Frantz | 23-34




Positive Approaches Journal - Volume 2 Title

Volume 10 ► Issue 1 ► May 2021



Detangling Sexuality Information: Misinformation, Confusion or Hope

Beverly L Frantz


Abstract

Sex is a difficult subject for parents, teachers, and other professionals to discuss. Sexuality conversations tend to be brief, biased based, and infrequent. Without ongoing comprehensive sexuality education, a gap between intelligence, curiosity, social messaging, and personal experiences can have significant consequences.

This paper explores how the lack of comprehensive sexuality education with an increase in the number of sexual messages from the internet and other social media platforms together with sexual behavior rules that people are required to follow in group homes or other residential settings provide confusion for people with intellectual and developmental disabilities. The confusion looks very different for an adult and is a slippery slope from non-contact sexual behavior to sexual offending behavior.

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Sexuality is an integral part of who we are. It is a basic and natural human drive. It is more than just “doing it” or “having sex.” It is a constant companion throughout life. The World Health Organization (WHO) defines “sexuality” as a “central aspect of being human which encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction.1

If sexuality is such an integral part of our lives, why do we have such a difficult time talking about it? Especially, with people with intellectual and developmental disabilities (IDD)? Over their lifespan, a person with IDD may need additional support to explore and understand sexuality. They want a romantic relationship. However, their parents, residential staff, or other professionals may discourage the relationship for fear they may engage in sexual intercourse.

Sources of Conflicting Sexual Messages

Remember when you were a child, how did you learn about sex? What formal or informal messages did you receive about sex? How many boyfriends or girlfriends did you have in grade school? Did the person you thought of as your boyfriend or girlfriend know? How long did the relationship last? A day, two days, a week? What about in high school? Post high school? Sexuality is not static. It is fluid. We perceive it differently as we age and experience its various forms. For example, sexuality in its broadest terms includes holding hands, kissing, snuggling, doing things together, the examples are endless.

People, including people with IDD, receive numerous sexuality messages over their lifespan. Age, culture, family beliefs, geography, education, religion/faith all contribute to the types of sex messages a person receives. People, including parents, caregivers, teachers, professionals, direct support professionals, siblings, and friends each provide different messages. The media including print, television, movies, internet, and other social platforms also supply different messages and frequently contradict each other. These contradictory messages become a tangled web of words. A web from which it is difficult to discern accurate information from misinformation and sensational information.

Regardless of any sexuality question or issue, clear and concise statements are easier to understand. People with IDD infrequently receive clear and concise statements; unless, it is to re-direct or reprimand their behavior. Everyone should have the opportunity to receive clear, accurate, and non-judgmental information about sexuality.

The Role of Parents/Care Providers in Sex Education

Parents and care providers play a significant role in their child’s sexual education and behaviors. Curiosity about sex is natural, regardless of a person’s age. If accurate sexuality education is not provided, children will learn about it from other sources. The sexuality information a child, adolescent, or adult receives from outside of the family may be misleading and inaccurate. Parents must be sensitive to what information their child, regardless of the age of the child, is seeking. Sources may present information as accurate, misleading, romanticized or a combination.

The following example illustrates how easily, from a generational perspective, it is to misunderstand sexual words and concepts.

After getting off the school bus and walking into his house a third-grade student  asked his mother, “Did you and dad have oral sex this morning?” Surprised  by the question and not knowing exactly how to respond, she told her son to ask his father when he came home from work. When dad came home, she told him what their son had asked. In a few years the father had planned to have the “sex talk.” But his son asked a question and he would answer it now. His son was playing a video game when dad approached him to talk. His son was focused on his game and showed no interest in what his father was trying to talk to him about.

Mom and dad heard “oral sex” from an adult perspective and were prepared to answer the question from that perspective. That is, the mechanics of oral sex. What the child was actually asking was whether his parents kissed each other that morning. How could oral sex be mistaken for kissing? Simply. A few days before the child asked, “the question,” he had a dental check-up; and, the importance of oral hygiene was discussed. The following day his buddy at school shared a secret with him. His buddy said that during recess and behind the school dumpster, he was going to have sex with his girlfriend. From a child’s perspective, kissing was synonymous with sex.

