CHAPTER 10:
PSYCHIATRIC AND BEHAVIOUR DISORDERS IN CHILDREN AND ADOLESCENTS WITH LEARNING
DISABILITY
PRU ALLINGTON-SMITH
Young people with a learning disability are not a homogenous group. They vary in their level of cognitive impairment, whether they have an autistic spectrum disorder or not, the presence of other disabilities, the cause of the impairment, their families and by no means least in their personalities. Each is a unique individual who comes from a distinct family.
Population studies show that children and adolescents with a learning disability have a much higher incidence of psychiatric illness and challenging behaviour. The Isle of Wight study conducted by Michael Rutter (1965) and his colleagues looked at all the children aged 10-12 years on the island to identify those whose had a psychiatric disorder. Greatly increased rates were found in children who had a global intellectual disability, epilepsy or cerebral palsy. A later study showed the same increase in children who suffered from brain damage following an accident. Where one or more of these conditions is present the risks were cumulative. John Corbett (1979) in his Camberwell study found an overall rate of 47% for psychiatric disorders in children with a severe or profound learning disability. Similarly high figures were also reported by Gilberg in his 1986 study.
Though precise figures are hard to come by, The British Paediatric Association (1994) estimated that an average district with a population of 250,000 would be expected to have 200 children with a severe learning disability. Kiernan and Quereshi in1993 studying challenging behaviour estimated that in this population there would be approximately 25 children whose severe learning disability was associated with challenging behaviours that posed a serious management problem.
The nature and complexity of these children is best dealt managed by a multidisciplinary approach drawing on the appropriate resources from education, social services and health. Each professional needs to work not only with the young person but also their families and liaison with colleagues from other disciplines is essential. Listening to parents is the greatest source of information and workers ignore their insights at their peril. Harsh judgements about the family’s coping strategy are sometimes made, but the professional must imagine how they would cope given the family set-up and circumstances. Imposing ideas without engaging the family will seldom lead to any improvement in the life of the young person.
The services available for these young people vary widely according to geographical location. A child with a behavioural or psychiatric problem may be referred to a community learning disability team, paediatricians or community paediatricians, psychiatrists in learning disability psychiatry, child psychiatrists or to clinical psychologists. In only a few areas will the general practitioner have a choice. Who sees these children and adolescents in a particular district depends often on a professional having an interest, be they a paediatrician, psychiatrist or clinical psychologist. As it seems to be down to chance, unfortunately in some areas there is no one willing to see these children . However, examples of specialist co-ordinated services do exist. For the child with a behavioural or psychiatric problem, the core team could comprise of community learning disability nurses, clinical psychologists, learning disability and/or child psychiatrists, communication therapists (speech and language), and social workers. These team members should work closely with teachers, school nurses, educational psychologists, and community paediatricians. Other professionals from physiotherapy, occupational therapy and music and art therapists may also have an important role.
A full assessment starts with a comprehensive history of the child and its family. It may be possible to interview the young person on their own as well as the parents. Additional information should be sought (with parental permission) from the school, community nurses, respite workers and other professionals who have been involved with the child. A visit to the school is often illuminating. Children with severe behavioural problems may present very differently in environments other than home.
Particular emphasis should be placed on the duration and frequency of the presenting problems and any precipitating factors. It is important to assess the level of learning disability, though a formal psychometric assessment (IQ) is seldom necessary except where there is a marked disparity between the child’s various abilities. Particular emphasis should be placed on how well the child or young person is able to communicate his or her wishes. Children with autism may have a large vocabulary but speak only rarely and then only to communicate basic needs. It is important to document the presence or absence of an autistic spectrum disorder. This has profound implications not only for how the child should be taught but also on the management of the presenting problem. Traditional behavioural approaches do not work well with a child with an autistic spectrum disorder and sometimes make things worse. In addition to giving specific advice on how to manage behaviours it is vital that the parents and teachers have a good understanding of what autism is so that they can begin to understand what the child’s perception of his world is likely to be.
