Sexual Behavior in Adults with Autism
Sexual Behavior in Adults with Autism
2, 1997
A survey of the sexual behavior of 89 adults with autism living in group homes
in North Carolina found that the majority of individuals were engaging in some
form of sexual behavior. Masturbation was the most common sexual behavior.
However, person-oriented sexual behaviors with obvious signs of arousal were
also present in one third of the sample. The relationship between sexual
behavior and demographic variables and other types of behaviors is explored.
Information regarding group home sexuality policies and procedures are
described.
The importance of sexuality in the lives of people with autism has been
the subject of debate (Elgar, 1985; Money, 1985; Torisky & Torisky,
1985). The controversy has centered largely around how the social defi-
cits of individuals with autism affect their interest in sexuality and what
type of sex education is needed. While professionals try to determine
the importance of sex education for the entire population of people with
autism, parents (DeMyer, 1979) have indicated that the sexual behavior
of their offspring is a major concern to them. Also, many residential
caregivers have expressed concern about the sexuality of their residents
(Mesibov, 1983).
One reason for the debate about the importance of sexual behavior
in the lives of people with autism is the limited empirical data regarding
the nature and frequency of sexual behaviors in this population. Ousley
and Mesibov (1991) compared the sexual interest, knowledge, and experi-
ence of high-functioning men and women with autism to that of individuals
with mild to moderate mental retardation without autism. The results in-
1 Address
all correspondence to Mary E. Van Bourgondien, Division TEACCH, CB# 7180,
Medical School Wing E, Chapel Hill, North Carolina 27599-7180.
113
0162-3257W/0400-0113S12.50/0 © 1997 Plenum Publishing Corporation
114 Van Bourgondien, Reicble, and Palmer
dicated that many adults with autism were interested in sexuality, but their
experience was limited. Sexual experience, especially among males, was pri-
marily masturbation. A small percentage of females had engaged in sexual
activity beyond kissing and hugging.
In a survey of 100 parents of children with autism ranging in age 9
to 38 years, Ruble and Dalrymble (1993) found that individuals with
autism engaged in a wide variety of sexual behaviors described by their
parents as inappropriate. Sixty-five percent of the sample were reported
to touch their private parts in public, 23% masturbate in public, 18%
touched the opposite sex inappropriately, and 14% masturbated with un-
usual objects.
Haracopos and Pedersen (1992) have completed the most extensive
survey of the sexual behavior of adolescents and adults with autism. In a
nationwide survey in Denmark, they collected extensive data on 87 indi-
viduals with autism (57 men and 24 women) who lived in residential fa-
cilities. The results indicated that 68% of the adults were reported to
masturbate with 60% of those who did masturbate achieving orgasm. Mas-
turbation in public was reported in 53% of the sample, and 31% reportedly
used objects to masturbate.
The survey also included information regarding the person-oriented
sexual behavior of the sample. These behaviors were categorized as asso-
ciated or not associated with definite signs of physical arousal. Person-ori-
ented sexual behaviors with definite signs of physical arousal such as
touching others' genitals or getting others to touch ones own genitals,
touching other parts of the body, or attempting at or succeeding in sexual
intercourse were reported in 42% of the sample. Other person-oriented
sexual behaviors such as hugging, hand-holding, and kissing that did not
include definite signs of sexual excitement in the subjects occurred in 28%
of the subjects. Based on their data, Haracopos and Pedersen (1992)
strongly suggested that people with autism are interested in and are en-
gaging in sexual behavior and that systematic approaches to educating them
regarding the appropriate expression of these feelings are needed.
The limited research suggests that sexuality may be a more important
issue for individuals with autism than has been previously thought (Elgar,
1985). To determine the generalizability of Haracopos and Pedersen's
(1992) findings to other cultures, it is important to replicate this study in
other countries.
The purpose of the present study was to survey community-based resi-
dential programs in North Carolina to determine the degree to which the
residents with autism engaged in sexual behavior, and to investigate the
sexual policies and training programs of group homes.
Sexual Behavior in Adults with Autism 115
METHOD
Sample
The participants included 72 males and 17 females, their mean age
was 28 years, with a range of 16 to 59 years. Twenty-six were African Ameri-
can or another minority and 63 were white. The subjects represented all
levels of autism and mental retardation: 26% were in the mild range of
autism, 23% in the moderate range, and 51% in the severe range. The
cognitive levels were 18% in the mild range of retardation, 22% in the
moderate range, and 60% in the severe range of mental retardation. Sixty
(67%) of the subjects had verbal language and 29 (33%) were nonverbal.
Of the subjects 22 (25%) were not taking any medications at the time
of the survey. Of the 75% that were taking medications, 39 (43%) were
taking medication to control behaviors, 15 were taking seizure control
medications, and 42 were taking medications for other health reasons. Fifty
individuals were taking medications for more than one reason. The per-
centages of individuals taking behavior control medications was comparable
to the results of a recent statewide survey. In a study of children and adults
with autism in North Carolina, Aman, Van Bourgondien, Wolford, and Sar-
phare (1995) found that 43% of the subjects over 20 years of age were
taking one or more psychotropic medications.
The majority of subjects (72) lived in Intermediate Care Facilities for
the Mentally Retarded (ICF-MR), 15 individuals lived in less restrictive
group settings called Developmental Disabled Adult (DDA) homes, and 2
subjects lived in supervised apartments programs. Of the sample 77 (90%)
were judged legally incompetent and had legal guardians.
Procedures
A survey was sent to 35 group homes in North Carolina that serve ex-
clusively adolescents or adults with autism. In addition, 107 homes that serve
adults with developmental disabilities which may have included residents with
autism were also sent questionnaires. These lists of group homes were ac-
quired from the Autism Society of North Carolina and the state listing com-
piled by the Department of Human Resources in North Carolina.
