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Sexuality Education and Intellectual Disability: Time to Address the Challenge

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Sexuality Education and Intellectual
Disability: Time to Address the Challenge

Brad McDaniels & Allison Fleming

Sexuality and Disability

A Journal Devoted to the Psychological
and Medical Aspects of Sexuality in
Rehabilitation and Community Settings

ISSN 0146-1044
Volume 34
Number 2

Sex Disabil (2016) 34:215-225

DOI 10.1007/s11195-016-9427-y

1 23
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Sex Disabil (2016) 34:215–225
DOI 10.1007/s11195-016-9427-y

COMMENTARY

Sexuality Education and Intellectual Disability:

Time to Address the Challenge

Brad McDaniels1 • Allison Fleming2

Published online: 9 January 2016

 Springer Science+Business Media New York 2016

Abstract The purpose of this article was to examine the current status and effectiveness
of sexual education curricula for individuals with intellectual disabilities (ID). To obtain a
complete picture of extant literature focused on sexuality education for individuals with
ID, a comprehensive review of the literature published in social science databases from
1995 to 2015 was performed. Articles that were deemed appropriate, based on the thorough
review of the effects of ineffective sexual education and a review of current options, were
analyzed. The final sample included 92 articles. The results demonstrated that, as a result
of inadequate sexual education, individuals with ID are at a greater risk of sexual abuse,
STD, and misinformation. Thorough examination of the available literature resulted in the
conclusion that formal, individualized, and specific sexual education for individuals with
intellectual disabilities is lacking. Considering the paucity of published data and the
absence of appropriate, population-specific, and empirically validated sexual education
content for individuals with intellectual disabilities, changes to the current approach are
strongly indicated.

Keywords Education
Sexual abuse
Sexual education
Intellectual disability
Sexual

knowledge
United States

& Brad McDaniels

Bradley.mcdaniels@uky.edu
Allison Fleming
Apf5208@psu.edu
1
Early Childhood, Special Education, and Rehabilitation Counseling, University of Kentucky,
229 Taylor Education Building, Lexington, KY 40506, USA
2
Department of Rehabilitation and Human Services, The Pennsylvania State University,
330 Cedar Building, University Park, PA 16801, USA

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Introduction

Sexual education is an important part of the development of every adolescent. Consider-

able challenges exist in providing effective and appropriate sexuality education for ado-
lescents with intellectual disabilities (ID); including lack of training of school personnel
and lack of adequate materials suitable to meeting the special needs of students [44]. As
children begin to mature and progress through the stages of puberty, they begin to expe-
riences new feelings and desires that need to be acknowledged and addressed. According to
Breuss and Greenberg [8], sexuality is characterized by a set of behaviors, which include
physical, emotional, and social interactions. Beyond these behaviors lie the psychological
manifestations, which affect one’s self-concept. Most adolescents are afforded the
opportunity to receive sexual education in mainstream classroom settings, but for those
with ID, current approaches appear to be insufficient.
There appears to be a general consensus regarding how to approach sexual education in
the general population, but effective sexual education for students with ID is better
characterized by reluctance and confusion [24]. For decades, individuals with ID were
viewed as being incapable of making appropriate decisions regarding sexuality and, as a
result, were often punished, sterilized, and institutionalized to prevent reproduction [21].
While deinstitutionalization in the 1970s resulted in more just and humanitarian treatment
of individuals with ID, it led to new questions regarding appropriate education for this
population.
According to the National Dissemination Center for Children with Disabilities [29],
intellectual disability, previously identified as mental retardation prior to the passage of
Rosa’s Law in 2010, is a term that is used to define an individual who has limitations in
mental functioning and adaptive skills such as communicating, self-care, and social skills.
The World Health Organization’s (WHO) Working Group on the International Classifica-
tion of Diseases (ICD) [47] defines intellectual developmental disability (IDD) as a group of
developmental conditions characterized by significant impairment in cognitive functions,
which are associated with limitations of learning, adaptive behavior, and skills. The WHO
further classifies intellectual disability according to clinical severity (e.g., mild, moderate,
severe, and profound). Lastly, according to the American Association on Intellectual and
Developmental Disabilities [4], intellectual disability is defined as being characterized by
significant limitations both in intellectual functioning and in adaptive behavior as expressed
in conceptual, social, and practical adaptive skills originating before the age of 18. All of the
accepted definitions tend to agree on the basic limitations of individuals with intellectual
disabilities. As a result of these limitations, individuals with intellectual disabilities learn
and develop more slowly than typical children but they do learn and develop.
Individuals with ID are presented with challenges regarding sexuality that are different
from their non-disabled peers [32]. Individuals with ID may lack the decision-making
capacity, experience, and commensurate skills necessary to form healthy relationships and
establish appropriate sexual boundaries, which may result in sexual exploitation and other
negative consequences [39].
Studies indicate that most adolescents with ID possess a low level of knowledge about
sexuality and have fewer opportunities to learn about sexuality [10, 25, 28]. While the
necessity of both effective and appropriate sexual education curricula for those with ID is
well established, there exists much debate regarding the availability of empirically based
and appropriately standardized options. [16] posits that sexuality education for individuals
with ID has been incomplete and even non-existent. Of the available programs, most focus

