As the survey I carried out named sensory sensitivities and intimate relationships as the top priorities for future research, I then carried out (mostly) written interviews to explore these in detail. I interviewed sixteen autistic adults (either via skype, messenger, or in writing depending on their preference) regarding their experiences of intimacy and sexuality. Some people did a single interview, others two or three. Part of my ethos was to listen to what interviewees want to discuss rather than imposing my own ideas of what is important, and so while my initial interest was mainly around sensory experience this evolved as interviews took place, and the importance of other elements emerged. These are by no means all the findings, but just a brief overview of some points. The full thesis with all results is available here.
A central element that many participants spoke about is the important place of authenticity, honesty, and ‘open-ness’ in their lives. They see these as valuable qualities in themselves and in others, and often as being in tension with the social world which (over)values conformity, applying pressure on participants to conform to sometimes nonsensical and damaging conventions, and sometimes requiring people to camouflage their behaviours, with often damaging effects. This pressure is experienced in very concrete ways, with many people who I interviewed having been bullied, harassed, mistreated and misunderstood by their (non-autistic) peers and families.
Most people who discussed sexuality education found that it concentrated on the ‘mechanics’ of heterosexual sex, and did not address issues that are important to them such as consent, intimacy, pleasure, and sexuality that does not conform to heterosexual norms. For some, the combination of this lack of information, and their difficult early experiences left them vulnerable to abusive intimate experiences.
However, participants also shared ways in which they overcome the challenges posed, not ‘by autism’, but by being autistic in a (largely hostile) social world that has difficulty accepting ways of being that do not meet normative – non-autistic and non-heteronormative – expectations. Environments and individuals ‘punish’ those who do not conform, often with devastating and long-lasting effects. Camouflaging may be one interactional strategy employed to mitigate negative or complex social experiences, but which may come at a price, threatening both authenticity and mental health.
Being diagnosed, self-education about autism, meeting other autistic (and, for some, queer) people, developing and sharing passionate interests with others, and accessing online communities are some of the ways participants move from early feelings of rejection to better self-understanding, self-care, and fulfilment.
Ultimately, these factors represent a move away from pressures to conform, and towards experiences that validate and support their own ways of being in the world – a shift from being victims of others’ expectations to living and valuing their own authentic experience. Identifying and seeking out authentic experience – intellectually, socially, sensorially, and intimately – emerge from these interviews as qualities which contribute to self-acceptance and well-being for many of the people who shared their stories with me.
I would like to thank all my participants for their time, their trust, and their generosity, as well as their patience while helping me to understand, as best I can, the challenges they face and the opportunities they create while navigating sexuality and intimacy.