Sexuality and Disability, Vol. 18, No.

2, 2000

Sexuality and Adolescents with Autism

Rebecca Koller1,2

Appropriate education in sexuality is critical to the development of a person’s

positive self-esteem. The development of a healthy self-image may overcome
potential feelings of depression and loneliness for the person with autism. This
paper addresses the need for and challenges to providing sexuality education to
individuals with autism. It summarizes teaching methods and approaches which
have proven to be successful with this population.
KEY WORDS: sexuality education; adolescence; self-pleasuring; sexual abuse.

Sexuality encompasses more than just sexual behavior. It includes self-

image, emotions, values, attitudes, beliefs, behaviors, relationships, etc. Our
view of sexuality changes constantly in response to interactions, experiences,
and formal and informal education. A task force of leading health, education,
and sexuality professionals researching sex education for all children deter-
mined: (a) nine of ten parents favored sex education, (b) twenty-three states
required sex education, (c) thirteen other states encouraged its teaching, (d)
over ninety national organizations believed that all children and youth should
have sex education, yet (e) only 5% of children in America received sex educa-
tion (1).
It is reported that 20% to 25% of children without disabilities are sexually
abused, and estimated that children with disabilities will experience signifi-
cantly higher percentages of sexual abuse (2). Although positive sexuality edu-
cation is important for any population, it should be a priority for people with
disabilities.
Unfortunately, incorrect attitudes regarding sexuality and people with de-
velopmental disabilities may interfere with sexuality education for this popula-
1
University of Utah Department of Special Education, Salt Lake City, Utah.
2
Address correspondence to Rebecca A. Koller, M.Ed., 1698 North 725 West, Woods Cross, UT
84087.
125

0146-1044/00/0600-0125$18.00/0 䊚 2000 Human Sciences Press, Inc.

126 Koller

tion. Sexuality and people with developmental disabilities has been identified as
a “problem, because it is not an issue, or is an issue, because it is seen as a
problem” (3). Individuals with developmental disabilities, including autism and/
or mental retardation, face barriers to expressing their sexuality. Barriers in-
clude “social myths, insufficient knowledge and training opportunities, personal
discomfort, and limited access to available and appropriate educational re-
sources” (4). Such barriers may result in a lack of guidance, opportunity, emo-
tional support, education, or acknowledgment of sexuality by caregivers.
Literature on sexuality among individuals with autism is sparse in compar-
ison to information regarding sexuality and people with mental retardation
without autism (5,6,7,8). The need to understand individuals with autism, espe-
cially as they move through adolescence into adulthood, has increased recently
due to the high percentage of adolescents and adults with autism who are expe-
riencing greater opportunities in inclusive educational and community settings.
Adolescents and young adults with autism may have already formed un-
healthy opinions and views about sexuality which affect their self-esteem and
interactions with others (9,10,11). Informal education about sexuality occurs
constantly through interactions with and observations of others and through the
media. A sense of belonging is critical especially during the transition period of
adolescence since an awareness in differences between individuals with and
without autism may occur as inclusion improves (12). This realization may lead
to depression and loneliness for the person with autism.
All individuals have the right to instruction regarding sexuality, regardless
of their level of functioning. The purposes of this paper are: (1) to discuss
issues surrounding sexuality education and individuals with autism, and (2) to
describe effective principles and approaches for teaching sexuality found in the
literature.

ISSUES OF SEXUALITY EDUCATION

Education for caregivers of individuals with autism regarding issues of

adolescence and self-pleasuring may help alleviate the anxiety of individuals
with autism caused by misinformation or the absence of information. Such edu-
cation, along with information regarding sexual abuse, should be included in a
proactive approach to sexuality training for individuals with autism.

Adolescence

Adolescence may be the most critical of developmental stages which im-

pact the social, physical, and emotional aspects of one’s life. Individuals with
Sexuality and Autism 127

autism typically mature physically and sexually according to normal develop-

mental stages (13,14,15). However, a child with autism can develop normally in
some areas and have difficulties in social understanding and interactions (13).
This inconsistent development can be confusing to both the child and care-
givers. Parents and caregivers often express concern over the growing sexual
drive since it is generally:
not accompanied by a corresponding growth in the field of social ‘know-how’ which
often leads to embarrassing behavior. This seems to be particularly true of moderately
mentally retarded adolescent boys with autism, who may expose themselves, masturbate
in public and touch other people’s genital regions. Such behavior can, of course, be very
embarrassing to those confronted, including parents and siblings (16).

