A qualitative study of mothers’ experiences of supporting the sexual development of their sons with autism and an accompanying intellectual disability

Abstract

Objectives

The sexuality and sexual development of individuals with autism-spectrum disorder (ASD) and an accompanying intellectual disability is a neglected area, despite the fact that this group have the same sexual desires as their typically developing peers. Due to the socially marginalized position these individuals are often placed in, parents play a key role in supporting them with their developing sexuality. It is therefore important to understand parents’ experiences and perspectives about their offspring’s socio-sexual needs.

Methods

Five mothers of sons with ASD and a moderate to severe intellectual disability aged 16–24 were recruited from voluntary organizations and interviewed. Interviews were audio recorded then transcribed and analysed using interpretative phenomenological analysis to draw out key themes from their narratives.

Results

The mothers’ narratives were fraught with tensions. While they acknowledged the importance of their sons’ developing sexuality they also thought it brought many challenges. They wanted to provide their sons with appropriate sex education but were concerned that exposure to explicit materials could encourage inappropriate sexual behavior. They wanted support and information to help improve their confidence in supporting their sons’ socio-sexual needs. The mothers also expressed concerns about who would love their sons when they grew up.

Conclusion

This study highlights the need for services to provide sensitive and timely help for mothers who are supporting their sons in relation to their sexual development.

Keywords:

• sexuality
• intellectual disabilities
• learning disabilities
• mothers
• qualitative
• interpretative phenomenological analysis