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on the acquisition of knowledge about sexuality, which is an integral piece for any sex-
uality education curricula, but fail to address the challenges associated with making
informed choices and appropriate decision-making [26]. Finally, if an appropriate,
empirically-based sexual education program is available and selected, there is still the
challenge of how to incorporate it into the curriculum on a broad, systemic level. As
individuals with ID mature and enter into adult level societal roles (e.g., work, family,
school.), it becomes even more important to ensure that appropriate sexual education has
occurred, as this facilitates a more effective transition.
The purpose of this paper is to review the literature on sexuality education for ado-
lescents with ID to determine the effectiveness, appropriateness, need, and availability.
These questions were explored through a content analysis of relevant published, peer-
reviewed articles from 1995 to 2015. The methodology and discussion of the key findings
are presented below, followed by a discussion of the implications of this review for
research, curriculum development, and policy.

Literature Review Methodology

Relevant articles were gathered by way of a comprehensive search of social sciences

databases in an attempt to capture all relevant literature (Academic Search Complete,
CINAHL, Communication and Mass Media, ERIC, Health Source, MasterFile, Medline,
Psychology and Behavior Source Collections, Psych Info, and Sociological Collections).
The search was restricted to full-length, English, peer-reviewed articles with abstracts
published between 1995 and March 2015. Considering the differences among various
countries regarding the application of sexual education, the focus of the review remained
on the United States and similar western societies. The search was limited to 1995–2015
because the attempt was to demonstrate that over the past 20 years little has been done to
address the challenge of implementing sexual education for individuals with ID. The
search could have been extended further back, but there was little additional information
that would have added to what was included.
The search terms included: ‘‘intellectual disability’’ along with several related terms
(e.g., ‘‘cognitive impairment(s)’’, ‘‘mental retardation’’, and ‘‘learning disabilities’’), cou-
pled with the terms ‘‘sexual education’’, ‘‘sex ed’’, and ‘‘sexual education curricula’’.
Qualitative, quantitative, and review articles were included if they met the inclusion cri-
teria of addressing sexuality education for individuals with ID, the reasons why sexuality
education is imperative, and were published from 1995 to 2015. The initial search resulted
in 130 articles for initial review. Those articles that did not directly address sexual edu-
cation curricula, the ID population, the consequences of lack of formal sexuality education,
included unrelated disability types, were not peer-reviewed, or not written in the English
language were systematically discarded. Furthermore, several studies dealt with sexuality
but lacked the focus sexual knowledge, and thus were excluded from the final sample.
In an additional effort to identify relevant articles that were not discovered via the
electronic word search, the references of each selected article were reviewed for additional
selections. The comprehensive search returned 130 articles matching the search criteria and
an additional 20 articles were retrieved from the reference lists of the selected articles.
Articles were selected that specifically addressed the consequences of inadequate sexual
education for individuals with ID or discussed currently available curricula with emphasis
on effectiveness. After reviewing the search results and appraising the appropriateness of
each article, based on the criteria listed above, it was determined that 92 articles fit into the

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scope of the current paper. After accounting for redundancy, the final sample utilized
within this article was established. Articles addressed two major themes related to sexual
education for individual with intellectual disability: the need for better instructional
methods (need for change) and an explanation of current educational approaches. The
following is a synthesis of the literature in this area.