Classic characteristics of autism, such as failure to develop language or

other forms of social communication, continue through adolescence. Though
the literature reports that adolescents with autism may improve in some skill
areas, “their rate of improvement is not sufficient to accommodate the increas-
ing demands placed upon them as they grow older” (7).
Social difficulties do not always mean that young adults do not wish to
pursue social relationships, nor do they indicate a lack of emotion. The prob-
lem, in fact, may lie in the difficulty of those with autism to acquire and under-
stand the subtle rules of social interaction, and to develop empathy with others
(17,18). Social skills training during this time should address difficulties with
“empathy, rigidity, and social distance” (7).
Aggressive episodes occurring during adolescence may be motivated by an
inability to understand environmental and social expectations. For example, one
man with autism characteristically described a feeling of constant “confusion
and terror” beginning at the time of adolescence which resulted in anxiety and
aggression (7). Behavior management techniques should be modified with the
change in increased physical stature of the adolescent with autism. Physical
management techniques successful with children may no longer be physically
possible or emotionally respectful.
Changes within the central nervous system may also occur during adolescence
(9). Studies show that youth with autism between 11–14 years of age are at greater
risk of developing seizures. One-fourth to one-third of children with autism and an
IQ lower than 70 develop seizures for the first time during this time period (7).
Education for caregivers and the individual with autism concerning the
physical changes associated with puberty need to occur shortly before or at its
onset depending on the person’s need and level of understanding. Caregivers
seem especially anxious with the onset of menstruation in the individual with
autism and often seek medical intervention to suppress or eliminate it alto-
gether. Hormonal suppression is often sought by caregivers for irregular or
painful menstrual cycles, cyclical aggression, or for the prevention of preg-
nancy. Research and experience demonstrate, however, that girls with autism
128 Koller

generally accept the onset of menstruation in a matter of fact way and rarely
need medication for control of menses (16).

Self-Pleasuring

The Sex Information and Education Council of the United States

(SIECUS) states that “sexual self-pleasuring or masturbation is a natural part of
sexual behavior for individuals of all ages” (19). Because self-pleasuring is a
common occurrence among people with autism, it should be addressed in sexu-
ality training (5). Masturbation in adolescent boys with autism may be accentu-
ated due to “the lack of other outlets for sexual tension and a predisposition for
self-stimulating behaviors” (20). Realistically, masturbation may be the only
means of appropriate sexual release for those with autism, but is likely com-
pleted in an inappropriate or unsafe fashion (2).
Haracopos (1995) found that in a study of 81 people with autism ranging
in age from 16 to 40, 74% demonstrated definite signs of sexual behavior either
in the form of masturbation or of sexual behavior towards others. Twenty-nine
of the eighty-one engaged in masturbation in public areas, and thirty-seven
individuals used objects in connection with masturbation. This study identified
inappropriate sexual behavior to be the result of social and emotional imma-
turity rather than a result of sexual deviance (5).
Much of the obsessional ritual behavior of people with autism may be a
replacement activity for ineffective masturbation (19). Harmful or inappropriate
masturbation may be caused by situations such as: (a) lack of structured routine
(b) unresolved sexual problems, (c) punitive attitudes by caregivers, (d) lack of
education, (e) lack of opportunity for privacy, and/or (f) the use of medications
which suppress libido. Excessive masturbation has also been linked to a lack of
tactile stimulation (21).
The literature generally promotes an accepting approach to masturbation
training for individuals with autism (2,5,19,22,23). Caregivers will want to ad-
dress masturbation in a matter-of-fact, individualized manner. It is suggested
that instructors teach appropriate time and place and suggest the following in-
terventions when an adult with autism masturbates in public:

1. Interrupt the behavior,

2. Remind the person of the appropriate time and place for the behavior,
3. Redirect the person to another activity or to an activity that requires the
use of both hands,
4. Redirect the person to an activity that involves intense focus or high
amounts of physical movement,
5. Redirect the person to an appropriate place to have privacy, such as a
bathroom, shower, or private bedroom,
Sexuality and Autism 129

6. Reinforce staying in assigned areas and taking breaks as scheduled, to

decrease the likelihood that excessive breaks or trips to the bathroom
will occur, and
7. Provide visual evidence of scheduled breaks or private leisure time, so
the person can anticipate and plan for personal needs (24).

