Caring for the Child With an Autism Spectrum
Disorder in the Acute Care Setting
Nina Scarpinato, Jana Bradley, Kay Kurbjun, Xenia Bateman, Brenda Holtzer, and Beth Ely
PURPOSE. This article explores the challenges
that patients with autistic spectrum
disorders (ASDs) face when hospitalized and
provides assessment strategies and
plan-of-care suggestions for nursing
caregivers.
CONCLUSIONS. With a high prevalence rate of
medical comorbidities among this population,
such as gastrointestinal complaints and
seizures, nurses are likely to care for
hospitalized patients with an ASD.
PRACTICE IMPLICATIONS. For a child with
an ASD, hospitalization can be an
overwhelming sensory and cognitive
experience. Nurses equipped with an
understanding of the unique needs of a child
with ASD can tailor the plan of care to
reduce patient and family anxiety, optimize
treatment goals, and reduce the stress of
hospitalization.
Search terms: Autism, autistic spectrum
disorder, hospitalization, medical condition,
medical management, nursing care, plan of
care
First Received November 11, 2009; Revision received February 3,
2010; Accepted for publication March 25, 2010.
244
doi: 10.1111/j.1744-6155.2010.00244.x
jspn_244 244..254
Nina Scarpinato, PMHCNS-BC, CRNP, is a Behavioral
Health Clinical Nurse Specialist; Jana Bradley, MSN,
CRNP, is a Clinical Nurse Specialist; Kay Kurbjun,
MSN, RN, is a Clinical Nurse Specialist; Xenia Bateman,
MSN, CRNP, is a Clinical Nurse Specialist; Brenda
Holtzer, PhD, RN, is a Clinical Nurse Specialist; and
Beth Ely, PhD, RN, is a Nurse Researcher, The Children’s
Hospital of Philadelphia, Philadelphia, Pennsylvania,
USA.
T here is an increasing societal awareness in identification
of children with autism spectrum disorders (ASDs). Kogan
and others (2009) recently reported prevalence of parent-
reported ASD for children ages 3–17 years in the United
States as about 1% or 110 per 10,000 children. Almost half
(49.6%) of the parents surveyed rated their children’s ASD
severity as “mild.” Using the most current and widely
adopted prevalence statistics, the Centers for Disease Control
and Prevention (2009) estimated that there are approximately
560,000 children across the United States between the ages of
birth and 21 years living with an ASD. The prevalence of
children with ASD has now surpassed rates for children with
well-known conditions such as cancer, Down syndrome, and
spina bifida (Filipek et al., 1999; Muhle, Trentacoste, & Rapin,
2004).
As ASD prevalence rates rise, it becomes imperative for
nurses in any setting, primary or acute care, to understand
the unique challenges of this population. A planned inpatient
admission offers an opportunity to put patient-specific inter-
ventions into place that can diminish the anxiety provoked
by healthcare environments. An unplanned acute hospital
admission, however, can compound the significant anxiety
that a child with ASD experiences. Their physiologic status is
compromised, and their coping abilities, as well as those of
their families, are stretched. The varying levels of impaired
social interaction, communication, and stereotypical behav-
iors characteristic of the child with ASD can further heighten
the stress of the child and family.
The purpose of this article is to describe the challenges
that children with ASD face in coping with an acute hospi-
talization. In addition, we will discuss how thoughtful
nursing assessment and planning during admission and
throughout the child’s hospital stay can improve the expe-
rience for the child and family. While there is much litera-
© 2010, Wiley Periodicals, Inc.
ture available addressing diagnosis and treatment for
children with ASD, there is very little information about
best practices for providing care to children with ASD
when they are hospitalized. Therefore, we will use clinical
case studies from our practice experience to illustrate what
we have found to be helpful along with evidence from the
scientific literature.
Clearly, when a child with ASD has some need for access
to the acute inpatient healthcare environment, modifications
to the nursing plan of care are necessary. Some areas to
concentrate on include (a) working closely with the parents
of the child to better understand what strategies they employ
to help the child deal with stressors, (b) adding screening
questions to the initial nursing assessment to link parent
strategies to identified challenges, (c) recognizing how treat-
ment interventions might be perceived differently by a child
with ASD, and (d) modifying the physical environment for
safety. Keys to success include understanding the core symp-
toms of impaired social interaction; problems with com-
munication, and repetitive and stereotypical patterns of
behavior; and how the acute care environment challenges
those core symptoms.
Core Symptoms of Children With ASD
It is important to remember that ASDs are a spectrum.
Some children are more globally affected by the symptoms of
ASD, while others may have only minimal impairment. Cog-
nitive or physical impairments, such as mental retardation
or cerebral palsy, may confound an already complicated
picture. As with any illness, it is essential to avoid making
assumptions about a child’s ability based solely on his or her
diagnosis. A child who has an ASD is not necessarily cog-
nitively delayed just as a child with attention-deficit/
hyperactivity disorder is not always out of control. When
conducting an assessment, especially upon admission, it is
critical for nursing staff to ask thoughtful questions that
assess the individual’s experience of his or her illness.
