Sex Education For People With AUTISM, Matching Programmes to Levels of Functioning.
SEX EDUCATION FOR PEOPLE WITH AUTISM ©
SEX EDUCATION FOR PEOPLE WITH AUTISM MATCHING PROGRAMMES TO LEVELS OF FUNCTIONING
The topic of sex education for people with autism has been receiving considerable interest of late (Schopler & Mesibov, in press). Several factors have been combined in bringing this issue into the forefront. First, as with programmes for most handicapped children, programmes for people with autism began providing intensive treatment about 10-15 years ago. These programmes began with younger children who are now approaching adolescence. As these children now pass through adolescence, concerns about sex education are becoming greater as is true with all groups of children during this developmental phase. Second, many of the programmes for children with autism as compared with a decade ago when the rate of institutionalisation for adolescents and adults with autism was quite high (DeMayer et al., 1973; Lotter, 1978). This success has brought about more attention to all issues involving older clients. Finally, the principle of normalisation (Wolfenberger, 1972) has increased parent and professional interest in sex education for all handicapped children in general and those with autism in particular (Mesibov, 1976) for two reasons. First, this principle emphasises skills needed to function in community-based settings such as handling one’s own sexuality. Second, this principle emphasises aspects of functioning that are consistent with patterns and behaviours of non-handicapped people. For these reasons, an important effect of this principle has been an increased emphasis on sexuality.
Given the increased interest and concern about sexuality combined with our clinical experience confirming the significance of this issue, North Carolina’s TEACCH Programme has been developing ways of responding. In developing our approach we have tried to outline some basic assumptions about sexuality and people with autism and to follow with a programme that is consistent with these assumptions. To the extent possible, we have tried to make these assumptions consistent with those guiding other aspects of the TEACCH programme. In the following discussion, I shall begin with a description and explanation of our own basic assumptions and show how our basic programme philosophies have grown out of each assumption, giving case examples to the extent possible.
People with autism of all levels of severity experience sexual drives, behaviours, or feelings with which, at some point in their lives, they need assistance. The amount of assistance needed may vary greatly among individuals, even those at the same developmental level. For example, one person might simply need instruction on managing himself in public while another would need a thorough sex education course including heterosexual relationships.
The key concepts under this assumption are that all individuals, whether with autism or without, require some assistance and the timing and amount should be geared to the level of need. Although we assume that all individuals will need some assistance, this does not mean we should jump in an provide a comprehensive sex education course to someone who is neither interested, motivated, nor has demonstrated any need. As with all learning, the ideal situation is if information is provided when the person is ready to use it.
I think that many people shy away from providing sex education programmes for individuals with autism because they become too concerned with what lies down the road and do not respond to actual needs. In other words, we worry about the implications of people with autism getting married, having children, being able to parent, and related issues. In general, most of those issues are so far down the road that they probably aren’t worth worrying about at this time. Though I could be accused of being overly optimistic, it seems to me that by the time these questions really do become concerns, we will probably have more information and better techniques for dealing with them. Therefore, I don’t think it is worth delaying sex education now for fear of what it might lead to later on.
Our concerns about the ultimate outcome of sex education for people with autism reminds me of the story about the young pre-schooler who asks his parents where he came from. The parents had been quite concerned about sex education and how to handle it for some time, and responded with their full version of the birds and the bees and how little boys are made. The child’s puzzled response to all this was, “Well, does that mean I come from New York or Massachusetts?” I think we are often immobilised by reading more into this process than is necessarily there at the time.
A second example, perhaps more relevant, involves a high functioning woman with autism who I counsel regularly. Certainly my concerns about providing sex education for her are many of the same ones I have been described. I think they were heightened in her situation when she began dating a man with autism. However, I felt much better after the relationship ended because of her analysis of the break-up. When asked why they were no longer seeing one another her response was, “Well we had been to the library, had dinner at Hardee’s and had gone to the movies. Therefore, there really wasn’t anything left for us to do together so it was time for us to begin dating other people.” Certainly my concerns about her ability to be involved in a relationship with another person or to raise children were way beyond her interest and motivation at the time we were working together.
