BY: DEMETRIOUS HARACOPOS & LENNART PEDERSEN
Foreword.
Inttroduction.
Autism.
Sexuality and Autism.
The Aims of the Survey.
Hypotheses.
Method.
Results.
Discussion.
Sexual Instruction and Training.
References.
Foreward
This report describes a nation-wide survey of sexual behaviour in young people and adults with autism. The survey is the first of its kind in both a national and international context. In spite of increasing interest, there is very little empirical material available and the subject receives only limited attention in the literature.. The hypotheses and assumptions of professionals in the field are based mainly upon personal or culturally dependent attitudes.
In the course of our many years of work with autistic people, we have employed our own frame of reference in describing, analysing and understanding problems in sexual behaviour. We have also defined guidelines, strategies and methods which can be used with this handicap group.
Many autistic people display abnormal sexual behaviour and have problems in satisfying their sexual needs. Inappropriate sexual behaviour and attempts to make contacts often place a very considerable strain upon the immediate surroundings. This can lead to an erroneous treatment or maybe a paralysis of the ability of the surroundings to take action with consequent neglect of the problem. In reality, unresolved sexual problems can result in reduced quality of life. When one realises how sexuality influences the human emotions and behaviour, it is obvious that this topic should be given more attention.
The report is intended for professionals with day-to-day responsibility for the education and treatment of autistic people. It consists of documentary material which is intended to contribute to a greater knowledge of how autistic people express and relate to their sexuality. We also hope that parents of young people and adults with autism will find this report helpful. It may provide an opening for them to discuss this difficult subject with other parents or experts, if or when sexuality becomes a problem for their own son or daughter.
This survey was financed by a grant from the Danish Social Ministry.
We would like to express our gratitude to the many parents who consented to the gathering of information about the sexual behaviour of their sons and daughters and to the many staff members who passed this information on to us.
Our thanks to also to the many consultants who provided us with qualified feedback on the design of our survey:
Preben Hertoft, Psychiatrist, The Sexological Clinic, National Hospital of Denmark, Copenhagen. Torben Isager, Psychiatrist, Child Psychiatry Out-Patient department, Nordvang, Glostrup. Tina Harmon, School Consultant Psychologist, County School Psychology Department in the County of Copenhagen.
We also owe a debt to psychologist Per Svarre Rasmussen who contributed to testing our questionnaire material in a pilot study in advance of the survey itself. We extend our thanks to data processing consultant Benny Karpatschof, M.A. psych., of the Psychology Laboratory of the University of Copenhagen, who not only performed the quantitative analysis of the results but who was also a source of inspirational and contributed with his own qualitative evaluations of the results. Finally, special thanks to David Sansome for his professional assistance during the final stages of editing.
Copenhagen, May 1992
Inttroduction.
The fact that very few reports on the autistic syndrome have focused on sexual problems is probably due to the general tendency in society to ignore or even suppress sexuality as a natural and integrated part of personality development. This applies both to the non-handicapped part of the population, and in particular – to the handicapped part. In the twentieth century, many mentally and physically handicapped people have been confined to institutions, their daily life overshadowed by surveillance and control. These people have had no opportunity for a private life in which their sexuality could develop within a framework of emotional security. This has resulted in suppressed sexuality, a life of celibacy or concealed sexual activity, often under circumstances which are both unwanted and humiliating.
The myth about the lack of or reduced sexual needs of the retarded person has thrived right up until recently (Buttenschøn 1987). The myth about unconstrained and perhaps dangerous sexuality among handicapped persons lives on unabashed. This is apparent each time the normal population is confronted with handicapped people moving into residential environments in ordinary neighbourhoods. Within the last 20 years in Denmark, efforts have been made to bring about changes in the inhuman conditions under which mentally and physically handicapped people have lived.
In 1986, the Danish Parliament decreed that a set of guidelines should be prepared on sex education and sexual training for handicapped adults (Social Welfare Agency, 1989). These guidelines are a result of a debate among professionals who work with handicapped young people and adults – a debate which underlines the importance of taking the sexuality and related problems of these seriously. The aim of the guidelines is to enable parents and professionals to take appropriate action which they are confronted with the sexual problems of handicapped persons.
The guidelines set out the most important ethical questions and the legislative and legal aspects in a way which makes appropriate action possible. On the other hand, knowledge about the specific problems which are associated with the sexual development of autistic people is lacking. Like-wise, there is limited knowledge and experience with regard to finding approaches and interventions to the sexual problems of this handicap group.
Haracopos (1988) points out the necessity to protect autistic and other mentally handicapped people, as they can become the victims of sexual exploitation. On the other hand, one must be careful not to limit their opportunities of establishing relationships with other people. Haracopos argues that the treatment effort should concentrate on teaching the young people behaviour which promotes their ability to establish relationships in general and not only those of a sexual nature.
Gillberg (1983) mentions three main problems which are normally encountered in discussions of sexuality among autistic people:
1) they have a tendency to masturbate in public.
2) they demonstrate inappropriate sexual behaviour towards other people
and
3) many use a self mutilating technique when they masturbate.
Parents of youngsters with developmental disorders also report problems if their son or daughter directs their sexual interest towards other people (Ford, 1987). De Myer (1975) reports on the basis of a survey in which parents were interviewed during puberty that when their sexual desire is aroused, many seek physical contact with other people by rubbing their genitals against them.
Otherwise the literature deals primarily with the problems of high-functioning autistic young people and adults when they begin to express sexual interest towards other people. Dewey and Everad (1974) suggest that autistic people can feel attracted by other people but that the expression of their sexuality is often naive, immature and inexperienced. In spite of social developmental problems, they do not consider problems with uncontrollable sexuality to be very likely. The autistic disorder thus inhibits the development of those skills which govern the exchange of sexual signals between two people attracted to one another.
Marriage also appears to be out of the question. In a survey of 63 autistic children, non had married in adulthood (Rutter 1970). In a major survey by Kanner et al. (1972) including 96 autistic people, none had seriously considered the possibility of getting married. In another survey, 21 high- functioning autistic people were asked about their knowledge of, experience with and wishes related to their sexuality (Ousley & Mezibov 1992). The survey suggests that there is more sexual frustration in autistic men as a result of the discrepancy between their interest in sexual activity and their lack of sexual experience. This is not the case among the female residents who have more sexual experiences with others. This study also shows that sexual experience in a group of mentally retarded people was generally greater than in the group of autistic people.
A few well-defined suggestions exist on how one can support, teach and bring up autistic people in relation to their sexual needs (Melone et al> 1987; Ford 1987). When the question is one of satisfying a sexual need, efforts are mainly focused on the young person’s masturbatory practices and rarely on how the young person can be supported in his or her sexual contacts.
