Sexual Health Education for Youth with Disabilities: An Unmet Need

Abstract

Individuals with disabilities experience higher rates of mental, emotional, physical, and sexual abuse than those without disabilities. Children with disabilities are 3.4 times more likely to experience sexual abuse than their peers without disabilities. Although a variety of resources have been created to help improve the sexual health of people with disabilities, one area that is seriously lacking is access to sexual health information and education. Previous work has identified several barriers to providing sexual health education to adolescents and youth with disabilities, including lack of teacher preparation, lack of teacher knowledge that leads to fear, concern, and anxiety, parental anxiety and fear, the lack of valid and reliable sexual health education materials for students with disabilities, and the sexuality of students with disabilities viewed as deviant. This chapter will review those issues and discuss methods to improve sexual health education for youth with disabilities.

1. Introduction

Sexual health is part of the human experience, yet it is often ignored, especially regarding students with disabilities [1, 2, 3]. Sexual health education for people with disabilities is important to help and ensure the capacity of each individual to make informed and educated choices regarding personal safety, developing and maintaining healthy relationships, and understanding how to maintain sexual health and hygiene. The application of self-determination skills plays an integral role in the ability of students with disabilities to attain sexual health [4, 5, 6, 7, 8].

Educators are fearful and anxious when they attempt to educate students with disabilities (SWD) about their sexual health [3, 5, 6]. There are numerous and valid reasons for this fear and anxiety. General and special educators report not feeling qualified to teach sexual health education, fear of repercussions from administration, questions over obtaining parental consent and liability, a lack of professional knowledge, concern that they will do more harm than good, and a lack of awareness on how to help a student develop a positive sexual identity [9, 10, 11, 12, 13]. This discomfort originates in cultural taboos, rules, and restrictions embedded in school and state policy, and an overall lack of preparation. Figure 1 outlines critical facts regarding the sexual health of individuals with disabilities (IWD).

Figure 1.

Facts regarding sexual health of individuals with disabilities (IWD) [1, 2, 3, 6, 14, 15, 16, 17, 18].

2. Barriers to sexual health education for SWD

Over the last decade, there has been growing acknowledgment of the need for sexual health education for SWD, especially in the United States [4, 7, 8, 15, 19]. However, researchers have identified several existing barriers that have made providing this education difficult [10, 11, 12, 13, 16, 19]. First and foremost would be the social and political controversy that exists in the United States over comprehensive sexual health education (CSE) for all students, much less SWD. Funding for school-based sexual health education programs is only provided for programs that are abstinence-based, despite research demonstrating that CSE programs that cover safer sex methods to prevent sexually transmitted infections, issues of consent, and methods of preventing pregnancy are more effective in reducing rates of adolescent sexual activity, pregnancy, and sexually transmitted infections [3, 19, 20, 21, 22].

Additional barriers exist specifically in providing sexual health education to SWD. The primary barriers that researchers have identified include—the sexuality of SWD viewed as deviant, the lack of valid and reliable sexual health education materials for students with disabilities, parental anxiety and fear, lack of teacher preparation, and lack of teacher knowledge that leads to fear, concern, and anxiety [19].

2.1 Views of sexuality of IWD as deviant

A key barrier to providing sexual health education to SWD is the view that IWD is asexual or that sexuality for IWD is abnormal or deviant [8, 23]. IWD finds that they are often portrayed as having libidos that are uncontrollable, particularly those with intellectual disabilities [24, 25]. When sexual health education is provided to IWD, it is primarily focused on preventing abuse or pregnancy, and generally does not discuss relationships or entertain the idea that IWD might enter into sexual relationships for pleasure [26, 27, 28]. Finally, when sexual health education is provided to IWD, it is typically only presented as heterosexual sexual health information. IWD can present as LGBTQ+, just as nondisabled individuals can, and they are entitled to sexual health education on those issues. Caregivers have reported homosexual behaviors as experimentation [29], and individuals with intellectual disabilities reported confusion about what it means to be gay and having questions about LGBTQ+ individuals, indicating a need for clearer education [30].

