Sex Disabil (2009) 27:27–34
DOI 10.1007/s11195-009-9107-2
ORIGINAL PAPER
Sexuality in Adolescents with Intellectual Disabilities
Aysegul Isler Æ Fatma Tas Æ Dilek Beytut Æ Zeynep Conk
Published online: 29 January 2009
Ó Springer Science+Business Media, LLC 2009
Abstract Purpose This study aims to characterize adolescent development and knowledge, opinions, and attitudes toward sexuality in adolescents with intellectual disabilities.
Methods Sixty students in occupational school with mild to moderate intellectual disabilities, aged between 15 and 20 years, formed this study’s sample from Turkey. The data
taken from questionnaires was evaluated with the SPSS 13.0 package program. Results
These results demonstrate that 51.7% of adolescents have not been educated professionally
with regard to sexuality. In addition, 46.7% of them have never talked about sex with their
parents. The level of knowledge among adolescents of both sexes is quite low. Most
adolescents do not know the male and female differences in reproductive organs. While
more than half of adolescents describe sex as kissing and intimate touching, about half of
them think only married couples have sex. Conclusion Adolescents with intellectual disabilities in this study have very low levels of correct information about sex and the
characteristics of the adolescent stages of development.
Keywords
Adolescent with intellectual disability Sexuality Turkey
Introduction
Physical growth and sexual maturation are prominent features of adolescence [1]. Sexuality begins at birth and emerges throughout childhood for all children without regard to
ability [2]. Sexuality, an essential aspect of one’s personality and sense of self, offers a
A. Isler (&)
Department of Pediatric Nursing, Antalya School of Health, Akdeniz University,
07058 Antalya, Turkey
e-mail: [email protected]
F. Tas D. Beytut
Department of Pediatric Nursing, School of Nursing, Ege University, Izmir, Turkey
Z. Conk
Department of Pediatric Nursing, School of Nursing, Ege University, Izmir, Turkey
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gateway to intimacy that includes feelings of comfort, security, support, love, and affection
[3].
Persons with intellectual disabilities have the same sexual needs as the average person
[4]. However, people with disabilities often describe themselves as being perceived as
asexual, child-like, and in need of protection by society and by their physicians [1, 2]. In
contrast, some view persons with disabilities as aggressively sexual with uncontrollable
urges [1].
Sexual behavior for people with intellectual disabilities has been a national and international health concern. The sexuality of individuals with intellectual disabilities is often
shaped by inaccurate information and unpleasant experiences such as pregnancy, sexually
transmitted diseases, and human immunodeficiency virus (HIV) infection that could
directly influence adolescent health [2, 5–7].
Children with disabilities are at risk for being socially isolated and have fewer
opportunities to interact with and learn from peers [2]. Several investigators have reported
a lack of knowledge about sexuality among adolescents with disabilities in comparison to
the general population. [7–10]. Because these adolescents are often isolated from others of
their age, it has been speculated that they may lack opportunities to learn about their
sexuality or to engage in social activities or sexual experimentation [8]. Consequently,
children with disabilities need basic biological information about their bodies [2].
Sexuality education empowers children with disabilities to enjoy personal sexual fulfillment and to protect themselves from abuse, unplanned pregnancies, and sexually
transmitted diseases. When sexuality is discussed routinely and openly, conversations are
easier to initiate, more comfortable to continue, and more effective and informative for all
participants [1].
The role of health care providers includes prompting families and caregivers to provide
basic education about sexuality. Sex education comprehensible to children and youths with
disabilities sets the stage for a healthier, safer, socially acceptable, and more fulfilling
sexual life in adulthood [2, 11–13].
Knowledge, opinions, and attitudes about the sexuality of adolescents with disabilities’
will be helpful to guide health care professionals in educating this group. Therefore, this
study aimed to determine characteristics of the development of adolescent knowledge,
opinions, and attitudes regarding sexuality in adolescents with mental disability.
Research Questions
The research questions explored in this study were:
1. What is the level of knowledge regarding adolescent stages in adolescents with
intellectual disabilities?
2. What is the level of knowledge regarding the sexuality of adolescents with intellectual
disabilities?
