Sexuality & Down Syndrome

Human sexuality encompasses an individual’s self-esteem, interpersonal relationships and social experiences relating to dating, marriage and the physical aspects of sex. Sex education, appropriate for the developmental level and intellectual attainment of individuals with Down syndrome, adds to life quality by engendering healthy sexuality, reducing the risk of sexual abuse, avoiding sexual misunderstandings, preventing disease transmission, preventing unwanted pregnancy and alleviating other problems related to sexual function.

Do Individuals with Down Syndrome Have Sexual Feelings?

In the past, sexuality was not considered an issue for any people with Down syndrome because of the inaccurate belief that intellectual disability (formerly known as mental retardation) produced permanent childhood. In fact, all people with Down syndrome have sexual feelings and intimacy needs. It is important that expression of these feelings in socially acceptable, 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.

Do Children with Down Syndrome Develop Physically the Same Way as Their Peers in the General Population?

Children with Down syndrome experience the same sequence of physical and hormonal changes associated with puberty as other children their age. However, there is often a lag in the development of social maturity, emotional self control, social communication, abstract thinking and problem solving abilities.

Do Children with Down Syndrome Experience the Emotional Upheavals Characteristic of Adolescence?

The emotional changes characteristic of adolescence are also present in pre-teens and teens with Down syndrome, and may be intensified by social factors. Any adolescent who lives in the community, attends school and is exposed to media inevitably develops 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.

What Kind of Sex Education is Appropriate for Individuals with Down Syndrome?

To be effective, education must be individualized and understandable, focusing not only on the physical reproductive aspects, but with strong attention to decision-making, cultural norms, peer pressures, relationships, social skills and opportunities. Positioning sexuality within the context of community life requires the development of personal values and adult responsibilities. An ideal curriculum will ensure that individuals with Down syndrome understand their bodies, their emotions, their behaviors and their 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.

How Can Healthy Sexuality be Encouraged for Individuals with Down Syndrome?

Creating an environment conducive to healthy sexual expression must be considered in designing educational, vocational, social, recreational and residential programs. Positive sexual awareness can only develop through personal empowerment, self-esteem, understanding of social relationships and personal interaction/communication skills. All these factors influence how intimacy needs are met.

Do Women with Down Syndrome Have Any Special Needs or Concerns in Regard To Birth Control?

Approximately 50% of women with Down syndrome are fertile and may use any method of contraception without added medical risk. The method chosen will depend on personal preference, ability to use the contraceptive effectively and possible side effects. Tubal ligation (permanent birth control through surgery) may also be performed without added risk for women with Down syndrome who are in stable medical condition. Many states have laws that control the availability of this procedure to women who have an intellectual or developmental disability. The woman with Down syndrome should be involved as much as possible in decision-making should this option be considered.

Are There Any Special Needs for Individuals with Down syndrome in Regard to Disease Prevention?

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.

How Can a Person with Down Syndrome Be Protected Against Sexual Abuse?

It is highly recommended that age-appropriate education in protective behaviors 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 enlist help if necessary. Practicing assertive behaviors and designating trusted individuals in settings that are frequented with whom to discuss or report questionable activities are important aspects of abuse prevention training.

Do Girls and Women with Down Syndrome Have Normal Menstrual Periods?

Menstruation for girls and women with Down syndrome is no different than for their peers in the general population. On the average, they begin menstruating at age 12 1/2, but may begin as early as age 10 or as late as age 14. Most girls and women with Down syndrome have regular cycles with the same minor irregularities typical of their age peer group.

Alterations in a previously regular cycle may be due to the normal process of aging, or may be a sign of emerging hyperthyroidism. Ongoing irregularity of menstrual cycle, significant pain during menstruation or extreme pre-menstrual symptoms warrant medical examination.

If a Woman with Down Syndrome Becomes Pregnant, Will the Baby Have Down Syndrome?

At least half of all women with Down syndrome do ovulate and are fertile. Between 35 and 50 percent of children born to mothers with Down syndrome are likely to have trisomy 21 or other developmental disabilities.

When is the onset of menopause for women with Down syndrome?