In summary, I do not think that our anxiety about the ultimate outcome of the sex education process, which might be years away should interfere with our ability to respond to some specific needs that people with autism seem to have. Moreover, these needs are probably evident in all people with autism at some time in their lives.
As with all aspects of the TEACCH programme, parent involvement and participation is a crucial ingredient. In the area of sex education, this is especially important because such perplexing issues require the combined resources of parents and professionals.
It is important for the dialogue between parents and professionals concerning sexuality to begin early, preferably before this becomes a major issue or problem. So much current sex education training is crisis oriented which dooms it to failure from the outset. We can be so much more effective if we begin before problems arise.
Ideally, it is desirable for professionals to discuss sexuality and handicapped people with the parents by the time the child reaches age 10. Because many parents do not know what to expect, they are very surprised when sexual behaviours appear in their child. If they are prepared for these in advance, they will be less traumatised when they occur and more likely to discuss concerns with professionals as they arise. The sexual behaviours they observe will less likely be construed as deviant which will make parents more likely to discuss and confront them.
The partnership between parents and professionals is especially important in the area of sexuality because each has their own unique roles. Any question about sexuality usually consists of at least two parts: which behaviours should we teach (values) and which behaviours can we teach (technique). Separating values from questions of technique makes it possible for us to deal with both more effectively. The value issues are the ones that professionals, alone, cannot and should not decide. These must be addressed through a continuous dialogue with the parents. Examples of value issues are whether or not a person with autism should be allowed to masturbate or whether or not two severely retarded people with autism of the same sex should be allowed to masturbate by rubbing against each other.
As professionals, we need to help families work through their feelings about these value issues. Our professional role should also include some perspective in terms of what others are doing about similar situations and what the professional literature suggests. However, the professional role should never include imposing a specific solution on any family in relation to these value issues such as saying a child should definitely be allowed to engage in certain behaviour or never allowed to engage in the behaviour.
Although it is not always easy, value questions can usually be resolved if these is a good parent professional relationship involving mutual trust. Once these value issues are resolved, the problems become a bit more manageable. If everybody is comfortable with an adolescent boy masturbating in the privacy of his own bedroom, the teaching of how to satisfy himself is less of a challenge. Although many professionals will still understandably be uncomfortable about teaching a boy to masturbate, this process is facilitated if they no longer have to worry about its appropriateness.
We also assume that sex education is something that is acquired through a systematic process, just like any other concept or skill. For people with autism, this means that it must be learned in a highly structured, individualised way using concrete strategies whenever possible. In addition, the emphasis on language must be minimal because of the difficulties that people with autism have with communication. Although the implications and possible consequences of sexuality are much different from more neutral contexts for many of us creating extreme emotional reactions at times, we must understand that these emotions, at least initially, are not experienced in the same way by our clients. Therefore, teaching sex education must involve many of the same techniques as teaching sorting, matching, letter identification, and the many other skills we teach which have much less of an emotional overtone.
Although sex education, as indicated in assumption 3, must be taught as one teaches other skills, there are also some differences in terms of the priorities we attach to sexual behaviour and our tolerance for deviance in this area. Although people with autism do not, at least initially, see sex as very different from most concepts, the rest of society obviously does. We must therefore be very careful to emphasise sexual behaviours as an important priority and to be less tolerant of deviations in this area that we might be with more harmless self-stimulatory or other unusual behaviours.
It is probably obvious to most parents and professionals that society is quite frightened about the sexuality of individuals with handicaps. Although this might seem silly to us, recent surveys (Keating, 1979) suggest that these fears plus concerns that group homes for handicapped people will lower property values are the major reasons why communities oppose these programmes. Those working with handicapped people must keep this in mind when setting appropriate priorities. Although a person with autism might only be unzipping his fly in public as preparation for the bathroom, the public might very well see this as exposing himself with very severe recriminations and restrictions resulting. Therefore, we must work toward socialising these and related behaviours.
