Young People, Learning Disabilities and Sexuality

March 2000

I would like to talk about young people with learning disabilities from a particular perspective, that of an organisation that provides services for young people and adults with learning disabilities that challenge many of the preconceptions of what is most effective for this client group. Firstly we are providing psychotherapy, in itself a treatment that remains controversial when applied to young people with learning disabilities.

Secondly, the work is psychoanalytic, meaning that we do not just work with the behaviours, we also seek to explore what is underneath, through the use of such concepts as the unconscious, and the transference. There remains in this country much anxiety about the use of psychoanalytic psychotherapy with people with learning disabilities, which appears to be founded on the concept that psychoanalytic psychotherapy is primarily an intellectual activity rather than an affective one.

The work of Valerie Sinason has been pivotal in challenging this misconception, describing as it does many examples of the analytic process with learning disabled clients who are able to transcend their cognitive deficits through use of the transference. Stokes and Sinason (1992) analyse the work of the learning disability unit at the Tavistock Clinic. They make a distinction between emotional and cognitive intelligence and conclude that patients with learning disability seen at the Tavistock often have preserved emotional intelligence of a level which indicates the appropriateness of psychotherapy as a treatment.

They go on to distinguish between handicapped and non-handicapped parts of the personality, drawing on Bion's (1967) work on psychotic and non-psychotic parts of the personality. In thinking about young people with learning disabilities and working with issues of sexuality, it has been important to place this work in a slightly wider context.

Professor Sheila Hollins writes about the three central conflicts that must be faced when working with people with learning disabilities in long term psychotherapy. She calls these conflicts the "three secrets", since they are so rarely talked about with people with learning disabilities, as if to invoke them will place any therapeutic work in a less safe place. The three conflicts are: Disability, Mortality and Sexuality. The experience of having a learning disability is a complex one, placing a profound set of feelings at the heart of the psyche. From birth, and sometimes before, the sense of difference, of not being the hoped for child carries a significant resonance.

As a society we are not good at supporting parents during those times when the shock of having a child with a disability may be starting to be felt. While there are many families and parents for whom this may not be the case, where support has been available and there has been a space to think and talk about the meaning of having a child with a disability, what we have heard from our clients at Respond about those early experiences provides a less positive, more worrying picture. The gaze between mother and baby is a crucial experience for the baby through which its view of itself may be reflected back.

How much harder that is when the baby is not the healthy, so-called "normal" child that remains the idealised desire of pregnancy. Babies and children do internalise that gaze, and absorb its meaning, even when the meaning is not embedded in unconditional love, when there are elements of loss, fear or shock. In a group I run for sexual offenders, these secrets have been revealed and worked with. It took the men some months to talk about their disability, within a session where they revealed the many labels that had been attached to them, such as Mongol, idiot and spastic, labels which had been readily internalised. In a number of sessions the men have taken time to explore the reality of their births, describing themselves as "coming out of mum all wrong" and, with one young man who was describing being born with brain damage caused by foetal alcohol syndrome, "My brains were all custard."

For young people with learning disabilities there needs to exist a space in which this central secret can be held up to the light. One young man I worked with, referred for an assessment of his sexual danger to other members of his family, did not have words with which to communicate, so instead used a dolls house and its inhabitants to show me something of his early experiences. In sessions the doll's house tended to be roughly handled by this young man, to the point where I would sometimes fear it was in danger of being broken up. There was more tenderness in his use of the dolls, apart from when he came to the doll he identified as himself.

This was the smallest doll, and he carefully placed it far from the rest of the family, lying down instead of standing up. Whenever he touched it there existed the same edge of violence and aggression he had displayed in manoeuvring the house. His place in the family was marked by disability, and much of his aggression centred around his sense of himself as being overtaken by his younger siblings, none of whom had learning disabilities themselves. With each milestone they reached and that he had not, he felt usurped and furious, unable to process the sense of loss of his place as an older sibling, blocked in his ability to do anything with this murderous rage but sexualise it.

He lived most of his life with his rage being directed at himself as someone who was broken down, damaged and imperfect. The dangerous times for him were when he could no longer contain these feelings and instead projected them out into his siblings in the form of sexual assaults. Sexuality for young people with learning disabilities is often a concept accompanied by confusion and fear. On an unconscious level, there may be fantasies linked with sex and what it produces. Many clients have brought to their therapeutic work a sense of their parents' sexuality as flawed, as something that has produced something different and unknowable. Sex then becomes something that is not creative, but something that is destructive.

