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Sexuality and Disability (2021) 39:357–375

https://doi.org/10.1007/s11195-020-09636-1

ORIGINAL PAPER

Parents’ Plans to Communicate About Sexuality and Child


Sexual Abuse with Their Children with Autism Spectrum
Disorder

Maureen C. Kenny1 · Christina Crocco2 · Haiying Long1

Published online: 4 May 2020


© Springer Science+Business Media, LLC, part of Springer Nature 2020

Abstract
The current study examined intended plans of parents of children (3–18 years) with autism
spectrum disorder (ASD) to communicate with them about sexuality topics including
sexual abuse. Participants included 87 parents/guardians who completed an online survey.
Results revealed that parents are concerned about the sexual victimization of their chil-
dren with ASD. While many have spoken to their children about some aspects of sexual-
ity education, most feel ill-equipped to handle such discussions. Characteristics of ASD
may make prevention programming difficult, and parents worry about ways to teach their
children about sexuality issues. Limitations and implications of the findings are discussed.
Recommendations for sexuality education programming, including child sexual abuse pre-
vention, for this population are provided.

Keywords Autism spectrum disorder · Parental communication · Sexuality education ·


Child sexual abuse prevention · United States

Introduction

Sexuality education is an important, yet often overlooked, aspect of children’s educa-


tion. The American Academy of Pediatrics recommends that parents help their children,
both those with and without disabilities, understand sexuality in a healthy way, as lessons
and values learned at early ages are likely to remain with children as they grow to adult-
hood [1]. They recommend discussing a variety of sexuality-related topics with children,
including a healthy understanding of sexuality and reproduction, dating, sexual orienta-
tion, sexually transmitted diseases (especially AIDS), and contraception. According to
the Sexuality Information and Education Council of the United States [2], “While parents
are—and ought to be—their children’s primary sexuality educators, they often need help

* Maureen C. Kenny
kennym@fiu.edu
1
Department of Counseling, Recreation and School Psychology, Florida International University,
11200 SW 8th Street, Miami, FL 33199, USA
2
University of Miami, 1507 Levante Ave., Max Orovitz Building 230‑L, Coral Gables, FL 33146,
USA

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358 Sexuality and Disability (2021) 39:357–375

and encouragement” (p. 13). While most parents save communication about sexual issues
until adolescence (see review by Dilorio et al. [3]), there is a need for discussions earlier
in childhood. Conversations between parents and their children regarding sexuality should
be an interactive process that begins in early childhood and continues through early adult-
hood. Such discussions should be appropriate for children’s age and developmental level
[4]. Education about and prevention of sexual abuse is one area that should be included in
parental discussions early in a child’s life.
Childhood sexual abuse (CSA) occurs at alarming rates in the United States (US). The
latest figures estimate that approximately 57,964 children were confirmed victims of sex-
ual abuse last year in the US [5]. According to results from three administrations of the
National Survey of Children’s Exposure to Violence [6] an estimated prevalence of 27%
for females and 5% for males, or approximately 1 in 4 girls and 1 in 20 boys. CSA takes
many forms, including contact (e.g., sexual touching and oral, anal, or genital penetration)
and non-contact forms (e.g., exposure [exhibitionism] or photographing a child for porno-
graphic purposes). CSA can be perpetrated by someone in the child’s family (e.g., incest or
intrafamilial abuse). Youth are also at risk of being sexually abused by trusted adults serv-
ing in positions of authority in schools, clubs, sports teams, and churches [7]. The results
of CSA on youth are far reaching and can cause a multiplicity of emotional and behavioral
problems into adulthood [8]. While all children are at risk of victimization, there are some
characteristics that make certain children more vulnerable to sexual assault. One of those
characteristics is the disability that children may experience, such as autism spectrum dis-
order (ASD).

Review of CSA in the ASD Population

The current prevalence of ASD is reported to occur in 1 in 59 children, with the preva-
lence being four times more common in boys than girls [9]. Parents of children with ASD
have many concerns about their children, including their achievement, learning problems,
self-esteem, and potential of bullying [10]. Another area of concern may be risk of sexual
victimization [11, 12], yet there has been little examination into this topic. Much of the
research conducted on sexual abuse has been done with children with disabilities but with-
out specifying what type of disability.
Literature has yet to adequately examine rates of sexual victimization in adults with
ASD, but the risk for children and adolescents has been explored [13]. Research has
confirmed that children with disabilities are 2–3 times more likely to be sexually abused
(including raped) than children without disabilities [13, 14]. In fact, preschool-aged chil-
dren with disabilities experience significantly more sexual abuse than children with disabil-
ities in elementary, middle school, and high school-aged groups [14]. Mandell [15] found
that 16.6% of caregivers reported their child with ASD had been sexually abused. Brown-
Lavoie et al. [13] reported that 78% of their respondents with ASD reported at least one
instance of sexual victimization, compared to 47.4% of comparison group.

