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Autism, Sexuality and Relationships: Defining Themes and Priorities for Future Research Based on a Participatory Approach.
In 2018, a special interest group (SIG) was initialized at INSAR 2018 to discuss research priorities resulting in the development of a research agenda relating to autism, sexuality and romantic relationships.
Objectives:
To explore research priorities relating to sexuality and romantic relationships in and together with autistic people, in order to develop a research agenda that contributes to the well-being of autistic adolescents and adults.
Methods:
The nominal group technique (NGT), reliable to define healthcare priorities, was applied in eight groups (n=65, 31 self-identified as autistic). Five of these groups were mixed groups consisting of researchers, autism advocates, clinicians and students (n=39, group range n=5-10, all professionals or students, 5 autistic). In order to warrant the input of autistic adolescents and adults, three additional groups were organized; two in collaboration with a Dutch LGBT+-group (Lesbian, gay, bisexual, trans and inclusive to all other groups) for autistic people (n= 20, group range n= 8-12) and one with a self-organization (Persons on the Autism Spectrum; PAS) for autistic adults (n=6). Themes were grouped based on thematic analysis. All participants selected 5 themes they found having the highest priority. Priorities were calculated and compared over all groups and in autistic participants.
Results:
Three general themes emerged, overarching 17 thematic clusters, based on 222 topics collected during the group meetings. The first, ‘Getting a better understanding’, included questions relating to sexual development across lifespan, sexuality and intellectual disability, cultural differences, experiences and needs in autistic LGBT+’s, sexual identity development, gender differences, relationship characteristics and experiences, pregnancy and parenthood, healthcare, sensory issues, well-being, and the influence of medication use. Second, ‘Improving support and treatment’ included the need for evidence on ways to support and promote sexual well-being and healthy romantic relationships, preventing offending and victimization, improve healthcare experiences and needs, and involving and supporting families, partners and professionals. Finally, ‘Changing societal views and practices by a participatory approach’ referred to the need for a participatory approach in research and ways to influence societal views on autistic people, their sexuality and romantic relationships. Using the priority scores as indicated by all participants, ways to support romantic relationships (1), sexual well-being (2) and getting a better insight in sexual development across lifespan got the highest priority scores (3). The autistic participants ranked insight in lifespan issues higher than education and support.
Conclusions:
This research agenda relating to autism, sexuality and romantic relationships can guide the design of future research in this field. Highest priorities are promoting and supporting sexual well-being and positive relationship experiences and prevent victimization. Therefore, increasing our insight in sexual development across lifespan, with attention to the influence of autistic information processing characteristics in relationship experiences and types, and in sexual identity development and the needs of autistic LBGT+’s is needed. Gaining knowledge should benefit and support autistic people directly, and indirectly by influencing societal views and stereotypic ideas on autism, sexuality and romance. A participatory approach could guarantee that research is valuable to the daily lives of autistic people.