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Parental Support for Sexuality Education and Expression Among Adults with an Intellectual Disability

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Abstract

Sexuality expression and experiences are an often-ignored component of health and well-being for adults with intellectual disabilities (ID). Adults with ID have gaps in their sexuality education, and experience restrictions from parents and caregivers exploring their sexuality. However, parental control does not deter adults with ID from desiring sexual experiences, and instead often leads to secretive and potentially exploitative relationships. Although this pattern is clear, we lack an understanding of the impact of parental attitudes on sexuality education and expression for adults with ID. The current study examines parental experiences attending to sexuality education and sexuality expression for adults with ID compared to their typically developing adult siblings. A mixed methods design was used including an online survey with 50 parents nationwide, and follow-up phone/video conferencing interviews with a subset of 20 parents. Findings from this study indicate that parents are more engaged with adults with ID and struggle to determine the appropriate level of sexuality education they should be providing to individuals with ID. Findings add to our understanding of the important role of the parent, and provides insight into training to support parents as they navigate these experiences.

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References

  1. Rowe, D.A., Sinclair, J., Hirano, K., Barbour, J.: Let’s talk about sex…education. Am. J. Sex. Educ. 13(2), 205–216 (2018)

    Google Scholar 

  2. American Association on Intellectual and Developmental Disabilities. (2019). Frequently Asked Questions on Intellectual Disability. Retrieved November 15, 2019 from https://aaidd.org/intellectual-disability/definition/faqs-on-intellectual-disability

  3. English, B., Tickle, A., das Nair, R.: Views and experiences of people with intellectual disabilities regarding intimate relationships: a qualitative metasynthesis. Sex. Disabil. 36(2), 149–173 (2018)

    Google Scholar 

  4. Whittle, C., Butler, C.: Sexuality in the lives of people with intellectual disabilities: a meta-ethnographic synthesis of qualitative studies. Res. Dev. Disabil. 75, 68–81 (2018)

    Google Scholar 

  5. Gardiner, T., Braddon, E.: ‘A right to know’. Facilitating a relationship and sexuality programme for adults with intellectual disabilities in Donegal. Br. J. Learn. Disabil. 37, 327–329 (2009)

    Google Scholar 

  6. Ward, K.M., Bosek, R.L., Trimble, E.L.: Romantic relationships and interpersonal violence among adults with developmental disabilities. Intellect. Dev. Disabil. 48(2), 89–98 (2010)

    Google Scholar 

  7. Klein, D.: Knowledge, attitude and behavioral changes as a result of sex education. J. Sex Educ. Ther. 10(1), 26–30 (2015)

    Google Scholar 

  8. Barr, E.M., Goldfarb, E.S., Russell, S., Seabert, D., Wallen, M., Wilson, K.L.: Improving sexuality education: the development of teacher-preparation standards. J. Sch. Health 84, 396–415 (2014)

    Google Scholar 

  9. Brown, M., McCann, E.: Sexuality issues and the voices of adults with intellectual disabilities: a systematic review of the literature. Res. Dev. Disabil. 74, 124–138 (2018)

    Google Scholar 

  10. Kelly, G., Crowley, H., Hamilton, C.: Rights, sexuality and relationships in Ireland: “It’d be nice to be kind of trusted’. Br. J. Learn. Disabil. 37, 308–315 (2009)

    Google Scholar 

  11. Tarnai, B.: Review of effective interventions for socially inappropriate masturbation in persons with cognitive disabilities. Sex. Disabil. 24, 151–168 (2006)

    Google Scholar 

  12. Chrastina, J., Vecerova, H.: Supporting sexuality in adults with intellectual disability—a short review. Sex. Disabil. (2018). https://doi.org/10.1007/s11195-018-9546-8

    Article  Google Scholar 

  13. Richards, D., Miodrag, N., Watson, S.L.: Sexuality and developmental disability: obstacles to healthy sexuality throughout the lifespan. Dev. Disabil. Bull. 1(2), 137–155 (2006)

    Google Scholar 

  14. Sala, G., Hooley, M., Attwood, T., Mesibov, G. B., & Stokes, M. A. (2019). Autism and intellectual disability: a systematic review

  15. Shtarkshall, R.A., Santelli, J.S., Hirsch, J.S.: Sex education and sexual socialization: roles for educators and parents. Perspect. Sex. Reprod. Health 39(2), 116–119 (2007)

