J Autism Dev Disord (2012) 42:676–684
DOI 10.1007/s10803-011-1293-y
ORIGINAL PAPER
Parental Perspectives of Communication about Sexuality
in Families of Children with Autism Spectrum Disorders
Michelle S. Ballan
Published online: 17 June 2011
Ó Springer Science+Business Media, LLC 2011
Abstract To explore the content of communication about
sexuality between parents and children with autism spec-
trum disorders, semi-structured interviews were conducted
with 18 parents of children ages 6–13. Content analysis and
ethnographic summary were used to interpret the data.
Findings suggest that parent’s perceptions of a child’s
behaviors and comprehension are associated with the
likelihood that communication occurs. However, parents
recognize the risks their children experience, with the
greatest fears being sexual victimization and mispercep-
tions related to the intent of their child’s behaviors. This
study provides information on the nature of communication
about sexuality in families of children with autism spec-
trum disorders and can help tailor interventions aimed at
assisting parents to communicate sexuality information
effectively.
Keywords Sexuality
Parent communication
Autism
spectrum disorders
Introduction
Youth with autism spectrum disorders (ASD) are vulner-
able to a range of sexual behavior outcomes. Among these
are sexual abuse and normative sexual behavior associated
with maturation (Edelstein 2010). Yet, the sexual devel-
opment, behaviors and outcomes of young persons with
ASD have been understudied in the empirical literature.
This inattention may be due to misconceptions that
M. S. Ballan (&)
School of Social Work, Columbia University, 1255 Amsterdam
Avenue, New York, NY 10027, USA
e-mail: msb2008@columbia.edu
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individuals with ASD are sexually immature or the pres-
ence of socioaffective deficits renders their sexuality
insignificant (Konstantareas and Lunsky 1997). The few
scientific studies on ASD and sexuality (i.e., Hellemans
et al. 2007, 2010) demonstrate that youth with ASD display
sexual interest and engage in sexual behaviors, not unlike
their peers. However, young persons with ASD tend to
possess less knowledge about sexuality and display more
inappropriate sexual behaviors (Ray et al. 2004; Stokes and
Kaur 2005).
Socially unacceptable sexual behaviors in youth with
ASD may be related to core features of autism. The
impairments defining individuals with ASD (lack of social
and communication skills, along with behavioral fea-
tures), typically necessary for the learning and under-
standing of appropriate sexual interaction, often leads to
errors in social judgment (Gabriels and Van Bourgondien
2007; Ruble 1992). For example, social deficits can
interfere with differentiation between public and private
behaviors and misperceiving others’ intentions resulting
in unsolicited sexual contact. Due to their social limita-
tions, individuals with ASD may innocently engage in
inappropriate or intrusive courtship behaviors in an
attempt to develop interpersonal relationships (Stokes and
Newton 2004). The contribution of their social impair-
ments combined with a desire for attachment and rela-
tionships could lead to committing illegal offenses (Allen
et al. 2008; Howlin 1997; Stokes and Kaur 2005), being
sexually exploited (Tantum 2000) or engaging in risky
sexual behavior.
Risky sexual behaviors include multiple sexual partners,
lack of condom use and lack of birth control use (Centers
for Disease Control [CDC] 1998). Sexual risk-taking
behaviors increase the likelihood of negative sexual health
outcomes like unintended pregnancy, pre-cancerous
J Autism Dev Disord (2012) 42:676–684
changes in the cervix, and contracting STDs, including
HIV/AIDS (Capaldi et al. 2002; Crockett et al. 1996;
Kaestle et al. 2005; O’Donnell et al. 2001). Increasingly,
greater attention has been placed on the prevention of HIV
and other STIs among young persons. This has resulted in
the development of a number of efficacious prevention
interventions designed to protect youth from risky sexual
behavior and negative health outcomes (Kirby et al. 2004;
O’Donnell et al. 2005; Stanton et al. 2004). Although
studies suggest that youth with disabilities are at increased
risk for unintentional pregnancies (Levy et al. 1992), sex-
ual abuse (Blum et al. 2001; Mandell et al. 2005) and are as
likely to be sexually active as their nondisabled peers
(Groce 2003), they are not participating in these interven-
tions. Taken together with the small body of research
specifically focused on youth with ASD, the literature
supports the development of targeted prevention programs
for this vulnerable yet, understudied population.