2.2 Lack of valid and reliable sexual health education materials for SWD

Materials to provide sexual health education to SWD generally lack reliability and validity, and when used, they are not implemented with fidelity [6, 31]. Materials that are promoted to provide sexual health education for SWD sometimes are more focused on the students’ disabilities than actually providing the needed information regarding sexual health [32]. Other researchers have attempted making adaptations and modifications to existing sexual health curricula using methods, such as Universal Design for Learning principles [33]; however, since most prepared curricula rely heavily on written materials, adapting these for SWD who have limited literacy or are nonverbal will be extremely difficult, and again, will lack validity and reliability.

2.3 Parental anxiety and fear

A key component in providing sexual health education to SWD is parental consent and support. Many parents of SWD either believe their children do not require sexual health education because they view their child as an asexual being or they simply have fears and anxiety about their child engaging in sexual activity [9, 10, 11, 34, 35, 36, 37, 38]. In discussing their own fears about their child engaging in sexual activity and how to properly educate their child on sexual health matters, parents will often voice views that contradict other views. In some cases, parents state that they do not know enough to be able to properly provide sexual health education to their child with a disability [39], while in other studies, they clearly indicate a preference for being the primary providers of sexual health information to their child [37]. In cases where parents do provide information, IWD often reports that the information is provided in late adolescence or adulthood and is focused on avoiding pregnancy, sexually transmitted infection, or abuse, and that they need more information on how to establish and maintain healthy sexual relationships with others [38]. Parents need to be provided information on how to teach their children with disabilities about sexual health and what the proper information is to teach and when it should be taught [40].

2.4 Lack of teacher preparation and teacher knowledge

Teachers receive a great deal of training to teach content in a number of areas, but sexual health is typically not one of them. When asked about their comfort levels to provide sexual health education in general, teachers report feeling unprepared and having little to no formal training to do so [6, 8, 41, 42]. This becomes more acute when teachers are asked to provide sexual health education to students with disabilities. Even special educators, trained to provide education to SWD, report feeling unprepared to provide sexual health education to those students while acknowledging the necessity of the material [43].

This lack of preparation leads to low rates of teacher knowledge about the necessary components of comprehensive sexual health education and how to teach it to SWD, as well as anxiety and fear about teaching the content to SWD [44]. Studies have found teachers are afraid to teach sexual health education in the general education setting, fearing parental responses and lack of support from the administration [41, 45]. These fears intensified when examining teaching sexual health education to SWD [11]. Instructors have reported feeling that family members do not want sexual health information provided to their child with a disability until the child acts out in some sexual manner or shows interest in a relationship, then the professionals feel they are responding in only a reactionary way, not educating [46].

3. Issues in sexual health education for IWD worldwide

These barriers outlined in the sections above are not unique to the United States or the European Union. While some parts of the world may have introduced comprehensive sexual health education earlier than others, the concept is now worldwide. Additionally, recognition of the need to educate IWD about sexual health is also widespread and is being researched in many countries outside of the United States and Europe. Typically, researchers find some of the same barriers in African and Asian countries that have been demonstrated previously, such as the contradiction between parents’ desire to teach children sexual health education themselves and their ability to do so [36, 37]. Researchers in countries as widespread as Canada, Ghana, and China report that sexual health education for IWD is limited in those countries by the typical belief that IWD is asexual and do not need information regarding sexual practices [47, 48, 49]. Additionally, cultural and religious beliefs in many countries make comprehensive sexual health education difficult, as it would not be accepted to discuss sexual intercourse outside of marriage, birth control, or topics related to LBTQ+ relationships, and in some cultures even discussing sex at all is unusual [36, 47, 48]. However, it is encouraging that researchers are examining the need for sexual health education for IWD in countries worldwide and how parents, caregivers, and professionals are addressing the need within their own cultural and religious landscapes.

4. The need for sexual health education

Sexual health education includes the teaching of issues relating to human sexuality including human sexual anatomy, sexual reproduction, sexual intercourse, or other sexual activity, reproductive health, emotional relations, reproductive rights and responsibilities, abstinence, and birth control [3, 50]. Common avenues for sexual health education are parents or caregivers, formal school programs, and public health campaigns.

