Socio-sexual development of people with autism

(Based on a presentation given at an Inge Wakehurst Trust study weekend, Nov 1993)

Introduction

As the name suggests the autistic continuum covers a wide range of personal potential and development. This paper has been written to address the potential and development most commonly found amongst people with autism who are provided for in mainstream services for people with learning disabilities.

In 1971 the United Nations adopted a Declaration of Rights for people with learning disabilities which stated that: The mentally retarded person has the same basic rights as other citizens of the same country and same age. This statement was the foundation stone of the principles of normalisation that have governed the development of good care practice in recent years and led to the adoption of the legislative framework of Care in the Community during 1993.

As long ago as 1975, Mulheren noted that a commitment to the principles of normalisation encounters severe strains in the area of sexual behaviour. Some 67% of professional staff responding to his survey felt that sexual frustration played a significant part in the difficulties that mentally retarded people experienced, yet Mitchells survey (1978) found that 31% of care staff thought that no sexual behaviour was acceptable amongst their adult clients. The Jay Report (1979) found that 25% of hospital staff and 20% of hostel staff thought that adult clients should be discouraged from developing sexual relationships.

It appears that many professional staff are sexually repressive in their attitudes. In the case of autism, is there some reason for their reluctance to accept what Ann Craft identifies in her book Sex Education and Counselling for Mentally Handicapped People (Costello), as main points in the normalisation of sexuality for adults with a learning disability?:-

1. The right to receive training in social-sexual behaviour that will open doors for social contact with people in the community.
2. The right to all the knowledge about sexuality that they can comprehend.
3. The right to enjoy love and to be loved by the opposite sex, including sexual fulfilment.
4. The right for the opportunity to express sexual impulses in the same form that are socially acceptable for others.
5. The right to birth control services which are specialised to meet their needs.
6. The right to marry.
7. The right to have a voice in whether to have children.

Adolescence

To understand the ability of people with autism to realise Ann Crafts rights it is useful to compare their development through the adolescent period, with the norm.

For the normal teenager adolescence is the period of development that we recognise as starting with puberty and continuing until the individual has become capable of functioning independently in society and taking full responsibility for his or her own actions. As far as the law is concerned, this process is completed by the age of 18. The main areas of adolescent development are:

At puberty, the child begins a rapid period of growth that sees marked changes in height and the appearance of the secondary sexual characteristics. The onset of puberty tends to occur between the ages of 10 and 14 years. Some researchers have found that there is a slight delay in the skeletal development of some people with autism, suggesting that the onset of puberty itself may be slightly delayed.

The mental processes available to adolescents to think about and understand the environment they find themselves in, appears to undergo a marked period of development during puberty. Piaget outlined the stages of conceptual development in human beings and noted the close relationship between puberty and the onset of abstract thinking.

Prior to adolescence the normal child is capable of thinking in concrete terms, needing to be able to experience something through the physical senses if they are to understand it. During adolescence the mind expands its cognitive processes, becoming capable of understanding abstract ideas.

Rutter (1970) found that 10% of people with autism in his study group showed a marked deterioration in their mental state during adolescence. In addition some 33% who had been seizure free during childhood began to experience epileptic seizures at this time.

Adolescents and adults with a combination of autism and learning disability appear to continue to function with the concrete cognitive skills of childhood. They remain unable to grasp abstract concepts and, most importantly, continue to interpret the world entirely through self.

The new cognitive skills, allied to physical development, give the normal adolescent a heightened awareness of self and an ability to understand and identify with the experiences and feelings of others. The movement of the individual, from the family into peer groups, the growth of self awareness, the experimenting with forming pairs and with pair bonding, is the bridge between the childs position as a dependent member of the family under parental control, to an adult position as an equal and independent member of society.

Many people with autism are apart from this process from the outset. An inability to make social relationships is a diagnostic criteria of the handicap, which applies to primary relationships within the family, as well as to wider relationships. Difficulty in joining social groups leaves people with autism as observers, rather than participants and beneficiaries of social interactions.

From the beginning of puberty, the normal adolescent has to learn to deal with increasingly strong sexual impulses. Research has shown (Sorensen 1972) that by the end of the adolescent period the majority of males and approximately 50% of females report that they have masturbated. Homosexual behaviour peaks during adolescence, 30% of males and 10% of females reporting some kind of homosexual interaction. By age 19, 72% of males and 57% of females report that they have experienced full sexual intercourse.

There appears to have been little research into the sexuality of people with autism. DeMyer (1979) noted that adolescents with autism in his study showed no drive towards sexual intercourse. Dewey and Everard (1974) reported that few sexual problems were observed amongst teenagers with autism. DeMyer found that 63% were masturbating and that 6% of these were masturbating frequently or all the time.

