Parent-child sexuality education in families with sons or daughters with autism or Down syndrome: A phenomenological study




Reed, Margaret

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This phenomenological study's purpose was to explore parent-child sexuality education in families with sons or daughters with autism or Down syndrome. The focus was on the qualitative experience of the parents in these families, how and what they taught their son or daughter about sexuality, and what the parents thought family therapists need to know about their unique experience in sexuality education with children with these special needs.

Previous literature on this topic was focused in two main areas: the attitudes or concerns of parents or caregivers in regard to the sexuality or sexual behavior of the person with autism or Down syndrome, and the educational resources available to parents or caregivers on how to teach someone with autism or Down syndrome about sexuality. The literature review in this study also briefly addressed parent-child sexuality education as it occurs in families, as this was important to note for family therapy professionals who strive to understand the lived experiences of all types of families.

To explore the lived experience of the parents in this study, face-to-face interviews were conducted and audio recorded for the purpose of verbatim transcription. Recruitment letters, presentation of the proposed research, and snowball sampling yielded fourteen adoptive or biological parent participants of fifteen sons or daughters with autism or Down syndrome. After the interviews were transcribed verbatim, the transcripts were reviewed multiple times, divided by content, and then divided by thematic finding by research question.

Upon transcript reviews and analysis, it was determined that parents divided into two categories, tentative parents and assured parents. Tentative parents based the sexuality education they provided on concerns about embarrassment or safety of their son or daughter in public, found few or no resources available to help them teach, and seemed to have some difficulty with thinking of their son or daughter as a sexual being. Assured parents provided a more comprehensive sexuality education, one in which many different sexuality topics were covered, such as menstruation, masturbation, wet dreams, and homosexuality. Assured parents mentioned a variety of resources they found helpful in teaching their son or daughter about sexuality, and reported thinking of their son or daughter as a sexual person.

The parents' commonalities were religion and appropriateness; these topics arose in every interview. Also, both tentative and assured parents taught their son or daughter proper names for genitalia and that sexuality is primarily about relationships, not sexual intercourse. The groups of parents wanted family therapists to keep the family's cultural and societal beliefs, and the son or daughter's intellectual abilities in mind, as well as the range of abilities that exist in the autism and Down syndrome population.

Finally, the results of this study were discussed in comparison to a review of previous literature. Conclusions were drawn and limitations were detailed. The implications for family therapists and recommendations for future research were conferred.



Social sciences, Psychology, Individual & family studies, Behavioral psychology