One factor increasingly associated with reduced or
delayed sexual behavior is communication between parents
and their children about sexual health. A number of studies
have supported the protective function of parent–child
communication as a mechanism for reducing sexual risk
among youth. This literature has been reviewed extensively
(see Jaccard and Dittus 1993; Miller et al. 2001 citations).
Surprisingly, while parent–child communication has been
found to be a predictor of decreased sexual risk behaviors,
studies have yet to explore the role of communication
about sexuality among parents of children with ASD.
This study’s purpose was to better understand parent–
child communication about sexuality in order to inform the
design and development of a parent-based psychoeduca-
tional intervention for parents of children with ASD. The
study reported here is the first component of an interven-
tion project, the Growing Up Aware Program, a tailored,
parent-based intervention program to teach parents how to
be effective sexuality educators for their children with
ASD. The study examined different aspects of communi-
cation about sexuality among parents of children with
ASD. A comprehensive review of the scholarly research on
sexuality and ASD and parent communication about sex-
uality for nondisabled children led to the development of a
semi-structured interview guide with probes. A priori top-
ics were identified based on the current gaps in the
empirical literature, however, the interviews were struc-
tured to allow for the emergence of new content and ideas
beyond the theoretical framework that was imposed by the
study design. The intent was to focus the study on the most
pressing shortfalls in the current knowledge base while
allowing flexibility in the content of the participant
responses. Specifically, the interview guide was formulated
to acquire detailed information on the nature of parent–
child communication about sexuality, explore parental
677
perspectives on knowledge and skills necessary for effec-
tive communication, examine the content of communica-
tion about sexuality, and identify potential barriers to
communication about sexuality.
Method
Design Overview
Seeking to uncover and amplify study participant’s per-
spectives, the in-depth interview provides an authentic
pathway to understanding diversity and neglected areas of
research, with important implications for practice among
underserved and oppressed populations (DePoy et al.
1999). In-depth interviews have been shown to be highly
beneficial for exploratory research and for the development
of empirical models and theoretical knowledge (Padgett
1998). Eighteen in-depth interviews using a semi-struc-
tured questioning format were conducted with parents of
children with ASD. The interviews focused on two primary
questions: (1) What knowledge and skills are needed for
parents to communicate with their children with ASD
about sexuality? and (2) What types of support are neces-
sary for parents to provide sexuality information to their
children with ASD? Numerous probes requesting exam-
ples, clarification or further information about topics such
as sexual abuse, modesty, birth control, puberty etc. were
used.
Recruitment Procedures
Interview participants were recruited from elementary and
middle schools in New Jersey. The largest U.S. study of
childhood autism determined 1 in 94 children in New
Jersey (CDC 2007) have an ASD, a higher rate than the
national average of approximately 1 in 110 (CDC 2009).
Three school districts and one region were randomly
selected from a list of public schools in Bergen county,
New Jersey. All agreed to participate in the study. Toge-
ther, these districts and region serve approximately 350
children with autism spectrum disorders ages 3–21.
Information sessions pertaining to the study were pro-
vided to school personnel. Schools then sent study flyers
and letters supporting the research to parents of children
who met the criteria for participation in the study. Inclu-
sionary criteria was limited to mothers, fathers and legal
guardians of children who were between the ages of 6–13
and had a primary diagnosis of an ASD, as determined by
educational classification. The disparate age range for
children was designated due to the diverse functional level
of social, intellectual and life skills children with ASD
exhibit. There were approximately 190 children in this age
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range with a primary diagnosis of ASD in public schools
within the districts and region.
Approval for this study was obtained from the Columbia
University Institutional Review Board (IRB). Twenty-two
parents contacted the researcher by telephone to participate
in the study. Potential participants received additional
information about the study and were further assessed for
eligibility via a screening script. All eligible participants
received an informational packet by mail. The packet
included an introductory cover letter, two consent forms,
supplemental materials about the project, information
about the funder and a stamped envelope to return one
consent form. The first nineteen eligible parents (parents of
approximately 10% of eligible children ages 6–13), who
signed consent forms for their participation and mailed a
signed copy to the researcher were included in the study.
