evidence & practice / children’s nursing

AUTISM

Caring for children with autism spectrum

condition in paediatric emergency departments
Richards B (2017) Caring for children with autism spectrum condition in paediatric emergency departments. Emergency Nurse.
25, 4, 30-34. Date of submission: 17 March 2017; date of acceptance: 15 May 2017. doi: 10.7748/en.2017.e1713

Ben Richards Abstract

Senior staff nurse, King’s
College Hospital, paediatric
emergency department,
London, England
Correspondence
ben.richards1@nhs.net
The needs of children with autism spectrum condition (ASC) in paediatric emergency departments
(EDs) can often be overlooked. EDs are high-stress environments for children with ASC, which can
result in meltdowns, making the diagnostic process challenging. There should be provision for
children with ASC, who can have sensory, behavioural and communication needs, in the same way
that analgesia is provided for children in pain. This article promotes a multi-strategy approach to
making reasonable adjustments to help meet the needs of these children and provide them with a
positive hospital experience.

Conflict of interest Keywords

None declared
Peer review
This article has been subject
to external double-blind
peer review and checked
for plagiarism using
automated software
autism, autism spectrum condition, challenging behaviour, communication resources, learning
disabilities, paediatric emergency department
Introduction
Paediatric emergency departments (EDs) are
challenging environments for children with
autism spectrum condition (ASC) and the nature
of emergency presentations means there is often
no time for families to prepare for attendance.
Healthcare professionals generally have a
poor understanding of ASC and the associated
challenges in relation to communication. The
combination of communication problems and
bright, loud EDs can result in frustration and
anxiety in children with ASC, which in turn can
lead to disruptive behaviours (Browne 2006).
ASC is one of the most severe conditions in
terms of behavioural challenges (Drake et al
2012), and one negative experience of hospitals
can result in anxiety about future visits
(Sounders et al 2002). Therefore, it is essential
that ED staff get it right first time.
Autism spectrum condition
Around one in 100 people have ASC (NHS
Information Centre 2012). Children with ASC
have a greater number of healthcare needs than
the general population (Emerson and Baines
2010), yet their experience of hospitals is
frequently negative (Owley 2004, Iacona et al
2014, Mackenzie et al 2013). Various reports
have highlighted serious failings in the care of
patients with a range of disabilities (Mencap
2004, National Patient Safety Agency 2004,
Disabilities Rights Commission 2006, Mencap
2007, 2010), which indicates the need for
improvements in practice and understanding.
There are three main characteristics
associated with ASC (Browne 2006):
»» Differences in sensory perception
and responses; this can be hyper- or
hyposensitivity to the five senses, in
particular pro-perceptive awareness.
»» Impairment of thought and behaviour,
with rigid thought processes and a lack
of imaginative play.
»» Impairment in language, communication and
social interaction, difficulty picking up facial
expressions, gestures and social timings,
taking a literal interpretation of language,
and often preferring visual cues.
However, it is important to remember that
people with ASC are individuals and do
not all fit this description. It should also
be noted that people with ASC can have
difficulty understanding and regulating their
own emotions. They may not be able to
label the emotions they feel in a situation, or
communicate what it is that has made them
feel a certain emotion effectively.
The challenges associated with understanding
and labelling emotions can make it extremely
difficult for people with ASC to regulate their
emotions independently. They may not know,
understand or be able to use strategies that
could help them decrease their anxiety.
People with ASC cannot always understand
the purpose of a situation, for example that
a procedure can result in a long-term positive
outcome. This can be exacerbated by lack of
flexibility of thought, making it a challenge to