Educating IWD about sexual health issues is critical for their own personal health, safety, and because as with any individual, they are entitled to self-agency to make decisions about their own bodies. When working with IWD, we call this concept self-determination. Self-determination is a life goal for persons with disabilities. It is a set of attitudes and skills that allow a person to care for themselves and carve out goals to achieve as much independence as possible. Self-determination is essentially the ability of a person to be responsible for their life. The components of self-determination include: self-awareness and self-awareness; goal setting and attainment skills; independence, risk-taking, and safety skills; self-observation, evaluation, and reinforcement; self-instruction, self-advocacy and leadership skills; internal locus of control; and positive attributions of efficacy [51].

The teaching of sexual health to SWD is not typically included in the curriculum of self-determination. However, learning about sexuality embodies the very core of self-determination. While many of the self-determination components have been incorporated into the curriculum for SWD since the 1990s, sexual health has not been directly included [8, 52]. It is easy to deny SWD opportunity and access to sexual health education if it is assumed that students will generalize their self-determination strategies to include sexual health. Educators understand that the generalization of skills and strategies must often be explicitly taught to students with disabilities [53]. Educators need to connect sexual health with self-determination for SWD.

5. Potential solutions to improve sexual health education for IWD

While early research was focused on spotlighting the need for sexual health education for IWD, more recent areas of research have focused on how this education can be effectively delivered. This area of research is much more recent and still relatively recent. There appear to be two primary methods of delivering this education to IWD: preparing parents/caregivers of IWD to provide sexual health education and preparing educators to provide sexual health education. These do not have to be separate tracks of preparation. Even if educators will be providing sexual health education, it is important to also prepare parents/caregivers, because they need to have a perception and understanding of their child with a disability as an individual who is a sexual being with needs and feelings [8].

5.1 Preparing parents

It is recognized that the most effective means of proving sexual health education to SWD involve partnerships between parents/caregivers and education professionals [40, 48, 49]. This will be especially true in cultures in which parents prefer to be the main provider of sexual health information to their children, but perhaps are unsure of what information to provide or when [37]. Additionally, collaborating with parents/caregivers on functional life skills that students will need as they transition into adult life is already a recognized evidence-based practice [51, 52], so including sexual health education along with the discussion on job skills and independent living may make it a more comfortable conversation for parents to have with educators.

Several studies have piloted workshops or education programs educators can use to prepare parents/caregivers to provide sexual health education to their children with disabilities [34, 40, 54, 55, 56]. These studies are not limited to the United States and Europe, but worldwide, and all have demonstrated that when parents participate in preparation programs, they gain a greater appreciation of the need to provide sexual health education to their child and gain knowledge on how to provide that education themselves. The modalities of these programs vary (online, booklets, in-person groups), but one study conducted in Iran demonstrated that training conducted with mothers in group settings was more effective than via other modalities [56]. Another set of researchers is currently piloting a full curriculum that can be used to lead in-person trainings with parents to prepare them to comfortably provide sexual health education to their children with disabilities [57]. This research will further support collaboration between parents and professionals.

5.2 Preparing teachers

A significant barrier to teaching sexual health to students with disabilities is the teacher’s discomfort with the topic and a general lack of pre-service and/or in-service preparation [6, 9, 10]. The only way to move through this barrier is to have the teacher become comfortable with the uncomfortable. Below, we will provide an example from our own experience as teacher educators that address this issue.

To start this process, sexual health for students with disabilities was added to special education teacher education coursework. One course within the teacher education program was identified by the program coordinator as appropriate for this project. The course included content on self-determination, transition, and methods for teaching students with disabilities in secondary schools. The course was positioned in the program during the last semester of coursework prior to internship (student teaching) with 25–30 students typically enrolled. Students in the course completed their teacher education program as a soft cohort, meaning most of the students took their courses together. All students took at least one course with the cohort prior to this course. The fact that students were well known to each other was an important consideration in selecting the course. This allowed students to feel safe and comfortable discussing sexuality and expressing their concerns. It is important to note that in this configuration the professor was often the only person in the room that was unknown to the students.

Sexual health is a topic that is presented in the course syllabus, but it is always placed at the end of the semester. This allows time for the professor to create a safe environment and to build rapport with the students. When students are asked to look through the course topics and talk about what excites them and what concerns them, sexual health is consistently mentioned as a concern. It is never a topic the student teachers are excited to learn about. There is anxiety regarding the topic. This informal data point is important in terms of building community and preparing for the topic.