The other three eligible parents requested to be included
when the intervention was delivered. Study participants
retained an unsigned consent form and received a copy of
the signed original during the time of the interview.
Compensation to offset child care, transportation or other
expenses incurred by parents was provided at a rate of $25
per interview.
Data Collection
Interviews were scheduled to accommodate parents’ child
care requests and work calendars. Interviews occurred at
participant’s homes, work locations and their child’s
school. All parental requests for location and times of
interviews were honored. Data were gathered using a semi-
structured face-to face interview carried out by one of two
research assistants. Examples of interview questions
include: ‘‘What are some concerns about sexuality and
autism spectrum disorders parents may have about their
children?’’ ‘‘What would help improve parents’ ability to
communicate with their children with autism spectrum
disorders about sexuality?’’ and ‘‘What information or
skills might parents of a child with an autism spectrum
disorder need to help their child develop into a sexually
healthy and responsible adult?’’
Research assistants were formally trained interviewers
with a minimum of 3 years of professional employment in
the area of sexuality education or sexual health counseling.
One held a graduate degree in social work, the other was in
the final stage of obtaining her graduate degree in public
health, with a specialization in sexuality. Prior to the
interviews, research assistants reviewed the consent form
with parents which acknowledged that due to the sensitive
nature of the topic, embarrassment or anxiety may occur.
They discussed approved IRB protocol regarding proce-
dures in the event of such discomfort. If any question
caused concern, participants could change the topic, not
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J Autism Dev Disord (2012) 42:676–684
finish their thoughts and/or discontinue the interview and
still be afforded financial compensation. Also, in the event
that a parent became upset during the interview, the
interviewer was trained to guide him or her with empathic
listening and reflection. If the interviewer was unable to
fully ameliorate discomfort, she was to refer participants to
The Arc of Bergen and Passaic Counties for education and
counseling. However, no problems arose during the inter-
views dictating the implementation of these procedures.
All participants were assured of their confidentiality.
Children were not present during interviews nor were they
interviewed. All interviews were audio-taped and notes
were taken with the parent’s permission. Audio-tapes
remained in a locked filing cabinet until transcribed ver-
batim and checked for both accuracy and adherence to IRB
protocol by the research assistant who did not conduct the
interview. Thereafter, the audio-tape was destroyed. The
average approximate duration of the interviews was 1.5 h
(range 59 min to 2 h and 12 min).
Interview transcripts were coded for themes identified
through content analysis (see Patton 2002). Two indepen-
dent coders analyzed and coded the transcripts. A fre-
quency count strategy was then used to compute the
number of times a participant mentioned each identified
theme. Frequency counts serve as a guard against both
respondent and investigator bias (Miles and Huberman
1994). They can also provide a measure with which to
calculate interrater reliability. Reliability checks and fre-
quency counts across the two independent coders revealed
an overall agreement rate of approximately 94%. The
remaining differences were resolved through discussion
among the independent coders.
Results
Sixteen mothers and three fathers participated in the
interviews. Eighty-four percent of participants were mar-
ried, including one couple who was interviewed separately.
To correct for potential error variance in the parental
responses of the one couple interviewed, only the interview
for the primary caregiver, the mother, was reported in the
results below. Thus, results are presented for eighteen
interviews and represent independent perspectives from
only the individual parent deemed as the ‘‘primary
caregiver’’.
The participants had a total of twenty children with ASD
between the ages of 6 and 13. Two participants had two
children with ASD within this age range. Twelve of the
children were between the ages of 6–9 and eight children
were between the ages of 10–13. All but one child was
male. Sixteen of the twenty children were fully mains-
treamed, many with classroom aides, while the other four
J Autism Dev Disord (2012) 42:676–684
children participated in partial mainstream and special
education/resource room settings. Nineteen of the children
used spoken language to communicate.
Employing the analytic strategy depicted earlier, four
content-related themes about sexuality were identified. They
include: misperceptions of children’s non-sexual and sexual
behavior, challenges discussing sexuality with children and
professionals, sexuality information communicated to chil-
dren, and perceptions of children’s future influencing com-
munication topics. A section on ‘‘differences among parents’
perceptions’’ concludes the results section.
