Sexuality and Intellectual Disabilities

A Guide for Professionals

Andrew Maxwell Triska

• Publisher: Routledge
• Year: 2018
• Print ISBN: 9781138231023
• eBook ISBN: 9781315316383
• Topic: Psychology
• Subtopic: Mental Health in Psychology
• Index: Psychology

This book provides a concise overview of sexuality and gender identity in clients with intellectual disabilities for therapists, social workers, educators, and healthcare providers. It captures the social, political, and legal environment of the late 2010s and bridges the gap between research and practice, with engaging case examples drawn from the author's own practice. Guidance on everyday issues like dating and sex education is juxtaposed with material on complex, current issues in topics like LGBTQ inclusion and sexual offending. User-friendly "toolboxes" provide brief guides to practical issues like using trans-friendly language and providing family interventions. Accessible enough for students and trainees, but thorough enough for veteran clinicians, this book explores issues that professionals face in providing competent care through the lens of justice and inclusion.

Sex Education

A program from the U.K. educational channel Teachers TV (Wells, 2008) shows a scene that, to American eyes, may be startling: a group of young children in a special education classroom absorbed in a sex education lesson. An anatomically correct baby doll is passed between them. “Vagina,” their teacher declares in a broad Nottingham accent, pointing to the doll. “That’s called a vagina.” Later, a group of teenage girls are shown discussing the difference between friends and romantic partners, and a group of boys role-play about what you should do if a stranger tries to go into the bathroom with you. This is the Shepherd School, a special education school in Nottingham, England, where students are taught about bodies and sexuality from the very beginning of their education. For intellectually typical people, says headteacher David Stewart,

it’s not what we have in school. It’s what we learn from our friends, what we’re able to read, what we saw on the television. If you can’t read, if you can’t distinguish what’s being said on the television, if you don’t have those opportunities to go for sleepovers and whatever—where is your learning coming from? How important, therefore, it is that the schools provide that education.

(Wells, 2008)

Parents at the Nottingham school are given the opportunity to hear about what their children are learning at parent-teacher meetings, and Stewart finds that few object when they learn the content of the curriculum (Wells, 2008). The extent and thoroughness of the teaching methods shown in the half-hour program are revolutionary compared to what most adults remember about sex education, which may have been nothing more than a brief video in high school health class. (Information on accessing this half-hour video can be found in Appendix A).

Sex education represents one of the least understood topics in special education. Even well into the 21st century, sex education in the United States—for both intellectually disabled and non-disabled people—tends to be woefully inadequate and starts at a problematically late age. Speaking to a young special education teacher I met while serving on a gender identity panel confirmed much of what I’d discovered through the academic literature on the subject—that sexuality and gender education tends to be provided reactively rather than proactively if it is provided at all. In other words, education on sexuality and gender identity tends to be provided only when a “problem” occurs or students ask questions. Often, and especially in lower grades, there is little or no information provided proactively, such as in a standard sexuality curriculum. This appears to be common—in fact, almost universal—among those who work with intellectually disabled people (Schaafsma, Kok, Stoffelen, & Curfs, 2014; Thompson et al., 2014).

However, as professionals, this provides us with an excellent opportunity to work for change in our practice settings. Sex education can be provided by a wide variety of professionals, from teachers to social workers to direct care staff, and can be a part of almost any life skills curriculum. It can be delivered either individually or in groups and can cost surprisingly little to implement as part of an existing program. In the following sections, you will learn about the sexual knowledge that your clients need, the various ways of providing it, and the ways in which you can engage families in the sex education process.

Sexuality Knowledge: What Do Intellectually Disabled People Need to Know?

Designing a sex education program means setting specific, measurable learning goals. What skills do you want your students to be able to harness outside the classroom? Out of many possible sexuality topics, which ones will be most useful to your population? What knowledge do children, adolescents, and adults need at minimum to function in daily life? What knowledge do your specific students or clients need that might not be covered in a sex education curriculum for non-special-needs students?