Autism
Even though the occurrence of autism is small (ca. 1 per 1000), it enjoys an overwhelmingly large professional interest. Contributions to the understanding of the causation and pathology of the autistic syndrome come from such fields as neurobiology, neuroanatomy and neurophysiology, from cognitive psychology and the psychology of learning etc. Today, it is accepted that autism is a developmental disorder of a biological nature. Psychiatry categorizes autism as a “Pervasive Developmental Disorder” on the basis of the diagnostic classification systems ICD 10 and DSM III R (Lier et al. 1983)
The autistic disorder is already present in the early months after birth or appears within the first 3 years. Autistic children display retardation and deviant development in language ability and in their social and communicative skills. In addition they display stereotype, repetitive or ritualized patterns of behaviour. Besides these cardinal symptoms, the autistic child has perceptive and sensory motor disorders. Aggressive and self-mutilating behaviour is often present as are refusal to eat and sleeplessness. In addition, the children can also suffer from other neurological or biological disorder. For example, epilepsy is found in up to 20-30% of cases during childhood and adolescence.
The overriding problem facing autistic people – especially in relation to sexuality – is their inability to enter into, maintain and understand social relationships with other people. Whatever his or her cognitive level and language ability, and in spite of his or her interest in having contact with others, the autistic person suffers from a basic disorder with regard to his or her ability to interact socially. This disorder can lead to rejection by the surroundings, resulting in withdrawal by the autistic person.
The majority of people suffering from autism in their youth and in adult-hood can continue to develop in different areas (Mesibov 1983); Pedersen et al. 1985). Yet the social-communicative handicap remains as an all-decisive problem. Ritualized and stereotype behaviour seems to diminish, sleeplessness and eating problems disappear and hyperactivity is considerably reduced. Practical and self-help skills continue to develop. Interest in social interaction and communication now becomes pronounced in the form of difficulty in perceiving the emotional disposition of other people and empathizing with them.
Autistic young people and adults also have difficulty in expressing their own feelings in a way which others can understand or accept. Marriage seems not to be the only thing which autistic people cannot achieve. Friendships and acquaintances in general seem out of the question. Even if he or she functions at a high intellectual level and can fully look after him or herself in a normal daily context, the autistic person will still make a naive and immature impression.
Another basic problem for autistic people is their inadequate or lacking imaginative ability. The lack of ability to perceive and understand emotional expression in other people seems to be related to a depleted or limited ability to imagine anything at all. The ability to imagine what the result of ones own actions could be and to retain previous experiences and consequences which might aid in imagining what will happen now or later seems to be beyond the reach of autistic people. The result is often impulsive behaviour or a rigid and foreseeable – even ritualized – way of organising their actions. The basic disorders which characterize autistic people have a profound effect upon their sexual development.
Sexuality and Autism.
As already stated, very little empirical material is available today about sexual behaviour in autistic people. It is, however, obvious that the pervasive personality disorders which autism gives rise to must lead to considerable problems in sexual development and behaviour.
Sexuality is part of the organic growth and maturity process, connected to the development of the nervous system, the metabolism and hormone secretion. Sexuality develops through social interaction and communication, through physical contact, play and the assimilation of social rules and norms. Sexuality is an emotional experience of oneself and of others. Sexuality is fantasy, it is the ability to imagine, and ability based on perception, understanding and symbolic concepts fished from the stream of everyday experiences. Sexuality is desire, excitement and orgasm. It must be discovered, it must be practised and it must be experienced. This can be done in play, alone or together with others.
The development and maturity process of autistic people can be affected by a large number of disorders in the nervous system, in the metabolism and in the hormone processes. Epilepsy is common, often requiring medication. Anti- psychotic medicine is also used to suppress aggressive and self-destructive behaviour and can indeed affect the sexual drive. Studies among adult psychiatric patients suggest that anti-psychotic medicine can have an inhibitive effect upon libido, erection and ejaculation (Mitchell & Popkin, 1983; Hertoft, 1987).
On the other hand, we do know that social interaction, communication and physical contact are primary problem areas for autistic people. We know that find it difficult to, or are not able to empathize with other people and that they also have problems in understanding and expressing their own feelings, needs and desires. We know that their fantasy and abillity to imagine or limited and we know that their tendency to ritualize and repeat behavioural patterns in a stereotype manner impedes them in experiencing life. They are restricted in their ability to relate to experiences, both in relation to physical, social and psychological contexts.
Puberty with its sudden growth and change in physical appearance and growing sexual drive can often have the effect of creating anxiety for the autistic young person. An autistic girl described the horrible, ticklish feeling she felt in and around her clitoris. Sometimes she spoke to it, telling it to stop. in extreme situations, she could even strike it a hard blow. She refused to touch herself, not because she was afraid of the feeling but because she found the though of touching herself “just too disgusting”. An autistic youngster said he was afraid his penis would snap when he had an erection.
The lack of understanding of social norms and rules can mean that the young person undresses in public and maybe begins to masturbate. The lack of ability to empathize can also lead to a young autistic person trying to touch, kiss or hug strangers. Autistic young people can just as easily be attracted by small children as by peers. In spite of the fact that the young person lacks the means to maintain a love affair, the desire for a boyfriend of girlfriend can develop into an obsession. Defeats in connection with attempts to establish friendships or love affairs and/or rejection of sexuality motivated physical contact can lead to frustration and result in an aggressive or self-mutilating behaviour. The person can also withdraw within himself or even give up his sexuality entirely.
The Aims of the Survey.
1. To describe autistic young people’s and adults’ sexual behaviour, including whether they attempt to satisfy their sexual desire by masturbating or through sexual contact with others. In addition, to describe the extent to which the sexual behaviour seems to be deviant.
2. To examine the experiences of staff and their attitudes to the sexual behaviour and problems of their autistic residents.
3. To define methods of assessment or sexual behaviour/problems in autistic people and to define guidelines for intervention as well as the ethical considerations and policies upon which these should be founded.
Hypotheses.
Prior to the survey, five hypotheses were advanced with regard to the results:
1. Sexual behaviour is a common occurrence among people with autism.
2. Sexual behaviour is often expressed in an inappropriate way for the surroundings and the autistic people themselves.
3. Sexual behaviour is expressed in a deviant and bizarre way in relation to the accepted norm.
4. Behavioural problems occur in connection with unresolved, sexual problems.
5. Autistic people are unable to establish or have difficulty in establishing a sexual relationship.
Method.
Subjects.
The survey comprises 81 people of whom 57 were men and 24 women between 16 and 40 years of age. The subjects’ average age was 25.8 years. They had all been diagnosed as autistic at an early age, meaning that they fulfil the criteria based on DSM – III – R (Amer. Psych. Assoc. 1986). The survey did not include subjects with extensive sensory and physical handicaps. Alls subjects lived in a group home specially designed for autistic young people and adults. One institution, however, had been established for people with mental retardation. All residential set-ups had trained pedagogical staff, many with many years of experience in working with autistic people.
In anticipation of finding correlations between the sexual behaviour of the residents and their level of development, we included information about their general functional level, degree of autism, developmental age and spoken language proficiency. On the basis of an autism rating scale (Haracopos & Pedersen 1992), we found 41 people with a mild degree of autism, 21 with a moderate degree and 19 with a severe degree of autism. On the basis of a rating scale containing and assessment of the general functional level of the residents (Haracopos & Pedersen, 1992), we found 22 high-functioning, 42 moderate -functioning and 17 low-functioning subjects.
