Department of Psychiatry of Disability, St George's Hospital Medical School, London
Correspondence: Professor Sheila Hollins, St George's Hospital Medical School, Department of Psychiatry of Disability, Jenner Wing, Cranmer Terrace, London SW17 ORE. Tel: 020 8725 5501; Fax: 020 86721070; e-mail: s.hollins{at}sghms.ac.uk
See editorial pp.
1011, this issue.
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ABSTRACT |
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Aims To describe recent advances in understanding and practice within the learning disability field which have not received wider recognition within mainstream psychotherapy and psychiatry.
Method The availability of different psychotherapeutic approaches is discussed. We explore developmental issues including the contribution of attachment theory to our understanding, and the effects of trauma on the lives of people with learning disabilities.
Results Theoretical and clinical perspectives suggest that many therapeutic opportunities exist.
Conclusions Practitioners are encouraged to extend their therapeutic repertoire, and to report measurable outcomes.
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INTRODUCTION |
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However, there is a tendency to ascribe the emotional difficulties experienced by the individual to the disability rather than to emotional state or needs. "My sister has a tantrum and they say she is cross because she doesn't get enough pocket money. I get cross and they phone the psychiatrist", commented a learning disabled young man.
Current definitions of learning disability point to the importance of holistic approaches to understanding individual need which look at several aspects of a person's functioning within the context of their own life and relationships (World Health Organization, 1992).
Many people with learning disabilities have personality attributes and other qualities which contribute to a fulfilling life in spite of their impairments. Many others experience secondary emotional disabilities which interfere with their adjustment to life and their enjoyment of it (Sinason, 1986), and which may be symptomatic of the trauma of the original impairment.
In this paper we start by reviewing the availability of different psychotherapeutic approaches to addressing emotional and mental health problems in people with learning disabilities. Key developmental issues such as attachment formation, sexuality and mortality are examined in relation to the experiences of people with learning disabilities. Then, the experience of trauma by people with learning disabilities, and a psychotherapeutic approach to its management are explored.
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AVAILABILITY OF PSYCHOLOGICAL THERAPIES |
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A review of behavioural interventions in learning disability by Scotti et al (1991) found that they were mainly single case studies. Cognitive-behavioural therapy (CBT) has made a significant contribution to the treatment of mental health problems in the general population (such as with traumatised groups, in depression, and following abuse), and is now being developed in practice with people with learning disabilities. Lindsay (1999) discusses data for more than 50 people with moderate learning disabilities; the data show a lasting clinical effect of treatment designed to change their cognitions. Recently, cognitive-behavioural approaches have been developed to enable parents of disabled children to change unhelpful cognitive attribution patterns (Turk, 1998) and to adopt more effective coping strategies.
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DEVELOPMENTAL ISSUES |
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Diagnosis of learning disability - the family's response
At the birth of a disabled child many parents experience something akin to
grief for the perfect child who was expected. Recent studies of the effects on
attachment of an early diagnosis of learning disability suggest that
attachment is more likely to be insecure
(Esterhuyzen & Hollins,
1997). The long-term consequences for people with learning
disabilities of insecure maternal attachment probably bear similarities to
those (such as separation difficulties) described by attachment researchers
(De Zulueta, 1993;
Main, 1996;
Sausse, 1996), but may also
include challenging behaviour and pathological grief following significant
losses (Hollins & Esterhuyzen,
1997).
Attachment
Childhood attachment is a prerequisite of safety. Attachment to an adult or
adults protects children from danger while they develop the maturational
skills to care for themselves. Where a parent is unable to screen a child from
danger, or is part of a dangerous experience for a child, the child's
perception of safety and of adult protectiveness can be altered or destroyed
(Pynoos et al,
1995).
Spitz (1983) found that in an orphanage where hygiene was impeccable, toddlers who had no attachment figures were more susceptible to illness and had higher mortality rates. The infants started becoming retarded at three months, when weaning occurred and the modest human contacts they had were stopped. Some were given a better environment in their second year of life but "notwithstanding this improvement in environmental conditions, the process of deterioration proved to be progressive". Spitz (1983) described how children faced with a long period of deprivation "offer pictures reminiscent of brain-damaged individuals, of severely retarded or downright imbecile children".
