Adolescents with Autism Spectrum Disorder and Their Caregiver’s Perspectives on the Adolescents' Sexuality and Relationships

Background: Previous research has shown that many adolescents with Autism Spectrum Disorder (ASD) are interested in pursuing sexual or romantic relationships and caregivers play a critical role in providing sex and relationships education. Unfortunately, we know little about the congruence of adolescent and caregiver narratives about the adolescent’s sexual and romantic interests or effectiveness of the caregiver’s education.

Objectives: The goal of this study was to fill the gap in existing research and better understand the needs of caregivers and adolescents in supporting the adolescent’s sexual self-hood. To achieve this goal, this study explored and compared the perspectives of caregivers and adolescent dyads regarding sex and relationships via separate qualitative interviews.

Methods: Qualitative methodology was used to capture adolescent and caregiver in-depth thoughts and experiences. Eligibility criteria for adolescents included being between the ages of 16 and 25 years; having an ASD diagnosis; English speaking; and capable of engaging in study activities. Diagnosis of ASD and age were verified through clinical records. Caregivers were defined as primary care takers of the adolescent, age 16-25 years, with an ASD diagnosis.

Caregivers took part in 90-minute focus groups while adolescents participated in 30 to 60-minute semi-structured individual interviews. Interview guides for both groups centered on exploring transition experiences and independence needs. Data (40 pages for caregivers and 72 pages for adolescent transcripts) were entered into Atlas software and analyzed, by two coders separately, using methods of thematic analysis to capture and compare experiences and attitudes. Sex and relationships were central themes in both groups.

Results: Twenty-seven caregiver and adolescent dyads participated in the study. Most adolescents within our study had a diagnosis of Asperger’s Syndrome (40.7%) or Autism/Autistic Disorder (33.3%) with 75% of adolescents rated their ASD symptoms as mild. Analysis of qualitative data revealed overarching themes about companionship, interest and experience, and access to relationship information across both groups. Caregivers (1) expressed more concerns (present and future) about companionship problems than adolescents; (2) seemed to underestimate adolescents' interests and experiences with sex/relationships; and (3) overestimated adolescents' comfort confiding in caregivers about sex/relationships. Adolescents (1) spent more time describing current friendships and romantic relationships; (2) exhibited less future-oriented thinking than their caregivers; and (3) describe multiple places to access sexual education and relationship advice but reported lacking real knowledge and practical advice.

Conclusions: Our study can inform interventions to better support adolescents' sexual development. Findings show that successful interventions need to include caregiver and adolescent curricula as well as knowledge checks for adolescents to insure engagement and information retention. The importance of sex and relationship research with adolescents with ASD cannot be overstated. Thus, understanding adolescent and caregiver perspectives on the adolescent’s sexual and romantic relationship is critical to both caregiver and adolescent’s holistic well-being and development.