Regardless of what we do not know, it is clear that many people with autism do have a sex drive and express it through solo masturbation, exactly like the majority of adolescents.

Unlike the majority of adolescents there seems to be little sexual experimentation with others. Many people with autism remain self absorbed during adolescence, apparently disinterested in exploring their relationships with others. Where interest is displayed the social skills required to make and sustain adult socio-sexual relationships are frequently too immature to allow for success.

The reality of the peer group for people with autism

In addition to poor empathic skills many people with autism have difficulty with social timing and with social communication, problems that can make it virtually impossible for them to access a social peer group.

Unable to join in and often rejected by the group, adolescents and adults with autism are poorly rewarded for any attempts they make to copy, or respond to, the social behaviour that is going on around them; understandably, even the more able person with autism may eventually give up the attempt. Their difficulties not only deny them a place amongst their non-disabled peers, they are equally unable to find a place for themselves amongst the society of other people with learning disabilities.

If people with autism are to gain the benefits that come from social support, from a sense of belonging, and of being valued, then they will have to receive these benefits from the social groups that remain committed to them, the society of their family, professional, or voluntary carers.

Unlike other areas of personal and social need that professional and lay carers can attempt to meet, offering personal help with sexual need is impossible on legal and moral grounds. Providing surrogate sex partners may be unwise, leaving aside any other considerations it has to be remembered that many people with autism display poor social discrimination skills and may be unaware of who is available to them as a surrogate and who is not. If they cannot find their own sex partners and we cannot supply them, what can we do? After all, their position is not unknown in our society. Most of us recognise that anyone who cannot attract a social partner is denied the opportunity for a socio-sexual relationship. People with autism are not the only ones in this position. Solo masturbation is the only outlet for other people too.

Our support is needed in accepting the reality of the expression of sexual needs amongst people with autism. In addition to understanding their right to express their sexuality through solo masturbation, in the dignity of privacy, we have to accept that it is our task to teach them to use those rights responsibly, teaching the relevance of time and place.

In addition to training in the appropriate expression of sexuality through masturbation, people with autism need training to help them behave appropriately in a society that is tightly constrained by unspoken rules that govern the behaviour of people whose bodies are sexually mature.

They need, at the very least, sufficient skills to enable them to behave acceptably in open society, without triggering inappropriate or disapproving responses. It is our responsibility to find training methods that are helpful, realistic and specifically tailored to the understanding of people with autism.

One such is the Benhaven programme, designed to help adolescents with autism to comprehend the function of their adult bodies and to assist them in moving towards some appropriate and socially acceptable forms of sexual behaviour.

Melone and Lettick (1979) found that the expert on sex education who they brought in to design a programme for autistic adolescents at Benhaven, rapidly came to the opinion that his basic approach to mentally handicapped people would not work.

The retarded, while low intellectually, frequently have excellent social relatedness and good communication skills, and they can and do form warm relationships that can be normal and pleasurable. His programme was based on the expectation of educating low functioning but relating, communicating adolescents, not unrelating, uncommunicating ones. There was no way to adapt his programme to our needs

Benhaven soldiered on, the staff deciding to start with teaching parts of the body. Then the staff, baffled and disappointed by student apathy, realised something they had not anticipated - the (autistic) students were not interested.

The students relationships with others tended to be simply a tool to satisfy their own needs. What social relationships there were tended to be superficial copies of those displayed by other adults. Despite the resemblance to normal social behaviour, the pupils with autism had no real need for intimacy, nor for sharing experiences with others.

In the light of this realisation, Benhaven abandoned plans for specific sex education and replaced them with a wider framework of teaching acceptable, adult social behaviour. The programme comprises of a number of modules, commencing with one that most students with autism are familiar with, self care and personal hygiene (Sexuality and Social Awareness: A Curriculum for Moderately Autistic and/or Neurologically Impaired Individuals. Lieberman and Malone. 1980).

Sexuality is a highly personal matter the issue of sexuality requires us to examine our personal values and how they might, or might not, apply to people with autism. Because they will not form our societys traditional sexual unions, consisting of marriage and family, we must evaluate our feelings about possible alternatives, weighing the needs of people with autism against the values and morals of society. (Mesibov 1982.)

Advocates of the sexual rights of people with autism will not be offering positive help unless they accept the difficulty that people with autism have in making and sustaining the social interaction that is necessary in our society to establish a sexual relationship. To propose anything else is to suggest that people with autism should become engaged in sexual unions that have a high potential for abuse. People with autism themselves will not necessarily be the ones who are abused, since it is they who, if encouraged to pursue their own needs without social empathy, would have insufficient awareness of the needs and feelings of any partners.