ASDs fall under the Diagnostic and Statistical Manual of
Mental Disorders (4th edition, text revision; DSM-IV-TR) cat-
egory of pervasive developmental disorders (PDD), a diag-
nostic, as well as descriptive, term that reflects where and
how this disorder affects the life of a child (American Psy-
chological Association, 2000). Diagnosable disorders along
the PDD spectrum include autism, Asperger’s syndrome,
Rett’s disorder, childhood disintegrative disorder, and PDD
not otherwise specified. Both Rett’s disorder and childhood
disintegrative disorder share the diagnostic feature of a child
who achieves developmental milestones on time, but then
regresses or “loses” that skill. For the purposes of this article,
we will refer to ASDs including only autism, Asperger’s syn-
drome, and PDD not otherwise specified.
JSPN Vol. 15, No. 3, July 2010
Children with ASDs display impaired functioning in
three critical domains: the development of age-appropriate
social skills, language development and communication
patterns, and the non-normative development of restricted
interests or stereotyped behaviors (American Psychological
Association, 2000). The emergence of symptoms is usually
noted by parents when children are between the ages of 12
months and 36 months (Strock, 2004). However, “to diag-
nose true autism a child must meet 6 criteria as outlined by
the DSM-IV-TR, at least 2 criteria relating to the qualitative
social impairment, at least one criteria relating to impaired
communication, and one relating to range of interests and
activities” (Inglese & Elder, 2009, p. 45).
As stated previously, it is important to understand each
individual child’s experience of ASD. A child may display
marked impairment in one domain, such as difficulty with
peer relations, but have only minimal impairment in another
area, such as communication skills. Social impairment may
include difficulty interpreting and responding to emotional
cues of others, preferring to play in isolation, and difficulty
developing friendships with peers. The development of
restricted interests or stereotypical patterns of behavior is a
notable clinical feature to the diagnosis of ASD. These
restricted interests may be preoccupation with a toy, hobby,
or topic that is so intense that a child has difficulty transi-
tioning to other topics or activities (Souders, Freeman,
DePaul, & Levy, 2002). Children with ASDs may struggle
with transition in general or with even slight changes to their
daily routines. Stereotypical behaviors are repetitive motor
movements such as hand flapping, finger snapping, or
complex whole body movements (American Psychological
Association, 2000).
Impairments in communication can range from a com-
plete lack of spoken language to clear speech, but with
bizarre or inappropriate responses to context. Children with
ASD who have stronger verbal skills are sometimes referred
to as sounding like little adults and struggle to pick up on the
normal “give and take of a conversation” (Strock, 2004, p. 8).
The emergence of language is one of the criteria used to
assess and diagnose where on the spectrum a child might
fall. Those with a marked delay in language development
plus impairment in the other domains may fall into a more
“classic” autism diagnosis. For children who have no delay in
language but impairment in the social/communicative/
behavioral realms, a diagnosis of Asperger’s syndrome may
be more appropriate.
Another clinically significant, co-occurring phenomenon
often seen in children with ASD, but which is not part of the
diagnostic criteria, is hypersensitivity to sensory stimuli
(e.g., noise, touch). These sensory issues can be especially
challenging in the hospital setting given the abundance of
noise and number of people providing physical contact.
Thus, there are some potential challenges for a child with an
245
Caring for the Child With an Autism Spectrum Disorder in the Acute Care Setting
ASD that can be mitigated with awareness, assessment, and
attention to individualized challenges that the child may
encounter in the hospital setting.
Medical Comorbidities of Children With ASD
Certain conditions are known to be associated with ASD,
including seizures, sleep disturbances, gastrointestinal (GI)
disorders, and psychiatric disorders (Bellando & Lopez,
2009; Leyfer et al., 2006; Manning-Courtney et al., 2003;
Myers, Johnson, & the Council on Children with Disabilities,
2007). Not only are these conditions potentially injurious to
the child’s health and well-being, but also, they may cause or
complicate an acute care hospital stay.
The onset of epilepsy in children with ASD occurs at two
peak age ranges: before age 5 years and again in adolescence
(Barbaresi, Katusic, & Voigt, 2006; Myers et al., 2007). Preva-
lence rates for epilepsy among children with ASD are esti-
mated to range from 11% to 39% (Ballaban-Gil & Tuchman,
2000). Children with ASD who have more severe cognitive
impairment or motor deficits have a higher risk for epilepsy
than children with ASD who are less impaired (Pavone et al.,
2004; Tuchman, Rapin, & Shinnar, 1991). Exacerbation of
seizure activity may result in an acute admission for evalua-
tion and medication adjustments.
Sleep disturbances are common among children with
ASD and have been found to occur in 44–83% of children
with autism (Richdale, 1999). These disturbances have been
reported to occur in both children and adolescents with ASD,
and at all levels of cognitive function (Myers et al., 2007;
Richdale, 1999). Richdale (1999) identified several specific
sleep challenges for children with ASD, including irregular
sleep/wake patterns, problems with sleep onset, poor sleep,
early waking, and poor sleep routines. While the specific
cause of sleep disturbances among children with ASD is not
known, theories range from identifiable associated medical
conditions, such as sleep apnea or gastroesophageal reflux,
to social and communication impairments that may cause the
child to miss the routine and social cues that typically denote
a regular sleep/wake cycle and to disturbances in the body’s
production of melatonin, an important regulator of sleep
(Myers et al., 2007; Richdale, 1999).