Risk for CSA in Children with ASD

There are several features of ASD that may make individuals vulnerable to sexual assault.
Social deficits, a core symptom of the disorder, can make differentiating between behavior
that is acceptable in private and behavior that is acceptable in public difficult for individu-
als with ASD. These deficits may also impede their ability to recognize abusive situations

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Sexuality and Disability (2021) 39:357–375 359

or violated boundaries. Social deficits can also contribute to social isolation, making indi-
viduals with ASD more vulnerable to perpetrators [16], as CSA can take place in private
settings. Misunderstanding the actions and intentions of others can also be a result of ASD
[17] and can contribute to victimization. Nichols [12] state that individuals with ASD
“may experience difficulty recognizing the ‘red flags’ of dangerous situations and interpret-
ing the thoughts, feelings, intentions, and behavior of others, making the risk of exploita-
tion higher.” (p. 73).
Theory of Mind (ToM) is one way to explain the difficulty individuals with ASD have
understanding the intentions and actions of others. ToM suggests that ASD limits the
capacity to attribute mental states to oneself and to others, as well as comprehend that peo-
ple have beliefs, desires, and intentions that are different from one’s own [18]. When look-
ing at the potential for interpersonal relationships, ToM suggests that individuals with ASD
would struggle in this area due to difficulty judging the intentions of others. Understanding
what another person is thinking or feeling is necessary for meaningful relationships, yet
difficult for individuals with ASD due to the nature of their disability. This inability to sep-
arate one’s own intentions from the intentions of others presents a danger when it comes to
the potential for sexual abuse among this population.
Kim [16] discusses the dependency of children with disabilities on their caregivers for
activities of daily living and thus the possibility of abuse from those caregivers. These chil-
dren may not have the necessary vocabulary or communication skills to disclose abuse.
It is believed that children with disabilities have been taught to be compliant with adult
requests and this compliance may led to passivity [16, 17] when adults are abusive. This is
supported by Sobsey [19] who found that the largest group of identified sexual abuse per-
petrators for children with disabilities was service providers (31%), followed by acquaint-
ances and neighbors (16.5%), family members (15.5%), peers with disabilities (9.1%),
while strangers only accounted for 6.6% and people they have never met accounted for .0%.
Beyond sexual abuse, there has been research to examine the sexual behavior of youth
with ASD. Stokes and Kaur [20] found that there is a difference between typical ado-
lescents and adolescents with high functioning autism (HFA) in sexual behavior that is
consistent with the nature of their disorder. Adolescents with HFA tend to display poorer
social behaviors and more inappropriate sexual behaviors (e.g., masturbated in public,
removed clothing in public, constantly calling a romantic interest after being told not to).
They engage in fewer behaviors related to privacy, have poorer knowledge regarding pri-
vacy issues, and have less sex education when compared with typical adolescents.

Parents and Sexuality Communication

Parents of non‑ASD Youth

Sexuality education discussions are imperative in prevention, as research has shown that
lower levels of sexual knowledge are associated with likelihood of being sexually assaulted
[13]. Despite this necessity, most parents are unsure of how to have such discussions with
their children. Many parents are reluctant to discuss sexual matters with their children and
those that do discuss often do not feel confident or prepared [21]. Deblinger et al. [22]
examined parents’ efforts to educate their children about sexual abuse. They found that par-
ents of school-aged children continue to disproportionately focus on strangers as potential
offenders and provide limited information about sexual abuse to their children. Parents with
no direct (personally experienced CSA) or indirect (knew someone who experienced CSA)

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360 Sexuality and Disability (2021) 39:357–375

experience with child sexual abuse were least likely to talk with their children about the
issue in general and when they did so, they provided less information. Kenny and Wurtele
[21] found that Latino parents of preschoolers (compared to Caucasian parents) intended to
discuss sexual abuse/molestation at an earlier age, but planned to discuss human reproduc-
tion, intercourse, and AIDS at significantly later ages. More recently though, research has
found that the majority of Columbian adults believed that sexuality education was neces-
sary and that it should address all aspects of sexuality with both male and female adoles-
cents [23]. In a sample of parents across a province in Canada, Byers et al. [24] found that
many do not appear to be providing detailed sexuality education to their children. Although
parents with better sexual health education from their own parents were somewhat success-
ful discussing biological topics, their reports indicate that they still had difficulty discuss-
ing more sensitive topics (e.g., sexual coercion and assault, sexually transmitted infections)
and encouraging their children to ask questions.

Parents of Children with ASD

Parents of youth with ASD share many of the same concerns as their counterparts with
typically developing children, but research has shown that they have some additional con-
cerns about sexuality education. In the Ballan [17] study, parents of children with ASD
verbalized a strong desire to communicate with their children about sexuality, but felt they
were not adequately prepared to do so. In focus groups with parents of children with ASD
[12] it was discovered that they felt unclear about what healthy sexuality could look like for
their children. Parents also shared concerns that their children struggle with understand-
ing privacy, boundaries, personal space, and not being able to read social cues. All par-
ents worried that their children could be taken advantage of and possibly raped or sexually
assaulted. At the same time, they were not sure how much information to give their child
or how long to wait until discussing particular topics, and what strategies to use for teach-
ing. The majority of parents in the Ballan [11] study stated that they would be comfortable
communicating about sexuality with their children with ASD, but questioned their chil-
dren’s ability to comprehend the information as a barrier to discussions.
Some parents of children with ASD also feared their child’s behavior may be misin-
terpreted as abusive [11, 12]. For example, a child attracted to a peer’s shirt may touch it
and thus inadvertently touch breasts. Alternately, a child’s expression of affection or inno-
cent curiosity may be mistaken for a sexual approach. Parents desired guidance and educa-
tion in order to assist their children. The parents of children with ASD in the Nichols and
Blakeley-Smith [12] study were unsure how to talk to their children and how to intervene if
they displayed sexually inappropriate behaviors. In Ballan [17], parents acknowledged their
children’s chronological age being widely disparate from their child’s emotional maturity,
thus leading to confusion over what age to discuss concepts. Kalyva and Tsakiris [25]
interviewed parents of adolescents who were diagnosed with HFA. Most of them reported
that they felt awkward talking about their children’s sexuality, which they identified as a
“necessary evil” (p. 131). This was mainly due to the fact that they linked sexuality to
intercourse and not the creation of intimate relationships. They acknowledged that they
avoided discussing it with their children since they thought that this would delay sexual
intercourse. The parents reported that they were afraid that others would take advantage of
their adolescents with HFA (especially the girls) and that they had developed this strategy
mainly as a mechanism to protect them.

