Sexuality Education: Building a Foundation for Healthy Attitudes

from School Health Reporter, Winter 2005

By Terri Couwenhoven, MS

Sexual Learning: How it Happens and Why it Needs to Happen

Parents are the primary sexuality educators of their children, which is how it should be.  From birth, we model and teach our children messages about love, affection, touch and relationships. How we cuddle and hold our children teaches them how we feel about them. Some believe loving touch early in life sets the stage for healthy adult intimacy.

Who we are as sexual adults is largely a result of how we received information as children. For most of us, learning about sexuality occurred in a variety of ways. Our parents were likely our primary sexuality educators, as they are the initial and most frequent teachers and models. Later, our peers, the media, religion and life experiences influenced our sexual learning.

For people with disabilities such as Down syndrome, opportunities for learning about sexuality are more limited. The reading level of materials is out of reach, which limits access to quality printed materials and resources. Even though we, as parents, understand the importance of creating opportunities for socialization, opportunities for our children with Down syndrome are scarce.

As a result, they have fewer chances to observe, develop and practice social skills, which are particularly important in early and late adolescence. The subtle messages, looks and innuendoes bantered between pre-adolescents and teens on television and in school are often lost on our children. They may have trouble making decisions and thinking realistically about situations. All of these factors underscore the special need for sexual education for these children.

Studies tell us what parents already know: the risk of exploitation among people with developmental disabilities is greater than for those without. Reasons for this include:

• Children with developmental disabilities are more likely to be dependent on others for meeting their basic needs because of the nature of their disabilities;
• Children with developmental disabilities may have learned to be compliant or passive, especially with authority figures;
• Children with developmental disabilities may have trouble with reasoning and judgment;
• Children with developmental disabilities are exposed to larger numbers of caregivers than their non-disabled peers.

Each of these factors increases the vulnerability of your child to some type of exploitation or abuse.

Even though the need is greater, many parents avoid or postpone addressing sexuality issues until it is too late.  There are many reasons this happens, including:

• Their own sexual learning process. Some parents had poor role models for teaching and learning about sexuality.
• Age or generation of the parent. Parental attitudes about sexual education usually mirror the attitudes of society during their childhood.
• Availability of resources and supports. Parents easily are overwhelmed with the day-to-day issues that go along with raising a child with a disability. Sexuality issues are easy to place on the back burner. Once they are ready, there are few community resources, making getting help with teaching about sexuality and related issues difficult.
• Disability of the child. In my experience as a sexuality educator, the abilities of the child directly affect whether the parent sees the child as sexual. Often, the more severe the disability, the less likely parents are to feel the need to address sexuality issues.

Proactive Sexuality Education

All children begin their lives as sexual people, and teaching about sexuality should occur throughout life.  Children with developmental disabilities are no exception.  Providing information and addressing issues at younger ages allows you to reinforce concepts over longer periods in a wider variety of real-life situations. For example, it is more difficult to teach the physical changes that accompany puberty if your child does not have vocabulary for the genitals.

Key Concepts and Issues in Sexuality

• Teaching about the Body. Help your child use the correct words for genitals. This should be done when the child is learning about other body parts and their functions. Teaching about private parts, however, should be done in the context of private places, giving opportunity to discuss societal rules. Another piece of the foundation includes understanding body ownership and learning hygiene skills. Once your child begins to use terminology appropriately and apply societal rules related to body parts, it is time to include phrases that prevent exploitation and emphasize the importance of reporting when his or her privacy or body is not respected.
• Understanding Gender Differences. Becoming aware of the physical differences between male and female bodies is another block to the foundation of sexuality knowledge.
• Touching or Stimulating Private Parts. Many children discover fairly quickly that touching one’s genitals feels good. At a young age, genital touching is generally not purposeful or goal-oriented, but instead a result of normal body exploration and curiosity. When genital touching or masturbation occurs at inappropriate times and places, clear and direct messages need to be shared.
• Privacy. For people with developmental disabilities, privacy often is seen as a privilege rather than a right, and the rules of privacy frequently are violated by the people who support them.
• Touch, Affection and Boundaries. Helping people with developmental disabilities understand the rules related to touch, affection and boundaries is difficult because their boundaries are violated starting at very early ages with invasive therapies or the well-meaning attention of strangers.
• Identifying and Communicating Feelings. Being able to communicate feelings is an important interpersonal skill. It is important to identify and respond to the emotions of a friend or partner. It also provides a basis for discussions surrounding feelings about body changes and touch.
• Social Skills. An important goal of early sexuality education is maximizing your child’s ability to confidently interact and relate to others. Learning and applying social skills typically requires concrete instruction and coaching throughout life.

Building on the Foundation:  The Growing Years

By the time your child approaches adolescence, schools should be providing learning opportunities that augment and reinforce learning and understanding sexuality issues.