Multiple studies have examined the correlation between
ASD, and GI symptoms (e.g., chronic abdominal pain, diar-
rhea, and constipation) and food sensitivities, such as aller-
gies or celiac disease (Horvath, Medeiros, & Rabszlyn, 2000;
Jyonouchi, Sun, & Itokazu, 2002; Pavone, Fiumara, Bottaro,
Mazzone, & Coleman, 1997). While results of these studies
have been mixed, leaving unclear implications for practice,
it is important to note that the general pediatric population
is known to experience GI problems quite frequently.
Indeed, the prevalence rate of constipation, the most
common digestive complaint in the general population,
246
ranges from 0.7% to 29.6% (van den Berg, Benninga, & Di
Lorenzo, 2006). However, recent research suggests that
there may be a behavioral association between constipation
and feeding issues/feeding selectivity in children with
autism, rather than an organic cause of GI manifestations
(Ibrahim, Voigt, Katusic, Weaver, & Barbaresi, 2009). In
practice, it is important to be aware that these feeding and
elimination behaviors (rather than organic conditions) can
complicate care. For example, a child with specific food
aversions may choose not to eat hospital food and then, in
turn, develop constipation.
While not a core symptom of ASD, behavioral and,
specifically, psychiatric or mental health co-occurrences
of mood disorders, aggression, or self-injurious behavior
appear to be more frequent in this population than in the
general population (Lecavalier, 2006; Ming, Brimacombe,
Chaaban, Zimmerman-Bier, & Wagner, 2008). One study of
487 school children between the ages of 3 years and 21
years, all of whom were receiving educational services for
PDD, found that both teachers and parents consistently
rated “physically harms self,” or “bites self” and “hits/slaps
self,” as being a moderate to severe problem (Lecavalier,
2006). Another study found the incidence of co-occurring
psychiatric disorders in their sample of 218 children to be
26%, with a mood disorder and aggressive/self-injurious
behaviors in 32% of children (Ming et al., 2008). This same
study also reported that the most common targets of aggres-
sion were mothers and younger siblings, while the most
common self-injurious behavior was biting of the hands/
forearms. Comorbid psychiatric diagnoses often include
specific phobia, attention-deficit/hyperactivity disorder,
obsessive-compulsive disorder, and major depression
(Leyfer et al., 2006). Be aware that these comorbidities may
either be a direct reason for acute hospital admission or
contribute to the problem list affecting the child’s plan of
care (Ming et al., 2008). Available data about prevalence rates
for comorbid conditions in children with ASD are variable
with wide ranges reported. Medical management of comor-
bid conditions may increase the possibility of acute hospi-
talization for a child with ASD.
Prevalence Rates for Acute Hospitalization of
Children With ASD
Nurses in primary and acute care settings frequently care
for children with ASD. Dosreis, Weiner, Johnson, and News-
chaffer (2006) surveyed 255 pediatricians in Maryland and
Delaware, and reported that 44% of them cared for at least 10
children with an ASD, while only 8% of those surveyed indi-
cated that they regularly screened for an ASD. In the acute
care setting, no prevalence rates have been reported in the
literature for children with ASD who are hospitalized with a
medical condition. However, given the well-established rise
JSPN Vol. 15, No. 3, July 2010
Table 1. Inpatient Admissions for Children With ASD a medical unit. Based on their primary diagnoses, the
Included in Their Problem List from January remaining children were inpatients on the surgical, critical
2008 to June 2009 (n = 216) care, cardiac, or oncology units (see Table 1). Our experience
is similar to prevalence rates reported in the literature for
By Primary Diagnostic Number of comorbidities with an ASD diagnosis, with epilepsy as the
Category (Diagnostic Admissions
most frequently occurring reason for admission.
Examples) (n = 216) Percent

ASD 2 1 Assessment Strategies to Guide Care

Neurologic (epilepsy, seizures) 77 36
Gastrointestinal (GER, constipation) 35 16 Assessment of the child’s unique needs can greatly impact
Respiratory (asthma, pneumonia) 22 10 the efficacy of his or her treatment plan as well as maintain
Behavioral disturbances (ingestion, 9 3 the well-being and safety of the patient and staff. When dis-
eating disorder) cussing the child’s plan of care, it is helpful to determine
Other (infections, renal disease, 71 33 successful strategies used in other settings (e.g., school, day
orthopedic problems) care) especially when the child encounters a new experience.
One of the more important clinical questions is whether the
By Department/Service n = 216 Percent
child has a developmental delay. Estimates indicate that 40%
Medical 163 75 of children with ASD have some cognitive impairment (Phe-
Neurology unit 77 36 trasuwan, Miles, & Mesibov, 2009).
