Advertisement

Archives of Sexual Behavior

, Volume 48, Issue 8, pp 2605–2615 | Cite as

Sexual and Relationship Interest, Knowledge, and Experiences Among Adolescents and Young Adults with Autism Spectrum Disorder

  • Nancy C. Cheak-ZamoraEmail author
  • Michelle Teti
  • Anna Maurer-Batjer
  • Karen V. O’Connor
  • Jena K. Randolph
Original Paper

Abstract

Little research exists to describe sexual and romantic relationships among adolescents and young adults with autism spectrum disorder (ASD) from their perspectives. Sexuality and intimacy are developmentally important and influence health and quality of life for all adolescents and young adults, including those with ASD. This study explored and compared the sex and relationship experiences of 27 adolescents and young adults with ASD (males = 20). Adolescents and young adults participated in semi-structured interviews to explore this topic. Using theme analysis, we uncovered four thematic categories: (1) interest in relationships, (2) ideal partners, (3) realities of adolescent and young adult relationships, and (4) advice about sex and relationships. Although many adolescents and young adults expressed wanting a relationship, few reported having partners. Among those that did, their actual relationships rarely met ideals. Most adolescents and young adults talked with parents and friends but not healthcare providers about sex and relationships. All adolescents and young adults described the need for additional education. Adolescents and young adults express the need for education that covers basic safety and sexual health topics as well as social/relationship skills building and courtship modeling. These findings can inform the design of tailored sexual health intervention. Future research should examine specific issues related to sexuality from the adolescents’ and young adults’ perspectives.

Keywords

Autism Adolescents/youth Young adults Sexuality Intimacy 

Notes

Acknowledgments

This study was funded 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. The US Army Medical Research Acquisition Activity, 820 Chandler Street, Fort Detrick, MD 21702-5014 is the awarding and administering acquisition office.

Compliance with Ethical Standards

Conflict of interest

The authors declare that they have no conflict on interest.