To prepare pre-service teachers for instruction in sexual health, the course included short mini-lectures reviewing adolescent development. Additionally, pre-service teachers completed a series of community and school observations focusing on body language, touching, sexual innuendo, followed by a review of media and music that adolescents find engaging.

The course focused on strategies teachers could use to develop self-determination and student engagement in the individualized education program (IEP) and transition process. This section of the course was essential, as it developed specific skills, and perhaps equally important was the development of a teacher’s disposition to promote self-determination development in all students with disabilities [58, 59].

Observations combined with instruction and skill development in self-determination served as precursors to instruction in sexual health. By this time in the course, pre-service teachers and the professor had formed a strong and comfortable relationship. Further, pre-service teachers had enough practicum and substitute teaching hours to have encountered sexual health situations that they had felt unprepared to address. This confluence of professional experiences reduced the pre-service teachers’ anxiety about sexual health as a course topic.

To provide the sexual health content, the professor of the course collaborated with a health educator, who had training in sexual health and special education. The health educator worked within the College of Education and was familiar with the teacher education program. This model demonstrated to the pre-service teachers that collaboration and partnerships can be an effective approach when teaching topics in which they lacked expertise. Collaboration with the health educator bridged the knowledge between special education and sexual health education. Instruction in sexual health was provided by the health educator during a guest lecture and was divided into two sections. Initially, pre-service teachers were introduced to the topic through a more traditional lecture presentation merging the topic of sexuality in relation to self-determination for students with disabilities. After the lecture section, the pre-service teachers participated in a structured activity that included six real-life dilemmas practicing special education teachers had encountered. This activity was designed to develop teacher confidence in the topic.

A class activity entitled the “Real Life Dilemma” was introduced. The class was divided into six groups with each group receiving one unique dilemma. Each dilemma was an actual situation that had occurred locally or nationally within the past 6 years in the United States. The class was given 30 min to review a dilemma and make a decision (i.e., what action will you take?). Each group shared with the class their dilemma, the key issues discussed, and their decision. After the conclusion of each such discussion, the health educator shared the actual outcome with the class. The actual outcome was then discussed and evaluated in a short debriefing of the dilemmas. The discussions were led by both the health educator and the course professor. The following questions were posed during the debriefing of the activity:

• Why is this issue important?

• How does this issue and the outcome influence you as a teacher?

• What is your position on the issue? Why?

• Does your response and the actual outcome promote self-determination?

Pre-service teachers responded to the dilemmas within a positive self-determination framework in 8 out of 12 responses (67% of the responses were positive). In four instances, pre-service teachers’ responded with a solution that did not promote self-determination for students with disabilities. The actual outcomes of the six dilemmas were situations involving practicing special education teachers. Those teachers took action within a positive self-determination framework in 4 out of the 6 dilemmas (67% of the responses were positive). For both groups the responses that did not promote self-determination were ambivalent, or safe responses, perhaps reflecting the anxiety teachers feel when approaching sexual health topics.

Pre-service teacher responses favored solutions promoting self-advocacy, self-awareness, and self-efficacy. These are considered more internally focused components of self-determination. These components are not directly taught, but rather they must be facilitated over a long period of time and in a variety of situations. Teachers whose responses were the actual outcomes in this project used decision-making and goal setting as the favored self-determination components. Interestingly, pre-service teachers in the course focused their responses more on the student-centered components of self-determination, whereas, practicing teachers focused more on student thinking and planning. These components could be directly taught. Most importantly, self-determination components were strongly represented throughout the dilemmas in terms of how teachers and students should solve dilemmas related to sexual health for students with disabilities.

6. Conclusions

Great advances have been made in the last two decades in teaching sexual health education to individuals with disabilities and this means we are making advances toward recognizing IWD as self-determined individuals with autonomy and rights over their bodies. But while we have done much to illuminate the need for sexual health education for IWD and identify existing barriers, our next steps must be in researching the most effective ways to provide it. Current research indicates that we should take a two-pronged approach: prepare both parents and educators to work together and be able to provide knowledgeable, appropriate sexual health education to students with disabilities.

Acknowledgments

The authors wish to thank Anna Treacy, Ph.D. for the passion and inspiration she gave us as we were developing this work.

Conflict of interest

The authors declare no conflict of interest.