Other medical units 86 40 When conducting a comprehensive assessment, it is
Surgical 28 13 important to recognize what questions are pertinent to ask
Critical care 23 11 beyond the scope of a traditional health assessment. A nurse
Cardiology 1 1 at the bedside is not expected to recall all of the criteria that
Oncology 1 1 go into the diagnosis of autism. However, an awareness of
the core features of autism and working closely with parents
ASD, autism spectrum disorder; GER, gastroesophageal reflux.
will help tailor a patient-specific plan of care. Some general
assessment points are listed below with more specific ques-
in ASD prevalence, it is reasonable to suggest that children tions detailed in Table 2.
with ASD are being seen in increasing numbers in acute care
settings. • Determine the patient’s developmental level; consider
To examine the prevalence of children with ASD who are grade level and school performance
cared for as inpatients at our facility, data from our electronic • Determine the level of somatosensory disturbances
clinical management system were reviewed over a recent (hypersensitivity to sounds, smells, touch, textures)
18-month period. We chose to examine inpatient hospital • Determine emotional disturbances (easily frustrated,
admissions only; these numbers do not represent total visits moodiness, easily overstimulated)
to the hospital for other care, such as for testing or day • Determine interventions that have worked for this patient
procedures. Data are from a large, acute care pediatric facility in the past
with 459 beds. During the selected 18 months, 216 children • Discuss effective communication techniques. For example,
were hospitalized as inpatients with a diagnosis of an ASD pictures may need to be used rather than words to show a
present in their problem list for the hospitalization (see child what is going to happen.
Table 1). Of these 216, only two had an ASD identified as the
reason for admission. The remaining 214 required care for Include specific questions about what medications the
either medical or surgical conditions. Epilepsy/seizures and child takes and how they are safely given at home. Williams,
other neurologic disorders were the most common reasons Dalrymple, and Neal (2000) found that 62% of parents
for admission (36%), followed by GI disturbances (16%), and reported difficulty giving medications to their children with
respiratory disturbances (10%). The remaining admissions ASD. Dietary adjustments may also be needed because tex-
were for a variety of medical, orthopedic, mental health, or tures, smells, color, and type of food may present a problem
other conditions. when providing adequate nutrition during hospitalization
We also evaluated where these children were cared for as (Ahearn, Castine, Nault, & Green, 2001; Field, Garland, &
inpatients in our facility. Findings were consistent with neu- Williams, 2003; Peregrin, 2007).
rologic disorders being the most frequent reasons for admis- Recognize that assessment is ongoing throughout the hos-
sion. From January 2008 through June 2009, 68% of the pitalization, especially because new situations and challenges
children with ASD admitted to our facility were admitted to may arise based on the child’s clinical condition. Contact

JSPN Vol. 15, No. 3, July 2010 247

Caring for the Child With an Autism Spectrum Disorder in the Acute Care Setting
information for the parent(s) and additional caregivers who
are familiar with the child is essential.
Planning Strategies to Aid in the Provision of Care
to a Child With an ASD
After conducting a collaborative assessment of treatment
goals and the child’s unique needs, consider how best to
achieve these goals using the child’s strengths and resources.
Utilizing Table 2 as a reference, we provide examples in the
following case studies about how the core symptoms of
autism, as well as the non-diagnostic but frequently encoun-
Table 2. Initial Assessment Questions Pertinent to the
Hospitalized Child With ASD
Impaired social skills
• How does this child tolerate new faces?
• How does this child react to other children his/her age?
To adults?
• Is this child sensitive to touch? Sensitive to noise?
• What is this child’s comfort with personal space?
• What is the best way to approach this child (e.g., touch
or stand back)?
Impairment in communication
• How does this child communicate? Verbally?
Nonverbally?
• Does he/she require the use of picture cards, writing, or
drawing?
• Is he/she uncomfortable with eye contact and prefer to
communicate with you via alternative means? For
example, an adolescent patient may feel more
comfortable communicating via text message than
spoken word.
• Is he/she able to understand emotional cues?
• How does this child report or show pain?
Restricted interests/stereotyped behaviors
• Are there any items of fixation for this child? If yes, how
does the family manage these?
• What are some things that potentially agitate this child?
Especially think of the current hospital environment.
• What early warning signs may indicate that this child is
becoming agitated?
• When this child becomes agitated or overstimulated,
what are the interventions that work best?
Inflexibility/adherence to routine
• What is this child’s schedule at home? How much can
the hospital’s routine mirror the child’s home schedule?
• How can I best prepare this child for any upcoming
transitions (e.g., a room change or preparation for a
test)?
• What has the family or school done that helps with
transition?
ASD, autism spectrum disorder.
248
tered challenges of hypersensitivity to stimuli and difficulty
with transition, may be addressed with a multidisciplinary
team approach.
Strategies for Intervention With Children With
Impaired Social Skills
While an inpatient admission does not offer the same
social interaction challenges that a child with ASD may face
in a school setting, for example, it does force the child to
interact with many new faces, asking multiple questions that
can prove to be quite difficult to integrate for even a child
without ASD.
Case example 1
In one inpatient setting, a nonverbal, 6-year-old child with
ASD was admitted for failure to thrive. He was accompa-
nied by his mother who remained at his bedside for his
entire admission. On the first day of admission, the entire
team of medical students, nurses, residents, and doctors
arrived at his room to conduct bedside rounds. Seeing this
large group of adults descend unexpectedly upon his
room, the child immediately became agitated. He tried to
run away and began aggressively hitting his mother. The
child was familiar with the bedside nurse who stayed with
him and was able to distract him from the team’s pres-
ence. This allowed the child’s mother to take part in
rounds, and the team planned to schedule time to meet
with the mother the next day and limit the number of care
providers entering the room.