Developmental age was assessed using a rating scale covering 6 primary areas of normal child development from ages 0 to 6-7 years (Haracopos & Kelstrup et al., 1975). Finally, with an assessment of the spoken language proficiency of the subjects, we found 25 showed good spoken language, 29 a fairly well developed spoken language and 27 very little or no spoken language. The findings showed 16 subjects (20%) with epilepsy, corresponding to the general level found by other, extensive studies.
As assessment was included of behavioural problems of the subjects, based on a rating method which splits the problems into 3 categories: self- destructive behaviour, aggressive behaviour and destructive tendencies. Each behavioural problem was rated according to its frequency and the degree of its expression. We found that 80% of all subjects had at least one of these behavioural problems. Another 32 subjects (39%) were receiving anti-psychotic medication at the time of the survey. Table 1 shows the above subject data by sex.
Table 1 Subject Profile
………………………….Men…….Women…….tatal
Number………………..57…………24……………81
Degree of autism
Mild…………………….25………….16……………41
Moderate…………….17……………4……………21
Severe…………………15……………4……………19
Function level
High…………………….14……………8……………22
Fair……………………..30…………..12……………32
Low……………………..13…………….4……………17
Spoken language proficiency
. Good………………….18…………….7……………25
Fair……………………..19……………10…………..29
Little/None…………..20…………….7……………27
Epilepsy………………10……………..6……………16
Anti-psychotic medication.25……7…………..32
Behavioural problems
Self-destructive……..34…………….8…………..42
Aggressive…………….27…………..11…………..38
Destructive tendencies.28………20…………..48
At least 1 behaviour problem.44…..21……..65
Material
In addition to background data, a questionnaire was prepared to gather information about the sexual behaviour of the subjects.
B) Sexual behaviour directed towards others, and
C) Objects and other stimuli which are part of the sexual arousal phase or which contribute to sexual satisfaction.
In addition, the questionnaire included a number of items designed to reveal the attitudes and experience of the staff in relation to the sexual behaviour of their autistic residents.
Masturbation was covered by questions concerning:
1) Whether men had an erection and achieved orgasm. In the case of women, whether they could reach a climax with subsequent physical relaxation.
2) Where masturbation took place.
3) The frequency of masturbation.
4) The use of objects for direct stimulation of the genitals, and
5) Reasons why subjects stopped masturbating.
Sexual behaviour directed towards others, henceforth referred to as person- oriented sexuality, was split into 3 categories:
1) Definite signs of person-oriented sexuality including behaviour such as touching the genitals of others, provoking others to touch ones own genitals and touching other parts of the body, with definite signs of sexual excitement (erection, simultaneous masturbation) and attempts at or success in sexual intercourse.
2) Less definite signs of person-oriented sexuality including behaviour such as holding hands, kissing and hugging, conversations about partners and sex, and touching other parts of the body than the genitals, without definite signs of sexual excitement in the subject.
3) No signs of person-oriented sexuality.
Objects and other stimuli which are part of the sexual arousal phase or which are used during the sexual activity included sensory stimuli (visual, auditive, olfactory and tactile), materials and objects (rubber, leather, dolls) and chosen people or parts of the body (hair, feet, bare arms) as objects of sexuality and its practice.
The attitudes and experience of the staff included questions about:
1) their attitude to the sexuality of residents in general
2) norms for sexual activity
3) an assessment of which forms of support and assistance are necessary for residents in relation to their sexuality.
4) analyzing and describing the sexual problems of the residents,
5) whether they had experience in dialogue with residents about these problems,
6) whether they had devised programmes in connection with sexual problems for individual residents,
7) What staff members considered realistic in connection with the sexuality of their autistic residents.
Procedure
After discussions between parents and staff, 20 out of 21 selected group homes agreed to take part in the survey. The questionnIres (about background information and sexuality) were filled out by the staff member responsible for each resident, often in collaboration with the rest of the staff. The section of the survey dealing with the attitudes and experience of the staff was filled out by each pedagogue alone
Results.
Test was performed on the items in the questionnaire dealing with the sexual behaviour of the subjects.A reliability
The data were collected using two forms, the first containing general information including developmental and behavioural features, the second dealing with the specific question of sexuality. Both sets of data were structured and analysed preliminary by SPSS. The central variables (about 100) were merged into a system file in SPSS and analysed. Finally, the most important 27 variables were selected and subjected to a multivariate analysis by DIGRAM, a system for multi-dimensional contingency tables (Kreiner, 1987). DIGRAM operates with causal models where the variables selected are partitioned into causal blocks and tested by exact conditional tests using graphtheoretical collapsibility.
Thus all the significant results reported are based not on the prima facie value of a marginal test, but on the total contingency table of all the 27 variables analysed in the final step. The step used is a version of Kendall’s so-called rank correlation test (Kendal’s gamma. An investigation of inter-rater reliability was performed by two teams of professionals answering the items used in the questionnaire on sexuality with a concordance of 0.86. A subset of 14 subjects was investigated for inter-code reliability (the interpretation of items by the authors in determining signs of sexuality). A total of 733 items showed a concordance of 0.97.
Masturbation
The objectives have included finding out how many of the residents masturbated and how many of these were able to reach orgasm. In some cases, this question posed no difficulty as the resident in question masturbated openly and in a quite ordinary way, thus leaving no doubt. Some residents showed signs of sexual arousal without masturbating. Others “manipulated their genitals without showing signs of arousal.” In these cases we have not allocated an affirmative answer to the question whether the resident masturbated. Some residents related themselves about their sexual behaviour. Others practice their sexuality in places and at times where the staff cannot avoid being present. Others still confine their sexuality to a stringent sphere of privacy with the result that the staff know nothing about it.
As far as the question of orgasm is concerned, an affirmative answer was recorded if the staff had observed sperm in the bedclothes of clothing of a male resident or if they had witnessed a female resident having a phase of excitement with a climax, followed by clear physical and mental relaxation.
Masturbation and Orgasm
The results as far as masturbation and orgasm are concerned show that 68% of the residents masturbate. Of these, 60% reach orgasm. 74% of males masturbated and 54% of females. 64% of males who masturbated reached orgasm while 46% of females reached climax. The proportional difference between males and females who masturbate and reach their orgasms is similar to what is found in studies of the normal population (Masters & Johnson, 1988)
Table 2: Masturbation and orgasm
………………….Number who…………………………….Number achieving
………………….masturbate………………………………………orgasm
…………………Total…….% of total……….Total…..% who masturbate
Men……………..42…………(73.6)…………..27…………….(64.3)
Women………..13…………(54.2)…………….6…………….(46.1)
Total…………….55…………(67.9)…………..33…………….(60.0)
More low functioning residents (76%) masturbated than high-functioning residents (50%). No connection was found between the ability to reach orgasm and functional level.
Masturbation frequency
The results also include data about how frequently the residents masturbated (daily, weekly, or more rarely). It was found that 25% of those who masturbated, did so daily, 49% did so about once a week and 16% did so more rarely. There is no discrepancy between the sexes with regard to frequency of masturbation. Furthermore, the frequency of masturbation correlates with the developmental level of spoken language and age. The percentage of subjects masturbating daily is set against spoken language proficiency. About 45% of subjects without spoken language masturbate daily while only about 10% of good spoken language masturbate daily, showing a high significant correlation (p<.001).