Too often we wait until the person with autism has passed puberty, is already an adolescent, has become sexually mature and already has a problem. We ignore their sexuality until it will not be ignored any longer and becomes a cause for stress.

The adolescence of people with autism is less of a time of changing behaviours for them than a time of changing perceptions for us. We see them becoming physically adult, we are aware of the significance of their sexual maturity, we find it necessary to change our behaviour towards them, and we change our expectations of their behaviour.

It is widely accepted that many people with autism lack flexibility of thought and understanding. Very often what they learn appears to become set in their minds and can be hard to change. If we wish to teach people with autism how to behave as adults, it is necessary to consider how we teach them to behave as children. If we believe that one standard of social behaviour is acceptable for the child in our society and this behaviour will naturally change as the child moves into adolescence, then we are denying what we know about autistic learning processes and what we know about the deficiencies of their development during adolescence.

If children with autism are going to have difficulty in making the cognitive shifts normally related to the adolescent period; if they suffer rigidity of thought; if they cannot find the support of their own peer group; if they are most likely to remain in a dependent role in the family, then they are virtually certain to enter their adult phase of life with the understanding and behaviour that they gained as children.

Childhood is a relatively brief period, one that occupies roughly 12-15% of our lives. Despite the value that society places on the experiences and pleasures of that period, it is not the most important part of our lives. To provide a quality of life for the first 10 years at the cost of confusion and social disability that may last for the next 70 years, is obviously unwise.

If people with autism and learning disabilities cannot re-learn and adapt sufficiently to become socially adult by the end of the adolescent process, then we should consider teaching them forms of behaviour during their childhood that are appropriate to adulthood and will not have to be re-learnt.

1. Acceptable Physical Contact: Those working with the child prior to puberty should consider if the physical contact they initiate with the child is an acceptable model for the child to carry through into adulthood. There is no point in the parent or care worker teaching the child to hug and kiss if they, or their successors, are going to have to stop the adolescent doing precisely that, with minimal discrimination, later in life.

The pattern of physical contact with people outside the immediate family group, should be changed. A pat on the back, or a handshake accompanied by warm, verbal praise, is more relevant to the adult life that the child is about to enter. This might also help us to change the style of address that we use, the good boy and good girl that is often inappropriately carried over into the adult years.

2. Sex Grouping: Teaching the child to be fully aware of which gender they belong to is one of the few practical things that we can do to assist them in making the safe response in adult social situations. Activity such as boys to the window, girls to the door with suitable rewards for getting it right, can be of help. The objective should be to enable each child successfully to identify and group themselves as male or female, before society stops seeing them as just a child.

This training may challenge some of the equalities that society is keen on. Children with autism are usually capable of devastating logic. On hearing that men wear trousers, a girl with autism may look down at her jeans and decided that she is therefore a man. One does not insist that she wears a dress, just that we stop offering inadequate, confusing descriptions of what is masculine or feminine. If we cannot learn to do so, perhaps it would be better to re-adopt certain, clear stereotypes.

3. Modesty: Children with autism are not the best people to be allowed to run naked on a warm beach during the summer holidays. They have little chance of understanding the complex social rules that we use to break our usual rules and are unlikely to comprehend why the appearance of a little body hair or breast buds means that they now have to stay covered. If we are going to have to insist at that stage, why not introduce the social taboo on adult nudity earlier in life, and safely establish the correct behaviour?

Sitting correctly, learning where and when it is permissible to touch your own body and the bodies of other people, choosing the correct toilets and remembering to close the cubicle door, the list of absolute musts for adults is much longer than the list for children. If we teach or train one set of standards to the child with autism and then expect them to retrain for their adult bodies, we are predetermining that they will, at best, go through an unnecessary period of confusion and at worst, fail.

4. Naming of Body Parts: By and large the names for parts of the body stay the same for the child as for the adult. We work with children with autism who often have a fragmented comprehension of their physical identity and need to be taught that arms and legs etc. belong to, and are part of, them. However, we often avoid giving the correct name, or any name at all to the childs sex organs. We talk in embarrassed euphemisms or use one of the multitude of slang names.

Whilst it can be embarrassing to talk to a young child about their penis or their vagina, we have to remember that the embarrassment is ours; if presented with the correct word in a matter of fact manner, the child will take it in as just another name for just another part of the body. The importance of this is obvious. People with autism have difficulty with concepts, often finding it difficult to link word sound with idea. Use of the wide variety of names given to the sexual zones of the body cannot help their understanding.

