Sexuality and Menses

Adolescents with Down syndrome often face unique challenges with the onset of puberty. Paternalistic views of sexuality often directed toward individuals with Down syndrome by parents and others may make the individual's transition to adulthood even more difficult. Historically sexuality and reproduction have been discouraged for persons with developmental disabilities such as Down syndrome. Although strict legal guidelines now exist, involuntary sterilization was once commonplace.

All adolescents should be assessed for appropriate level of sexual development, and should receive healthcare counseling concerning sexual issues. The onset of menarche is an important milestone in female adolescent development. Delayed onset of menses may be indicative of a latent medical condition (such as thyroid dysfunction) requiring further investigation. Age at menarche, typical duration of menstrual cycle/flow, and any difficulties such as dysmenorrhea should be recorded. Although solid tumors rarely develop in individuals with Down syndrome, testicular cancer does occur; thus appropriate assessment should be included during office checkups.

Typical parental concerns for adolescents with Down syndrome revolve around unwanted pregnancy, sexual victimization, inappropriate sexual behavior, and inadequate menstrual hygiene. Problems with menstrual hygiene occasionally do develop and may be improved by administration of injectible or oral steroids (birth control pills), which helps to regulate the menstrual cycle and diminish flow (as well as prevent pregnancy). Socialization via family intervention may be necessary to teach appropriate and acceptable sexual behavior in both males and females. Sexual education should include information about contraception and sexually transmitted diseases. Persons with Down syndrome exhibit a wide range of cognitive abilities. Cognitive level should be taken into consideration when providing sex education for such individuals.

Nelson, R.M. (1999). Sterilization of minors with developmental disabilities. American Academy of Pediatrics, 104(2).

Nickel, R.E. (2000). Developmental delay and mental retardation. In R.E. Nickel & L.W. Desch (Eds.). The physician's guide to caring for children with disabilities and chronic conditions (pp 99-115). Baltimore, MD: Brookes Publishing.