As with other skills, our programme views a developmental approach as most effective for teaching sex education to individuals with autism. Because there has been a great deal of misunderstanding about what is and is not a developmental approach, let me define how I am using the term. First, a developmental approach means that each skill or behaviour is thought of as consisting of a series of developmental sequences. These sequences form a hierarchy of events which one can analyse and break down into several levels. Matching the skills of a person with an appropriate place on the developmental hierarchy results in the most effective teaching programmes. As the individual achieves all of the skills related to a specific level, that individual is then ready to move on to higher skills and concepts.
The notion of matching teaching programmes to levels of functioning has been a vital part of the effectiveness of our teaching programmes. Just as two people with autism having differing motivations will not require the same kind of information, a person with no language and a measured IQ below 25 will require very different sex education programmes from one who is verbal with a measured IQ around 100. Obviously, a higher functioning person with more language ability will be able to assimilate more information than one with no language and very limited cognitive abilities. A second reason for matching programmes to levels of functioning is that people with autism functioning at different levels will probably have different long-range goals in terms of their life situations. An individual with autism who is expected to function independently in a normal environment will have different needs for sex education than a person expected to live in a group home and work in a sheltered workshop. The former will need more information and a greater ability to function autonomously.
The second aspect of a developmental approach concerns the context in which skills are taught. One of these contexts is that of normal development. In analysing the sexuality of adolescents with autism, we must not only recognise their differences from non-handicapped peers but also some similarities. The impulsiveness, aggressiveness, confusion, and defiance that often accompany the biological and physical changes occurring in adolescents with autism are often not so different from those same behaviours occurring during normal adolescent development.
The third aspect of a developmental approach is that behaviours can not be dealt with in isolation but must be considered in the context of other skills. As sex education programme must take into account the communication level, social skills, cognitive ability, conceptual ability, and all other aspects of a person’s functioning. To be fully effective, each of these aspects must be considered in planning a sex education programme.
For example, two adolescents with autism might have the same general IQ and language ability but very different interpersonal experiences. If both express a desire to date members of the opposite sex, then their sex education programmes would have to differ accordingly. The person who has never talked to a female, let along a male peer, might have to focus on some simple interpersonal skills such as looking at other people, initiating conversations, and developing appropriate interpersonal strategies. Dating might still be an appropriate long-range goal but this would be much further on down the line. On the other hand, a young adult who has already mastered these skills would be able to focus on applying them in an interpersonal setting. This person’s programme might be based more on understanding interpersonal needs, what people do on dates, handling sexual issues, and other related concerns. Although both of these adolescents are of approximately the same age and have similar cognitive and communication skills, their social development would dictate different teaching strategies.
Returning now to the first aspect of a developmental approach, the hierarchy of skills, we have identified four levels for the sex education of individuals with autism. These levels relate to specific skills that are needed, assuming that the value issues have already been resolved through the parent-professional collaboration process I have described. The levels on the skill hierarchy include the following: discriminative learning, personal hygiene, body parts and functions, and a comprehensive heterosexual sex education programme. I will discuss each of these separately.
The most basic sexuality skills that all individuals with autism must learn are simple discrimination skills. These include knowing when and where to disrobe, masturbate, touch other people, and related behaviours. For individuals with autism who have little language and are functioning intellectually within the severely to profoundly retarded range, this might be all they are able to achieve in the area of sex education. However, no other skill will be more important for their ability to function in either group home or sheltered workshop settings.
In our sex education discrimination training procedure the same basic principles are used when we teach other skills. Reinforcement for appropriate behaviours in the appropriate place are combined with a form of punishment or time-out for inappropriate behaviours. The principles of reward and punishment are as effective with sexual behaviours as with the teaching of any other skill.