As providers, we often forget how intrusive it can be to
have so many people entering the patient room, the only
“private” space a family has during an inpatient stay. For
patients who struggle with new faces, pre-assigning primary
nurses may help to provide consistency and help the child
develop trust (Thorne, 2007). For this particular child, the
number of people and the uncertainty of their roles resulted
in agitation, and the team needed to reconsider their
approach and their collaboration with the parent.
Case example 2
L.K. was a 10-year-old with Asperger’s syndrome admit-
ted for an asthma exacerbation. He was stabilized on room
air and every 2-hour albuterol treatments when the child
life therapist invited him to participate in an art activity in
the playroom. Going to the playroom was a bit of a chal-
lenge for L.K. He wanted to participate in activities there,
but initially would not go if other children would be there.
After a couple of visits to the playroom, he indicated
wanting to try being there when other children were
present. He was happy to go and participate, but his inter-
action with the others mostly involved watching them.
JSPN Vol. 15, No. 3, July 2010
 While the playroom may be a source of enjoyment for
many children, for a child with ASD, it may prove to be
overstimulating. Children with ASD are often unable to tol-
erate multiple sources of sensory input simultaneously
(Aylott, 2000; Nordahl et al., 2008). The inpatient setting is
rife with unique sounds, smells, and tactile encounters that
overwhelm the senses. Consideration should be given to
reduce as much ambient noise as possible. Monitor alarms
should be set to silent in the patient’s room if it is safely
possible. Keep hallway doors closed or utilize signs on the
door that indicate “Do Not Disturb/Please see nurse before
entering” to minimize noise and traffic into the patient’s
room. The team should also collaborate on how to minimize
medical interventions that could be difficult for the child. For
example, options such as spot-checking vital signs, as
opposed to continuous monitoring, could be considered if
they are safe alternatives.
Approaches to Communication With a Child
With ASD
One of the core issues for children with ASD is commu-
nication (Aylott, 2000; Chowdhury, 2009; Preston & Carter,
2009; Yoder & Stone, 2006). Recognizing that there are a
variety of communication impairments along the spectrum of
the disorder, individual plans need to be developed for each
child. Receptive and expressive language is a challenge for
most children across the autism spectrum, but in varying
degrees. Some children will have little to no language skills,
while others can give detailed descriptions of what they see
and experience. It is estimated that one third to one half of
children with ASD have minimal to complete lack of func-
tional speech, defined as the ability to convey a message to
others and understand the symbolic or representational
nature of speech (Preston & Carter, 2009; Yoder & Stone,
2006).
Common communication challenges for children with
ASD include problems with understanding nonverbal com-
munication, both in the ability to understand or “read” non-
verbal cues and an inability to transmit them. Especially
problematic are lack of eye contact, inability to recognize and
interpret facial expressions, and lack of understanding of
information communicated by hand gestures. Therefore,
communicating with clear, direct, simple sentences may
assist the child with an ASD. Be aware that facial expressions
and gestures often used to soothe or reassure a child in
distress may be ineffective when interacting with a child
with an ASD.
Developing an effective system of communication with
the child with autism can be one of the biggest challenges for
nurses. There are a variety of augmentative and alternative
communication systems developed for children with ASD,
including the use of sign language or symbol/picture
JSPN Vol. 15, No. 3, July 2010
systems to convey thoughts. These systems range from
picture boards to more complex electronic computer-based
devices (Preston & Carter, 2009; Yoder & Stone, 2006).
Preston and Carter (2009) reviewed 27 studies conducted
with children with ASD to evaluate the strength of the evi-
dence for the effectiveness of the picture exchange commu-
nication system (PECS). PECS is a system involving six
stages, starting with a very simple reward when the child
points to or reaches for a picture of what they want while a
“prompter” located behind the child encourages the child to
obtain the picture of the desired object from the trainer. As
the child becomes more skilled, more pictures are added to
the system, and the child is taught to name the object repre-
sented by the picture when prompted by the question, “What
do you want?” Preliminary evidence found that the PECS
may be useful for children with ASD who have minimal to no
functional speech (Preston & Carter, 2009). Unfortunately,
there is little evidence that the efficacy of this system is sus-
tained over time.
Nursing staff will need to develop a close partnership
with families and caregivers to establish effective and con-
sistent communication strategies for children with ASD. For
example, the family of a nonverbal child who communicates
with a communication board should bring the board with
them to the hospital. As well, staff should be open to com-
municating with these children with any alternative device
such as sign language or picture boards (Souders et al.,
2002). Clearly, using the system the child is familiar with is
important and may require some specialized training for
clinicians.
Case example 3
J.T. is a 13-year-old male with Asperger’s disorder who
was admitted to the adolescent unit with recent weight
loss, constipation, and refusal to eat. During the first 2
days of his admission, the nurse caring for him struggled
to communicate with him. He was often mute, made little
to no eye contact, and would not eat or drink even with
significant encouragement. On day 2 of admission, the
nurse noticed that J.T. was often text messaging on his
phone. The nurse and the mom worked out a system
whereby J.T. would text message his parent answers to
questions posed by the nurse and the nurse would answer
verbally. J.T. could also text message questions to his
parent and the nurse could then answer. This practice
helped to bridge some of the communication barriers the
team faced and did not force J.T. to communicate in a
manner with which he was not comfortable.
