OARacle Newsletter

Sexuality is a part of every person’s life, and education about sexuality and sexual health is essential. However, this area is often overlooked for autistic individuals. The neglect of this topic and these skills can have consequences for the autistic individual’s quality of life, sexual health, and safety. As educators who have worked in clinical roles supporting autistic individuals for many years, we have witnessed the consequences of addressing these issues and of ignoring them.

Autistic individuals are going to engage in sexual behaviors at the same level and rate as those without disabilities. This is true regardless of how well they have been prepared for this aspect of life. These issues will arise whether the team has identified them as an area of need and regardless of whether instruction has been provided. In this piece, we offer some strategies for breaking down instructional barriers so that this content is adequately addressed.

Barriers to Providing Sex Education

Sexuality is a difficult and often uncomfortable topic for many people, including people who work with autistic individuals. It can be difficult for individuals in caretaking roles to approach these topics, implement lessons related to sexual knowledge, and even discuss sexual behaviors. Also, the expectations clinicians have about what might be required are often far worse than the actual task. Overall, sexuality is a complex and nuanced aspect of life for all of us; discomfort is common and confusion occurs even for those who do not have disabilities. These challenges are magnified for autistic individuals, and the caretaking and educational roles present unique challenges in this area of goal development.

Perhaps the greatest barrier is the lack of resources for educating individuals about sexuality. Very few curricular guides exist, and research in this area is almost nonexistent. Educators who wish to incorporate instruction in this area will find little to guide them.

Finally, stakeholder support may be minimal. Parents and family members may have difficulty identifying the need for their loved one to be instructed in sexual content. They may also feel protective of their loved one, and fear that information could actually increase risk (even though the opposite is true). They may also harbor misconceptions about the content that would be covered and fail to understand how protective such instruction can be.

The Need to Equip Clinicians to Address Sexual Health

Autistic individuals are at higher risk than other individuals for both victimization and engagement in sexual misconduct. In other words, understanding the parameters associated with engaging in sexual behavior is vital for self-preservation. For example, one cannot touch strangers in the community. The features of autism intersect with sexual situations in ways that may increase risk. For example, many autistic individuals have language and communication difficulties as a pre-existing challenge. This may limit clinicians’ abilities to check for comprehension of instructional material and identify the need for more information.

Autistic individuals generally get much less information about sex than other individuals. Neurotypical individuals learn formal information from didactic presentations in educational settings. Informal information is exchanged through peer groups and through access to various media sources. These sources are far less available or entirely missing for autistic individuals, and it is nearly impossible to know what the limits of their knowledge are.

Sexuality education encompasses far more than teaching about sex or sexual behavior. Other sexual knowledge skills that require attention include routine medical monitoring, reproduction and birth control, personal hygiene, menstrual care, online safety, gender identity and sexual orientation, and more. All these skills have multiple components; it may be that the individual masters one element of the skillset but does not acquire the most important skills. For example, in the context of breast examination, learning to examine the breast is less important than reporting new lumps. Individuals who cannot tolerate routine exams require special consideration. Additionally, sexual wellness checks may need to be initiated at earlier ages or at higher levels of frequency than for the general population. Building skills for tolerating assessments is essential.

Many of the skills that are included in sexual knowledge have safety implications. For example, learning online safety can prevent victimization. Understanding acceptable means of demonstrating interest in another person can prevent interactions with the law (e.g., for stalking). Many autistic individuals experience unfortunate incidents that might have been averted with prior knowledge, training, and safety protocols.

Top 10 Strategies for Addressing Sexual Knowledge

The following list is designed to provide practical strategies for incorporating instruction on sexual behavior and sexual health. Attention to these areas is part of comprehensive intervention, and is also linked to meaningful outcomes, including quality of life, autonomy, and sexual safety.

1. Prioritize quality of life, dignity, and autonomy for the individuals we serve. 
2. Do not avoid sexual behavior in program planning. 
3. Be clear and direct in your communication about sexual behavior, and be consistent in your use of language. For example, refer to body parts in accurate and consistent ways.  
4. Provide opportunities for repeated teaching and practice; this skill set cannot be learned in a one-time informational discussion. 
5. Take complex skills and present them in instructional segments. Do not try to teach all elements of sexual health at once. 
6. Focus on monitoring sexual health contexts (e.g., breast exams, reproductive health). 
7. Build skills in protecting privacy (e.g., closing the bathroom door). 
8. Recognize that choice, autonomy, and individualization should be paramount in these contexts. Staff should not impose their own values or norms. This is true across identity, sexual orientation, and product preferences (e.g., for feminine hygiene options). 
9. Be attentive to contextual factors. Think of how and where the skill needs to be demonstrated. (Masturbation in the bedroom is fine; masturbation in the park is not fine.) Consider the conditions under which the behavior can and/or must be demonstrated.  
10. Bring some lightness and levity to this area of curricular development. Supporting staff, clients, and stakeholders in this area requires a sense of humor and much grace.

Summary

Sexuality is an integral part of every human’s life and should be incorporated into service provision for autistic individuals. Barriers to this include the lack of resources available to guide such instruction, the complexity and range of the skills involved, and the sensitivities of staff and stakeholders regarding sexuality. It is essential that sexual behavior and health skills are included in comprehensive programming, as they enhance autonomy, reduce vulnerability, and improve quality of life.

For more information, check out Clinician’s Guide to Sexuality and Autism through OAR’s new lending library. 

Dr. Mary Jane Weiss, Ph.D., BCBA-D, LABA, is the dean of the Institute for Applied Behavioral Science and director of the Ph.D. program in applied behavior analysis (ABA) at Endicott College. She has worked in the ABA and autism field for 38 years. Her clinical and research interests include defining best practice and humane ABA techniques, integrating compassionate care and cultural responsiveness into ABA service delivery, exploring ways to enhance the ethical conduct of practitioners, training staff to be optimally effective at instruction and collaboration, and maximizing family members’ expertise and adaptation. She serves on OAR’s Scientific Council as well as other boards.

Dr. Natalie Driscoll, Ph.D., BCBA-D, LABA, works with adolescents on the autism spectrum preparing for adulthood at Melmark New England. She is an adjunct professor at Endicott College and SUNY Empire. She is a board-certified behavior analyst – doctoral level (BCBA-D) and licensed applied behavior analyst (LABA) in Massachusetts. She has experience with multiple populations including supporting people on the autism spectrum, survivors of acquired brain injuries, and people with intellectual and developmental disabilities across the lifespan. Her research interests include safety skill instruction, meaningful goal development, and adult services.

Dr. Jessica Cauchi, BCBA-D, CPBA-AP, is a behavior analyst who has worked with people on the autism spectrum for over 20 years and an assistant professor at Brock University in Canada. She received her Ph.D. in applied behavior analysis from Endicott College and is a doctoral-level board-certified behavior analyst (BCBA-D), as well as a certified progressive behavior analyst – autism professional (CPBA-AP). Dr. Cauchi is interested in research and clinical practice in curriculum development and effective teaching practices in sexuality skills for persons on the autism spectrum, meaningful programming, rapport and assent, and progressive ABA.