Minimising distressed and disturbed behaviours.pdf

Minimising disturbed behaviours

Chapter 5

Minimising distressed and

disturbed behaviours through the

care or education environment

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WHY IS IT IMPORTANT TO CONSIDER THE ENVIRONMENT

WHEN PLANNING THE CARE OR EDUCATION OF PEOPLE

WITH AUTISM AND RELATED DISORDERS?

We all respond to our environment. If we are content with our surroundings,

we can be content in ourselves. If we are not content, we will try to reorganise

them, rearrange things, change them or dispose of them. We might even move

away and choose somewhere else to be. Most of us have the power to make

such changes, the power to choose. We are in control of our lives and, to a

certain extent, are able to exercise choice to ensure our comfort and security.

We can negotiate with the social world and find our niche.

People with autism do not tend to have such power of negotiation and self-

determination. They are to a great extent dependent on the good will and

judgement of others. They do not tend to understand their position in the

social hierarchy and may try to influence their surroundings by behaving

in ways that make change necessary. Using behaviour to comment on one’s

circumstances can of course lead to a reduction of those circumstances. People

with autism need help to negotiate for favourable circumstances and the

opportunity for contentment. They need help with making their environment

suitable for their special needs.

The environment is not just the bricks and mortar, plants and inanimate

objects that we are surrounded with, but more importantly it includes the

human beings we have to interact with. Bricks, mortar and objects tend to be

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Tom McK

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predictable and reliable. A wall tends to stay where it is built; a piece of

furniture tends to stay where it is put; an ornament will not move by itself.

The weather changes of course and the seasons progress, and both are im-

portant environmental factors that can have profound effects on people with

autism in particular. However, the most unpredictable and disconcerting factors

in the environment are people.

People are not always predictable. They move around with a will of their

own; they look different from day to day; they make noises, some familiar,

some not; they are sometimes animated, with their mouth turned up at the

corners, sometimes quiet, with their mouth turned down. People make demands

of you, but it is often hard to know what it is they want. Sometimes they let

you do certain things; sometimes they try to stop you. Sometimes they are

encouraging and sometimes they get angry and criticise. They seem to change

the rules from day to day.

From the point of view of a person with autism or Asperger’s disorder,

people are a conundrum. Sometimes they even appear threatening and are to

be feared. People with autism tend to have less power than the rest of us and

we are all wise to be wary of those who can exercise power over us.

People with autism or Asperger’s disorder lack many skills that we take for

granted and have many difficulties that are hard to comprehend. The most

obvious difficulties are with the social use of language. Even the most verbally

able, literate people with these disorders, who may have a wide vocabulary,

find it impossible to engage in a mutually rewarding conversation with another

person. The ability to accommodate the thoughts, ideas and feelings of another

is missing. This inability to exchange thoughts, ideas and feelings means that

they cannot exert influence or engage in debate or negotiate for themselves. It

is left to the carer or educator to anticipate their needs and even to advocate

for them. People with autism, no matter how intelligent, are left in a powerless

position in the social world, at the mercy of others. It is little wonder, then,

that they sometimes act out of fear and frustration.

People with autism and Asperger’s disorder tend to have great difficulty in

generalising concepts and have a literal understanding of what they see and

hear. They have difficulty with anticipating the behaviour of others, being un-

able to use theory of mind, the ability to imagine how others think and feel.

They tend to lack the ability to plan ahead, to anticipate how to organise a

series of actions to achieve a desired outcome. They depend on others to make

desirable things happen and to preserve the familiar. They depend on others to

maintain an environment that is sympathetic to them and their changing needs.

This inability to understand the world they live in and in particular the

social world goes some way to explaining their love for the familiar, for order

Minimising disturbed behaviours

and routine. Bricks and mortar and objects are predictable and therefore safe,

provided they are not interfered with by the human element, which inevitably

introduces incomprehensible demands, change and uncertainty.

Without the power that comes from the use of language, without the ability

to understand why things happen and especially the motives of people who cause

them to happen, and without the control over the environment that we take for

granted, people with autism are forever at the mercy of events. They have little

understanding of the people they depend on and little ability to influence them

in a constructive way. All too often those who can exercise such powers recip-

rocate this lack of understanding. People with autism and Asperger’s disorder

are often seen as incomprehensible folk who live in a world of their own and

choose not to engage with others. They may be regarded as malign beings who

deliberately behave badly. It is little wonder then that they sometimes have to

resort to difficult behaviours to influence the world around them.

Of course, drugs may be used to reduce the undesirable behaviours. This

course of treatment is often indicated by the medical model, which seeks to

treat what may be seen as underlying anxiety or psychosis. However, there are

costs to be paid for using drugs. Apart from the financial ones, there are the

side-effects of major tranquillisers, addiction, reducing effects over time and

the even more undesirable behaviours and conditions that can result from

cocktails of powerful drugs.