3. What is the difference between girls’ and boys’ knowledge levels regarding sexuality?
Methods
This descriptive study sought to determine characteristics of the development of adolescent
knowledge, opinions, and attitudes regarding sexual development in adolescents with
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29
disability. The study investigated adolescents with mild to moderate intellectual disabilities, 15 years old and above, who were training in occupational school.
Sample
This study was conducted in an occupational school in Turkey. This school accepts mildly
and moderately students with intellectual disabilities 15 or older, who completed elementary education. In Turkey, elementary education is 8 years and is obligatory. The
study’s sample included 60 students with intellectual disability who chose to participate
and were able to answer the questionnaire.
Materials
A questionnaire developed by the researchers was used in data collection. In the first
section of the form, there were five open-ended and multiple choice questions asking for
the socio-demographic data of the adolescents (measuring education on sexuality, consultation on sexuality, where and who provided education, knowledge of genitals,
menstruation, and pregnancy, masturbation, sexuality, etc.). Answering the questionnaire
took approximately 30 minutes. The questionnaire also covered development relating to
adolescence. The questionnaire was filled out by the researchers, face to face with participants. A pilot study was completed for 10 adolescents with intellectual disabilities in
order to determine the clarity of the questionnaire, and unclear questions were updated. All
students were trained on adolescence and sexual development issues by the researchers
after the data collection process. Training included characteristics of the adolescence,
female and male genital organs, menstruation period, pregnancy, masturbation, sexual
intercourse, and prevention of sexual abuse. This training required two 30 minutes
sessions.
Method of Data Processing
Data were evaluated for percentages and k square using the SPSS 13.0 package program;
P \ 0.05 was accepted as significant.
Ethical Considerations and Aspects
Required legal permission and consent was obtained from the school ethics committee to
be able to conduct the research. Before implementation the teachers, adolescents, and their
families were given information about the study. A comfortable and quiet environment was
provided for the adolescent to complete the questionnaire. Review and mandated laws with
related guidelines when establishing the possibility of adolescents receiving inappropriate
touching were followed.
Results
Of the 60 adolescents with learning disabilities, 22 girls (36.7%) and 38 boys (63.3%) at
the ages of 15–20 years participated in this study. The mean age of the adolescents was
17.4 ± 1.4 years. Of the adolescents, 27 (45.0%), were between 15 and 17 years and 33
(55.0%) were between 18 and 20 years.
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Of the adolescents participating in the study, 51.7% stated that they did not receive any
education on sexuality; 43.3, 21.7, 18.4, and 16.6% of adolescents received information
about sexuality from their families, media/internet, school, and friends, respectively.
Moreover, 46.7% of adolescents did not speak about sexuality with their families, while
15% of them spoke about sexuality with their family easily and 38.3% of them only answer
questions pertaining to this issue when asked.
Among boys, 65% did not know menstruation was a characteristic of development only
related to girls. Adolescents in the study group exhibited a very low level of knowledge
regarding the characteristics of adolescent development such as growth of underarm and
pubic hair, appearance of acne, faster growth, and weight gain (Table 1).
There was difficulty in identifying gender-specific differences in reproductive organs. In
particular, 65.8, 63.2, and 42.1% of boys were not able to identify the testis, scrotum, and
penis, respectively (Table 1). Girls were significantly more adept in ascribing the uterus,
testis, and ovaries to the correct gender (P \ 0.005).
Half of boys and 45% of girls in the study group thought that menstruation was part of
having a baby. Furthermore, 50% of girls and 34.2% of boys identified masturbation as
‘‘satisfaction by hand’’. In this group, 18.4% of boys thought that only males engage in
masturbation. In addition, 40.9% of girls and 18.4% of boys knew that engaging in
masturbation in public is not appropriate behavior (Table 2). In this report, 55.2% of boys
and 18.2% of girls stated that they masturbated.