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Sexuality and Disability (2021) 39:357–375 361

Ballan [11] further found that all parents were worried about their children being sexu-
ally abused and had talked to them about sexual abuse prevention. In Ballan’s other study
[17], semi-structured interviews with parents of children with ASD revealed that their
greatest fears were the sexual victimization of their children and misperceptions related to
the intent of their child’s behaviors (non-sexual behaviors being perceived as sexual). Par-
ents also shared that others’ limited knowledge of ASD makes it possible for their child’s
behavior to be perceived as sexually deviant. Parents were concerned that despite the many
people involved in their child’s life (educators, medical professionals, therapists, etc.), they
still felt isolated when it came to preparation to discuss sexuality with their children.
Some parents of children with ASD fear that discussing sexual-related topics with
their children will increase their sexual interest or behaviors [13, 26], although this seems
unsubstantiated by research. Byers et al. [27] found that surveyed participants (21–73 years
old, all with ASD) reported a high level of desire, positive attitudes about sexuality, and a
rich and varied fantasy life. Their results counter the misconception that people with ASD
are asexual. Though adolescents with ASD enter puberty at much the same time as their
typically developing peers, this physical maturation is often not accompanied by concomi-
tant cognitive and social maturation [28]. This delayed cognitive development may affect
the ways parents can impart sexuality education to them. Ivey [29] found that parents of
children with ASD were worried about their safety and ability to protect themselves but
also had hopes that their child would one day marry and have children. Thus, these parents
likely have the same desires for their children as other parents but worry about the child’s
likelihood to achieve these goals.
Much research has revealed that parents would like other professionals in the child’s life
to shoulder the responsibility of sexuality discussions. Parents tried to pass on the responsi-
bility of sexual education to their adolescents’ teachers or therapists [25]. While the parents
in the Ballan [11] study agreed that sex education was necessary, they disagreed on the
time frames for educating children with ASD about sexuality and regarded the communica-
tion as either their primary role or a shared role with medical professionals or educators.
Parents in the Thomas et al. [30] (all parents, not just those of children with ASD) believe
that pediatricians should discuss sexuality education. Similarly, 96% of parents felt one or
more topics related to CSA prevention should be discussed by the pediatrician. While they
wanted this discussion, only 45% of respondents reported their child’s pediatrician had dis-
cussed normal sexuality, and 29% had discussed sexual abuse prevention. Thus, these stud-
ies confirm that parents and caretakers would welcome discussions of normal childhood
sexuality and CSA prevention, if conducted by a health care provider, teacher, or therapist.
While this study was conducted with parents of any child (and not solely parents of chil-
dren with ASD), the results are somewhat generalizable.

Purpose of this Study

The present study aimed to examine the intended plans of parents of children with ASD to
discuss sexuality with their children, their knowledge of CSA, and their attitudes toward
CSA prevention. This study was sparked by a growing interest in examining parent–child
discussions of sexuality including CSA in families with children with ASD and the relative
lack of research in this area, as well as the recognition of the increased presence of youth
with ASD in inclusive settings [31]. This inclusion could lead to potential negative interac-
tion and resultant social isolation. The study examined parents own experiences in their
families of origin with sexuality discussions as these have been found to influence their

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362 Sexuality and Disability (2021) 39:357–375

discussions with their children [see 32]. The findings from this study may help inform the
design and development of a parent-based psychoeducational intervention and sexuality
education programs for children with ASD.

Method

Procedure

After IRB approval was obtained, various recruitment methods were used. The researchers
contacted (via e-mail) the directors of all the Florida Centers for Autism and Related Dis-
abilities (CARD). Directors were informed about the study and given a copy of the IRB
approval. There are seven CARD sites in the state of Florida and four agreed to participate
in the study. These sites advertised through their member newsletters or e-mail blasts. An
additional recruitment was done through the special education department at a large urban
public school district in Florida. Take-home letters (in both English and Spanish) were pre-
pared for parents of all classes that contained students with ASD. Finally, the neurology
center at a large children’s hospital in South Florida advertised the study to its patients.
Inclusion criteria included parents of a child(ren) aged 3–18 years, who had a diagnosis
of ASD (this information was self-reported by parents). Interested participants accessed a
hyperlink to Qualtrics, a secure website, which hosted the survey. The survey was delivered
in either English or Spanish and parents selected the language with which they felt most
comfortable. The first item on the survey contained the electronic consent form that out-
lined the nature of the study and explained confidentiality. There was no compensation for
participant involvement in the study. One hundred and two parents accessed the survey in
English while 5 parents accessed it in Spanish. However, not all responses were complete,
so sample sizes vary by analysis based on number of participants responding.1 Also, some
participants reported no intention to ever discuss certain topics, thus they are not included
in the analyses.

Participants

A total of 87 participants between the ages of 20–61 years (M = 41.08, SD = 6.87) com-
pleted the online survey. They self-reported their ethnic identity as Hispanic (49%),
White non-Hispanic (43%), African-American (6%), and African-Caribbean (2%). Par-
ticipants were predominantly female (89%) and most were married (86%). The majority
of respondents were the biological parent of the child (92%; 7% were adoptive parents;
1% were grandparents) and 76% reported that their child(ren) lived in a two-parent house-
hold, while 21% were in a single-parent home and the remaining 3% lived with extended
family. Eighty-eight percent of parents reported English as their child’s primary language,
with the remaining 12% reporting Spanish. Eighteen percent of parents reported incomes
of less than $25,000 annually; 12% reported salaries of between $25,000 and $50,000,

1
Missing values in main quantitative variables (e.g., the extent of parents’ worry for their child being sexu-
ally abused by an adult; the extent of the effectiveness for parents to discuss 15 topics with their child) were
examined by using Little’s MCAR test in SPSS. The result showed that χ2 (679) = 673.17, p = .56, supporting
the assumption of missing at random or no systematic pattern of missing data was found.

