The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
666 Broadway, 8th Floor
New York New York 10012
800-221-4602
info@ndss.org 

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 two 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.


NDSS Resources 

External Resources

  • American Association of Sexuality Educators, Counselors and Therapists ( AASECT)
    www.assect.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
  • 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
  • National Information Center for Children and Youth with Disabilities (NICHCY)
    Offers information on pre-adolescents and teens with disabilities
  • Planned Parenthood Federation of America
    www.ppfa.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/about/sexual-health-network
    Offers articles and blog posts on disability and sexuality
  • Leslie Walker-Hirsch, M. Ed., FAAIDD
    lesliewh@computer.net
    Creator of the Circles program of teaching social boundaries to individuals with intellectual disabilities

BOOKS

  • The Boy's Guide to Growing Up. Couwenhoven, Terri. 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 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)
  • The Facts of Life...and More. Walker-Hirsch, L. Baltimore, MD: Brookes Publishing. (2009)
  • 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. ethesda, MD: Woodbine House. (2005)
  • Buddy Walk
  • NDSS Yourway
  • My Great Story