The boy was asking his mother about kissing, not oral sex. He put one (visit to dentist/oral hygiene) and one (his friend’s plan to kiss his girlfriend) together and got three (the oral sex question). Younger children are interested in body parts, pregnancy, and babies, rather than the mechanics of sex. Providing accurate, non-judgmental information to a child about their bodies, boundaries, and sexuality reduces the chance of misinformation and improves their ability to make safe and informed decisions. Accurate information acts as a safe passage to adolescence and adulthood.

Parents are their child’s first sex educator. They play a significant role in the sexual development and behavior of their child. Talking about sex, regardless of the child’s age, can be uncomfortable. At what age should parents start discussing sex with a child? How to start the conversation? What should be included in the conversation? The “sex” conversation is not a one-time conversation. It is a continuous conversation delivered in a non-judgmental, age appropriate, positive manner. There is no single, right way to talk to your child about sex. In fact, talking to your child about sex might be the easiest conversation since sex refers to the biological characteristics that define humans as male or female. Discussing the broader topics of sexual health, sexuality, and sexual rights are more challenging. Chronological and development ages and life experiences are important factors in considering when, how, and what topics to begin with.

Healthy Sexuality

The Pan American Health Organization (PAHO) and the WHO convened a number of experts together to develop working definitions of key terms when discussing sexual health with respect to body integrity, sexual safety, eroticism, gender, sexual orientation, emotional attachment, and reproduction. Four key concepts were defined: sex, sexual health, sexuality, and sexual rights. “Sex” as commonly defined generally means sexual intercourse. For the purpose of this paper, the PAHO and WHO definitions will be used. That is, “sex” refers to the biological characteristics that define humans as male or female. “Sexual health” requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual expression, free of coercion, discrimination, and violence. For “sexual health to be attained and maintained, the sexual rights of all persons must be respected, protected and fulfilled.2

“Sexual health” needs to be understood within social, economic, and political contexts. Sexual health includes:

- Well-being, not merely the absence of disease

- Respect, safety and freedom from discrimination and violence

- The fulfillment of certain human rights

- The relevant throughout the individual’s lifespan, not only to those in the reproductive years, but also to both young and the elderly

- Diverse sexualities and forms of sexual expression

- Critically influenced by gender norms, roles, expectations, and power dynamics

“Sexualization” often called the “shadow” side of sexuality, spans behaviors that range from harmless manipulation to violent and illegal behaviors. Behaviors may include flirting, seduction, sexual harassment, sexual abuse, and rape.

The importance of providing comprehensive sexuality education in a positive, non-judgmental manner is critical to providing an opportunity for individuals with IDD to receive accurate sexuality information, ask questions, understand the rights and responsibilities of engaging in sexual activity, and to enjoy the same everyday life as those without a disability. The numerous and conflicting formal, informal, and sexually nuanced messages a person with IDD receives through their lifespan can impact how they understand the subtle differences between platonic, romantic, and intimate relationships.

Sex Education in School

A 2014 study reported that 93% of parents supported having sex education taught in middle school and 96% of parents supported having sex education taught in high school3. Comprehensive sex education is supported by numerous prestigious health and medical organizations including the American Medical Association, the American Academy of Pediatrics, and the Society for Adolescent Health and Medicine.

Schools in Pennsylvania are not required to teach sex education4, however, they are required to provide human immunodeficiency virus (HIV) education. Primary/elementary schools are allowed to omit instruction on the sexual methods of infection transmission. Sex education programs vary widely across the 500 school districts in Pennsylvania. With the exception of sexual transmitted infections (STI) and HIV prevention education, each school district is permitted to decide if it chooses to offer sex education and what topics they want included. If a student’s school does not provide comprehensive sex education, parents can advocate or insist that comprehensive sex education be included in the student’s Individualized Educational Program (IEP).5

An IEP is a program developed to ensure that a student with an identified disability, who is attending an elementary or secondary educational institution, receives specialized and related services. Some consider the IEP to be the cornerstone of a quality education for a student with a disability. School districts that do not offer comprehensive sex education curricula, unintentionally place students with disabilities at a higher risk of sexual victimization and offending behaviors. A substantial gap exists between what a child learns at home about healthy sexuality and what they learn and experience in middle and high school. How do they reconcile students touching other students – from hugs, to holding hands and kissing, to chest bumps and towel snaps in locker rooms? Especially, if they were taught to “keep your hands to yourself?” One risk reduction strategy, cited by the Center for Disease Control (CDC), is providing comprehensive sex education to reduce victimization.