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Sexuality and Disability (2021) 39:357–375 363

34% reported salaries between $50,001 and 100,000, and 20% reported incomes between
$100,001 and $150,000 with the remaining 16% reporting salaries higher than $150,000.
On average, parents had two children, with a range of 1–8 children. Based on par-
ents’ report, there were 150 children in the participating families. The age range of all
the reported children was 2–29 years and the mean age was 9.85. All the adult children
have siblings who are 18 years or younger. More specifically, there were 85 first born chil-
dren, including 43 children (10 years and younger), 31 teenagers (11–18 years), and 11
adults (> 18 years). The mean age of this group is 11.09 years. There were 50 second born
children, including 32 children, 16 teenagers, and 2 adults. The mean age was 9.48 years.
There were 12 third born children, including 8 children, 3 teenagers, and 1 adult. The mean
age was 10. There were only 3 fourth born children, including 1 teenager and 2 children,
with the mean age of 9.85 years. There were only 6 parents (8%) who reported two children
in the family with ASD and 1 parent reported three children with ASD, while all other
parents reported just one child in the family had ASD. Given the small number of parents
who have more than one child with ASD, no comparison was made between parents having
only one child with ASD and those having more than one child with ASD.
With regard to their child(ren) with ASD, parents primarily reported that the child’s
means of communication with them was gestures (48%), vocal approximation (39%), cry-
ing (33%) and vocal (17%). Only 2% reported that their child(ren) with ASD were non-
communicative. Thirty-seven percent of the children with ASD were reported to be in
special education classrooms, followed by 26% in a special school, and 24% in general
education classrooms. The remaining children (13%) were reported to be in separate class-
rooms in a general school. Children were also reported to be able to follow one-step direc-
tions (33%), two-step directions (39%), or three-step directions (26%), with the remaining
2% rarely able to follow directions. The majority of children with ASD were described by
their parents as able to follow rules usually (37%), sometimes (34%), often (19%), and not
able to or rarely (11%).

Measures

Demographics

Participants were asked a series of questions to obtain information about their age, ethnic-
ity, gender, and parental status (biological, adoptive, etc.) and annual household income
(several options). They also reported on their experiences with sexual abuse (e.g., victim,
professional, none, etc.). Participants were asked to provide the number of children they
have, ages, ethnicity, and diagnosis for their children as well as the children’s primary lan-
guage. For the child(ren) they identified with ASD, they were asked to provide information
on the child’s educational setting, communication skills, and ability to follow directions
and rules.

Family Life Education Questionnaire [32]

Three of the four sections of this measure were used. These were: (a) questions asking
parents to recall how old they were when their parents (mothers and fathers) talked to them
about sex education and a rating of how effective their parents were, (b) two questions ask-
ing parents to indicate the age at which they first expected to discuss sex education with
their children and to rate how effective they would be, and (c) questions about actual or

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364 Sexuality and Disability (2021) 39:357–375

intended ages and perceived effectiveness for discussing 15 topics. The 15 topics listed in
the survey included: (1) genital (body) differences between the sexes, (2) human reproduc-
tion (how babies are made), (3) birth (how babies are born), (4) masturbation, (5) sexual
abuse (molestation), (6) menstruation, (7) sexual intercourse, (8) dating (sexual and roman-
tic feelings), (9) marriage and divorce, (10) sexual orientation (gay, lesbian, and bisexu-
ality), (11) sexually transmitted diseases (e.g., herpes), (12) contraception (birth control),
(13) abortion, (14) nocturnal emissions (wet dreams), and (15) Acquired Immune Defi-
ciency Syndrome (AIDS).
After each topic was an age scale with ages from 1 to 18 listed. Parents were asked to
select the age that they intended to discuss or had discussed the topic or to select the choice
never if they never intended to talk to their child about this topic. After each age scale, an
effectiveness scale was included. This scale ranged from 1 to 5, with 1 representing not
effective at all and 5 representing very effective. Parents were instructed to select the num-
ber corresponding to how effective they would be (or were) discussing each topic.

Worry About Child Sexual Abuse

Parents were asked to complete a series of questions about their level of worry for their
child on a number of sexual abuse situations, including being abused by another child, an
adult, and engaging in sexual activity. A 5-point Likert-type scale was used ranging from 1
(not at all worried) –5 (very worried).

Knowledge of Sexual Abuse

There were 10 statements about childhood sexual abuse taken from Walsh et al. [33] to
determine parents’ knowledge level. A sample item is, Children are more likely to be sexu-
ally abused by strangers than familiar people. These statements were responded to with
True, False or I don’t know/not sure.

Parental Discussion

Twenty items assessed whether or not parents had discussed certain topics specifically
related to child sexual abuse with their children. Some sample topics were proper genital
names and not taking photos of private parts. The responses were a dichotomous yes/no.
These items were adapted from several other studies [22, 33–35]. Parents were also asked
if they used any aides in their discussions about sexual abuse with their child (e.g., books,
movies) and to name these.