Content-Related Themes
Misperceptions of Children’s Behaviors
A primary theme that emerged from the interviews was
concern that the non-sexual and sexual behaviors of chil-
dren with ASD were misunderstood and stigmatized by
others. The majority of parents (n = 16) were fearful that
their children’s non-sexual behaviors would be miscon-
strued as having sexual content. Parents perceived their
children’s psychological and behavioral functioning asso-
ciated with ASD leading to non-sexual behaviors resulting
from a lack of understanding regarding personal space,
problems with sensory processing and misperceived social
cues. As one mother noted, ‘‘If you have a pattern on your
shirt and he [her son] likes it, he is going to touch it, not
because he wants to touch your breasts but because he
wants to feel the shirt.’’ Parents perceived that others’
limited knowledge of autism may cause their children’s
benign actions to be viewed as sexual expression and
possibly mistaken as deviant. The mother of a mainstrea-
med first grader stated, ‘‘The teacher was very concerned
about my son because he wants to approach children but is
not sure how to, girls in particular. He’ll go over and touch
their hair and want to hug them. It seemed like this teacher
thought he was a sexual offender instead of a kid struggling
with autism.’’ Although parents perceived these and similar
actions as normative developmental behaviors for children
with ASD, they discussed socially acceptable mechanisms
to minimize children’s sensory-related behaviors and to
foster social and emotional reciprocity. ‘‘We work on
social cuing every day through role play and opportunities
with siblings. He doesn’t know social cues and stands too
close to people. He is our little space invader,’’ stated the
mother of an 11 year old. A few parents (n = 5) employed
a range of visual and behavioral techniques to curtail
conduct that might be misinterpreted as sexualized. Among
these included the use of red and green paper (red to
demonstrate stop-private, green, okay-public) for places in
the home to be dressed or undressed in front of others and
gestures for visual cuing to signal inappropriate touching.
679
Other parents expressed a desire to acquire such skills
using techniques already familiar to their child’s learning
style (for example, using applied behavioral analysis).
Parents also recognized their children’s normative sex-
ual behaviors to be both stigmatized and feared. One
mother said, ‘‘I have had an issue with my son who didn’t
understand, he was masturbating. I talked to the school
nurse who was no help. She was embarrassed that a kid
with a disability was doing this and told us to speak with
his psychiatrist or behavior person, basically anyone who
dealt with problem behaviors for autism kids.’’ Moreover,
parents shared that the maturational behaviors their non-
disabled children displayed were viewed as sexually
problematic or inappropriate when exhibited by children
with ASD. Such behaviors included ‘‘playing doctor’’,
undressing with others present, touching one’s genitals and
masturbation. Parents also emphasized that their children’s
sexual behavior was not viewed as a sign of ‘‘normalcy’’
rather an aspect of development to further separate their
child from nondisabled peers. In the words of one mother,
‘‘Even when he grew hair under his arm, got muscles,
instead of rejoicing that he is on track with his develop-
ment, another mom said to me this must be a nightmare. He
would be better not to hit puberty because he might get too
aroused and not know what to do with himself.’’ Parents
were clearly troubled by misperceptions of their children’s
sexual and non-sexual behaviors.
Challenges Discussing Sexuality with Children
and Professionals
Parents expressed a strong desire to communicate with
both their children and professionals about sexuality but
expressed apprehension and concerns regarding such dis-
cussions. The majority of parents (n = 16) stated they
would be comfortable communicating about sexuality with
their children with ASD but questioned their child’s ability
to comprehend the information as a barrier to discussions.
As one father shared, ‘‘My biggest concern-is he getting it
in the right way? I mean he’s never asked any questions,
not even about his erections.’’ Parents explained the
problem of discernment with their children similarly. As
one mother proffered, ‘‘The stakes are much higher with
this population because they can very easily invent an
event. They understand things so differently and not nec-
essarily verbalize how they understand it so that things can
get really off track.’’ The dynamic of parent initiated one-
way communication also caused parents to question their
child’s ability to apply the socio-sexual knowledge and
skills learned. Parents wanted to acquire skills to help teach
their children with ASD information about sexuality and to
appropriately apply this knowledge to their everyday
environments.
