About
SAAIL is a participatory qualitative research project based at Manchester Metropolitan University that aims to explore and represent autistic adults' intimate lives in affirmative ways.
Rationale
Romantic 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. Positive, happy, and pleasurable intimate relationships can play an important role in providing social support and mitigating the risks of loneliness.
Our society is set up according to neurotypical dating and relational scripts. A lack of awareness amongst non-autistic people and health and social care structures around experiences of neurodiversity and how communication, relational and sensory differences may play out in dating and intimate situations can cause barriers for autistic people.
In current social care policy and services in England, we have found that there is almost no mention of autism-specific support to help autistic people participate in 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.
SAAIL is funded by the National Institute for Health and Care's Research's School For Social Care Research, under the broad remit of improving adult social care in England. The project is informed by critical theories and the social model of disability, which focuses on how normative society can be exclusionary and inaccessible.
Objectives
This study will build an evidence base for developing social care support and resources for autistic adults to enjoy intimate and sexual relationships by:
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Conducting a systematic analysis of health and social care publications 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
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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
Policy Analysis
A systematic analysis of national health and social care policies and guidance documents to explore how they represent and prioritise support for autistic adults' intimate lives.
2
Interviews & Focus Groups
Using interviews and focus groups to gather in-depth qualitative data on autistic people's experiences around their intimate lives and what support they say they need.
3
Workshops
Bringing together all the data we have collected to co-produce two autism and intimacy toolkits, one for autistic adults, and one health and social care providers.
Participants
This project focuses on autistic people living in England. We aimed to include the voices of autistic adults of all genders and sexual identities and communities (including those who identify as heterosexual, LGBTQIA+, bisexual, queer, kinky, poly, asexual, aromantic, to name a few examples). We asked to hear from people of all relationship configurations and from all ethnic and cultural backgrounds.
We interviewed 25 participants and 46 people participated in our focus groups. Overall 63 participants took part in SAAIL
SAAIL participants were a very diverse group
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Participants ranged from 19 - 63 years old
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Most (but not all) realised they were autistic as adults
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41 % of SAAIL participants identified as black or as being part of a minority ethnic group
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We had participants of all genders and sexual identities. About 53% of all participants identified as something other than cisgender and heterosexual
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SAAIL used no predefined demographic categories and participants chose how they defined themselves.
Data Collection Methods
We facilitated anonymous text-based online forum discussion groups using the discourse platform. Forty-six autistic adults participated, this was a very diverse group varying in age and identifying across a wide range of gender, sexuality, and ethnic and cultural identities.
The forums were asynchronous, meaning participants could log in and contribute to the conversation at a time and pace that suited them over a number of weeks. These group discussions were facilitated by our autistic researcher, and were therefore entirely autistic spaces. Discussions were about autism and intimacy and how to provide better support for autistic people and provided a safe space where autistic participants could share their experiences and opinions collectively.
There were five focus groups "men's group", "women's group", "queer group", "black autistic group", and "mixed group". Each participant chose which group they wanted to be assigned to.
Online Forum Group Discussions
Interviews
We interviewed 25 autistic adults about their experiences of flirting, dating, hooking up, relationships, intimacy, and sex.
People were free to participate in the format that was most
accessible for them, including video calls, phone call, asynchronous text chat (like WhatsApp), and in-person interviews.
Interviews were anonymous and offered a private and
non-judgemental space to share personal experiences, perspectives, and ideas around how autistic adults' intimate lives can be supported, respected and embraced.
Systematic Document Analysis
Autistic people face more social barriers to, and experience greater anxiety around, intimate relationships than the general population in our majority neurotypical society. This leads to increased loneliness and social isolation. National health and social care policies and publications should recognise these inequalities and help service systems to reduce them. We systematically analysed a cross-section of English national health and social care publications to investigate how they represent and prioritise autistic adults’ intimate lives.
Stakeholder Co-production workshops
The final phase of the SAAIL project involved delivering two stakeholder workshops. We invited some of our research participants as well as a large variety of professionals with expertise and/or lived experience in various areas of autism and intimacy. These included occupational therapists, sex therapists, sexual service providers, academics, legal professionals, students, members of charities, most of whom are autistic themselves.
These workshops were an opportunity for workshop attendees to work with some of our data, to network, share their own work, and most importantly to help us build our toolkits.
Our partners and collaborators
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The study represents independent research funded by the National Institute for Health and Care Research (NIHR) School for Social Care Research (NIHR SSCR). The views expressed are those of the authors and not necessarily those of the NIHR SSCR, NIHR or Department of Health and Social Care.