We Need to Talk about It: Sexual Health and Students with ASD

This article originally appeared in START Connecting in March 2018. 

Navigating adolescence successfully is a difficult task for all children. During these years, children attain their sexual knowledge and develop their attitudes and values. The development of sexuality is critical because it is an important factor in bonding, pleasure, and relationships with others. For most children, learning how to deal with their changing bodies and blossoming sexuality happens in their daily environment. They gather knowledge and appropriate behaviors through a variety of sources, such as peers, parents, teachers, and media, simply by exposure. Children and adolescents with autism spectrum disorder (ASD) are unique in that they require extra care and attention during puberty, especially when it comes to their developing sexuality and sexual health.” (Chan & John, 2012, p. 306)

Autism spectrum disorder (ASD) is fundamentally characterized by difficulty with social interaction including challenges with understanding the most basic social behaviors. The social norms for negotiating and navigating friendships and romantic relationships can be especially difficult. Individuals with ASD may experience delays in social communication skills, but the onset of puberty and an increasing interest in sexuality is typically not delayed.

Developing romantic and sexual interests is a developmental milestone and many pre-adolescents (around 9-13) become romantically interested in others or develop crushes or fascinations, which coincides with the onset of puberty. Although many young people with ASD have the same desire for romantic relationships as their typically developing peers (Chan & John, 2012), research indicates that youth with ASD often have less sexual health knowledge than their peers (Mehzabin & Stokes, 2011). This is often due to lack of opportunities to interact with peers, less access to health education in school, or parental uncertainty about how to approach the topic. This lack of experience can make it hard for individuals with ASD to grasp the concept of public and private space, and may lead to inappropriate sexual behavior such as unwanted touching and masturbation, and undressing in public.

Sexual Health Education

Parents and educators should address sexual health education proactively. Hénault (2013) recommends that sexual health education for youth with ASD address the same basic content areas as other sexual health education programs but with adaptations to address the developmental age, experience, and unique needs of the youth. Core areas of emphasis should include public and private behavior, communication in healthy relationships, intimacy and love, boundaries and informed consent, and safety (e.g., age differences, exploitation, pornography). Sexual health education needs to be coordinated between the parents, educators, medical providers, and, when needed, a clinical provider such as a therapist trained in sexual health for individuals with developmental disabilities.

Parents are critical members of the team when addressing sexual health. Many parents report they wished they had introduced more sophisticated sexuality topics earlier (Holmes & Himle, 2014). However, they may be concerned about the appropriateness of the sexual health information delivered at school or unclear about what sexual health topics are appropriate to bring up with their children at what time. Encouraging parents to work with educators to ensure timely and appropriate sexual health education is critical to the health, safety, and social well-being of their child.

What Parents Need to Know

  • Start EARLY and be direct. Most experts agree that starting a few years before puberty (around age 10, or even earlier) is most helpful.
  • Sexual health education is not about sex, but about personal safety, self-knowledge, individual values, and social competence.
  • Before you can effectively communicate your values about sexuality to your children, you need to know what you believe and why. You are the main educators of sex for your child.
  • Be “askable” and ready. This means you should be prepared for any question or incident that involves your son or daughter’s sexuality. Answer questions simply and directly.
  • Understand the function of behaviors and work with your team to figure out ways to meet the needs of your child and teach appropriate behaviors (e.g. when and where).
  • Use the same teaching strategies that you have used to teach your children other skills, including visual schedules, checklists, videos, social facts, pictures of what is happening to their bodies, stories to predict what might occur, or specific terminology. Think of puberty as just another stage of development. Embrace it and move forward.
    (adapted from Toth, K, 2013)

What School Professionals Need to Know

  • Start EARLY. This means working with students and parents. Most experts agree that starting a few years before puberty (around age 10, or earlier) is most helpful.
  • Sexual health education is not about sex, but about personal safety, self-knowledge, individual values, and social competence.
  • Understand the Michigan Model of Health and your district policy and practice around health education.
  • Identify curriculum and strategies to assist your district health educator to adapt health education for students with developmental disabilities, and support the implementation of the strategies in your work with students.
  • Use the same teaching strategies that you have used to teach your students other skills, including visual schedules, visual supports, self-management systems, videos, social facts and social rules, stories to predict what might occur, and specific information.
  • Work within your peer to peer support program to help students with ASD learn about relationships, boundaries, and social rules.
  • When problem situations arise, address them immediately, and make sure administrators and staff understand the issues and the plan.
  • Identify useful resources and share them with other school staff and parents.