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Reluctance to discuss sexuality was also coupled
with the belief that the topic was simply not relevant
for their child. As a father said of his 12 year old son,
‘‘My hands are so full with other things that I’m not
going to anticipate how I am going to handle something
that doesn’t exist just yet.’’ Parents acknowledged their
children’s chronological age being widely disparate
from their child’s emotional maturity. Parents desired
guidance as to when it was appropriate to provide
sexuality education and what topics should be taught, as
some parents (n = 6) found it challenging to address
certain sexuality topics when their child still has
‘‘accidents at night in bed’’ or plays with age-inappro-
priate games. Parents who perceived their children with
ASD as behaviorally immature struggled with commu-
nication about sexuality.
Parents were also anxious that their children may
overgeneralize when information about sexuality is com-
municated. As one mother explained, ‘‘My son tries to
generalize everything. For example, I was telling him that
if he doesn’t brush his teeth they are going to turn yellow
and he associated that with a witch. Then I found him in the
bathroom for over a half hour and I was like have you been
brushing your teeth the whole time. He’s yeah I don’t want
to be a witch. With sexuality I have to be really careful
exactly how each word is stated or who knows what he will
think or do.’’ Some parents shared their unease that sex
education could lead to perseveration or fixation on a topic.
The validity of this concern should not be understated as
stereotyped and repetitive use of language, mannerisms and
behaviors are defining features of ASD. One mother
questioned, ‘‘What if I tell my son it is a penis and for the
next 10 months, his fascination is with his penis instead of
a computer game or train. What if he talks about his penis
all day and to everyone he meets?’’ Other parents worried
about their child’s behavioral reactions to learning about
sexuality. For the seven parents of children with self-
stimulation behaviors, they feared that masturbation may
become a substitute for current behaviors like hand-flap-
ping or rocking.
Such apprehensions have led parents to seek guidance
to acquire additional knowledge about their child’s sex-
ual development and the skills needed to accurately and
appropriately communicate this information to their
children. However, despite the myriad professionals
active in their children’s lives, including special educa-
tors, developmental pediatricians and psychiatrists among
others, parents reported feeling isolated in regards to
receiving information or preparation to address their
child’s sexuality. As one mother said, ‘‘I was in this
little ignorant cocoon and it kinda crept up. Parents need
to know that just because their child does have a sig-
nificant developmental delay doesn’t mean that their
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sexuality is going to be delayed. Because no one ever, I
mean I go to all of the pediatricians, I go to the
developmentalist, and no one said to me this will hap-
pen.’’ Parents desired information from professionals
regarding their children’s normative sexual growth and
development, a noted gap in knowledge for many parents
(n = 11). One father stated, ‘‘Knowing from a doctor or
educator that he was possibly on the same developmental
calendar as many 12 year olds would have helped. Just
because he has autism spectrum, doesn’t mean that
anything else physiologically is going to be off, we have
learned the hard way on our own.’’
Parents portrayed professionals as lacking initiative or
receptivity to addressing children’s sexual maturation
unless an aspect of sexuality presents as a behavioral
problem. One mother mentioned, ‘‘The psychologist
never discussed my child’s changing behavior could be
due to raging hormones or not understanding the changes
in his body, even when I asked if that was possible. She
only wanted to talk about it when he got in trouble for
kissing his piano teacher and trying to touch her breast.’’
Training in sexuality was viewed as a primary need for
professionals serving parents of children with ASD. As
one mother said, ‘‘The experts have an answer for every
situation with my child except the one that could land
him in jail if he handles it wrong. I just wish they would
be trained to ask us the important questions since we
don’t know what questions to ask or to who. Why would
I think my son would get erections or try to kiss girls at
9 when he wasn’t even toilet trained until 6?’’ Parents
repeatedly referenced other parents of children with ASD
as their main source of sexuality information. As one
mother said, ‘‘Teachers and therapists know a lot but
they don’t share information about sex or birth control. It
would be great to get the information they learned in
school, the book knowledge. But it’s even nicer to talk
to moms that have gone through it already.’’ Some
parents (n = 5), however expressed concern about the
accuracy of this information and the applicability of
interventions suggested by ‘‘parent experts.’’