Some communication tips helpful for all developmental
and cognitive levels include minimization of sensory stimu-
lation in the environment to improve the child’s focus and
use of clear, simple directions to communicate instructions.
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Caring for the Child With an Autism Spectrum Disorder in the Acute Care Setting
For children with verbal skills, and even those with limited
verbal skills, speaking directly to the child enables him or her
to focus on your words. It is important to remember that
limited verbal skills do not necessarily mean limited ability
to understand. Be aware that children with ASD tend to be
concrete thinkers, and they interpret what is said to them
very literally.
Children with ASD tend to be visually oriented. This can
be especially helpful for those with limited to no verbal skills.
The use of pictures, sign language, word processing, texting,
and modeling are all methods that can be employed to com-
municate. And whether communication is verbal and/or
visually oriented, be prepared to tell or show the child mul-
tiple times. Consistent repetition reinforces concepts.
An important point to remember in working with chil-
dren with ASD is to use positive reinforcement that focuses
and builds on their strengths. If they constantly feel that they
need “fixing” or their efforts are met with criticism, they are
unlikely to cooperate and learn because these situations
become something to be avoided. Choosing your words care-
fully becomes extremely important.
Case example 4
A 15-year-old girl with profound autism, mutism, and
developmental delay was admitted to the hospital for
evaluation of change in mental status and increasingly
aggressive behaviors. She would frequently bang her
head into the wall or bed, and slap or grab her mother.
During one particular outburst, the nurse speaking with
the patient’s mother discovered that the patient had just
begun her menstrual cycle. The nurse suspected that some
of these behaviors were an expression of pain brought on
by menstrual cramps. After speaking with the resident
physician, the nurse began giving ibuprofen more regu-
larly over the course of the next 12 hr. The patient’s
aggression began to diminish, and while pain was not the
sole source of her agitation, the incidents of aggression
became less intense and frequent.
Pain management is a major issue for the entire pediatric
population; however, special consideration should be taken
with children with ASD because many of them have tactile
defensiveness. In preparation for blood draws or injections, a
lidocaine-based topical cream (e.g., LMAX4®, Ferndale Labo-
ratories, Ferndale, MI, USA) should be offered to the family.
This cream provides local anesthesia when applied to the
insertion site approximately 30 min prior, and researchers
have found that it works well to control potential tactile
triggers for this group (Souders et al., 2002).
Pain assessment strategies may need to be modified, espe-
cially when a child with ASD is nonverbal. If a child is unable
to communicate about the pain intensity, its location, or char-
acter, alternate pain assessment tools may be necessary based
250
on behaviors, parent input about usual pain cues, and
appraisal of the situation. In a study of 43 children during
venipuncture (21 with autism, 22 non-impaired), Nader,
Oberlander, Chambers, and Craig (2004) found that behav-
ioral responses to pain were similar between the two groups
of children with the exception that children with autism had
a more pronounced facial expression of pain evident during
the actual venipuncture than did the non-impaired children.
Observational pain assessment tools such as the revised
Faces, Legs, Activity, Cry, Consolability may be useful, espe-
cially because the tool incorporates caregiver-identified
child-specific pain behaviors (Malviya, Voepel-Lewis, Burke,
Merkel, & Tait, 2006).
While observation of pain behaviors may be necessary,
self-report of pain may be possible for many children with
ASD. Knowing the communication challenges that a child
with ASD might have, having a visual representation of the
pain assessment tool for the child to use is key. For example,
a visual analog scale with number anchors of 0–10 can be
used by the child by having the child place a mark on the
actual line rather than the more common approach of having
the child point to or say the number that best represents his
or her pain between 0 (no pain) and 10 (the worst pain). Once
initiated, consistent use of the same tool by all members of
the healthcare team is vital for every pain assessment.
Adapting Care Around Restricted Interests or
Stereotyped Behaviors
The DSM-IV-TR identifies restricted interests as “an
encompassing preoccupation with one or more stereotyped
and restricted patterns of interest that is abnormal either in
intensity or focus” (American Psychological Association,
2000, p. 75). This could manifest as an intense focus on a
cartoon character or items such as cell phones, books, or
toys. The intensity of this attachment may make it difficult
for a child with ASD to focus on other instructions or com-
plete other tasks without some connection to this item of
fixation.
Case example 5
G.H. was a 6-year-old male with a diagnosis of autism. He
was admitted to a pediatric medical unit for possible sinus
infection. He had complained of severe headaches for
over a week, and his parents reported erratic, uncharac-
teristic behavior as a result of his discomfort. In assessing
this boy, the admitting registered nurse discovered his
affinity for cartoon shows on television. G.H. had several
tests to undergo in diagnosing the cause for his head-
aches, which presented many challenges for him. The
healthcare team worked out a plan to reward G.H. for
completing these required tests/procedures with
protected/uninterrupted cartoon times. This partnership
JSPN Vol. 15, No. 3, July 2010
 helped to gain his cooperation and accomplish the neces-
sary workup.
