An Investigation Into Parental Attitudes About Sexuality and Children With Intellectual Disabilities

Running head: Parental Attitudes about Sexuality and Intellectual Disabilities
AN INVESTIGATION INTO PARENTAL ATTITUDES ABOUT SEXUALITY AND
CHILDREN WITH INTELLECTUAL DISABILITIES
By
Aaron Haynes
A Paper
In Partial Fulfillment of the Requirements
For the Degree of Master of Education in School Counselling
March, 2016
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Parental Attitudes about Sexuality and Intellectual Disabilities
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Acknowledgements:
This Capstone is the culmination of my formal post-graduate education. This effort calls
on my experience from my Teacher Education, Special Education training and my Counselling
Master’s program. I genuinely feel that I am combining my areas of expertise and creating a
useful document for myself and others.
I look forward to reflecting on this project in about a year and see if I have actually used
anything in my practice. If I do not implement any of the practical recommendations I will be
curious about why. Creating a document like this takes a lot of effort and time. However, once
finished I know that this project will enrich my life significantly.
Thank you to all my instructors. Your expertise and experience was invaluable.
Thank you to my fellow students. Your enthusiasm and passion kept me wanting to come
back.
Thank you to my wife. Your encouragement made the dark times a little brighter.
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ABSTRACT
People with intellectual disabilities (id) living in Canada traditionally experience unique
challenges and roadblocks as they seek to explore their sexuality. Often, they have a difficult
time forming and maintaining romantic relationships because of lack of opportunity or
education. This paper investigates the following question: What are the attitudes and beliefs of
parents of children with intellectual disabilities that have a negative influence on the capacity of
their children to explore and develop sexual identities? In law and in society, it is generally
accepted that people with intellectual disabilities deserve the same rights and freedoms as any
other person. It is also clear that people with intellectual disabilities have sexual and romantic
thoughts and feelings. However, marriage and child bearing for people with id is infrequent and
unusual. Parental attitudes are one factor that determines the opportunities and experiences of
people with id. It is these initial understandings that help me in the development of this study.
First, I will be investigating the problem of attitudes through a study of current peer reviewed
literature. Then, I will develop a qualitative research study designed to identify and classify
attitudes of parents about the sexuality of their children with intellectual disabilities. In this
paper, I will present and explain the following conclusions. Parents want their children to have
meaningful relationships with others, but they fear the possibility of abuse towards their children.
Furthermore, parents are concerned about the ability and appropriateness of their children having
children. At the same time, parents also feel unprepared to offer sexual health guidance to their
children with intellectual disabilities. These potentially harmful attitudes are based on fear and
ignorance. The problem is exacerbated by feelings of isolation and overwhelming stress. As a
result of these findings and their negative implications, I recommend continued tracking of
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parental attitudes in order to develop appropriate interventions and supports for parents and
children. In addition, the tracking will help educational professionals to observe any general
changes of attitude over time.
Key words: Sexuality, Intellectual Disability, Education
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Table of Contents
Title Page 1
Signature Page 2
Acknowledgements 3
Abstract 4
Table of Contents 6
Chapter 1: The Problem 7
Chapter 2: Review of Literature 14
Chapter 3: Suggested Research 36
Chapter 4: Summary, Conclusion and Recommendations 44
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Chapter 1
Introduction.
People with intellectual disabilities (id) have experienced great gains in freedom and
support over the last several decades. Canada, as a nation, has moved from the practice of
institutionalization to societal integration. The legal rights of people with intellectual disabilities
have become more and more entrenched. For example, people with id are finding meaningful
employment and have more opportunities for supported housing that more resembles family
living rather than prison. The Canadian Education system has developed programs and supports
for people with id. However, sexual rights and freedoms for all, have remained very
controversial.
In this Chapter, I will present an outline of my efforts to become more familiar with the
issue of parental attitudes about sexuality and children with intellectual disabilities. I will
demonstrate the importance of this topic to educational professionals. Finally, I will propose one
way that I can personally contribute to the field of scholarship through a qualitative study. This
chapter will establish a tone of professional curiosity, empathy and passion.
Statement of the Problem
Sexual freedom for people with intellectual disabilities is a confusing and controversial
topic. Canadian society continues to struggle with ways to help people with Intellectual
Disabilities develop and express sexual identity in healthy and appropriate ways. The issue of
sexual freedom and expression, including relationships and reproductive rights, has been a
challenging arena for people living with and supporting people with intellectual disabilities.
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Children with intellectual disabilities experience unique and significant challenges in their
attempt to engage in meaningful and satisfactory sexual exploration.
Parents experience fear and doubt about the ability of their children to make safe choices
regarding romantic partners, to manage sexual urges or desires and make appropriate decisions
about reproductive management. Furthermore, parents of children with id generally feel
unprepared to provide appropriate sexual health education.
Parental attitudes and styles of communication about sex has an influence on the children
they raise. Parents play a major role in guiding their children towards sexual maturity. Parents
may have attitudes about sexuality that limit full sexual freedoms of their children with id.
Purpose of the Study
As an educational professional, my primary goal in this project is to provide practical and
useful information to other educational professionals who support students with intellectual
disabilities. Educational Assistants give intimate and personalized emotional and academic
support. Special Education teachers develop curriculum and provide meaningful learning
opportunities. Counselors help children with id understand and negotiate the complex social
challenges they face in high school. I intend to make this document relevant to these people.
High school is a social environment in which young people with id face difficult and
confusing choices. Professionals, either formally or informally, inevitably provide some sexual
education to children with id. All stakeholders want to provide the best quality instruction and
support possible. Best practice requires that professionals gather up-to-date and relevant
information in order to make the best decisions. Part of this process includes communicating
with the appropriate stake holders regarding any educational issue.
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Parents are always important stake holders in the educational system. More than most
teachers, Special Education teachers work very closely with parents. One reason for this is that
children with id need individualized educational planning. For these students, parents have
unique insights and understandings about the needs of their children.
I hope that the educational professionals who read this study will be better informed
about the typical fears and concerns parents have about the sexual development of their children
with id. In Chapter 2, I will provide a Literature review exploring the potentially harmful
attitudes parents have about the sexual development and rights of their children with id. In
Chapter 3, I will propose a specific qualitative study seeking information from parents of
children with id living in Surrey, B.C. and attending a Surrey public school. Using this
information, I hope that professionals will be able to develop the most appropriate sexual health
education possible.
Statement of Evaluation Questions
This study seeks to answer one central question: What are the attitudes and beliefs of
parents of children with intellectual disabilities that have a negative influence on the capacity of
their children to explore and develop sexual identities? This question can be dissected into
several more specific questions. First, what are some problematic parental attitudes about the
ability of their children to form and maintain relationships safely and avoid exploitation/abuse?
Second, what are some problematic parental attitudes about the ability of their children to
manage Family Planning issues? Third, what are some problematic parental attitudes about the
ability of their children to understand and follow sexual norms of behavior? Fourth, what are
some problematic parental attitudes and perceptions of their children’s Sexual Identity? Finally,
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what are some problematic parental attitudes about their own ability and obligation to be a sexual
educator?
Importance of the Study
I have worked as a Special Education teacher for over 15 years. Virtually every year,
one or more students I work with have discipline problems due to inappropriate social-sexual
behavior. I have seen many boys get in trouble for bothering girls at lunch. These boys are
attracted to some girls and invade their personal space and make socially inappropriate
declarations of feeling. These boys don’t mean harm, but they do not know how to deal with
their emotions. I have known several teenage girls with id become pregnant from non-disabled
boys who have no desire to have a real relationship with them. Inevitably, the Special Education
department is approached by administration to provide some sexual health education with the
hope of avoiding these unfortunate incidents.
Considering how important sexual health education is for people with id, it may be
surprising to know that in my years as a teacher, I have almost never had a conversation about
sexual health with a parent of one of my students. Transitional planning for adulthood is almost
always focused on employment and IEP meetings are usually about course selection and ways to
support students academically. I don’t know if parents are uncomfortable discussing these issues
or they think that schools have no role in this arena of their child’s life. I have to admit to feeling
uncomfortable raising the issue of sexual health with parents because I do not wish to cause