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link items together or to predict a sequence of information to enable positive communication Online archive
events. Autistic brains can work in a singular between healthcare professionals and patients For related information,
pattern and people might not be able to carry with ASC (Bell 2012, Gearner Thompson and visit emergencynurse.
out two things at once, or link two related, or Tielsch-Goddard 2014). co.uk and search using
the keywords
unrelated, items together. There are various types of hospital passport
in circulation. The traffic light hospital
Improving practice passport (Access to Acute Hospitals Network
When interpreting these challenges in the 2011) has been adopted by many NHS
context of hospital environments, people with trusts, while the National Autistic Society
ASC face a range of difficulties, including poor (NAS) (2015), in conjunction with the DH
communication by healthcare professionals, Think Autism strategy (2014), has designed
a lack of communication tools, lack of a passport with sections on communication,
appropriate environments, increased sensory expressing pain and issues that cause
stressors and inadequate understanding by, distress. Each section has representative
and training of, clinicians about the condition images of important words and phrases to
(Phillips 2012). enable greater understanding for patients
It is important to remember that children with ASC (Figure 1). While both passports are
with ASC have several characteristics and/or effective in conveying a range of important
impairments, therefore practice improvements
and reasonable adjustments require a multiple
strategy approach. It is essential to address the Figure 1. One-page hospital passport for children with autism spectrum condition
spectrum of impairments to reduce barriers
to diagnosis. The multi-strategy approach
suggested here can be broken down into three My hospital passport
aspects with related solutions:
NHS number ..........................................................................................................................................................................................................................................................................
»» Address language, communication and social
interaction impairment by using a hospital
My name ..................................................................................................................................................................................................................................................................................
passport, which is a visual document that
highlights communication challenges to I liked to be called ..............................................................................................................................................................................................................................................................
health professionals, and using appropriate
communication tools.
How I would like you to communicate with me:
»» Address differences in sensory perception,
and thoughts and behaviours, with ‘coping
kits’, social stories, appropriate areas for
children with ASC to wait while in EDs,
and keeping the number of staff treating the
children to a minimum.
»» Give healthcare professionals the skills
and confidence to communicate better How I let you know if I’m in pain:
with people who have ASC, recognise
deteriorating behaviours, and employ
strategies through training and education.
»» Implementation of these strategies, using
hospital passports and ‘coping kits’, reducing
environmental stressors, and training staff,
can help to improve the experience of Things that upset me are:
children with ASC in paediatric EDs.

Hospital passport
A hospital passport is a document that provides
important patient information to healthcare
professionals. Alongside personal data, such
as name, age and hospital number, it should You can avoid distressing me by:
contain information about communication, how ..................................................................................................................................................................................................................................................................................
the person experiences pain, important likes
and dislikes, and space to list other important Other things you should know about me:

details. Hospital passports are recommended ..................................................................................................................................................................................................................................................................................

as good practice by the Department of Health ..................................................................................................................................................................................................................................................................................
(DH) (2009, 2014), and provide important

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evidence & practice / children’s nursing

information, they are six pages long, making

Figure 2. Social story
them impractical for EDs.
Passports do not work when they are not read
(Bell 2012), and in busy EDs, with waiting-time
pressures, health professionals might ignore
lengthy documents. ED visits are unplanned,
and therefore it is not possible to adequately
prepare children beforehand. To be used
effectively in EDs, hospital passports should
be one-page records and present important
information in a format that that can be read
quickly in a time-pressured environment.
One-page passports are quick to fill out
and contain basic patient details, such as how
children like to be communicated with, how
they exhibit pain, what upsets them and how to
avoid triggers, and other important information.
Each section is illustrated with appropriate
imagery. w is an example of a one-page passport
adapted from the NAS six-page version (2015).
If families attend without a hospital passport,
Figure 3. Visual support pack it would be easy for ED staff to ask them to fill
out a one-page passport at triage while they wait
to be seen. This would give every child with ASC
who passes through an ED a hospital passport,
thus helping health professionals communicate
better, increase awareness of the child’s ASC, and
identify and remove potential stressors. Passports
can be scanned and saved onto patients’
electronic records, so they are available for
future visits to other hospital departments.

Coping kits
Hospital passports alone are not enough to
meet the needs of children with ASC in EDs.
The time spent waiting to see clinicians should
be considered as well as the stressors placed
on children’s often highly sensitive sensory
perceptions, as bright, loud and busy waiting
rooms can cause sensory overload. Lack of
social imagination can further increase anxiety
in children with ASC, when they are unsure
about what will happen next. Coping kits
can help to address some of these anxieties
and should contain social stories about an
ED (Figure 2), communication tools such as
a visual support pack with a timetable of the
hospital visit (Figure 3), a tablet computer,
sensory toys for distraction and ear defenders
to reduce waiting room noise.
Social stories are short, visually guided
narratives that describe to children with ASC
how people respond in different situations
and/or environments. They can target certain
behaviours or inform children about new social
settings (Gray 2000), and can reduce anxiety-
driven disruptive behaviours (Rhodes 2012).
The aim of using social stories in EDs is to
positively describe average patient journeys