The Need for Change

Research has consistently shown that children and adolescents with ID have an increased
risk of multiple forms of abuse. Studies addressing the issue of sexual abuse in children and
adolescents with ID confirm that there is a significantly higher rate of sexual abuse in this
population than in non-disabled cohorts (see Table 1). While the findings vary in the
relative incidence of sexual abuse, the problem is well defined. Sullivan and Knutson [38],
through an epidemiological study, determined that children and adolescents with IDs had a
4 times greater risk of sexual abuse than children without ID. Spencer et al. [37] found
similar results, concluding that sexual abuse was 4–8 times higher for individuals with ID
compared with non-disabled peers. The results of a meta-analysis performed by Jones et al.
[20] revealed a 4.6 times greater risk of sexual abuse among adults with ID. In addition,
Servais et al. [34] demonstrated that women with ID were at a 3.5 times greater risk of
sexual abuse. While the literature reports the increased risk of sexual abuse among indi-
viduals with ID, many studies highlight additional concerns of inadequate sexual educa-
tion, demonstrating a need for change in the approach to providing sexual health
information to students and young adults with intellectual disabilities.
Ailey et al. [2] found that the absence of the ability to develop healthy and appropriate
sexuality may result in a variety of mental disorders (e.g., anxiety, depression, and

Table 1 ID and sexual abuse

References Study design Subjects Results

Spencer et al. Quantitative, retrospective, 199,729 birth records 8 times greater rate of sexual
[37] secondary data analysis followed for 19 years abuse rates in subjects with
learning disabilities than
those without
Sullivan and Quantitative, comparative, 50,278 students with and 4 times greater rate of sexual
Knutson secondary data analysis without disabilities abuse in subjects with
[38] mental retardation (sic)
than those without
Akbas et al. Quantitative, matched 40 subjects (7–16 years 50 % of the MR group
[3] control comparison old). 20 with showed evidence of
mild/moderate MR and vaginal penetration vs.
20 controls. only 15 % of the control
group
Balogh et al. Quantitative, retrospective 43 in-patients subjects with 14 % of patients experienced
[6] case note review ID over 5 year period documented sexual abuse
Jones et al. Meta analysis S17 studies including 14.5 % of ID cohort
[20] 10,663 subjects with experienced sexual abuse;
varying disabilities those with ID are at a 4.6
times greater risk of sexual
abuse than those without
ID

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impaired self-esteem) as well as putting individuals with ID at risk for sexual abuse and
sexually transmitted diseases (STDs). The serious ramifications for those with ID if
appropriate sexual education does not occur were illuminated by Gougeon [16] as mis-
informed and uninformed individuals, an increased risk of sexual abuse, exploitation, and
increased risk for sexually transmitted diseases (STDs). Due to the paucity of data on the
incidence of STDs among individuals with ID, it is difficult to accurately ascertain the
scope of the problem; however, the potential risks are nevertheless significant. McGillivray
[27] reported that in interviews with individuals with ID, 68 % believed that taking oral
contraceptives lowered the risk of contracting STDs and that if one was acquired, it was
just ‘‘bad luck.’’ Furthermore, McCabe [25] and Murphy and O’Callaghan [28] found that
most individuals with ID showed poor knowledge of safe sex practices, which represents a
public health concern. McGillivray [27] reported that individuals with ID had little to no
understanding of the correct use of condoms. Galea et al. [12] reported that those with ID
demonstrated poor overall knowledge of sexuality, particularly in the areas of STDs and
safe sex practices (see Table 2). According to Whitehouse and McCabe [42], the lack of
basic understanding of the consequences of unprotected sex demands better sex education
for individuals with ID. There appears to be a disconnect between the need for and benefits
of sexuality education and the development and dissemination of empirically validated and
effective sexual education curricula for those with ID.

Current Approaches to Sexuality Education

With the passage of the Individuals with Disabilities Education Act (IDEA) in 1975,
children with disabilities were guaranteed a free, appropriate public education in an
environment that is as inclusive as possible. The issue is not that individuals with ID fail to
receive educational opportunities; the challenge lies in the method of delivery and the
availability of adequate curricula (see Table 3). Adolescents with disabilities are generally
included in mainstream sexual education classes and have access to the available infor-
mation but, according to Walker-Hirsch [41], the pace of the instruction and the emphasis
of the discussions are not sufficient to meet the needs of those with cognitive disabilities.
Based on their findings, Schaafsma et al. [32] concluded that many current programs are
unlikely to be effective. In an article by Wolfe and Blanchett [44], the authors concluded
that while there were several sexuality education curricula available, only one was
developed based on the specific needs of the ID population and was comprehensive in
nature. They reported that they found 12 available sexual education curricula that were
recommended by the Sexuality Information Education Center of the United States (SIE-
CUS) for use with adolescents with ID, but only 5 were designed specifically for students
with special needs [44]. The authors went on to explain that those curricula designed for
individuals with special needs were not specific to a given target audience (e.g., students
with ID, deaf students, etc.), but were recommended for a range of individuals. Another
common concern among the curricula for the ID population was that several education
programs were specialized, dealing with singular issues (e.g., sexual abuse, relationships,
and STD prevention) as opposed to fulfilling a comprehensive recommendation.
Wiley and Terlosky [43] stated that all sexual education curricula should be evaluated
for elements of credibility, content, completeness, and sensitivity to the target audience.
Another significant consideration concerning sexual education for individuals with ID is
ecological validity, and the extent to which students form meaningful generalizations from