Experience has shown that by paying proper attention to the environment,

the use of tranquillising drugs can be reduced to very low levels indeed and

even stopped altogether. The development of specialist homes and schools for

people with autism and related disorders in the UK over the past two decades

has improved their lives and prospects considerably. By concentrating on getting

the environment right in the first place, the factors that cause the behaviour

that leads to the prescription of tranquillisers have been to a large extent

eliminated. Those of us who are engaged in social care in these more enlight-

ened times are much less reliant on psychiatric interventions than we were in

the not too distant past.

WHAT CAN WE DO TO IMPROVE THE ENVIRONMENT

FOR PEOPLE WITH AUTISM AND RELATED DISORDERS?

Educators and carers can start by accepting that people with autism and

Asperger’s disorder do not choose to have their disability. It is not their choice

to be isolated from pleasurable and rewarding social interaction with the people

around them. People with autism and related disorders have many needs and

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desires and rights that ought to be expressed, negotiated for and defended. It

is up to carers and educators to recognise that the inability to communicate

effectively and mutually beneficially is a shared one that both parties need to

work at. People with autism do not have the ability to help themselves, but

those charged with the responsibility of caring for them certainly should help.

There are particular areas we can be careful to address. These are the social

aspects of the environment, where we know that people with autism and

Asperger’s disorder are particularly disadvantaged, and the physical aspects,

over which we exercise such control.

Social interaction

Social interaction is usually stressful, sometimes even painful, for people with

autism or Asperger’s disorder, and so our behaviour and expectations must

take account of this.

For most of us, social interaction is not only pleasurable but also very neces-

sary for our mental health and well-being. Social exclusion is one of the most

hurtful ways of treating somebody. One of the favourite tools of punitive or

oppressive regimes is isolation, which is also often used as a punishment in

prisons. The thought of social exclusion or isolation is so abhorrent to most

professionals and carers that they will put pressure on people with autism or

Asperger’s disorder to engage with others and to join in activities. This can

have an extremely detrimental effect. Great sensitivity has to be exercised in

encouraging them to join in what they might enjoy, while at the same time

recognising those activities they do not. They do not learn social behaviour

merely from exposure to a sociable peer group.

People with these disorders should neither be forced to join in nor excluded.

They need opportunity and gentle encouragement over time. Try to judge

whether a particular social activity would be rewarding for an individual or if

that person might benefit from something different. Many people with autism

or Asperger’s disorder would not be happy with a noisy, unstructured activity,

but would prefer a more structured one in quiet surroundings, perhaps with

less direct interaction with people.

Social communication problems are normal for people with autism or

Asperger’s disorder and to be expected; carers and educators must learn to

understand and communicate with each individual.

Understanding the difficulties that people with autism and related disorders

have with language and communication, carers and educators must learn to

communicate effectively. People with autism all share similar problems, but

they are still individuals and we must learn to adapt effective practices and

Minimising disturbed behaviours

principles to the individual. Generally speaking, we must learn to use fewer

words, to emphasise key words and to avoid ambiguity, especially metaphors,

similes and irony. Making jokes is probably best avoided altogether unless you

know the individual extremely well.

Their behaviour may well cause stress and anxiety to those with whom they

live.

People with autism often have to live in mixed communities of people with

disabilities and their behaviour can cause distress to others. This in turn may

lead to them being ostracised or, even worse, to the detriment of all concerned.

Social mixing must be carefully planned to minimise distress. To avoid social

problems it is advisable to be very careful about placing people with autism

and related disorders with others. Behavioural characteristics that are accepted

by one individual may cause severe problems for another. It is not reasonable

to blame people with autism for behaving the way they do – they are merely

responding to their environment and the difficulties they are experiencing.

Neither is it profitable to blame the one who cannot tolerate the other. It is

better to mix people together who do not antagonise each other.

onment

Privacy and personal space are important, but this must be balanced by ade-

quate supervision of people who are often unaware of common dangers.

onment

• Safety aspects of furniture and fittings are important. Equipment is likely to

be misused, so the potential to cause injury must be assessed and minimised.

• Robust furniture and fittings will reduce pressure on staff. Equipment should

not be so vulnerable to misuse that carers and educators have to be overly

protective of it. This will reduce the potential for conflict.

• Levels of physical security, both inside and out, must be considered. How

easy is it for people to absent themselves unnoticed? Is there a degree of

surveillance outside? Are there procedures for attending to someone who is

leaving the site, and are all staff aware of what they should do?

• Noise levels should be considered – hypersensitive hearing is common in

autism and Asperger’s disorder. The radio or television is often left on not

for the benefit of those being cared for or educated but for the sake of the

employees. Loud music or voices are at the very least distracting to people

who have difficulty in discriminating between what they should attend to

and that which they need not. At worst, loud noises (and, for some people,

even the tone or pitch of a noise) can be physically painful and cause

considerable distress.

Physical envir

Physical environment

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