Advocates for Youth, a nonprofit dedicated to advancing reproductive and sexual health education, has published a set of guidelines on sex education curriculum content, the National Sexuality Standards: Core Content and Skills, K-12. These guidelines (Advocates for Youth, 2011) are drawn from current research on sexuality and sex education and were originally designed to address inconsistencies in sex education curricula. The content areas that the Standards suggest for a comprehensive sex education curriculum are anatomy and physiology, puberty and adolescent development, identity (which covers such topics as gender identity, gender expectations and stereotypes, and sexual orientation), pregnancy and reproduction, sexually transmitted diseases and HIV, healthy relationships, and personal safety (Advocates for Youth, 2011). The report is available for free online and includes a detailed breakdown of specific knowledge and skills by age and grade level.

The Standards are intended to provide a minimum standard for a K-12 sexuality education curriculum. There is no reason to believe that sex educators for young intellectually disabled people should teach any fewer topics or devote less attention to any particular topic. Furthermore, though the Standards’ content areas are tailored to K-12 students, all of these topics are equally appropriate for adult learners—even the topic of puberty and adolescent development, which sex educators could use as a teaching opportunity to add to clients’ existing knowledge about human development and address myths and misconceptions about human development that they may have learned earlier in life.

However, even given the Standards’ universal applicability, there are other topics that a special education curriculum may need to emphasize more than a general education curriculum would or to teach in a different way. Based on current research in special needs sex education, educators should pay particular notice to these topics in the creation of a curriculum:

1. Consent and safety. Intellectually disabled people are more likely than the general population to be the victims of abuse. Your curriculum will need to pay specific attention to students’ ability to recognize and report abuse. See Chapter 2 for more information on interventions specifically for abuse prevention.
2. Sexual pleasure. Studies show that intellectually disabled people—and women in particular—often do not associate sex with pleasure, feel that sex is “dirty” or prohibited, and associate sex with negative consequences (Bernert & Ogletree, 2012; Fitzgerald & Withers, 2011). Shame and fear may prevent your students or clients from enjoying solo or partnered sexuality, even if there are no obvious physical or logistical barriers. Because of this, your curriculum should include positive depictions of sexuality that focus on fun and enjoyment as their own goals, distinct from reproduction, marriage, and other concepts. It should also specifically address female sexual pleasure and masturbation.
3. Public and private behavior. While a general education curriculum assumes that all but the youngest children will learn appropriate behavior from their peers, a special education curriculum may need to reinforce social appropriateness at all ages and levels of ability. This is particularly important in light of the potential legal consequences of adults engaging in sexual behavior in public (see Chapter 6).
4. LGBTQ identities. There are often few opportunities for LGBTQ intellectually disabled people to explore their identities, find information about sexual orientation and gender identity, receive LGBTQ-specific healthcare services, and seek community with other LGBTQ people. While non-disabled people may find LGBTQ resources on the internet, in books, or through friends, intellectually disabled people may not be able to access these resources due to limits in their literacy, privacy, transportation, or finances. Professionals need to be proactive in bridging these knowledge gaps and connecting students to the larger LGBTQ community. A more comprehensive look at LGBTQ identities can be found in Chapter 6.
5. Self-advocacy. Studies of staff members who work with intellectually disabled people indicate that they are often underprepared to deal with sexuality issues due to lack of training and clear policy guidelines (Wilson & Frawley, 2016; Thompson et al., 2014; Rose et al., 2012). Students must be prepared to advocate for their sexual rights and know where to find help if their rights are not recognized.
6. Physical barriers. Intellectually disabled people disproportionately experience physical disabilities and medical issues that may affect their ability to engage in sexual activity. Educators should provide information on methods of overcoming these barriers, such as adaptive technology for people with physical limitations who wish to have solo or partnered sex. A list of such resources is available in Appendix C.

