Sexuality is a central component of socialization for all people and can play a major role in an individual’s overall self-identify and quality of life. However, the discussion and promotion of this area of adaptive and social functioning in individuals with autism spectrum disorder (ASD) is often avoided. Historically, children, adolescents, and adults with intellectual or developmental disabilities have been viewed as asexual beings at one end of the spectrum and as sexual deviants at the opposite end (Ailey, Marks, Crisp, & Hahn, 2003). Today, a number of myths continue to exist regarding sexuality and learners with ASD, such as persons with ASD have little or no interest in sexuality; persons with ASD are hypersexual; and persons with ASD are solely heterosexual. However, individuals with autism are sexual beings, have the same hormones and urges as their typically developing peers, and are faced with the same choices regarding sexuality as their peers. Therefore, similar to their neurotypical peers, individuals with ASD must receive education and training pertaining to sexuality issues, beginning in infancy and extending throughout their life span (Ailey et al., 2003).
Peter Gerhardt, EdD
Rebecca Schulman, PsyD, BCBA-D
If healthy sexuality is not promoted and supported, unhealthy and abusive forms of sexuality may result. More specifically, the failure to develop healthy sexuality through appropriate sexuality education can put individuals with ASD at risk for sexual abuse and exploitation, AIDS and other sexually transmitted diseases (STDs), unplanned and unwanted pregnancies, and misinformation (Ailey et al., 2003; McDaniels & Fleming, 2016). Further, individuals may suffer from mental disorders, such as anxiety, depression, and adjustment disorder, as well as impaired self-esteem (Evans & Conine, 1985). Additionally, Stokes, Newton, & Kaur (2007) found that individuals with ASD were more likely than their neurotypical peers to engage in inappropriate courting behaviors; to focus their attention on celebrities, strangers, colleagues, and exes; and to pursue their target for longer lengths of time (i.e., stalking).
There is a significant need for individualized, effective instruction for persons with ASD commensurate with each individual’s receptive and expressive abilities. Effective sexuality education is complicated for individuals with ASD by language and communication problems, as well as by social deficits associated with the disorder. Additionally, where as other teens serve as a primary information source available to neurotypical teens, this is not typically the case for individuals with ASD (Volkmar & Wiesner, 2003). As a result, this population is not often taught information related to sexuality in school or by family and friends, thus leading to little, if any, appropriate skill development.
What Topics to Cover
Once it is recognized that individuals with ASD need direct training related to sexuality, it is essential to consider what topics should be covered and how this information should be taught. Three basic goals for sexuality instruction include providing accurate information, developing individual values, and teaching appropriate social relationship skills. General topics should include public versus private behavior, appropriate versus inappropriate touching, proper names of body parts, personal boundaries/personal space, masturbation/private touching, avoidance of danger/abuse prevention, social skills and relationship building, dating skills, personal responsibility and values, etc. Specific topics will vary based on the individual’s age. When working with families who are reluctant to discuss human sexuality as it pertains to their son or daughter on the spectrum, a helpful topic to start with is that of personal safety/abuse prevention. As there are very few more important areas of intervention, family resistance to addressing safety issues is unusual. Plus, once that discussion starts, the door is (ideally) open to future discussions of more uncomfortable areas of sexuality.
Schwier and Hingsburger (2000) suggest that when a child is in preschool through elementary school, sexuality training may focus on boys versus girls, public versus private behavior and locations, basic facts about body parts, introduction to puberty and one’s changing body, introduction to menstrual care, and appropriate versus inappropriate touching. Once an individual is in middle school through high school and adulthood, sexuality education may include the following topics, if not already addressed: puberty and menstruation, hygiene, ejaculation and wet dreams, how to say “no,” masturbation, public restroom use, attraction and sexual feelings, relationships and dating, personal responsibility and family values, love versus sex, sexual preference, laws regarding sexuality, pregnancy, safe sex, birth control, STDS, etc. It is also important to discuss different types of relationships (e.g., friendships, romantic relationships, family relationships) and how one might act in different types of relationships.
