Caregivers play a critical role in educating their youth with autism about sex and relationships; yet, we know little about caregivers' ability to deliver this support, youth's perspectives, or the congruence of youth and caregiver experiences. To help fill this gap, we explored and compared the perspectives of caregivers and their youth with autism spectrum disorder about and interactions regarding sex and relationships.
We conducted qualitative one-on-one interviews with youth (n = 27) and focus groups with their caregivers (n = 29). A semi-structured guide elicited information from both the groups about the youth's physical, emotional, and social transition to adulthood. Thematic analysis, including coding and analytical memos, identified key themes within and across youth and caregiver discussions about sex and relationships.
Thematic analysis of interviews revealed overarching themes about companionship, interest and experience, and access to sexual information across both the groups. Themes included different nuances among caregivers and youth, however. Caregivers expressed more future-oriented concerns than youth and overestimated their knowledge of their youth's interest and experience with sex and comfort confiding in caregivers. Youth described relationships and information sources of which their caregivers were unaware.
Interventions for both caregivers and youth can support healthy and safe intimate relationships among youth with autism spectrum disorder. By comparing youth and caregiver dialogues, this study adds to what we know, and it can be used to develop a blueprint for improving communication patterns that not only include but also extend well beyond sexual health.
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Health Sciences, University of Missouri, Columbia, MO.
Address for reprints: Michelle Teti, DrPH, Health Sciences, University of Missouri, 512 Clark Hall, Columbia, MO 65211; e-mail: firstname.lastname@example.org.
Supported by the Assistant Secretary of Defense for Health Affairs through the Autism Research Program, Idea Development Award under Award No. W81XWH-14-1-0604. Opinions, interpretations, conclusions, and recommendations are those of the author and are not necessarily endorsed by the Department of Defense.
Disclosure: The authors declare no conflict of interest.
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The US Army Medical Research Acquisition Activity, 820 Chandler Street, Fort Detrick MD 21702-5014 is the awarding and administering acquisition office.
Received April 06, 2018
Accepted August 21, 2018