Sexuality Information Communicated to Children
In general, parents reported communication about sexu-
ality with their child. Parent–child communication was
focused on limited themes, their child’s safety and social
acceptance. Among a range of topics two emerged more
frequently, sexual abuse prevention and personal hygiene
issues. All parents interviewed discussed sexual abuse
prevention with their child. Parents repeated that their
primary fear is for their child to be sexually abused.
‘‘Someone is going to take advantage because they don’t
fully understand sexuality like a child their age,’’
J Autism Dev Disord (2012) 42:676–684
asserted one mother. Parents identified numerous reasons
for their children’s vulnerability to sexual abuse includ-
ing an inability to judge other’s negative intentions,
limited communication skills and dependence on multi-
ple caregivers. Four parents noted suspicions about
friend’s or relative’s children with ASD having been
sexually abused by caregivers during the early childhood
years. These parents questioned if children with ASD are
able to provide accurate abuse reports due to their lim-
ited communication skills and underdeveloped vocabu-
lary about body parts.
Many parents (n = 11) were concerned that they have
inadvertently communicated contradictory messages about
sexual abuse prevention to their children. One mother
affirmed, ‘‘For many years we’re teaching our children to
go with everyone and hold everyone’s hand for safety
issues and it’s ok to have someone help you get dressed and
go to the bathroom, to shower you. Now they are older, and
still need personal assistance. I try to tell him when it’s not
ok to pull down your pants and it’s ok for this and not ok
for that but there are too many rules.’’ Parents also worried
that they may not provide the information in a logical way
to their child. As one father concluded, ‘‘I want my child
knowing he has the right if someone were to approach him,
to say no. I have never had a discussion with my son like
this but I have told him generally to stay away from
strangers and not let them touch your private parts. I
wonder if this helped him to understand or confused him
further.’’ Parents desired additional knowledge on sexual
abuse prevention and wanted to enhance their skills for
detecting abuse and their children’s skills for recognizing
and reporting abuse.
Parents also discussed hygiene and grooming with their
children with ASD. Most parents (n = 14) reported chil-
dren’s continuing struggles with personal hygiene due to
sensory processing dysfunction, especially tactile activities
such as wiping, bathing and teeth brushing. As one mother
shared, ‘‘I finally got him to wipe himself thoroughly after
years. I still have to beg him to change his underwear each
day and take a shower. I help him in the shower and wash
his hair. He’s going to be 11 years old.’’ In general, parents
were anxious about aspects of sexuality linked to hygiene
such as menstruation and cleaning after masturbation or
nocturnal emissions. However, some parents (n = 6) dis-
cussed the use of activities related to hygiene to commu-
nicate about sexuality. One mother stated, ‘‘Bath time was
the perfect opportunity to teach the correct names of body
parts and about personal boundaries since I bathed my son
and daughter together.’’ Attention to hygiene enabled
parents to discuss self-esteem, attraction to others and
pursuits towards social acceptance. In general, parents
perceived hygiene as a means to foster children’s self-
awareness and socialization.
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Perceptions of Children’s Future
Parents’ discussions of sexuality tended to be void of topics
focused on forthcoming social and sexual behaviors such as
dating, sexual intercourse, and birth control. Foregoing
such discussions was due partly to the child’s age but most
notably, to an inability to envision their children’s future
including a partner. Collectively, parents expressed the
reflection, ‘‘It’s hard for me to imagine my son ever having
a girlfriend.’’ Several reasons for this belief were identified.
More than half of parents (n = 10) remarked their child
didn’t have a friend, so a date or partner seemed implau-
sible. Based on common experiences with failed attempts
at socialization with peers, parents now focused on their
fear of rejection by children’s potential ‘‘crushes.’’ One
father described, ‘‘He gets crushes; so far he is ultimately
rejected and devastated. The thing is preparing him for
rejection so it doesn’t destroy his self-esteem. Why talk
about sex with him when it will most likely never happen.