A full medical history should be sought as many children especially those who have a severe or profound impairment often have multiple disabilities. It is particularly important to ask about visual and hearing impairments. The child should be examined and, if necessary, investigations ordered. Physical ilness should always be eliminated as a cause of behavioural problems particularly if it is of relatively recent onset. Chronic dental or ear infections will lead to distress and perhaps head banging. Orthopaedic problems are common, for example dislocated hips in a person who sits all day in a wheelchair. Some parents are not aware that some of the conditions can be alleviated and it is sometimes necessary to ask for procedures that would automatically be offered to normal children.
Epilepsy is particularly common in this group and may not have been recognised particularly if the child has absence seizures. Epilepsy can have a profound impact on the child’s behaviour even when there are few overt seizures as abnormal electrical activity may be present in the brain between frank fits. Where any doubt exists it is worth obtaining an electroencephalogram. The treatment of epilepsy can produce its own problems. Some drugs can affect behaviour and even occasionally provoke a serious psychiatric illness (see chapter 6 for an account on epilepsy). Many side effects are very predictable, such as drowsiness or mental slowing, and are obvious to carers. Other common side effects, such as blurred vision may go unrecognised because the child cannot or does not complain. It is therefore important to report any unusual behaviours to the doctor. Some drugs, most noticeably carbamazepine and phenytoin can be monitored by blood tests and the dosage adjusted accordingly. Newer anti epileptic drugs have become available in recent years are most are associated with fewer side effects that affect mental alertness. However this does not mean that they do not have side effects.
A child developing normally will frequently display extreme reactions to being denied what he or she wants. The “terrible twos” are aptly named. As the child’s reasoning abilities develop, so does its capacity to wait for what it wants or to cope with disappointment. A child with learning disabilities may not achieve this level of reasoning and so may continue to behave in a similar way to a normal two year old but with more destructive and frightening consequences as he or she gets bigger and stronger. Less than ideal management of a normal two year old does not matter as the child is likely to eventually grow out of the habit but parents of a child with learning disabilities may not have this luxury.
Parents realise that to give in to the child’s demands during a temper tantrum is not the right thing to do but often weaken their resolve in the face of continuing shouting, screaming, destruction and/or physical aggression either directed towards themselves or the unlucky parent. The sad fact is that the behaviours will continue if there remains the smallest chance that the child will get what it wants. It is only by being completely consistent in “saying no and meaning it” that the behaviours will stop. In the short term when parents begin to take this firm line, the situation will even get worse as the child tries to find the parents’ breaking point. If this can be endured then the results in the end are more than worth the struggle. This is obviously easier to do with the young or physically small child. Some parents express the idea that because the child has disabilities, they have the right to have whatever they want when they want, as if this somehow will make up for their life difficulties. No one wins with temper tantrums as the child does not enjoy the behaviour and has no idea about how to bring it to an end.
General behavioural guidelines can be helpful for parents and include:
· Ignoring unwanted behaviours wherever possible
· Persistently praising desired behaviour
· When intervention is needed, remaining calm and not shouting
· Both parents to agree on the approach to be taken to unwanted behaviours when the child is not present
On some occasions a period of “time out” can be helpful. It is explained to the child that they are being given a short time alone to calm down. The child is then led, typically to their bedroom where they must remain for a maximum of 5 minutes. The parent must remain calm at all times and not talk to the child once they are in time out. The child is free to return after the allotted time and should not be chastised further. If the parent wishes to discuss what has happened with the child it should be done after several hours have elapsed and the child is completely calm.
Most children thrive on attention, and although they prefer it to be positive, will settle for criticism or physical chastisement if non is forthcoming. It is vital therefore, to spend time encouraging the child in desirable activities and not leaving him or her alone because, for once, they are being quiet. A child can only model its behaviour on what is going on around them. If the child hears the parent shouting and swearing, then that is what it will do too, only louder!