We raise the question of whether this infantile depression also accounts for the visual appearance of some learning disabled children. Moreover, we consider that where there is disruption to bonding as a result of the disability, the disability itself is experienced as a trauma, both at the time it is diagnosed for the parents and at the time the child becomes cognitively aware of it.
Dependence and disability in adulthood
The extra needs of some disabled teenagers make it more difficult for them
to take the first steps towards adult life. Many parents also experience
difficulty in letting go of their disabled adult son or daughter, perhaps
because of the distorting effect on parental psychopathology of caring for a
child with different needs (Hubert,
1991).
Both CBT and psychodynamic therapy can help people to look at the internal-external dimension in their lives, and try to reconcile their inner world with the external reality which other people see. A pilot repertory grid study was conducted by one author (S.H.) with young adults with learning disabilities in group therapy. The pre-treatment grids showed a larger than expected difference between ratings for real self and ideal self. In the first year of treatment, this gap widened for some members as they confronted the reality of their learning disabilities. Most of them succeeded in closing the gap as treatment progressed (Hollins & Evered, 1990).
Sexuality
Sexual development occurs over the same period of time in everyone, but
people with learning disabilities may receive contradictory messages about
certain basic sexual matters, and also about the appropriateness or
inappropriateness of their behaviour. Developing their sexual identity, and
achieving the transitions from childhood to adolescence and from adolescence
to adulthood, are more difficult than for those without learning disability
(Sigman, 1985). Little help is
available to prepare the young person with learning disability to have an
intimate relationship or to plan to get married. This is an area of ambiguity
for staff and, even more, for their clients.
However, we know that sexual abuse of children and adults with learning disabilities is more common than it is in the rest of the population (Turk & Brown, 1993), and that some of the victims later become perpetrators of abuse. If spoken language skills are limited, it may be difficult to communicate the emotional feelings of emerging sexuality or those associated with sexual experience or sexual abuse.
Mortality
There is evidence that concepts of the universality, inevitability and
irreversibility of death are acquired later than usual in people with learning
disabilities (Harper & Wadsworth,
1993). These concepts are not made easier to acquire by exclusion
from the more concrete aspects of death and death rituals.
Clinical vignette
Three years after her husband's death, a widow was still telling her
daughter that Daddy had gone to work. Her daughter had had respite care during
the funeral rituals and had not shared in the family grieving. Later, there
were no rituals or grieving visitors that could help her daughter to
understand or to express her feelings of loss. Her repetitive questioning,
where is Dad?, could easily have been misperceived as echolalia, and
considered inappropriate. The mother hoped to protect her daughter from the
reality of her loss and assumed that she would not be deeply affected by
something which is so difficult to explain.
Psychopathology of grief
In a study of parentally bereaved adults with learning disabilities, only
about half were known to have attended the funeral of a deceased parent
(Hollins & Esterhuyzen,
1997). As a group the bereaved subjects demonstrated more
psychopathology and behavioural disturbance, including irritability, anxiety,
adjustment difficulties and depression, than the controls. Nearly
three-quarters of their carers did not attribute any behavioural change to the
bereavement. Most of us need time, perhaps many months, to grieve after a
death; follow-up of the above subjects after five years
(Bonell-Pascual et al,
1999) pointed to the likelihood of delayed and/or prolonged grief
in many people with learning disabilities, particularly those who had not had
a bereavement-related intervention.
The fear of annihilation
The unconscious fear of annihilation is exacerbated in people with learning
disabilities as a result of their facing societal and personal death-wishes
(Sinason, 1992). For example,
the casual mention of amniocentesis or abortion on television or radio may
have a traumatic impact, because it may awaken in the disabled person the
awareness that he or she might have been discarded as a result of these
procedures. Compliance, excessive smiling of a false kind, violence, and
withdrawal may be different responses to this fear.
Clinical vignette
A 40-year-old woman with autism lost three stone in weight, and seemed to
have lost the will to live. Her mother's brother had died two years earlier,
and her elderly parents were in poor health. They would not make any plans for
her future as, in common with some other older parents, they were hoping that
she would die before them. Family therapy sessions were effective in reaching
a new family view of her life opportunities and the importance to her of
concrete plans being made for her future.