discomfort for parents and I don’t wish to take on the huge task of offering sexual health
education without having the appropriate training and supports.
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I believe that the best sexual health education programs are programs developed and
delivered by parents and professionals together in a coordinated manner. Therefore, clear
communication between parent and professional is crucial. This study is designed to provide
information to professionals about parental attitudes. Hopefully, this information will facilitate
meaningful communication between parents and professionals.
Furthermore, sexual health is a right for all individuals. When sexual identity and
expression is denied to individuals with id and sexual health education and support is inadequate,
a great harm is done. People with id have reduced quality of life with feelings of loneliness and
isolation or they engage in inappropriate and potentially harmful sexual behaviors or they are
more susceptible to sexual predators. It is my goal that this study be one contribution to open
and productive discussions of sexuality. The benefits will be significant.
Scope of the Study:
One of the greatest challenges of this project is to narrow the topic down to a manageable
size. Starting from a general interest in the sexual rights and freedoms of young people with id, I
need to develop a focus. The first thing I will do is focus on attitudes towards sexuality and
people with id. I will then chose to further focus on the attitudes of one segment of society. The
three most interesting segments of the population to me are family caregivers, professional
caregivers and people with intellectual disabilities. I have decided to focus on parents, because it
is the group I am least familiar with. I hope to incorporate this information into my teaching
practice in order to improve my craft.
From this point, I have chosen to focus on potentially harmful parental attitudes.
Gathering data about these types of attitudes is useful for professionals wanting to offer sexual
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health education support to people with id. After this reflection, I was able to form a meaningful
and significant question for investigation: What are the attitudes and beliefs of parents of
children with intellectual disabilities that have a negative influence on the capacity of their
children to explore and develop sexual identities?
Please be aware that this study does not try to quantify the prevalence of harmful
attitudes, it simply tries to identify the most apparent harmful attitudes. I do not say what
percentage of parents feel a certain way about things like sterilization, mainly because it is not
possible to quantify such attitudes based on a survey of current Literature.
Also, please note that my focus is on attitudes of parents from North America. However,
I fully acknowledge that attitudes most likely differ from region to region. This is the main
reason why in Chapter 3 I propose a localized research study which will be most directly useful
to professionals in Surrey and the greater Vancouver area and will have implications for others
as well.
Summary
The problem that I have identified is that people with intellectual disabilities experience
unique and significant barriers to sexual development and sexual expression. I will seek to
determine the attitudes and beliefs that parents may have about sexual identity, expression and
education that might be harmful to their children with id. I wish to provide information to
professionals in order to facilitate meaningful communication between parents and professionals
who support children with intellectual disabilities. This study is one contribution towards the
recognition of rights and a recognition of the support needs of people with id in order to live
meaningful and satisfying lives.
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Outline of the Remainder of the Paper
In Chapter 2, I will delve deeply into the existing Literature about parental attitudes about
the sexuality of children with id. This will be an academic exploration of peer reviewed studies.
I will organize the Literature review based on specific themes of inquiry that can be found in my
Statement of Evaluation Questions section.
In Chapter 3, I will propose and develop a qualitative study of attitudes about sexuality of
parents with children with intellectual disabilities. This activity will be a phenomenological
study that seeks to identify themes of concern as presented by parents in one-to-one interviews.
The structure of this study will emerge from the deficits of the information gathered in Chapter
2.
In Chapter 4, I will summarize and synthesize my findings from Chapter 2 and 3. I will
explain the significance of this Capstone activity and I will make several recommendations for
educational professionals who support young people with intellectual disabilities.
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Chapter 2
Introduction
In Chapter 2, I will review the relevant peer reviewed literature regarding parental
attitudes about sexuality and their children with intellectual disabilities. The specific question I
seek to explore is, “What are the attitudes and beliefs of parents of children with intellectual
disabilities that have a negative influence on the capacity of their children to explore and develop
sexual identities?” This will lead to a proposal to interview parents of children between the ages
of 13-18 with mild intellectual disabilities who attend a public school in Surrey, BC. (Chapter 3).
Based on my exploration of peer reviewed literature, I have been able to organize much
of the information and data into the following thematic topics. First, I will explore parental
attitudes about the ability of their children with id to form and maintain safe relationships and
avoid abuse or exploitation. I am interested in exploring the following questions. Do parents
think their children are able to form and maintain long term romantic relationships? For
example, do parents support the idea of marriage for their children? Do parents feel that their
children are at greater risk for sexual exploitation and abuse than the general population?
Second, I will explore parental attitudes about the ability of their children to manage Family
Planning issues. Do parents think their children should have the right to have and raise children?
Do parents support forced or coerced sterilization for their male or female children? Third, I will
explore parental attitudes about the ability of their children to understand and follow sexual
norms of behavior. Do parents believe their children are able to distinguish between private and
public behaviors? Do children believe their children can control sexual impulses? Do parents
believe their children are capable of learning and personalizing basic facts related to sexuality?
Fourth, I will explore parental attitudes and perceptions of their children’s sexual identity. Do
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parents see their children as asexual? Are parents open to homosexual/bisexual behaviors in
their children? Finally, I will explore parental attitudes about their own ability and obligation to
be a sexual educator for their children? Do parents feel able to provide adequate sexual
education to their children? Do parents feel that sex education is useful for their children? Do
parents support the right to sexual education?
To conclude the literature review, I will briefly address the issue of parental attitudes
from various other countries around the world. An exploration into the international arena will
give insight into the cultural origins of these attitudes towards sexuality. Considering the
multicultural nature of Canada and the high level of immigrants in Canada, understanding the
origins of these attitudes may be very helpful to researchers and educational professionals who
wish to develop meaningful interventions and support systems in place.
Definition of Terms
To ensure clarity of understanding, I will provide to the reader context and definition for
several key and important concepts.
Terms and Concepts:
a. Attitudes: For the purpose of this Capstone project, the definition of attitude will be
relatively broad. Also, as this project is not really about finding a scholarly definition of
attitude, a broad and general definition seems appropriate. Therefore, I will use the term,
“attitude” to mean the mental process of evaluating and judging a person, event or idea. In
this case, how do parents of children with id evaluate and judge their children’s abilities
tendencies, and rights? Also, how do parents evaluate their own ability and obligation to be
sexual educators? Attitudes may be pre-cognitive or the result of extensive observation and
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exploration. Attitudes must influence one’s behavior. As a result, the study of parental
attitudes is important because it may help us understand the actions of parents.
b. Intellectual Disability: For brevity I will frequently refer to intellectual disabilities as “id”.
An intellectual disability refers to a deficiency in the mental or intellectual capacity of an
individual as based on current psychological procedures and tests. Specifically, the
characteristic of an intellectual disability is an IQ less than 70. Intellectual disabilities also
require a significant impairment in adaptive functioning. This means a person with an id
will have difficulty in functioning in several domains including conceptual skills, social
skills and practical, daily living skills. Intellectual disabilities can be mild, moderate or
severe in nature. This study does not distinguish parental attitudes based on the severity of
intellectual disability, mostly because there is a dearth of literature that identifies the
severity of disability as a relevant factor. However, it seems likely that there would be
significant differences in attitude based on the severity of disability. Nevertheless, the
literature under review generally describes people with id as mostly having a mild to
moderate intellectual disability, but does not actually specify differences within the realm of
intellectual disability. Parental attitudes of children with severe intellectual disabilities are
not specifically included in this literature review. This has been a challenge for me in this
project which I will explore in more depth later.
c. Parent/ Family Caregiver: The parents under study in this project are primary caregivers of
children with intellectual disabilities. Parents do not have to be biologically connected to
the individual child with id. Unless otherwise specified, when I refer to parents, this can
mean any combination of caregivers. For example, parents might be biological mother and
father, or single mother or single father, etc.
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d. Sexual rights: A right is a moral or legal entitlement to obtain something or to act in a
certain way. Sexual rights refer to one’s moral and legal status in regards to sexual
expression and identity. If people with id have different or less rights than others, it would
be seen in legal documents like the Canadian Charter of Rights. In addition, sexual rights