But even though our country has made progress in accepting the fact that non-disabled adolescents are sexual and therefore need quality sexuality education, when it comes to providing sexuality education for teens with developmental disabilities, we still have a long way to go.

Educating people with Down syndrome in inclusive classrooms is occurring more frequently than in the past. Sexuality education within the regular curricula, however, looks different than the training typically provided for individuals with developmental disabilities. Some benefits of involving an adolescent in programming specifically geared toward people with cognitive disabilities include:

• smaller groups of students
• smaller amounts of information presented per session
• improved content relevancy focusing on common issues and problems
• use of specialized, more concrete teaching materials
• increased opportunities for repetition and reinforcement
• safer “practice” settings for reviewing and applying skills among peers

Even if your child’s school offers instruction geared toward the needs of individuals with cognitive disabilities, the quality of programming can vary widely. Community attitudes and beliefs, skill and comfort level of the instructor, resource allocation (funding) and parental support are factors that typically affect program quality. Here are some questions and background information that may be helpful as you attempt to evaluate and advocate for comprehensive programming:

What topics are covered?

Concepts and information taught within a program should include: parts of the body; maturation and body changes; personal care (hygiene, feminine care, medical exams); social etiquette (grooming, social skills); relationships;  exploitation prevention; dating and relationship development; sexual expression in relationships; pregnancy prevention (birth control); sexually transmitted diseases and their prevention; and rights and responsibilities of sexual behavior.

Who teaches the program?

I have met teachers who are comfortable working with people who have developmental disabilities but aren’t comfortable with sexuality issues. This scenario often results in incomplete, “problem-focused” programming (information designed to fix a problem rather than cultivate sexuality) that includes “safe” and non-controversial sexuality topics (i.e. exploitation prevention, body parts).

In other situations, sexuality educators can be skilled and comfortable teaching sexuality topics, but have little or no experience working with or teaching people with developmental disabilities. The consequence is programming that is too sophisticated and complex, decreasing relevancy and comprehension for the students. It’s ideal to involve a certified sexuality educator who has experience working with people who have developmental disabilities.

What values are inherent within the program?

Usually when referring to values within curricula, it is in reference to universal values we all agree are important.

Examples of these values include:

• All of us are sexual
• Sexual activity comes with responsibilities
• Exploiting or hurting others is wrong

How is learning evaluated?

Student learning associated with sexuality programming can be evaluated through paper and pencil testing (labeling, selecting appropriate responses, picture selection), board games, oral tests or behavioral testing (role play, observation of skills within contexts outside the classroom, in situ assessment).

Critical times for programming within the school setting include job-training programs. If your child is transitioning from school to community, sexual education, in some form, should be a component of the curriculum. If your child is no longer in school, advocate for sexuality programming within other contexts. Sheltered workshops, disability agency job-training programs, clubs, or other groups your child belongs to can effectively integrate sexuality information into existing programs. Often the programs I am asked to do are started by groups of parents or professionals who are simply listening and responding to the needs of individuals with disabilities.

When Sexuality Education Isn’t Enough

Participating in the best sexuality program doesn’t guarantee sexual problems will be resolved. Usually it’s a good beginning and first step in helping people with disabilities gain a better understanding of who they are and how they appropriately interact with others. Although most communities have access to counselors, finding someone trained in dealing with sexuality issues and comfortable working with an individual who has limited verbal abilities and/or cognitive limitations often is a challenge. You may be able to get help by contacting the following organizations.

Local disability organizations

Most agencies supporting individuals with developmental disabilities (ARC, UCP) by now recognize their needs and rights related to sexuality. Often these agencies have compiled lists of resources for counseling or are aware of emerging experts in this area. Communities are offering support groups that address the unique needs of people with cognitive disabilities with increasing frequency.

Planned Parenthood organizations

Although not all Planned Parenthood agencies around the country have staff trained or experienced in working with individuals with developmental disabilities, more often than not, they have a good level of comfort addressing sexuality issues in general. Many times these organizations are the first to initiate services for specialized populations.

AASECT counselors and therapists

AASECT (American Association of Sex Educators, Counselors and Therapists) is the only organization devoted to training and certifying professionals to promote sexual health. AASECT-certified counselors or therapists have extensive training in all aspects of sexuality and are available in most states. Few, however, specialize in working with individuals with developmental disabilities. If you are fortunate enough to have one of these resources in your community, it’s likely the above agencies know who they are and how they can be reached.

Conclusion

This two-part series was designed to identify a list of key concepts and issues that, when addressed early in life, can provide a good foundation for the development of healthy sexual attitudes from which to build as a child matures. The concepts and issues identified in this series are by no means comprehensive, but are meant to give a good start toward the problems we so often see after years of sexual repression and denial.

Teaching all of the concepts listed may never happen for some children. For children with more severe cognitive impairments, there may be less emphasis on social skills and more time spent on helping a child feel good about who he or she is. What’s most important is that one recognizes that a child has sexual and informational needs like everyone else.