Supporting autistic adults’ intimate lives (SAAIL study)

Introduction

Intimate and sexual relationships play a significant role in most adults’ lives, and the presence, absence, and quality of these relationships can impact our physical, mental, and sexual health and our overall sense of well-being. Healthy intimate relationships can play an important role in providing social support and mitigating the risks of loneliness. Most people face challenges with intimate relationships at some point in their lives. Research shows that it can be particularly challenging and anxiety provoking for autistic people to initiate and maintain sexual and romantic relationships.

The diagnostic criteria for autism contain a constellation of characteristic differences in communication and social imagination. These differences can make establishing relationships more challenging for autistic people, particularly as society is set up according to neurotypical dating and relational scripts. A lack of awareness amongst non-autistic people around experiences of neurodiversity and how associated relational differences may play out in dating and intimate situations can cause barriers for autistic people.

However, in social care policy and services in England, there is a near-complete absence of attention to autistic adults’ desire to have safe and pleasurable sexual relationships. Research on autistic people’s experiences of intimacy and relationships (outside of that which focuses on “problematic” or “deviant” sexual behaviour) is very limited. This is particularly true for autistic adults without co-occurring learning disabilities.

Objectives

This study aims to build an evidence base for developing social care support and resources for autistic adults without learning disabilities to enjoy intimate and sexual relationships.

It will do this through:

1. A systematic analysis of documents and a stakeholder mapping exercise to identify and then engage with those who have a stake in, or could inform and support changes to, social care policy and practice so that it meets autistic adults’ intimate relationship needs most appropriately
2. An exploratory qualitative design to gather rich and detailed data on autistic adults’ experiences of and challenges with navigating intimate and sexual relationships throughout their adult lives.

Methods

This study is divided into three work packages (WP):

1. WP1 involves a systematic analysis of local and national health and social care policies, guidance, and documents to explore how they represent the sexual health needs of autistic adults without learning disabilities, and preliminary social care stakeholder analysis
2. WP2 involves gathering qualitative data on participants’ experiences of navigating intimate and sexual relationships throughout their adult lives through interviews and focus groups
3. WP3 involves a series of participatory workshops aimed at translating the study’s research findings for social care impact by involving a wide range of stakeholders. These workshops will produce two Autism and Intimacy Digital Toolkits, one for autistic people and one for social care providers and neurotypical people.