may also be found in documents like The Universal Declaration of Human Rights by the
United Nations. Although legal status is an evolving thing, the general principles of non-
discrimination and equal rights for all provides us with a baseline for understanding legal
rights.
e. Sexual Development/ Growth: Theories of development abound from Freud to Piaget to
Vygotsky. For the purposes of this project, I will not delineate between the various theories.
The real issue is how much is known about the growth from sexual immaturity to sexual
maturity in terms of behavior and identity. The question some may have is, “Is it possible
for people with id to develop into sexual maturity?” If it is possible, how might it be similar
or different from the general population? If sexual maturation is different, to what extent
does it justify limiting freedom of people with id? These are questions that society and
parents specifically have to wrestle with.
f. Sexual Education: Sexual Education may be formal or informal. The ideal purpose of
Sexual Education is to prepare individuals to understand sexual impulses and make safe and
healthy choices about sexual expression. The providers of sexual health education of
children has changed and evolved. However, typical providers of sexual information in the
past has been parents, school staff, peers, the media or religious instructors. The quality of
sexual health education has varied widely. Without dismissing the importance of other
sources of sexual health education, it is clear that parents can have a very influential role in
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educating their children. Therefore, it is valuable to know about parental attitudes about
their own role in this process of sexual preparation.
g. Family Planning: Family planning refers to the ability of a person to make rational and
purposeful choices about marriage, having and raising children or the use of birth control.
All people, whether they are intellectually disabled or not, have variable skill sets when it
comes to Family Planning. Family planning is not always fully intentional. However, as
will be shown, parents often fear the decision making ability of their children with id. Does
this attitude reveal a bias against people with id or is it reasonable to think that people with
id are not able to live with the consequences of their choices and people or average
intelligence are able?
Historical Background:
The historical evolution of rights and freedoms for people with intellectual disabilities in
Canada has been slow but significant. Overall, the directional movement has been towards
greater freedom, higher inclusion and more support for people with id. However, families with
children with id continue to carry the highest burden of care. Nevertheless, governments have
slowly provided some financial support for families struggling with the unique challenges of
raising children with id. The arena of sexual freedom for people with id has its own special
controversies. Specifically, sexuality often is a taboo topic and people feel uncomfortable
discussing sexuality.
The issue of sexual freedom for people with id has been affected by ignorance and
prejudice as well as paternalism and fear. Common misconceptions about people with id is that
they are asexual in nature. In other words, children do not develop sexual feelings or experience
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sexual urges. On the other hand, a common myth is that people with id are prone to sexual
deviance and are unsafe in society because they are over sexed and unable to control these urges.
The reality is that both of these perceptions are false or at least misguided.
These perceptions have led to irrational fear in society. These misconceptions have led
many in society to suggest many harmful policies that limit the sexual rights and expressions of
people with id. Some of the significant limitations imposed have been forced or coerced
sterilization. Of course, fear of sexual deviance has supported the movement towards greater
control and institutionalization. Furthermore, these misconceptions essentially support a system
of paternalism towards people with id. At best, this means a system of care that unnecessarily
limits the rights and freedoms of people with id with the perception that these limitations are for
their own good. At worst, this means a system of carelessness that cruelly disposes of a
perceived nuisance in institutions or other highly restrictive environments.
Purpose and Source of Literature Review
The problem I have identified is that people with intellectual disabilities do not, generally
speaking, enjoy the same level of freedom to explore sexual identity and preferences as the
general population. Furthermore, I hypothesize that parents of children with id may hold
attitudes that limit the sexual freedom and expression of their children. The question being
explored in this literature review is, “what are the attitudes and beliefs of parents of children with
intellectual disabilities that have a negative influence on the capacity of their children to explore
and develop sexual identities?” As extensively as possible, I intend to acquaint the reader with
the most relevant and up to date peer reviewed literature that either directly or indirectly explores
the question identified. I will share my knowledge of the research related to this question.
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Finally, I will provide recommendations about further research that may be done to increase
understandings related to the question and problem.
Literature Review:
As stated in the introduction to Chapter 2, the Literature review is structured and
organized into several thematic topics. Under each thematic topic, I give a general overview of
the topic and then share the information from the Literature.
Parental Attitudes: Forming and Maintaining Safe, Non-Abusive Relationships
In this section, I will explore parental attitudes about the ability of their children with id
to form and maintain safe relationships and avoid abuse or exploitation. Do parents think their
children are able to form and maintain long term romantic relationships? For example, do
parents support the idea of marriage for their children? Do parents feel that their children are at
greater risk for sexual exploitation and abuse than the general population?
It is easy to understand why a parent may feel that their children are at great risk for
being exploited or abused within romantic relationships. Their children are often placed in
vulnerable positions with professional support staff as well as the general population. It would
be natural for a parent to wonder if their child is able to safely choose a mate or romantic partner.
Parents who believe that their child with id is at great risk of being a victim of sexual
abuse have some evidence to support their fears. Horner-Johnson and Drum (2006) reviewed
studies published from 1996-2005 to determine the rate of maltreatment of individuals with
intellectual disabilities. Maltreatment is a broad term that includes, but is not limited to, sexual
abuse. The results of the study found that there is very little literature on this subject but the
available literature, “suggest(s) that maltreatment is more prevalent for people with id than for
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people with no disabilities and may be higher for people with ID than for people with certain
other disabilities.” (Horner-Johnson, 2006, p. 57) This not very specific, but does raise concerns
and suggests further research in this area is needed.
Even if the evidence for high risk of sexual abuse is unfounded, the literature clearly
shows that many parents have strong fears of sexual abuse for their children. Michelle Ballan
summarizes this issue very clearly. “Some parents… fear that their children will be unable to
express their sexual impulses appropriately, will produce children… and will be targets of sexual
abuse or exploitation.” (Ballan, 2001 p. 14) This fear, “often results in overprotection” and
parents, “may suppress their children’s sexuality.” (Ballan, 2001, p. 14)
Other studies exist that explore parental fear of sexual abuse of their children with id.
Pownall, Jahoda and Hastings conducted an extensive study that compared attitudes and
behaviors of mothers with children with id to mothers with children without id. The authors
developed questionnaires and interview questions about sexuality and sexual education. There
were 30 mothers with children with id and 30 mothers with children without id. This study will
come up in several other sections of this literature review as well. The overall finding was that
mothers of children with id held more cautious attitudes in general. Specifically, mothers with
children with id expressed greater concern about sexual vulnerability. (Pownall, Jahoda, &
Hastings, 2012, p. 140)
Although parents are aware that children with id have the right to have sexual
experiences, it is this conservativeness and fear of sexual exploitation that causes some parents to
be highly restrictive of their children’s sexual experiences (Pownall et al., 2012, p. 141).
According to another article about Mother’s experiences, Ankeny, Wilkins and Spain found that,
“In particular, mothers struggled to accept the desires of their daughters to date and marry and
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grappled with internal conflicts over wanting their daughters to live like other young adults.”
(2009, p. 32)
Overall, the Literature seems to support the idea that many parents experience significant
fear for their children’s safety when it comes to forming relationships. In particular, parents fear
the potential for abuse. As a result, parents may exert significant restrictions on their children’s
freedoms. Obviously, these safety restrictions would inevitably lead to reduced opportunities for
people with id to meet potential mates and develop relationships that could lead to marriage.
After all, a certain amount of privacy is crucial for the development of healthy romantic
relationships.
Parental Attitudes: The ability of children to Manage Family Planning
In this section, I will explore parental attitudes about the ability of their children to
manage Family Planning issues. Do parents think their children should have the right to have
and raise children? Do parents support forced or coerced sterilization for their male or female
children?
The issue of forced sterilization is a very controversial subject with a disturbing history.
Sterilization brings up thoughts of eugenics and the horrors of Nazi Germany. However,
sterilization is still an issue that parents have to wrestle with in raising their children with id.
Aunos and Feldman studied existing literature on the issue of attitudes about sterilization and
parenting rights of persons with intellectual disabilities (2002). The literature goes back from the
1970’s to the time of publication. Although not specifically about parental attitudes, this
research gives some useful information about parental attitudes. This study is also useful
because it is Canadian. Aunos found that up to 80 % of service workers and parents were in
