Young people’s sexuality is a vital part of their identities and central to their wellbeing. Fortunately, there is a growing awareness that it is important to support people with learning disabilities to have fulfilling friendships and more intimate relationships (Ailey et al. 2003). This makes it surprising that there has been little research on the views of young people with learning disabilities themselves about their developing sexuality and their understanding of sexual matters.
Much of young people’s sexual development occurs through experience and experimentation. As a private matter, talking about sex with friends is also an important way that young people can exchange knowledge and discuss areas of concern and confusion. However, the situation is very different for people with learning disabilities who are often socially marginalised and do not have the same opportunities to develop private lives, spending a lot of their time under the supervision of adults (Cole and Cole 1993). Thus, social exclusion and limited life choices need to be taken into account when considering the limited sexual knowledge of people with learning disabilities.
Having fewer friends means that families will be likely to play a more central role in supporting the sexual development of young people with learning disability. Although parents’ attitudes are becoming more supportive and accepting of their offspring’s sexuality (Cuskelly and Bryde 2004, Karellou 2003), parents may still find this aspect of their child’s development difficult to deal with (Cheng and Udry 2003). Concerns about their offspring’s (particularly young women’s) vulnerability to abuse are often expressed by parents at the same time as a wish for their offspring to enjoy more ordinary lives. This can create a daily tension for parents in dealing with sexuality matters. Little is known about the support that parents want from schools or health and social services to help them communicate effectively to their offspring about this sensitive and private matter.
We have been carrying out a programme of research to explore young people’s sexual understanding and development (funded by the Bailey Thomas Charitable Trust), and the views of mothers about supporting their offspring’s sexual development (funded by the UK Economic and Social Research Council).
Young people’s sexual health knowledge
We spoke to thirty young people with learning disabilities, aged between 16 to 21 years of age, and thirty similarly aged young people with no disability. The two groups were both recruited from further education colleges. They came from similar social backgrounds and lived in their family homes. Participants were asked about their: i) sexual knowledge and understanding, ii) sources of information, and iii) the nature of their social networks. More in-depth interviews were also carried out with a sub-sample of six men and six women with learning disabilities to explore the emotional impact of their sexual development.
As expected, those with a learning disability were less knowledgeable than their non-disabled peers about sexual matters and they held a large number of misunderstandings about sexuality and sexual health. Being confused about sexual matters was a source of anxiety and distress for the young people.
The young people with learning disabilities reported having much smaller social networks and fewer sources of sexual information than their non-disabled peers. A lack of friends not only limited participants’ access to informal sources of information, as well as those with who they could form relationships, including potential sexual partners. The interviews showed that the participants with learning disabilities keenly felt their lack of friends and opportunities for developing more intimate relationships.
Despite being more reliant on family for support, those with learning disabilities were actually less likely to report speaking to family members about sexual matters than the non-disabled group. Data from the interviews showed that young people frequently anticipated negative reactions from friends and family about discussing sex. Anticipating these negative reactions may also have had an impact on the young people’s willingness to access information from other sources. Only a small minority of those with learning disabilities reported having accessed information from their general practitioner or a specialist clinic.
Several young people also mentioned feelings of guilt and shame if they were found trying to access information from magazines or the internet. Having an array of sources for sexual health information is important, as it helps adolescents to sort through the sometimes highly confusing and contradictory messages that they may receive. Without this range of sources, young people with learning disabilities were more reliant on informal sources of information such as television and films, which are likely to provide an unrealistic view of relationships and sexuality (Valenti-Hein and Choinski 2007). Although schools and colleges appeared to play an important role, many of the young people wanted sex education classes to start with broader social issues, such as how to begin a relationship in the first place.
Mothers’ views about their offspring’s developing sexuality (Pownall et al, in press): We also talked to mothers about their experiences, attitudes and behaviour in relation to supporting the developing sexuality of their offspring with learning disabilities, aged between 16 – 21 years of age. The study took the following two approaches to finding out mothers’ views: Within families: In-depth interviews were carried out with eight mothers who had a child with a learning disability and a similarly aged sibling of the same gender. This made it possible to identify the particular challenges mothers faced in supporting their offspring with learning disabilities and sometimes with their siblings too! Between-families: We also compared the experiences of 30 mothers with a son or daughter with learning disabilities with 30 mothers who had a child in the same age group and no offspring with a learning disability in the family.
The mothers of young people with learning disabilities found it more difficult to talk to them about sexual matters and tended to believe that their offspring were not as interested in developing sexual relationships and had fewer sexual feelings than other adolescents. The wider context for these views was the mothers’ awareness that their offspring with learning disabilities did not have the same network of friends, or the opportunities to develop more intimate relationships as their siblings or non-disabled peers. For many it meant there was less urgency to talk about their offspring’s sexuality. The between-family comparison showed that mothers of young people with learning disabilities had spoken about fewer sexual topics with their offspring, began such discussions at a later age and, when discussions did occur, these tended to be in less depth than for the other group.
From the in-depth interviews, it was apparent that the growing independence of the siblings forced their mothers to speak to them about sexual matters. In fact, not knowing what the siblings were doing when they were out sometimes caused most concern for the mothers than anything to do with the sexuality of their offspring with learning disability. This also led to differences in what the mother said they talked about with their offspring with learning disabilities and their siblings. While they tended to talk to their siblings about how to stay safe as sexually active young people, the focus with their offspring with learning disabilities tended to be on appropriate and inappropriate sexual behaviour.
It was interesting to note that there were gender differences in mothers’ views about their children’s developing sexuality. There was a particular emphasis on protection of daughters, and anxiety about the risk of pregnancy. Thus, it was not surprising then that overall mothers of daughters tended to report they had spoken more about sexuality and relationships than mothers of sons. What was surprising is that, despite expressing greater fears about their daughters’ vulnerability, these gender differences were less marked for mothers of young people with learning disabilities. One possible interpretation is that parental concern with these young women’s potential vulnerability resulted in them being more sheltered. This fits with data from the study with the young people themselves, that young women with learning disabilities were less knowledgeable about sexual matters than men—a contrast with the pattern found for their non-disabled peers.
When they did talk to their offspring about sex, most mothers tended to adopt a reactive mode, answering questions when asked or using a topic of shared interest, such as situation arising in a television programme they were both watching. Both the survey and interview data indicated that the young people without disabilities asked more questions about sex, with mother and child sharing their ideas and values. This mutuality when dealing with this intensely private matter seemed to mark a shift to a more adult relationship with their mothers. Unfortunately, this reactive stance seemed to work less well with the young people who had learning disabilities, because they asked fewer questions. Consequently, if young people feel less confident or able to raise sexual matters, then potential concerns or questions are likely to remain unanswered.
The difficulties that young people have accessing sexual knowledge can lead to confusion and can be a source of distress at this critical stage of development. Therefore, a more proactive approach to sex education is required to help young people adjust to their sexuality and in relationships. In turn, families may find asking for help about sensitive issues, like sex, difficult. Professionals should be encouraged to be proactive about talking with families and information should be made more freely available to parents.