For many of us the topics of sexuality and mental retardation are surrounded with ignorance, confusion, and often negative emotional overtones. The fact that one journal's recent attempt to interface pediatrics and special education failed to mention sexuality is only one example.1 Furthermore, our sex-accepting and sexrejecting society makes the establishment of any reasonable position or information base fairly difficult for even the most rational. Much the same can be said for our improving, but often irrational attitudes toward those who are different or misunderstood, in this case the mentally retarded adolescent.2 In this article we will examine what we know about this subject and provide practical guidelines and anecdotes. We will emphasize the concepts of time and place or etiquette instead of the more controversial issues of morality or mental health.
DISCUSSIONS OF KEY TERMS
As with most of us, sexuality (gender plus role plus feelings) seems to be an integral part of the mentally retarded adolescent's personality and in many ways important to his or her happiness. However, children, in spite of being born with erections and lubricating vaginas, are more sensual than sexual, relatively few finding sexual response (in the adult sense) until around puberty.1 Indeed, historically, much of the problem we have experienced concerning sensual and sexual expression at all ages has been their unnecessary equation with reproduction. Another historical problem has been the incredible connection of masturbation and other forms of stimulation with mental illness, retardation and other undesirable consequences.4
Today there are three rather clear-cut philosophies concerning sexuality, sex education and counseling to be considered.4 The first, or traditional, holds that any sexual behavior that is not explicitly for procreation should be eliminated. This position often is held strenuously for the mentally retarded adolescent, who according to this philosophy should neither reproduce nor engage in any sexual stimulation which is viewed as evil. The second philosophy tends to tolerate (and perhaps accept and accommodate) sexuality. This position has become increasingly popular, especially with recent concerns for the rights of children and other special group members (e.g., The International Year of the Handicapped Child, The International Symposium on Childhood and Sexuality, etc.). Here, control and responsibility, with respect to social context or time and place is sought. As with any right, sexual expression must be viewed according to its effects upon the rest of the world.5 "Believers in this philosophy often start out by more or less reluctantly tolerating the inevitable, but often move on to more accepting positions ..." that sexuality of the mentally retarded adolescent "...is a reality to be dealt with rationally, knowledgeably and humanistically."4 The third philosophy suggests the cultivation of sexual gratification as a major life resource, much as one might encourage and teach tennis or other forms of recreation. This might include explicit teaching of sexually satisfying and individually appropriate techniques, which may become one of the few sources of satisfaction for many mentally retarded individuals. In fact, affection and pleasure are often the ignored aspects of sex counseling, although one of the primary reasons for sexual behavior and perhaps a vital aspect of human development (e.g., Montague and Prescott). As previously stated, this may be a vestige of the traditional view. Needless to say, this third position, cultivation of sexual enjoyment, is not likely to bea majority view. However, it is important to realize that some individuals and societies practice it as a norm without apparent ill effect and evidently with some benefit.6
Incidentally, we would like to suggest caution in using the term "normal," because unless it is defined carefully its meaning can be used Jn several contexts, such as moral, statistical, subjective, cultural, or clinical.4 This may, therefore, confuse the entire issue. The important question is "What are the consequences of the behavior," not whether it conforms to some definition of "normality."
The term mental retardation itself is also suspect because it can refer to: "(a) underdeveloped or damaged brain cells that permanently limit cognitive functioning; (b) a lack of opportunity or ability to learn middle-class verbal and other skills; or (c) a developmental problem of neuromotor perceptual organization."4 Generally speaking, we can expect that anyone labeled mentally retarded has performed substantially below average on some standardized test. It may also be wise to anticipate a developmental delay of social, intellectual, and/ or physical skills corresponding to the degree of handicap or related lack of experience. However, that may be all we can speculate without dealing with the individual! This also applies to the individual's sexuality. We can, unfortunately, expect that many "normal" people will assume that the mentally retarded person is most typical when engaged in undesirable, inferior or even immoral behavior.7 Such beliefs undoubtedly affect attitudes and behavior toward the retarded. Being aware of this while avoiding assumptions may be the best plan.
In practice, it is also wise to consider our teaching/ counseling techniques and gear them to the experience and ability level of the individual. Concrete, multisensory instruction which encourages active participation by the learner (e.g., role playing and followup, etc.) will enhance prospective success. Language is also important. One psychologist was given a book and told to read it to some adolescent girls. The girls listened patiently and then one asked, "Miss _____ , are you teaching us about f - ing?"