It is cruel to get his hopes up.’’ One mother stated, ‘‘Is my
child ever going to get married and have kids-no. That
opportunity was taken away from her the day she was
diagnosed with autism, without her having a choice. She
has discovered [her area] but a partner, nope it is just not in
her future.’’ Despite accounts of their children’s expressed
sexual interest and a wide array of age-appropriate sexual
behaviors, parents believed without an appropriate level of
social functioning, their children would be unable to
achieve romantic or intimate functioning. Other reasons
parents were unable to foresee a partner in their child’s
future included children’s hypersensitivity to smells and
tastes interfering with intimacy and an inability to ‘‘han-
dle’’ social and emotional reciprocal interaction. Percep-
tions of their child’s futures greatly impacted topics
addressed during parent–child communication about
sexuality.
Differences Among Parents’ Perceptions
While parents overwhelmingly agreed on the importance of
and desire for communication about sexuality with youth
with ASD, they disagreed on two particular points. Parents
suggested varying time frames for educating children with
ASD about sexuality and regarded the communication as
either their primary role or a shared role. The majority of
the parents (n = 8) of younger children between the ages
of 6–9 expressed a need for communication to begin during
the later elementary school years, suggesting a focus on
areas such as modesty and body part awareness to be
conveyed to children. However, most parents (n = 6) of
children ages 10–13 believed sexuality education should
begin in the early elementary school years focusing on the
need for sexual health information, puberty and
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masturbation as essential topics for younger children to
learn. They noted disadvantages children face (i.e., exhib-
iting inappropriate sexual behavior, inattention to issues of
privacy and modesty) when sexuality education and social
interaction with same age peers are delayed.
All expressed the belief that parents should be sexuality
educators for children, however, some parents (n = 7)
noted shared responsibility of both medical professionals
and educators to provide sexuality education to children
with ASD. Other parents (n = 6) explicitly expressed
disinterest in their children being educated by professionals
on sexuality. Instead, they highlighted the need for pro-
fessionals to foster gaps in parental knowledge and skills to
enhance communication about sexuality between parents
and their children with ASD. As a parent shared, ‘‘I don’t
want someone on the child life study team educating my
son about masturbation. I have no idea of that person’s
morals, values or skills. I often don’t even agree with what
she wants for my child academically. But, I would like for
them to help me to figure out how to best provide the
information to my son, so he learns it and I know he gets
it.’’
Discussion
The results of the current study highlight the importance of
developing targeted sexual risk reduction programs for
youth with ASD and their families. Similar to the existing
extant empirical literature, the data reported here suggest
children with ASD are at great risk for involvement in risky
sexual behavior and/or sexual victimization. The current
study addresses a gap in the scientific literature in that it
seeks to further understand the sexual risk reduction needs
of ASD youth from a family-based perspective. Limited
attention has been placed on the role of families in
reducing sexual risk behavior and sexual abuse among
children with ASD. In this regard, the study is innovative
and has important public health implications for an
understudied and vulnerable population.
Despite an increasingly large body of literature that
suggests parents can influence important sexual behavior
decisions and outcomes in their children’s lives, scant
research has addressed the potential protective role of
parents for youth with ASD. This is worrisome in that the
findings reported here indicate that parents perceive their
children with ASD as vulnerable to involvement in sexual
risk taking and negative sexual behavior outcomes. Parents
primarily report concerns related to their children with
ASD being sexually abused or demonstrating behaviors
that can be misconstrued as sexually inviting or provoca-
tive. Striking to note is the fact that almost no parental data
discussed youth with ASD as potentially being engaged in
123
J Autism Dev Disord (2012) 42:676–684
normative social or romantic relationships and sexual
behavior. This may be in part due to the fact that the
majority of families sampled for this study had a younger
child with an ASD. However, when parents were probed
about future romantic relationship orientations for their
children with ASD, the majority did not foresee a future
where their child might be appropriately sexually active.
This result was most pronounced in families where there
was more than one child and not all were children with
ASD. In these instances, parents reported differential
expectations regarding the formation of romantic rela-
tionships and sexual behavior. For nondisabled children,
parents envisioned a future where the child was expected to
form developmentally appropriate romantic relationships.
The tendency for parents to perceive romantic relationships
as foreclosed to their children with ASD results in limited
attention to addressing the reproductive and sexual health
needs of this population. This is troublesome in that youths
with ASD may be unprepared to protect themselves from
unintended pregnancies, HIV and other sexually transmit-
ted infections.
