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A Qualitative Comparison of Caregiver and Youth with Autism Perceptions of Sexuality and Relationship Experiences

Teti, Michelle, DrPH; Cheak-Zamora, Nancy, PhD; Bauerband, L. A., PhD; Maurer-Batjer, Anna, MSW

Journal of Developmental & Behavioral Pediatrics: January 2019 - Volume 40 - Issue 1 - p 12–19
doi: 10.1097/DBP.0000000000000620
Original Articles

Objectives: 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.

Methods: 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.

Results: 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.

Conclusion: 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.

This article has supplementary material on the web site: www.jdbp.org.

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: tetim@health.missouri.edu.

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.

Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal's web site (www.jdbp.org).

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

Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.