The Changing Sexual Lives of Young People with Learning Disabilities

1. The Changing Sexual Lives of Young People with Learning Disabilities Jaycee Pownall Academic Unit for Mental Health and Wellbeing University of Glasgow

2. What is Sexual Health? “Sexual health is a state of physical, emotional, mental & social well-being in relation to sexuality; it is not merely the absence of disease, dysfunction or infirmity. Sexual health requires a positive & respectful approach to sexuality & sexual relationships, as well as the possibility of having pleasurable & safe sexual experiences, free of coercion, discrimination & violence. For sexual health to be attained & maintained, the sexual rights of all persons must be respected, protected & fulfilled” World Health Organisation Department of Reproductive Health & Research

3. Sexual Health & People with Learning Disabilities In the past people with learning disabilities were not viewed as having a right to sexuality compared to others in society – ‘Eternal Children’ or ‘Potentially Dangerous’ (McCarthy, 1999) Sexuality is still perceived to be a ‘private’ issue (Shakespeare, 2000) Lower levels of knowledge, less sexual experience, more negative attitudes, high levels of unmet needs, strong desires to know more, lack of autonomy and knowledge of how to access information (Cheng & Udry, 2003; McCabe, 1999; McGillivray, 1999; Morrison, 2006; Szolios & McCabe, 1995)

4. Barriers to Sexual Development & Expression Young people with learning disabilities (LD) can be confronted with many barriers to their sexual development and expression • Young people with learning disabilities experience difficulties in grasping key health-related concepts • Opportunities to learn about sex may be fewer • Negative or obstructive attitudes from others • Having fewer opportunities to socialise with friends and develop friendships or intimate relationships • Having fewer sources for sexuality-related information • Remain closely supervised by family/carers • Being protected by parents, often from concerns over abuse (Ailey et al., 2003; Almack, Clegg, & Murphy, 2009; Cole and Cole, 1993; McCabe, 1999; Stalker, 2002)

5. Aims of the Research • To explore the perspectives of young people with LD & their non-disabled peers in relation to their sexual knowledge, attitudes and experiences • 30 with an learning disability, 30 with no disability • Aged 16 - 21 • Questionnaires and in-depth interviews • Understandings and misunderstandings (social rules, physical changes and puberty, reproduction, contraception and STIs) • Sources of sexual health information • Opportunities to develop friendships and more intimate relationships (their social networks) • Young people’s thoughts and feelings about sexuality, e.g. their worries and anxieties, what they wanted to know more about

6. Results: Sexual Knowledge • Scores could range from 0 – 133 • The independent t-test was used to explore differences when data was normally distributed; the Kruskal- Wallis test was used for data that was not normally distributed. All p < 0.001

7. Sexual Knowledge cont.

8. Sexual Knowledge & Physical Disability (Source: Pownall, 2010)

9. Lack of Knowledge & Negative Feelings about Sex “At first it made me feel sick and then I thought we will have to do it when we are older” (Female, aged 16) “It worries me when I hear about….when I hear about the names of the diseases like a boy or a girl could have it kind of scares me a bit” (Female, aged 18) “Getting infections… like you're not wanting to do it” (Female, aged 16) “It gets scary when you talk about all the diseases we can get off of women, that they might be falling in front of you and you do it and in the morning you think you’ve got the disease they’ve already had”(Male, aged 17)

10. Sources of Information Where did young people get their information from? H.P. H.P. Family School/College School/College Friends Family Media Media Friends Learning Disability No Disability

11. Sources of Information Talking to Friends and Family H.P. Family 27% H.P. School/College School/College Friend 37% Family 67% Media Media Friends 87% Learning Disability No Disability

12. Sources of Information Talking to Health Professionals H.P. 17% H.P. 77% Family School/College School/College Friends Family Media Media Friends Learning Disability No Disability

13. Sources of Information Television, Films and the Internet H.P. H.P. Family School/College School/College Friends Family Media Media Friends Learning Disability No Disability

14. Sources of Information Where did young people get their information from? H.P. H.P. Family School/College School/College Friends Family Media Media Friends Learning Disability No Disability

15. Social Networks

16. The Importance of Having Friends Young people with learning disabilities frequently discussed feeling lonely and isolated P: I get lonely sometimes, in the summer (male, aged 17) P: Eh well they [friends] stay too far away from me so I don’t really [see them]… I: How do you feel about that? P: Kinda fed up because I’ve got nothing to do…I just stay in mostly and go on the computer (male, aged 17) I: Do they [parents] let you do your own thing? P: Erm no, not most of the time…well if I want to do something they'll have to come with me ‘cos they are awful protective of me I: How does that make you feel? P: Ok, because they love me, but annoyed, ‘cos I want to go out sometimes, do stuff (female, aged 19)

17. [Not] Talking to Family & Friends Talking to Parents I’d be too embarrassed to talk to her…She probably would be worried but I think she knows I’m not interested in any of that the now so (female, aged 18) P: I would be embarrassed if I said it to them I: How would they would feel about talking to you about sex? P: Probably upset…well my mum would get upset…because she’d probably start crying or something(male, aged 19) Talking to Friends You might, you might feel a bit embarrassed talking to your friends about it as they might start laughing at you and making fun of you (male, aged 20) Feelings of Guilt & Shame You might get you into trouble, if you get caught [looking on the internet] (male, aged 18)