Sexual Abuse

Education regarding sexual abuse should be a component of responsible

sexuality education. Increased vulnerability among children with disabilities re-
lates to their inability to understand or communicate what has happened or what
will happen (3). Two of the most important issues to address in the area of
social-sexual relationships are how to teach appropriate behavior and how to
balance risk and opportunity (15). Walcott (1997) reports that “without proper
education in the areas of sex, health, and physical education, people with mod-
erate and severe disabilities risk exposure to sexual exploitation, poor health,
abuse, and neglect” (25).
Hingsburger (1995) submits that caregivers have inadvertently created a
“Prison of Protection” for individuals with disabilities through overprotection.
Protection from sexual information, relationships, decision-making, and society
have limited and, in many cases, harmed individuals with disabilities. Instead,
the person should be seen capable of protecting themselves given proper sup-
port and education. Hingsburger describes this support model as “The Ring of
Safety” which includes privacy awareness, the ability to non-comply, someone
who listens, understanding of personal rights, healthy self-concept and self-
confidence, options for healthy sexuality, and sex education (26).

EFFECTIVE PRINCIPLES AND APPROACHES

FOR TEACHING SEXUALITY

This section will address methods that have proven successful in teaching
sexuality skills to persons with autism. Before teaching social/sexual skills,
however, caregivers will need to assess the person’s preferences, strengths, and
needs in order to develop an individualized approach. A team approach is also
recommended to determine the extent to which the individual can participate in
making informed choices relating to social and sexual behaviors.

Sexuality Curriculum

Three programs and philosophies of sex education for individuals with

autism have been suggested in the literature. A review of these viewpoints
130 Koller

highlights specific challenges facing guardians and professionals while offering

possible options for consideration.
First, Devereux Centers for children and adults with autism in Massa-
chusetts, New York, New Jersey, Pennsylvania, Florida, Texas, and California
follow two fundamental precepts before beginning sexuality instruction:

1. Parents are the best sex educators. If, for whatever reason, parents are
unable to do this task, teachers and other staff attempt to fill this role,
and
2. It is normal and natural for every person with a body to express their
sexuality regardless of their handicap condition or functional ability
level. Further, it is normal and natural to express this sexuality within
the confines of the individual’s social contacts, whomever that may be
(22).

Instruction should therefore include all or parts of the following topics

depending upon individual need: body parts, reproduction, birth control, sexual
health, the sexual life cycle from birth to death, male and female social/sexual
behavior, dating, marriage, parenting, establishing relationships, abuse aware-
ness, boundary issues, self-esteem, and assertiveness skills training. Teachers
should assess the client’s ability to use abstract thinking in order to determine if
audio-visual material and discussions can be used. If not, appropriate, immedi-
ate, situational instruction is used (22).
Second, Benhaven is a day and residential school community in New Ha-
ven, Connecticut which offers individualized services for children and adults
with autism. Melone and Lettick (1985) explain that Benhaven provides sexu-
ality training based on the following policy decisions:

1. We must teach students behavior that will be socially acceptable and

appropriate in adulthood as well as in childhood,
2. There is to be no disapproval of masturbation, since it is probably the
only kind of sexual satisfaction that will be available to our students
during their lifetime. Students must be taught, however, that masturba-
tion is unacceptable behavior in public, and must be informed as to
where it is specifically allowable, and
3. We cannot encourage behavior that will lead to frustration and disap-
pointment for the student. Therefore we do not encourage what in nor-
mal adolescents would be predating behavior with staff or other stu-
dents. Romance must be put aside for more realistic social encounters
geared to expectations of friendly sharing of activities (23).

Potential students are individually assessed before sexuality training to de-

termine their language ability, social functioning level, behavior, and emotional
Sexuality and Autism 131

maturity. This is not a program for individuals who exhibit or will exhibit high
social development, nor is it a program for those who exhibit low social devel-
opment. Other individualized teaching arrangements need to take place for
those not meeting the qualifications of this group-learning setting. Qualified
students are taught identification of body parts, menstruation, masturbation,
physical examinations, personal hygiene, and social behavior. Topics felt to be
“beyond the scope of our students, such as dating, marriage, birth control, and
childbirth” were omitted (23).
Finally, Haracopos (1995) outlined the following general policies for ad-
dressing sexuality for children and young adults with autism in Denmark:

1. People with autism should have the right and possibility to have a sex-
ual life in accordance with their desires, needs and what they can man-
age,
2. People with autism have the right to receive guidance and support with
regard to unresolved sexual problem(s),
3. The learning of appropriate social behavior with regard to sexuality
should occur in agreement with the social rules and norms of the per-
son’s place of residence,
4. The type of guidance should first be dependent on how demanding and
obvious the sexual problem is for the person and the environment,
5. Sexuality should be viewed in a global context so that sexual instruc-
tion and training do not consist only of the person learning how to
masturbate to orgasm, but also enhancing the person’s awareness of
self, and supporting him or her in understanding the physical and emo-
tional changes in relation to the sexual desire, and
6. When an autistic person directs his or her sexual interest to another
person, one should decide how far to go in supporting such a contact,
since to experience sexuality with another person consists of showing
tenderness, care, and empathy, one must recognize that the majority of
people with autism have extreme difficulty in relating to other people
(5).

Haracopos (1995) further advocates for systematic individualized instruc-

tion which has been approved by a professional team before implementation.
He also submits that instruction should be approved by the person with autism
by verbal and/or non-verbal reactions (5).
The goal of sexuality education should be to protect the individual from
sexual exploitation, teach healthy sex habits, and increase self-esteem through
systematic, individualized approaches. Education needs to be provided with
consistency and common-sense. It will need to be on-going, and will need to
constantly reinforce appropriate behaviors.
132 Koller

Teaching Strategies

“Being autistic does not mean being unable to learn” (27). Teaching
methods need to be adapted, however, to accommodate an individual’s learning
style, interest, and need. The student’s values and motives must also be taken
into consideration since “there is invariably a personality constructed over the
handicap” (28). An emphasis should be placed on facilitating “personally mean-
ingful experiences” rather than on teaching skills simply because they are “nor-
mal” (29).
The learning environment should be arranged in advance in order to mini-
mize the potential for stress and possible behavioral difficulties. The individual
with autism should not be exposed to situations longer than can be tolerated and
rules should be emphasized before engaging in social encounters, e.g. turn-
taking and proximity to others (17). Periods of regularly scheduled vigorous
exercise might be provided to help reduce stress, anxiety, and the potential of
problematic behavior (30).
Generally, individualized instruction should: (a) be concrete rather than
abstract, (b) be brief, specific, and clear, (c) be visual, (d) utilize imitation and
role-play, (e) be taught in real-life settings, and (f) be repeated frequently (19).
Several effective methods for teaching social skills to individuals with autism
include: (a) video taping real or acted situations for playback and discussion,
(b) individual counseling coupled with social skills training, (c) peer-initiated
interactions, and (d) developing books that depict social situations
(18,24,30,31,32,34).
Increasing the predictability and organization of events and interactions
may also help individuals with autism develop flexibility and independence.
Quill (1995) describes four environmental strategies which enhance a sense of
their world:

(1) Temporal supports used to organize sequences of time such as sched-

ules, completion guidelines, waiting supports, and strategies for ac-
cepting changes,
(2) Procedural supports used to clarify the relationship between steps of
an activity or relationships between objects and people which can in-
clude clarification about routines, personal possessions, or privacy,
(3) Spatial supports used to provide specific information regarding the or-
ganization of the environment which include information about the
location of objects, and
(4) Assertion supports used to help the individual initiate and exert control
such as in making choices and maintaining self-control (30).
Sexuality and Autism 133

Fostering Opportunities

Individuals with autism “must be exposed to everyday situations and re-

sponsibilities that will challenge, and sometimes exceed, their capabilities”
(12). In addition to fostering rules of social interaction, it is also valuable to
encourage the individual with autism to participate in sports, games, or orga-
nized clubs which are of interest to the person (18). Quill (1995) suggests
directing and broadening fixations into useful activities, and motivating interac-
tions with others (30).

CONCLUSION

Sexuality education for individuals with developmental disabilities, and

especially autism, is an emotional issue. These emotions often create barriers
for the very people that caregivers want to protect. Those wishing to provide
sexuality education for this population must first examine their own attitudes,
values, and motives. Mesibov (1985) cautions that “because most autistic peo-
ple will not form our society’s traditional sexual unions consisting of marriage
and a family, we must evaluate our feelings about possible alternatives, weigh-
ing the needs of autistic people for appropriate sexual outlets against the values
and morals of society” (7).
The question for caregivers then, is not if sexuality education can or
should be provided for individuals with autism, but how will it be offered.
Though the literature concerning sexuality education for people with autism is
relatively small, there is growing evidence that an individual with autism can
learn and benefit from instruction that is respectful of the person and their
autism.

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