Results

Parents’ Knowledge of CSA

Table 1 shows parents’ responses to statements about CSA. In general, parents had a rea-
sonable level of knowledge of CSA with some misperceptions. For example, the majority
of parents (68%) reported that children are usually believed when they report sexual abuse,
but this is not always the case. Almost all parents recognized that CSA is a problem that

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Sexuality and Disability (2021) 39:357–375 365

Table 1  Parents’ knowledge of childhood sexual abuse


Statements %correct %don’t know

Child sexual abuse is a problem that exists worldwide 99 1


Young children and those in puberty can be victims of CSA 98 1
Only girls are at risk of being sexually abused 96 0
Children are more likely to be abused by strangers 88 5
Even parents who supervise their children may not be able to prevent 85 9
CSA
CSA involves physical force and injuries 80 9
An abuser may take a long time to build a relationship 72 16
Most children who experience CSA will never disclose 66 24
Children who report abuse are believed most of the time 32 21

Answers were converted to correct or incorrect from yes/no

exists worldwide. Only 7% of parents believed that a child is more likely to be abused by a
stranger than familiar people.

Worry About CSA

Seventy-four percent of parents (n = 63) reported that they worry that their child will be
sexually abused by another child. On a five-point Likert-type scale of how much of a
worry this is, parents reported an average of 3.17 (SD = 1.28). Eighty-six percent of parents
(n = 73) reported that they worry that their child will be sexually abused by an adult. On a
five-point Likert-type scale of how much of a worry this is, parents reported an average of
3.62 (SD = 1.25). Forty-three percent of parents worried that their child would engage in
sexual activity with another child under the age of 18 years. On a five-point Likert-type
scale of how much of a worry this is, parents reported an average of 2.66 (SD = 1.40).
Parents’ differences in knowledge about sex, whether they worry about their child being
sexually abused by another child, whether they worry about their child being sexually
abused by an adult, whether they worry about their child engaging in sex with another
child as well as the extent of these worries, whether parents discussed sex education and
preventing sexual abuse were compared based on their demographic background. No gen-
der differences were found in all these aspects. No ethnicity differences were found in all
the aspects except in the extent of parents’ worry about child engaging in sex with another
child (F(3, 67) = 2.88, p = .04). Follow-up pairwise analyses indicated that African Ameri-
can parents have significantly higher level of worry than White non-Hispanic (p = .006)
and Hispanic parents (p = .02).

Parents’ Experiences with CSA and Sexuality Education

Parents reported a range of sexual abuse experiences. Several (18%) knew someone who
had been a victim of sexual abuse or had a close relative who was sexually abused (25%).
Four percent stated their child with ASD had been sexually abused, while 2% stated that
another one of their children had been sexually abused. Seventeen percent (n = 15) stated
that they had been a victim of sexual abuse.

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366 Sexuality and Disability (2021) 39:357–375

Table 2  Percentage of parents Topics %


who indicated they had spoken
about CSA topic with their
Not going with strangers 88.6
child(ren)
Building self-esteem/confidence 85.0
Telling parent where they are going 84.8
Saying no if uncomfortable with touch 83.1
When it’s ok or not ok to have privates touched 79.7
Identify a trusted adult 78.8
Not taking gifts from strangers 78.5
Deciding who touches their private parts 76.9
Anatomical terms for genitals 76.3
To tell a trusted adult 75.0
Preventing sexual abuse 70.9
How to respond to tempting (e.g., candy) 69.6
Not getting into car 69.6
Leave a situation when someone touches them 66.2
Touch they feel uncomfortable 64.89
Touching private parts in private is okay 64.6
Others tell them to keep secrets about touching private parts 63.6
Listening to feelings to know touches 62.0
Sex education 58.8
How to respond when others show privates 55.8
Staying safe on Internet 55.7
Not ok to take photos of private parts 48.1

Sixty-seven percent of parents reported that their parents did not discuss CSA with
them. Parents reported that they were first talked to about sex education at a mean age
of 13.4 (by their mothers) and 17.3 (by their fathers). Participants rated their parents
as being relatively ineffective at discussing sex education (M = 2.15, SD = 1.43). How-
ever, participants rated their mothers (M = 2.56, SD = 1.57) as being significantly more
effective than their fathers (M = 1.74, SD = 1.29) when first discussing sex education, t
(80) = 5.06, p < .001.
Pearson correlations were performed for mothers and fathers separately. There was
no significant correlation between the age at which mothers first recalled discussing
sex education with their own mothers and the actual or intended discussion of sex edu-
cation with their own children, r = .04, p = .74. Because all of the fathers indicated that
their fathers talked to them about sex at the age of 19, which is a constant, the correla-
tion could not be computed. To examine the relationship between parents’ perceived
effectiveness at instruction and the ratings of their own parents’ effectiveness, Pearson
correlations were conducted on scores on these two variables. There was no significant
correlation between how effective their own mothers were and how effective the par-
ticipants rated themselves to be, r = .02, p = .89. The correlation between participants’
fathers recalled effectiveness and the participants’ own effectiveness rating was not
significant, either, r = .09, p = .44.

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Sexuality and Disability (2021) 39:357–375 367

Table 3  Parents’ reasons for not discussing sexuality education with child(ren) with ASD
Statements %
endors-
ing yes

I think I am able to protect my child from sexual abuse 59


I believe my child would not understand about sexual abuse because of his/her communication 51
skills
My child does not seem interested in the topic of sexual abuse 45
I do not know how to explain sexual abuse to my child 33
I can’t find information to help me talk to my child about sexual abuse 32
I think talking about sexual abuse might frighten or upset my child 30
I feel like I don’t know enough about sexual abuse 17
I have not thought about discussing sexual abuse with my child 12
My child is not at risk of being sexually assaulted 11
Sexual abuse is too painful for me to discuss with my child due to personal reasons 8
I am too embarrassed to discuss sexual abuse with my child 7
Discussing sexual abuse with my child is against my culture 5
Discussing sexual abuse with my child is against my religion 4
I do not have time to talk with my child about sexual abuse 4