Of the 35 homes for residents with autism surveyed, 23 responded re-
sulting in a response rate of 66%. Of these homes 18 completed question-
naires for a total of 80 questionnaires; 5 homes declined to participate
because of the personal nature of the questions being asked.
Of the 107 homes for the developmentally disabled contacted, 31 re-
sponded. Of those responding, 21 reported that they did not have a resident
116 Van Boiugondien, Heicble, and Palmer
with autism and 1 declined to participate for other reasons. In North Caro-
lina, most of the homes designed for individuals with mental retardation are
not able to serve individuals with autism. If one assumes that the percentage
of nonresponding homes that do not have an client with autism is at least as
high as the responding group, then the corrected return rate of these homes
is quite high. There were 9 questionnaires returned by these homes.
Measures
separately at a later date to all homes, but only this subset responded to
this second mailing. The ABC is a scale designed for rating the inappro-
priate and maladaptive behaviors of individuals with mental retardation in
residential settings. The ABC consists of five subscales derived empirically
through factor analysis: Factor 1. Irritability, Agitation, Crying (15 items);
Factor 2. Lethargy, Social Withdrawal (16 items); Factor 3. Stereotypic Be-
havior (7 items); Factor 4. Inappropriate Speech (4 items). The frequency
of occurrence of each item is rated by the individual's primary residential
caregiver. The internal consistency of the ABC is high with mean alpha of
.90 with the U.S. standardization sample. Test-retest correlations also are
high, ranging from .96-.9S for the subscales. The validity of the ABC also
is well established (Arnan & Singh, 1986).
Analysis
RESULTS
Table I. Masturbation
No. who
Group n masturbate % of total
Men 72 54 75
Women 17 4 24
Total 89 58 68
118 Van Bourgondien, ReicMe, and Palmer
more difficult for the staff members to rate their levels of arousal as much
of the data was missing. Staff members reported that 16 subjects exhibited
signs of frustration (Table II) when they were not able to masturbate to
orgasm (28% of those reported to masturbate). The signs of frustration
reported by staff members included indicators such as anxiety, agitation,
or aggression toward self or others when their masturbation was interrupted
as well as sounds of frustration and repeated attempts to go to the bedroom
or bathroom.
According to caregiver's report, masturbation occurred in the clients'
bedrooms (54 subjects), in the bathroom (18 subjects), or in other locations
within the residential setting (17 subjects). Masturbation rarely occurred
outside of the group home; 11 subjects reportedly masturbated at the day
program and 4 masturbated in the community.
Caregivers reported that 14 (24%) of the subjects who masturbated
used objects (Table III) to directly stimulate their genitals during mastur-
bation. A wide variety of objects were used including jars of condiments,
pillows, trash bags, eggs, magazines, books, stuffed animals, and blankets.
Caregivers reported injuries from the use of objects in only two instances.
Table VIH. Number of Group Homes (Out of 14) Whose Policies Permit Interpersonal
Sexual Behaviors
Between residents Between residents
Between residents: and member of and staff members:
Opposite Sex/Same community: Opposite Opposite Sex/Same
Sexual behavior Sex Sex/Same Sex Sex
Holding hands 12/5 10/4 2/2
Hugging 8/6 7/5 2/3
Kissing 8/2 7/3 0/0
Fondling genitals 3/2 4/2 0/0
Intercourse 2/1 3/1 0/0
DISCUSSION
The results of this study are consistent with the findings of Haracopos
and Pedersen (1992), and indicate that the majority of individuals with
autism in residential settings were engaging in a variety of sexual behavior.
The most common sexual behavior was masturbation. However, one third
of the sample engaged in person-oriented sexual behaviors with obvious
signs of sexual arousal. These person-centered behaviors generally included
touching and holding hands with some kissing. Known attempts at sexual
intercourse were rare.
Unlike the Haracopos and Pedersen study, the majority of the sexual
behaviors in this study reportedly took place in the privacy of the individ-
ual's bedroom, bathroom, or home. Few sexual behaviors were reported to
occur in community settings. To what to attribute this finding is unclear.
Perhaps it relates to the degree of staff supervision in community settings.
Although the objects used in masturbation were somewhat unusual, this
sample did not report a high incidence of the use of objects to masturbate.
The relationship of verbal language to certain sexual behaviors sug-
gested that individuals with more language were more successful in mas-
turbating to orgasm and less likely to be observed being aroused by
person-centered activities. Perhaps the language capability made them
more aware of the goal of masturbation. Increased social awareness
through the increased verbal skills could also lead to a lower frequency of
sexual behaviors in presence of others. In addition, the successful mastur-
bation practices of verbal individuals may be satisfying their sexual needs.
Another finding of interest was the relationship between behavior prob-
lems as measured by the Aberrant Behavior Checklist and sexual behaviors
in the subsample. For some individuals with autism, masturbation may be
another form of stereotypic behavior as individuals in this subsample who
masturbated were significantly more likely to engage in stereotypic behaviors.
The lack of a relationship between irritability, agitation, and aggressive be-
havior (Factor 1 on the Aberrant Behavior Checklist) and masturbation,
reaching orgasm, or person-centered sexual behavior is also important to
note. Anecdotally, many caregivers hypothesize that individuals who are not
getting their sexual needs met are likely to be more irritable and more ag-
gressive. The results of this study do not support this hypothesis.
The results indicate that person-oriented sexual behaviors were more
prevalent in individuals who were taking psychotropic medications for be-
havior control. One possible explanation is that individuals who are given
behavior control medications are more impulsive overall in their behaviors
including their sexual behaviors toward others. Although it is possible that
the medications may be increasing the sexual arousal of these individuals,
124 Van Bourgondien, Reidile, and Palmer
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