)
Supporting the intimate lives of autistic adults
Monique Huysamen, Manchester Metropolitan University
SAAIL (Supporting Autistic Adults’ Intimate Lives) is a participatory research project exploring how autistic people think adult social care in England can better recognise and support their intimate lives. As the project comes to a close around World Autism Awareness Day, project lead Monique Huysamen reflects on why it was needed and outlines the project outcomes that will help support autistic people’s relationships in future.
How policy and guidance overlooks intimacy
In 2021, just as the SAAIL project started, the Government published the latest version of the National Autism Strategy, which underpins their approach to improving the lives of autistic people until 2026. The SAAIL team were eager to see what the new strategy had to say about intimate lives. The strategy opens with a Ministerial Foreword stating that, “over the next 5 years, we want to create a society that truly understands and includes autistic people in all aspects of life”. While support for almost every “aspect” of social life – housing, work, community, and relationships with family and carers – is discussed, an important aspect of autistic people’s lives was missing: their intimate relationships. Given that positive intimate relationships can help mitigate loneliness and isolation, which disproportionately affects autistic people, it was surprising that support for intimate relationships was not mentioned.
This inspired us to conduct an analysis of policy and guidance documents published by English national health and social care agencies to investigate how they represent and prioritise autistic people’s intimate lives. (You can read more about the emerging findings in our journal article, our short report aimed at policy makers, and on the policy section of our website.)
Like the Autism Strategy, most of the documents we scrutinised did not recognise intimate lives proportionally. In the rare instances where intimate lives were mentioned, there was a tendency to talk about autism and learning disabilities as though they were the same thing, without mentioning autism-specific needs such as those around sensory and communication differences and preferences and social anxiety. Moreover, the focus in these discussions was disproportionately on risk and vulnerability. These documents often covered staff’s responsibility to mitigate risks but seldom their responsibility to support autistic people to access and enjoy intimate relationships. Failure to recognise intimate lives beyond risk reinforces broader damaging and infantilising stereotypes about autistic people as either disinterested in, or incapable of, developing intimate relationships. When people aren’t recognised as having legitimate intimate lives and needs like everyone else, it can be profoundly dehumanising. Challenging this was the wind behind the SAAIL project.
Asking people about their intimate lives
Our project aimed to collect rich and detailed accounts of a range of autistic peoples’ intimate lives, as well as evidence of their social care needs and priorities. We interviewed 25 people and 46 people participated in our forum-style focus groups hosted on Discourse. The forums were asynchronous, meaning participants could log in and contribute to the conversation at a time and pace that suited their needs and preferences, making them more accessible. The focus groups were facilitated by an autistic researcher and were entirely autistic spaces where participants could share their experiences and opinions.
Participants ranged from 19 to 63 years old; most realised they were autistic as adults; 41 % identified as black or as being part of a minority ethnic group; and people described an array of gender and sexual identities, with 53% of all participants identifying as something other than cisgender or heterosexual. The diversity among SAAIL participants is a very important reminder that autistic people are not a homogenous group – they have varying lives and intersecting needs and identities alongside being autistic that should be considered when shaping support.
The vast majority of participants said that no health and social care professional had asked them about their intimate lives and how they could support them, even though there was a genuine need in this area. Alongside talking about pleasure, positive experiences, and their hopes and ambitions for their intimate lives, our participants shared various challenges and barriers that they faced. The most common set of challenges were related to non-autistic people’s lack of awareness of neurodiversity and how this might play out in dating and intimate situations.
Our society is set up according to neuro-normative and heteronormative dating and relational scripts and communication patterns. For instance, flirting is all about using indirect communication, including eye contact, body language, and ambiguous language to let someone know you’re interested in them. While this can be hard for anyone to navigate, for many of SAAIL’s participants it left them feeling anxious and excluded from dating and relationships. Some participants said this made them feel unsafe and unsure when their own boundaries might be crossed. Many preferred direct, clear, and unambiguous patterns of communication and giving and receiving explicit, clear consent – a communication style we believe everyone in society would benefit from.
Tools to support sex and relationships
SAAIL’s participants discussed and debated what the support and resources around sex and relationships should look like for them. What people wanted and needed was incredibly varied, yet everyone wanted support where they felt safe, respected, and not infantilised. On the SAAIL website, you will find our Autism and Intimacy toolkits – one for autistic people and another for health and social care providers. These toolkits are being co-produced with a wide range of collaborators (read more about our co-production workshops here). The toolkits are evolving, and topics currently include Hypermobility and sex and relationships, BDSM and Kink, being Autistic and Queer. We are very excited about the “menu for support” toolkit on how health and social care providers can ensure that intimate lives are considered in social care assessments and conversations about support – its already being used in Australia.
The SAAIL website and the toolkits have been a collaborative effort from participants, practitioners, and researchers which we hope will continue to grow and develop long after the project has officially ended.
Read NIHR Social Care Speciality posts here →
