Coping Strategies
The vast majority of individuals with an Autistic Spectrum Disorder (ASD) have anxiety
levels well above those of the neurotypical (NT) child or adult. Key reasons for these
high levels of stress include:
◈ Theory of mind deficits (difficulties understanding the perspective of other people,
empathy)
◈ Communication – verbal and non verbal
◈ Lacking a shared sensory environment
◈ Poor understanding of social cues
◈ Dysexecutive functioning (problems with planning, sequencing)
The individual with ASD is likely to have problems in many, if not all of these areas, to a
greater or lesser extent. Ultimately, the outcome will be an individual who finds it difficult
to understand the way in which they are expected to interact and communicate in
everyday life, and who may have very little in the way of stability – i.e. areas of life which
they can depend on as constant and consistent.
It may well be the case that under such circumstances the individual creates their own
areas of stability – much in the same way that neurotypical individuals need constancy
and stability, so does the individual with ASD. Whereas the neurotypical individual gains
stability by being able to communicate effectively, to understand social situations, cues,
and non verbal communication, having an effective mentalising ability (i.e. the ability to
understand the mind set of other people), and so on, the individual with ASD is likely to
have significant differences in their development of the same skills. Thus, in a world
dominated by neurotypicals, the individual with ASD is at a major disadvantage, and
needs other methods to employ to reduce their own anxiety.
For many individuals there are key areas of daily life which they rely on to be stable –
this does not necessarily always mean the same, but often the ‘sameness’ of the key
areas is of paramount importance. The idea of ‘stability’ is a crucial one when working
with individuals with an ASD. It is sometimes useful to make comparisons with the
neurotypical world in order to better understand the ‘resistance to change’ often
experienced by the person with ASD.
It could be argued (strongly) that the neurotypical population is one which leads life
predominantly based on a great deal of stability. For example, if one were to assess an
average 24hour period from an ‘average’ persons life the chances are that the vast
majority of that period could be considered ‘stable’. The reasons for stability include the
very skills or abilities that people with ASD are likely to have problems with (see above).
It is highly likely, therefore, that the individual with an ASD is going to be very unstable
on a day to day basis. What the individual needs are key points during the day which
can be relied upon in order to maintain some semblance of stability. These key points
will be different from one person to the next. Examples include: needing to go via the
Coping Strategies
Luke Beardon, Senior Lecturer in Autism
Sheffield Hallam University
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same route to school every day; insisting on a particular order for a routine; requiring the
same answer each time to a repeated question – the list of examples is endless;
needless to say each individual will have different points of stability to his or her day. If
there is a ‘routine’ which has been set up – going to school by a certain route, for
example – it is highly important that this is recognised that it is likely to be a point of
stability for that individual. Changes in the points of stability for the individual are likely to
be highly problematic for them. If an individual relies heavily on a point of stability (of
which there are likely to be few) and this is then altered in some way, it would be
sensible to suggest that this would cause major concern for the individual. This is the
‘autistic resistance to change’ so often quoted – not, necessarily changes in everything,
but changes in aspects of stability for the individual. I suspect that this is the reason that
so often the individual may become distressed over what the NT person would see as
trivial. It may be trivial to the NT, to the individual with autism it is a key point of
dependability. Thus, deliberately changing a known point of stability for the individual
should only be undertaken after considerable consideration of the implications. In the
same way if one were to change a neurotypical individuals stability – not allow them to
communicate, for example – they would be likely to become very anxious, frustrated,
stressed, depressed, etc. – so too do many individuals with ASD. Just because the
points of stability are different for the person with ASD does not mean that they are any
less meaningful.
Coping strategies are often used by individuals with ASD to reduce the anxiety felt in
every day situations that can not be compensated for in the neurologically typical ways.
The strategies themselves can manifest themselves in any number of different ways,
and may be unique to the individual. It could be argued that each of the strategies used
has a key component which is similar in all cases. It is suggested that all coping
strategies need to be in the control of, or appear to be in control of, the individual or, that
the individual has clear identifiable and recognisable boundaries around access to the
strategy.