As with all of our teaching, we combine the principles of reward and punishment with the use of considerable structure. One example of this was a classroom with an adolescent boy who masturbated in the school. Along with rewards and punishments for appropriate and inappropriate behaviours, his teacher posted signs resembling stop signs in each of the places that the child had masturbated. This was co-ordinated with the parents who did the same at home. These signs provided the additional structure that was needed to inhibit masturbation in these places. The teacher and parents agreed that the adolescent’s bedroom was an appropriate place for this activity so a green sign which said OK was posted in this spot.
Discrimination training is often facilitated by environmental manipulations that make desired behaviours more likely and undesirable behaviour more difficult to perform. This can be accomplished by having an adolescent wear a belt making it more difficult to put his hands in his pants, having an adolescent girl wear shirts without buttons making it more difficult to remove them, or similar modifications. Any environmental changes which make a behaviour more difficult and time-consuming can facilitate the general treatment process.
The literature on discrimination training of sexuality has identified overcorrection as a therapeutic technique which has been effective. As defined by Foxx and Azrin (1973a), overcorrection involves following an undesirable behaviour with activities designed to correct the damage that the inappropriate behaviour has caused. The describe two kinds of overcorrection, restitution and positive practice. Restitution requires that an individual correct the consequences of an inappropriate behaviour by making the disturbed situation significantly improved over that which existed prior to the behaviour. For example, a child who marks a wall may be required to clean the mark as well as the remainder of the wall.
The other kind of overcorrection, positive practice, consists of repeated direct and appropriate behaviours following an error. For example, positive practice in the Foxx and Azrin (1973b) toilet training programme involves walking to the bathroom and sitting on the toilet ten or fifteen consecutive times following an accident.
Overcorrection has been used to modify inappropriate sexual behaviours in several studies. Polvinale and Lutzker (1980) used an overcorrection procedure to eliminate genital self-stimulation by requiring a 13 year old boy to apologise to each of six different peers and/or teachers after each incident. A more elaborate over-correction procedure involving restitution and positive practice was described by Foxx (1976). He effectively eliminated the public disrobing of two profoundly retarded women by requiring them to add extra clothing each time they were caught disrobing. In addition to this restitutional overcorrection, the positive practice consisted of straightening other women’s hair, tying their shoes, and fixing their clothing. Fox reported this procedure to be more effective than time-out or physical restraints. The main disadvantage of over-correction, as reported in the literature (Dawson & Mesibov, in press), is that it is time-consuming and requires one-to-one supervision. However, given the potential seriousness of sexual behaviours, it should certainly be considered as an intervention technique.
Although nonverbal clients with autism who are functioning intellectually in the severely to profoundly retarded range will primarily be on the discrimination level, higher level clients will also need this training. We have had several higher functioning clients who have got into difficulty because they have allegedly exposed themselves. Upon a more careful investigation, we have learned that the difficulty has resulted from both their impulsiveness and obliviousness to others. In one of these instances a client with autism regularly removed his clothing en route to the bathroom. What seems to have happened is that upon deciding to go to the bathroom he began removing his clothing, generally disregarding others passed along the way. This and similar situations suggests that discrimination training can be important for clients at all levels.
The next level on the developmental hierarchy is personal hygiene. As with discrimination training, this will be important for clients with autism at all levels of functioning. For nonverbal clients functioning intellectually in the severely to profoundly retarded range, this training will probably represent the highest developmental level they can achieve. It should include aspects of personal hygiene that will make them more comfortable personally and will also make it more comfortable for others to be around them. Training in this area will include cleaning themselves properly after a bowel movement, appropriate hygiene during their menstrual periods, changing underwear, cleaning themselves appropriately in a bath or shower, using deoderant, and related behaviours.