While 40.9% of girls and 44.7% of boys defined sex as kissing lips, 40.9% of girls and
36.8% of boys defined it as sexual intercourse. Half of adolescents stated that only married
Table 1 Distribution of adolescent knowledge about characteristics of adolescent development
Characteristics
Breasts enlarge
Growth of underarm hair
Girls (n = 22)
Boys (n = 38)
Known
Known
Unknown
P
Unknown
100.0
0.0
86.8
13.2
54.5
45.5
31.6
68.4
Voice changes
68.2
31.8
89.5
10.5
P \ 0.05
Facial hair growth
54.5
45.5
84.2
15.8
P \ 0.05
Onset of acne
27.3
72.7
50.0
50.0
Growth of pubic hair
31.8
68.2
36.8
63.2
Onset of menstruation
81.8
18.2
39.5
60.5
P \ 0.05
Increased shoulder width
31.8
68.2
78.9
21.1
P \ 0.05
P \ 0.05
Increased hip size
68.2
31.8
39.5
60.5
Testes enlarge
50.0
50.0
52.6
47.4
Faster growth, especially height
36.4
63.6
31.6
68.4
Knowledge of genitals
Uterus
90.9
9.1
57.9
42.1
P \ 0.05
Testis
68.2
31.8
34.2
65.8
P \ 0.05
55.3
Tubes
54.4
45.5
44.7
Ovary
68.2
31.8
36.8
63.2
Vagina
50.0
50.0
42.1
57.9
Scrotum
36.4
63.6
36.8
63.2
Penis
81.8
18.2
57.9
42.1
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P \ 0.05
Sex Disabil (2009) 27:27–34
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Table 2 Adolescents knowledge and opinions about some sexual issues
Knowledge and opinions
Girls (n = 22)
Boys (n = 38)
n
n
Why do girls menstruate?
Due to internal organ bleeding
5
22.7
4
10.5
10
45.5
19
50.0
To make your blood clear
2
9.1
5
13.2
For health
4
18.2
5
13.2
I don’t know
1
4.5
5
13.2
For having a baby
What is masturbation?
11
50.0
13
34.2
Adolescent stage
Satisfaction with hand
4
18.2
11
28.9
Erection of penis
2
9.1
6
15.8
I don’t know
5
22.7
8
21.1
18.4
Opinions about masturbation
Only boys masturbate
1
4.5
7
Shameful
–
–
3
7.9
Harmful to do it every day
3
13.6
4
10.5
Inappropriate behavior to do in public places
9
40.9
7
18.4
After masturbation, one needs to take abdesta
–
–
4
10.5
I agree with all of the above
5
22.7
5
13.2
I don’t know
4
18.2
8
21.1
44.7
What is sex?
Kissing
9
40.9
17
Intimate touching
4
18.2
7
18.4
Sexual intercourse
9
40.9
14
36.8
47.4
Opinions about sex?
10
45.5
18
It is done to have a baby
It is only done after marriage
9
40.9
6
15.8
Every adolescent can do it
3
13.6
14
36.8
Develop a baby inside the uterus
8
36.4
14
36.8
Only married couples can have a baby
2
9.1
9
23.7
Conception
3
13.6
6
15.8
I agree with all of them
9
40.9
9
23.7
22
100.0
38
100.0
Opinions about being pregnant?
Total
a
Abdest means washing the whole body according to Muslim religious rules. After sexual intercourse and
masturbation, both men and women, as well as women at the end of menstruation, are required to perform
abdest
couples can engage in sexual intercourse. Results showed that 36.8% of boys think adolescents can have sex before marriage. Most adolescents have correct information about
pregnancy; in contrast, 9.1% of girls and 23.7% of boys thought that only married couples
can have a baby (Table 2).
When asked about sexual experiences, 30% of adolescents had experienced kissing,
3.3% of them had sexual intercourse, and 66.7% of them did not have any experience in the
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area. The group reporting to have had sexual intercourse consisted of boys (n = 2). When
adolescents were asked which sexual subjects they want to receive information on, 16.6%
of them listed contraceptives, and 14, 13.4, and 8.3% of them named male and female
genital organs, sexually transmitted diseases, and pregnancy, respectively. While 6.6 and
5% of them chose to be educated on masturbation and menstruation subjects, respectively,
26.9% of them reported that they were educated on all subjects.
Discussion
This study found that adolescents with intellectual disabilities do not have enough
knowledge about the characteristics of the development of adolescent sexuality. It has been
suggested that sexual education should start in the family and continue at school as a
formal sexual education program, supported by health care professionals [14, 15].