The average frequency of masturbation in subjects with fair to good spoken language decreases with advancing age. This is not the case in subjects with little or no spoken language (p<.05). High-functioning autistic residents seem to lose the desire to masturbate the older they become, contrary to low-functioning residents. A clear picture emerges when the ability to reach orgasm is compared to frequency of masturbation. Those residents who masturbate most frequently are able to reach orgasm more often. Of those who masturbate rarely, only 40% are able to reach orgasm which 80%-90% of those masturbating daily are able to reach orgasm (p<.001)
Masturbation in public and the use of objects
The data also include details of where residents masturbate. 29 people (53% of those who masturbate) do so in “public”, i.e. in a living room or outdoors. Some residents begin to masturbate when they are undressed, e.g. when visiting public swimming baths. One male resident becomes excited at the sight of a fair-haired girl and begins to masturbate wherever he happens to be at the time. Another can pull down his trousers in the middle of the street in order to stimulate his genitals.
The results reveal a tendency for females to masturbate more in public than males. A more pronounced trend can be obtained by splitting up the subjects according to their spoken language proficiency, in that 90% of subjects with no spoken language masturbate in public while 47% of the remainder do so.
With regard to the use of objects in connection with masturbation, it was found that 17 (31% of residents who masturbated) used objects in order to stimulate their genitals. Such an object could, for example, be a pillow pushed tight between the thighs. Many residents used pots, dustpans or other hard objects. A male resident used a belt to rub his penis with. Some used the shower head when they took a bath. One female resident used a vibrator which she had learned how to use. There seems to be no difference between the sexes on the question of the use of objects in connection with masturbation.
Table 3: Masturbation in public and the use of objects (percentages)
…………….masturbation in public………use of objects to masturbate with Men…………………….45………………………………………29
Women……………….77………………………………………39
Total……………………53………………………………………31
Spoken language
None……………………………90
Little/fair/good………………47
The entire data have also been processed with the purpose of obtaining a more qualitative assessment of each individual’s sexuality regarding masturbation. The results show that:
• 1 had physiological problems with his genitals which prevented him from masturbating.
• 5 suffered from erection problems.
• 22 were unable to reach ejaculation or climax in spite of repeated attempts to masturbate.
• In 7 cases the staff reported that the resident used an appropriate masturbation technique. 4 ran a risk of hurting themselves and 3 were not able to reach their orgasm.
• 14 residents masturbate several times a day. This may not necessarily be a sexual problem unless it has a disturbing effect on the resident himself. It could, however, also be due to the fact that the resident is unable to achieve orgasm.
In other cases, problems may arise because the resident is able to satisfy his or her sexual needs only under special but inappropriate circumstances, for example, a male resident who becomes sexually aroused by the exhaust from a car.
Person-oriented sexual behaviour.
Person-oriented sexual behaviour was split into 3 categories:
A) Definite signs
B) Indefinite signs, and
C) No signs of sexual behaviour directed at others
A definite sign could be resident sitting on the lap of a female member of staff and beginning to masturbate or, for example by touching the staff member’s breasts and becoming aroused. Another example might be that of a resident touching the backsides of small children while rubbing his penis.
A indefinite sigh might be the resident who sits on someone’s lap in an ingratiating and loveable manner but who shows no sign of sexual arousal.
Some residents who display no sighs of sexual behaviour directed towards others are capable of masturbating. In other cases, the person in question may be withdrawn and passive and show no signs of sexual desire.
If the 81 subjects in the survey, 34 (42%) displayed definite signs, 23 (28%) displayed indefinite signs, and 21 (26%) displayed no signs. 3 cases were not determined. No significant differences were ascertained between the sexes with regard to the 3 categories.
Figure 1 shows a comparison between the functional level of the subjects and their person-oriented sexuality. Of subjects with a low functional level, 27% displayed definite signs of person-oriented sexuality. The percentage increases to 55% among subjects with a high functional level.
Figure 1: Definite signs of person-oriented sexuality and functional level
TABLE HERE
A similar connection was confirmed between spoken language proficiency and social behaviour in general when compared with the “holding hands” behaviour category. In this report this behaviour is taken as an indefinite sign of person-oriented sexual behaviour. While none of the low-functioning subjects wanted to hold hands, 48% of those with high-functional level enjoyed doing so (p<.001).
Of the 34 subjects directing their social contact towards others (definite signs), 14 did so exclusively towards the opposite sex, 12 did so towards both sexes and only 3 always chose persons of their own sex. 5 cases were not determined. 12 subjects directed their sexual behaviour towards one chosen person. This often implies that a resident has a preference among the staff members with whom he or she seeks intimate physical contact and that the gesture is never returned. The preference can, however, also be for another handicapped person or a normal peer.
Residents can direct their sexual or physical contact behaviour towards people who have no interest whatsoever in entering into a sexual relationship. These will typically be staff members, other parents, visiting strangers or people whom the resident simply happens to meet. There were some cases of sexual attraction to smaller children in which the resident wanted to feel the child’s backside or stroke its hair while he or she became sexually aroused. Of the 34 residents displaying person-oriented sexual or other physical contact seeking behaviour, 30 directed their attentions towards such unobtainable people.
The functional level and developmental age of the residents seems to determine to whom they direct their sexual attention. As shown in figure 2, 75% of high-functioning subjects directed their sexual behaviour exclusively towards the opposite sex. This applies to only 27% of residents with a fair functional level and not at all to low-functioning subjects. As illustrated in figure 3, it was found that the tendency to seek contact with a chosen person increases from 9% of residents with a developmental age under 3.0 years to 42% of those with a developmental age of 6.5 years and above.
Figure 2: Heterosexuality and functional level
TABLE
Figure 3: Chosen persons and development age.
TABLE
The connection between sexual behaviour directed towards others and behavioural problems was examined with the following two striking results.
1. The frequency of self-destructive behaviour is constantly high for residents with no or little spoken language. In residents with fair or good spoken language, the frequency of self-destructive behaviour increases specifically in those displaying signs of person-oriented sexual behaviour (p<0.01).
2. Residents wishing to kiss and hug show a greater tendency towards aggressive behaviour. For example, 23% of the residents who are never aggressive have the desire to kiss and hug while 60% of those residents frequently displaying aggressive behaviour have such a desire (p<.05).
These correlations may reflect the frustrations which stem from being shunned. With this in mind, staff members were asked about the reasons why physical contact between residents and others can cease.
In 1.4% of cases the reason was that the resident had reached orgasm or had successful intercourse. This applies to 2 residents. One was a man who ejaculated and cried out “this is one big orgasm!” while hugging a female member of staff for a moment. The other was a female resident who had sexual intercourse with a normal boy of her own age who exploited her provocative impulse. In 50% of cases the reason was that the subject had been stopped or shunned by the other person. In 41% the reason was that the subject had voluntarily withdrawn from the sexual contact. In 7% of cases there were other reasons.
A striking difference between the behaviour of male and female residents can be seen by comparing data about masturbation and definite signs of sexual behaviour directed towards other people. Considerably more men (20%) than women (4%) exclusively masturbate (p<.05).
