Abstract
Human sexuality encompasses aspects of physiology and emotions. The need for sociosexuality education for individuals with developmental disabilities (DD) is widely acknowledged; yet, there is little known about what topics of sexuality are presented. This review identified curricular content used in comprehensive, commercially available sexuality curriculum for individuals with DD. Results indicated that biological aspects such as anatomy and physiology were taught in all the curriculums; however, issues related to culture and society were less frequently present. The need for specific sexuality content is discussed as well as future implications.
Curricular Sociosexuality Content for Individuals With Developmental Disabilities (DD)
Sexuality is part of being human, and a basic right (Saxe & Flanagan, 2014). For individuals with DD, this basic human right may be restricted. As a result, individuals with DD may lack access to opportunities to express their sexuality and/or establish relationships. If the individual with DD is not his or her own legal guardian, he or she may have to rely on others for critical decisions including those related to sexuality (Guttmacher Institute, 2015). Caregivers may not be aware of the individual’s desire to engage in social/sexual relationships or be unwilling to assist persons with DD due to a variety of issues including logistics and/or attitudinal barriers (Pownall, Jahoda, & Hastings, 2012). The attitudes of others toward sexuality and disability has a great bearing on support for the expression of sexuality of individuals with DD (Brodwin & Frederick, 2010; Saxe & Flanagan, 2014). When issues of sexuality interface with disability, individuals with DD still are often viewed as perpetual children, asexual, oversexed, or lacking in self-control (Balan, 2001; Barnard-Brak, Schmidt, Chesnut, Wei, & Richman, 2014; Rohleder, 2010). Attitudes toward sexuality also differ for genders; women are viewed as sexually innocent, whereas men as more sexually motivated (Gilmore & Chambers, 2010; Young, Gore, & McCarthy, 2012).
In spite of these misconceptions, individuals with disabilities report wanting to engage in sexual/romantic relationships and know about sexuality (Saxe & Flanagan, 2014; Stokes & Kaur, 2005; Wissink, van Vugt, Moonen, Stams, & Hendriks, 2015). However, individuals with DD have little knowledge about contraception, often are unaware of sexually transmitted diseases (STDs), and/or how to take care of their own sexual health such as getting regular physical checkups (Saxe & Flanagan, 2014). In addition, there often are issues related to poor social behaviors and knowledge of appropriate time and place for sexual behaviors (Sullivan & Caterino, 2008). For males, inappropriate knowledge about how to masturbate and the time and place for masturbation often is an issue (Cambridge, Carnaby, & McCarthy, 2003). There are also often problems with the “hidden curriculum” or the unspoken but commonly known rules that govern behavior in environments (e.g., interpreting interpersonal cues that contact with a person is unwanted; Post, Storey, Haymes, Campbell, & Loughrey, 2014).
The need for sociosexuality education for individuals with DD is widely acknowledged (Blanchett & Wolfe, 2002; Saxe & Flanagan, 2014; Schaafsma, Kok, Stoffelen, & Curfs, 2015; Sullivan & Caterino, 2008; Travers & Tincani, 2010). Sociosexuality education for individuals with DD should be comprehensive (cover a range of topics), encompass both physiological as well as socio/emotional aspects, serve to help protect them from abuse, as well as offer a means to understand their own sexuality and develop a quality of life available to everyone (Barnard-Brak et al., 2014; Tullis & Zangrillo, 2013). Protection from abuse is an obvious and important reason to educate individuals with disabilities about sociosexuality issues (Barnard-Brak et al., 2014; Tullis & Zangrillo, 2013). Wissink et al. (2015) conducted a review of literature on the sexual abuse of children with intellectual disabilities (ID) as both victims and perpetrators. The authors found that sexual violence was 4 to 8 times more likely to occur with children with ID than children without disabilities, and that this statistic likely underrepresented the true incidence because abuse of this population often is not reported. Furthermore, individuals with ID experience a high incidence of sexually transmitted infections (STIs) that may indicate inappropriate sexual interaction. Mandell et al. (2008) found that girls with ID were 37% more likely to contract an STI than girls without ID. Protection alone, however, does not address the right to sexual experiences as basic human rights. Individuals with DD must be taught to advocate for themselves on how, when, or whether they wish to develop and express their sexuality (Travers, Tincani, Whitby, & Boutot, 2014; Tullis & Zangrillo, 2013).