For a child with an autistic spectrum disorder, the above often does not apply. Tantrums in an autistic child are frequently a response to overwhelming anxiety. These children find it very difficult to cope with new situations and people as they see them as unpredictable and therefore potentially threatening. Becoming very upset in these situations will usually result in the “threat” being removed or the child being taken back to a familiar environment. To then be told off is incomprehensible to the child and may increase the level of distress. The frequency of such episodes can often be reduced by preparing the child in advance of a new situation, i.e repeatedly telling the child where they are going and what will happen when they get there.
The diagnosis of autistic spectrum disorders in children is one of the main reasons for referral to psychiatric services. A diagnosis can be made reliably in children as young as 18 months depending on severity. The more severe the degree of learning disability, the greater the prevalence of an autistic disorder. In children with a severe or profound learning disability (IQ below 30) a diagnosis of atypical autism is most likely. This does not imply that these children are less autistic but that they do not have enough abilities, either intellectually or physically, to demonstrate the full range of autistic behaviours.
Recognition of the condition has important implications for the educational provision for the child and it may influence which school the child attends or the method of teaching employed in the classroom. With increasing recognition of the disorder, greater demands for specialist educational provision have come from parents. Few areas have adequate resources at present. In children who also have a learning disability, each needs to be assessed individually. Some will do better in schools for children with autism, others will flourish in “ordinary” special schools most of which now employ specific teaching methods for this group of children.
Time spent educating parents about the condition gives them a better insight into the way that their child perceives its world, this in turn leads to more effective behavioural management at home as well as increased empathy with the child. Parents have often been told that their child is just naughty or that they are failing as parents. The child’s behaviour is usually bizarre and sometimes frightening. At the time of referral, parents are frequently demoralised with feelings of guilt or blame and to finally be given an explanation for what their child is doing comes as an enormous relief. The families can be given contacts for the various autism family support organisations most of which are excellent.
Sleep problems are one of parents’ main complaints. In extreme cases it can result in the child having to move away from home because of parental exhaustion. Many children with a severe learning disability, especially those who are also have an autistic spectrum disorder, seem to have a decreased need for sleep. The child may not settle to bed or wake frequently or early. Poor sleep is sometimes associated with daytime drowsiness and irritability in the child. Some families can be helped by establishing a good bedtime routine and a firm approach on the management of waking. It is surprising how many parents admit that their child has a television in the bedroom. For others behavioural techniques may be ineffective. Medication has a limited role in management. Virtually all of the available preparations affect the child during the day to some extent and tolerance to the drug quickly develops. These “hypnotic” medications may have a useful role when used intermittently when tolerance does not usually occur. For children with a severe or profound learning disability especially where there is also a visual impairment melatonin can be tried. This is a synthetic version of a naturally occurring hormone which is secreted by the pineal gland in the brain. Its secretion is increased before the onset of sleep and during the night and is influenced by the level of light outside. By giving the hormone before the wanted bed time induction of sleep may be obtained. It is less effective for children who wake during the night. The hormone appears to be relatively safe though it has been reported that it can make epilepsy worse.
Attention Deficit Hyperactivity Disorder
This disorder is characterised
by marked over-activity, inattention and poor
impulse control inappropriate for the child’s developmental level. It is
common in children with a learning disability but can be difficult to diagnose
accurately. The triad of symptoms may also be present in children with poorly
controlled epilepsy and those with autism. Symptoms should be present in more
than one environment i.e. at home and at school. The child will have
demonstrated these problems from an early age and often sleeps poorly.
Behavioural techniques may be effective and some children benefit from stimulant
medication. Stimulants such as Ritalin should only be used after careful
assessment and with close supervision. When effective, treatment may need to
continue for several years and during that time growth and blood pressure should
be checked regularly.