The use of objects, materials and other stimuli
A third main area of the survey was to examine how objects and other stimuli are involved in the sexual arousal phase or are used as part of the sexual activity itself. These can be sensory stimuli such as the scent of perfume, bodily smells (from the armpits or crutch), or more deviant-like stimuli such as cigar smoke or the smell from diesel engines. They can be the sight of children’s backsides or pictures of naked women. Materials and objects such as dirty underpants, women’s clothes, rubber gloves, lamps, pots etc. can also play a role. Sometimes the stimulus is a person or parts of a person’s body (hair, bare arms, breasts). This can be the case if the sexual excitement phase is provoked by a chosen or particular person. For some subjects, objects and other stimuli seem to be inseparable elements of their sexual behaviour. It may, for example, be an absolute necessity for the resident to be subject to these stimuli throughout the act of masturbation in order to reach orgasm.
Some residents used objects to stimulate their genitals (belts, plastic objects such as pots or dustpans, metal objects etc.) instead of their hands or fingers. In other cases, objects/stimuli were simply a catalyst whose presence during the sexual activity itself was not necessary. Finally, a number of cases were recorded in which ritual patterns needed to be established in order to awake the sexual desire of the resident. An example here is a resident who wants a staff member to smoke a particular brand of cigarette in front of him, after which the resident retires to his room and masturbates. Another example can be a resident who masturbates only at a certain time of day or only in one particular place.
In many cases, this use of specific objects and other stimuli can reflect recognisable elements of normal sexuality. In other cases, however, it can involve incomprehensible or bizarre elements. It was found that the sexuality of 15 (62%) of the total female residents and that of 43 men (75%) was connected to stimuli/objects in this way. A closer analysis of the use of objects and other stimuli shows that it is more pronounced in the group which masturbates most frequently. Likewise, those who use objects and other stimuli reach orgasm more frequently (p<.01). There was also a close connection between the use of objects and other stimuli and person-oriented sexuality. Of residents displaying definite signs, 82% had used objects and other stimuli while only 52% displaying indefinite signs did so (p<.001).
Finally, 8 persons in the entire subject group – 4 men and 4 women – displayed no signs of sexual activity at all. This group is characteristic in being low- to fair- functioning with a moderate to severe degree of autism. Another conspicuous group consists of those who have or would like a boy- or girlfriend. These residents – 5 women and 4 men – all have a high functional level and mild to moderate degrees of autism.
Discussion.
The main results in this survey provide new and valuable information and understanding about sexuality and autism. Five hypotheses were advanced with regard to the results.
Hypothesis 1:
Sexual behaviour is a common occurrence among people with autism.
This hypothesis was confirmed by showing that 74% of all the autistic residents demonstrated definite signs of sexual behaviour, either in the form of masturbation or by sexual behaviour towards others. The frequency of masturbation varies according to age and sex. Among the autistic residents, 73% of the males masturbate compared to 54% of the female residents. Among the normal population, recent investigations have shown that the frequency of masturbation ranges from 58% in boys and 39% in girls during the teenage years, to 93% males and 75% females who masturbate upon reaching adulthood. (Hertoft, 1987; Masters & Johnson, 1988). With regard to the number of times normal people masturbate, studies show that youngsters do so from one to many times a day, decreasing to about once a week during adulthood (Hertoft, 1987). In this survey, a similar tendency is seen in that the autistic youngsters masturbate more often than the older residents
These results suggest that a majority of autistic persons are able to learn to masturbate without help from others, if they do it frequently enough. Some subjects may, however, give up because they fail to learn how to masturbate or because staff members may intervene due to the fact that they masturbate in inappropriate situations or in an inappropriate manner. Such behaviour can include masturbating in the living room while others are present or using hard objects.
39% of male and 47% of female residents show definite signs of sexual behaviour towards others. When indefinite signs are included, such as kissing, hugging and holding hands. 68% males and 73% of the females display this form of sexual behaviour. Apart from one or two residents, sexual relationships among autistic people are a one-sided affair. This is illustrated by the fact that when autistic people direct their sexual desire towards others, the sexual contact is terminated immediately after the contact is initiated.
Sexual contact between normal youngsters is common. According to a study in the USA about 40 to 80% of normal teenagers show petting behaviour (Masters and Johnson, 1988). In Denmark, about 60% of youngsters have had their first experience with sexual intercourse before the age of 18, and just under 100% before the age of 25 (Hertoft, 1987). In this study, only one autistic person, a female, had had sexual. While this girl was willing, the normal teenager involved clearly took advantage of her. While this survey indicates that autistic people satisfy their sexual needs exclusively by masturbating and not through sexual contact with others, many autistic people reveal a strong interest and desire for intimate contact with other people.
Hypothesis 2:
Sexual behaviour is often expressed in an inappropriate way for the surroundings and the autistic people themselves
Our survey also confirms this hypothesis in that 52% of the residents masturbate in public. In addition, 90% of those who show definite signs of sexual behaviour towards others, choose people who are not interested in responding to their sexual overtures (parents, staff members, strangers and younger children). Inappropriate behaviour of this nature, often results in the necessity of the staff member intervening by setting limits and having the residents under constant control. The problems which characterise autism, when seen in relation to sexual behaviour, indicate that autistic people have extreme difficulty in perceiving, understanding and learning the norms and social rules of how to relate to others.
Hypotheses 3:
Sexual behaviour is expressed in a deviant and bizarre way in relation to the accepted norm.
The results of the survey give detailed information of the autistic person’s use of stimuli, objects and techniques with regard to masturbation. The sexual attitudes and behaviour of normal people often show a wide variety of apparently deviant sexual patterns such as exhibitionism, fetishism and voyeurism etc. For example, Jöhansen (1988) reports that normal people also use some form of fetishism with regard to their sexual desires. In this respect, the sexuality of the normal population can indeed appear more deviant and bizarre with autistic people.
The differences between autistic and normal people can be seen in three ways:
1) People with autism, with the exception of the group categorised as high-functioning, do not conceal their sexual desires and behaviour.
2) The percentage of autistic people who use specific stimuli and objects for sexual arousal and which usually are not associated with sexuality, is high. For example, of the persons who masturbate, 90% use a specific stimulus or object, including 17 residents who use an object to masturbate with, 47 who use visual, auditive or tactile stimuli for sexual arousal, 23 who use a particular object for sexual arousal and 23 who have chosen a specific person or a part of the person, for sexual arousal.
3) Some residents invent special rituals for their sexual needs. For example, a 25 year old autistic man relates how he selects plastic figures which he talks to when he masturbates. He uses different figures on different days of the week.,
Hypothesis 4:
Behavioural problems occur in connection with unresolved sexual problems.
Aggressive and self-mutilating behaviour occurred in only 3 to 5 autistic people in direct conjunction with the sexual behaviour. For example, one resident bit a staff member’s breast while he was sexually aroused, while another hit his penis hard when he got an erection. The residents with a fair to good spoken language, who also have definite signs of sexual behaviour towards others, have a high frequency of self-destructive behaviour. Such behaviour can be interpreted as a reaction of rejection, because the other person does not respond positively.
