Relationship Interest, Knowledge and Experiences Among Young Adults with Autism Spectrum Disorder
Sexuality and intimacy are important parts of all adolescent development and influence health and quality of life. Recent research has debunked the notion that young adults with ASD (YA-ASD) lack sexual experiences and desires. However, developing and maintaining sexual and romantic relationships are difficult for YA-ASD due to communication barriers and lack of social awareness. Further, a dearth of research exists about YA-ASD ‘s sexual and romantic relationship experiences and desires from the perspectives of YA-ASD themselves.
The objective was to explore the perspectives and experiences of YA-ASD regarding their sexual and romantic relationships using qualitative methods.
Subjects were recruited from three major ASD treatment and support sites in different cities within the Midwest United States. We conducted 45 minute semi-structured interviews with 27 YA-ASD to explore sexuality and intimacy. Interviews were transcribed verbatim totaling over 1,000 pages of session transcripts and 150 pages of observational notes. The data was analyzed using theme analysis, which included initial and axial coding, analytical memos, and organizational matrices and reports. An iterative process was used and three separate investigators coded all data to ensure coder agreement.
The 27 young adult participants ranged in age from 16-25 years old ( = 19.19). The majority of participants in the study were non-Hispanic white (96%) and male (74%). Most participants described themselves as having Asperger’s Syndrome (41%) or Autism/ Autistic Disorder (33%) and having mild ASD symptomology (74%).
Four thematic categories were uncovered that defined YA-ASD’s sexual and romantic relationship experiences and perspectives including: 1) Interest in relationships, 2) Imagined ideal partners, 3) Reality of relationships, and 4) Seeking advice. Although many YA-ASD expressed wanting to be in a relationship, few reported having partners. Among those that had present or past relationships, the actual relationships rarely met their ideals. YA-ASD talked to their parents and friends but rarely health care providers about relationships and sexuality. The few reported conversations with providers were usually vague and about future planning (ex. Marriage). Most young adults, even those uninterested in having a relationship, expressed the desire for more and clearer information about sex and relationship building.
This study was the first to talk to young adults about sexuality and romantic relationships and provides greater insight into how young adults perceive romantic relationships, their experiences and desires for the future. We found that YA-ASD are interested in romantic and sexual relationships but are relatively unprepared to develop or sustain them. Very few young adults had conversations about sexual safety with health care providers or formal sexual health education.
These findings are important because they not only improve our understanding of sexuality of YA-ASD, but also demonstrate a sound methodological procedure (individual interviews) to facilitate input from YA-ASD.
We recommend that sexual education is introduced early and includes social/relationship skills-building and courtship modeling. Caregivers, educators and health care providers must initiate discussions about sexual health with YA-ASD including concepts of sexual self-hood and risk. Future research should examine issues of sexuality from the young adult’s perspective.