with DS face these challenges with restricted cognitive ability.6

Indentity Information

One of the central tasks of adolescence is to achieve a sense of personal identity.7 Identity formation for individuals with DS can be complicated as young people are not always given the opportunity to discuss the fact that they have DS. 8 This may be because parents/carers are trying to protect the young person or because they think that they would not understand.9 This is an issue which most parent/carers will face, as adolescence is a time when differences become more noticeable when others date, learn to drive, go to college, and have careers. Many families find support and acceptance by joining parent organisations where they meet families who have children or adults with DS, and this helps them to promote positive attitudes. Though awareness of difference or disability in a person may result in anger, loss or sadness, in research on 77 young people with DS there was little evidence of negative reaction in the young people that knew that they had the syndrome. Parents’ fears of long-term negative consequences appeared to be unfounded. All of the young people in the research had high self-esteem, and awareness of DS and disability did not appear to be a major issue. 9

Puberty

Puberty involves significant changes in growth and development which can be bewildering for a teenager with DS. Puberty for a teenager with DS is similar to puberty in the general population. Almost all young women ovulate and most female teenagers have regular periods. 10 Gynaecological concerns and problems for young women with DS are similar to those experienced by young women without DS. Whilst the onset of periods can cause distress in some families, others take it in their stride. Girls who have been prepared appear to find the process less difficult and some young females look forward to becoming a woman. 11 It is important that parents and carers provide adolescents with DS with information regarding physical changes before they occur. 12 There are leaflets available on the subject of menstruation, which can help. 13,14

The development of male sexual characteristics is similar to that of their peers. There are still many unanswered questions regarding male fertility and there are only a few reported cases of males with DS fathering children, however, this may be due to lack of opportunity rather than for physical reasons. 15

Sexual Relationships

The social, sexual needs of young people with DS are more similar to peers than different. Young people with DS show the same needs as their peers for belonging and intimacy 12 and many young people want to marry.16,17 As individuals with DS can now take their place in work and social environments, it is to be expected that some people will assume sexual roles which the general population take for granted; such as lover, spouse, and parent. However, people with DS may experience societal prejudice and anxiety from parents and carers if they do. 16 Whilst it is normal for a typical adolescent to enjoy a social life in which they pair-off and date, young people with DS may experience a socially segregated environment. Dealing with social, sexual training is necessary for young people with DS.12 It is important that young people with DS receive sex education lessons. Many young people with DS will be able to take these classes in mainstream education. There are many resources available to help. 18,19

Health

The severity of DS can vary from person to person and whilst some people with DS will experience few health problems, others will be severely affected and will require extra medical care and attention. 20 Frequent health issues which individuals with DS may experience include heart disease, hearing loss, problems with vision, low bone density, gum disease, and obesity.21 Dental problems, ear infections, bladder problems, and arthritis are common causes of pain in people with DS. Pain can affect mental health; chronic pain can lead to depression and agitated behaviour. Young people with symptoms may be frightened if they cannot understand what is happening to them or cannot discuss it. Careful attention to potential physical or medical conditions ensures that physical and medical conditions are addressed, which can reduce discomfort and improve psychological conditions. 22

Body Image

Children with DS are likely to reach adolescence short and overweight before they experience the teenage ‘growth spurt.’ This may create psychological issues as well as physical problems for young people, as obesity still evokes a social stigma. 23 People who are visibly overweight are targets of stares, rude remarks, discrimination and ridicule. 24 Exercise and nutrition-based interventions are important in preventing and reducing excess weight. People with DS may have health problems which make exercise difficult, these must be addressed before starting any exercise.25 Leaflets are available to assist people with DS with diet, weight and exercise.26 However young people with DS are very aware of the feelings of others and appear less self-conscious than their peers.22