Menopause may occur at a wide range of ages. Typically it takes place after age 40.

Are Males with Down Syndrome Fertile?

Scientific information about the fertility of men with Down syndrome is limited. There have been at least three documented cases where the paternity of a man with Down syndrome was confirmed. It is likely that additional cases will be recognized – especially since more men with Down syndrome have an increased life expectancy, have the opportunity to live in the community, receive treatment for physical and sensory impairments, receive optimum nutrition, and develop intimate relationships. It is not known if the offspring of men with Down syndrome are more likely to have Down syndrome.

It does seem clear that, in general, men with Down syndrome have a significantly lower overall fertility rate than that of other men of comparable ages. An individual’s status can be partially assessed by having a semen analysis (sperm count) done, but this may not be definitive. Contraception should always be used, unless a couple has decided upon parenthood.

Do Boys with Down Syndrome Mature Later Than Their Peer Group In the General Population?

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.

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NDSS thanks special guest author Leslie Walker Hirsch, M.Ed.

 

Social and Sexual Education

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.

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Ms. Walker-Hirsch welcomes your email questions or comments. She can be reached at lesliewh@computer.net 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.


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Additional Resources:

NDSS RESOURCES

EXTERNAL RESOURCES

  • American Association of Sexuality Educators, Counselors and Therapists ( AASECT)
    www.aasect.org
    Promotes an understanding of human sexuality and healthy sexual behavior; website contains a searchable list of certified professionals
  • American Association on Intellectual and Developmental Disabilities
    www.aaidd.org
    Contains articles on sexuality and intellectual disability
  • Center for Parent Resources (CPIR)
    www.parentcenterhub.org
    Offers information on pre-adolescents and teens with disabilities
  • Health Promotion for Women with Disabilities
    nurseweb.villanova.edu/womenwithdisabilities
    Offers resources on women’s issues for women with disabilities.
  • Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities
    ici.umn.edu/products/impact/232
    Contains articles offering perspectives and information; published by the Institute on Community Integration, University of Minnesota
  • Planned Parenthood Federation of America
    www.plannedparenthood.org
    Often supports, through affiliates, educators trained to design and implement sexuality programming for individuals with intellectual disabilities
  • Sexuality Information and Education Council of the United States (SIECUS)
    www.siecus.org
    Provides broad information and advocacy on sexuality issues, sexual health and sexual rights
  • Sexual Health Network – TSHN
    mitchelltepper.com/sexual-health-network
    Offers articles and blog posts on disability and sexuality
  • Leslie Walker-Hirsch, M. Ed., FAAIDD
    www.lesliewalker-hirsch.com
    Creator of the Circles program of teaching social boundaries to individuals with intellectual disabilities

BOOKS

  • Boyfriends & Girlfriends: A Guide to Dating for People with Disabilities. Couwenhoven, T. Bethesda, MD: Woodbine House (2015)
  • The Boy’s Guide to Growing Up. Couwenhoven, T. Bethesda, MD: Woodbine House. (2012)
  • Combating Violence and Abuse of People with Disabilities: A Call to Action.  Fitzsimons, N. Baltimore, MD: Paul H. Brooks Publishing Co. (2009)
  • Couples with Intellectual Disabilities Talk About Living and Loving. Schwier, K. M., Bethesda, MD: Woodbine House. (1994)
  • The Facts of Life…and More. Walker-Hirsch, L. Baltimore, MD: Brookes Publishing. (2009)
  • The Girl’s Guide to Growing Up. Couwenhoven, Terri. Bethesda, MD: Woodbine House. (2012)
  • The Guide to Good Health for Teens and Adults with Down Syndrome. Woodbine House. Chicoine, Brian and McGuire, Dennis. Bethesda, MD: Woodbine House. (2010)
  • Sexuality: Your Sons and Daughters with Intellectual Disabilities. Melberg, Schwier and Hingsburger, Eds. Baltimore, MD: Brookes Publishing. (2000)
  • Teaching Children with Down Syndrome About Their Bodies, Boundaries, and Sexuality: A Guide for Parents and Professionals. Bethesda, MD: Woodbine House. (2005)