Title: Sexuality, Autism and Young People: Families Study (SAY Families)
Funder: Health and Care Research Wales (Welsh Government)

Abstract: Young people's sexuality is a vital part of their identities and well-being. In late adolescence, young people become more independent and develop stronger peer relationships. Sex is a private matter, and talking with their friends is an important way for young people to gain knowledge and to explore points of confusion or concern. However, the situation is likely to be different for people with high functioning autism/Asperger syndrome (HFA/AS) who are often socially marginalised. These young people also have difficulty understanding other people's thoughts and feelings, making it harder to develop friendships. Not only does this mean they have fewer people to talk to about sex, but having close relationships is also a way of preparing for intimacy and so this may have a double impact on quality of life. Our model of the factors influencing the experience and understanding of sexual identity and development in young people with disabilities emphasises social context (Pownall et al., 2011, 2012). The social circumstances of interest include deprivation and cultural differences, especially the experience of being brought up in Welsh-English bilingual communities. Gender is also important because public attitudes towards the developing sexuality of young men and women are different, with particular concerns about the vulnerability of young women with disabilities. Our focus for the proposed research is the family context: families are usually the main support for young people with HFA/AS. We will examine parents' experience of supporting their offspring's developing sexuality, using methods developed by the research team in our previous study on mothers' views about supporting young people with intellectual disability. Rather than simply relying on mothers' reports, fathers will also be interviewed, along with a number of couples. This is because parenting is a shared task within families (where there are two parents) and it is important to explore how parents negotiate this sensitive topic together. A larger number of family members will also be surveyed, and an online survey will supplement face-to-face survey interviews. Families will be recruited with the help of our collaborating partner Autism and disability organisations in Wales, and also across the UK in Scotland, England, and Northern Ireland. Families can struggle with how best to support their offspring with their sexuality. Knowing when and how to talk to their children can be difficult. A better understanding of parents' views and experiences will allow us to design materials to help them communicate more effectively with their offspring about sexual matters, and to develop advice for services to help them to be more responsive. We will engage with policy makers and those who commission social care, health, and education services for young people with autism. Sexuality is an important area, but little evidence is currently available to inform best practice. Towards the end of the research project, we will offer training workshops for parents and for professionals using our findings and new materials developed with our collaborating organisations. We will evaluate these workshops both in terms of the impact on participants’ understanding and attitudes and by using post-workshop feedback from participants. Pownall, J. D., Jahoda, A., Hastings, R. P., & Kerr, L. (2011). Sexual understanding and development of young people with intellectual disabilities: Mothers’ perspectives of within-family context. American Journal on Intellectual and Developmental Disabilities, 116, 205-219. Pownall, J. D., Jahoda, A., & Hastings, R. P. (2012). Sexuality and sex education of adolescents with intellectual disabilities: Mothers’ attitudes, experiences, and support needs. Intellectual and Developmental Disabilities, 50, 140-154.


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH;REPRODUCTIVE HEALTH AND CHILDBIRTH