Children with autism spectrum disorder (ASD) and similar conditions have unique needs that can present challenges for them when visiting an emergency department (ED). A lack of awareness, limited communication with the patient and family regarding their individual needs, a decreased understanding of these unique needs by medical professionals, and an overstimulating or unpredictable environment can lead to negative patient experiences and unwanted outcomes.1,2
ASD is characterized by impairments in social interaction and communication, sensory sensitivity, and repetitive behaviors. Children with ASD commonly also suffer from anxiety, aggression, and attention issues.3 Children with ASD vary greatly in cognitive abilities from low functioning to highly intelligent. They also have difficulty processing environmental stimuli such as sound, touch, and movement. Combined with their need for predictability and routine, a visit to the ED is likely to be difficult for children with ASD.1 Children with ASD and their caregivers attempt to maintain a consistent routine, avoid sensory overload, and learn how to cope with new environments. This may mean slowly introducing a new environment, rehearsing behaviors appropriate for the environment, and using sensory friendly tools to counteract harsh stimuli. Given the nature of the typical ED, accomplishing these tasks requires using a unique approach.
The rate in which EDs are seeing patients with ASD has increased in the last decade, and health care professionals are learning how to best care for children with ASD. The Centers for Disease Control and Prevention4 estimate that 1 in 68 children were diagnosed with ASD in 2014, compared to 1 in 150 in 2000. According to a survey of caregivers with adolescents and adults with ASD, 13% reported using at least one emergency service in a 2-month period.5 Children with ASD have common medical complaints that result in ED visits, such as seizures, behavioral conditions, gastrointestinal complaints, and dental emergencies.6–8
Unfortunately, current standards of care in pediatric EDs are not adequately meeting the needs of children with ASD. When asked about ED visits, families of patients with ASD report having negative or dissatisfying experiences and unfavorable outcomes.9,10 These experiences likely are a result of environmental stimuli (eg, bright lights, loud sounds, crowds of people), knowledge deficit of staff, not giving children warning before providing a physical examination, lack of individualized care plans, and the wait times often associated with emergency medicine. These factors can result in the escalation of emotions, anxiety, self-harm, or aggression in children with ASD. Once escalated, it is difficult for children with ASD to return to baseline, and sometimes this is associated with the use of physical restraints or sedative medications in the ED.1,5 However, by using the concepts of awareness, communication, environment, and education; children with ASD can have a more positive ED visit. Table 1 summarizes strategies for providing autism-friendly care to children in the ED or any medical setting.
Strategies for Providing Autism-Friendly Care
It is not possible to provide individualized or autism-friendly care to children if the medical staff is not aware that a patient has ASD. It is important to screen for ASD and similar conditions during the check-in process, as some families may not consider ASD as a medical condition when asked about medical history. Staff should not assume children have or do not have an ASD diagnosis based on appearance or behaviors due to the high variability in symptoms. Staff should then allow the family to decide if the child would benefit from any special accommodations and which would be most beneficial. From this point, it is important to communicate this diagnosis to other staff members to be able to provide individualized care.
Communication with the family, communication with the patient in a developmentally appropriate way, and communication to other staff members is key to individualizing care. Initially, communicating about wait times and working to expedite care can help the family prepare the child for their experience. Excessive wait times will increase the child's anxiety and agitation, and decrease the patient's ability to cope. Consider providing an alternative waiting space with low stimulation. Allow the family flexibility during wait times such as letting the patient take a walk or, if appropriate based on their condition, to play in a designated play space.
Identify how the patient communicates. This may range from being nonverbal, to using hand signs or pictures, to using age-appropriate communication. Ask about patient likes and dislikes. Staff can use this information to determine which distraction objects are most fitting for that patient. Understanding the child's triggers will allow staff to avoid these and prevent escalation of undue anxiety and agitation. It is important to discuss how the patient has coped with previous medical experiences. Along with this, staff members can assess any previous reactions the patient may have had to medications or procedures. Avoid dismissing information the family provides regarding their child, as they should be considered the expert in their child's care. After communication with the family and patient, communicate with other staff members (including all disciplines) regarding patient likes, dislikes, previous experiences, or any other information valuable to individualizing the child's care.
When communicating with the patient, it is important to approach the patient calmly and smoothly, avoiding fast and abrupt speech and movements. Staff should avoid multistep questions, allow time for the patient to answer in the way that is best for them, and speak directly to the patient even if nonverbal as they typically are able understand more language than they are able to express.2 The staff member should allow the patient time to adapt to the environment before attempting to begin any assessment or examination.