When organizations such as the American Medical Association, the American Academy of Pediatrics, the Society for Adolescent Health and Medicine and the CDC support comprehensive sex education in schools, the question needs to be asked – why isn’t comprehensive sex education part of every student’s IEP? Anecdotal reports suggest that sex education is frequently included in a student’s IEP only when the student exhibits challenging sexual behavior, such as masturbating (self-pleasuring) in class, sexualized behaviors and inappropriate sexual language directed toward teachers, staff, and other students.

Students graduate from high school and enter the workforce or a post-secondary educational institution. Curiosity, misinformation, and gaps in accurate information grow exponentially as the individual transitions from high school into adulthood. Once a student leaves school, the opportunity to obtain healthy and accurate sexuality information diminishes. A one-day training or conference workshop cannot replace the mixed messages the person has previously received. In fact, it may be more confusing.

How will lack of sex education, sexual misinformation, and stereotypes impact their employment or studies? How and who will help them navigate their new sexual landscape?

The Individual with Disabilities Education Improvement Act (IDEA) requires that by age 16 the IEP team must determine what instruction and educational experience will help the student prepare for transition from school to adult life. Person Centered Planning (PCP) is widely used to help an individual explore where they are now, how they would like their life to change and what is needed to bring about that change. Consider who has the authority to decide if there is a difference of opinion between what is important to the person and what is important for them. It is not the person with IDD. It is a person with authority, perceived or real, who will make the final decision. Parents, educators, clinical professionals, and others create barriers for the individual to live an everyday life. Their own fears, biases, misinformation, and desire to protect the individual may have the reverse effect. Safety and risk must be balanced. PCP is an excellent opportunity to introduce new or expanded sexual topics into the plan that will create a safe place to talk and learn about sexuality. 6

Self-Determination

Self-determination is the concept and principle that includes people choosing and setting their own goals, being involved in making life decisions, self-advocating, and working to reach their goals. The American Association on Intellectual and Developmental Disabilities (AAIDD) defines “Self-determination” for people with IDD as “having the same rights to, and responsibilities that accompany, self-determination as everyone else. They are entitled to opportunities, respectful support, and the authority to exert control in their lives, to direct their services, and to act on their own behalf. 7

A review of the self-determination literature tells us there is a consensus on the definition and concept. What is omitted is the concept of sexuality. It is intertwined with the person’s future goals, their ability to take control of their life, developing healthy self-esteem, willingness to ask questions and seek answers, and solutions. As previously mentioned, sex is more than solo or partner genital behavior. Sex is only the first three letters of sexuality. It is one component of a much larger concept.

The adverse consequences for people with IDD who receive no or inaccurate sex education increase the risk of sexual victimization and sexual offending behaviors. There are few published studies on the relationship between comprehensive sex education, victimization and offending sexual behavior, and individuals with IDD.

The number of people with IDD who come into contact with law enforcement as victims, witnesses, or perpetrators is staggering. The victimization rate for people with IDD is anywhere from 4 to 10 times higher than the general population. The discrepancy between the 4 to 10 times is based on whether the data collected included people living in congregated residential settings.8 Alleged perpetrators, generally for sex-related offenses, are disproportionately represented in the criminal justice system.9

The difference between living independently, living with family, or living in a community residential setting directly impacts the type and number of sexual messages a person receives10. Studies have suggested that the turnover rate in group home settings varies between 50% and 85% per year. Sheryl A. Laron, in her book Staff Recruitment, Retention, & Training Strategies For Community Human Services Organizations, reported that 41% of direct support workers left their jobs before finishing six months on the job, and another 25% left before finishing 12 months on the job.11 The number of agency staff and other professionals involved with supporting someone living in a group home could be 50 or more a year. Each of those individuals may express their personal views about sexuality to the people they support. A 2018 study conducted with 23 Applied Behavior Analysis (ABA) providers explored staff retention. The study found that the rate of pay and hours of supervisions were correlated with decreased turnover. Hence, the decrease in staff turnover should limit the number of mixed messages, especially around sexuality.12

Because of staff turnover, it is not practical to attempt to train all staff about sexuality and how to effectively convey accurate sexuality information to people with IDD. Instead, several staff who have shown an interest in sex education, are open to receiving on-going comprehensive sex education, are non-judgmental, respectful of other’s self-identifies and willing to work with professionally trained sex educators should be designated as the agency’s “sex educator” for the residents and staff.