    Google Scholar 

  16. Sexuality Information and Education Council of the United States (2004). Forty years of knowledge: SIECUS on sexuality and disability. In: SIECUS Report: Honoring the Past, Building the Future Celebrating 40 Years of SIECUS, vol. 32, p. 2

  17. Ballan, M.: Parents as sexuality educators for their children with developmental disabilities. Siecus Rep. 32(2), 29–30 (2004)

    Google Scholar 

  18. Schaafsma, D., Kok, G., Stoffelen, J.M.T., Van Doorn, P., Curfs, L.M.G.: Identifying the important factors associated with teaching sex education to people with intellectual disability: a cross-sectional survey among paid care staff. J. Intellect. Dev. Disabil. 39(2), 157–166 (2014)

    Google Scholar 

  19. Dupras, A., Dionne, H.: The concern of parents regarding the sexuality of their child with a mild intellectual disability. Sexologies 23(4), 79–83 (2014)

    Google Scholar 

  20. Pownall, J.D., Jahoda, A., Hastings, R.P.: Sexuality and sex education of adolescents with intellectual disability: mothers’ attitudes, experiences, and support needs. Intellect. Dev. Disabil. 50(2), 140–154 (2012)

    Google Scholar 

  21. Gomez, M.T.: The s words: sexuality, sensuality, sexual expression and people with intellectual disability. Sex. Disabil. 30, 237–245 (2012)

    Google Scholar 

  22. Swango-Wilson, A.: Meaningful sex education programs for individuals with intellectual/developmental disabilities. Sex. Disabil. 29, 113–118 (2011)

    Google Scholar 

  23. Sinclair, J., Unruh, D., Lindstrom, L., Scanlon, D.: Barriers to sexuality for individuals with intellectual and developmental disabilities: a literature review. Educ. Train. Autism Dev. Disabil. 50(1), 3–16 (2015)

    Google Scholar 

  24. Swango-Wilson, A.: Perception of sex education for individuals with developmental and cognitive disability: a four cohort study. Sex. Disabil. 27, 223–228 (2009)

    Google Scholar 

  25. Murphy, N.A., Elias, E.R.: Sexuality of children and adolescents with developmental disabilities. Pediatrics 118(1), 398–403 (2006)

    Google Scholar 

  26. Stanger-Hall, K.F., Hall, D.W.: Abstinence-only education and teen pregnancy rates: Why we need comprehensive sex education in the U.S. PLoS ONE 6(10), e24658 (2011)

    Google Scholar 

  27. Wilson, N.J., Parmenter, T.R., Stancliffe, R.J., Shuttleworth, R.P.: Conditionally sexual: men and teenage boys with moderate to profound intellectual disability. Sex. Disabil. 29, 275–289 (2011)

    Google Scholar 

  28. Blanchett, W.J., Wolfe, P.S.: A review of sexuality education curricula: meeting the sexuality education needs of individuals with moderate and sever intellectual disabilities. Rese. Practice Persons Severe Disabil. 27(1), 43–57 (2002)

    Google Scholar 

  29. Frawley, P., Wilson, N.J.: Young people with intellectual disability talking about sexuality education and information. Sex. Disabil. 34, 469–484 (2016)

    Google Scholar 

  30. Marsack, C.N., Perry, T.E.: Aging in place in every community: social exclusion experiences of parents of adult children with autism spectrum disorder. Res. Aging 40(6), 535–557 (2018)

    Google Scholar 

  31. Cheak-Zamora, N.C., Teti, M., First, J.: ‘Transitions are scary for our kids, and they’re scary for us’: family member and youth perspectives on the challenges of transitioning to adulthood with autism. J. Appl. Res. Intellect. Disabil. 28, 548–560 (2015)

    Google Scholar 

  32. Millar, D.S.: “I never put it together”: the disconnect between self-determination and guardianship—implications for practice. Educ. Train. Dev. Disabil. 42, 119–129 (2007)

    Google Scholar 

  33. Azzopardi-Lane, C., Callus, A.: Constructing sexual identities: people with intellectual disability talking about sexuality. Br. J. Learn. Disabil. 43(1), 32–37 (2015)