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favor of sterilization (2002, p. 288). Unfortunately, this research goes back to the 1970’s and is
so outdated as to have little or no relevance to now. My search for relevant and up to date
literature left me essentially empty handed. This may be because the issue of sterilization is so
outdated as to be irrelevant. On the other hand, this lack of available literature on sterilization
also points to a need for further research.
Conod and Sevais came to an interesting conclusion about sterilization. “Indeed, because
of suspected poor medical compliance and/or vulnerability to sexual assault, persons with
intellectual disabilities are often considered candidates for surgical sterilization. Parents and
caregivers have expressed a strong preference for these methods, and there is a high satisfaction
rate when they are performed.” (Conod & Servais, 2008, p. 230) However, the data supporting
this conclusion also seems to be very old coming from studies from the 1970’s or 1980’s.
There are family planning issues separate from sterilization that are relevant to this
project. For example do parents support the right of people with id to raise and have children?
The literature suggests that parents, as well as other professional caregivers are worried about
and wish to avoid pregnancy (Aunos, 2002). There are at least two possible reasons for this.
First, parents may think that their children would be incapable or raising children and, second,
parents may fear that the parents may genetically pass on the intellectual disability.
Brown and Pirtle published a study about beliefs of professional and family caregivers
about the sexuality of individuals with intellectual disabilities (2008). Again, although this study
was not exclusively about parental attitudes, this study provides rich information about parental
attitudes. In this study, Brown and Pirtle were able to identify 4 belief systems that professional
and family caregivers have. The four systems are advocates (strong supporters of human rights
for the individual with intellectual disabilities), supporters (ardent supporter of sex education for
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the individual with intellectual disabilities), regulators (supporter of extensive birth control
measures), and humanists (the strongest supporters of human rights for the individual with
intellectual disabilities) (59).
I will refer to this study in other parts of this project, but here I will summarize how
members of each belief system feel about family planning issues. Participants were given
statements and asked to rate the level to which they agree or disagree. The range of responses
were from -4 to +4. Advocates agree (+3 or higher) with statements like the following: It is
unfair to prevent individuals with intellectual disabilities from having children (Brown & Pirtle,
2008, p. 67). Advocates disagree (-3 or lower) with statements like: The individual with
intellectual disabilities should be taught about sex and then sterilized to prevent pregnancy
(2008, p. 67). Supporters agree with the following statement: Birth control methods should be
stressed in sex education for individuals with intellectual disabilities (2008, p. 68). Supporters
disagree with statements like: Sterilization should be used because it alleviates problems for the
individual with intellectual disabilities and their parents (2008, p. 68). Regulators agree with
statements like: Birth control methods should be stressed in sex education for individuals with
intellectual disabilities (2008, p. 69). Regulators disagree with the statement: Discussion of
AIDS and other sexually transmitted diseases will only serve to scare individuals with
intellectual disabilities (2008, p. 69). Humanists agree with the statement: Birth control
methods should be stressed in sex education for individuals with intellectual disabilities (2008, p.
70). Humanists disagree with the statement: As a tax-paying citizen I believe individuals with
intellectual disabilities should be sterilized to prevent them from having children (2008, p. 70).
The fact that all systems of belief demonstrate attitudes of strong and meaningful support
for people with id and family planning is encouraging. It suggests that parents, who must fall
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into one of those systems of belief, actually oppose sterilization and support other forms of birth
control through sexual education. Those people in the advocate category actually support the
notion that people with id should not be prevented from having children against their own will.
These findings challenge my hypothesis that parents hold negative attitudes about family
planning for those with id.
Parental Attitudes: The ability of children to understand and follow Sexual Norms
I will explore parental attitudes about the ability of their children to understand and
follow sexual norms of behavior. Do parents believe their children are able to distinguish
between private and public behaviors? Do children believe their children can control sexual
impulses? Do parents believe their children are capable of learning and personalizing basic facts
related to sexuality?
If parents feel that their child is unable to distinguish between private and public
behaviors, it might cause parents to suppress sexual expression and knowledge, in order to
mitigate the possibility of private actions in public spaces. If parents feel that their child is
unable to fully control sexual urges, they may choose to limit normal socialization opportunities
for their children.
The literature does give some insight into parental attitudes about these issues. To begin,
one study from 2012 about parental perspectives of communication about sexuality in families of
children with autism spectrum disorders, Michelle Ballan found that many parents feared that
non-sexual behaviors would be misperceived as being sexual in nature by the public (M. S.
Ballan, 2012, p. 679). In other words, children may not be aware of norms regarding personal
space. This is an interesting observation, because it shows that non-sexual behaviors can still
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have an impact on the sexual life of children with disabilities. Unfortunately, this study was
strictly about children with autism and not necessarily intellectual disabilities. However, the co-
morbidity of id with autism is relatively high between 25-70 % (Dawson, Mottron &
Gernsbacher, 2008). We can safely assume that some of the children with autism in this study
also had intellectual disabilities.
In a 2001 paper about parents as sexuality educators, Michelle Ballan claims that, “Some
parents of children with developmental disabilities also fear that their children will be unable to
express their sexual impulses appropriately. To alleviate fears and anxiety, parents may suppress
their children’s sexuality.” (M. Ballan, 2001, p. 14) Although this is an important statement,
Ballan does not quantify what “some parents” means. This quantification may be helpful in
determining systemic interventions. Perhaps more specifically and emphatically, Ballan also
states that there is, “no empirical data to support the belief that sexuality education will result in
experimentation…” (2001, p. 15) This contradicts the attitude that some parents have about the
dangers of giving people with id sexual information.
In another study about caregiver perceptions of sexual behavior the author found that,
among other things, public displays of affect by people with id were perceived as being
potentially inappropriate (Swango-Wilson, 2008, p. 80). This finding is important because it
reveals that some caregivers perceive the same action from a person with id and a person without
id as significantly different in appropriateness. The issue of social norms is turned on its head.
Caregivers do not expect people with id to behave within social norms, and when they do, it
causes discomfort in the caregiver.
Pownall’s 2012 study about mother’s attitudes found that parents of children with id are
more likely to believe that discussing sex would encourage sexual behavior or promote
26
inappropriate behavior (p. 141). This perception goes to a core belief that giving knowledge to
people with id would lead to bad results. This reveals a fundamental bias that people with id are
not capable of making wise choices about private actions in public spaces.
Brown and Pirtle’s study, who identified the 4 belief systems of advocates, supporter,
regulator and humanist, present’s a different perspective. All four groups strongly support a
statement like: “Moral considerations about sexual behavior should be discussed with the
individual with intellectual disabilities.” (2008, p. 67) Another supported statement is:
“Everyone who can understand sex education should be instructed” (p. 67) These statements are
more positive and indicate that people with id can be taught to follow sexual norms.
From Ireland, D.S. Evans conducted a study comparing attitudes of staff and family
caregivers about sexuality and relationships for people with intellectual disability. The general
finding was that family care givers are less likely to discuss sexual issues with their children than
paid staff (Evans, McGuire, Healy, & Carley, 2009, p. 913). In this study, participants were
asked to share their thoughts about 3 scenarios. One scenario involved two individuals with id
who engage in intimate acts in a public park. Family caregivers were less likely to support open
discussion of the issue with the individuals involved and, furthermore, “Family carers were more
likely to be critical of factors that allowed the scenario to occur, and suggested preventative,
rather than educational interventions to ensure that the event does not recur.” (Evans et al., 2009,
p. 918-919) This response to inappropriate public displays of affection reveal a strong
discomfort with the autonomy of individuals with id and a preference for the controlling of
individuals with id.
Parental Attitudes: Sexual Identity
27
In this section, I will explore parental attitudes and perceptions of their children’s sexual
identity. Do parents see their children as asexual? Are parents open to homosexual/bisexual
behaviors in their children?
Sexual identity relates to how one thinks about themselves in terms of gender identity,
sexual orientation and romantic orientation. Sexual identity is the result of self-reflection and
can be an extremely complex and nuanced construction. Therefore, it is reasonable to wonder if
intellectual disability is an impediment to the process of constructing sexual identity. However,
sexual identity does not have to be painstakingly constructed. Rather, sexual identity may be
more intuitive, something someone just senses within themselves. In this way, we can see that
intellectual impairment need not preclude the possibility of sexual identity.
Admittedly, the reason why I chose this theme is based more on speculation rather than
hard evidence of parental attitudes negating sexual identity of their child with id. Although there
is literature about the difficulties of people with id struggling with sexual identity and
orientation, I could find no specific study about how parents reject their child’s exploration of
sexual identity and orientation. Therefore, this section must remain sparse. The greatest