Formal sociosexuality education remains a controversial topic among many school districts in the United States with issues related to what, to whom, and how information is taught. Currently, only 22 states in the United States require sociosexuality education to be part of the school curriculum (Guttmacher Institute, 2015). Studies show that individuals with disabilities receive even less sociosexuality education than those without disabilities (Murphy & O’Callaghan, 2004). Statistics reveal that approximately 50% of adolescents with DD have not received any type of professional sociosexuality education (Isler, Tas, Beytut, & Conk, 2009). Data from the National Longitudinal Transition Study–2 (SRI International, 2002) found that approximately 84% of students with moderate to profound ID did not receive any sociosexuality education. Teachers in the study were less likely to think that students having severe ID would benefit from sociosexuality education (Barnard-Brak et al., 2014). According to the authors, both expressive communication and communication skills were significant predictors for who would receive sociosexuality education. The authors suggest that teachers may be making judgments about students’ ability to benefit from this education instead of looking at each student’s current level of knowledge, and that, as cognitive functions and adaptive behaviors become more severe, the likelihood of receiving sociosexuality education decreases (Barnard-Brak et al., 2014). Unfortunately, sociosexuality education often is not taught until a behavior has been deemed deviant or problematic, a reactive rather than proactive approach (Abbott & Burns, 2007; Tullis & Zangrillo, 2013) predicated on a “readiness” to learn the content rather than a right to learn the content (Barnard-Brak et al., 2014).
For parents and professionals seeking to educate individuals with DD about sexual health and relationships, it may appear that the scope of topics to be taught is extremely broad and ill defined. The Sexuality Information and Education Council of the United States (SIECUS) has identified standards related to sociosexuality content that outline curricular concepts. The SIECUS curricular areas targeted in the standards as well as a brief description of each concept can be found at www.siecus.org.
Several studies have examined sociosexuality education intervention research that broadly delineates content areas. Sullivan and Caterino (2008) conducted a narrative review of three sociosexuality education programs for individuals with autism spectrum disorder (ASD). Based on their review, the authors suggested the use of a comprehensive approach to sociosexuality education for individuals with ASD where the following topics are covered: body parts and functions, physical maturation, personal hygiene and self-care, health, appropriate social and sexual behavior, privacy issues, understanding emotions and impulses, self-image, abuse prevention, assertiveness, attraction, and interpersonal relationships as developmentally appropriate for the individual.
Travers et al. (2014) also conducted a review of sociosexuality education research related to individuals with significant disabilities (i.e., moderate to severe ID). The authors report that the sociosexuality content included in the review was not described in sufficient detail, but rather, in general terms. Nine of the 11 studies included in the review evaluated a comprehensive sociosexuality program that included topics such as body awareness, sexual functioning, grooming, birth control, initiating and maintaining appropriate social interactions, asking for a date, resisting unwanted advances, and interpersonal relationships and intimacy (Travers et al., 2014). Only two studies in the review examined commercial sociosexuality curriculums (Dukes & McGuire, 2009; McDermott, Martin, Weinrich, & Kelly, 1999).
Because practitioners and family members will likely be using commercially available curriculum to teach individuals with DD about sexuality, there is a need to examine the content covered in existing curriculums to identify the scope of coverage of content. The purpose of this review was to identify curricular content used in comprehensive, commercially available sociosexuality curriculum for individuals with DD.
Method
Materials
SIECUS maintains an extensive sociosexuality education library. Based on the listing in the library and personal recommendations, curriculums included in the present review were identified by SIECUS staff/resources as the most frequently used materials to teach sociosexuality information to individuals with cognitive disabilities, and were available either commercially for purchase or in the public domain (on the Internet without associated costs; SIECUS staff, personal communication, n.d.). Individuals with cognitive disabilities included those identified as having DD, ID, multiple disabilities, and/or ASD. Eleven curriculums were initially identified. Comprehensive curriculums are those that contains a broad reach of topics related to sociosexual information; specialized curriculum center on one topic. Because the review centered on comprehensive curriculums, two of the curriculums were excluded as they centered on specialized content (e.g., Circles and Date Smart as they focused on relationships). Therefore, nine curriculums were included in the present review. Table 1 provides an overview of the nine curriculums including cost and target audience.
Curriculum Overview.
Note. FLASH = Family Life and Sexual Health; DD = developmental disabilities.