“By starting early, providing positive messages about sexuality….individuals with ASD will have the opportunity to develop a positive sexual self-view, build confidence and self-knowledge, avoid potentially dangerous situations for themselves and others, and seek the sexual well-being that best meets their needs and desires” (Byers, Nichols, Voyer, and Reilly (2013, p. 13).

References and Resources

Attwood, T, Henault, I., & Durbin, N. (2014). The Autism Spectrum, Sexuality, and the Law.  Philadelphia, PA: Jessica Kingsley Publishers.

Autism Speaks. Health Guide.

Baxlely, D. L., & Zendell, A. I. (2005). Sexuality across the lifespan for children and adolescents with developmental disabilities. An instructional guide for educators of individuals with developmental disabilities. U.S. Department of Health and Human Services Administration on Developmental Disabilities and the Florida Developmental Disabilities Council.

Chan, J. & John, R. (2012). Sexuality and sexual health in children and adolescents with autism. The Journal for Nurse Practitioners, 8, 306-314.

Cohen, M. R. (2011). ASD and internet crime. Asperger Center for Education and Training.

Davis, T. N., Machalicek, W., Scalzo, R., Kobylecky, A., Campbell, V., Pinkelman, S., . . . Sigafoos, J. (2016). A review and treatment selection model for individuals with developmental disabilities who engage in inappropriate sexual behavior. Behavior Analysis in Practice, 9(4), 389-402. 

Gerhardt, P.F., & Schulman, R. (2017).  Sexuality education is a necessity. Organization for Autism Research website.   

Hartman, D. (2013). Sexuality and Relationship Education for Children and Adolescents with Autism Spectrum Disorders. Philadelphia, PA: Jessica Kingsley Publishers.

Hénault, I. (2013). Sexual education for adolescents and young adults with autism spectrum disorder: Themes and adapted steps. Autism Advisor: Information and Tips About Autism Spectrum Disorders (ASD), No. 65, August, 2013.

Holmes, T. G., Himle, M. B. (2014). Brief report: Parent–child sexuality communication and autism spectrum disorders. Journal of Autism and Developmental Disorders, 44, 2964-2970.

King County. FLASH Curriculum.

Massachusetts Department of Public Health/Developmental Services. (2014). Healthy Relationships, Sexuality, and Disability: Resource Guide 2014 Edition. Description and links to curriculum resources on sexuality and disability including ASD.

Michigan Model for Health.

Monasterio E, Combs N, Warner L, Larsen-Fleming M, St. Andrews A, (2010). Sexual Health: An Ado­lescent Provider Toolkit. San Francisco, CA: Adolescent Health Working Group, San Francisco.

Special Learning website and resources. Puberty and Sex Ed.

START Project Sexual health module. Grand Valley State University Autism Education Center.

Travers, J., & Tincani, M. (2010). Sexuality education for individuals with autism spectrum disorders: Critical issues and decision-making guidelines. Education and Training in Autism and Developmental Disabilities, 45(2), 284-293. 

Tullis, C. A., & Zangrillo, A. N. (2013). Sexuality education for adolescents and adults with autism spectrum disorders. Psychology in the Schools, 50(9), 866-875. 

Vanderbilt University. Healthy bodies tool kit.

Veazey, S. E., Valentino, A. L., Low, A. I., McElroy, A. R., & LeBlanc, L. A. (2016). Teaching feminine hygiene skills to young females with autism spectrum disorder and intellectual disability. Behavior Analysis in Practice, 9(2), 184-189. 

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