evidence of parental attitudes of sexual orientation is not from North America, but rather from
Northern Europe including the United Kingdom as well as a contribution from Australia. We are
left to speculate about the connection to Canada in general.
From the UK, Abbott and Burns, conducted a study about staff views on supporting gay,
lesbian and bisexual people with intellectual disabilities in 2007. In this qualitative study there
are some glimpses about parental opinions about sexual orientation. Based on interviews with 9
women and 11 men with id identifying as lesbian, gay or bisexual, individuals with id are very
reluctant to come out to their families (Abbott & Howarth, 2007). When they do come out, the
28
result is not as supportive as hoped. One woman who told her mother she is gay was greeted
with, “You’re gay? You don’t know what it is to be gay. You don’t understand. You’re not gay,
you don’t know what you are talking about, you’re just going through a phase.” (Abbott &
Howarth, 2007, p. 32) This quote shows that this mother does not believe her daughter is
capable of even understanding homosexuality. Jim, a gay man, got an even more disturbing
response from his father, “It’s sick… It’s sick that men want to…” (Abbott & Howarth, 2007 p.
32) This parental response may not be significantly different from what non-intellectually
disabled individuals would receive, but it shows that people with id certainly have trouble with
parental attitudes against non-traditional sexual orientations.
From Australia, I found a 2011 article by Noonan and Gomez which is constructed to
present the complexity of issues which prevent LGBT people with intellectual disability from
living full lives and having opportunities for sexual expression. The authors point out a general
attitude and belief that if people with intellectual disabilities have sexual identity, they are
heterosexual. (Noonan & Gomez, 2011 p. 176) The authors further state that people with
intellectual disabilities often grow up in restrictive environments whether it be supported
accommodations or with families. (Noonan & Gomez, 2011 p. 176) The obvious implication is
that people with id will face negative responses to expressing non-traditional sexual orientations.
From Sweden comes a qualitative study with the purpose of identifying, describing and
understanding the opportunities and hindrances for young people with intellectual disabilities in
expressing a variety of sexual expressions, such as homosexuality and bisexuality (Löfgren-
Mårtenson, 2009). Through interviews, the author sought to find out the attitudes of parents and
staff members concerning homosexuality and bisexuality and young people with id. The result
was that, “not a single parent reported that their son or daughter was homosexual or had ever
29
expressed a desire for same-sex activity (Löfgren-Mårtenson, 2009 p. 23). Only 11 parents were
interviewed, so the results are certainly limited. However, this result emphasizes the invisibility
of people with id having non-traditional sexual orientations.
Parental Attitudes: Parents as sexual health educators
I will explore parental attitudes about their own ability and obligation to be a
sexual educator for their children? Do parents feel able to provide adequate sexual education to
their children? Do parents feel that sex education is useful for their children? Do parents
support the right to sexual education?
Current literature supports sexual health education for people with id. According to
Michelle Ballan, “One factor increasingly associated with reduced or delayed sexual behavior is
communication between parents and their children about sexual health.” (M. S. Ballan, 2012, p.
677) Knowledge has positive outcomes in terms of potentially dangerous sexual activities.
Ballan, in another study, points out that no empirical data shows that sexual health education
leads to experimentation in people with id. (M. Ballan, 2001, p. 15) Natalie Gougeon, in her
article about sexuality education for students with id, makes the critical comment that current
sexual health curriculum, as it is currently being presented, actually promotes sexual
incompetence (Gougeon, 2009, p. 277). Rather than being a reason to stop sexual health
education, this claim is really a call to making sexual health programs better.
If sexual health education is a positive and useful thing, it must be presented by
professionals and parents who feel that sexual health education is purposeful. Unfortunately,
much of the literature shows that a significant amount of parents feel that sexual education will
have a negative or no impact on children with id. For example, one parent felt reluctant to talk
30
about sex with his 12 year old son with id because, he felt it would be irrelevant to his life and
would distract him from other things in his life. (Ballan, 2012, p. 680) Another example of
parental feelings against sexual health education comes from the study of mother’s attitudes
about sexuality by Pownall. In this study, Pownall found that mothers discussed sexual health
issues with less detail, at a later age and on fewer topics than mothers with children without
intellectual disabilities (Pownall et al., 2012, p. 147, 149). I would interpret this phenomenon as
being motivated by feelings of inadequacy and incapacity on the mother’s part. The fact that
mothers also were less inclined to discuss abstinence and sexually transmitted diseases suggests
that these mothers do not think their children are likely to engage in sexual behaviors with others
(Pownall et al., 2012, p. 148). It also supports the notion that children with id are not capable of
understanding detailed information about sexuality in the same way as non-intellectually
disabled children. Pownall supposes that many mothers actually feel that sexual health education
may provoke unnecessary anxiety within their children (Pownall et al., 2012, p. 151).
There are several examples in the Literature that show, even if parents want to be
involved in sexual health education with their child, they feel inadequate to the task. Brown and
Pirtle claim that parents do not feel prepared in discussions of sexual health (Brown & Pirtle,
2008). When they do engage in discussions, they tend to focus more on biological factors, rather
than social factors. The fact that social issues are much more nuanced and complicated shows
that parents may feel unprepared to deal with complicated issues of sexuality. Pownall points
out that mothers of young people with ID reported having fewer sources of informal support.
(Pownall et al., 2012, p. 150)
Given that many parents feel sex education is unnecessary or harmful and they feel
unable to provide adequate guidance, there is a clear need for education of parents to help them
31
recognize and accept the emotional and sexual needs of people with id (Mccabe & Ph, 1999, p.
159). Furthermore, the development of sexual health programs should involve parents, among
other stake holders. (Gougeon, 2009, p. 283) In order to involve parents, it is crucial to that
parents come to feel that sexual health education is important and that they have an important
role it its delivery. This conclusion is one of several practical implications of this capstone
project. After all, it is pointless to simply point out deficits or problematic beliefs of parents
without working towards meaningful solutions and support mechanisms for parents.
Multicultural Issues
This capstone project has been mostly an exploration of parental attitudes of parents in
Canada. It has been impossible to distinguish between different regions of Canada or attitudes of
people from different cultural backgrounds. It is almost certain that significant differences exist,
however. This is one reason why, in Chapter 3, I will propose a qualitative, interview based,
study that focusses on one small region of Canada: Surrey, B.C. I feel that this kind of study will
be more useful to professionals who hope to develop appropriate interventions.
One thing the existing literature can do is give a glimpse into attitudes form other
countries. I was able to find studies based out various countries in Europe, Australia and India.
As multicultural perspectives is not the focus of this project, I will not delve too deeply into this
arena, but I will share some key observations based on the literature.
From Australia, Cuskelly and Bryde assessed attitudes in parents and care givers about
people with intellectual disabilities (Cuskelly, Bryde, & Centre, 2004). It was found that parents
are more conservative than staff care givers. By conservative, the authors refer to attitudes
32
supporting restriction of sexual behaviors. For example, parents were less positive about people
with id having children.
Another key observation the authors point out is that attitudes are affected by age; the
older the person, the more conservative the attitude.
From Ireland, D.S. Evans came to similar conclusions. Parents, in this questionnaire
survey, were less open to discussing issues of sexuality with people with id and these attitudinal
differences are affected by the age of the care giver (Evans et al., 2009)
In a fascinating study from Sweden, the author sought to find information about the
hindrances and opportunities young people with id have in expression of sexuality. The study
was done through observations at organized dances for people with id and interviews of parents.
One key conclusion was that parents feel responsible for their children’s sexuality and act as
disciplinarians toward their children (Löfgren-Mårtenson, 2004).
Without evidence, many people would assume that India is a country in which parents
may have the most negative of attitudes, especially compared to contemporary Canada.
However, two authors have tried to counter this narrative by identifying positive perceptions in
parents of children with id. The authors begin with a very eloquent acknowledgement of the
negative narrative:
Existing studies reveal that very often the parents have a negative attitude towards their
child with disabilities. The parents are plagued with feelings of pessimism, hostility, and
shame. Denial, projection of blame, guilt, grief, withdrawal, rejection, and acceptance are
the usual parental reactions. Some parents also experience helplessness, feelings of
inadequacy, anger, shock and guilt whereas others go through periods of disbelief,
depression, and self-blame. (Gupta & Singhal, 2004, p. 23)
The authors seem to contradict these attitudes by generating a very interesting thesis.
The authors found some evidence of positive feelings in parents. One study showed that father’s
feel stress and negativity, but also strong positive feelings and claims of personal growth. The
33
authors add an interesting interpretation for the existence of positive feelings. Specifically,
positive feelings serve as a coping mechanism for parents. “Existing individual and family
focused theories suggest that positive perceptions play a central role in the coping process.”
(Gupta & Singhal, 2004, p. 25) This is an interesting perspective, because this capstone project
has shown that certain parental attitudes have negative impacts on people with id and other
parental attitudes can have positive impacts on people with id. Gupta turns this concept around
