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When James was 12 he developed dermatitis and started to scratch his skin.
He soon realised that this activity attracted attention from those around
him, and the scratching increased rapidly to the point where James would dig
his thumbnails into open wounds and pick out the flesh. He was referred to a
unit which specialised in treating children with this type of behaviourial
problem. After intensive treatment, James stopped injuring himself and was
discharged.

For 18 months everything went well, then he relapsed and started to bang his
head on objects and to punch or slap his face hundreds of times a day. He
also developed cataracts, possibly induced by the punching, and lost his
sight. James is now in the back ward of a long-stay hospital where his arms
are tied behind his back, and his hands enclosed in mittens and gloves, for
over 23 hours a day. He requires one-to-one support 24 hours a day, and the
cost of maintaining even this impoverished quality of life is Pounds
Sterling 60 000 to £70 000 a year.

James is one of an estimated 10 000 people in Britain with a learning
disability (formerly called mental handicap) who deliberately and regularly
harm themselves. The more profound the learning disability, the more likely
self-injury is to occur. Estimates of the proportion of people with severe
learning disabilities who harm themselves in some way range from one in
eight to one in three in those whose learning disability is combined with
autism and a sensory disability such as loss of sight or hearing.

By contrast, deliberate self-injury is rare among the general population,
affecting less than 1 per cent, although rates are higher among people with
borderline personality disorders or young women in prison. Former nurse
Beverley Allitt, convicted in May of the murder of four children, was found
to have deliberately injured herself many times in the years leading up to
the murders as a means of gaining attention from GPs and hospital
consultants. This behaviour is characteristic of the rare psychiatric
condition known as Munchhausen’s syndrome.

For people like James, however, the physical consequences of self-injury can
be devastating. In addition to scratching and head banging, they may bite,
punch, slap or pinch themselves. If left untreated, they may lose their
sight or hearing, suffer neurological damage or even die. In a study in the
South East Thames Regional Health Authority Area in 1984, Chris Oliver and
Glynis Murphy, clinical psychologists based at the Institute of Psychiatry,
London, discovered 616 people with learning disabilities who had inflicted
‘nonaccidental damage’ on themselves in the previous four months, accounting
for approximately 4 per cent of all people with a learning disability in the
region. Self-injury was more prevalent in those in long-stay hospitals (12
per cent) than in those living in the community (1.5 to 2 per cent).
Thirty-eight per cent of the sample bit themselves, and more than 30 per
cent engaged in picking, scratching and head banging or punching. Less than
2 per cent used any kind of tool to inflict the injury.

Until the mid-1960s there were no known treatments for people who injured
themselves. Then, in 1965, the psychologist Ivar Lovaas of the University of
California at Los Angeles published a paper showing that self-injury could
be increased experimentally by ‘rewarding’ the behaviour, demonstrating that
it could be under some kind of environmental control. This led to a flurry
of activity as psychologists used aversion techniques ranging from
unpleasant smells to electric shocks to ‘extinguish’ self-injury from the
behaviourial ‘repertoire’ of people with learning disabilities. Although
these techniques rapidly suppressed the damaging behaviour, most of the
people treated reverted back to either the same or some other form of
self-injury within two years.

In the late 1980s psychologists began to take another look at the problem.
This time they paid more attention to the underlying function of the
behaviour as well as to the environmental conditions in which people with
severe learning disabilities were living. What they found was a group who
are frequently unable to communicate their needs to others because they lack
speech or other means of expression, and who often have associated physical
disabilities including problems with sight and hearing. As a result, they
have to rely on others to gain access to food, drinks, toilets, leisure
opportunities, a visit to the dentist and all the other things that most
people take for granted, but were often unable to communicate these needs
to their carers.

Psychologists began to realise that, in the absence of any other means of
communication, self-injury could be a crude but effective means of
expression. Head banging or hand biting are a good way for a person with
severe learning disabilities to get someone’s attention until their needs
are met. This contact in effect rewards the head banging or hand biting and
so makes it more likely that the person will use the behaviour again in the
future – a learning process that psychologists call ‘operant conditioning’.
As Oliver points out: ‘Psychologists used to call self-injury ‘maladaptive
behaviour’, but actually it’s incredibly adaptive. It’s beautifully adapted
to the situation that the persons find themselves in.’

This suggested that aversion treatments that suppress self-injury without
offering individuals an alternative means of communication would inevitably
fail in the long term. Instead, psychologists argued, treatments should
focus on developing new forms of communication by rewarding desirable
alternatives to self-injury, such as hand signing or pointing to pictures or
miniature versions of objects needed.

Beech Tree School near Preston, opened by the Spastics Society in 1985,
specialises in the use of this type of technique. Children come from all
over Britain and stay for two-and-a-half years. Mary is a typical pupil,
according to Malcolm Jones, the school’s psychologist. Fifteen years old,
she has severe learning disabilities and no speech, and falls within the
‘autistic spectrum’ as do many others at the school. She was born into a
large family and was taken into care at a very young age, and spent nine
years in a succession of poorly staffed and equipped hostels.

