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Pru Allington-Smith is a consultant psychiatrist dually accredited in child and in learning disability psychiatry and employed by North Warwickshire National Health Service Primary Care Trust. She works in a child learning disability team in Coventry and at Brooklands Hospital (Brian Oliver Centre, Brooklands, Coleshill Road, Birmingham B37 7HL, UK. Tel. 0121 329 4930; e-mail: pru.allington-smith{at}nhs.net), which has an in-patient service for adolescents who have learning disabilities in addition to severe psychiatric, behavioural or emotional problems.
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To compound the problem there are often huge hurdles to leap in order to receive help from psychiatric services. In many areas of Britain these services exclude children who have learning disabilities. It is often left to paediatricians to deal with very complex behavioural issues. In regions where there is a service it may be provided by child psychiatrists or by learning disability psychiatrists.
Current government policy, set out in Standards 8 (Disabled child) and 9 (Child and adolescent mental health) of the National Service Framework for Children, Young People and Maternity Services (the Childrens NSF; Department of Health, 2004) stipulates that every local area in England should offer a psychiatric service for children with learning disabilities, but this a recommendation, not a legal requirement. The ongoing failure to provide such services can cause children who might have been supported in their own homes to be placed in distant residential schools or units. Not only is residential care expensive, but placements far from family homes reduce the chances that these children will return to their families and local areas as adults.
| Disability or difficulty? |
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| Recognition and management |
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Particular expertise is needed in dealing with autism, which is associated with particularly high rates of behavioural and psychiatric problems, especially in children who have moderate or severe learning disabilities. They represent the vast majority of those with severe challenging behaviours.
| Prevalence of psychiatric disorder |
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Although precise figures are hard to come by, the British Paediatric Association (1994) has estimated that an average health district with a population of 250 000 would be expected to include 200 children with a severe learning disability. Kiernan & Qureshi (1993), looking at challenging behaviour, estimated that in such a population there would be about 25 children whose severe learning disability was associated with challenging behaviour that posed a serious management problem. There were also likely to be a significant number of children with mild or moderate learning disabilities who presented with psychiatric or behavioural problems.
Factors predisposing to mental health problems in learning-disabled children are listed in Box 1
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Box 1 Predisposing factors for mental health problems in children with learning disabilities
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| Factors predisposing to behavioural problems |
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Poor coping mechanisms
A lack of coping strategies can lead to reliance on aberrant behaviours when things go wrong. If a child learns that shouting, screaming or becoming aggressive when unable to think of a solution to a problem brings an adult to deal with it or remove them from the situation, such challenging behaviour can become an automatic response to any situation where the child feels uncertain or threatened.
Physical illness and genetic conditions
Illnesses such as ear infections, dental problems and constipation may not be recognised in children who cannot indicate what is wrong. Children may hit the area that hurts, to distract themselves from the pain, or they may respond with an increase in stereotypical behaviours such as rocking. Longstanding physical problems with hips or feet may cause pain, particularly if the childs movements are limited.
Epilepsy is very common in children with learning disabilities and is often complex and difficult to treat. It can be difficult to diagnose seizures in a child who displays stereotypical or bizarre behaviours. A possible tic disorder should also be considered. Frequent seizures are likely to impair concentration and may result in irritability. Anti-epileptics may cause sedation or worsen behaviour.
Some genetic conditions are associated with particular aberrant patterns of behaviour (behavioural phenotypes), and knowing that these are present can lead to better management. A prime example is the prevention of excessive weight gain in individuals with PraderWilli syndrome, a characteristic of which is an overwhelming urge to overeat.
Environmental factors
Children with learning disabilities often have low self-esteem. No matter how supportive their families the children know that they cannot do things as well as others. Sometimes they are dysmorphic and often they are poorly coordinated and clumsy. They are frequently mocked by other children and some adults. Society tends at best to pity and patronise them. Depression and anxiety are particularly prevalent in older children as the ability gap between them and their peers continues to widen and becomes more apparent.