Parenting behaviors reflect insufficient effective strate-
gies to foster the sexual and reproductive health and well-
being of their children with ASD. Parent-based sexuality
training programs that rely on evidence-based interventions
such as applied behavioral analysis and social stories
should be developed to enhance parents’ self-efficacy with
communication. Such programs enable parents to imple-
ment skill-based techniques commonly used in educational
settings familiar to their children’s academic and life skills
learning style. Such programs further assist parents to
accurately assess their child’s understanding of sexuality-
related topics communicated. Given parents repeatedly
questioned their child’s level of comprehension regarding
sexuality information imparted, the development of effi-
cacious parent sexuality training programs is a particularly
salient recommendation.
With the proper supports and knowledge, many children
with ASD develop into adolescence and adulthood with the
ability to form and maintain mature and healthy sexual
relationships. All individuals with disabilities have a right
to education about sexuality, sexual and reproductive
health care, and opportunities for socializing and sexual
expression (SIECUS 2011). Many of these rights are
addressed by the ratification of the Convention on the
Rights of Persons with Disabilities in 99 countries (United
Nations Enable 2011), in particular Articles 23 and 25
explicitly discuss sexual and reproductive health and
reproductive rights. Important to note is the global trends
towards increased research and scholarship related to the
sexual and reproductive health needs of individuals with
disabilities. Internationally, there is a growing body of
literature (i.e., Grieveo et al. 2007; Löfgren-Mårtenson
J Autism Dev Disord (2012) 42:676–684
2004) that has examined various aspects of sexuality and
disability. This scholarship has contributed to an increased
understanding of sexuality-related issues and service needs
for adults with disabilities. Despite greater attention to this
area, much remains unaddressed and warrants further
investigation. In this regard, the current study incremen-
tally advances the knowledge base of the field.
Despite the exploratory nature of these data and the
limited sample size, the findings of this paper provide
important implications for future research and applied
interventions designed to improve the sexual and repro-
ductive health of youth with ASD. Several important
applied implications are worthy of further discussion and
reinforcement. Among these is the fact that the majority of
parents participating in the current study indicate a strong
interest and need in hearing from myriad professionals
about how to better communicate with their children with
ASD about issues related to sexual and reproductive health.
Despite this, a review of available materials from numerous
social service and health providers reveals insufficient
availability of materials developed for either parents or
providers to best support greater levels of communication
about the sexual and reproductive health needs of children
with ASD. The demand for resources and individuals with
expertise to address the socio-emotional needs of youth
with ASD, including sexuality, outstrips the supply (Pre-
lock and Vargas 2004). Many providers who work with
children and adolescents with ASD do not have the
knowledge and skills to address the natural changes and
concerns that come with emerging sexual maturity. Too
often, the discussion when it does occur with providers, is
restricted to problematic sexual behaviors exhibited by a
child. Such discussions are reactive versus proactive and
fail to contextualize the normative developmental sexual
needs of children with ASD.
When parents communicate with children with ASD,
often their conversations focus on sexual abuse and
hygiene issues versus the full spectrum of sexual health and
reproductive issues. This is not to say that an important
facet of the dialogue should not include the prevention of
sexual abuse and development of personal hygiene. How-
ever, the conversation cannot conclude here. When physi-
cal maturation occurs at a greater rate than growth of
emotional or cognitive skills, as it does in youth with ASD,
how well adolescents are able to adjust to this change
depends largely on the support and education they receive
from families and providers (Wallis 2000). Both parents
and providers need training to better attend to the unmet
sexual health needs and the dearth of sexuality education
programs for youth with ASD.
In sum, the present study documents that parents want
and require support in addressing sexual behavior with
their children with ASD. Specifically, parents require
683
programs that support their efforts regarding the prevention
of sexual abuse and the incorrect classification of behavior
as sexual. Parental efforts in addressing the sexual and
reproductive health needs of their children with ASD also
need to consider normative sexual behavior resulting from
maturation. The sexual decision making of individuals with
ASD warrants further attention both in regards to research
and to the development of applied prevention programs.
Family-based programs that target children with ASD with
appropriate knowledge and skills for navigating normative
sexual behavior associated with maturation and transition
to adulthood are feasible and sorely needed.
Acknowledgments This research was supported by a grant from the
Silberman Fund awarded to Michelle S. Ballan.
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