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.