Learning-disabled children are more at risk of physical, emotional and sexual abuse than children of normal IQ. It can be hard to form a close bond with a child who is not very responsive and may be physically unattractive. Some parents themselves have learning disabilities and struggle to nurture their children. Sexual predators may target disabled children. Communication difficulties, lack of self-esteem and reliance on adults for personal care increase their vulnerability.
| Temper tantrums |
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One of the few things that a child with a learning disability can do as well as their peers is to use their strength. It is not surprising, therefore, that they may use intimidation and aggression to get what they want. A few may come to dominate their households, with disastrous consequences.
| Sleep disorders |
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Sleep deprivation for parents is one of the most important factors leading to family breakdown, be it parental separation or placing the child in social service accommodation.
Establishing a new order
The first step in the management of poor sleeping patterns is to optimise sleep hygiene. Parents need to establish a regular bedtime routine with a reduction in environmental stimulation. Television and computer games should be removed an hour before sleep time. A hot bath, milky drink and story will often help to settle a child. When the child is in bed, lights should be turned off and the adult should leave the room. The adult may have to stay with the child until they settle but this time should be gradually reduced. When the child wakes during the night the parent should settle them with the minimum of interaction and then withdraw. Initially the child is likely to wake frequently and parents may need to return them to bed many times before they finally sleep.
If these or other measures have been applied consistently but are ineffective, particularly in a child with autism, it may be worth prescribing melatonin in the short term (Dodge & Wilson, 2001). This hormone is produced by us all in a circadian rhythm and promotes sleep onset. Giving additional melatonin about half an hour before the desired sleep time is often effective in helping the child fall asleep. It is less effective if the sleep problem is early waking, although a slow-release preparation of melatonin may be effective for some. Melatonin is currently unlicensed in the UK, but it is widely used off-licence by paediatricians and child psychiatrists. The usual dose range is 15 mg. Doses above 10 mg seldom give any additional benefit. In many cases the medication can be successfully withdrawn after a month. In a few children it may need to be continued long term. Melatonin may make epilepsy worse, but it can also reduce seizure frequency, particularly if the epilepsy is induced by tiredness. It should also be used with caution in children with a history of asthma.
| Attention-deficit hyperactivity disorder |
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Stimulant medication is still the mainstay of treatment (MTA Cooperative Group, 1999), but learning-disabled children seem to be more prone to side-effects, particularly appetite suppression, and weight needs to be closely monitored. If weight loss is a problem or stimulants are not tolerated, I have found atomoxetine in standard doses to be a useful alternative.
| Depression |
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In the UK, the National Institute for Health and Clinical Excellence (NICE) has now issued guidance on the treatment of childhood depression (National Collaborating Centre for Mental Health, 2005). This recommends that cognitivebehavioural therapy (CBT) be used in preference to medication. If medication is required for severe depression or when psychotherapeutic interventions have not been beneficial or have been refused, it advocates fluoxetine as first-line treatment, with sertraline and citalopram as the only second-line agents. However, the document makes it clear that children with learning disabilities were not considered specifically or separately in drawing up the guidelines.
It may be possible to adapt CBT for more-able children, but antidepressant medication still has a place, particularly for less-able children who are unlikely to benefit from CBT. Children with autism may find it impossible to apply CBT techniques learnt in a clinic setting to everyday life.
| Self-talk and psychosis |
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The emergence of schizophrenia in childhood in someone with a learning disability is nearly always associated with a change in personality and a reduction in functional abilities. The child is less likely to have complex delusional ideas and more likely to experience visual or tactile hallucinations. The prognosis for early-onset schizophrenia is generally poor. The presence of affective symptoms should raise the question of a bipolar disorder.