Parents’ Sexuality Education with Their Child with ASD

Table 2 describes parents’ discussion of sexuality education with their child with ASD. In
general, over half of parents (58.8%) had discussed sexual education with their children.
The most common topics discussed were: not going with strangers (88.6%), telling par-
ent where they are going (84.8%), building self-esteem/confidence (85.0%), and saying no
to an uncomfortable touch (83.1%). The least talked about topic was it is not okay to take
photos of private parts (48.1%). The majority of parents (83%) stated that they had not used
any aids to discuss sexuality with their children. However, for those that did, they used
books or programs offered by youth serving organizations (e.g., scouts, church). Ninety-
five percent stated they had not used television or videos to help discuss sexuality with
their children. When asked if they had used other sources of information, 29% reported
physician, 24% Internet, and 18% partner.
Parents were able to select from several reasons for not talking to their child about
sexuality issues (including checking more than one). The results are presented in Table 3.
Most (59%) of parents reported believing they are able to protect their children from sexual
abuse. Half (51%) reported they do not think their child would understand about sexual
abuse because of communication skills and about half (45%) stated that their child does not
seem interested in the topic of sex. Only a few parents (7%) stated that they are too embar-
rassed to have a discussion about sexual abuse with their child. In addition, when parents
were asked to provide other reasons for not talking to their child about CSA, they were
provided the option of typing in answers. Several parents reported that they did not feel
comfortable and needed guidance or training on how to talk to their child. Other parents
reported a lack of resources or appropriate information to help them given their child’s age
and developmental level. Still other parents stated that they were concerned that their child
would not understand the information and might even misconstrue the words. This includes
one parent who reported having a non-verbal child.

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368 Sexuality and Disability (2021) 39:357–375

Table 4  Mean age (in years) Topics Intended sex Effectiveness


of intended sex education and education ratings
effectiveness ratings for all
topics, by parents (N = 74) SD (N = 74) SD

Genital 5.05 3.85 4.06 1.02


Molestation 7.25 3.85 3.67 1.13
Birth 8.68 4.72 3.72 1.21
Divorce 8.73 4.63 3.71 1.23
Human Reproduction 9.15 4.58 3.66 1.21
Dating 9.73 3.92 3.45 1.23
Masturbation 10.54 4.66 3.44 1.29
Sexual orientation 10.70 4.56 3.68 1.17
Intercourse 10.90 4.44 3.52 1.27
Menstruation 10.93 4.41 3.67 1.30
Nocturnal emissions 12.16 4.36 3.43 1.37
AIDS 12.49 3.92 3.48 1.42
Contraception 12.60 3.78 3.49 1.39
Sexually transmitted diseases 13.34 3.68 3.40 1.37
Abortion 13.59 3.81 3.56 1.38

Note: Effectiveness was rated on a scale of 1 = not effective at all to


5 = very effective

Intended Age of Discussion and Perceived Effectiveness of Discussion

Table 4 shows parents’ ratings of age of intended discussion and perceived effectiveness.
They reported their perceived effectiveness highest for discussing genitals and lowest for
nocturnal emissions. The mean age of discussing the 15 topics ranged from 5.05 (genital
differences) to 13.59 (abortion). To further assess whether there were differences in the
age at which each topic was discussed, we analyzed the age of discussion variable with a
repeated measures one-way analysis of variance with topic as a within-subjects factor (due
to missing data, n = 65). Age of first discussion of the 15 topics was significant, F (8.4,
536.6) = 43.61,2 p < .001 (η2 = .41). Post-hoc tests for topics were performed using Bonfer-
roni’s t for pairwise comparisons at an overall α = .05 level. There were significant differ-
ences among the mean intended ages for discussions of different topics; for example, the
mean intended age for discussion of human reproduction was significantly older than the
intended age for discussions of genital differences and sexual abuse/molestation. The mean
intended age for discussion of human reproduction was also significantly younger than the
intended age for discussions of sexual intercourse, sexual orientation, sexually transmit-
ted diseases, contraception, abortion, nocturnal emissions, and AIDS. However, only mean
intended age for discussion of genital differences was significantly younger than all other
items.

2
The degrees of freedom in F values were not integers because the statistical assumption of homogeneity
of variance was not supported (p < .05 in Mauchly’s test of sphericity) and Greenhouse–Geisser method was
used to adjust the violation of the assumption by using fractional degrees of freedom.

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Sexuality and Disability (2021) 39:357–375 369

Perceived effectiveness ratings ranged from 3.43 (nocturnal emissions) to 4.06 (genital
differences), with a mean effectiveness rating of 3.60 (out of 5) across all topics. Parents
reported feeling least effective discussing sexually transmitted diseases. The effectiveness
ratings were analyzed in a repeated measures one-way analysis of variance with topic as a
within-subjects factor (due to missing data, n = 26). There were no significant differences
in effectiveness ratings for the 15 topics, F (5.1, 126.9) = 1.033, p = .43 (η2 = .04). Bonfer-
roni’s procedure indicated no significant differences in mean effectiveness for the 15 top-
ics. This may be due largely to the small number of participants who rated the effectiveness
for all the 15 topics.

Parental Age

Based on their mean age (41.2 years), parents were coded into two groups: those who
are 42 years old and below and parents who are over 42 years. Several independent sam-
ple t-tests were conducted and results showed that the two groups do not have significant
differences in their knowledge about sex (t(89) = .54, p = .59), whether they worry about
their child being sexually abused by another child (t(85) = .04, p = .30) and the extent of
this worry (t(84) = .27, p = .79), whether they worry about their child being sexually abused
by an adult (t(84) = .88, p = .94) and the extent of this worry (t(84) = .14, p = .89), whether
they worry about their child engaging in sex with another child (t(85) = .43, p = .67) and the
extent of this worry (t(80) = .79, p = .43), and parents’ discussion of preventing sexual abuse
with their child (t(79) = 1.75, p = .09). However, the group of older parents discussed sex
education more with their child (t(80) = 2.25, p = .03).