The many problems inherent in providing sex education to young people with learning disabilities are not all connected with the client's cognitive deficit or levels of functioning. For some clients it has a closer link with an unconscious, internalised association with sex and sexuality as something that carries a fearful charge. Professor Hollins' third secret or conflict - mortality - is similarly characterised for young people with learning disabilities by an underlying edge of fear and anxiety. This is, of course, true for most of us. Mortality is not something we often consciously choose to focus on. It is, however, harder still to think about death when the ability to think about life has been restricted.

Drawing for a moment on Respond's work with older clients, in those cases in which abuse has happened within long stay institutions, where the disclosure has only been made, for example, after twenty five years of living in a hospital before finally being moved into a small group home, I have been struck by the need for such clients to talk less about the abuse they have suffered and more about what it has been like to live their life.

The experience of living for years in a hospital when you are not ill carries with it a huge panorama of meaning. Although we are thinking primarily today about young people, it is also important to draw on the therapeutic experience of older people with learning disabilities, and the additional struggles they face later in life if no space has been created to think about their life. In thinking about working with young people with learning disabilities it is impossible to avoid issues of boundaries and the frame. The ways in which therapeutic work with this client group can most safely and productively take place.

At Respond we strive to work within a multi-agency context, recognising there can be problems with conducting psychotherapy in a vacuum. This does, of course, take us out of the mainstream psychoanalytic world into something that has more in common with the child protection field. Confidentiality is, of course, one of the most powerful issues that gets raised through working in this field. In addressing issues of sexuality we may also be unlocking disclosures about being a victim or perpetrator, or both, of abuse. Research tells us that there are around 1,000 new cases of sexual abuse each year where the victim has a learning disability.

Small wonder that so much work with young people with learning disabilities on sexuality will, by definition, have to focus on sexual abuse. In considering the three conflicts, it may be useful to think about the issue that connects them all - that of loss. The client's sense of him or herself is characterised by loss - the loss of the hoped for child, the child who is not disabled and who does not arouse the powerful feelings of failure and lack. The child's sense of themselves as someone who may be held back significantly from mastering milestones, from attaining a sense of healthy achievement.

As importantly, we are also working with the loss inherent in the client's view of their sexuality. In addition to the preciously mentioned issues connected with the unconscious view of the parents, sexuality for many young people with learning disabilities is also connected with a range of feelings which may be predominantly negative. Of course one natural response is to try to deny this negative view of sexuality, but I would suggest that to do this is also to deny the impact of the view upon the client's whole sense of self. It also prevents therapeutic work from providing a space in which the loss of a whole sense of sexuality may be mourned.

And if losses are not mourned, either practically or therapeutically, then they can become pathological, blocking the attainment of a healthy sense of self and sexuality. This is often the scenario we are working with - those young people who struggle with a strong definition of their sexuality because mourning for the unattainable has not taken place.

All of which begs the question - how do we work with these multiple losses, personified by sexuality but also present in client's view of their disability and their mortality. We have learned at Respond some fairly obvious, practical lessons, alongside less obvious ones. It is clear that working with young people on issues of sexuality will rarely be a short piece of work, touching as it does on attendants feelings of loss, disempowerment and a deep sense of confusion. It is rare in our experience for clients to feel they have internalised much that can stay with them with less than a year's therapy. The average is nearer three, although there are some clients, particularly those whose experience of abuse has been early, long lasting and perpetrated by a family member, with whom we are in the fifth year of therapy, a process that feels as if it should continue for much longer. For those clients for whom spoken words are not the primary tool of communication, there is a need to be open about what they will communicate with.

It has been important to make available to clients who do not speak a range of dolls, pens, paper, whatever will enable them to tell their story. As importantly, it has been important to pay especial attention to what is going on in the transference between therapist and client, a relationship whose vocabulary may often be a silent one. In working with the young man I described early, the client who so movingly described an early sense of emotional deprivation through his use of dolls and a doll's house, I often learnt much more about this chaos in him by being aware of the feelings present in the room when he became quieter, feelings in me which ranged from bafflement, confusion, a very alive sense of wonderment and curiosity, to what sometimes felt deadening, where by just sitting in a room with him I would feel sleepy, overwhelmed, deadened by what was sometimes his strong resistance to being with a parental authority figure who actually seemed to care about him, and what was at other times a powerful projection of his own feelings of leaden depression. I would like to finish by raising the issue of supervision in working with young people on issues of sexuality. There is, of course, a need for proper supervision whenever we work with young people, but I feel it becomes even more essential when learning disabilities are part of the diagnosis. If we are open to working with the transference, we must also be open to working with feelings of not being able to think, to feeling powerfully disabled by our clients just at the point where we think we may be gaining some understanding about their sense of their own sexuality.

It is most often the case that the three central conflicts of disability, mortality and sexuality do not present themselves in the work in neatly separated forms. They are often enmeshed, making our role as therapist one of a container of multiple set of losses, all of which need to be acknowledged, all of which need to be mourned.