If psychosis is suspected, it is essential to perform brain imaging (computed tomography or magnetic resonance imaging) and an electroencephalogram that includes frontal leads. Frontal and temporal lobe epilepsy can be associated with psychosis, although the epilepsy usually precedes the psychosis by a number of years. The presence of genetic conditions associated with psychosis, particularly velo-cardio-facial syndrome and PraderWilli syndrome, should also be investigated.
| Autistic-spectrum disorders |
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Autism, in its narrowest definition, is associated with a learning disability in 70% of cases. When the wider category of pervasive developmental disorder is used (this includes sub-categories such as Asperger syndrome and pervasive developmental disorder not otherwise specified), the association with a learning disability falls to 24%. De Bildt et al(2003), in their review of prevalence studies, estimated the rate of pervasive developmental disorder to be between 7.8 and 19.8% in children and adolescents with learning disabilities. Young people with autistic-spectrum disorders are over-represented among those who have problem behaviours.
Understanding autism
Professionals seeing children with autism need a thorough understanding of the disorder. Educating parents about autistic disorders (Boxes 2
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) gives them a better insight into the way that their child perceives the world. This in turn leads to more effective behavioural management at home as well as increased empathy with the child. Parents may have been told that their child is just naughty or that they are failing as caregivers. The childs behaviour is usually bizarre and sometimes frightening. At the time of referral, parents are often demoralised, with feelings of guilt or blame. Finally to be given an explanation of why their child behaves as he or she does nearly always comes as an enormous relief. Families can be given contact details for autism support organisations, most of which are excellent. The National Autistic Society has a particularly helpful website and online bookshop (http://www.nas.org.uk) and telephone helpline (0845 070 4004).
Box 2 Behavioural problems in autism
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Box 3 Triggers for behavioural problems in autism
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| Box 4 How it feels to have autism If you have an autistic-spectrum disorder the world you inhabit is a very scary place. If you cannot predict what other people may be thinking or feeling, any change in your normal routine can throw you into a panic. A new school escort, school bus, or teacher can precipitate an outburst of extreme agitation. Problems filtering out sensory information can make some places intolerable. In a supermarket it may be the hum from the overhead strip lights, the fans in the fridges, the echoing of voices, the hordes of strange unreadable people or the fact that you cannot predict how long you will have to endure the outing before you are returned to the safety of your home. A screaming fit or aggression will usually lead to you being removed to a place you feel safe. To prevent such experiences you may refuse to leave the house, strip off your clothes or work yourself up into such a state that you vomit.
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Management of autism
Problem behaviours of children with autistic-spectrum disorders (Boxes 2
and 3
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Box 4
describes how it can feel to have autism. Most of the behavioural problems mentioned are mediated through anxiety, and most of the management strategies described below are aimed at reducing the childs high anxiety level.
Establishing communication
Most children with autism find it easier to understand visual rather than verbal information, even when their use of language is good. Providing a visual sequence of forthcoming events can help them understand what is expected of them and, crucially, when they will return to a place or an activity that makes them feel safe. The sequence may be very short, showing just the next activity, or it may encompass the entire day. The sequence might use objects of reference (e.g. a seat belt strap to indicate a car ride), photographs, symbols or written words, depending on the childs level of understanding. Assessment by a speech and language therapist will indicate the best modality to use.
Most special schools for children with severe learning disabilities use a total communication environment, where signing and symbols are used as a matter of course alongside speech. The Picture Exchange Communication System (PECS) (Bondy & Frost, 1994) has been particularly beneficial. A key role of speech and language therapists in such schools is to train the school staff to use PECS with all the children. They should also encourage and teach parents to use PECS with their child at home.
Improving the environment
Simple adaptations to the childrens physical environment can help them. In schools or residential care in particular, rooms can be made less busy by siting screens so that a child is not distracted or upset by people walking past and by allowing the child to face a blank wall to help them focus on a task. It is helpful to have a quiet room where a child can calm down when agitated. In the home, a room where the child can calm down or be safe when the parent has to be elsewhere is invaluable.
