Issues of sexuality in Down syndrome
Don Van Dyke, Dianne McBrien and Andrea Sherbondy
As human beings, individuals with Down syndrome have the right to emotionally satisfying and culturally appropriate sexual expression. As patients, they have the right to routine reproductive health care provided to the general population. Cognitive and language disabilities may predispose this population to unwanted pregnancy, sexually transmitted disease, and sexual exploitation. Sex education tailored to cognitive level, learning style, and living arrangements is essential to the education of children and young adults with Down syndrome.
Van Dyke DC, McBrien DM, Sherbondy A. Issues of sexuality in Down syndrome. Down Syndrome Research and Practice. 1995;3(2);65-69.
Issues of sexuality accompany each stage of human development. Sexual tasks for
infants and pre-school aged children include the development of physical and emotional
attachment to parents and other family members; issues for school aged children
are the emergence of modesty and privacy as well as the beginning of masturbation
[Table 1] (Haka-
Ikse and Mian, 1993; Grant, 1995).
Personal safety and self-esteem become important issues for adolescents and young
adults [see Table 1] (Haka-Ikse
and Mian, 1993). Little has been written about psychosexual development
in Down syndrome.
Table 1. Developmental issues in sexuality.
- positive self concept
- intimacy and physical closeness
- modesty and privacy
- personal safety
Ref: Haka-Ikse et al, 1993; Grant, 1995.
There have been major advances in interdisciplinary and preventive medical management
of individuals with Down syndrome. Improved medical care, laws ensuring appropriate
education and related services for the disabled, and slow changes in societal attitudes
have brightened the outlook for individuals with Down syndrome (Van Dyke et al,
1995). An active life, including participation in work, social, and worship
environments, is now possible. As individuals with Down syndrome take their place
in these areas, we can expect some of them to assume the sexual roles that the general
population takes for granted: lover, spouse, parent (Van
Dyke et al., 1995). Review of developmentally appropriate sexual issues
should be part of the medical and psychological evaluation of all individuals with
Sexual Development and Behaviour
All individuals, regardless of disability, are sexual beings. Individuals with Down
syndrome and other mental disabilities who engage in sexual behaviors, however,
may encounter societal prejudice as well as significant parental anxiety (Van Dyke et al.,
1995). Historically common sex-segregated living arrangements in now-defunct
institutions and the absence of available social outlets point to a societal denial
of sexuality in people with disabilities (Edwards,
The development of a secure sexual identity is a difficult task even in the absence
of a physical or mental disability (Grant,
1995). The emergence of sexual behavior in the individual with Down syndrome
alarms some parents and caretakers who may rightly fear that their child's cognitive
deficit makes him or her especially vulnerable: to unwanted pregnancy, sexual exploitation
and abuse, and to sexually transmitted disease.
Masturbation, a rhythmic self-stimulation of the genital area, is a healthy and
normal part of self-discovery (Haka-Ikse
and Mian, 1993). It may also provide self-gratification; it may or may not
prelude sexual intercourse (Monat-Haller,
1992). In some severely mentally disabled individuals, it may also appear
as a form of self-injurious behavior (Van
Dyke et al., 1995). The incidence of masturbation in individuals with Down
syndrome has been reported as 40% in males and as 52% in females (Rogers and Coleman,
1992; Pueschel, 1986).
Rates of masturbation are not significantly higher in individuals with Down syndrome
than those in the general population (Myers
and Pueschel, 1991); reports demonstrate the general population incidence
to be 100% in males and 25% in females by the age of 15 (Ertem and Leventhal, 1995).
Numerous experts in physical and sexual abuse acknowledge that the mentally disabled
individual is particularly vulnerable to sexual exploitation and abuse (Schwab 1992). In a 1987 study by
Elvik et al., 37% of mentally disabled women demonstrated pelvic exam
findings deemed consistent with prior vaginal penetration (Elvik
et al,1987). Schor's review of 87 non-institutionalized mentally disabled
individuals indicated that 50% of mildly disabled subjects had had sexual intercourse
(Schor, 1987; Chamberlain
et al, 1984). Rape or incest had occurred in 33% of mildly disabled subjects
and 25% of moderately disabled subjects (Schor,
Chamberlain et al, 1984). The mentally disabled individual is vulnerable
to sexual maltreatment for several reasons: isolation; communication deficits; small
peer group; and limited mutual support services (Schor,
1987). Loneliness and frustration may drive an individual to accept any
form of individual attention whether it be negative or positive (Schor, 1987). Other contributing factors include
multiple living situations and transient caregivers, some of whom may be paedophiles.