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through the department. Each step should be consuming, increases the likelihood of making
described positively, using minimal language a diagnosis and is less distressing for the child.
and, ideally, be illustrated with an appropriate
picture. For example, the triage stage could be Staff education
described as ‘the nurse will check to see if I am The third strategy for improving the
okay’, with a picture of the triage room and experiences of children with ASC in EDs is
a nurse. Social stories show what will happen increasing emergency clinicians’ knowledge
next and aim to reduce anxiety in children who
rely on rigid routines for security.
There are limitations to using social stories in Figure 4. Listening to my chest
EDs. For example, they are unlikely to be used
before arrival, due to the emergency nature of
presentations, and it might not be possible to
read the stories in the department before triage.
Although they are helpful, generic social stories
are not effective for every child, as those with
ASC have different abilities.
Combining social stories with a hospital
visual support pack can help personalise the
story for each hospital visit. Hospital visual
support packs are booklets that open to reveal
various symbols ranging from ‘X-ray’ and
‘observations’, to ‘waiting for the doctor’ and
‘food’. One side of the booklet should display
a range of symbols on Velcro, which can be
placed in the correct order on a strip on the
corresponding side of the booklet. This enables
parents and children to see what will happen
next, and can help reduce anxieties about the
unknown (Figure 3). This can be combined with
storyboards for routine procedures, such as
‘listening to my chest’ (Figure 4), and ‘taking my
temperature’ (Figure 5), thus providing image-
based communication to support a range of
situations. Picture symbols can be obtained free
online from organisations such as Sense (2016).
In addition to social stories and image‑based
communication tools, coping kits should Figure 5. Taking my temperature
contain sensory toys, picture-exchange
communication systems, and an electronic
tablet with cartoons and games for distraction
while waiting, or during procedures (Hudson
2006). These items can help decrease children’s
anxiety and reduce the risk of meltdowns
(Drake et al 2012, Gearner-Thompson and
Tielsch-goddard 2014). The kits should be
held in convenient locations and used by
trained nurses who regard them as positive
tools. Sensory toys can be obtained from
organisations such as Starlight (2017).
Where possible, a no-wait policy and a
separate cubicle for waiting can further reduce
environmental stressors. Clinicians should
consider the overall time saved by making
these adjustments. Attempting to examine
anxious children with ASC is problematic for the
children and time-consuming for staff, and can
make the diagnostic process very difficult. Caring
for children with ASC quickly can be less time-

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evidence & practice / children’s nursing
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References
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of the condition. Lack of understanding
or training is consistently identified as a
cause of poor care of this patient group
in hospitals (Owley 2004, Mencap 2007,
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training that increases clinicians’ confidence
and knowledge is a positive step.
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(Autism Teaching Tool 2017):
»» What autism is and what it looks like in
everyday life.
»» Main characteristics of autism, and how
these can cause challenges in hospital
environments, with the understanding that
everyone with ASC is unique.
»» Recognition of escalating anxiety levels and
behaviour management.
»» Types of communication, expressive
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understanding.
»» The importance of a psychosocial nursing
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»» Communication tools and their use, social
stories, picture exchange communication,
choice boards and visuals, and minimal
language approach.
»» Ideally, training should be delivered by a
local learning disability team, or learning
disability clinical nurse specialist, in
conjunction with a paediatric ED link nurse
with a special interest in ASC.
Conclusion
ASC is a spectrum, so it is impossible to
create or implement a strategy that will suit
all children with the condition, and the nature
of EDs means it is impossible to prepare
children for attendance. However, a multiple-
strategy approach to making reasonable
adjustments is essential for working towards
successful, calm attendances.
A one-page hospital passport filled out
by families at triage can alert clinicians to,
and help them feel more confident about,
managing communication difficulties, and
coping kits should be available to help
reduce environmental stressors. Moving
children to a quieter area, prioritising
management, undertaking only essential
clinical interventions, and recognising triggers
and escalating behaviours through training
and education can help improve experiences
of EDs for children and their families.
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