Conclusion

By the time an adult individual moves from their familial home to independent living, a group home, or other residential setting they should have a strong foundation in comprehensive sex education. It is essential to begin to introduce comprehensive sex education at an early age. Lack of such education can create a dangerous gap in understanding the consequences of misinterpretation of sexual nuances and misinformation.

Sex education provides an opportunity for people with IDD to enjoy the same sexual rights and responsibilities as the general population. It can also reduce the risk of sexual victimization and prevent individuals from being charged with sexual offenses.

There is a road map for providing accurate sexual information. It starts with parents and caregivers providing short, positive, age appropriate conversations about the human body, boundaries, and saying “no.” It continues in the educational system with IEP, PCP, and Self-Determination. Each of these domains should provide an opportunity for students to receive comprehensive sex education. The road map becomes more challenging when a person transitions from high school to adulthood. How is accurate, non-judgmental, and sex positive information provided? What are the consequences if not provided? Who monitors the information being provided? To embrace human sexuality in the lives of people with IDD the preceding questions need to be answered. In addition, we must understand and affirm that people with IDD are sexual beings and have the same sexual rights, responsibilities, and risks that people without IDD have.


 



References

1.      Sexual and Reproductive Health and Research including the Special Programme HRP. Geneva, Switzerland: World Health Organization; 2011. 1-4.

2.      Promotion of Sexual Health Recommendations for Action. Antigua Guatemala, Guatemala: Pan American Health Organization; 2000. 3-4.

3.      What’s the State of Sex Education in the U.S.? http://www.plannedparenthood.org/learn/for-educators/whats-state-sex-education-us Published 2021. Accessed March 18, 2012

4.      Schools in Pennsylvania are not required to teach sex education (Pennsylvania Consolidated Statutes Title 22§4.29 http://www.pacodeand bulletin.gov/Display/pacode?). 

5.      IDEA & IEPs. National Parent Center on Transition and Employment.  https://www.pacer.org/transition/learning-centered/planning/idea-ieps.asp. Assessed March 22, 2021.

6.      Pennsylvania State Dept. of Welfare. (1993). Finding a Way toward Everyday Lives: The Contribution of Person-Centered Planning (H133B80048). Harrisburg, Pennsylvania: Office of Developmental Disabilities. 

7.      Self-determination. Joint Position Statement of the AAIDD & The Arc.  AAIDD Website. https://www.aaidd.org/news-policy/policy/position-statements/self-determination. Published February 14, 2018. Accessed March 24, 2021

8.      Sobsey, D.  Violence and Abuse in the Lives of People with Disabilities: The End of Silence Acceptance. Baltimore, MD: Paul H Brookes; 1994, 64-75. 

9.      Bronson J, Maruschak LM, Berzofsky M. Disabilities Among Prison and Jail Inmates, 2011-12. Washington DC: US Department of Justice; 2015. 

10.  May DC; Kundert DK. Are Special Educators Prepared to Meet the Sex Education Needs of Their Students? A Progress Report. J. Spec. Educ., 1996-01 Vol 29(4) 433-444. 

11.  Larson SA, Hewitt, AS.  Staff Recruitment, Retention, & Training Strategies for Community Human Services Organizations. Baltimore, MD: Paul H Brookes; 2005. 

12.  Thornton, C.R. (2018) Direct Support Staff Retention and Turnover in the Field of Applied Behavior Analysis: A National Survey (Unpublished thesis). Temple University, Philadelphia, Pa





Biographies:

Dr. Frantz directs the Institute on Disabilities at Temple University’s criminal justice and sexuality initiatives, including curriculum development, training, and technical assistance at local, state, and national levels. Her area on concentration is the intersection of disabilities, healthy sexuality, sexual violence, and the criminal justice system. She has produced numerous training videos for first responders, family members, victims, and disability service professionals. She authored personal safety curricula, peer reviewed journal articles, book chapters, DVD, and tip sheets. Dr. Frantz was the subject matter consultant for ESPN-60 program on the sexual abuse of athletes with intellectual disabilities. She is a guest faculty member for Aequitas: The National Prosecutors’ Resource on Violence Against Women, and adjunct assistant professor at Temple University. Dr. Frantz earned Master of Science degrees from Villanova University and the London School of Economics and a Doctorate degree from Widener University with a focus in Human Sexuality.

Contact Information

Beverly L Frantz

Project Director, Criminal Justice and Healthy Sexuality Initiatives

Institute on Disabilities, Temple University

215-204-5078

Beverly.frantz@temple.edu