Additional Statements by Parents

At the end of the survey, parents had the ability to type in any other comments they wanted
to share with the research team. Fifteen parents took the opportunity to share further com-
ments. Some parents provided a brief thanks for the study and giving them a voice. Other
parents reported attempting sexuality talks with their child at different ages but being
uncertain that the information was retained or feeling as though their child could give the
answer but not generalize into “real life.” Some parents shared their own embarrassment
and unease with having these discussions sometimes due to a lack of preparedness, but in
one case, due to the parent’s own history of sexual abuse. One parent shared some abusive
situations her son encountered due to his ASD, which resulted in victimization, harm, and
traumatic responses. This parent stated, “…people with ASD are vulnerable to all kinds of
problems relating to sex, especially when their IQ does not match their physical and legal
age.” One parent reported that the survey helped raise awareness about topics that needed
to be discussed with her child and emphasized the lack of available resources.

Discussion

The results of this paper confirm previous research that the majority of parents of children
with ASD are concerned about the potential for their children to be victims of CSA, both
by peers and adults [11, 12, 17]. Overall, parents of children with ASD were generally
well-informed about the risk of CSA, and many knew a victim of CSA personally or had
been victims themselves. While most parents had talked about sexual education with their

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370 Sexuality and Disability (2021) 39:357–375

children, many did not feel adequately prepared to handle some sexual topics with their
children and reported lacking resources to do so. In general, they did not feel as though
they would be effective communicators about a number of sexual topics. Older parents
(> 42 years) discussed sexuality education with their child more than younger parents. This
study also utilized a sample of parents that had diversity in terms of socioeconomic status
and ethnicity. The children that parents reported on showed a range of abilities, including
being verbal and able to follow one- to three-step directions. However, primarily mothers
(who spoke English) completed the survey and children were largely living in a two-parent
household.
The parents in the current study reported that their parents (families of origin) struggled
with sexuality discussions as evidenced by them reporting that most of their parents did
not discuss sex-related topics with them. Those who were subject to discussions reported
that the discussions took place between 13 and 17 years of age and found their mothers
more effective than their fathers. If the parents in this sample follow their own parents’
example, they will be delaying discussions and perhaps missing important developmental
milestones, including puberty. Discussions about CSA, in particular, should begin early,
especially as many youth (approximately 30%) are victims of CSA prior to age 9 [36, 37].
Parents need to prepare their sons and daughters for all the physical changes associated
with pubescence, most important, menarche (beginning menses) and erections during the
day and at night (i.e., nocturnal emissions or wet dreams [38]). Given that research shows
that girls mature earlier compared to decades ago [39], discussions regarding pubertal
changes should begin early in a girl’s life, preferably between ages 8 and 10 or younger,
especially for early-maturing girls. This applies to girls with ASD as well since research
has also shown that children with ASD develop sexually (physically) at the same rate as
their peers [28]. Many parents felt embarrassed and unprepared to have such discussions,
perhaps related to the absence of such discussions by their own parents. With no model to
follow, it can be difficult to initiate such discussions.
With regard to specific sexuality topics, there are certain topics that parents found easier
to discuss than others. Genital differences was found to be the easiest and abortion the
hardest. This is consistent with other research [21]. There were many sexuality topics that
parents reported they would leave to older ages, including AIDS, sexually transmitted dis-
eases, and contraception. Parents felt least effective to discuss nocturnal emissions. Sexu-
ality educators would be wise to include these specific topics in programs they develop
and help parents increase their efficacy in discussing them. While the current study was
conducted with parents of children with ASD, the results are similar to those conducted
with other parents in terms of parents plans to discuss topics at certain ages and leave more
value laden topics until later ages (see [32, 40]).
A unique advantage of this study over others was the measurement of parents’ knowl-
edge of CSA. Rather than measure parents’ opinions about sexual abuse, this study exam-
ined what they knew about CSA. While parents’ knowledge of CSA was rather good, there
are several areas that parents need education. Although most parents knew that children
are less likely to be abused by strangers than someone known to them, they continue to
emphasize “stranger” concepts in their teachings with their children. For example, 89%
stated they had spoken to their child about going with a stranger and 79% spoke to them
about not taking a gift from strangers. This is consistent with other research that found the
majority of parents (80–95%) focus their CSA-prevention discussions on “stranger-danger”
warnings [22]. Parents need to include safe, trusted adults as potential perpetrators when
discussing CSA prevention with their children with ASD. This is particularly important
given that these children may rely more on others for basic needs and personal assistance.

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Sexuality and Disability (2021) 39:357–375 371

One way to assist parents with addressing the potential of family members or trusted adults
being potential offenders, is to teach their child “body safety rules” and help them under-
stand that no one should break the rules. This eliminates the need to mention specific indi-
viduals but rather extends the discussion to rules. About half of the parents in this sample
believed that their child would not understand sexual abuse because of their communica-
tion skills. The majority believed they would be able to protect their child from sexual
abuse.
Many parents appreciated the survey and commented as such, perhaps indicating their
desire to have open communication about this often taboo topic. Some parents had con-
cerns about their children’s ability to retain the information and apply it to real-life set-
tings. Best practices for CSA prevention programming, particularly with young children
(ages 3–10 years) include longer duration (four or more sessions) and repetition of impor-
tant concepts across spaced sessions rather than massed presentation [12, 41–44]. Just over
half of this sample was Hispanic so results should be interpreted with an understanding of
the cultural factors that may affect their responses. Hispanic culture emphasizes traditional
gender roles where sex is seen as an obligation of the woman. This view of sex inhibits
sexuality discussions [45]. Hispanic ethics and protocol may prohibit the type of open and
direct discussion which is essential for sexuality information to be communicated [45] and
will need to be considered when designing programs for this cultural group.