When and How to Teach Sexuality Education
Although the topics included in sexuality education for learners with ASD may be very similar to those taught to their neurotypical peers, how this information is taught is likely to be quite different. Information should be delivered in a concrete, serious, calm, and supportive manner. Information should also be repeated to ensure mastery of the material. It is often helpful to break information or skills into smaller, more manageable parts (i.e., conduct a tasks analysis), and then essential to teach all steps of the task analysis in the correct order. Further, social rules about specific behaviors need to be explicitly taught (e.g., where and when it is appropriate to masturbate). Many individuals with ASD benefit from the use of behavioral skills training that includes direct instruction, role plays, immediate positive and corrective feedback, and probes for generalization in the natural environment. It is important to take advantage of “real life” to teach as well. For example, it is essential to instill boundaries of privacy and safety during daily routines, such as bath or shower time, getting dressed, family visits, etc. This will help to generalize the idea of privacy and safety within other settings. For instance, it is important that a child gets dressed in his/her private room, rather than in other public places of the house. Skills should also be monitored to make certain they are retained.
Many of the same techniques that are used to teach other skills to individuals with ASD can be used for sexuality education as well. These techniques might include picture schedules, shaping, chaining, cognitive rehearsal, personalized social stories, video-modeling, and discrete trial instruction. Instructors should consider using multiple instructional mediums. It is also essential that parents and educators think ahead and are proactive when teaching sexuality education. In order to ensure that sexuality education is most effective, adults should never wait until something inappropriate happens before teaching a specific skill. For example, training in appropriate menstrual care should start prior to the onset of a young woman’s first period, just as providing information about STDs and birth control should be given before an individual has sex for the first time. Communication and consistency are also important for successful sexuality education. An individual’s team (e.g., teachers, doctors, parents, therapists) should discuss strategies and progress to ensure consistency with language throughout the individual’s life, which can greatly impact the generalization of skills.
What to teach and how to teach this information should be individualized as much as possible. It is essential to identify what the child knows when determining where to start sexuality education. For example, one would want to know if the child has a good understanding of where each of his/her body parts are before starting to talk about what constitutes an “okay touch” versus what is considered a “not okay touch.” Another common example is when trying to teach the concept of public versus private. It is important to make sure the child understands the meaning of these words, public and private, before starting to use them in one’s teachings. Further, an understanding of a child’s expressive and receptive communication is essential in guiding instruction. Many times, children have stronger receptive language, meaning that they understand and comprehend what one is trying to convey, yet are not able to express his/her understanding to others. Of course this is not the case for all learners with ASD though. Additionally, it is helpful to consider what strategies have been the most successful previously to teach other skills and then use those strategies as a starting point (e.g., pictures, conversation, play, etc.).
It is also important for the instructor, whether a parent or professional, to consider how he/she feels about each of the topics surrounding healthy sexuality. For example, some adults have uncomfortable feelings when saying certain words or phrases. Additionally, many adults may not have had these types of conversations with their own parents, and thus, may struggle with what to say or how to say it. Each family should also consider their own values when exploring these topics with a child and help the child develop his/her own values as they grow up.
When taught proactively and effectively, sexuality education allows individuals with ASD to be safer, more independent, and more integrated into their own communities. Together, this results in a more positive quality of life for this population.
For more information contact Dr. Schulman at rschulman@behaviortherapyassociates.com or Dr. Gerhardt at PGerhardt@epicschool.org.
References
Ailey, S. H., Marks, B.A., Crisp, C., & Hahn, J.E. (2003). Promoting sexuality across the life span for individuals with intellectual and developmental disabilities. Nursing Clinics of North America, 38, 229-252.
Evans, J., & Conine T. (1985). Sexual habilitation of youngsters with chronic illness or disabling conditions. Journal of Allied Health, 14, 79–86.
McDaniels, B., & Fleming, A. (2016). Sexuality education and intellectual disability: Time to address the challenge. Sexuality and Disability, 34 (2), 215-225.
Stokes, M., Newton, N., & Kaur, A. (2007). Stalking, and social and romantic functioning among adolescents and adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 37, 1969-1986.
Schwier, K.M., & Hingsberger, D. (2000). Sexuality: Your sons and daughters with intellectual disabilities. Baltimore: Paul H. Brookes Publishing.
Volkmar, F.R., & Wiesner, L.A. (2003). Healthcare for children on the autism spectrum: A guide to medical, nutritional and behavioral issues. Bethesda, MD: Woodbine House.
