The Importance of Social and Sexual Education for Individuals with Down Syndrome
Leslie Walker-Hirsch, M.Ed., FAAMR, is a social development and sexuality consultant and co-creator of CIRCLES, a multi-media program for teaching individuals with cognitive disabilities about social and sexual relationships and boundaries. She discusses the importance of a social/sexual education for individuals with Down syndrome. The content has been edited for length.
In the past, sexuality was not considered an issue for individuals with Down syndrome because of the inaccurate belief that intellectual disability produced a permanent state of childhood. In fact, most people with Down syndrome have sexual feelings and intimacy needs. It is important that the expression of these feelings in socially acceptable and age-appropriate ways be recognized by families and caregivers.
Sexuality education is the way to plan for this aspect of adulthood as it applies to independence in educational, social, residential, and vocational settings.
PHYSICAL AND EMOTIONAL DEVELOPMENT
Children with Down syndrome experience the same sequence of physical and hormonal changes associated with puberty as other children their age. The onset of puberty in boys may be slightly delayed, but this is not a major factor. Genital anatomy is comparable to that of boys who do not have Down syndrome.
Scientific information about the fertility of males with Down syndrome is limited. Although evidence has suggested males with Down syndrome have an overall lower fertility rate than the general male population, there have been several confirmed cases of paternity. Contraception should always be used unless a couple has decided on parenthood.
Compared to physical development, there is often a lag in the development of social maturity, self-control, communication, abstract thinking, and problem-solving abilities. The emotional changes characteristic of adolescence are present in pre-teens and teens with Down syndrome. Any adolescent who lives in the community attends school, and is exposed to media will develop an awareness of sexuality. Teenagers and young adults with Down syndrome often express interest in dating, marriage, and parenthood. They can be expected to experience typical adolescent changes in mood and outlook.
GOAL OF A SUCCESSFUL SOCIAL AND SEXUAL EDUCATION PROGRAM
The goal of social and sexual education should be to help individuals with cognitive disabilities develop a healthy and positive social and sexual awareness. Education should empower the individual to make appropriate decisions that contribute to their overall happiness and quality of life.
A comprehensive social development program should address six areas: adult self-care, anatomy and physiology, empowerment and self-esteem, relationships, social skills, and social opportunities.
To be effective, education must be individualized and understandable, focusing not only on the physical reproductive aspects but also on decision-making, cultural norms, peer pressure, relationships, social skills, and opportunities. An ideal curriculum will ensure individuals with Down syndrome understand their bodies, emotions, behaviors, and relationships within their social and cultural environment.
Information about sexual intercourse, as well as other expressions of adult sexuality including parenting, should be factual, realistic, and stress the importance of personal responsibility and community standards for adult behavior.
Men and women with Down syndrome have the same susceptibility to sexually transmitted infections (STIs) as the rest of the population. Use of condoms during sexual intercourse is the best-known form of protection against AIDS, herpes, and other sexually transmitted infections. Sexual education should include information on sexually transmitted diseases and how to reduce the risk of transmitting them.
Parents can start teaching their children certain social readiness skills even at a very young age. Children should be helped to understand the meaning of, and behaviors related to privacy, as well as the concept of ownership. They should be educated about the natural consequences of choices and be given age-appropriate opportunities to make decisions. Parents should also establish home routines of modesty and trust. Examples of home routines include closing bathroom and bedroom doors and not barging in on others.
When it comes to the social development of a person with Down syndrome or other cognitive disability, parents, family members, and friends often need to be the lead network of support. In addition to modeling appropriate social behaviors, these people can help the individual develop a network of friends with and without disabilities by arranging social activities, carpooling, providing meeting places, etc. Parents should have an ongoing dialogue with their child and support persons or relevant professionals in their child’s life.
PREVENTION OF SEXUAL ABUSE
Abuse is more likely to occur when an individual—any individual—is perceived as vulnerable.
Typically, when there is a lack of education in any of the six key components mentioned earlier (adult self-care, anatomy and physiology, empowerment and self-esteem, relationships, social skills, and social opportunities), an exploitive relationship might take hold as an inappropriate means of meeting the person’s need for friends, interesting experiences, sensory and mental stimulation, and a positive self-concept. Ignorance, an experience-poor environment, loneliness, the lack of stimulating activities, and a sense of isolation can all be a breeding ground for increased vulnerability.
Age-appropriate education in protective behaviors should begin in childhood and be reinforced throughout the life of the person with Down syndrome. Individuals with Down syndrome must be taught the boundaries of normal physical interactions in the social sphere, as well as the self-assertion skills to ask for help if necessary. Practicing assertive behaviors and designating trusted individuals with whom to discuss or report questionable activities are important aspects of abuse prevention training.
An independent child who has both experience and success in making decisions and the support of trusted friends and family members will be better equipped to reject the “false friendship” of those who might do him/her harm or take advantage of his/her disability.
WARNING SIGNS OF SEXUAL ABUSE
Some warning signs of sexual abuse may seem obvious:
bleeding or injury around the private areas of the person’s body
a sexually transmitted disease
a urinary tract infection
However, there are many more subtle signs of sexual abuse that are very similar to signs of stress that may be caused by other traumatic events and may or may not be related to sexual abuse. These subtle symptoms may be related to the stress caused by, for example, an illness or death in a family, an impending divorce, academic problems, or even excitement about a trip to Disneyland. Such signs include, but are not limited to:
If you suspect that your loved one is suffering from a sexual abuse trauma, reporting that incident may be mandated and getting professional help would certainly be in order.
It is a wonderful, exciting time for people with disabilities, their families, and the professionals who support them. Many medical advances, educational techniques, and cultural changes have arisen in the last few years. These changes support the hopes and dreams for a satisfying and happy life for individuals with Down syndrome and their families. People of all ages with Down syndrome can and do enjoy a variety of relationships with family members, friends, acquaintances, community members, and even sweethearts and spouses. Social development education and sexuality education lay the groundwork for the relationship opportunities that enrich lives and for the choices that maintain personal safety.
Ms. Walker-Hirsch welcomes your email questions or comments. She can be reached at email@example.com or at her website www.lesliewalker-hirsch.com. There are several excellent resources available for parents on the topic of social and sexual development. A few have been included here and more are available on the NDSS site. To order the CIRCLES program, visit www.stanfield.com.