Personal safety education should begin early in childhood (Haka-Ikse and Mian, 1993). Young
children and those individuals with Down syndrome who have severe cognitive or language
impairment may learn best from a good touch/bad touch model : "Just say no
to unwanted advances or touching" (Haka-Ikse
and Mian, 1993; Monat-Haller,
1992). Older children and individuals with mild language and cognitive
deficits may be able to learn the "Circles Concept", a paradigm of physical
and emotional distance (Walker-Hirsch
and Champagne, 1992). In this paradigm, colored circles represent levels
of personal relationship and physical intimacy. Individuals learn appropriate touching
behaviors for each circle of intimacy, and are cautioned that "sometimes a
friend may want to be closer to you than you want. You must explain to your friend
and say "STOP" (Walker-Hirsch
and Champagne, 1992)". Like typical young people, then, students with
Down syndrome need early sex education accompanied by open discussion Because of
significant variations within this population in cognitive levels, learning styles,
living arrangements, and health problems, they require an individualized approach
to sex education (Van
Dyke et al, 1995).
There are no studies of dating patterns or related social behaviors in Down syndrome.
Dating is a normal part of adolescent social development (Fegan et al, l993).
The social skills needed for dating can be taught as part of a life-skills based
et al, l993). Such preparation is best provided before the actual dating
experience. Those who doubt that dating occurs in the Down syndrome population should
read the chapters on "Girls and Sex" and "Marriage and Children"
in the book Count Us In: Growing Up with Down Syndrome. Written by two
young men with Down syndrome, Count Us In provides eloquent proof that adolescents
with Down syndrome have typical teenage concerns:
"And that's part of the big problem to fix that, because I want to have more
social experience with dating. Getting together with boys is okay as friends. But
girls, getting to know them, I'd be happy to do it. ... But, I would like to keep
my experience up by dating again and now I'm making decisions of what my values
are and what kind of things and responsibilities for me to do in the future of marrying
Tami. It's premature but it's okay ... after you have the experience to decide if
you want to get married."
Few papers have described marriage in the Down syndrome population. Studies of marriage
in the mentally disabled population by Edgerton (1983); and by
Koller et al (1988) have shown that individuals with cognitive deficits
who married had only mild mental disabilities. The most troubled marriages were
those in which both partners were mentally disabled (Koller
et al, 1988). Of 38 married individuals with Down syndrome including 35
female subjects, all had spouses without Down syndrome (Edwards, 1988). In this study, couples lived
in an environment that was closely and consistently supported and in some cases
supervised by other family members or advocates (Edwards,
In general, adults with Down syndrome under-use the health care system (Elkins et al, l987).
Women with Down syndrome demonstrate significantly lower usage of gynecological
and reproductive services than women in the general population (Elkins et al, 1987).
While it is recommended that all females with Down syndrome have a baseline pelvic
examination and pap smear between 17 and 20 years of age, this recommendation is
infrequently followed (Rogers and Coleman, 1992). To address this problem, some
care providers have developed special clinics for adults with Down syndrome (Doty, 1995). Men with Down syndrome need to learn
testicular self-examination as their cognitive level permits; likewise, women need
to learn breast self-examination and the necessity for regular gynecological care
et al, 1987; Doty, 1995).
Table 2. Methods of contraception in Down syndrome.
surgical sterilization (vasectomy)
spermicidal foam and gels
surgical sterilization (tubal ligation or hysterectomy)
Ref: Laros, 1993; Elkins, 1990; Doty, 1995
Contraception is often a major concern of parents of individuals with Down syndrome
Dyke et al, 1995). Parents may be uncomfortable discussing sexual and reproductive
issues with a physician (Van
Dyke et al, 1995). Health care providers and professionals need to initiate
structured, nonjudgmental discussion of contraception and to provide clear information
tailored to patient developmental levels (Grant,
Methods of contraception in males and females with Down syndrome are outlined in
Table 2. As in the general population, the only nonsurgical
method available to males is the condom. Because barrier methods require application
at the time of each coitus, they may not be practical for individuals with Down
syndrome who may need supervision in using such devices (Elkins, 1990). There are a number of contraceptive
methods for females including condoms, spermicidal foams and gels, diaphragm, sponges,
cervical cap, IUD, oral contraceptives, Norplant, and Depo-Provera. No form of contraception
is totally contraindicated for individuals with Down syndrome (Schwab, 1992).
Oral contraceptives are frequently used by females with Down syndrome. Contraindications
for this therapy in Down syndrome are the same as in women in the general population;
both absolute and relative contraindications are outlined in Table 3 (Heaton, 1995;
Table 3. Contra-indications for use of oral contraceptives
in Down syndrome.
history of thromboembolic disease
liver disease (hepatitis)
dysfunctional uterine bleeding
cardiac abnormalities (congenital heart disease)
use of anticonvulsant medications
use of systematic antibiotics/antifungal medications
abnormal thyroid function
Ref: Heaton, 1995.
