The Importance of Social and Sexual Education for Individuals with Down Syndrome
An Interview with NDSS Clinical Advisory Board Member Leslie Walker-Hirsch
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. We talked with her about the importance of a social/sexual education for individuals with Down syndrome.
Within the disability field, the right of individuals with Down syndrome or other cognitive disabilities to express their sexuality has been recognized for over a decade. Please comment on the public’s attitudes toward this issue.
In the past, people thought that individuals with developmental disabilities could not learn to express their sexuality in ways that were both personally satisfying and socially responsible. However, over the past decade or so, there have been great changes in the perception of the public toward people with cognitive disabilities and their social and sexual rights. Some of this has occurred because people with disabilities are now so much a part of every community and neighborhood. We interact with people with disabilities at home, at school, at the mall and when we go out for a meal. They are people we know as people, not just as their disability, and we are able to see people with Down syndrome as individuals who are a lot like us. The media, Hollywood, TV and print coverage now provide a more understanding and informed depiction of the social concerns of this population.
In addition, because of the inclusion movement, individuals with Down syndrome and other disabilities have had the opportunity to develop social skills that are in harmony with those of the culture that they live in. The public is always more accepting if individuals with or without cognitive disabilities display behavior that conforms to socially accepted norms.
What should be the goal of a social/sexual education, and what would you say are the most important components of a successful program?
The goal of a 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.
CIRCLES is a formal program you helped develop for teaching individuals with cognitive disabilities about social relationships and boundaries. What are some practical strategies that parents of individuals with Down syndrome can use to teach these lessons?
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 such behaviors as 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 with other support persons or relevant professionals in their child’s life.
What is the role of sexual education in the 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, 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.
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 unfair advantage of his/her disability.
What are the 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 or even pregnancy. 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, dramatic shifts in sleep, eating, weight or mood, depression, regression to infantile behaviors, voluntary mutism, incontinence, fear of a specific person or setting, aggression, hygiene issues or withdrawal from social activity. If you suspect that your child or adult offspring is suffering from a sexual abuse trauma, reporting that incident may be mandated and getting professional help would certainly be in order.
Do you have any final comments about the relationship opportunities that are available to individuals with Down syndrome?
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 an array 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 firstname.lastname@example.org or at her website www.lesliewalker-hirsch.com. There are a number of 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 Web site. To order the CIRCLES program, visit www.stanfield.com.