References

  1. Alexander, S. C., Fortenberry, J. D., Pollak, K. I., Bravender, T., Davis, J. K., Ostbye, T., … Shields, C. G. (2014). Sexuality talk during adolescent health maintenance visits. Pediatrics, 168, 163–169.  https://doi.org/10.1001/jamapediatrics.2013.4338.CrossRefGoogle Scholar
  2. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing.CrossRefGoogle Scholar
  3. Barnett, J. P., & Maticka-Tyndale, E. (2015). Qualitative exploration of sexual experiences among adults on the autism spectrum: Implications for sex education. Perspectives on Sexual and Reproductive Health,47, 171–179.  https://doi.org/10.1363/47e5715.CrossRefPubMedGoogle Scholar
  4. Billstedt, E., Gillberg, I. C., & Gillberg, C. (2011). Aspects of quality of life in adults diagnosed with autism in childhood: A population-based study. Autism,15, 7–20.  https://doi.org/10.1177/1362361309346066.CrossRefGoogle Scholar
  5. Bottema-Beutel, K., Mullins, T. S., Harvey, M. N., Gustafson, J. R., & Carter, E. W. (2016). Avoiding the “brick wall of awkward”: Perspectives of youth with autism spectrum disorder on social-focused intervention practices. Autism,20, 196–206.  https://doi.org/10.1177/136236131557488.CrossRefPubMedGoogle Scholar
  6. Brown-Lavoie, S. M., Viecili, M. A., & Weiss, J. A. (2014). Sexual knowledge and victimization in adults with autism spectrum disorders. Journal of Autism and Developmental Disorders,44, 2185–2196.  https://doi.org/10.1007/s10803-014-2093-y.CrossRefPubMedPubMedCentralGoogle Scholar
  7. Byers, E. S., Nichols, S., & Voyer, S. D. (2013). Challenging stereotypes: Sexual functioning of single adults with high functioning autism spectrum disorder. Journal of Autism and Developmental Disorders,43, 2617–2627.  https://doi.org/10.1007/s10803-013-1813-z.CrossRefPubMedGoogle Scholar
  8. Byers, E. S., Nichols, S., Voyer, S. D., & Reilly, G. (2012). Sexual well-being of a community sample of high-functioning adults on the autism spectrum who have been in a romantic relationship. Autism,17, 418–433.  https://doi.org/10.1177/1362361311431950.CrossRefPubMedGoogle Scholar
  9. Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. London: Sage Publications.Google Scholar
  10. Cheak-Zamora, N. C., & Teti, M. (2014). “You think it’s hard now…It gets much harder for our children”: Youth with autism and their caregiver’s perspectives of health care transition services. Autism,19, 992–1001.  https://doi.org/10.1177/1362361314558279.CrossRefPubMedGoogle Scholar
  11. Cheak-Zamora, N. C., Teti, M., & First, J. (2015). ‘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. Journal of Applied Research in Intellectual Disabilities,6, 548–560.  https://doi.org/10.1111/jar.12150.CrossRefGoogle Scholar
  12. Cheak-Zamora, N. C., Teti, M., Maurer-Batjer, A., & Koegler, E. (2017). Exploration and comparison of adolescents with autism spectrum disorder and their caregiver’s perspectives on transitioning to adult health care and adulthood. Journal of Pediatric Psychology,42, 1028–1039.  https://doi.org/10.1093/jpepsy/jsx075.CrossRefPubMedGoogle Scholar
  13. Coskun, M., & Mukaddes, N. M. (2008). Mirtazapine treatment in a subject with autistic disorder and fetishism. Journal of Child and Adolescent Psychopharmacology,18, 206–209.  https://doi.org/10.1089/cap.2007.0014.CrossRefPubMedGoogle Scholar
  14. Cridland, E. K., Jones, S. C., Caputi, P., & Magee, C. A. (2014). Being a girl in a boys’ world: Investigating the experiences of girls with autism spectrum disorders during adolescence. Journal of Autism and Developmental Disorders,44, 1261–1274.  https://doi.org/10.1007/s10803-013-1985-6.CrossRefPubMedGoogle Scholar
  15. Dewinter, J., Van Parys, H., Vermeiren, R., & Van Nieuwenhuizen, C. (2017). Adolescent boys with an autism spectrum disorder and their experience of sexuality: An interpretative phenomenological analysis. Autism,21, 75–82.  https://doi.org/10.1177/1362361315627134.CrossRefPubMedGoogle Scholar
  16. Dewinter, J., Vermeiren, R., Vanwesenbeeck, I., Lobbestael, J., & Van Nieuwenhuizen, C. (2015). Sexuality in adolescent boys with autism spectrum disorder: Self-reported behaviours and attitudes. Journal of Autism and Developmental Disorders,45, 731–741.  https://doi.org/10.1007/s10803-014-2226-3.CrossRefPubMedGoogle Scholar
  17. Dewinter, J., Vermeiren, R., Vanwesenbeeck, I., & Van Nieuwenhuizen, C. (2013). Autism and normative sexual development: A narrative review. Journal of Clinical Nursing,22, 3467–3483.  https://doi.org/10.1111/jocn.12397.CrossRefPubMedGoogle Scholar
  18. Dewinter, J., Vermeiren, R., Vanwesenbeeck, I., & Van Nieuwenhuizen, C. V. (2016). Parental awareness of sexual experience in adolescent boys with autism spectrum disorder. Journal of Autism and Developmental Disorders,46, 713–719.  https://doi.org/10.1007/s10803-015-2622-3.CrossRefPubMedGoogle Scholar
  19. Dozier, C. L., Iwata, B. A., & Worsdell, A. S. (2011). Assessment and treatment of foot-shoe fetish displayed by a man with autism. Journal of Applied Behavior Analysis,44, 133–137.  https://doi.org/10.1901/jaba.2011.44-133.CrossRefPubMedPubMedCentralGoogle Scholar
  20. Dworkin, S. L. (2012). Sample size policy for qualitative studies using in-depth interviews [Editorial]. Archives of Sexual Behavior,41, 1319–1320.  https://doi.org/10.1007/s10508-012-0016-6.CrossRefPubMedGoogle Scholar
  21. Dyer, K., & das Nair, R. (2013). Why don’t healthcare professionals talk about sex? A systematic review of recent qualitative studies conducted in the United Kingdom. Journal of Sexual Medicine,10, 2658–2670.  https://doi.org/10.1111/j.1743-6109.2012.02856.x.CrossRefPubMedGoogle Scholar