Adolescents are the most likely to suffer this disorder though it is by no means unknown in younger children. It is characterised by low mood that is present for the majority of the time and has been present for more than three weeks. The child may be weepy, withdrawn, and disinterested. Sleep, appetite and concentration can be reduced in the more severe cases. In children with a more severe learning disability, the presentation may be different, with an increase in stereotypical behaviour i.e. rocking, self injury and with irritability. There are many causes of depression and many episodes will resolve when the cause is removed or the child is able in some way to express how they feel. Some children have a strong family history of the condition and episodes may have no discernible cause. Most treatments are psychological though the most severely affected children may benefit from antidepressant medication. Teenagers with a mild learning disability are particularly vulnerable to feelings of depression when they begin to appreciate that they are different from other children and more dependant on their parents.
Eating Problems
Poor appetite and poor weight gain are common in young children who have a learning disability. Tube or gastrostomy feeding may be necessary in children with a profound disability. This type of feeding is frequently associated with reflux of the stomach contents back up the oesphagus, causing irritation and ulceration in its wall. In milder cases, this can usually be controlled with medication but when severe may require surgery. Reflux can also occur in a child with less disabilities, particularly when they have autism, and may be related to the way the child chews and swallows. Assessment and advice on chewing and swallowing by a speech and language therapist can be invaluable.
Feeding difficulties in a child with autism may arise because of refusal to try new foods or because the child has dislike of certain food textures or smells. Most children when hungry enough will overcome their prejudices but the autistic child may well prefer to starve. Anorexia Nervosa causing severe weight loss because of food refusal and fear of fatness, is uncommon.
Overeating is more common in older children and can be a source of considerable conflict between the parent and child. In children with Prader Willi syndrome (see chapter 3 on Genetic Disorders and Syndromes), overeating can result in life threatening obesity though as infants these children have feeding problems. At some stage between one and three years, the child’s appetite increases markedly and unless the parents are told what could happen, gain huge amounts of weight rapidly. These children are prone to temper tantrums often over demands for food. Most parents have to resort to locking kitchen cupboards and the fridge.
Whether a child is over or under weight, it is inadvisable to use food as a reward for desired behaviour, not least because the foods that the child most values often have the least nutritional value.
Anxiety in children is common and may range from a simple dog or spider phobia to a severe separation anxiety that prevents the child from attending school. Constantly high anxiety levels are nearly always present in children with autism and arise from a fear of new situations or people. Obsessional behaviour is nearly always present in autism but can be present in other children as part of an obsessive-compulsive disorder. Some children with learning disabilities demonstrate lesser degrees of this, with excessive tidiness and an unwillingness to try new things. This could be interpreted as an attempt to impose structure and order in a world over which they have little influence. Most neurotic conditions in children who do not have autism respond well to behavioural or cognitive therapies and medication is seldom indicated. Occasionally medication can be helpful in children with autistic spectrum disorders.
All families have their own strengths and weaknesses. Having a child with a learning disability inevitably will challenge a family’s resources. Many families cope very well and find the experience a totally positive one. Of course some children are a lot harder to deal with than others, being emotionally unresponsive, overactive or physically unattractive. Parents may be unsupported, socially isolated and have marital difficulties. Single parents and those families where one or both parents have had to give up work to be full time carers may have low incomes. Parents may have unresolved issues to do with having given birth to a “handicapped” child. They may continue to mourn for the child they expected to have or search tirelessly for a diagnosis or “cure”, refusing to accept the extent of their child’s problem. Some parents may themselves have significant learning disability. Support from members of a community learning disability team is usually available and respite care, sitting services or shared care with another family is often accessible. Family therapy to discuss parent child problems can be invaluable.
As we grow older we usually acquire physical and mental skills. We do this partly by exploring our physical environment and by being allowed to take risks. It is also by learning to disagree with parents and teachers that we develop a sense of our own identity. For a young adult with a learning disability, leaving school instead of bringing greater independence, can lead to the opposite. Adolescence often happens late and is prolonged. The young adult may seek for an area of control in the household and may use his/her strength to get it.