THE MENTALLY RETARDED ADOLESCENTS SEXUALITY: PUTTING IT TOGETHER
Obviously, the mentally retarded adolescent is a sexual being, whose reproductive ability, sexual interests, and sexual activity range from high to low, "just like the rest of the population."4 Developmental tasks, including their sequence, are approximately the same for all individuals, but each can be expected to develop at his or her own individual and uneven rate.8 Onset of secondary sex characteristics and such milestones as menstruation and nocturnal emissions vary considerably. For example, females with Down's Syndrome average first menses is I8 years four months, which is considerably later than the general average. The individual, the parent, and the pediatrician must be prepared for such events both earlier and later and expect that sexual development will be essentially within statistically normal ranges.4
Clearly, it is important to avoid assumptions and generalizations and instead deal with each individual's behavior and interests. We remember an adolescent who was apparently unaware of his genitals and the pleasure they might produce, unless they were visible. His mother, who tried to discourage this discovery, carefully kept a towel in his lap while she bathed him. At the opposite extreme were the young man who would delightfully focus his somewhat repetitive verbal attention on any female present, and the young lady who unabashedly tried to "depant" her young, male worker.
It may also be expected that many mildly mentally retarded adolescents will be fairly well in tune with current adolescent or préadolescent fads. However, because of varying intellectual and social skill lags and perhaps lack of opportunities to participate in all the preparatory stages, the normally difficult transition into adolescence may be especially uneven and anxiety provoking.9 In addition, they may simply not have the same opportunities or abilities to learn about sex (correct or not) from books, observation, parents, peers or schools. Neither are they able to compare facts or censor out the absurd.8"" Specific teaching may be required if adequate information and appropriate behaviors are to be expected.12
Finally, the mentally retarded adolescent, like other adolescents, will not only tend to be interested in some sort of sexual behavior for its potential sensual gratification, but she/he often will experience greater difficulty in finding ways of expressing interests that are considered acceptable, moral or legal to our society.
Typically, the retarded, being more closely supervised and scrutinized and having less privacy than other persons, are more likely to manifest behavior which, because it is visible, is regarded as a symptom of retardation rather than of the goldfish-in-a-bowl circumstances in which the retarded commonly live.13
Primary responsibility for sex education belongs to the parent. However, because of a lack of training and the "nature" of the subject matter the pediatrician should be ready to assume a supporting role. Egyeda and Bentley9 found that parents of mentally retarded adolescents often underestimated their child's abilities and had difficulty thinking of them as sexual beings. Conversely, we should not assume or underestimate the parent's actual or potential knowledge or involvement. However, like many parents, they may also have difficulty with the language of sex. Further complications may occur if the parent is required to simplify, repeat, demonstrate, and/or role play sex-related concepts. Most parents do not expect to teach social interaction skills, but this may be required if the mentally retarded are to be successful in these areas. If dating is allowed (an individual decision), teaching and role playing of appropriate responses and behaviors should be considered. Also of importance is learning how to appropriately show affection and love.12 Like many adolescents, they may overdo generosity, deal in extremes, be insensitive to the feelings of others or allow themselves to be taken advantage of or abused."
SEX EDUCATION AND COUNSELING
Since there does not seem to be a high correlation between sex IQ and general IQ, and since most of us are deficient when it comes to sexual matters, we believe that most people benefit from sex education and/or counseling.13 Furthermore, contrary to some absurd suggestions, there is no evidence of stimulation of inappropriate behaviors by the presentation of sex information. 2
QUESTIONS AND ANSWERS ABOUT COMMON INDIVIDUAL PARENTAL CONCERNS AND DILEMMAS'
Question: How important is it for the mentally retarded adolescent to conform to traditional gender appropriate behaviors?
Our major consideration should be the meaning and consequences of any behavior. We are hard pressed to think of examples of non-violent, non-traditional "male" or "female" behaviors which are actually harmful. However, there are traditionally "appropriate" gender role behaviors and males seem to have the most difficulty with deviation (showing emotion or nurturant behavior, etc.). Negative feedback in the form of name calling (Sissy, Homo), ostracism, or worse often results. This situation is often compounded for the more visible mentally retarded adolescent who may neither benefit from experience nor quickly adapt to changes in situationat etiquette. Behaviors such as holding hands, playing with dolls, "feminine" gestures, or playing with much younger children, all of which may have been accepted and considered cute at a younger age, are no longer seen as cute when performed by a male with an adult-sized body. Perhaps a useful approach is to avoid negative public reaction by specifically teaching more traditional age appropriate behaviors.
Question: Are masturbation and other forms of selfstimulation harmful or inappropriate for the mentally retarded adolescent?