Slightly over half of adolescents (51.7%) reported not being given any professional
education about sexuality. Close to half of them (43.3%) were informed about sexuality by
their families. It is encouraged that adolescents with disabilities be informed about sexual
issues by their families. In addition, families must be trained and supported by the health
care professionals. The 46.7% of adolescents in this study who never converse with their
families about sexuality received their knowledge from friends, the internet, and the media.
These sources provide a barrage of misinformation on sexuality issues.
An education program for adolescents with disabilities must cover topics such as body
parts, as well as physical and physiological changes [2]. As assessed in this study, students
with intellectual disabilities want information about male and female reproductive organs,
anatomy, and physiology of the reproductive system, etc. Our study demonstrated that, a
considerable majority of these adolescents have some incorrect knowledge about the
characteristics of adolescent development as pertains to gender. For instance, 65% of boys
did not know that menstruation is unique to girls. There was little knowledge regarding
pubertal development such as growth of underarm and pubic hair, the appearance of acne,
faster growth, and weight gain. There was a lack of knowledge pertaining to male and
female body parts (Table 1). Parents, educators, and health professionals should provide
these topics in their sexual education. Students with intellectual disabilities must be able to
answer relevant questions in the questionnaire.
Menstruation is seen in adolescents with disabilities with normal hormonal development. In particular, adolescent girls must be trained in menstruation hygiene. Complex
feelings can arise, including confusion, shame, fear, and guilt, or possibly fear of catching
a bad disease [14, 16]. However, in our study, half of adolescents thought menstruation is
necessary to be pregnant or healthy; other adolescents had incorrect knowledge about
menstruation, ascribing it to bleeding organs. In Turkish society, some think menstruation
means ‘‘getting dirty’’, or ‘‘throwing away dirty blood from the body.’’ In a study where we
consider that almost half of adolescents gained information pertaining to sexual education
from their families, it is thought that those myths may pass from their families.
Masturbation changes in consequence during the transition from childhood to adolescence. After sexual intercourse and masturbation, both men and women (also women at the
end of menstruation) are required to perform abdest according to the Muslim religion.
Abdest means washing of the whole body according to Muslim rules. Due to masturbation
and sexual activity, 10.5% of boys cited abdest as necessary. In Turkish society, religious
rules such as these are taught by families since childhood. In our study, half of girls and 1/3
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33
of boys had correct information about masturbation. The number thinking only men
masturbate was very low (Table 2).
The sexual behavior of adolescents with disabilities is not often discussed. In contrast,
studies on romantic relations in this population are relatively limited [9]. In our study, over
half of adolescents described sex as kissing and intimate touching (Table 2). The families
and teachers explained them only married couples have sex. So half of boys and girls think
only married couples have sex. Only 3.3% of adolescents in this study group reported
having sexual intercourse, and these were only men. Even though 3.3% of boys had sexual
experience, half of boys in this study group mentioned that all adolescents can have sex.
Particularly in this group, one should be careful to prevent sexual abuse, unplanned
pregnancy, and sexually transmitted diseases.
The adolescents participating in our study wanted to get information about contraceptives, male/female genital organs, sexually transmitted diseases, pregnancy, masturbation,
menstruation, and menstruation hygiene. The World Health Organization described sexually transmitted diseases, hygiene, sexual abuse, and unplanned pregnancy as social
health problems. It has therefore been suggested to determine convenient approaches for
developing the sexual health of all adolescents [14, 17–19].
Sexual abuse is one of the most important abuse types in adolescents with disabilities.
Due to a lack of judgment and evaluation, they can accept a proposal for sexual intercourse
or sexual approach without understanding that they are being exploited for sexual abuse.
Studies show that adolescents with disabilities not having enough sexual education misunderstand more than adolescents without disabilities [14, 18, 20]. When adolescents
participating in this study were asked whether or not anyone (‘‘stranger’’) touched their
genital organs without their request, 20 of them answered ‘‘yes’’. It is considerably
important that adolescents with disabilities be educated about their bodies to decrease
potential for sexual abuse.
As a conclusion, adolescents with intellectual disabilities may have very low levels of
correct information about sex and the characteristics of the adolescent stages of development. This unique group must be informed by their families, teachers, and health care
professionals.
Acknowledgments We thank all of the participants who gave their informed consent for the study. This
study received external funding from Akdeniz University Scientific Research Project Unit.
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