Aggression toward self or others, property destruction, or
other acting-out behaviors are among the most challenging
behaviors for families and caregivers to manage. In fact, it is
often the presence of these behaviors that prompts referral
for psychiatric services or medical evaluation (Parikh, Kolev-
zon, & Hollander, 2008). There can be multiple “triggers”
that prompt an acting-out episode. Some triggers may be
environmental, such as excessive stimuli or negative staff
interactions; others may be internally driven, such as fear,
anxiety, pain, or separation from parents. One study of 109
children with autism found that 32% of their sample met
DSM-IV-TR criteria for specific phobia, the content of which
was predominantly fear of needles and crowds. Ten percent
of these children also had a phobia of loud noises, a phenom-
enon not often seen in typically developing children (Leyfer
et al., 2006). Children with ASD who have fixed interests or
ruminations, such as a child who is obsessed with cleaning
products but cannot clean while hospitalized, may not be
able to cope and, therefore, are more likely to act out. Leyfer
and others (2006) identified children in their sample with
obsessive-compulsive disorder, and nearly half of these chil-
dren had compulsions that involved instructing others in
performing ritualistic behaviors such as a specific greeting or
completion of routine tasks. A child with ASD who cannot
have these specific rituals completed and cannot control the
movement of doctors and nurses may also be more at risk for
an acting-out episode.
It can be difficult for children with an ASD to describe
their feelings and their needs, so nurses must be alert for
nonverbal signals such as changes in body language, with-
drawal, or agitation. These observations can help divert
blowups or tantrums that stem from frustration or sensory
overload (Notbohm, 2007). While hospitalized, provision of a
safe environment includes assessment of the patient’s room
for items of potential harm, consideration of the use of one-
to-one observation, and diminishing environmental stimuli.
Given the prevalence of children with ASD and comorbid
psychiatric conditions, it is not unusual to see children
admitted with orders for psychotropic medications. Continu-
ation of their home medications and consultation with hos-
pital psychiatric services for emergency management of
aggressive behaviors are important interventions to include
in the plan of care.
Case example 6
An 11-year-old boy with autism was admitted for severe
constipation and dehydration. He had a history of physi-
cally acting out when unexpectedly touched. His clinical
condition required a rectal exam, a procedure that was
sure to provide some distress to the patient. To minimize
JSPN Vol. 15, No. 3, July 2010
the patient’s distress and risk of aggression, the parent
and medical team met ahead of time to devise a plan for
the child. The team agreed to pre-medicate the child with
an anxiolytic, and the CLS worked closely with the parent
and child to prepare him for the procedure. The team also
decided that the rectal exam would be performed in the
treatment room to preserve the “safety” of the patient’s
room and that a senior resident would complete it as
opposed to a medical student or less experienced resident.
The procedure was done quickly and efficiently with the
child’s mother present. He completed the exam without
agitation or physically acting out.
Ineffective coping of children with ASD is often triggered
when they are not adequately prepared for new procedures
and tests. Any small or sudden change in the child’s envi-
ronment could result in a behavioral outburst. To ensure a
safer environment, remove unnecessary equipment, use
additional staff, and keep environmental stimuli to a
minimum. Staff can provide needed assistance for the child
with adequate time for preparation, involving child life and
parental support as much as possible (Souders et al., 2002).
Structuring Care Around Inflexibility and Need
for Routine
Children with ASD benefit from having a reliable daily
routine and pattern. In the acute care setting, it may be diffi-
cult to adhere to the child’s specific home routine, but there
are general activities that the multidisciplinary team should
strive to maintain (Nordahl et al., 2008; Souders et al., 2002).
For example, meal and bedtimes should occur at the same
time as they do for the child when they are at home. It may
also be helpful to create a visual schedule that the child can
observe and follow, and to bring in dishes, cups, soaps, etc.,
that are familiar and reassuring because the child uses them
every day at home.
Case example 7
R.J., a 15-year-old male with ASD, was diagnosed with
Crohn’s disease when he was 12. His GI disease had been
managed well at home until the past year, when he had
five admissions for flare-up of symptoms. The most recent
admission occurred during the night after a 2-day period
of emesis and abdominal pain. A new nurse admitted him
to the unit, unaware of his diagnosis of ASD, and was not
prepared for the level of agitation R.J. experienced during
the admission assessment. Fortunately, this patient’s father
always stayed with him during hospitalizations and was
able to help the patient during transitions. In reviewing
the difficult admission with the charge nurse, the newer
nurse realized that she needed more information about
how the diagnosis of ASD affected this particular patient’s
251
Caring for the Child With an Autism Spectrum Disorder in the Acute Care Setting
behaviors. After medicating the child for pain, she asked
the father to meet with her outside the room to get rec-
ommendations on how to plan his care. To meet R.J.’s
unique needs, she learned that this child was high func-
tioning and cognitively aware of his pain and the manage-
ment of it, but obsessed with wanting to control his pain
medications. With the father’s input, the nurse developed
a schedule of times for medication administration,
nursing procedures, meals, and any lab or procedural
studies being planned for the next 24 hr. She made sure
that R.J. had a copy at his bedside so that he could use the
schedule to track times for pain medication administra-
tion. R.J. also did better with a quiet room and one parent
at the bedside. He did not do well with a team of doctors
walking into his room and preferred to interact with one
person at a time. R.J.’s parents always prepared him ahead
of time for any change in routine activities. The nurse
developed a shift-by-shift plan for working with R.J. and
coordinated a primary care team with the charge nurse.
