Kate E. Reynolds

  • To what extent do parent carers of children/young people with autism act as facilitators around their children’s sexuality education.

    EXECUTIVE SUMMARY

    “A dissertation submitted to the University of Bristol in accordance with the requirements of the degree of Master of Science by advanced study in Disability Studies (MDS) in the Norah Fry Research Centre in the Faculty of Social Sciences and Law.”

    Stakeholders

    This executive summary is written for the key stakeholders in the dissertation, these being:

    1. Five parent carers living in Wiltshire, who consented and gave their time for the author to interview them.

    2. Wiltshire Parent Carer Council, which advertised for interviewees on the author’s behalf.

    The author wishes to convey her deep thanks to all stakeholders for their part in her dissertation.

    Aims

    The aims of the dissertation were to examine the role of parent carers of children and young people with autism surrounding sexuality education in the family and how sexual expression is supported by parent carers.

    The objectives of the dissertation were:

    1. To examine the existing literature about sex education for children and young people with autism, including attitudes, timing of sex education and what helps and hinders sex education at home.

    2. To conduct, record and transcribe semi-structured interviews with parent carers about issues surrounding sex education

    3. To analyse the data (the interviews) by identifying themes in the transcripts

    4. To relate the themes to the existing literature, to see if they reflect findings in the existing literature or contradict them

    5. To reach some conclusions and propose some recommendations about how the findings of the dissertation might be used.

    Research Procedure

    The author conducted a broad literature search, entering key words into search engines. She included all relevant research papers, published in journals since the year 2000 and seminal papers published before that year.

    The author conducted five interviews, which involved information about seven children on the autism spectrum aged between 9 – 16 years. She used a participatory exercise with interviewees to encourage thinking broadly about the issues and to stimulate discussion. All interviews were audio recorded, anonymised and transcribed by the author.

    The author examined the transcripts, noting any themes which appeared in them. These themes were linked to the existing literature and quotes were used to illustrate key points.

    Key Findings

    Participants agreed that four aspects of sexuality education were of high priority for all their children/young people, these being:

    1. Contraception

    2. ‘Bad’ friendships/relationships

    3. Strangers

    4. Sexually transmissible infections

    The author identified the following key themes from the above process:

    1. Safety issues were identified as being

    i. ‘Bad’ friendships/relationships

    All interviewees voiced concerns that their children might be vulnerable to being abused by their peers and not being aware enough to identify what was happening. Some participants gave examples from their children’s lives.

    ii. Stranger danger and sexual abuse

    Four parent carers cited stranger danger - predatory sexual approaches from strangers to the child – as being a greater risk than that from people known to the child, although this is the opposite of what is demonstrated by research evidenced in the literature.

    iii. Online safety

    Interviewees cited cases of grooming online and one case in which a young person misunderstood the context of passionate kissing seen online. All seven children spent considerable time on online activities each day, with parent carers having a range of knowledge and skills related to the internet and safety issues.

    iv. Mental health

    Participants all outlined worries that their children might lack self-esteem or be socially isolated and lonely due to their social communication difficulties. Some young people were being supported by the local Child and Adolescent Mental Health Services (CAMHS) for mental health issues apparently rooted in their autism.

    2. School issues were noted by interviewees, namely:

    i. Sex education in the classroom

    ii. Parent carers’ relationship with the school

    There appeared to be little communication between school and parent carers about sex education unless there was an issue, such as inappropriate sexual behaviours in public by children/young people or texting sexual images of themselves to their peers. However, none of the parent carers prevented their sons and daughters from attending optional sections of Sex and Relationship Education in school and all participants felt positively towards their child’s school, although one described not ‘trusting’ schools in general to deliver sex education satisfactorily.

    3. Issues with parent carers, notably:

    i. Which parent does the sex education at home

    Without exception, it was mothers who engaged in the sex education of their children/young people, regardless of the children’s gender. Fathers played either a far lesser or no role in the informal sexuality education of their children/young people.

    ii. How sex education happens at home

    Of particular note is that sex education at home was often engaged in as a response to sexual behaviours, rather than being a proactive process. Only one parent carer had a program of proactive sex education at home and another two taught their young people opportunistically about sex education.

    iii. What parental attitudes are towards sex education.

    Parental attitudes seemed to shape the emphasis on particular areas of sex education, whether this was in school or in the community, as reflected in the literature. This included any issues surrounding being gay, lesbian or bisexual, which appeared to be addressed only if the child/young person disclosed such a sexual preference.

    Different emphasis was apparent, in that some mothers with sons did not consider ‘wet dreams’ to be a priority to discuss, indeed two imparted that they had not thought this subject to be relevant or necessary. Some voiced that menstruation and pregnancy education was not a priority for their sons, since these were issues for young women.

    Conclusions

    This is a small research project, only involving five participants with a total of seven children on the autism spectrum among them, so findings cannot be generalised. However, the following conclusions about the findings were reached:

    1. Fear of safety issues created an environment in which children and young people in the study were monitored closely and given little room for taking risks and learning from these experiences. These children and young people had very limited social opportunities to develop friendships or a social circle because of concerns that they might be victimised. Parent carers had some misconceptions about the relative dangers of strangers versus those already known to the child/young person, which could be addressed in formal training sessions for parent carers about sexuality education. Interestingly, participants seemed to have less concept of how to protect their children/young people online, which is a growing area of concern for the possibility of grooming and sexual abuse. Mental health issues appeared to be derived largely from issues in social communication, according to interviewees, issues which lack of social opportunities could exacerbate. This is reflected in the literature where it is suggested that the concept of ‘vulnerability’ can be self-fulfilling because protection can prevent risk and useful life experience.

    2. What seems to be relatively weak communication between schools and parent carers can undermine the effectiveness of sexuality education because messages may not be consistent between home and school. Waiting for sexual issues before collaboration between schools and home takes place seems problematic.

    3. The dominance of female parent carers in delivering sex education at home may be less helpful to boys/young men who might benefit from a male role model in terms of sexuality. Furthermore, men may prioritise differently to women and would have personal experience of wet dreams, for example, giving them greater insight to enable their sons to manage this aspect of sexuality.

    4. All but one of the interviewees expressed a positive response to the opportunity to discuss sex education and how it related to their children/young people. Indeed, participants seemed to convey a significant amount of personal information during the interviews and asked the author many questions about factors related to sex education. Several parent carers voiced their desire for further opportunities to share information and experiences with their counterparts. This is reflected in the literature and could be a constructive means of supporting parent carers in supporting their children and young people.

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