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Table 2 ID and sexual knowledge

References Study design Subjects Results

Isler et al. Descriptive 60 students ([15 years old) with 51 % received no formal sexual
[18] assessment of mild/moderate ID education; 46.7 % no
sexual knowledge conversations with parents
regarding sexuality; 33 %
reported unwanted touching.
Overall, very low levels of
sexual knowledge
Galea et al. Descriptive 94 adults with mild/moderate ID Subjects were determined to
[12] assessment of possess very low levels of
sexual knowledge sexual knowledge across all
domains but particularly in
domains of safe sex practices,
contraception, STIs, and legal
issues
McGillivray Comparative study 120 subjects: 60 adults 60 % of the ID group reported
[27] assessing sexual (18–59 years old) with having had sexual experiences
knowledge mild/moderate ID and 60 but had very limited
undergraduate students knowledge of STIs, safe sex
practices, and participated in
risky encounters
McCabe Comparative 220 subjects: 60 with The ID group demonstrated
[25] analysis of sexual mild/moderate ID, 60 with significantly lower levels of
knowledge using physical disabilities, and 100 sexual knowledge across all
the SexKen-ID tool from the general population domains measures and 50 %
had no formal sexual
education
Jahoda and Comparative 60 student subjects (16–21 years The ID group was determined to
Pownall analysis of sexual old): 30 with mile ID and 30 possess significantly lower
[19] knowledge non-disabled levels of sexual knowledge,
which was more pronounced
in females
Siebelink Observational study Subjects consisted of 76 Subjects were found to have
et al. [35] utilizing structured individuals ([18 years old) poor sexual knowledge across
interviews with ID all domains. The sexual
knowledge of persons with ID
remains a major concern that
needs to be addressed

the content to practical life settings [44]. Content knowledge is certainly an important
factor but teaching students how to effectively apply the knowledge is a separate challenge
and would require teachers to be well trained.
When formal sexual education is provided specifically to groups of adolescents with ID,
it is often indirect, vague, euphemistic, or overly technical [1, 5, 7, 15]. The result of this
type of sexual education is the lack of a meaningful transfer of applicable knowledge.
Many students with ID exhibit a reduced ability to generalize from experience, which
increases his/her vulnerability to sexual abuse and STDs [7]. The unfortunate fact is that,
frequently, students with ID are excluded from sexual education completely [7]. Another
common strategy is to employ sexual education in a reactive manner—beginning to
educate after students become sexually active [16]. Adopting a reactive approach has been
found to lead to an increased likelihood of misinformation, increased risk of sexual abuse
and STDs, and a variety of socio-behavioral issues [16].

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Table 3 Available curricula

References Study design Subjects Results

Schaafsma Document review with Intervention Mapping to All 5 curricula were

et al. [32] qualitative aspects
Swango- Qualitative study design to
Wilson discover expectations
[39] regarding sexuality
education from individuals
with ID
Dukes and Single subject design
McGuire utilizing tailored ‘‘Living
[11] Your Life’’ sexuality
education curriculum to
assess effectiveness as
evidenced by the SCEA
scale
Lofgren- Qualitative interviews to
Mortenson determine sexuality
[23] education experiences of
individuals with ID
Howard-Barr Mixed methods study
et al. [17] utilizing questionnaires to
ascertain teacher beliefs
about sexuality education
determine effectiveness determined unlikely to be
of 5 sexuality education effective.
curricula for those with Recommendations for
ID systematic, evidenced,
theory-based approach
Subjects consisted of 3 Currently, no sexuality
individuals with DD/CD education curricula,
(23–43 years old) specifically designed for
this population, have been
identified in the US
Subjects consisted of 4 The tailored curricula
individuals with moderate resulted in increased
ID knowledge and decision-
making among subjects.
Any sexuality education
curricula needs to be
tailored to the intended
population
Subjects consisted of 16 Results demonstrated that
young adults many were unsure if they
(16–21 years old) with ID had received any sexuality
education at all, they failed
to grasp the content, and
have the desire to
understand sexual function
and relationships. Formal
knowledge of experiences
of sex education in this
population is almost non-
existent
Subjects consisted of 494 Most respondents expressed
special education teachers the importance of teaching
in Florida sexuality education but
most did not consider their
professional preparation
adequate