and shows that attitudes also have positive impacts on the parents themselves. This actually
reinforces the powerful impacts of attitudes on parents and children.
Summary
This capstone identifies the problem that people with intellectual disabilities experience
challenges and roadblocks in the process of sexual exploration and identification. People with
intellectual disabilities have a hard time forming and maintaining romantic relationships. The
Question under investigation is: What are the attitudes and beliefs of parents of children with
intellectual disabilities that have a negative influence on the capacity of their children to explore
and develop sexual identities?
The literature confirms that the problem really exists and has offered some insight into
the question under investigation. It has been difficult to quantify the impact of parental attitudes
and it has been difficult to create a monolithic image of a typical parent. However, the literature
has allowed me to identify key detrimental parental attitudes, beliefs and feelings about their
child’s sexuality. I have shown that many parents fear sexual exploitation and abuse. As a
result, parents may become overly protective of their children. I have discovered that many
parents are deeply concerned about the right of people with id to have children. As a result,
34
forced contraception is a risk. I have identified that parents are afraid that their children will
engage in inappropriate public behaviors. This can lead parents to feel reticent about providing
knowledge of their children for fear that they will be encouraged to participate in inappropriate
behaviors. I have exposed anti-homosexuality in some parents which inevitably leads to
repression of sexual expression of people with id. Finally, I have revealed attitudes of antipathy
and/or incapacity towards providing sexual health education for people with id. These attitudes
inevitably lead to poor or non-existent sexual health education. The lack of properly developed
sexual health education is demonstrably harmful to people with id.
There are many remaining questions that I have after this literature review. There are
things I would like clarified. For example, I am very interested in finding more information
about cultural differences within Canada and I also want to know more about differences related
to the gender of parents and the gender of the children. Certain claims that I have made are open
to different interpretation as well. For example, the anti-homosexual attitudes I have identified
may have little to do with intellectual disabilities, but reflect a generalized prejudice.
Furthermore, I am not claiming to have provided a comprehensive exploration of the topic of
parental attitudes. There is so much room for further study. In Chapter 3, I will offer one
possible contribution to this field of study.
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Chapter 3
Introduction
Parental attitudes about the sexual development of their children with intellectual
disabilities have the potential to limit or negatively impact the development of their children into
fully realized sexual beings. As was demonstrated in Chapter 2, this topic clearly requires more
research to come to a more precise thesis. At this time, the most specific claim I can make is that
negative attitudes are based on fear and ignorance but not generally based on lack of care. My
research proposal is an activity that may provide more practical insight for educators in the city
of Surrey and throughout the province of British Columbia.
Purpose
To obtain “first person perspectives” about parental attitudes regarding the sexual
development/ education of teenagers (13-18) with mild intellectual disabilities who attend
Special Education programs in Surrey public schools. Such perspectives will inform the
development of sexual health education/ interventions for school based staff working with
students with intellectual disabilities.
As many authors have already acknowledged, any effective sexual health program, does
require the meaningful input and coordinated participation of all stake holders. As young people
have to spend much of their social time at school, it makes sense that educators will, inevitably,
have to provide some guidance to the children in order to ensure the greatest chance for healthy
sexual development. If this guidance is informed by the attitudes and perceptions of parents,
such guidance has a better chance of being effective,
Methodology
36
I propose a qualitative, interview-based, research study. The interviews would take the
form of an in-depth one-on-one interview. Extraction of themes through phenomenological
approaches. Analysis of data requires the identification of the essential experiences of raising a
child with id as they enter into the process of sexual maturation. Through an identification of
common essential experiences, an understanding of the origin and justification of various
attitudes held by parents will emerge. For example, I might be able to find common origins for
fear of sexual abuse or exploitation.
Initially, parents would be asked to share their beliefs and experiences with dealing with
the sexual development of their children. The question might be framed like this: When you
think about your child growing into adulthood, what thoughts and feelings do have regarding
his/her sexual development and experience? The question is neutral and does not necessarily
elicit negative responses. Participant responses would guide the progression of the interview.
The interview would be open ended and free from a specific agenda. However, there
would be some guiding questions for the interviewer to refer when conducting the interview.
There are three key guiding questions. First, what are your hopes for your child regarding
romantic relationships? Second, what are your feelings about the possibility of your child having
children of their own? Finally, could you describe the type of sexual health education that would
be most useful to your child? These questions, should reveal attitudes about a broad range of
topics.
Before the interview begins, participants will be asked to fill out a form asking for certain
demographic information. The interview process will consist of one 60 minute interview with a
follow up interview if deemed necessary by the researcher. The time frame for the interview can
be flexible. Interviews will be audio recorded and data will stored in a sufficiently protected
37
space. The protected space will be in accordance with ethic board requirements. Information
will be kept in a locked filing cabinet and electronic information will be saved onto a hard drive
and stored in the locked cabinet. Labels and names will be coded to ensure that no one other
than the researcher will be able to breach the privacy of the participants.
After the author has organized the data into themes of commonality, the author will share
these findings with the parents to ensure that the author’s interpretation is consistent with the
parent’s feelings. The data will be organized by the author with interpretations and submitted for
peer review. The peer feedback will be used to create an article that is academic in nature.
Participants.
I propose to interview the parents of 10 different families. Interviews would be with
parents with children who have a Mild Intellectual Disability. I would want to limit my
interviews to parents of children with mild intellectual disabilities rather than moderate to severe
disabilities. I suspect the attitude differences would be great enough to justify a second study of
that particular group. In order to ensure cultural diversity, I would send out translated versions
of my study proposal so that as many people as possible would read and understand the research.
Ethical considerations.
I will do everything I can to ensure that the interviews and data gathered does not violate the
privacy of children with id. As the interviewer, I would talk to parents from unidentified schools
and use pseudonyms. These procedures would be consistent with the guidelines set out by the
research ethics board.
To what extent is the permission of the children needed in order to proceed with research
interviews? The anonymous nature of the interview should alleviate this concern. However, it
38
should be acknowledged that children with intellectual disabilities should have the same rights as
children without intellectual disabilities.
Before starting, I will need to determine the legal limits or roadblocks to offering meaningful
sexual health education in Surrey public schools. At this time, it is standard practice to gain
permission of the parent before providing formal sexual health education in Special Education
programs. In order to actually do this research, I would need to obtain permission from the
school board.
Logistical/ practical considerations.
Multicultural Issues.
I naturally will want to incorporate the variety of multicultural perspectives reflected by the
diversity within the Surrey school district. Identifying attitudinal differences based on cultural
variables will help future researchers have deeper insights into the origin of attitudes and give
guidance into more specific and culturally sensitive interventions. Surrey is very diverse and it is
problematic to assume that all parents in Surrey are the same. Depending on the cultural
background of the parent, I would expect significant differences in attitude. I will have to
identify the cultural background of each parent interviewed. Even so, it will be impossible to do
enough interviews to adequately represent the diversity of Surrey. Therefore, this will be an
acknowledged limitation of the research proposal.
Number of Participants.
The ideal number of interview participants is important to consider. As this research is not
quantitative in nature, the number of participants can be relatively small. However, I will want
to interview enough people to ensure, I have some information about each age group (Grade 8-
12) and each gender.
39
Individual or group interview.
Mothers and fathers will be interviewed separately. Given that one participant may dominate
the discussion, I would interview each person separately. It might be interesting to analyze
different responses of couples. It will be also important to note any significant different attitudes
of mothers and fathers. It will also be important to identify differences parents of boys and
parents of girls.
Location.
Ideally, interviews will take place in a comfortable, private off site area. The volunteer’s
home might be acceptable if the child is not home. Participants will hopefully reveal some very
personal feelings; it is important that they feel comfortable and unchallenged.
Delimitations
Certain protocols will be implemented to address possible bias issues. Volunteer parents will
likely have different attitudes than parents who do not wish to participate. Obviously, I won’t be
able to interview non volunteers. This is a limitation to the validity and reliability of the
research. This will have to be acknowledged.
Reliability and Validity
Nahid Golafshani helps researchers consider the meaning of reliability and validity in
qualitative research (2003).
Reliability and validity are conceptualized as trustworthiness, rigor and quality in