Need for Increased Programming in the Community and Schools

A primary theme from parents in this survey was a lack of available resources for talking
to their children with ASD about sexuality. This study highlights the need for programs to
provide good-quality sexuality education programs that will improve parent–child commu-
nications about sexual health and sexual abuse prevention. Many parents did not feel com-
fortable having these discussions and also lacked books, videos, or materials that would
be appropriate for their child. There is a need for sexuality educators to join forces with
exceptional education specialists to create curriculum for children with ASD, as well as
their families, which considers the range of cognitive and verbal limitations these youth
may possess. Parents need guidance on sexuality topics and professional assistance in hav-
ing these discussions. Professionals, including clinicians, involved in the lives of children
with ASD need to be open to dialogue about these issues and should likely initiate these
discussions with parents. Sullivan and Caterino [46] recommend that educators should
be prepared to address sexuality with children with ASD in school through interventions
informed by individuals’ levels of cognitive functioning, social skills, and awareness.
While parents are often reluctant to have such discussions with their children, they are the
best educators for their child and can use the opportunity to infuse their values related to
sexuality (e.g., premarital sex, abortion, contraception). As Breuner and Mattson [1] state,
developmentally appropriate, evidence-based sexuality education over time provided by
pediatricians, educators, clinicians, other professionals, and parents is necessary to assist
youth in making informed, positive, and safe choices about healthy relationships, responsi-
ble sexual activity, and their reproductive health.
The active participation of parents in CSA educational programs contributes to the pro-
gram’s success [42, 47, 48]. Simultaneous education of children and parents about personal
safety and sexuality topics allows for increased communication between them, which may
potentially decrease the chance of a child keeping the abuse secret [49]. Including parents
in prevention planning also helps parents make the child’s home and other environments

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372 Sexuality and Disability (2021) 39:357–375

safer for their children as they have the ability to limit the access of potential perpetra-
tors. Involving parents can increase their level of self-efficacy for these discussions and
prepares them to handle questions from their child on sexual matters, thereby increasing
parent–child communication. Parents can also use “teachable moments” to make it easier
to talk about sexual issues with their young children [50]. This strategy utilizes opportuni-
ties that naturally occur to introduce sexuality discussions with youth. For example, toilet
training is a good opportunity to teach a child the correct names of their genitals. Also,
watching television together as a family and discussing sexual themes that arise is another
appropriate opportunity.
Given that the parents reported that their children with ASD were usually or sometimes
able to follow rules and one- to three-step directions, sexuality education could incorporate
simple rules about behavior and touching. Although the cognitive level of these children
was not reported, CSA prevention programming has been implemented with children as
young as preschool [21]. Reviews have consistently concluded that programs which incor-
porate modelling (i.e., demonstrating the skill to be learned) and rehearsal (e.g., role plays)
are more effective than programs that primarily rely on individual study or passive expo-
sure [33, 42, 43, 51–53]. These results can perhaps be generalized to using small-group
instruction with youth with ASD to teach sexuality education. Body Safety Training was
implemented with a young boy with ASD and he made gains in knowledge of personal
safety including appropriate touches [54]. The concurrent deficits in communication, social
skills, and behaviors, which accompany ASD, will have to be considered when creating
programming.
The improved understanding of parents’ views of sexuality education with their children
with ASD and their prevention and education needs may ultimately lead to programming
and services. Professionals, including teachers and physicians, should provide continued
support to parents as they deem sexuality education is critical. Parental concerns should be
addressed as they arise with a child’s changing developmental stages. Sexuality education
experts will need to brainstorm strategies to overcome challenges and obstacles in teaching
children with ASD. Providing opportunities for parents to role-play discussions with their
children will be an important component of programming. Sexuality education, facilitated
by trained individuals who provide accurate information, reduces sexually inappropriate
behavior in youth with developmental disabilities by teaching responsibility and control
[11].

Limitations

A limitation of the study is that parents self-reported their child’s diagnosis of ASD as well
as their child’s ability to communicate. This information was not validated by clinicians.
This led to grouping all functioning levels of ASD (e.g., Autism, Asperger Syndrome, and
other formerly used ASD categories). This sample also self-selected to participate in the
study, and thus, may be more interested or concerned about this topic than those who chose
not to participate. Although our results are based on a small sample from a singular geo-
graphic region, they suggest that parents struggle with providing effective, accurate sexual-
ity education to their children with ASD.

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Sexuality and Disability (2021) 39:357–375 373

Conclusion

As Sevlever and Roth [55] state, “individuals with ASD have the right to a healthy sexual
life and, ideally, sexuality education will serve to assist individuals with ASD in develop-
ing healthy and satisfying sexual lives, while minimizing risk of exploitation of and by
others.” (p. 198). Parents of youth with ASD struggle with ways to communicate with their
children about sexuality, while also remaining concerned about potential victimization. It
is imperative that professionals provide an empathic ear for parents’ concerns as well as a
guiding hand in helping them discuss sexuality in a comfortable, honest, and accurate man-
ner with their children. Given the range of abilities of children with ASD, programs will
need to modify their teaching methods to meet the unique needs of each child.

Compliance with Ethical Standards


Conflict of interest The authors declare that they have no conflict of interest.

Ethical Approval All procedures performed in studies involving human participants were in accordance with
the ethical standards of the institutional and/or national research committee and University IRB (Approval
#15-0489) and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent Informed consent was obtained from all individual participants included in the study.

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