Self destructive behaviour among the low-functioning autistic residents is rather the result of problems with communication than directly related to frustration of their sexual drives. The residents who show a general interest in intimate contact, in the form of kissing and hugging, have a tendency to be aggressive towards others. This phenomenon can be interpreted as a vicious cycle, where intimate contact is met with rejection. This in turn triggers aggressive behaviour, which again reinforces frustration and so on. Anti-psychotic medicine is primarily given to residents with aggressive and self-destructive behaviour. Furthermore, the results from this survey suggest that behavioural problems, unresolved sexual problems and the use of anti-psychotic medicine are closely related. In this respect, one can assume a negative, self-reinforcing chain of behavioural events.
Hypotheses 5:
Autistic people are unable to establish or have difficulty in establishing a sexual relationship.
Of the 8 residents who expressed a strong desire to have a boyfriend or girl-friend, only one resident, a female, had an intimate relationship, which did not include sexual interplay. Another female autistic resident had one single sexual experience, where a normal teenager misused her to satisfy his sexual needs. Of the remaining 32 residents who directed their sexual desires towards others, none were able to establish a reciprocal and intimate relationship. On the contrary, a multitude of problems arises, including self-destructive and aggressive behaviour, when the other person does not respond positively towards the autistic person’s sexual behaviour.
When sexuality is directed towards others, 12 (35%) of the autistic residents express sexual interest in both sexes, while only 3 (9%) show interest in persons of the same sex. In the normal population, bisexuality during childhood and the preadolescent years is common, decreasing to about 5% of the population upon reaching adulthood. Homosexuality occurs in about 2-4$ of the normal population (Masters & Johnson, 1988).
Sexuality and developmental level
The results were also evaluated in relation to the autistic persons’ developmental age, functional level and spoken language proficiency, categorising the subjects in low-functioning, moderate functioning and high-functioning groups.
Low functioning group
In the low-functioning group where the functional level by definition is low, spoken language is absent or limited and the developmental age is between 1.5 to 4 years, the following tendencies are noted:
1. Masturbation is the most common form of sexual behaviour.
2. The residents often masturbate in public, without being concerned about other people’s reaction.
3. The residents often use specific objects and other stimuli to get sexually aroused, while masturbating and when trying to reach their orgasm.
4. The residents frequently masturbate and have a good chance of reaching their orgasm, if and when they masturbate in acceptable physical settings, rather than in public.
5. Some residents need to use a particular object when masturbating. Some of these objects can be harmful.
6. Some of the residents use other people for sexual stimulation, particularly certain parts of their body (hair, feet etc). often without distinguishing between sexes or the relationship they have to the person (parents, strangers etc.)
In many respects, the sexual behaviour of the low-functioning group can be compared with that of 3 to 5 year old normal children. Normal children can display sexual behaviour such as, stimulating their genitals in public, not distinguishing between sexes during sexual play and using their parents as sexual objects. Actually fetishism, which is common among the low-functioning autistic group, is also common among 3 year-old normal children (Langfeldt, 1986)
Moderate-functioning group
This group’s functional level and spoken language proficiency is fair and the developmental age is between 4.1 to 5.4 years The following tendencies characterise this group.
1. The frequency of masturbation is less, and the majority of the residents that masturbate also reach their orgasm.
2. While some masturbate in public, many do not.
3. The use of particular objects and other stimuli for sexual arousal is considerable, but only a few of the residents use objects to masturbate with.
4. A comparatively high percentage direct their sexual behaviour towards others, but their are often more selective, choosing certain persons of the opposite sex.
The sexual behaviour of the moderate-functioning group can be compared to that of normal children at the kindergarten age level. Among the kindergarten children, touching of the genitals is also common, sexual role playing becomes more elaborate, including doctor play, and daddy, Mommy and baby play. Just like the kindergarten child, the autistic person in this group can encourage the staff member or parent to look at their erect penis or the female resident’s breasts, or take the hand of another person and lead it towards the clitoris or penis, with the desire to be touched.
High Functioning group.
This group has a high functional level, fair to good spoken language and a developmental age of 5.4 years or over. It displays the following tendencies:
1. They conceal their sexual behaviour, by masturbating in private, rather than in public.
2. Their sexual behaviour towards others is limited to one particular person, often a staff member of the opposite sex.
3. A desire to find a boyfriend or girlfriend is common.
4. Some residents, particularly the older ones, gradually lose an interest in masturbating.
The most apparent similarity when comparing the high-functioning autistic person to, for example, normal teenagers, is their desire to establish an intimate relationship primarily with a person of the opposite sex. On the other hand, they are not able to establish and manage an intimate and sexual relationship.
Differences between the sexes
This survey also gives valuable information about the differences between the sexes.
For the first, autistic males masturbate more frequently and reach their orgasm more easily in comparison with autistic females. Autistic males masturbate more than twice as frequently as autistic females. As mentioned previously, it is reported that among the normal population, men also masturbate more often than women (Hertoft, 1987)
For the second, more female than male residents masturbate in public. The staff members in this survey are predominantly women, suggesting that female staff members are more tolerant of inappropriate social behaviour among female residents. Another possible interpretation is that inappropriate sexual behaviour among autistic men is more likely to be offensive to female staff members,
. For the third, more females than males use objects and other stimuli in connection with masturbation.
Finally, when comparing the relationship between masturbation and sexual behaviour towards others, the results show that 11 males (20%) masturbate, in contrast to merely 1 autistic female (4%). This finding suggests that autistic females who openly express their sexual desires are more likely to direct their sexual behaviour towards others, than is the case with the autistic male members.
Understanding the autistic person’s sexuality.
The social and communicative disorders which in the early life of autistic people prevent them from establishing and developing relationships, lead later in life towards a total absence of sexual and intimate relationships with others. Autistic youngsters and adults simply do not have the necessary social and communicative skills to establish such relationships. Thus, while high-functioning autistic persons desire a boyfriend or girlfriend, they essentially give up at one time or another because they are unable to obtain intimate experiences with other people. A 36 year old autistic man who is obsessed with finding a girlfriend has travelled all over Denmark taking photographs of street signs with women’s names which he collects in an album.
In this respect, autistic people differ considerably from persons who are mentally retarded. In a Japanese study comprising 92 moderately retarded people, 59% wanted to get married and 29% had an intimate relationship. (Yamashita, 1990). As we mentioned previously, two major follow-up studies comprising a total of 159 autistic adults (Kanner, 1972; Rutter, 1970) reported no cases of marriage or intimate relationships and only very few cases of friendships.
Many schizophrenic people also give up having an active sexual life because of their difficulties in establishing intimate relationships (Hertoft, 1987). They can also show signs of promiscuity, violent behaviour and uninhibited sexual behaviour towards others. In addition, they can demonstrate sexual identity problems which can lead to anxiety about becoming homosexual.
This survey has also shown that autistic persons often use objects and other stimuli for sexual arousal, while masturbating and when trying to reach an orgasm. This type of sexual behaviour can be interpreted as the autistic person’s lack to ability to imagine things. In the early years, this lack of ability leads to the development of ritualistic and stereotype behaviour. Later in life, the autistic person finds it difficult or impossible to evoke and maintain a specific imagery for sexual arousal. Thus, in order to arouse and maintain the sexual desire, the autistic person usually needs a specific visible stimulus or has to use a particular object while masturbating.