Figure 1.1The IntimateRider, An Article of Assistive Furniture for People with Spinal Injuries

Choosing a Sex Education Curriculum

Very little recent research exists on the effectiveness of specific sex education methods for intellectually disabled people. The few studies that do exist reveals the many challenges that special needs sex educators face in choosing a curriculum. In a 2014 review of 20 articles on the effectiveness of sex education methods aimed at intellectually disabled people, Schaafsma, Kok, Stoffelen, & Curfs (2014) note that most of the articles did not contain detailed methods, materials, and program goals. When there were stated goals, they tended to be overly broad and did not usually define exactly what types of sexual knowledge intellectually disabled people should have. The authors further note that evaluations of these programs’ efficacy often relied on written assessments rather than other, more accessible methods, such as role-play or observation. The authors conclude that the most effective teaching methods involved “modeling, role-play, rehearsal, and practice skills” (Schaafsma, Kok, Stoffelen, & Curfs, 2014). This is in line with what we know about how to develop an accessible curriculum in any subject.

Assessing Sexual Knowledge

Assessment tools are important for both measuring students’ knowledge of sexuality at the beginning of sex education and evaluating your program at its end. The most widely used sexual knowledge assessment tool for intellectually disabled people is the Assessment of Sexual Knowledge (ASK), which was developed in Melbourne, Australia in 2003. The ASK consists of both verbal questions and line drawings and is intended to be used in educational settings with children and adults. It is a comprehensive assessment tool, covering every topic recommended by the Standards with the exception of gender identity. The ASK has shown high test-retest and inter-rater reliability (Galea et al., 2004) and was reviewed by 15 professionals for validity during its development (Thompson et al., 2016). Most promisingly, you can use the ASK no matter what your role or level of education: students, paraprofessionals, and professionals alike can administer the ASK.

However, a 2016 study on how clinicians used the ASK in everyday practice raised concerns that this tool used language that was better suited to higher-functioning clients and not as understandable to lower-functioning clients (Thompson et al., 2016). Furthermore, its topics may need to be updated to reflect the social and technological changes of recent years, such as the internet and social media (Thompson et al., 2016), cyberbullying, LGBTQ identities, and asexuality. Nevertheless, a tool like the ASK may provide a useful starting point in designing a sex education curriculum that fits your clients’ or students’ needs.

Teaching Materials and Methods for an Accessible Curriculum

As mentioned above, the most effective teaching materials provide opportunities for role-play, rehearsal, and skill practice. They must also be understandable to the large portion of intellectually disabled people who lack literacy skills. This section will therefore focus on commercially available materials that are visual, providing instruction without the need for literacy, and interactive, engaging students in learning through games, stories, and social activities. The materials below are also generally considered appropriate for use by staff members who do not have formal training in sex education or the budget to hire a trained sex educator (which may be appropriate or necessary in some settings).

The widely-used Circles curriculum, first developed by special educator James Stanfield in the early 1980s, provides a visual blueprint for intellectually disabled students to understand social relationships and levels of intimacy. Students are encouraged to visualize their social relationships in terms of nested circles, with the inner circles filled with close family members and intimate partners and the outer ones with more distant relationships, such as coworkers and strangers. Educators help students categorize appropriate social behavior by level of intimacy, such as hugging for friends and handshakes for strangers. The program consists of an instructional video, a large wall graphic for the instructor, and smaller personal worksheets for students. Teaching is done visually using colorful graphics and pictures of people in students’ social circles. The curriculum is used primarily to talk about appropriate social boundaries and abuse prevention. It does not contain detailed information about sexuality.

Figure 1.2A Visual Relationships Curriculum for Intellectually Disabled Learners

BodySense, a U.K.-based organization, has created three instructional dolls to assist in special needs sex education. Two of them, “Desmond” and “Daisy” (pictured below), are anatomically correct adult dolls with genitals and breasts. They are outfitted with clothing and underwear. Sitting versions of the models and a miniature wheelchair are available. These models are intended not only to teach students about the human body, but to model social interactions, grooming, and other essential skills. According to the manufacturer, many schools incorporate these dolls into ev...

Table of contents

• Cover
• Title
• Copyright
• Contents
• Acknowledgments
• A Note on Gender Pronouns
• A Note on Disability Terminology
• Introduction
• 1 Sex Education
• 2 Consent and Victimization
• 3 Sexual Expression and Relationships
• 4 Parenting
• 5 Sexual Orientation and Gender Identity
• 6 Sexual Offending
• 7 Disrupting the Language of Sexuality and Intellectual Disability
• Conclusion
• References
• Appendices
• Index