School

There are many issues around school which have the potential to create stress for young people with DS. Statutory guidance on inclusive schooling for children with special educational needs 27 suggests that ‘nearly all children with SEN can be successfully included in mainstream education’. There are gains in communication, expressive language and literacy skills for young people in mainstream education, but disadvantages in social inclusion have been reported. Included young people seem less likely to have special friends, boyfriends or girlfriends and a social life of their own. 28 Friendship for young people with DS and other learning disabilities (LD) may stop at the end of the school day. Extending circles of friends into the community has been successful in overcoming this problem and having friends with and without disabilities adds richness to life. 22,29

However, research into the impact of inclusion on the emotional well-being, and personal and social development of young people with LD found that the majority of young people with LD were in favour of it. The young people talked about some issues which worried them; safety and transitions were named as two issues that worried the young people and created stress. 30

Saftey

The young people said that the times between lessons could be stressful for them as there were a lot of people moving around at the same time, corridors and stairways were crowded and noisy, and they felt that they might be rushed or pushed. They felt frightened on the stairs and were worried or anxious that they might be teased, picked on or bullied in the common rooms or social areas. Young people asked for designated ‘safe places’, sources of support or supervised activities that they could access during these stressful parts of the school or college day. They felt that if they could go into a library, a social area or somewhere that was actively staffed and developed for them, things would be better. Current guidance suggests that schools should provide quiet or ‘safe places’, sources of support and activities such as lunchtime clubs for children who have a greater risk of being bullied. 31

Bullying

Bullying is a real fear for children with learning disabilities. Figures show that eight out of ten children with learning disabilities are bullied. 32

Advice to combat bullying states that parents/carers should make sure their children know that it is safe to let someone know that they are being bullied. Teachers should be contacted and young people encouraged to keep telling. Factsheets are available, which look at ways to prevent bullying happening or to stop it once it is happening. 33

Transition between schools

Transitions between schools worry young people with LD who want to be more effectively involved in planning school-based transitions, and exit pathways from college. Young people are nervous and anxious around change; for example, the time of transition from one school to another, or from school to college. They say that they are nervous before the move and nervous after, but not knowing or not being told about the change is the biggest worry. Young people who are given the opportunity to visit the new class, school or college before the change and are able to find out all about the differences between the old place and the new place for themselves, are happier. Buddy systems also help young people with LD when they are new to school or college. 30

Transition to work or college

The experiences of 145 young people with LD during their transition from school to work or college were investigated. 34 The research found that a third of the young people interviewed during their final year at school wanted to progress to paid employment, however, six months after leaving school only 17% had achieved their ambition and were in paid employment; 60% of the young people had gone into college, 5.5% were in unpaid or voluntary positions, 11% were at home with no placement, and 2% were attending day centres. College was the more common option discussed at transition planning and the option that was promoted by schools and career services.

Employment

Employment is an opportunity which has been denied to people with LD for a long time. However, the government now views access to employment as a rights issue and includes fair access to employment in The Disability Discrimination Act. 34 Less than one in five adults with DS is in paid employment; two thirds of those that are not employed want to secure employment. 35 Preparation at school or college for work and work experience are important factors in helping people with LD find employment. 32

Stress

There are many challenges facing young people during adolescence, which have the potential to create stress. Young people with DS have stress in their lives, can feel it and perceive it. 22 Stress in adolescence can create health problems and has been linked to mental health issues such as conduct disorders, eating disorders, and depression. 36 Increasing awareness of being different, lack of acceptance by school peers and sudden change or loss in personal relationships are common occurrences which may precede the onset of mood disorders in young people with DS. 37 Behavioural problems, and mood disorders such as depression, are common in adults with DS.

