All children grow up. No diagnosis stops puberty in its tracks. No person, regardless of his/her abilities and needs, has immunity from the raging hormones of teenage years. Society has a tendency to label individuals with autism spectrum disorder (ASD) as being asexual, without sexual desire, or infantile. Although this is the case for some individuals—and there is nothing wrong with these orientations or characteristics—this is a sweeping generalization. More worrying though, is that people with ASD have been dubbed by some members of society as sexual predators. Ignorant views like these sadly encourage a system that denies sexual knowledge, expression, and safety.
Take a look at these important facts:
- Individuals with disabilities are assaulted at a rate nearly seven times those without disabilities (Schwartz and Robertson, 2019; Shapiro, 2018)
- 83% of women with disabilities will be sexually assaulted in their lifetimes (Shapiro, 2018)
- Primary contributing factors include a lack of sexual education and social isolation (Schwartz and Robertson, 2019)
Characteristics of many people with ASD, such as limited social awareness or poor communication skills, put them at particularly high risk for victimization. As a special educator and behavior analyst, every individual I’ve worked with craves personal connection and companionship, yet most never receive training in socio-sexual behaviors. I’ve therefore consolidated recommendations from sexual education research, published sexual education curriculum, and included my own experience into five ways to kickstart sexuality education (Couwenhoven, 2007; Gerhardt and Schulman, 2017; Schwartz and Robertson, 2019; Stein, 2010; Travers, 2018). You don’t need to wait until puberty to pull the plug—sexuality education starts now!
1. Name names
The foundation of body awareness and autonomy begins with knowing your body. Anatomy facilitates knowledge of private parts, which creates a stepping stone towards understanding public and private behaviors (Couwenhoven, 2007; Travers, 2018).
- Find out what your child knows. You can use a picture, dolls, or his/her own body to point to and label each part. Take note of what parts your child doesn’t know and use this as a starting point for teaching
- Use the scientific terms for body parts (breasts, penis, etc.). Children are never too young to learn about their bodies. Dr. Nienow says using anatomic terms is “correct”, “empowering”, and “unambiguous” (Nienow, n.d., Seven Steps to Teaching Children Body Autonomy). A childish term for a private part may unwittingly cause adults to dismiss warnings of abuse or unsafe behavior. In order to reduce confusion, use and reinforce the correct terms (Gerhardt and Schulman, 2017).
- If you change your child or help him/her dress, use this opportunity to name private parts
- Model correct language: “This is my penis.”
2. Privacy
As you teach body parts, also teach that there are private and public parts of your body. Private means they belong only to you (Stein, 2010). In her curriculum, Couwenhoven (2007) discusses teaching the following simple distinction: What is covered is private, what is uncovered is public. For example, brushing hair is a public activity, putting on underwear is not.
- Establish privacy routines within your house and abide by them. If you assist your child in the bathroom, close the bathroom door. Leave the room if possible as your child uses the toilet or turn around to indicate toileting is a private activity
- Establish language to communicate a need for privacy. This could be the phrase “I need privacy”, a picture, a symbol, an object, or whatever modality works best for your child. To reinforce the language of privacy, every adult who works with your child should be trained in how your child requests privacy
3. Give warnings, listen to responses
All too often in special education, we as teachers or parents jump in immediately to prompt, teach, or help. While immediate responsiveness may hasten skill acquisition or completion of routines, it may also increase your child’s acceptance of someone touching him/her without permission.
- Use warnings. Rather than jumping in, take a moment to state what you are going to do. “I’d like to help you zip up your sweater, can I do that?”; “I’m going to touch your hand, is that okay?” Wait for cues like a nod, a verbal “yes,” or a pause. As you engage in the prompt or action, wait and respond to your child’s cues. If possible (i.e. if not a routine vital to health or safety), stop at the first indication of discomfort such as pulling away, shaking his/her head, or vocalizing “no”
- Model language. Forced contact teaches children they do not control their own bodies (Couwenhoven, 2007). Instead of “Give grandma a hug,” model language of choice (“You can give grandma a wave, high-five, or a hug if you want.”). Do not require your child to give hugs, kisses, or any type of physical contact if he/she does not want to. If your child appears uncomfortable or upset with physical contact like a hug, respond accordingly by pulling away. You can model language like “It seems you don’t want a hug right now; that is okay,” or “Thank you for letting me know you needed space.” Grandma may be disappointed, but your child will learn cues to give and receive consent
4. Context matters
Jason, an adult with ASD, independently rode public transportation. One day he went on the back of the bus, sank down low in his seat, and began to masturbate. A child and her mother got on the bus and sat a few seats away from Jason. He was reported to the police and, when questioned, said he was doing it in “private”. When asked to explain, Jason described how you can touch yourself in private and private is when you can’t see anyone.