Ranging from the socially embarrassing repeated touching of the genital area through the clothing to the more emotive issue of public masturbation. Over-reaction must be avoided as it is likely to make matters worse; disapproving of the behaviour carries the risk of generating anxiety, or of suppressing the behaviour, leaving the individual with no release for sexual energy.

The first positive step is to ensure that the individual does not have a health problem. Often the discomfort of a tight foreskin or a vaginal or urinary tract infection, results in behaviour that people assume to be masturbatory. If a health check finds no physical irritation, then a programme of behaviour modification should be set up. If the behaviour is a severe problem, then the help of a psychologist should be sought in designing the modification programme. The aim of the programme will not be to stop masturbation, but to approve of it where and when it is done appropriately.

It is difficult for any individual to pass judgement on the sexual drive of another. Many of us take our own level of need as a norm and assume that others have the same need. Masturbation can be judged to be excessive when the individual is making the genital region sore from repeated friction, or where the need to masturbate intrudes into his or her ability to take part in training or recreational activities.

Staff groups can be helped in dealing with excessive masturbation if they become involved in training the individual to use an appropriate place for the act. Once this is established, staff can deal with the less emotive problem that he or she is spending too much time in that place.

Setting times when the individual is free to go to bedroom or toilet to masturbate is a successful strategy. This can be very frequently at first, followed by a slow process of lengthening the periods between bedroom sessions. Wise staff will learn what are the other favourite activities and use these to lengthen the time between bedroom sessions and to encourage the individual to leave their bedroom after a period.

Both male and female may wish to masturbate but be unable to co-ordinate movement to achieve satisfaction, or may be unable to cope with the intensity of feeling prior to ejaculation/orgasm.

Inevitably such problems give rise to frustration that may become acute. They may also be the reason for what appears to be obsessive masturbation, the activity only serving to stimulate further need rather than provide satisfaction.

Some individuals may be helped by being provided with privacy and with an understanding that their masturbation is not disapproved of. Others will need practical help.

Both parents and professional staff should beware of providing that help personally. Society is judgmental about any sexual contact between parents/staff and those in their care. Where the need for help is realised, it is necessary to discuss that need with medical advisors and to ask for the help of a sex therapist.

Over-reaction to this should be avoided. It is not unknown for a person with autism who has a hand flapping mannerism to be accused of touching the breasts of female staff in corridors. This has more to do with the height of hands and the narrowness of corridors than it has to do with sex.

In cases of definite and deliberate touching, the motivation of the person with autism should be assessed. It is common for their interest to be based on watching (and hearing!) the resulting upset rather than on sexual interest. A calm response may, over time, reduce and stop the behaviour as it becomes less interesting.

This should not be confused with lack of modesty and lack of understanding of social rules. The man with autism who turns away from the urinal with his penis showing is not sexually exposing himself. He lacks modesty and understanding and needs training. It is common for males to awake from a nights sleep with an erection. This is not caused by sexual excitement but by the physical reaction to an overfull bladder. Granted the nature of male pyjamas and of dressing gowns, the erect penis may easily be displayed during the walk from bedroom to toilet. Again this is a modesty issue rather than a sexual matter and it is important that it is dealt with calmly and sympathetically.

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The Jay Report, Report of the Jay Committee. D.H.S.S. 1979.

Craft, A. Sexuality and Mental Retardation: A Review of the Literature.

Costello, Sex Education and Counselling for Mentally Handicapped People.

Sorenson Adolescent Sexuality in Contemporary America, 1972.

Piaget, J. The Psychology of Intelligence. Adams, 1966.

Kinsey, Sexual Behaviour in the Human Male. Saunders, 1948.

Sexual Behaviour in the Human Female. Saunders, 1953.

Simon and Gillies, 'Some physical characteristics of a group of psychotic children'. In: British Journal of Psychiatry 1976.

Rutter, M. Autistic Children: Infancy to Adulthood. Seminars in Psychiatry, 2(4), 1970, pp.435-450.

DeMyer, M.K. Parents and Children in Autism. Washington, DC: V.H. Winston 1979.

Dewey, M.A.and Everard, M.P. 'The near normal autistic adolescent'. In:  Journal of Autism and Childhood Schizophrenia, 4(4), 1974, pp348-356

Melone,M.B. and  Lettick, A.L. 'Sex Education at Benhaven'.  In: Autism in Adolescents and Adults edited by Eric Schopler & Gary Mesibov. New York: Plenum Press, 1983.

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Mesibov, G.B. 'Current Issues and Perspectives in Autism and Adolescence'. In: Autism in Adolescents and Adults. New York: Plenum Press, 1983.