qualitative paradigm. It is also through this association that the way to achieve validity
and reliability of a research get affected from the qualitative researchers’ perspectives
which are to eliminate bias and increase the researcher’s truthfulness of a proposition
about some social phenomenon. (p 604)
Therefore, in order to make my research reliable and valid, I will need to demonstrate
trustworthiness, rigor and quality in my research. To me the only way to do this is through
40
complete transparency of process. Some ways to demonstrate transparency is through excellent
record keeping, a clear justification for choices and sharing interpretations with other
professionals, when appropriate.
As a BASES teacher, I exist as a subjective participant in the research. I have no personal
involvement with people with id, but I have worked for over 15 years in the field of Special
education and I have naturally developed my own biases. I want to see full sexual health
education in schools which is supported by parents who want to help their children develop
socially appropriate and fulfilling lives that include opportunities to express one’s sexual nature.
In my time as a BASES teacher I have made many personal observations of obstacles that
teenager’s face. I have seen many young adults attempt to express sexual feelings in
inappropriate ways because they didn’t the right way to do something. Many of the students
who have graduated from my school are not receiving full social experiences, and therefore, feel
lonely and isolated.
A description of the instruments used and reasons for choosing them.
The instruments used for the research will be very minimal. First, I will want an audio
recording device with enough storage to have the many hours of interviews. The audio device
will be used to create accurate transcripts. I also hope to make the interview as informal as
possible, I will want do as little note taking during the interview as possible.
Second, I will ask participants to fill out a form asking for specific demographic information.
The form will help me tease out certain themes. For example, do attitudes differ based on age of
parents? Do attitudes differ based on cultural or religious background?
Limitations or possible weaknesses of the research design or findings.
41
I feel that this research design will have practical usage for educational professionals in the
Greater Vancouver area. However, the research may have reduced relevance the older this
study gets. Attitudes can be surprisingly temporary and fleeting. Also, the relevance of the
study decreases the farther one is away from Surrey.
As this research would be the first formal research by myself, it, inevitably, would be
susceptible to mistakes in design and execution that a more experienced researcher would not
make. For example, this type of interview based research is very susceptible to the interviewer
unknowingly guiding the interview into pre-ordained themes. It is also possible to let earlier
interviews influence the way future interviews progress. It will require a skilled and self-
reflective researcher to successfully execute the research.
Assumptions that are present about the research or research subjects.
All researcher enter into research with some assumptions. This is only natural because
researchers probably have already done lots of investigation of the issues and have developed a
keen interest in the subject. Researchers may also have political biases and have specific social
goals for their research.
First, one assumption that I will have is that parents are dealing with above average stress in
their life. The extra support needs of their child may put financial, social and emotional stress on
parents. The knowledge that their child will require specific supports throughout life may also
cause significant distress in parents. Finally, I am aware that many parents still feel guilty about
their children’s condition. I don’t think I would assume that all parents feel guilty, but I would
be attuned to that attitude and would be looking for evidence of guilt. I would have to make sure
that these biases do not improperly affect the results of the study.
42
Second, I will be inclined to assume a prejudice in the parents for safety over risk taking. As
a result, I will expect to find evidence for restrictive policies or procedures in the home. Typical
freedoms given to non-disabled children may not be afforded to children with id. When this
happens, I am likely to assume this is because of parental bias towards safety.
43
Chapter 4
Summary
Chapter 1
In Chapter 1, I outlined a general problem that people with intellectual disabilities face in
their lives. Specifically, sexual rights and freedoms are often denied, either intentionally or
unintentionally, to people with id. Granted, there has been a blossoming of support for and
defense of people with id over the last 40 years. Inclusive education is a legally sanctioned right
for all. Institutionalization is a feared and despised part of our history. There has never been
such visibility of people with id in mainstream society.
However, many adults with id have desires to get married, have children and engage in
sexual activity in the same way as non-disabled people and they are not able to fulfill these
desires. It is not oppressive laws that are thwarting people with id. I posit that it is cultural
norms and expectations that are thwarting people with id.
One group of people who have the potential to hinder sexual identity formation and
expression of people with id is parents of people with id. In Chapter 1, I gave myself the task of
determining the attitudes and beliefs that parents may have that hinder the rights of sexual
expression for people with id.
Chapter 2
Through a review of existing peer reviewed studies, I was able to identify 5 key thematic
topics that reveal the plethora of harmful attitudes parents often have towards their children with
id. The overall finding was not that parents feel their children do not deserve sexual freedom.
Rather, parents really do want their children to be happy, but the fear they feel causes them to
overprotect their children from perceived threats. Some parents fear the potential for sexual
44
abuse and exploitation. Some parents think that sexual education may actually promote unsafe
sexual exploration. As a result of these fears, some parents overprotect their children and shield
them from normal and healthy sexual experiences.
Chapter 3
In Chapter 3, I proposed a qualitative interview-based research study designed to find
more practical information about the attitudes of parents of children with id in Surrey, B.C. I
designed a study that would provide educational professionals with insight into the attitudes and
beliefs of parents living in Surrey, B.C with children attending public high schools.
Although I did not actually conduct the study, I think this study would be very helpful for
educational professionals who want to develop the most effective sexual health education
programs for young people with id. I hope that this study will promote understanding and
communication between the professional and family supporters of people with id.
Implications:
This capstone project has shown me that the effort to fully include people with id in
society is not complete. Advocates need to continue the struggle and fight for the rights and
freedoms of people with id. For educational professionals, I can think of three specific
implications of this study.
First, Individual Education Plan (IEP) meetings with parents and Special Education
teachers should include a discussion of sexual health. Sexual health is a very important social
domain that should be addressed in every IEP for children with intellectual disabilities. Parent-
teacher meetings are excellent formal opportunities to discuss a sensitive topic in a professional,
45
yet caring and personalized manner. It is also a great way to give voice to parents who may feel
excluded from the educational process.
Secondly, if Special Education teachers and Counsellors need to engage in conversation
with parents about sexuality, it becomes very important that there are professional development
opportunities for Special Education teachers in Sexual Health readily available. Not only do
Special Education teachers, counsellors and administration need to be aware of the content of
Sexual Health curriculum, they need to be trained on how to communicate with parents about
such sensitive topics. In my experience, I have met many teachers who are afraid to talk about
sexuality with students with intellectual disabilities and terrified of talking to parents. If regular
training and support is offered by Professional organizations, then teachers may feel more
comfortable dealing with this important educational need of students.
Finally, Sexual Health Education programs need to be developed with an up-to-date
understanding of parental fears and concerns. I think this study has shown how significant an
influence parents are on the sexual development of children with id. Parents can be either
powerful supports or impediments to their children. No sexual health curriculum can be
effective without parental support.
Conclusions:
A capstone project requires a commitment of much time and energy. For this effort, the
reader and the writer hope to be rewarded with a greater sense of clarity and purpose in regard to
the problem identified and the questions under investigation.
The first conclusion I have come is that harmful parental attitudes are generated from fear
and ignorance. Generally speaking, parents want their children to have happy and full lives,
46
even in the realm of sexuality. However, fear of abuse and exploitation can distort the efforts of
parents to support their children. Also, ignorance about the effectiveness of sexual health
education has paralyzed some parents. Many parents feel that sexual health education is either
useless or harmful to their children. The two clichés, “ignorance is bliss” and “a little knowledge
is a dangerous thing" come to mind when trying to understand the source of negative parental
attitudes. Educational professionals need to combat this level of ignorance and prove that
knowledge is power for people with id and leads to greater safety and happiness.
A second conclusion I have come to is many parents feel desperately alone and
unsupported by the professionals. The responsibility of raising a child with id can be
overwhelming. However, it is a fact that parents are expected to stoically and competently raise
their children. Greater efforts have to be made to bridge the gap between parent and
professional. As a professional, the only way to make progress in this issue is present ourselves
in an honoring, respectful and co-conspiratorial manner. Professionals do have much to offer,
but it will not be heard if we talk down to parents and claim to be “The Expert”.
The final conclusion I can share is that there is much evidence to feel optimistic and
hopeful for people with id. Although this capstone focused on potentially harmful attitudes,
through my readings and my experience in Special Education, I have seen evidence of caring,
dedicated and educated parents who are supporting children in innovative and progressive ways.
Recommendations
The research proposal from Chapter 3, if completed, will provide a temporary insight into
the attitudes of a particular group at a particular time. This will be useful, but attitudes typically
change and evolve. Therefore, it will be important for researchers to continue tracking attitudes
47
into the future. It is important to track trends over time, because trends give insight into the
effectiveness of interventions.
If we accept the important role parents have in delivering sexual health education to their
children, we also have to offer meaningful educational training to parents. We can’t expect
parents to know everything and be prepared to teach their children complex things without any
educational support. Sexual health professionals need to offer their knowledge and experience to
parents who seek knowledge and guidance. I recommend that the Educational and Health Care
systems work together to offer formal and systematic educational courses for parents about the
sexual health of children with id.
Finally, I recommend that schools continue to make efforts to include students with id in
formal school events like dances and Senior Formals. These are events where all children
practice sexual rituals in safe and supportive environments. Children with id definitely need
these structured social events as much or more than all other students. From experience, I know
that facilitating the inclusion of children with id in extracurricular events can be challenging.
However, I can also say the benefits are huge, and I will continue to help my students participate
as much as possible in these events.
48
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51

