SESA - Spring '02 Reference Shelf - Sexuality and Puberty
By Dr. William Schwab, Associate Professor Department of Family Medicine and
Practice University of Wisconsin
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, help
in engendering healthy sexuality, preventing unwanted pregnancy and diseases
and in alleviating other problems related to sexual function.
Q. Do individuals with Down syndrome have sexual feelings?
A. In the past, sexuality was not considered an issue for young people
with Down syndrome because of the inaccurate belief that mental retardation
was equivalent to permanent childhood. In fact, all people with Down syndrome
do have intimacy needs, and it is important that these be recognized and
planned for in education, residential and other programs and settings.
Q. Do children with Down syndrome develop physically the same way
as their peers in the general population?
A. Children with Down syndrome experience the same sequence of physical
and hormonal changes associated with puberty as other children their age.
Q. Do children with Down syndrome experience the emotional upheavals
characteristic of adolescence?
A. The emotional changes characteristic of adolescence are
also present in children 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.
Q. What kind of sex education is appropriate for individuals with Down
syndrome?
A. To be effective, education must be individualized and understandable,
focusing not only on the physical reproductive aspects, but also positioning
sexuality within the context of all interpersonal relationships. An ideal
curriculum will ensure that the individual's understanding of relationships,
sexual intercourse and parenting is factual, realistic and socially acceptable.
Q. How can healthy sexuality be encouraged for individuals with Down
syndrome?
A. Creating an environment conducive to healthy sexual expression
must be considered in designing educational, vocational, recreational and
residential programs. Positive sexual awareness can only develop through
self-esteem, understanding of social relationships and personal interaction/communication skills. All these factors influence how intimacy needs are met.
Q. Do women with Down syndrome have any special needs or concerns
in regard to birth control?
A. 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. Surgical sterilization may also be performed
without added risk for women with Down syndrome who are in stable medical
condition; however, availability of this procedure to women who are developmentally
disabled may be controlled by state law.
Q. Are there any special needs for individuals with Down syndrome
in regard to disease prevention?
A. Men and women with Down syndrome have the same susceptibility
to sexually transmitted diseases 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 diseases.
Q. How can a person with Down syndrome be protected against sexual
abuse?
A. It is highly recommended that age-appropriate education
in protective behaviors should 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.
FEMALE SEXUALITY IN DOWN SYNDROME
Q. Do girls with Down syndrome have normal menstrual periods?
A. Menstruation for girls with Down syndrome is no different than
for their peers in the general population. On the average, they begin menstruating
at age 12.5, but may begin as early as age 10 or as late as age 14 without
being in any way abnormal. Most girls with Down syndrome have regular cycles
with the same minor irregularities typical of their peer group.
Q. If a women with Down syndrome experiences major irregularities
of the menstrual cycle, what problems with this point to other than pregnancy?
A. 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 warrants medical examination.
Q. If a woman with Down syndrome becomes pregnant, will the baby
be normal?
A. 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 will have trisomy 21 or other developmental difficulties.
Q. When is the onset of menopause for women with Down syndrome?
A. Menopause may occur at a wide range of ages. Typically it
takes place after age 40.
MALE SEXUALITY IN DOWN SYNDROME
Q. Are males with Down syndrome fertile?
A. Scientific information about the fertility of men with Down syndrome
is limited. While most textbooks indicate that no man with Down syndrome
is known to have fathered a child, geneticists in England recently reported
a case in which the paternity of a man with Down syndrome was confirmed.
It is likely that additional cases will be recognized – especially
as more men have the opportunity to live in the community and develop intimate
relationships. It is not known if the offspring of men with Down syndrome
are more likely to have Down syndrome or other anomalies. It does seem clear
that, in general, men with Down syndrome have a 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 done, but this may not
be definitive. Therefore, if a couple desires pregnancy prevention, contraception
should always be used.
Q. Does the boy with Down syndrome mature later than his peer group
in the general population?
A. 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.
SUMMARY
* People with Down syndrome experience the same range of sexual feelings
as the general population.
* Teenagers with Down syndrome undergo the same changes at puberty as all
adolescents, though these changes may be slightly delayed for boys with
Down syndrome.
* There is at least one known case of a man with Down syndrome fathering
a child. While the overall fertility of men with Down syndrome may be reduced,
it is still advisable that couples use contraception whenever pregnancy
prevention is desired.
* At least 50 percent of women with Down syndrome are fertile. Healthy females
can use contraception without added medical risk.
* Education is an appropriate and highly desirable component in developing
positive sexual awareness for the individuals with Down syndrome.
Reprinted with permission by the National Down Syndrome Society. Through
education, research and advocacy, NDSS works to ensure that all people with
Down syndrome have the opportunity to achieve their full potential. For
more information call (800) 221-4602 or visit our web site at http://www.ndss.org/main.html
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