For more verbal and higher functioning individuals with autism, these same personal hygiene behaviours should be taught. Even though some of this information might seem very basic, for individuals with autism who are not always interpersonally attuned these concepts are often overlooked. In addition, it has been our experience that personal hygiene for higher level clients is a good bridge to sex education. Many of these people are somewhat anxious about discussing sexuality and related issues and some preliminary work on personal hygiene can provide an easier entree into more sexually explicit discussions.
As indicated earlier, most nonverbal individuals with autism functioning intellectually within the severely to profoundly retarded range will not generally need any education training beyond the discrimination and personal hygiene phases. However, there are several other strategies we have found useful in working with these clients.
*First, it helps their overall behaviour, and especially their sexual acting out, if they have some low-key times when they can be alone and away from others. This is a normal adolescent desire and one that should not be denied because an individual has severe autism. Sometimes we get so involved in always programming for these clients that we forget their need to be alone.
*Second, it is our experience that additional opportunities for gross motor activity can sometimes be helpful. We sometimes forget that adolescents have an extraordinary amount of energy, even if they have autism. The recent literature has demonstrated the positive effect of an exercise programme on behaviour difficulties of individuals with autism (Watters & Watters, 1980) and we think these results generalise to sexual behaviours as well.
Finally, we think it is helpful to allow these individuals to have contact with the opposite sex. Even severely autistic individuals seem to know the difference between men and women and to be more attracted to members of the opposite sex. Providing heterosexual experiences such as classroom programmes, leisure activities, and residential living situations seem to, in some way, meet the sexual needs of these clients. The more of these opportunities we can provide, the more appropriate their sexual behaviour will be.
Next on the developmental sequence is information about body parts and their function. Most of the clients who will be at this level will have some language ability and be functioning intellectually within the moderately retarded range or higher. The goal of this phase will be to introduce concepts of hody parts and their functions and to be sure these are understood by adolescents and adults with autism.
There are a number of materials available for this phase of training. The manual by Lieberman and Malone (1979), developed by Amy Lettick’s programme, ahs some excellent examples which can be used. Most sex education books can be adapted for individuals with autism. The most important part is not the materials but to be sure that the client has a full understanding of what the words and concepts mean. So often individuals with autism can use the right words but have very little understanding of the important concepts. This can be a particular problem in sex education where most of us feel a bit uncomfortable and don’t probe for precise meanings. In providing education about body parts and functions to an individual with autism, it is extremely important to be very very explicit and concrete, even if this involves using words or terms that one is not normally comfortable with. This embarrassment and discomfort has primarily social overtones which individuals with autism will not understand. Therefore, we must break through some of these barriers if we are to be effective sex educators.
For those whoare able to understand the body parts and their functions including reproduction, the final developmental phase is a complete sex education programme, including heterosexual relationships. For some individuals with autism, I believe this is a very appropriate and necessary phase. Although ten years ago we might not have believed this to be possible, I think this is important for us not to be trapped inside of our own preconceptions.
My work with adolescents and adults suggests that a growing number of them are becoming interested in members of the opposite sex. This is, in large part, a tribute to the excellent work that has been done with these clients. I believe it is important for us to build upon our excellent foundation and provide the extra instruction that they are now capable of assimilating. But, again, as I indicated earlier, this does not mean that they have to be ready for heterosexual functioning, parenthood, and everything that is involved in being an adult heterosexual being. What readiness at this phase means is that we have people who are interested in relating to members of the opposite sex and who want more information about how to accomplish this.
At this level of training, a significant amount of role playing is needed. As in many areas, individuals with autism have difficulty learning when they are only told something. Role playing how to meet other people, how to talk to them, how to deal with problems that occur, is am important part of learning about heterosexual relationships. Role playing helps to make some of the more obscure concepts easier to understand and utilise.