  22. Finer, L. B., & Philbin, J. M. (2013). Sexual initiation, contraceptive use, and pregnancy among young adolescents. Pediatrics,131, 886–891.  https://doi.org/10.1542/peds.2012-3495.CrossRefPubMedPubMedCentralGoogle Scholar
  23. Finer, L. B., & Philbin, J. M. (2014). Trends in ages at key reproductive transitions in the United States, 1951–2010. Women’s Health Issues,24, e271–e279.  https://doi.org/10.1016/j.whi.2014.02.002.CrossRefPubMedPubMedCentralGoogle Scholar
  24. Gilmour, L., Schalomon, P. M., & Smith, V. (2012). Sexuality in a community based sample of adults with autism spectrum disorder. Research in Autism Spectrum Disorders,6, 313–318.  https://doi.org/10.1016/j.rasd.2011.06.003.CrossRefGoogle Scholar
  25. Gilmour, L., Smith, V., & Schalomon, M. (2014). Sexuality and ASD: Current state of research. In V. B. Patel, V. R. Preedy, & C. R. Martin (Eds.), Comprehensive guide to autism (pp. 569–584). New York: Springer.CrossRefGoogle Scholar
  26. Guest, G., MacQueen, K. M., & Namey, E. E. (2012). Applied thematic analysis. Thousand Oaks, CA: Sage Publications.CrossRefGoogle Scholar
  27. Hagner, D., Kurtz, A., May, J., & Cloutier, H. (2014). Person-centered planning for transition-aged youth with autism spectrum disorders. Journal of Rehabilitation, 80, 4–10.Google Scholar
  28. Hannah, L. A., & Stagg, S. D. (2016). Experiences of sex education and sexual awareness in young adults with autism spectrum disorder. Journal of Autism and Developmental Disorders,46(12), 3678–3687.  https://doi.org/10.1007/s10803-016-2906-2.CrossRefPubMedGoogle Scholar
  29. Hatton, S., & Tector, A. (2010). Focus on practice: Sexuality and relationship education for young people with autistic spectrum disorder—Curriculum change and staff support. British Journal of Special Education,37, 69–76.  https://doi.org/10.1111/j.1467-8578.2010.00466.x.CrossRefGoogle Scholar
  30. Kaehne, A., & O’Connell, C. (2010). Focus groups with people with learning disabilities. Journal of Intellectual Disabilities,14, 133–145.  https://doi.org/10.1177/1744629510381939.CrossRefPubMedGoogle Scholar
  31. Kellaher, D. C. (2015). Sexual behavior and autism spectrum disorders: An update and discussion. Current Psychiatry Reports,17, 562.  https://doi.org/10.1007/s11920-015-0562-4.CrossRefPubMedGoogle Scholar
  32. Kvale, S., & Brinkmann, S. (2009). InterViews: Learning the craft of qualitative research interviewing. Thousand Oaks, CA: SAGE Publications.Google Scholar
  33. Marriage, S., Wolverton, A., & Marriage, K. (2009). Autism spectrum disorder grown up: A chart review of adult functioning. Journal of the Canadian Academy of Child and Adolescent Psychiatry, 18, 322–328.PubMedPubMedCentralGoogle Scholar
  34. Mehzabin, P., & Stokes, M. A. (2011). Self-assessed sexuality in young adults with high-functioning autism. Research in Autism Spectrum Disorders,5, 614–621.  https://doi.org/10.1016/j.rasd.2010.07.006.CrossRefGoogle Scholar
  35. Pecora, L. A., Mesibov, G. B., & Stokes, M. A. (2016). Sexuality in high-functioning autism: A systematic review and meta-analysis. Journal of Autism and Developmental Disorders,46, 3519–3556.  https://doi.org/10.1007/s10803-016-2892-4.CrossRefPubMedGoogle Scholar
  36. Ruble, L. A., & Dalrymple, N. J. (1993). Social/sexual awareness of persons with autism: A parental perspective. Archives of Sexual Behavior,22, 229–240.  https://doi.org/10.1007/bf01541768.CrossRefPubMedGoogle Scholar
  37. Scientific Software Development. (2011). Atlas.ti (version 6.2). Berlin: Scientific Software Development.Google Scholar
  38. Shenton, A. K. (2004). Strategies for ensuring trustworthiness in qualitative research projects. Education for Information,22, 63–75.CrossRefGoogle Scholar
  39. Shogren, K. A., & Plotner, A. J. (2012). Transition planning for students with intellectual disability, autism, or other disabilities: Data from the National Longitudinal Transition Study-2. Intellectual and Developmental Disabilities,50, 16–30.  https://doi.org/10.1352/1934-9556-50.1.16.CrossRefPubMedGoogle Scholar
  40. Sperry, L. A., & Mesibov, G. B. (2005). Perceptions of social challenges of adults with autism spectrum disorder. Autism,9, 362–376.  https://doi.org/10.1177/1362361305056077.CrossRefPubMedGoogle Scholar
  41. Sullivan, A., & Caterino, L. C. (2008). Addressing the sexuality and sex education of individuals with autism spectrum disorders. Education & Treatment of Children, 31, 381–394.CrossRefGoogle Scholar
  42. Tullis, C. A., & Zangrillo, A. N. (2013). Sexuality education for adolescents and adults with autism spectrum disorders. Psychology in Schools.  https://doi.org/10.1002/pits.21713.CrossRefGoogle Scholar
  43. Visser, K., Greaves-Lord, K., Tick, N., Verhulst, F., Maras, A., & van der Vegt, E. (2015). Study protocol: A randomized controlled trial investigating the effects of a psychosexual training program for adolescents with autism spectrum disorder. BMC Psychiatry,15, 207.  https://doi.org/10.1186/s12888-015-0586-7.CrossRefPubMedPubMedCentralGoogle Scholar
  44. Wolfe, P. S., Condo, B., & Hardaway, E. (2009). Sociosexuality education for persons with autism spectrum disorders using principles of applied behavioral analysis. Teaching Exceptional Children, 42, 50–61.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  1. 1.Department of Health Sciences, School of Health ProfessionsUniversity of MissouriColumbiaUSA
  2. 2.Department of Special Education, College of EducationUniversity of MissouriColumbiaUSA

Personalised recommendations