It would be impossible to list all coping strategies used by individuals with ASD. It is
possible, however, to group strategies together – a preliminary list would include:
◈ Physical
◈ Routine
◈ Repetitive speech / questioning
◈ Attachment to objects
Physical
Physical coping strategies may include flapping, rocking, twirling in one spot, or any
other physical repetitive movement. Some individuals with ASD have reported a ‘need to
flap’ at times of stress, and that the movement has the effect of relieving anxiety.
Coping Strategies
Luke Beardon, Senior Lecturer in Autism
Sheffield Hallam University
2
Routine
Many individuals rely on routines as a stress reducing mechanism. Routines themselves
can take on any number of forms, from insisting on performing tasks in a set pattern, to
relying on journeys to be taken in exactly the same route each time.
Repetitive speech / questioning
At times of stress it has been observed that some individuals will repeat speech, often
using echolalic phrases. Other individuals will repeat the same question over and over
again, insisting on the same answer. In reality this repetitive questioning could be seen
as similar in nature as a routine.
Attachment to objects
Some individuals will insist on having objects close to them, or on their person, which
they can rely on to use as a coping mechanism should the need arise. The objects
themselves can be of any nature, from toys to bits of string to an article of clothing.
Some may be specific – e.g. a particular toy; other may be generic – e.g. any string will
do.
Some individuals will give a name to their object of attachment, others may even seem
to see them as ‘real’, and insist on talking to them or using them as a medium for
communication.
Potential Difficulties
At the outset it would appear that coping mechanisms are inherently a good thing – they
allow the individual to cope in a world that, by nature, they find confusing and full of
stresses which are difficult to understand. However, there are some areas of potential
difficulty which need to be addressed:
◈ The coping mechanism is unacceptable
◈ The strategy is socially unacceptable
◈ The strategy appears age inappropriate
◈ The individual refuses to engage in any other activity
◈ It is likely that the strategy can not be relied on
The coping mechanism is unacceptable
There are some strategies which are unacceptable at any level – these would include
self injury, harm to others, and destructiveness of property, for example.
Coping Strategies
Luke Beardon, Senior Lecturer in Autism
Sheffield Hallam University
3
The strategy is socially unacceptable
There are many strategies which, in isolation, are acceptable – but, in some
circumstances would not be socially acceptable. Unfortunately, many strategies which
do not harm anyone else are still seen as socially unacceptable for the majority of
individuals. For example, it would be deemed inappropriate for an adult to insist on
bringing bits of string to the workplace to occasionally ‘twiddle’, despite it not affecting
anyone else and at the same time enabling the individual to cope with the daily problems
of living in essentially and ‘autism unfriendly’ world.
The strategy appears age inappropriate
Age inappropriateness is very much ‘in the eye of the beholder’ thus, what may be seen
as perfectly reasonable by one person may be deemed inappropriate by another.
Unfortunately, as society tends to be governed to a great extent by what is seen as ‘the
norm’ individuals are marginalised if they are seen as age inappropriate. Not only is this
unfair for the individual, it is also not a rule that is applied in al situations. Toys are, for
example, generally deemed inappropriate for adults to play with in ‘normal’ every day
activity. Yet many adults will have train sets which are, after all, simply a sophisticated
version of a toy. Cuddly animals are not considered appropriate for adults to carry
around with them, and yet how many adults still have their favourite cuddly toy kept from
childhood – or even buy one another such items as adults. The rules seem to change
from one circumstance to the next – and rarely in favour of the individual with ASD.
The individual refuses to engage in any other activity
Clearly under such circumstances the individual requires support holistically. This does
not, however, automatically mean that the coping strategy should be eliminated.
It is likely that the strategy can not be relied on
If an individual is reliant, for example, on the school bus consistently using the same
route to school, it is likely that at some point circumstances will change as will the bus
route. Road works, a change of driver, whatever the reason there is a significant chance
that the routine can not be relied on. This, then, is a consideration for those supporting
the individual.