One autistic young man had to have a raincoat on before proceeding to masturbate. At first, the staff member removed the raincoat, resulting in the immediate loss of erection and the young man would react by hitting himself hard on the side of his head. Only when he was allowed to keep the raincoat on, while he masturbated, was he able to satisfy his sexual desire. When the parents removed rubber galoshes from their 17 year old son on one occasion, he went outside practically naked in the middle of the night to visit the local shoe store to find another pair. This young man had a ritual of putting on a pair of rubber galoshes while he masturbated. Another young man became extremely aroused by the smoke when a staff member lit a cigarette.
Objects and stimuli such as a raincoat, plastic figures, rubber galoshes and other objects can be seen as a way in which autistic persons evoke, retain and satisfy their sexual needs.
These particular objects and other stimuli can be considered as substitutes for the autistic person’s lack of ability to imagine situations which are sexually arousing. It is common for normal people to use their imagination and have sexual fantasies while masturbating. Even though many of the objects and stimuli that autistic persons choose appear to be strange, it is understandable that they use these objects and other stimuli in their sexual behaviour.
Some high-functioning autistic persons who have some imaginative ability use it in a different and concrete manner. For example, an autistic man told a staff member that he would like to have an orgasm, but he did not dare because every time he started to masturbate, the excitement triggered fantasies which scared him. Another man did not dare ejaculate because this made him think of the thousands of children who would never be born.
A 27 year old, high-functioning autistic young man thought of a particular girl while he masturbated. He imagined himself holding her around the waist while he masturbated. He said “It’s a nice feeling thinking of her while I touch my penis.” He was convinced that this girl loved him, even though he had never spoken to her about it, and in spite of the fact that the girl was happily married and had three children.
In concluding, sexual behaviour of autistic behaviour is neither deviant nor disturbed but rather an expression of social and emotional immaturity. In fact, autistic people develop inappropriate sexual behaviour because of their inability to understand social norms and rules and because of their inability in communicating and establishing reciprocal relationships. At the same time, their difficulty in imagining things gives rise to the need for specific objects and other stimuli as a means of satisfying their sexual needs.
Attitudes and experiences of staff members
The following is a brief review of the results of the staff members’ attitudes and experiences with regard to the sexuality of people with autism and other handicapped groups. The information was gathered by interviewing each staff member who participated in the survey
1. In general, the staff members expressed open and accepting attitudes towards the autistic person’s rights to have a sexual life in accordance with their needs. For example, 79 of the 81 interviewed pedagogues were positive with regard to autistic people masturbating, while 30 were positive about the idea of the autistic person having a sexual relationship. However, these attitudes were in sharp contrast to what the staff members considered realistic. While 79 pedagogues viewed autistic people learning to masturbate as realistic, only 3 of the 81 responded positively to the question of whether it was realistic for an autistic resident to establish a sexual relationship. In fact, only 13 considered it realistic for their autistic resident to develop a friendship.
2. 52 of the 81 pedagogues had participated in conferences on sexuality and 49 had read the guideline proposed by the Social Ministry, while only a small number of staff members conducted a systematic description and analysis of sexual problems among handicapped people. Inappropriate intervention of sexual problems is likely to occur when an assessment of a sexual problem is not performed. The description and analysis of the resident’s sexual needs, behaviour and problems should be a natural part of the assessment procedure, just like other developmental and behaviour areas.
3. The attitudes of the staff members, with regard to providing active support and guidance to residents who have sexual problems are generally positive. For example, the survey shows that 66 of the staff members are willing to provide verbal instruction to problems of masturbation. With regard to sexual training, 28 of the staff members are willing to use instruments, such as a vibrator, and 22 are willing to give direct physical support by holding the autistic person’s hand while he or she masturbates, but only on condition that the autistic person is of the same sex as the staff member. On the other hand, the majority of the interviewed staff members have limited experience, meaning that only 6 staff members have been directly involved in giving physical support to a handicapped person (in 2 cases, people with autism), while 20 staff members have given verbal instruction to handicapped people with regard to learning how to masturbate. Common taboos reflect the staff members’ difficulties in finding their own point of reference with regard to sexuality, and prevent them from giving the necessary support and guidance.
Before staff members can give guidance, it is important for them to be psychologically prepared. Such a process can include how one reacts and feels about sexuality in general and becoming aware of one’s own emotions when relating to the handicapped person in need of help. Therefore, it is important to talk openly about one’s own boundaries, anxieties and uncertainties before deciding to provide active help and guidance. It is important to emphasise that any kind of sexual instruction and training can be performed if the staff member follows the guidelines provided by the Social Ministry. These are described later.
Sexual Instruction and Training.
On the basis of this survey, as well as the authors’ clinical experiences, we propose that when intervention is to be effectuated regarding an unresolved sexual problem, the following aspects should be included.
1. Viewpoint, policies and ethics.
2. Penal laws and regulations.
3. Preparation of a plan for approval.
4. An assessment of the unresolved sexual problem.
5. Strategies and methods for sexual instruction and training.
Viewpoint, policies and ethics.
An essential aspect to sexual instruction and training is to clarify one’s viewpoint about autism and define specific attitudes and policies in relation to sexuality. A general viewpoint about people with autism can be formulated as follows:
“While we may demand that people with autism should respect certain rules and norms of society, we must also respect the person’s individual style. We must not view with autism merely as deviant – or as suffering from a handicap which has to be alleviated. We should not strive to have them fit into our way of thinking, feeling or fulfilling our wishes, hopes and ambitions. While their way of living life may be different, it is not “wrong”. Therefore, we should not force them to live a life like ours, but give them the possibility of learning from us, just as we should try to understand and learn from them”. (Haracopos, 1988).
Seen in relation to sexuality, it is important to recognise that in our efforts to support the autistic person to satisfy their sexual desires and needs, it is crucial to make a clear distinction between our expectations, norms and ambitions and what the autistic person realistically can manage. Among professionals who work with people with autism, one can meet many different attitudes about sexuality. Some will refuse to take a standpoint and turn their back on the problem at hand. Others might direct the autistic person to his or her room, when he or she is sexually aroused, without trying to understand the problem. At worst, some people might be too prejudiced without showing recognition of and concern for the individual’s sexual needs and desires. In other cases, professionals may be too accepting towards the person’s sexual needs and desires.
Considerations and decisions concerning strategies and methods for sexual instruction and training should be founded on clearly defined policies:
1. People with autism should have the right and possibility of having a sexual life in accordance with their desires and needs and what they can manage.
2. people with autism have the right to receive guidance and support, with regard to unresolved sexual problems.
3. The learning of appropriate social behaviour with regard to sexuality should occur in agreement with the social rules and norms of the autistic person’s place of residence.