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TRAUMA |
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In addition to definitions of trauma that include destruction of one's home or community, or witnessing violence, we suggest that some components apply to the experience of disability.
The current criteria for a traumatic event in DSM-IV (American Psychiatric Association, 1994) add that "the person's response involves intense fear, helplessness, or horror. In children this may be expressed instead by disorganised or agitated behaviour". Suddenness is an intrinsic component of a traumatic incident. The discovery of a baby's impairment, whether by amniocentesis, a scan or indeed at birth, has that characteristic of suddenness.
Post-traumatic stress disorder
Central to the experience of post-traumatic stress disorder for both
children and adults is the re-experiencing of the trauma through flashbacks,
recurrent intrusive distressing recollections, traumatic play, dreams and
nightmares of the event, behavioural re-enactments, and psychological and
physiological responses to triggers of the event. Avoidance and numbing of
general responsiveness are prevalent, as are memory distortions, omissions or
dissociative reactions. Symptoms of increased arousal include hypervigilance,
startle reactions, sleep disturbance and inability to concentrate. The
presence of past trauma in the present can be understood by Freud's
(1893) concept that the
psychical trauma, or rather the memory of it, is a "foreign body which
long after its entry must continue to be regarded as an agent that is still at
work".
Clinical vignette to illustrate the impact of trauma
This vignette is drawn from a weekly psychoanalytic group run by the
authors for men with moderate learning disabilities (IQ 45-65) who show
inappropriate sexual behaviour. This extract is from a session three years
after treatment began and three weeks before a Christmas break. Patient
details have been changed to avoid recognition. Group members gave verbal
consent to the reporting of a session.
We consider that traumatic symptoms are significantly under-recognised in people with learning disabilities. This short extract shows how earlier trauma was expressed through flashbacks for one man, and through an incomplete memory for another.
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DISCUSSION |
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Emotional distress or mental illness may be disguised or expressed in ways rather different from the norm, typically behaviourally. In order to make connections between feelings and behaviour, experience and skill are required to put into words what someone cannot say for themselves, along with a willingness to see whether the person can understand more than they can communicate in words. In particular, the important role of past trauma in shaping a person's interpersonal behaviour has been highlighted in this paper. We should remember that the existence of disability at birth impacts on the relationship of the individual with their family and community.
The clinician's role
Psychiatrists and other mental health professionals have a role in
understanding the continuum between social care and health care, and in
promoting healthy lifestyles which support good mental health. Mental health
assessments and interventions must focus not just on the individual, but also
on the context within which an individual lives his or her life.
Service developments
More specialist psychological therapy services for people with learning
disabilities including CBT, family therapy and psychodynamic therapies, are
being developed in the UK along the lines recommended by the National Health
Service Review of Psychotherapy (Parry,
1993). The Royal College of Psychiatrists has established a
multi-disciplinary working group to review some training issues concerning
psychotherapy and people with learning disabilities. However, therapy is
likely to remain a rare provision for the foreseeable future.
Training
Education for health and social care professionals about the emotional
needs of people with learning disabilities should be made widely available,
and psychiatrists should inform this agenda. Professionals in the
multi-disciplinary team would be enriched by understanding and applying the
core concepts of CBT (Kroese et
al, 1997). The need for parental counselling as part of early
intervention following diagnosis of learning disability is reinforced by
recent attachment research; such counselling could be part of the repertoire
of health visitors and focus on primary care-givers. Learning disability
social workers and community nurses could train as bereavement counsellors and
intervene appropriately at times of loss in order to ensure inclusion and
facilitate grieving. However, more specialist training opportunities need to
be developed in order to make psychoanalytic psychotherapy available to people
with learning disabilities.
Future research
Clinical audit using standard outcome measures should be part of learning
disability psychotherapy service protocols.
Research is needed to look at predictors of outcome in terms of patient characteristics, and to help practitioners focus their therapeutic effort as effectively as possible. However, process research will also be valuable in helping us to understand more about the impact of learning disabilities on individuals and families.
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Clinical Implications and Limitations |
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LIMITATIONS
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Received for publication July 12, 1999. Revision received September 20, 1999. Accepted for publication September 21, 1999.