Again, it may be difficult to keep the child’s daily routine
the same while hospitalized, but letting the child control
daily activities as much as possible is important to maintain-
ing his or her cooperation and comfort with treatment.
Sleep is a critical element of overall health. For a child
with ASD, the hospital setting itself may exacerbate any pre-
existing sleep challenges. Bright lights, noise, a different
nighttime routine, unfamiliar bed and bedding, and unfamil-
iar faces can disturb a fragile sleep cycle. The impact of lack of
sleep or poor quality sleep can be far-reaching, leading to
daytime sleepiness, family or parental distress, and challeng-
ing behaviors during the day, such as hyperactivity, inatten-
tiveness, and aggression (Malow, 2004). Lack of sleep may
also exacerbate seizures by lowering the seizure threshold
(Malow, 2004). Asking the parents on admission if the child
has any special sleep routines, intervening as necessary, and
maintaining open communication with the family are impor-
tant ways to help minimize sleep disturbances in the in-
patient setting.
Case example 8
H.A. was a young teen with limited language and compre-
hension skills. The CLS on the unit helped with setting up
a schedule for his daily routine using a software program
called “Boardmaker” (DynaVox Mayer-Johnson, Pitts-
burgh, PA, USA) to make picture prompts. This visual
schedule was very effective in providing structure for his
day and with transitions to other activities. The staff could
point to the picture of a toothbrush and toothpaste while
they told him, “First you brush your teeth. Then, you will
have computer time” while they pointed to a picture of a
computer. H.A.’s cooperation improved significantly with
this approach because it was clear, concise, and predictable.
252
Examples of interventions such as those above illustrate
how addressing a child’s unique communication needs
while maintaining structure and consistency can help to
smooth the challenges of hospitalization.
Children with ASD are more comfortable in familiar
environments, and therefore, preparation for tests and
procedures ahead of time can greatly reduce the child’s
anxiety. In a study where researchers studied 25 children
with ASD undergoing an MRI without sedation, they
found that a pre-test visit to the environment was very
helpful (Nordahl et al., 2008). Though many children come
to the inpatient world when they are acutely ill without
time for a preadmission visit, children with ASD who have
scheduled preoperative admissions could visit the inpatient
floor as part of their preadmission testing. An orientation to
the unit with nurses as well as CLSs could be included in
this visit.
Case example 9
An 11-year-old boy with Asperger’s syndrome was hos-
pitalized for a cranial abscess that required surgical evacu-
ation. The surgical incision across his head was closed
with staples. When the child had healed enough for the
staples to be removed, the neurosurgery resident arrived
one morning and told him that he was going to remove
the staples at that time. The neurosurgeon began to try to
work on the staples while the patient thrashed around,
pulled away from the doctor, and yelled, “I did not
consent to this! I did not consent to this!” The CLS was
near his room at the time and quickly went in to see what
was happening. She was able to pull the neurosurgeon
aside and explain that this boy absolutely needed prior
preparation if he wanted to achieve the task of removing
the staples. The CLS spent time with the patient that day to
explain what needed to be done and how the staples
would be removed. He was very interested in details
about what he would feel. He wanted to know how the
tool would feel on his head and what it might feel like
when the staples came loose. The CLS kept it as simple as
possible using descriptors like cold, pressure, a tug,
pulling on your skin. After the initial explanation, the
patient went through times of anxiety about the proce-
dure. Nothing could distract him from thinking about it.
He would obsessively think about it, but could also rec-
ognize that he was doing so. He wanted to please others
and was anxious that he might not do “well enough.” The
next morning, the procedure was effectively carried out
with the CLS present to offer support, coaching, and
praise.
In preparing children for procedures, it is helpful to allow
the child age-appropriate opportunities to see, touch, and feel
any devices that may be used during a procedure. Some
JSPN Vol. 15, No. 3, July 2010
children may appreciate a step-by-step instruction during the
procedure. Ongoing positive reinforcement and the use of a
reward system may also prove to be helpful (Thorne, 2007).
How Do I Apply This Evidence to
Nursing Practice?
With the increasing likelihood of caring for children with
ASD, nurses in the primary and acute care settings need to
be prepared to provide safe, developmentally appropriate
care. The culmination of the literature reviewed and case
studies provided along with the suggested assessment tools
are a starting point in developing care plans for patients
with ASD. Other ideas include developing assessment tools
such as the one in Table 2 or development of a nursing stan-
dard that addresses care for patients with ASD. Providing
nurses specific, focused resources supports consistent care
and helps ensure a safe environment for both patients and
nurses. Whether part of the inpatient or outpatient setting,
planning and coordinating care with a multidisciplinary
team is essential in providing resources, treatment, and
follow-up. Initiating the development of a multidisciplinary
group that is responsible for keeping up to date with
advances in ASD research and disseminating that informa-
tion to the staff is also likely to be helpful. Ultimately, the
best plan of care will be one that is formulated with the
family and considers the unique experience of the spectrum
of the child’s symptoms.
Author contact: scarpinato@email.chop.edu, with a copy to
the Editor: roxie.foster@UCDenver.edu
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