4. The type of guidance should, first of all, be related to and dependent on how demanding and obvious the sexual problem is for the autistic resident and the environment. It is then important to determine and assess if the sexual signs are definite, indefinite or not present.
a. When the person has definite signs of sexual behaviour consisting of an unresolved sexual problem, then the environment has an obligation to direct its attention to the problem at hand.
b. If the person shows indefinite signs of sexual behaviour, further observation and information should be gathered in order to determine whether or not these concern an unresolved sexual problem.
c. If the autistic person shows no signs of sexual behaviour, the environment should not deliberately stimulate the sexual drive.
5. Sexuality should be viewed in a global context, so that sexual instruction and training do not only consist of helping the autistic person to learn how to masturbate and reach his orgasm. It is equally important to enhance the resident’s body awareness and to support him or her in understanding their physical and emotional changes in relation to the sexual drive. For example, discovering and stimulating the body can occur through activities such as exercises and body care or looking at oneself naked in the mirror. These experiences can enhance the autistic person’s chances of enjoying the act of masturbation and reaching an orgasm. After reaching an orgasm, the residents can receive help in relaxing and expressing their feelings in relation to the sexual experience.
6. When an autistic person directs his or her sexual interest towards another person, one should decide how far to go in supporting such a contact. Since experiencing sexuality with another person consists of showing tenderness, care and empathy, one must recognise that the majority of people with autism have extreme difficulty relating to other people. While it may be necessary to set clear limits for the autistic person’s sexual interest towards others, one should be cautious not to be too influenced by categorical statements regarding the autistic person’s inability to establish intimate relationships. This is particularly apparent among the high-functioning group who unfortunately experience failures in their experiences with the opposite sex. Methods of treatment are still under development and it is possible that concentrated efforts might, in the future, lead to some autistic people being able to manage and enjoy intimate relationships.
Penal laws and regulations.
Penal laws and regulations have often been seen as a barrier as far as sexual instruction and training are considered. In relation to the publication of “Sexuality – regardless of the handicap” (1989, the Social Ministry approached the Ministry of Justice so that useful guidelines could be proposed in accordance with the existing penal laws and regulations about sexuality.
Sexual instruction and training of people with extensive physical and mental handicaps who live in group homes or institutions should occur within adequate and secure physical settings, and in agreement with the residents, the staff members and the handicapped person’s family. The following guidelines and regulations have been stipulated by the Social Ministry in order to ensure that these conditions are met:
a. An approved plan (as described in the following section) should always be followed.
b. Sexual instruction and training should never be executed if the resident rejects them.
c. Sexual intercourse, oral sex or anal sex between the resident and a staff member can never be justified as part of sexual instruction or training. The same regulations are applicable with regard to other forms of sexual behaviour, where the staff member functions as a sexual partner.
d. Sexual training must never be put into practice with children under 15 years of age although verbal instruction is permissible.
e. Sexual training should be limited to helping the resident to masturbate or helping two residents who want to have sexual intercourse with each other.
f. Sexual training which does not follow an approved plan is not legal, even with the consent of a resident under 18 years of age or a mentally handicapped person over 18 years of age. (Social Ministry, 1989)
It is important to emphasise, that the above mentioned guidelines are only concerned with the question of the penal laws and regulations with regard to helping people with physical and mental handicaps. Thus, the penal laws and regulations are not alone in determining how far it is justifiable and appropriate to go with regard to sexual instruction and training of people with a handicap. The planning of an effective sexual training programme should occur in conjunction with what is realistic and desirable for the handicapped person, and what is feasible in relation to the social rules and norms of the group home as well as the staff members’ attitudes, interests and qualifications.
An approved plan
As mentioned in the section on penal laws and regulations, it is mandatory that a plan is prepared for approval as described below.
1. Systematic analysis of the resident’s sexual behaviour should be performed, so that the resident’s needs are the result of an unresolved sexual problem.
2. A plan for sexual instruction and training should be proposed in order to help satisfy their sexual needs and, whenever possible, to teach them to satisfy these needs themselves.
3. Before the plan is effectuated, it should be discussed and approved by the professional team as well as by other involved persons, thereby avoiding unnecessary criticism and erroneous suspicion from others. With regard to this item, it is the authors’ conviction, that a sexual training programme should always be formulated in writing and approved by all those involved. Parents should be involved, even though the parents may no longer have the legal custody of their son and daughter.
4. The plan should be presented to and accepted by the resident so that the sexual training is done in complete agreement with the resident. It is also the author’s conviction that in those cases where the resident is unable to express his or her wishes, one must be aware and considerate of the resident’s reaction to the sexual training.
Assessment of the unresolved sexual problem
In conjunction with decisions regarding sexual instruction and training, it is crucial to conduct a precise description and analysis of the unresolved sexual problem. The assessment should consist primarily of what happens before, during and after the sexual behaviour. The following aspects should be included in such an assessment:
1. Signs of sexual behaviour
One of the purposes of the assessment is to determine if the sexual signs are definite or not present.
2. Towards whom or what the sexual desire is directed:
a) The person himself, e.g. through touching and stimulation of the genitals, breasts and other sexually stimulating parts of the body.
b) Other people: Describe whether the sexual desire is directed towards many people or the same people; towards known people or strangers; towards the opposite or the same sex.
c) Materials, objects and other stimuli; Describe whether the person chooses particular objects or other stimuli in his attempt to arouse and satisfy his sexual desire. These things can include pictures of naked women or men, a doll, hard objects, a pillow etc.
3. What stimulates the sexual drive?
Stimuli which can arouse the sexual drive can be internal or external. Examples of inner stimuli are fantasies, specific ideas, and imagery, recall of previous experiences etc. Such arousal factors can only be determined if the person talks about them to others. As mentioned previously, the ability to imagine is almost only present among high-functioning autistic persons. External stimuli can consist of pictures, objects, actions, particular persons or parts of the person’s body. Sensory stimulation can include touching ones body or kissing another person.
4. Describe the behaviour when the person is sexually aroused.
Here, one should take into account in which situations the sexual behaviour occurs. Does the sexual behaviour happen in specific places, during particular activities, periods of time during the day or week, or in the presence of specific, people, In addition, one should describe the person’s bodily expressions, communication and their emotional state. For example, us the person open, joyful, relaxed or hyperactive, tensed, aggressive, anxious?
5. Frequency, length of time and intensity.
One should determine how often the person shows the particular sexual behaviour, how long he/she is preoccupied with it, and whether the sexual behaviour is expressed in a mild, moderate or intense manner.
6. How do other react towards the sexual behaviour?
Do others react by being passive, giving verbal instructions or by intervening in an active and direct manner? Which possible methods and strategies can be used to help the person satisfy his or her sexual needs and desires? At the same time, one should describe the attitudes and the underlying motives of the involved persons. Do they show acceptance, are they supportive and/or corrective or do they find it necessary to set limits? Do they feel at ease, uncertain, anxious or provoked?
7. Physiological and psychological states.
Finally, one should assess the physiological and psychological states after the sexual activity has ended. With regard to the physiological state, it is important to determine whether the person has reached his orgasm or climax. A description of the psychological state could include whether the person appears happy, satisfied, relaxed or sad, frustrated, angry, anxious.
The above mentioned aspects are used to pinpoint the target sexual behaviour or problem so that appropriate strategies for and methods of intervention can be implemented. Strategies for and methods of intervention will be described in the final report.
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