Procedures/Coding
Materials were requested from publishers and/or located on the Internet. Materials included manuals, and if applicable, videos/CDs and training materials (all elements that would be included for purchase or were downloadable). A coding sheet was developed using the six key concepts and topics identified by SIECUS. A rubric was developed to assess (a) whether the topics were included in the curriculum (i.e., scope) and (b) the depth of coverage of the topic. The rating rubric for scope ranged from 0 to 3 (0 = did not mention of the topic/subtopic, 1 = mentioned the topic/subtopic briefly, 2 = discussed the topic/subtopic but did not include specific information about the topics/subtopics, 3 = discussed topic/subtopic in detail and provided examples). The depth of each topic was assessed using the developmental levels (i.e., topics that deemed most appropriate at each stage of development) designated by SIECUS; the rating rubric ranged from 0 to 4 (0 = 0%–12.5% of information present, 1 = 12.5%–37.5% of information present, 2 = 37.5%–62.5% of information present, 3 = 62.5%–87.5% of information present, 4 = 87.5%–100% of information present).
During the first phase of analysis, three raters (authors) individually reviewed each curriculum first by reading each chapter/section of the curriculum and reviewing accompanying materials (i.e., videos, handouts). After their review, each rater rated the curricular concepts using the predetermined rubrics. During the second phase of analysis, constant comparative analyses were used to reach a coding consensus (Fick, 2014; Gibbs, 2008; Tracy, 2013). In this phase, the researchers met collectively to review their individual ratings and, through discussion, reached a consensus on the final assigned rating. Consensus was reached by raters finding examples in the curriculum and discussing his or her rationale in relation to the predetermined rubric. No score was assigned until all three raters were in agreement.
Results
Review of curricular concept areas revealed 39 topics for analysis. Tables 2 through 7 contain ratings of scope (0–3), depth of coverage of each content area (0–4), and the average rating for scope, and depth for each topic across the nine curriculums.
Curricular Concepts for Key Concept 1: Human Development.
Note. FLASH = Family Life and Sexual Health; DD = developmental disabilities.
Intimate relationships and sexual health. bSexuality education for children and adolescents with DD.
Curricular Concepts for Key Concept 2: Relationships.
Note. FLASH = Family Life and Sexual Health; DD = developmental disabilities.
Intimate relationships and sexual health. bSexuality education for children and adolescents with DD.
Curricular Concepts for Key Concept 3: Personal Skills.
Note. FLASH = Family Life and Sexual Health; DD = developmental disabilities.
Intimate relationships and sexual health. bSexuality education for children and adolescents with DD.
Curricular Concepts for Key Concept 4: Sexual Behavior.
Note. FLASH = Family Life and Sexual Health; DD = developmental disabilities.
Intimate relationships and sexual health. bSexuality education for children and adolescents with DD.
Curricular Concepts for Key Concept 5: Sexual Health.
Note. STD = sexually transmitted disease; FLASH = Family Life and Sexual Health; DD = developmental disabilities.
Intimate relationships and sexual health. bSexuality education for children and adolescents with DD.
Curricular Concepts for Key Concept 6: Society and Cultural.
Note. FLASH = Family Life and Sexual Health; DD = developmental disabilities.
Intimate relationships and sexual health. bSexuality education for children and adolescents with DD.
Discussion
There are few reviews of commercially available sociosexuality curriculums (Travers et al., 2014). This review examined sociosexuality curriculums available for purchase or in the public domain to identify and evaluate content related to scope and depth. As noted in the professional literature, sociosexuality education curriculums often are not research based (Tullis & Zangrillo, 2013). Thus, this review does not indicate evidence of the relative importance of curricular concepts, but rather, provides information related to whether information is/is not available based on SIECUS standards and if available, the depth of information about the topic.
All the reviewed comprehensive sociosexuality curriculums covered a broad range of topics and reinforced the concepts of individuals with disabilities as sexual beings, and sexuality as a natural part of being human. That such curriculums exist, speaks to attitudinal changes of past views of individuals with disabilities as perpetual children without sociosexuality interests (Brodwin & Frederick, 2010). Importantly, all the curriculums provided a foundation that individuals with disabilities may desire relationships with others and can engage in sexual behaviors alone and with others. The content of the curriculums varied in both scope (i.e., what curricular concepts were included) and depth (i.e., the amount of detail about the topic). Related to sequence, all curriculum authors noted that concepts should not be covered in a lockstep sequence, but rather, altered to meet the individual needs/interests of persons with disabilities and/or as issues that naturally arise. Regarding linkage to sociosexuality standards, only one curriculum specifically highlighted alignment with health education standards (e.g., Family Life and Sexual Health [FLASH]).