Staff should alter the environment to create a sensory-friendly environment based on the patient's known sensitivities. Consideration should be given to eliminate as many harsh stimuli as possible, such as diming bright lights, lowering the volume of monitor alarms, and limiting the traffic in and out of the examination room.2 Staff members should be aware of signs of overstimulation that may lead to agitation or aggression. Some of these signs include increased volume of voice, hyperventilation, tachycardia, hiding, or running. Ongoing assessment and a working partnership with family members is imperative to keeping the patient at baseline throughout the visit.
It is important to reinforce cooperative behavior during the visit. Using strategies such as “if/then” or “first/then” statements can help with this. Examples include “If I look in your ears, then you can take a walk” or “First, I am going to listen to your heart, then you can watch the movie.” Using a timer or counting can increase patient cooperation as it gives information about when something is going to begin and end. Use the family as a resource to help guide staff through examinations and procedures. Provide rewards for desired behaviors such as toys, stickers, fidget objects, television/movie time, or even a walk around the unit. Avoid bringing attention to unusual body movements, sounds, or behaviors of the child.
If available, consult a child life specialist as early in the course of the child's visit as possible. A child life specialist can provide developmentally appropriate preparation, create a coping plan, and provide procedural support to the patient and family. If a child life specialist is not available to provide support, the staff should still engage the patient in preparation prior to any procedure. Using developmentally appropriate, child-friendly language to describe the step-by-step process of each procedure can aid in the patient's ability to cope with the procedure.11 In addition to verbal preparation, patient's benefit from being able to see, touch, and feel any equipment that is going to be used during an examination or procedure. During this time, staff can rehearse coping strategies, such as deep breathing or counting, that will be used during the procedure.
For staff to be able to provide individualized, autism-friendly care to patients, they need to understand and appreciate the core symptoms of ASD and why the ED may be difficult for children with ASD. The current academic curriculum does not sufficiently educate medical professionals on ASD or how to adapt care to best meet the needs of patients with ASD. When surveyed, a group of medical professions reported low levels of comfort in caring for patients with ASD.12 These same medical professionals underwent training that covered information about ASD, dispelled myths regarding ASD, and recommendations for clinical practice. After the training, survey responses showed a significant increase in knowledge of and comfort in caring for patients with ASD.12 Although specialized training requires additional time and money, the benefits and increase of positive patient outcomes are greater.
- McGonigle JJ, Venkat A, Beresford C, Campbell TP, Gabriels RL. Management of agitation in individuals with autism spectrum disorders in the emergency department. Child Adolesc Psychiatr Clin N Am. 2014;23(1):83–95. https://doi.org/10.1016/j.chc.2013.08.003 PMID: doi:10.1016/j.chc.2013.08.003 [CrossRef]
- Scarpinato N, Bradley J, Kurbjun K, Bateman X, Holtzer B, Ely B. Caring for the child with an autism spectrum disorder in the acute care setting. J Spec Pediatr Nurs.2010;15(3):244–254. https://doi.org/10.1111/j.1744-6155.2010.00244.x PMID: doi:10.1111/j.1744-6155.2010.00244.x [CrossRef]
- American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders [text revision]. 4th ed. Washington, DC: American Psychiatric Publishing; 2000.
- Centers for Disease Control Prevention. CDC estimates 1 in 68 children has been identified with autism spectrum disorder. https://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.html. Accessed July 25, 2019.
- Lunsky Y, Paquette-Smith M, Weiss JA, Lee J. Predictors of emergency service use in adolescents and adults with autism spectrum disorder living with family. Emerg Med J.2015;32(10):787–792. https://doi.org/10.1136/emermed-2014-204015 PMID: doi:10.1136/emermed-2014-204015 [CrossRef]
- Kielinen M, Rantala H, Timonen E, Linna SL, Moilanen I. Associated medical disorders and disabilities in children with autistic disorder: a population-based study. Autism. 2004;8(1):49–60. https://doi.org/10.1177/1362361304040638 PMID: doi:10.1177/1362361304040638 [CrossRef]
- Horvath K, Perman JA. Autistic disorder and gastrointestinal disease. Curr Opin Pediatr.2002;14(5):583–587. https://doi.org/10.1097/00008480-200210000-00004 PMID: doi:10.1097/00008480-200210000-00004 [CrossRef]
- McDermott S, Zhou L, Mann J. Injury treatment among children with autism or pervasive developmental disorder. J Autism Dev Disord.2008;38(4):626–633. https://doi.org/10.1007/s10803-007-0426-9 PMID: doi:10.1007/s10803-007-0426-9 [CrossRef]
- Pennsylvania autism needs assessment: a survey of individuals and families living with autism: unwanted outcomes: police contact & urgent hospital care. Bureau of Autism Services, Pennsylvania Department of Public Welfare. 2011. http://www.paautism.org/Portals/0/Docs/Needs%20Assessment/BriefOverview.PDF?ver=2017-03-27-154613-360. Accessed on July 31, 2019.