However, the presence of stress in someone’s life does not usually trigger a mental illness. It is important to recognise the signs and to develop strategies to deal with stress, such as appropriate support, removing the person from the situation, and participation in activities that reduce stress. 22

People with DS are more likely to use certain coping strategies. For example, it is common for people with DS to use routine, order and sameness as a way of rationalising and controlling their lives. People with DS often find it difficult to talk clearly and to express their thoughts and feelings and many people engage in self-talk. Indications are that self-talk is similar to the normal coping mechanisms of children. 38 Self-talk can be adaptive as it helps the individual review their experiences, make plans, experiment with alternatives, express feelings that they would otherwise be unable to express, and entertain themselves. If it dramatically changes in tone or in how often it occurs, it may signal a psychological problem such as anxiety, depression, physical pain or some type of illness. It is best not to discourage or stop self-talk but to make it socially acceptable. 8

Young people with DS may experience as much stress or more than somebody else but have fewer resources to deal with it. There are many strategies which can help them to manage their stress. It must be acknowledged that it is possible (and probable) that they will have stresses in their lives. Their concerns must be listened to, and ways of helping them cope with the stress must be devised. 22

Useful organisations

Down’s Syndrome Association
A charity formed to support those with down syndrome and their families by providing information and research. Tel: 0845 230 0372 Website: www.downs-syndrome.org.uk  

Down Education International (Downsed)
Undertake research and provide practical support and information to improve the lives of those with Down’s syndrome. Tel: 02392 855 330 Website: www.downsed.org  

Down’s Heart Group
A charity that offers support and information about heart conditions that are associated with Down’s syndrome. Tel: 0844 288 4800 Website: www.dhg.org.uk  

Down Syndrome Research Foundation UK
A national Down’s syndrome Research Charity. Tel: 01494 521826 Website: www.dsrf-uk.org  

Down Syndrome Education International
An international charity dedicated to developmental and educational research to improve outcomes for those with Down’s syndrome. Tel: 023 9285 5330 Web: www.downsed.org  

References

1 Down’s Syndrome Association. (2009). Available from: http://www.downs-syndrome.org.uk/news-and-media/key-facts.html

2 Jobling, A., Moni, K., & Nolan, A. (2000). Understanding friendship: Young adults with Down syndrome exploring relationships. Journal of Intellectual & Developmental Disability. 25 (3), 235-245

3 Mcnamara, S. (2000). Stress in Young People what’s new and what can we do? London: Continuum

4 Frydenberg, E. (1997). Adolescent coping: Theoretical and Research Perspectives. London: Routledge

5 Durkin, K. (2003). Developmental Social Psychology from infancy to old age. Oxford: Blackwell Publishing

6 Kingsley, E., & Kingsley, C. (2002). Introduction. In M Pueschel and M Sustrova (Editors). Adolescents with Down Syndrome Toward a more fulfilling life. (pp 1-5) London: Brookes.

7 Erikson, E. (1968). Identity :Youth and crisis. London: W Norton and Company

8 McGuire, D., & Chicoine, B. (2002) Life Issues of Adolescents and Adults with Down Syndrome In W Cohen, L Nadel, & M Madnick (Editors). Down syndrome: Visions for the 21st Century. (pp 221-236) New York Wiley Blackwell

9 Cunningham, C., Glenn, S. & Fitzpatrick, H. (2000). Parents telling their offspring about Down Syndrome and Disability. Journal of Applied Research in Intellectual Disabilities. 13, 47-61

10 Pueschel, S. M. (2002). Adolescent Development and Sexual Maturation. In Adolescents with Down Syndrome: Toward a More Fulfilling Life. Ed S.M.& M. Sustrova, pp35-38. London: Paul Brooks Publishing Co

11 Mason, L., & Cunningham, C. (2006). Final Report PMS In Women with Down Syndrome. Available from:http://www.downs-syndrome.org.uk/images/stories/DSA-documents/research/pms_report.pdf

12 Edwards, J.P. (2002). Growing into a Social Sexual Being In M Pueschel and M Sustrova (Editors). Adolescents with Down Syndrome: Toward a more fulfilling life. (pp 59-69) London: Brookes

13 Down’s syndrome Scotland (2010) Let’s Talk About Periods A booklet about growing up for girls who have a learning disability. Available from http://www.dsscotland.org.uk/resources/

14 Down Syndrome NSW (1999) Talk to me –a guide for mothers and daughters with Down Syndrome. Available from: http://www.dsansw.org.au/index.php?pg=261

15 Down’s Syndrome association. Adolescence and Sexuality. Available from: http://www.downs-syndrome.org.uk/component/content/article/27-education/407-adolescence-and-sexuality.html