An Investigation Into Parental Attitudes About Sexuality and Children With Intellectual Disabilities

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Running head: Parental Attitudes about Sexuality and Intellectual Disabilities

AN INVESTIGATION INTO PARENTAL ATTITUDES ABOUT SEXUALITY AND

CHILDREN WITH INTELLECTUAL DISABILITIES

In Partial Fulfillment of the Requirements

For the Degree of Master of Education in School Counselling

on my experience from my Teacher Education, Special Education training and my Counselling

useful document for myself and others.

anything in my practice. If I do not implement any of the practical recommendations I will be

finished I know that this project will enrich my life significantly.

time forming and maintaining romantic relationships because of lack of opportunity or

ignorance. The problem is exacerbated by feelings of isolation and overwhelming stress. As a

changes of attitude over time.

Key words: Sexuality, Intellectual Disability, Education

Chapter 1: The Problem 7

Chapter 2: Review of Literature 14

Chapter 3: Suggested Research 36

Chapter 4: Summary, Conclusion and Recommendations 44

chapter will establish a tone of professional curiosity, empathy and passion.

Statement of the Problem

attempt to engage in meaningful and satisfactory sexual exploration.

about reproductive management. Furthermore, parents of children with id generally feel

unprepared to provide appropriate sexual health education.

Purpose of the Study

As an educational professional, my primary goal in this project is to provide practical and

with the appropriate stake holders regarding any educational issue.

unique insights and understandings about the needs of their children.

Statement of Evaluation Questions

Importance of the Study

hope of avoiding these unfortunate incidents.

education without having the appropriate training and supports.

delivered by parents and professionals together in a coordinated manner. Therefore, clear

meaningful communication between parents and professionals.

and productive discussions of sexuality. The benefits will be significant.

Scope of the Study:

practice in order to improve my craft.

children to explore and develop sexual identities?

possible to quantify such attitudes based on a survey of current Literature.

professionals in order to facilitate meaningful communication between parents and professionals

meaningful and satisfying lives.

Outline of the Remainder of the Paper

Statement of Evaluation Questions section.

educational professionals who support young people with intellectual disabilities.

avoid abuse or exploitation. I am interested in exploring the following questions. Do parents

parents support the right to sexual education?

wish to develop meaningful interventions and support systems in place.

several key and important concepts.

Terms and Concepts:

attitudes is important because it may help us understand the actions of parents.

An intellectual disability refers to a deficiency in the mental or intellectual capacity of an

individual as based on current psychological procedures and tests. Specifically, the

characteristic of an intellectual disability is an IQ less than 70. Intellectual disabilities also

require a significant impairment in adaptive functioning. This means a person with an id

significant differences in attitude based on the severity of disability. Nevertheless, the

project which I will explore in more depth later.

children with intellectual disabilities. Parents do not have to be biologically connected to

father, or single mother or single father, etc.

d. Sexual rights: A right is a moral or legal entitlement to obtain something or to act in a

e. Sexual Development/ Growth: Theories of development abound from Freud to Piaget to

parents specifically have to wrestle with.