18. Key Messages from the Research • Young people with learning disabilities were less knowledgeable about sexual matters. This was not simply about ability • They reported having much smaller social networks, and fewer sources of sexual information than the non-disabled peers • The young people with learning disabilities expressed a large number of misunderstandings about sexuality and sexual health. This was linked to feelings of vulnerability and distress • Young people felt embarrassed about seeking sexual information and held negative views about sexual intercourse • Relying more on family did not mean that they felt that they could speak to their families, nor did they feel confident raising this subject with health professional • Young people with learning disabilities expected that their parents would react negatively toward them asking questions about sex and developing sexual interests

19. Implications of Research Findings • The risk of sexuality remaining a ‘private’ issue that can not be talked about openly is that it takes on negative connotations and is seen as being ‘dirty’ or ‘taboo’, associated with embarrassment and shame • Provide young people with clear, concise information about sex and relationships Working with schools and colleges • Many of the young people felt that their sex education classes failed to address their questions: “Like um spending more time with your partner and all that, just a bit how, perhaps people tell you a bit more about how relationships work and stuff” (female, aged 21) Working with Health professionals • GPs and other professionals should be proactive about discussing sexual matters with young people, as embarrassment or fear of negative responses may prevent them from seeking the information • This may also reflect poor awareness of the services available to them

20. Mothers’ Perspectives (Pownall et al., in press) Working with Parents • Being in a more dependent ‘child-like’ role is likely to make it more difficult for the young person to have the confidence to ask questions or raise concerns about sexual matters • Mothers tended to take a reactive approach, responding to their offspring’s questions, not initiating discussions • Mothers lacked information and there was lack of support available to parents to help them address their children’s sexual needs • Educationalists, medical practitioners and those providing social care also need to be more aware not merely of the need to support young people themselves with regard to their developing sexuality, but to be proactive about talking with families, who may also find this an embarrassing and sensitive issue to raise with professionals. • Parental concern with their daughters’ potential vulnerability may result in them being more sheltered • A lack of knowledge is likely to make the young people more, rather than less vulnerable

21. Research Team Dr Jaycee Pownall Professor Andrew Jahoda Academic Unit for Mental Health and Wellbeing University of Glasgow Jaycee.Pownall@glasgow.ac.uk http://www.gla.ac.uk/departments/mentalhealthandwellbeing/

22. References • Ailey, S.H., Marks, B.A., Crisp, C., & Hahn, J.E (2003). Promoting Sexuality across the Life Span for Individuals with Intellectual and Developmental Disabilities. Nursing Clinics of North America, 38, 229-252. • Almack, K., Clegg, J. & Murphy, E. (2009). Parental Negotiations of the Moral Terrain of Risk in Relation to Young People with Intellectual Disabilities. Journal of Community & Applied Social Psychology, 19, 286-299. • Beail, N. & Warden, S. (1995). Sexual abuse of adults with learning disabilities. Journal of Intellectual Disability Research, 39, 382–387. • Cheng, M. M. & Udry, J. R. (2003) How much do mentally disabled adolescents know about sex and birth control? Adolescent & Family Health, 3, 28-38. • Cole, S. S. & Cole, T. M. (1993) Sexuality, disability, and reproductive issues through the lifespan. Sexuality & Disability, 11, 189-205. • McCabe, M. P. (1999) Sexual Knowledge, Experience and Feelings Among People with Disability. Sexuality & Disability, 17, 157-170. • McCarthy, M. (1999) Sexuality and Women with Learning Disabilities. London: Jessica Kingsley Publishers. • McGillivray, J. A. (1999) Level of knowledge and risk of contracting HIV/AIDS amongst young adults with mild/moderate intellectual disability. Journal of Applied Research in Intellectual Disabilities, 12, 113-126. • Morrison, C. (2006). Draft Report: People Should Tell You Stuff. A report from the TASC Agency on a consultation finding out more about what young people with a learning disability need when it comes to sexual health services, NHS Health Scotland. • Pownall, J.D. (2010). Health Knowledge and Expected Outcomes of Risky Behaviour: A Comparative Study of Non-Disabled Adolescents and Young People with Intellectual and Physical Disabilities. Unpublished PhD thesis, University of Glasgow. • Pownall, J.D., Jahoda, A., Hastings, R. & Kerr, L. (in press) Sexual Understanding and Development of Young People with Intellectual Disabilities: Mothers’ Perspectives. American Journal on Intellectual and Developmental Disabilities. • Shakespeare, T. (2000) Disabled Sexuality: Toward Rights and Recognition. Sexuality & Disability, 18,159-166. • Stalker, K. (2002). Young Disabled People Moving into Adulthood in Scotland. York, Joseph Rowntree Foundation. • Szollos, A. A. & McCabe, M. P. (1995) The sexuality of people with mild intellectual disability: Perceptions of clients and caregivers. Australia & New Zealand Journal of Developmental Disabilities, 20, 205-222. • World Health Organization Department of Reproductive Health and Research http://www.who.int