    Google Scholar 

  34. Foley, S.: The UN convention on the rights of persons with disabilities: a paradigm shift in the sexual empowerment of adults with down syndrome or more sound and fury signifying nothing? Sex. Disabil. 30, 381–393 (2012)

    Google Scholar 

  35. Healy, E., McGuire, B.E., Evans, D.S., Carley, S.N.: Sexuality and personal relationships for people with an intellectual disability. Part I: service-user perspectives. J. Intellectual Disabil. Res. 53(11), 905–912 (2009)

    Google Scholar 

  36. Creswell, J.W., Creswell, J.D.: Research design: Qualitative, Quantitative, and Mixed Methods Approaches, 5th edn. SAGE Publications Inc., Los Angeles (2018)

    Google Scholar 

  37. Greene, J.C.: Mixed Methods in Social Inquiry. Wiley, San Francisco (2007)

    Google Scholar 

  38. Cuskelly, M., Bryde, R.: Attitudes towards the sexuality of adults with an intellectual disability: parents, support staff, and a community sample. J. Intellectual Dev. Disabil. 29(3), 255–264 (2004)

    Google Scholar 

  39. Braun, V., Clarke, V.: Using thematic analysis in psychology. Qual. Res. Psychol. 3, 77–101 (2006)

    Google Scholar 

  40. Lincoln, Y.S., Guba, E.G.: Naturalistic Inquiry. Sage Publications Inc, Newbury Park (1985)

    Google Scholar 

  41. MacFarland, M. C., & Fisher, M. H. (2019). Peer-mediated social skill generalization for adolescents with autism spectrum disorder and intellectual disability. Exceptionality. Advance online publication

  42. Nichols, S., Blakeley-Smith, A.: “I’m not sure we’re ready for this…”: working with families towards facilitating healthy sexuality for individuals with autism spectrum disorders. Soc. Work Mental Health 8(1), 79–91 (2009)

    Google Scholar 

  43. Morawska, A., Walsh, A., Grabski, M., Fletcher, R.: Parental confidence and preferences for communication with their child about sexuality. Sex Educ. 15(3), 235–248 (2015)

    Google Scholar 

  44. Pariera, K.L.: Barriers and prompts to parent-child sexual communication. J. Family Commun. 16(3), 277–283 (2016)

    Google Scholar 

  45. Tonge, B.J.: The psychopathology of children with intellectual disabilities. In: Bouras, N. (ed.) Psychiatric and behavioural disorders in intellectual and developmental disabilities, pp. 93–112. Cambridge University Press, Cambridge (2007)

    Google Scholar 

  46. Sharpe, T.H.: Adult sexuality. Family J. 11(4), 420–426 (2003)

    Google Scholar 

  47. Ooi, K.L., Ong, Y.S., Jacob, S.A., Khan, T.M.: A meta-synthesis on parenting a child with autism. Neuropsychiatric Dis. Treat. 12, 745–762 (2016)

    Google Scholar 

  48. DiIorio, C., Pluhar, E., Belcher, L.: Parent-child communication about sexuality: a review of the literature from 1980 to 2002. J. HIV/AIDS Preven. Educ. Adolescents Children 54, 7–32 (2003)

    Google Scholar 

  49. Caldwell, K.: Dyadic interviewing: a technique valuing interdependence in interviews with individuals with intellectual disabilities. Qual. Res. 14(4), 488–507 (2014)

    Google Scholar 

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Funding

Partial funding for this study was provided by the Michigan State University College of Social Science Dissertation Completion Fellowship.

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Authors and Affiliations

  1. Department of Counseling, Educational Psychology and Special Education, Michigan State University, 620 Farm Lane, Room 176, East Lansing, MI, 48824, USA

    Rebecca R. Kammes

  2. Human Development and Family Studies, Michigan State University, East Lansing, MI, 48824, USA

    Sarah N. Douglas & Megan K. Maas

  3. Special Education, University of Hawaii-Manoa, Honolulu, USA

    Rhonda S. Black

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  1. Rebecca R. Kammes
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  2. Sarah N. Douglas
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Correspondence to Rebecca R. Kammes.

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Kammes, R.R., Douglas, S.N., Maas, M.K. et al. Parental Support for Sexuality Education and Expression Among Adults with an Intellectual Disability. Sex Disabil 38, 669–686 (2020). https://doi.org/10.1007/s11195-020-09659-8

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