- Kogan MD, Strickland BB, Blumberg SJ, Singh GK, Perrin JM, van Dyck PC. A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005–2006. Pediatrics. 2008;122(6):e1149–e1158. https://doi.org/10.1542/peds.2008-1057 PMID: doi:10.1542/peds.2008-1057 [CrossRef]
- Thorne A. Are you ready to give care to a child with autism?Nursing. 2007;37(5):59–61. https://doi.org/10.1097/01.NURSE.0000268787.50741.fd PMID: doi:10.1097/01.NURSE.0000268787.50741.fd [CrossRef]
- McGonigle JJ, Migyanka JM, Glor-Scheib SJ, et al. Development and evaluation of educational materials for pre-hospital and emergency department personnel on the care of patients with autism spectrum disorder. J Autism Dev Disord. 2014;44(5):1252–1259. https://doi.org/10.1007/s10803-013-1962-0 PMID: doi:10.1007/s10803-013-1962-0 [CrossRef]
Strategies for Providing Autism-Friendly Care
||Identify patients with ASD during check-in process; communicate this to the medical staff
||During check-in process, ask if patient had ASD diagnosis or similar condition
If patient will benefit from accommodations
||Provide family with information regarding available accommodations
||Allow family to decide if patient will benefit from accommodations
||Avoid assuming patients have/do not have ASD diagnosis based on appearance or behaviors
|Communication with family
||Identify any barriers to communication
Identify preferred communication
||Ask about reactions to previous medical/ED experiences
Ask about patient's likes/dislikes, and soothers/triggers
||Provide interpretative services if necessary
||Allow family time and opportunity to provide relevant information
||Avoid being dismissive of information family shares, as they are the expert when it comes to the patient
|Communication with child
||Identify primary form of communication
||Ask concrete, one-step questions
||Provide an approach that is calm
||Allow patient personal space and time to warm up to you before beginning examination
||Avoid using a loud, abrupt voice
Avoid using multistep directions
||Identify signs of overstimulation such as pacing, rocking and yelling
||Ask about sensory sensitivities
||Provide private patient room
Make modifications to environment based on patients sensory sensitivities and soothers/triggers
||Allow patient time to adjust to environment before beginning vitals/examination
||Avoid using harsh stimuli (loud television volume, monitor alarms, bring suitable lights)
||Identify opportunities for education (skills fair, new-hire orientation, lunch and learn)
||Ask about previous experience working with patients with ASD
||Provide information about:
Core symptoms of ASD and similar conditions
Communication with patient and family
Environmental modifications Preparation
Procedural support strategies
||Allow staff to individualize care plans and advocate for patient needs
||Avoid assuming staff are comfortable working with this population
||Identify alternative waiting spaces within the department
||Ask patient and family if they would like to wait in alternative space
||Provide a quiet, child friendly, low-stimulus waiting space
Provide patient and family with information regarding expected wait times
||Allow patient and family to be flexible during wait times, as patients may want to walk the halls and/or be out of the examination room during long waits
||Avoid long wait times, attempt to expedite care
||Identify techniques patient uses outside of the hospital (if/then, counting, visual schedules)
||Ask if any reward items would be of interest to patient
||Prepare prior to procedures, rehearse desired behavior during preparation
Provide rewards to positively reinforce cooperative behavior
||Allow family to guide you in best way to get patient to cooperate with examination or procedure
||Avoid bringing attention to unusual behaviors, words, or body movements
||When available, consult a child life specialist to engage in developmentally appropriate preparation, provide distraction and coping during procedures, and aid in creating a sensory-friendly environment
When indicated, consult with social work to connect family with resources and organizations available in the community