Generally speaking, sexual self-stimulation directed toward climax (masturbation) or other forms of selffondling, rubbing and so on, are not harmful. Indeed, the majority of people engage in masturbation (90%for males and 70% for females) particularly around puberty. For some mentally retarded individuals (if they want to) masturbation may be one of the few available and/or appropriate pleasurable expressions of their sexuality. Some therapists (e g , Money) advocate explicit teaching of techniques for those unable to discover appropriate ways themselves. Problems tend to arise concerning the concepts of time and place, others' reactions, matters of privacy, and when masturbation represents compensatory behavior as a signal for help. Is the adolescent bored? Is there adequate privacy? Does he/she have adequate social skills? When one mother complained that her son would spend much of his free time masturbating, questioning revealed that because he had failed to learn basic play and related social skills he was constantly teased and ridiculed by others. The range of sources of satisfaction in his life were greatly restricted. Individual work with a clinical physical educator soon led to the acquisition of the needed skills. In another case, a mildly retarded boy made a practice of roughly slapping, and otherwise abusing his penis until it would become erect and bruised. He pretended to enjoy this activity with the gang. Actually, he had earlier discovered this attracted a lot of attention. Since this was the only attention he got, he capitalized on this one claim to social recognition. Again, helping him was not done by attacking the symptom, but by helping him acquire appropriate physical and social skills to gain acceptance.
Unfortunately, not everyone considers the meaning of the behavior. A recent newspaper article (The Washington Post, November 15, 1981) reported a pediatrics professor who daily prescribed "...doses of DES ... for retarded adolescents to stop them from masturbating in school classrooms." Not once was the subject of boredom (which is often abundant in such schools), harm to others, or issues of time and place mentioned. Only the retardates' lack of discipline was stressed.
Question: What should be done about nudity and self-exposure?
Nudity is a question of societal conditioning and family custom. Since public nudity is generally illegal in the United States, major questions usually concern behavior in the home. Many mentally retarded individuals are capable of learning that they may happily strip off their clothes here and not there, alone or with family, but not with others, and so on. However, those who have difficulty evaluating situations and their potential changes may need training that emphasizes the importance of being clothed at virtually all times. As always, special group members are particularly vulnerable to misunderstanding by others.
Exhibitionism or public exposure of one's sex organs, like public masturbation, is illegal and apt to result in public chastisement or incarceration. A female friend recently reported that while shopping she was surprised by a smiling young man and his exposed penis. She laughed and moved on, shortly to hear screams by another shopper. To protect all concerned she notified the "house" policeman, who ushered the young man out of the store. Fortunately, the police were either too busy or benevolently aware of his problem behavior and its lack of actual harm. Unfortunately, the young man's behavior was rewarded while not receiving any training in appropriate behavior. Lack of social skills and opportunities to be accepted by others may have made this seem to be the only available social expression of his sexuality.
Question: What should be done about sex play?
First let's examine sex play without considering molestation of younger children. The human body, including the genitals, is interesting to people and given the opportunity they will touch and explore each others' bodies. Sex play, unless it involves dangerous objects, humiliation, or aggression, is not dangerous in itself. This is especially true when pregnancy is not a concern. However, associated guilt feelings for participating in a "forbidden" activity or the negative reactions of others can be damaging. A behavior of great concern and one which is out of bounds legally and socially involves sex play with younger children. Often, such behaviors and /or their intentions are misinterpreted by others. We knew of a male adolescent who enjoyed playing with much younger neighborhood children, who themselves enjoyed this "adult's" attentions. Other parents mistakenly assumed harmful sexual intentions and reacted violently, when in fact, these younger children were the only ones interested and available, who were also his social equals. Predictably, normal physical touching and sex play (legitimized as playing doctor) did occur and although no one was injured, the children's fearful parents forbade them to go near the young man again. To protect the adolescent from negative reactions, incarceration, and from being taken advantage of by those more astute, it may be wise to prevent such encounters from occurring. Emphatic, repetitive training, perhaps including role play, may be appropriate.
Question: What should we do about inappropriate and annoying affectional and social behaviors?
The enlightened pediatrician may again recommend teaching appropriate behaviors, especially those that will not draw attention to the adolescent or result in harm, incarceration or unhappiness. Behaviors such as hugging strangers, indiscriminately kissing, repetitively shaking hands, etc., were adaptive, rewarding and cute behaviors at younger ages. Unfortunately, as physical appearances become more adult-like, these behaviors become less acceptable. In a calculated reaction to being hugged by one mentally retarded adolescent, one of the authors pushed the young man away while exclaiming, "I don't know you." Follow-up role playing of how and how not to meet strangers was successful. One can only imagine the potential dangers of indiscriminately passing out hugs on the street.