In counselling adolescents and adults with autism, several other techniques have also proven useful. The early sessions are generally used simply to focus on establishing rapport. This is done to make the clients feel at ease and to reduce the anxiety that many bring to these meetings. Early sessions are focused on topics of interest to the adolescents or young adults which elicit minimal anxiety.
Once rapport has been established, a transition is made to the discussion of sexuality. As indicated earlier, personal hygiene can be a good transitional discussion topic. Once the early rapport has been established, I try to schedule my sessions with a predictable and satisfactory structure. Each session lasts about forty-;five minutes. The first fifteen minutes are for general discussion or a project that we work on together. After that we move to a thirty minute discussion which starts with personal hygiene and moves through the developmental stages described earlier.
In these discussion sessions, I make frequent use of the dictionary for discussing and defining sexual terms. Many clients with autism like to read dictionaries, probably because of the absolute and concrete definitions they provide. As the counselling progresses, clients generally become less anxious and seem to enjoy their participation in the process. Families often report more responsiveness and communication at home. It seem that these discussions allow some outlet for the concerns that many adolescents and adults with autism are feeling.
As these sessions progress, the topic is not only sexuality. Issues of concern include personal hygiene, general issues (Why do men have hair on their chests?), how to relate to others, and a variety of other related issues for these clients.
The second aspect of a developmental approach to teaching concerns the context in which skills are taught. One of the most important contexts is that of normal development. In analysing the sexuality of adolescents with autism, we must not only recognise their differences from non-handicapped peers but also the similarities.
There are many developmental changes that non-handicapped adolescents experience which might have relevance to adolescents with autism. During adolescents, non-handicapped children are given more freedom in going from place to place on their own and are also given more responsibility for carrying out tasks independently. Moreover, they are beginning to explore new relationships with the opposite sex and to learn about sexual changes affecting them. Non-handicapped adolescents also begin to form some image of themselves during this time which will later contribute to a career choice.
In considering adolescents with autism, it is probably useful to realise that, in some form, these same general issues will be of concern. The way of dealing with them will of course have to be different from what is done with non-handicapped adolescents and will also depend upon developmental levels. However, some general statements and guidelines might be useful.
For example, the issue of additional freedom should probably be addressed Is a particular being given as much freedom as he can manage in getting from place to place? Are there any situations in which one is accompanying and individual with autism when this is unnecessary? Or could they be helped by some teaching to locomote more independently?
Responsibility is another important issue in adolescence. Even though adolescents with autism can’t achieve total independence, are there some tasks with which greater independence can be achieved? Some of these might include getting to bed on time, getting one’s work done in class, cleaning one’s room or doing the laundry. In addition, we might ask about new tasks that could be learned including preparing simple tasks or a breakfast, buying materials in a store, yard work, or minor household repairs.
Normal adolescents are also learning about sexuality and their relationships with members of the opposite sex. Certainly the developmentally oriented sex education programme described in this presentation could be helpful to them in dealing with these issues. Finally, vocational planning is generally described in conjunction with an individual’s need for a skill that can be used after formal schooling is completed. However, this is also important for one’s concept of self. During adolescence, there is a search for direction and purpose which most non-handicapped children pursue. Although perhaps less global, similar concerns probably affect individuals with autism as they become aware of their handicaps and the fact that a world exists beyond schooling. Concentrated training towards specific vocational goals might be helpful in providing more direction and structure for these years.
The third aspect of a developmental approach is the idea that behaviour can not be dealt with in isolation but must be considered in the context of other skills. Numerous examples have already been given throughout this presentation of how the experiences, motivations, and interpersonal needs of individuals with autism must be considered along with their cognitive and language skills.
Although our sex education efforts are still in their pilot form, I hope that this discussion has provided some understanding of how our programme uses parent involvement and developmental concepts in teaching sex education to individuals with autism. In addition, I have tried to provide some understanding of our basic approach and our thinking about these most important issues. We would expect that as we proceed, our understanding of these issues will increase as much as our general understanding of autism has over the past two decades.
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