| Literature DB >> 32588542 |
Jeroen Dewinter1,2, Anna I R van der Miesen3, Laura Graham Holmes4.
Abstract
The number of empirical studies on sexuality and intimate relationships in autistic people has grown over the last years with the increasing awareness that sexuality and intimate relationships are an important part of life and well-being for autistic people. Further, expression and enjoyment of sexuality is a fundamental, basic human right. This paper reports on needs for future research in this area based on the input of autistic adults, researchers, and other stakeholders (e.g., parents and professionals). Utilizing the nominal group technique, 65 individuals participated in eight groups in which they brainstormed on research questions they deemed most important. Responses were categorized into themes and ranked according to importance based on the level of priority attributed by participants. Findings suggest that future research should focus on developing ways to support sexual and relationship well-being and getting a better understanding of sexuality and relationships in autistic people. Also, attention was drawn to the need for studying the influence of stereotypical societal views, and stigma. Finally, the importance of participatory research to include perspectives of autistic people in research and practice was stressed. LAYEntities:
Keywords: autism; community-based participatory research; education; gender identity; health; quality of life; sexuality
Mesh:
Year: 2020 PMID: 32588542 PMCID: PMC7496808 DOI: 10.1002/aur.2340
Source DB: PubMed Journal: Autism Res ISSN: 1939-3806 Impact factor: 5.216
Participants Characteristics
| Role | Nonautistic participants | Autistic participants |
|---|---|---|
| Researcher | 12 | 2 |
| Clinician and researcher | 9 | 1 |
| Clinician | 6 | 0 |
| Student | 4 | 1 |
| Family member | 3 | 1 |
| Self‐advocate | 0 | 26 |
Nonautistic family members included one clinician, one autism advocate, and one student.
From self‐advocacy or support groups Autiroze and Persons on the Autism Spectrum (PAS) Netherlands.
Figure 1Thematic groupings. All topics prioritized by the participants related to 17 themes, brought together in three thematic groups. The Figure illustrates a meaningful relationship between the groups.
Highest Ranked Themes
| Ranking based on | Themes | Thematic grouping | Definitions | Number of questions related to theme | Example topics/questions | |||
|---|---|---|---|---|---|---|---|---|
| Prioritization within the full sample | Prioritization in the groups with only autistic participants | Number of votes in the full sample | Number of votes in the groups with only autistic participants | |||||
| 1 | 2 | 1 | 2 | How to support healthy and satisfying romantic relationships? | 1 | Topics relating to finding, keeping, and dealing with yourself and (a) partner(s) in a romantic/sexual relationship | 45 |
How to improve communication skills when in a romantic relationship? How can autistic people be supported in developing authentic relationships without imposing neurotypical norms about how dating/relationships work? How can people learn to manage emotions in a romantic relationship: For example, obsession with partner? |
| 2 | 3 | 2 | 4 | How to support and promote sexual well‐being? | 1 | Topics relating to training and education of knowledge and skills in the autistic individual | 33 |
What are effective strategies for appropriate sex education for autistic women? What is the influence of the environment on perception of which sexual behaviors are accepted and which are inappropriate? How do we accurately measure the impact of parent training and sexuality education on outcomes? |
| 3 | 1 | 3 | 1 | How do autistic adolescents and adults experience and navigate sexuality across the lifespan? | 2 | Topics relating to sexual and relationship experiences and needs in different stages of life | 25 |
What are common trajectories in sexuality development and relationships for autistic people? What is the role of early negative (social) experiences on sexuality and relationships? How do older autistic adults experience sexuality in their lives: What are the positive and negative experiences, successes, and failures? |
| 4 | >10c | 4 | >10c | How to prevent sexual victimization and sexual offending? | 1 | Topics relating to the prevention of and care to victims and individuals who have offended | 12 |
How can abuse/exploitation be recognized by people themselves and by others? What are mechanisms behind (unintentional) sexual offending? How can we prepare autistic women to negotiate sexuality without being taken advantage of? |
| 5 | 8 | 5 | 8 | How to involve parents, partners, and professionals to support sexual well‐being and relationship satisfaction? | 1 | Topics relating to involvement, knowledge, attitudes, and skills of caregivers and professionals | 16 |
How can we educate and change parents and stakeholders' attitudes toward developing partnership and sexuality in autistic persons? How best to support professionals how to do this work well? How can professionals best invite autistic people to discuss sexuality and sexual diversity? |
| 6 | 4 | 8 | 3 | How does sexual and gender identity develop in autism? | 2 | Topics relating to identity development | 23 |
What is the interrelationship between formation of different identities (autistic, gender, sexual) and do they have impact on each other? How do autistic people define their sexual identity? |
| 7d | 6 | 6 | 5d | What is unique about autistic sexuality and intimacy? | 2 | Topics relating to specific autism features (e.g., sensory sensitivity) relating to sexuality and relationships | 13 |
What is the influence of information processing characteristics and autistic thinking on sexuality? What the influence of sensory processing characteristics on sexual experience? Is there a connection between interoception and sexual awareness? |
| 7d | 5 | 9 | 5d | What works for whom in relationships? | 2 | Topics relating to types of relationships, characteristics of the relationship, and/or partners | 10 |
How do people experience having a neurotypical versus autistic partner? What are expectations toward romantic relationships? How do autistic people experience different types of relationships? (e.g., both autistic partners, LAT) |
| 9 | 7 | 7 | 5d | What are the experiences and needs of LGBT+ identifying autistic individuals? | 2 | Topics relating to the experiences of autistic LGBT+ | 7 |
How do autistic LGBT+ individuals experience concealing or divulging multiple identities? (“double coming out”) How do autistic individuals feel about diversity? |
| 10d | 9 | 10 | 7 | Autistic perspectives in research, healthcare, and society | 3 | Topics relating to societal views, ideas, and stereotypes | 10 |
What are parents, stakeholders, and society's attitudes toward partnership and sexuality of autistic individuals? How does stigma affect dating experiences? |
| 10d | >10c | >10c | 10 | How do sexuality and relationships develop in autistic individuals with lower levels of intellectual functioning? | 2 | Topics relating to sexuality and relationships in autistic individuals with intellectual disabilities | 6 |
What are the experiences and needs relating to sexuality and relationships of autistic people with intellectual disabilities? What are development trajectories in sexuality in autistic individuals with an intellectual disability? |
Twelve themes are included in the Table due to tied ranks.
b Thematic groupings are (1) improving support and interventions that promote sexual health and satisfying relationships, (2) comprehensive understanding of sexuality and relationships, and (3) autistic perspectives in research, healthcare, and society.
c Themes were ranked outside of the top ten for group.
d Tied for ranking.