16 Brown, R. (1996). Partnership and marriage in Down Syndrome. Down Syndrome research and Practice. 4 (3), 96-99

17 Kingsly, J., & Levitz, M. (2007) Count us in: Growing up with Down Syndrome. New York: Harcourt

18 Down’s syndrome Scotland. (2010). Let’s Talk About Puberty. Available from: http://www.dsscotland.org.uk/resources/

19 Couwenhoven, T. (2007). Teaching children about their bodies,boundaries and sexuality: A guide for parents and professionals.USA:Woodbine House

20 NHS Choices. (2008). Down’s Syndrome. Available from: http://www.nhs.uk/Conditions/Downs-syndrome/Pages/Causes.aspx17

21 Roizen N., & Patterson, D. (2003). Down’s syndrome The Lancet , 361,1281-89

22 McGuire,D.,& Chicoine,B. (2006). Mental Wellness in Adults with Down Syndrome. USA: Woodbine House

23 Pueschel, S.M. (1988). The Young Person with Down syndrome Transition from adolescence to adulthood. London: Paul Brookes Publishing

24 Myers, A., & Rothbulum, E.D. (2004). Coping with prejudice and discrimination based on weight In J.L.Chin The Psychology of Prejudice and Discrimination (pp-111-134). London: Praeger

25 Murray,J & Ryan-Krause,P. (2010). Obesity in Children with Down Syndrome: Background and Recommendations for Management. Pediatric Nursing. 36 (6),314-319

26 Down’s syndrome Scotland. (2010). Diet, weight and Exercise. Available from: http://www.dsscotland.org.uk/resources/

27 DfES (Department for Education and Skills) (2001a) Inclusive Schooling – children with special educational needs. London: DfES

28 Buckley, S., Bird., G, Sacks, B., & Archer, T. (2006) A comparison of mainstream and special education for teenagers with Down syndrome: Implications for parents and teachers. Down syndrome Research and Practice. 9(3), 54-67

29 D’Haem, J. (2008). Special at school but lonely at home: an alternative friendship group for adolescents with Down Syndrome. Down syndrome research and practice. 12(2), 107-111

30 Foundation for People with Learning Disabilities. (2007). What about us?. Available from http://www. learningdisabilities.org.uk/our-work/children-and-young-people/what-about-us/key-findings/?locale=en

31 DCSF (Department for Children, Schools and Families) (2008) Safe to Learn: embedding anti-bullying work in schools – bullying involving children with special educational needs. London: DCSF

32 Mencap. (2007). Disablist bullying is wrecking children’s lives says Mencap. Available from: http://www. mencap.org.uk/news.asp?id=2355Mencap

33 Mencap.(2007) Bullying and children with a learning disability. Available from: http://www.mencap.org. uk/document.asp?id=12733

34 Beyer, S. , Kaehne, A. Grey, J., Sheppard, K., & Meek, A. (2008). What Works?-transition to employment for young people with learning disabilities (Brochure). Cardiff: Shaw Trust

35 Down’s Syndrome Associatio (2007) Adults with Down’s syndrome still facing barriers to employment. Available from: http://www.downs-syndrome.org.uk/news-and-media/campaigns/employment.html

36 Peterson,A.,Compas, B., Brooks-Gunn,J, Stemmler,M.,Sydney,E. & Grant,K. (1993)Depression in adolescence. American Psychologist .48/2, 155-168

37 Capone, G., Goyal, P., Ares, W., & Lannigan, E. (2006). Neurobehavioural Disorders in Children, Adolescents, and Young Adults with Down Syndrome. American Journal of Medical Genetics .142C, 58- 172

38 Patti,P. Anorilo,N &Gavin,M. (2008). Parent/carer ratings of self-talk behaviour in children and adults with Down Syndrome in Canada and The United Kingdom. Available from: http://www.down-syndrome.org/ reports/2063/?page=

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Page last updated: 16/12/2011 13:19 
 
 
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