Discussion

It is apparent from the review of literature that individuals with ID demonstrate lower
levels of sexual knowledge and are less informed about sexuality than their peers, but there
is very limited research describing sexuality education among those with ID [22, 30, 33],
and even less delineating how to effectively individualize and adapt existing, mainstream
curricula [14, 22, 40]. Although several potentially appropriate and effective sexual edu-
cation curricula exist, these programs do not appear to have been empirically evaluated,
and further research evaluating the efficacy of these programs for helping students with ID
deal with the maturational challenges of adolescence and beyond is necessary [36].
The literature is clear that there are major challenges in educating those with ID with
regard to sexuality. There are some curricula that have been implemented in inclusive
classrooms with minimal discernible results. The challenge remains to identify which

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curriculum to choose, how to adapt it to the ID population, and how to most effectively
deliver its’ contents to students with ID. Based on their research, Galea et al. [12] con-
cluded that sexuality education programs should be specifically tailored to address indi-
vidual characteristics of the students. In order to acquire effective sexual education
programs for those with ID, it would be critical to conduct a formal needs assessment to
ascertain a clear idea of the impact on this population [32]. Including members of the target
group and implementers throughout the process to determine which parts of the program
are effective and which parts are not, would be prudent. According to Rossi and Freeman
[31], an adequate evaluation plan is necessary and must have measurable outcomes.
Furthermore, it would be advisable to have an independent evaluation of such programs
conducted by professionals working in the field to determine effectiveness [9].
An effective sexual education program for those with ID must certainly cover topics
such as body parts, as well as physical and psychological changes, which occur through the
adolescent period [46]. According to Walker-Hirsch [41], appropriate sexual education for
individuals with ID should also address such aspects of sexuality as social skills, repro-
duction, prevention of sexual abuse, STD education, personal safety skills, and sexual
orientation.
As a result of most individuals with ID having low levels of correct information about
sex, these students should not rely solely on the information of formalized sexual edu-
cations programs in the school but also on their families and health care professionals [18].
Dukes and McGuire [11] stressed the necessity of individualized, one-on-one educational
intervention where care is taken to match the educational approach to the learning style,
skills, and abilities of the individual learner. The challenge remains how to apply this type
of intervention in a classroom environment. Many of the existing sexual education cur-
ricula used in the public schools have demonstrated general effectiveness but fail to
address the specific needs of those with ID. Wolfe and Blanchett [45] stated that because of
the often abstract nature of sexual education, role-play can be effective in helping students
develop dating skills and better understand sexuality related concepts. Much of the didactic
nature of typical sexual education may prove ineffective for individuals with ID because of
the potential difficulty in comprehending the information, responding to, and formulating
questions relating to topic areas [13]. Wolfe and Blanchett [45] went on to point out that
sexual education curricula should contain a variety of instructional media (e.g., books,
videos, and models), various instructional strategies (e.g., lecture, role-play, and demon-
stration), and provide a means of evaluating student progress (e.g., tests, surveys, and
concept identification).

Conclusion

Although individuals with ID are a heterogeneous group (e.g., degree of disability, familial
influence, age, gender), it is apparent that, in light of these important differences, popu-
lation specific sexual education needs to be considered a priority. One is confronted with
the difficulty in preparing curricula for the ID group as a whole when individuality needs to
be considered, but these challenges are also present in the mainstream population whenever
curricula are needed or changed. Clearly, significant challenges exist in educating indi-
viduals with ID regarding sexuality. It is an issue that needs to be explored in more depth
with a focus on effective educational methods, specifically in the ID population, aimed at
minimizing the negative consequences associated with a lack of knowledge and

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understanding. The ramifications of those with ID not being afforded empirically evaluated
and effective sexual education appear to be significant and damaging, potentially resulting
in life-long impacts on the individual and his/her family. As these young people mature
and strive to transition into active participants in adulthood, sexual knowledge will become
even more imperative. If one is not presented with appropriate sexuality facts in an
understandable fashion, the consequences may continue to accrue. This paper is intended
to establish the need for a population specific and empirically validated curricula that
would serve as a means to increase sexual knowledge among individuals with ID.
Increased research is warranted to further document the results of inappropriate sexual
education as well as to determine appropriately normed and empirically based curricula,
which may lead to a meaningful and results-oriented approach. Empirically developed,
population specific sexual education content for individuals with intellectual disabilities is
recommended.

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