Parents of young people with learning disabilities often need to provide more care and more guidance to their children. It is extremely hard to allow a child to do something on their own knowing that they are likely to fail, not once but repeatedly. If the child has an additional problem i.e. poor sight or epilepsy it is even harder. So it is not surprising that many parents are overprotective - not allowing their child to risk failure and thereby denying them opportunities to learn and gain some independence. Children are encouraged to be as independent as possible at school and then get very frustrated at the restrictions imposed on them in the home. By working with the whole family, these issues can be explored and resolved.
School related problems
For parents, one of the hardest times is the assessment period prior to their child starting school. They are often uncertain whether the child would be best placed in a special school or in a supported main stream placement. The trend these days is for Educational Psychologists to recommend that if at all possible the child should start out in the local school. This has obvious advantages, the child will not have to travel far and will meet neighbouring children. He or she will have normal children as a role model for their behaviour.
As the
child gets older the difference between them and their classmates becomes more
pronounced. The child may be teased and bullied and will often start to realise
that they cannot work as well those around them. This may lead to a reluctance
to undertake tasks so that they do not have to demonstrate their problems. In
older children, school refusal may be the ultimate result. Children are
continually assessed throughout school and transferred to special schools when
necessary though this may be delayed but the child is sometimes left with the
feeling that they have failed. Indeed, lack of self-esteem is a feature which
all of these children have in common. It is vital that the child is placed where
they can succeed at their level and not given work that is beyond their
capabilities
It has only been in recent times that the sexual abuse of children has been acknowledged by society. Recognition of the problem in the learning disabled has taken even longer and has been termed “Thinking the unthinkable”. The sad fact is that children with learning disabilities are more vulnerable than normal children. They may be unable to effectively communicate distress and are easily intimidated. Many abused children who could talk have reported that they felt no one would believe them or that they somehow deserved it if bad things happened to them. Children with learning disabilities may have multiple carers and this increases the risk of coming into contact with an abuser though half of abuse takes place within the family. All health and social workers who come into contact with children will have a police check. It is vital that private and voluntary organisations submit their staff to the same procedures. Parents unfortunately need to maintain a high degree of suspicion if the child’s behaviour deteriorates after being in a specific setting. Help is available for children who have been sexually, physically or emotionally abused though the work needed is often long term and permanent emotional damage is common.
YOUNG PEOPLE WHO OFFEND
The vast majority of offenders have a mild learning disability. These young people are easily led by other children into petty crime during which they are nearly always caught because of their lack of sophistication. Arson and sexual offences are the most frequent of the serious offences. Treatment programmes are being developed for adults with a learning disability who offend and the principles they utilise can be employed with children. In 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, the development of empathy for their victims and often work on the abuse that they have been subjected to themselves.
The emotional needs of children and adolescents who have a learning disability are now being recognised and specific services are being developed to help them and their families. Many factors are often involved and help can be drawn from sources in Health, Education, Social Services and the Voluntary and Private Sector. These efforts need to be co-ordinated and advertised so that families know what is available. The aim is for children to grow up emotionally stable so that they can use what abilities they have to their maximum extent.
REFERENCES
British Paediatric Association (1994). Services for Children and Adolescents with Learning Disability (Mental Handicap). Report of a British Paediatric Association Working Party.
Kiernan C and Quereshi H (1993) “Challenging Behaviour” in: Research to Practice? Implications of Research on the Challenging Behaviour of People with Learning Disabilities Ed. C Kiernan. British Institute of Learning Disabilities.
Corbett J .(1979) Psychiatric morbidity and mental retardation. In Psychiatric Illness and Mental Handicap (eds F.E.James &R.P.Snaith) pp11-25. London:Gaskell
Gilberg, C, Persson, E, Grufman,
M., et al (1986) Psychiatric Disorders in mildly and severely mentally retarded
urban children and adolescents: epidemiological aspects. British Journal of
Psychiatry, 149 , 68-74