Sensory and music therapy
Sensory integration work can be extremely helpful for children who react badly to environmental stimuli, perhaps finding touch and certain textures hard to tolerate (Bogdashina, 1996). It enables people to work more directly with a child in reciprocal interactions. A specialised occupational therapist can advise on aids for individual children: weighted jackets, for example, help some to reduce their anxiety. Music therapy by a trained music therapist is thought by many to help children understand the function of reciprocal communication and to learn how to begin to respond to other people (Eschen, 2002).
Diet
Restricted diet can be a real difficulty, particularly in younger children. A child may only eat a limited number of foods and even those may have to be particular brands. In extreme cases this can lead to severe malnutrition and growth retardation. The combined forces of a dietitian and speech and language therapist are often required.
Parents themselves often impose a particular diet in an attempt to improve the behavioural problems of children with autistic-spectrum disorders. Exclusion diets (particularly gluten and casein) and supplements such as fish oils and vitamin B6 are common. The possible benefits of these dietary manipulations have yet to be rigorously evaluated.
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| Young offenders |
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Treatment programmes have been developed for learning-disabled adult offenders (Lindsay, 2002) and the principles they utilise could be employed with children. For arsonists, the main aim is for the offender to realise the potential risk to others of what they are doing. Sexual offenders have often been abused themselves or are seeking out sexual partners of a similar developmental level to themselves. Their treatment usually involves sex education and work on denial, motivation, relapse prevention and past abuse that they have suffered.
| Service provision |
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Box 5 Essential components of a childrens community learning disability team
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Guidance on the provision of services for children with learning disabilities has been produced by the Royal College of Psychiatrists (2004).
In-patient services are currently a scarce resource and as a result many learning-disabled children are inappropriately placed with private organisations or in secure social services accommodation. Ideally, each region should have an in-patient unit. The lack of in-patient facilities in London and the south-east of England is of major concern. Units intended for children with learning disabilities should be sited within either CAMHS in-patient provision or a learning-disability hospital. Most children who require admission have significant problems managing aggression and staff require training in appropriate restraint techniques and a high level of external supervision and support from senior nursing staff. The children have often had large gaps in their schooling, so educational provision in these units is vital.
| Medication for behavioural problems |
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The most common scenario is that of a child (usually a boy) with autism whose raised anxiety levels are resulting in severe aggression or self-injury and who has not responded to behavioural management, speech and language support and consideration of sensory and environmental requirements. The family may not be able to continue to care for him or he may pose a significant threat of harm to others, most often to the mother and siblings. The aim of medication would be to reduce the childs anxiety levels so that he is less likely to become agitated to the point of violence, thus allowing other management strategies to proceed.
Carbamazepine
Carbamazepine can be effective in learning-disabled children with poor impulse control that leads to significant aggression. Dosage depends on the size and age of the child but is generally less than that used in the treatment of epilepsy (maximum of 600 mg daily in divided doses). Such children should also be evaluated for the presence of symptoms of ADHD and treated accordingly (see above).
Selective serotonin reuptake inhibitors
In more-able older children with autism the anxiolytic properties of a selective serotonin reuptake inhibitor such as fluoxetine may be helpful, particularly if there is also evidence of low mood. The dose should be started low, i.e. 5 mg, and increased to a maximum of 20 mg, depending on the age of the child.
Risperidone
The antipsychotic risperidone also has good anxiolytic properties when used at a much lower dose than would be used to treat psychosis. Irrespective of their age or size, I always start children on 0.25 mg and allow a month to assess the response fully. Doses above 1 mg per day are seldom indicated. Risperidone is at present unlicensed for children or for use in autism. It often produces an increase in appetite and weight gain, so children should be weighed regularly. Many children also become constipated after a time, but this usually responds to osmotic laxatives. Risperidone can also cause stomach ache and headaches. Extrapyramidal side-effects can occur even at lower doses and there is a risk of tardive dyskinesia. Raised prolactin levels can cause gynaecomastia and even, rarely, galactorrhoea. There is currently a debate about whether regular blood tests should be employed in children treated with risperidone.
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For a commentary on this article see pp. 138140, this issue. | References |
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