Medroxyprogesterone (Depo-Provera) and Norplant (levonorgestrel implant) are frequently
used depot forms of contraception. In one study, 50% of women receiving Depo-Provera
were amenorrheic; this therapy may considerably simplify menstrual hygiene (Laros, 1993). One year of quarterly Depo-Provera
injections costs approximately $200 (Laros,
1993). Norplant is a progestin-impregnated silastic implant that is usually
inserted into upper arm subcutaneous tissue. It is usually effective for five years
but may be removed sooner (Laros,
1993). Reports of complications requiring removal - including irregular
vaginal bleeding - have dampened some of the initial enthusiasm for Norplant. Cost
is estimated between $300-$400 a year (Laros,
Surgical contraceptive procedures include laparoscopic tubal ligation and total
abdominal hysterectomy. Both procedures require informed consent and involvement
of the patient and parent. A helpful reference regarding sterilization issues appears
in the 1988 publication by the American Academy of Obstetrics and Gynecology on
Ethics. The process of obtaining a sterilization procedure can be emotionally draining
and financially burdensome for parents (Van
Dyke et al, 1995).
Sexually Transmitted Disease
It is important to remember that the condom is the only contraceptive method available
which also helps prevent the transmission of disease. Consistent and correct use
of barrier methods such as condoms may be not practical in the Down syndrome population
(Elkins, l990). Individuals
with Down syndrome may be at increased risk for sexually transmitted disease (STD).
Transmission risks for some STDs are outlined in Table 4.
A 50-90% transmission risk of gonorrhea has been documented (Stone,1994).
While no reports estimate the incidence of HIV infection in Down syndrome, HIV has
been reported in the mentally disabled population (Kastner
et al, 1989). Clearly, other sexually transmitted diseases including syphilis,
chlamydia, herpes simplex, venereal warts, and hepatitis B are potential concerns
in the sexually active individual. In a national study by
Marchetti et al (1990), a total of 45 developmentally disabled individuals
in 11 states were identified as having HIV infection (Marchetti et al, 1990). Risk
factors associated with HIV infection in Down syndrome are identical to those in
the general population and include heterosexual activity, homosexual activity, IV
drug abuse, and contaminated blood transfusions (Simonds
and Rogers, 1992).
Table 4. STD transmission risk per coital episode.
male to female
female to male
Ref: Stone, 1994.
Significantly impaired fertility of both sexes is evident in the Down syndrome population
(Rogers and Coleman, 1992). While males have long been assumed to be sterile, Sheridan
reports one case of a cytogenetically normal male infant that was fathered by a
man with Down syndrome (Sheridan
et al, 1980). Women have impaired but still significant fertility: a number
of reviews document women with Down syndrome carrying pregnancy to term and delivering
infants with and without Down syndrome (Bovicelli
et al, 1982;
Rani et al, 1990). Infants born to mothers with Down syndrome are at
increased risk for premature delivery and low birth weight (Bovicelli
et al, 1982). Pregnancy outcomes obtained from a study of mothers with Down
syndrome are displayed in Table 5. Whether a woman with Down
syndrome constitutes a high risk pregnancy depends largely on cognitive level and
medical status. Obviously, the presence of maternal cardiac, thyroid, or hepatic
disease, as well as seizure disorder, complicates a pregnancy. The high incidence
of congenital heart disease in any offspring with Down syndrome contributes to pregnancy
risk, including stillbirth and neonatal death (Gordon,
1990). Offspring without Down syndrome have a greater than average number
of congenital anomalies (Bovicelli
et al 1982) (see Table 5).
Table 5. Reported results of pregnancy in Down syndrome
Sheridan et al, 1989
1 man with Down syndrome
1 normal male
Bovicelli et al, 1982
26 women with Down syndrome
10 Down syndrome
2 mentally retarded
1 set of premature, nonviable normal twins
1 slightly microcephaly
1 still born
2 abortion, phenotype unknown
Rani et al, 1990
1 woman with Down syndrome
Ref: Sheridan et al, 1989; Bovicelli et al, 1982; Rani et al, 1990.
Only scant information is available on the parenting abilities of individuals with
Down syndrome (Van
Dyke et al, 1995). The issue of parenting by a mentally disabled individual
is a controversial one. Some professionals maintain that children of mildly retarded
couples are probably no worse off than children of individuals who are "classified
as culturally deprived" (Nigro,
1975). Other authors opine that mentally disabled parents may be more likely
to neglect their children through acts of omission but that purposeful abuse may
be infrequent, especially in the setting of adequate societal and family supports
In summary, sexuality is an intrinsic aspect of human development. Individuals with
Down syndrome need individualized instruction and education to develop appropriate
sociosexual behaviors. While individuals with Down syndrome have unique and sometimes
complex medical needs, they still require routine reproductive health services recommended
for the general population including urological care for men, gynecological care
for women, and preventive medical services. Education and counseling to prevent
unplanned pregnancy, abuse, and sexually transmitted disease should be part of the
routine medical care and education for individuals with Down syndrome. All individuals
with Down syndrome have the right to develop and express sexuality in an emotionally
satisfying and socially appropriate manner. It is the responsibility of care providers
to facilitate communication, research, and support services to accomplish this goal.
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DSE's Reading and Language Intervention for Children with Down Syndrome (RLI) is an evidence-based programme designed to teach reading and language skills to children with Down syndrome.
RLI incorporates best practice in structured activities delivered in fast-paced daily teaching sessions. It was evaluated in a randomised controlled trial and found to improve rates of progress compared to ordinary teaching.
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