A related concern is the expression of affection between the mentally retarded adolescent and his or her parents. Questions arise concerning when the expression of physical affection should stop, the relationship between such expressions and homosexuality and incestuous thoughts and behaviors. Generally speaking, affectional behavior (hugging, kissing, wrestling, etc.) does not cause incest, homosexuality or other problems at any age. Negative attitudes about such behaviors, along with a fear of dire consequences, and lack of understanding by the adolescent, may. Sudden withdrawal of physical affection between, for example, father and son often forces the son to wonder what he has done to cause such a change - a difficult if not devastating situation for anyone. The task for the pediatrician is to make objective sense out of these and other concerns.
Question: Are mentally retarded adolescents more likely to be homosexuals than other adolescents?
Generally speaking, there is no reason to believe that mental retardation is related to homosexuality. However, any group of individuals, including animals, who are segregated sexually in schools or institutions will increasingly engage in the sexual outlets available to them. In addition, there is no evidence that a homosexual orientation or encounter is, of itself, harmful and indeed may be very warm and affectionate. How others react to such behavior is often very harmful. Unless a strong preference for a homosexual orientation is evident, it may be easier if the adolescent is encouraged to follow a more traditionally accepted heterosexual orientation. Remember, poor social skills, inexperience with those of the opposite sex, and lack of available and receptive partners may also be contributing factors.
Question: Should the mentally retarded adolescent be encouraged to date?
Unsupervised dating by the mentally retarded has tended to be perceived as posing a real threat. However, if the focus is shifted to the consequences, then we become concerned with adequate protection against pregnancy. venereal disease, and exploitation. If the life-enriching possibilities of dating are not offset by hazards to the individual or others, then dating may be desirable. As always the individual's situation, functioning level, and family philosophy need to be examined. If successful dating is to be a possibility, especially at a later, more independent time, the parent and pediatrician may feel obligated to help provide the adolescent with all the appropriate knowledge, skills, and psychological preparation that can be made available to them. As we have said, this may mean a specific "dating" or social interaction training program.
Question: Should marriage be a realistic expectation?
Marriage tends to be a precarious relationship for which many of us are not prepared. Furthermore, marriage for the mentally retarded is prohibited in many states, usually over concerns about potential parenthood. There is some research reporting the success of marriage between well supported and prepared mentally retarded individuals.14'15 However, as with other concerns, decisions need to be based on the individuals. Generally, there is a tremendous need for realistic education and counseling for everyone before and during a marriage. Marriage may contribute greatly to the quality of the prepared individual's life or it may be just one more experience of failure.
Question: Are there special implications for contraception counseling and education for the mentally retarded?
Questions of contraception require a highly individualized approach. Some mentally retarded individuals are very fertile, while others such as males with Down's Syndrome are usually considered to be infertile. The individual's ability to use contraceptive devices, including their physical, intellectual and motivational levels must be considered. We are learning that more individuals than we previously believed, with proper motivation and training, correctly use contraception. However, the prudent pediatrician may consider establishing individual needs before making any recommendations. Are there strong logical reasons for every retarded family to receive birth control? Johnson and Kempton comment:
One can assume almost certainly that the level of anxiety surrounding the sexuality of mentally retarded women is high, because of fears that they will be sexually used and the almost universal opinion that they should not bear children. Consequently, it is not unusual for some retarded women to be given contraceptives or to be sterilized mainly to relieve the anxiety of their parents or caretakers, in spite of the fact that women themselves may not be or have no intentions of becoming sexually active.4
Question: Is parenthood a realistic (future) option for the mentally retarded adolescent?
Parenthood is one of the most difficult jobs for which few of us receive adequate training. For the mentally retarded, decisions concerning procreation require the most careful education and realistic evaluation of the individual's resources. Sometimes practical experience with children, including the basic diapering and other messy aspects of infants, may be all that is required to clarify the realities of parenthood.
Certainly, we should make special efforts to help the special group members make their own decisions about childbearing rather than sterilize them or keep them sexually segregated to prevent pregnancy as we have in the past. They deserve thedignity of seeing parenthood as a choice for them... (In fact)... We are seeing many mentally handicapped adults making wise decisions, but only after education and counseling have pointed out what parenthood might mean to them.4
As for adolescents having children, we are inclined to recommend major efforts to discourage such happenings. The consequences are just not realistically in favor of the parents or the resulting child.
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