Ethics
The first key point to make when considering the ethical boundaries about how to
support an individual is the coping strategy itself. One of the most important questions to
ask is, after stripping away all of the environmental factors, can the strategy be used
within appropriate boundaries. This includes taking into account the problems of age
appropriateness. Ultimately, the needs of the individual come first – the concept of age
appropriateness itself comes from a neurotypical society, so is it fair that the same
‘values’ be placed onto the person with ASD? Even if these ‘values’ are taken into
account, the need for the individual is still present, balanced with the potentially negative
responses of society. As an example, consider a 15 year old individual with ASD who
has an attachment to a toy which is regarded as the type of toy a 3 year old plays with.
This 15 year old needs the toy with him at all times in order to be able to cope with every
day life, but is constantly being bullied by his peer group. What are the ethical dilemmas
Coping Strategies
Luke Beardon, Senior Lecturer in Autism
Sheffield Hallam University
4
in this scenario? Firstly, age appropriateness. It could be argued that whatever is
appropriate to the needs of that individual is, automatically, appropriate to his or her age.
This would be a stance that would truly be needs led and one that, should society take
on board, would be likely to be beneficial to all. However, are the needs of the individual
really being met if the bullying continues? It is unlikely that all of society is
simultaneously going to accept the idiosyncratic behaviours of all individuals with ASD,
so the fact remains that in the eyes of his peer group, this individual is going to be seen
as a target. The dichotomy is between on the one hand the autistic need of the
individual, and on the other a non accepting society. Both have a direct impact on the
needs of the individual. In this scenario, and many other similar ones, the support should
be about putting appropriate boundaries around the coping mechanism, while not taking
it away.
Boundaries
If a strategy is not deemed inappropriate (see above) then the individual needs to be
able to employ boundaries around the strategy in order that their needs are still met. As
a key rule, unless the behaviour or strategy is totally unacceptable (which is relatively
rare) then only as a very last resort should a coping mechanism be taken away from the
individual. Ultimately, if this is done, one of the very few areas of stability for that
individual has been taken away – which is likely to greatly increase the stress levels of
that individual.
Rather than stripping the person of what is, after all, something which they need in order
to cope with every day life, the individual needs support around how to use those coping
mechanisms in a way which is not going to cause them additional problems. This is
where the concept of boundaries is a useful one.
Examples
1. An individual has a toy – deemed inappropriate by his peer group. Rather than take
the toy away from that individual it may be more beneficial to teach the individual not
to display the toy in public. If the toy is a large one then one possibility would be to
encourage the individual to carry around a photograph of it instead, which can be
kept hidden from the peer group. Alternatively the individual may be able to cope
with carrying around a part of the toy, rather than the whole thing – again, the
boundaries are that the toy is kept out of sight.
2. The adult in an employment setting insists on taking in string to ‘twiddle’. In this case
it would seem useful, rather than taking away the string – and, thus the individuals
coping mechanism – teach the individual to ‘twiddle’ in a toilet cubicle, out of sight of
the other employees.
3. An individual insists on talking about a specific topic constantly to everyone he
meets. One possible solution would be to teach the individual that it is perfectly OK
to talk about this topic, but only if the conversation is initiated by someone else first.
Alternatively, that he can talk about the topic but only to one designated person. Or,
possibly, that he can talk about the topic but only at certain times during the day.
Each of these examples highlight the key considerations – that unless absolutely
necessary the coping mechanism itself should not be taken from the individual; and that
Coping Strategies
Luke Beardon, Senior Lecturer in Autism
Sheffield Hallam University
5
boundaries around the strategy are key to enabling the individual to employ them without
additional difficulty.
Luke Beardon
Senior Lecturer in Autism
Sheffield Hallam University
28.11.02
Coping Strategies
Luke Beardon, Senior Lecturer in Autism
Sheffield Hallam University
6