The most frequently addressed concept areas were human development and sexual health (1.8/3 for both). These concept areas mirror information found in most health education classes and curriculum for neurotypical peers that commonly include puberty processes (2.8/3), reproductive and sexual anatomy and physiology (2.6/3), reproduction (2.6/3), and STDs (2.6/3). The information on these topics clearly are more fact based and, perhaps, easier to address. The least covered in scope in human development was gender identity (0.6/3). This topic is an important one that covers information related to gender assignment at birth and gender dysmorphia (in which one’s birth gender does not reflect the person’s feelings of his or her sexual identification). Only three of the nine curriculums covered the topic at all and only one in any depth (2/4; FLASH). This is a topic that would require discussion after different gender identities have been identified and would need to highlight that there are many gender identities and all are acceptable. Also, infrequently addressed in human development was sexual orientation. Sexual orientation and gender identity may still be viewed as “controversial topics.” Abortion (addressed in sexual health) is another such topic (0.7/3 in scope). Although these topics may be seen as controversial, they still must be addressed.
One of the curriculums in the current review did not directly cover the topic of homosexuality and, overall, the depth of information about sexual orientation was low (0.4). Unfortunately, sexual orientation may remain a “controversial” topic even though there is an increase in individuals who self-identify as lesbian, bisexual, gay, or transgender, and who express difficulty with self-acceptance and attitudinal barriers (Blanchett, 2002; Morgan, Mancl, Kaffar, & Ferreira, 2015). Those teaching sociosexuality content should avoid the assumption that persons with disabilities are heterosexual, and should address gender issues and sexual orientation (Sullivan & Caterino, 2008; Thompson, 2002).
Relationship topics were addressed in most of all the curriculums, a concept area that often is missing in typical health education classes. The curriculums addressed romantic relationships (1.8/3) and friendships (1.3/3) most frequently, although few in depth. It is also important that, although not as frequently addressed, there was discussion of topics such as marriage/lifetime commitments, and raising children to enable individuals with DD to see that relationships can continue and can change in configuration over time.
Under the concept area personal skills, there was a lack of information related to negotiation (0.2/3) and knowing where to look for help (0.8/3), with both topics having no depth of discussion (e.g., 0/3 for both topics). This is an area of great need. Negotiating one’s wishes and parameters of sexual contact should involve direct discussions with a partner. This may overlap with communication in the concept area of personal skills but should be explicitly addressed in both areas. Looking for help also must be explicitly stressed. Although there may be some specificity related to context and person, individuals with DD can be instructed on how to leave a situation in which they are uncomfortable or unsafe, who are trusted individuals on which to call, and how to ensure their personal safety.
It is important to note that all but one of the curriculums included information related to protection from abuse, assault, violence, and harassment, although not all covered the topic in any depth. Some parents and professionals believe that giving information related to sexuality will increase the incidence of sexual behavior (Wolfe, 2016). However, restricting information may actually produce more abuse by not providing individuals with disabilities information about what constitutes abuse, who to talk to about abuse, and how to avoid situations where abuse may occur (e.g., in the presence of drugs and alcohol). Clearly, information related to sexual abuse is multifaceted. In this review, curriculum content related to abuse included avoiding coercion/saying “no,” personal decision making, appropriate/inappropriate touch, and identifying and responding to verbal and physical abuse. Given the importance of the topic of abuse, it may be necessary to provide training to educators and parents on these issues so that individuals with disabilities know they have the right to say “no” as well as what abuse can look like (verbal and physical). It also is important for curriculums to include the legal aspects that accompany issues of assault such as age of consent (Mackenzie & Watts, 2013).
In terms of sexual behavior, the curriculums did discuss masturbation (1.9/3) as well as shared sexual behavior (1.7/3). This positively denotes an awareness that individuals with DD may wish to engage in sexual behavior with others and have the right to do so. Interestingly, there was no information related to sexual dysfunction (0/3) and very little related to sexual fantasy (0.2/3). It is important for individuals with DD to understand that sexual fantasy is a normal aspect of sexuality and that fantasy thoughts do not necessarily translate into actual sexual behavior (e.g., you may fantasize about having sex with a male but that does not necessarily mean you are gay or will act on that fantasy). Related to dysfunction, statistics indicate that males will likely experience some form of sexual dysfunction in their lives (e.g., not being able to have an erection, or reach orgasm; Lewis et al., 2004; Shamloul & Ghanem, 2013). Similarly, females may experience pain during intercourse or have related health issues (Greydanus & Matytsina, 2010). Like everyone, individuals with DD should know that dysfunction issues may occur and where they can look for information or medical staff/interventions.