The example above illustrates a common problem when teaching children with ASD to discriminate between actions appropriate for public spaces and those reserved for private. Too often, inappropriate touching of oneself or others kickstarts the sexual education process. Rather than wait for a pattern of inappropriate behavior to become established, explicitly teach the concept of privacy and its relationship to context (Couwenhoven, 2007; Gerhardt and Schulman, 2017).
Most activities occur in designated spaces. You eat at the table, you sleep in your bedroom, you use the toilet in the bathroom. Teaching children where things occur can help prevent inappropriate sexualized behavior and potential assault.
- Teach context early on. Always change clothes in the bathroom or the bedroom. Be specific about who does and who does not help your child get dressed
- Touching private parts should only occur in the context of health or hygiene (Couwenhoven, 2007; Travers, 2018). Additionally, anything to do with health or hygiene should occur only in the contexts of a bathroom and medical facility or clinic with specific staff or personnel. Work with your child using examples and non-examples, visual aids, and role-plays to facilitate the understanding of who, what, and where
- Example:
- Appropriate: A doctor in a doctor’s office touches your genitals during a pap smear
- Inappropriate: A doctor touches your genitals in the car
- Example:
5. More openness, less shame
You may feel uncomfortable discussing sexuality education. While the discomfort is understandable, your child needs this information and will find other ways to access it if not through you. A study by Kelly, Crowley, and Hamilton (2009) investigating the experiences of relationships and sexuality of individuals with disabilities found that a majority of their participants received information on sex and romance through television shows and magazines.
- Establish open communication by answering questions and offering information. If your child feels certain topics are off-limits, he/she will become less likely to come to you for answers or help
- Get help. You don’t need to do this alone; there are sexual educators and classes specifically designed for individuals with ASD
It is natural to feel overwhelmed when thinking about how to guide your child in sexual education and safety. You can do this and there are tools out there to help you. Remember, sexual education is not a luxury for individuals with ASD; it is a necessity.
The Sexuality Information and Education Council of the United States (SIECUS). SIECUS provides a framework of comprehensive sexual education.
The American Association of Sexuality Educators, Counselors, and Therapists is a great first stop to find information, trainings, and a sexual educator near you https://www.aasect.org/.
References
Couwenhoven, T. (2007). Teaching children with Down syndrome about their bodies, boundaries, and sexuality: A guide for parents and professionals. Bethesda: Woodbine House.
Gerhardt, P., & Schulman, R. (2020, August 04). News & Events. Retrieved August 11, 2020, from https://researchautism.org/sexuality-education-is-a-necessity/
Kelly, G., Crowley, C. & Hamilton, C. (2009). Rights, sexuality, and relationships in Ireland: “It’d be nice to be kind of trusted.” British Journal of Learning Disabilities, 37(4)4, 308-315.
Nienow, S. (n.d.). Seven Steps to Teaching Children Body Autonomy. Retrieved August 06, 2020, from https://www.rchsd.org/2019/12/seven-steps-to-teaching-children-body-autonomy/
Schwartz, R. J., & Robertson, R. E. (2019). A review of research on sexual education for adults with intellectual disabilities. Career Development and Transition for Exceptional Individuals, 42(3), 148-157.
Shapiro, J. (2018, January 09). For Some With Intellectual Disabilities, Ending Abuse Starts With Sex Ed. Retrieved August 06, 2020, from https://www.npr.org/2018/01/09/572929725/for-some-with-intellectual-disabilities-ending-abuse-starts-with-sex-ed
Stein, S. (2010, March 16). Welcome to Teaching Parents Teaching Kids. Retrieved August 06, 2020, from http://teachingparentsteachingkids.info/index.php?option=com_content
Travers, J (2018) Sexuality Education. Austin: Pro-Ed.
Disclaimer: Any resemblance to actual persons, living or dead, or actual events is purely coincidental.
This article was featured in Issue 113 – Transitioning to Adulthood