When she arrived 18 months ago, Mary showed ‘horrendous’ self-injury, says
Jones. The charts kept by the school show a body covered in self-inflicted
grazes, cuts and bruising. Her head banging, in particular, gave cause for
concern, averaging more than 500 blows a day in the months immediately after
admission, with a peak of 1255 blows on one bad day. Faced with this
behaviour, previous carers had resorted to more and more medication until
Mary was taking five different drugs. The side effects of these have left
her with tardive dyskinesia, which pulls her head permanently down on side
and gives her the gait of a person with cerebral palsy.

The approach used at Beech Tree gets back to basics. The staff draw up
individual educational programmes, based on a detailed analysis of the
function of every element of the damaging behaviour. These programmes
operate 24 hours a day, seven days a week for the whole period of the
child’s stay. Work with Mary has focused on her head banging. When she bangs
her head now, staff intervene to protect her – for example, by using small
mats to cushion the blows – but are careful not to reward the behaviour.
Only when she is calm is a reward offered, reinforcing the calm behaviour.
At the same time they are teaching Mary other ways to express her needs –
for example, by pointing to a miniature cup to show that she wants a drink.

No nagging here

For Mary, as for 80 per cent of children attending the school, these methods
have brought significant improvements. Much of her bruising is now gone, she
is head banging much less and is gradually being weaned off the drugs.

The goal of Beech Tree is to get children back into their own community or,
failing that, into a residential school that meets their primary handicap.
With 84 staff – many with special skills – to look after 14 children, a
placement is not cheap. It is costing Mary’s local authority a minimum of
£65 000 a year for her place – about £30 000
more than the cost of providing care for her primary handicaps. But if the
therapy is successful, Mary will never need the kind of extensive, and
expensive support, that James requires.

The techniques used at Beech Tree seem relatively simple, but as Jones
points out ‘the enormous complexity comes in actually delivering them’.
Every member of staff and all other carers must be clear about the
strategies adopted so that their messages to the child are constantly
positive. ‘I guarantee that you didn’t hear anybody nagged today as you went
round,’ says Jones. ‘That’s a very serious disciplinary matter here.’

Reversing a behaviour that has been reinforced for many years is hard. The
severity of some forms of self-injury may make it very difficult to provide
training in communication. Teaching someone to point to symbols on a board
or to use hand signs to communicate is obviously impossible if their hands
are tied, but removal of the restraint may be instantly followed by
self-injury. With the help of a team of orthotists and rehabilitation
engineers at Queen Mary’s University Hospital, London, and funding from the
Mental Health Foundation, Oliver and Murphy are developing a hinged arm
splint with a hydraulic joint at the elbow that locks when subjected to any
sudden movement. Wearers could feed themselves and use hand signals to
communicate needs, but the joint would prevent them from punching
themselves. The resistance of the joint will be adjustable, so that a
behaviour therapist can use the splint to help phase out, say, head
punching.

Why, though, does self-injury develop in some children with learning
disabilities and not others? The roots of the behaviour lie buried in a
complex web of underlying causes, and experts remain divided over its exact
causes and, therefore, how to treat it. In another study funded by the
Mental Health Foundation, Oliver and Murphy have identified three possible
factors which contribute to the onset of the behaviour. The first is a minor
illness, typically a middle ear infection, that leads to a child banging his
or her head in an effort to relieve the pain. The second is the presence of
stereotypies – rhythmic or repetitive movements such as body rocking or ear
flicking – which, over time, may develop into self-injury if the child finds
that the more damaging behaviours are rewarded by attention from carers. The
third, less common cause is a chance occurrence, such as an accidental head
injury, that produces a big response from onlookers and is thereafter
deliberately repeated.

Other researchers have looked at the biological determinants of self-injury.
Although scientists have long suspected that there is a biological basis to
self-injury, there was no evidence to back this hunch until the early 1970s
and the discovery of endorphins – the opiate-like substances that act as the
body’s natural painkillers. This suggested that self-injury might develop as
a means of gaining the euphoric effect associated with the release of
endorphins (similar to that experienced by users of heroin and morphine). A
second explanation was also advanced: that self-injurers have abnormally
high endorphin levels which reduce the aversive effects – the pain and
discomfort – arising from injuries.

Supporting evidence for the role of endorphins came in the early 1980s with
some American studies using naloxone, a drug used for treating heroin
addicts. Naloxone works by blocking endorphin receptor sites in the brain,
preventing any euphoric effect and reintroducing sensitivity to pain. In
some trials, researchers found that naloxone significantly reduced the
severity of damaging behaviour among people showing serious types of
self-injury. The trials, however, involved only two or three subjects; and
other small-scale trials, including ones by Beech Tree School and John
Corbett, a professor of developmental psychiatry at the University of
Birmingham, failed to find a similar effect. In the absence of a
large-scale, controlled trial, the links between endorphin levels and
self-injury remain unclear. But the case for a link of some kind was
reinforced in a study by Kurt Sandman of the University of California at Los
Angeles. In 1990, he reported raised levels of endorphins in a sample of
people with autism, with even higher levels in those who regularly harm
themselves.