The concept area of sexual health centered primarily on information related to STDs (2.6/3), contraception (2.2/3), and reproductive health (2.1/3). It is important for curriculums to include the legal aspects that accompany engagement in sexual activity such as age of consent (Mackenzie & Watts, 2013). Alcohol and drugs should be addressed in sexual health as well as covered in other topical concept areas such as personal skills (decision making), given that the use of drugs and alcohol can lead to the impairment of decision making and engagement in risky behaviors (Blanchett & Wolfe, 2002).
Concepts related to the SIECUS standard, society and culture, were addressed infrequently and in little or no depth in the reviewed curriculums. SIECUS standards details concepts related to society and culture as including topics of society, gender roles, law, religion, diversity, media, and the arts. Diversity was covered in four of the nine curriculums (0.6/3 in scope, 0.1/4 in depth). More information on how discrimination can affect sexuality and expression would aid in self-advocacy for persons with DD. There was less discussion related to social media (0.1/3 for scope, 0/4 for depth). It would seem that these topics are important, particularly issues such as the law (culpability when sending obscene material or contact with underage individuals). However, it is unsurprising that such topics are not covered in depth due to individual and community values, and the characteristics of the individuals with whom the curriculum is being taught. By its very nature, sociosexuality education is highly value laden. Communication with families and community members has been deemed critical for success when developing or teaching such sociosexuality information to individuals with disabilities (Barnard-Brak et al., 2014). Without transparency and communication, stakeholders may feel that some topics are inappropriate for the age or developmental level of the individual or may be unwilling to talk about the issues that arise in the home after instruction. Issues of society and culture may need to be addressed to aid in the creation of acceptance and collaboration with stakeholders. It may be prudent to formally or informally assess community norms as indices of what topics should be covered, or at least to anticipate potential roadblocks. Certainly, personal ideology, including the culture and values of stakeholders, complicates sociosexuality education (Blanchett & Wolfe, 2002; Boehning, 2006).
Also contained in the concept area society and culture were issues related to law and, relatedly, consent. Sociosexuality education itself often is withheld due to assumptions that individuals with disabilities cannot undertake consent (McCabe, 1999). Rubin (2013) notes that, under U.S. law, the presence or absence of consent defines the difference between consensual sex and that of rape or sexual assault. Clearly, consent is important to consider and address in sociosexuality curriculum but should not be the reason to deny sexual expression. Research has shown that individuals with disabilities have been taught to detect changes in behavior and conversation partners by observing the person’s overall expression and body movements (e.g., head nodding; Mason, Rispoli, Ganz, Boles, & Orr, 2012) that may hold promise related to teaching individuals with disabilities how to give consent. Furthermore, Dukes and McGuire (2009) successfully taught four individuals with moderate ID to increase decision-making capacity centered on sexually related decisions. Although a small sample, the study provides evidence that decision making can be taught and maintained over time (three of the four participants maintained their knowledge 6 months after the end of the study). Finally, Khemka, Hickson, and Reynolds (2005) also taught individuals with mental retardation to make effective decision-making strategies related to sexual abuse through the Effective Strategy-Based Curriculum for Abuse Prevention and Empowerment (ESCAPE).
Study Limitations and Conclusion
There are a number of limitations of the review. First, only curriculums nominated by SIECUS and those available online or for preview were included in the review. Second, there was a great deal of overlap in the topics covered in the review that may make it difficult to clearly ascertain differences between the curriculums. Finally, the ratings related to quality of topical coverage were subjective; however, the use of three raters who rated topics through consensus hopefully mitigates some issues related to the subjective nature of the ratings.
Implications and Future Research
The nine sociosexuality curriculums included in this review covered a wide range of topics although they varied greatly in depth of the issues presented. It may be difficult to address all topics in depth but, at minimum, curriculums should provide additional resources related to where to access further information. Future studies and development of sociosexuality curriculum should include the less frequently addressed concept areas of society and culture and personal skills (e.g., values, decision making, communication, assertiveness, negotiation, and looking for help). Further development in these areas can lead to greater knowledge and, thus, the ability of persons with DD to self-advocate for their sexual rights. The present review can serve as a basis for evaluation of commercially available information. In addition, if other curriculums are used, the current review may provide a basis of evaluation related to the scope of topics that are necessary to provide comprehensive, quality sociosexuality education for individuals with DD.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