Another theory is that there is a connection between self-injury and the
neurotransmitter dopamine that controls the transmission of nerve impulses
within the parts of the brain governing movement. The evidence here is far
more speculative and rests on the finding that the number of dopamine
receptors are reduced in individuals with some syndromes associated with
high rates of self-injury – notably Lesch Nyhan syndrome, a rare disorder
characterised by self-biting. This leads to the remaining receptors becoming
supersensitive so that less dopamine is required for the nerve cell to fire.
There is some evidence, but again from a limited number of trials, that
giving this group drugs that block the dopamine receptor sites can lead to
reductions in self-injury.

Euphoria does not explain all

Whatever the underlying neurochemistry, it is not clear how biological
determinants can provide a complete explanation for the development of
self-injurious behaviour. As Oliver points out, ‘just because something’s
not painful can’t explain why people do it’. It seems more likely that
biological and psychological factors may both be at work. Thus, operant
conditioning may explain why a behaviour develops in the first place, while
endorphin imbalances may account for the severity of injury on a regular
basis and also why certain conditions (such as autism) are particularly
associated with self-injury.

While researchers have yet to find out why self-injury occurs, it is
apparent that few people are being offered any kind of effective treatment.
Oliver and Murphy found that only 2 per cent of people in their study were
receiving any kind of behavioural therapy. The most common treatment remains
psychoactive drugs (40 per cent of their sample), although there is no
evidence that these are effective in treating self-injury. One in eight were
also physically restrained, sometimes with splints made of wood or bits of
plastic drainpipe, to stop them bending their arms and punching. The
long-term use of such restraints leads to muscle wasting and physical
deterioration.

Jones says that despite the progress made by psychologists in developing
effective, humane and practical treatments, many professional carers believe
that the earlier aversion techniques persist in modern behavioural
therapies: ‘A lot of people appear to think that what we do is rush around
with Smarties and cattle prods or something.’ This reaction from many carers
has created a market for unevaluated therapies, such as shiatsu massage and
aromatherapy, while a range of unevaluated American approaches such as
‘gentle teaching’, which emphasises bonding, interdependence and gentleness,
are being disseminated by proponents with evangelical fervour among care
staff in Britain. Oliver believes the fault lies with researchers who either
do not see it as their responsibility or lack the resources to disseminate
what they know about modern applied behaviour techniques to workers in the
field.

In theory, the new Community Care Act, implemented in Britain in April,
should make things better. Local authorities now have a clear responsibility
to assess each individual’s needs and to arrange individualised (and local)
treatment, care and support, with the goal of creating an ‘ordinary life’ in
the community. In practice, however, people who harm themselves deliberately
will continue to place severe strains on the system. There are very few
experts, and in any one area there are unlikely to be enough individuals
with severe self-injury to make it worthwhile for a local authority to
develop its own services.

The simplest answer will often be to pay for the individual to be placed in
a distant residential school or hospital ward. Jim Mansell, professor of
applied psychology of mental handicap at the University of Kent at
Canterbury, pointed out in a recent report to the Department of Health that
if health service managers do rely on expensive, institutional, out-of-area
placements rather than developing local services, ‘the policy of community
care will be said to have failed’. Jones recalls that ‘when we built Beech
Tree we thought that within five or six years local authorities would be
doing this work themselves. The big disappointment is not only that local
authorities are not doing it, but that if they are doing it they’re not
doing it very well.’

Oliver is clear about one immediate way forward: an early intervention
programme that actively seeks out children at risk of developing self-injury
and teaches parents and staff what to do to prevent it happening.
Determining who should implement this is less straightforward. At present,
resources are not available until the self-injury is serious enough for an
expert to be brought in, by which time it is often too late. Oliver favours
using the education system to disseminate advice although, given the failure
of schools to implement strategies for those who already show self-injury,
this looks some way off.

‘People will hang on and hang on until something goes wrong – a hostel
placement breaks down or a child is excluded from school,’ Jones explains.
At that point they will look for ‘somewhere, anywhere to place this child’.

The costs of failing to intervene, however, are enormous. Researchers in
the US estimated in 1984 the costs of providing a service for 34 000
individuals with self-injury over and above the care they require for their
primary handicap to be $1 billion a year. No comparable figure is
available for Britain, but for someone like James, the lifetime costs of
providing extra care are likely to reach £750 000. The other
costs of self-injury, in terms of its effects on the wellbeing of carers and
the physical damage done to the self-injurer, are probably incalculable.

Justin Russell is a senior projects officer at the Mental Health Foundation.