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One Size Doesn't Fit All:
The Case of Patients with Autism in Emergency Room Settings

By Laura Kirsch, MHA

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Citation

Kirsch L. One size doesn’t fit all: the case of patients with autism in emergency room settings. HPHR. 2021;34.

One Size Doesn't Fit All: The Case of Patients with Autism in Emergency Room Settings

Abstract

A visit to the Emergency Room (ER) can be a challenging experience for any individual.  Now, imagine entering the ER as an individual with autism. In addition to the stress commonly  associated with ERs, individuals with autism face further challenges. These challenges are largely  due differential sensory processing in individuals with autism versus “typical” individuals  (Leekam et. al. 2007). Moreover, individuals with autism have unique needs in terms of their  reasons for visiting the ER (Kalb et. al. 2012).

 

As such, it is imperative that special ER’s be designed to suit the characteristics,  challenges, and needs of individuals with autism. Due to the variability of factors that come into  play for children and adults with autism, this paper will be limited to the discussion of pediatric  ER’s.

 

This aim of this paper is to present the case for the creation of specialized pediatric ER’s  for children (ages 0-18) with autism. This literature review will be broken down into the  following sections (1) reason and fiscal comparison, (2) sensory stimulation in children with  autism, (3) spatial and design features beneficial to children with autism, (4) current developments, (5) future, needed progress and research.

Financial and Reason for Visit Comparisons

Due to increased utilization, children with autism have higher total emergency room related costs as compared to children without autism. One possible explanation for this is that children with autism do not receive proper care when they initially visit the ER, thus  prompting future visits. It may also be the case that some children with autism require more ER  visits due to differential challenges and characteristics as compared to children without autism.

 

Among a sample of children, aged 2-18, continuously enrolled in the Kaiser Permanente  Medical Care Program the number of ER visits for children with autism versus children without  autism was, on average, 30% greater. This percentage jumped to 70% among the 15-18 year old  age group. These increases in ER visits are tied to a 30% increase in ER related costs for children  with autism (Croen et. al. 2006). However, the overall percentage of children who required ER  visits was stable among children with and without autism.

 

In a cross-sectional study, utilizing data from the 2008 National Emergency Department  Sample, it was found that children with autism are 11% more likely than children without autism  to require ER visits that are psychiatric related (Kalb et. al. 2012). This suggests that children  with autism require a different type of medical attention than children without autism.

 

The above research based evidence and related rationales support the need for the  creation of specialized, autism-friendly pediatric ER’s. The development of such ER’s would  serve to improve the quality of care for children, offering potential medical cost savings to the  population at large.

Sensory Stimulation Among Children with Autism

Heightened sensory abnormalities have been found to be more prevalent in children with  autism, as compared to children without autism. To this end, Leekman, et. al. utilized the  Diagnostic Interview for Social and Communication Disorders (DISCO) as a tool among  children ages 34-140 months to gauge differences in sensory abnormalities between children  with autism and typical children. Over 90% of children with autism presented with sensory  abnormalities, as compared to just 65% in the clinical control group. Moreover, of the children in  both groups presenting with sensory abnormalities, the ones in the autism group were drastically  more likely to present across multiple domains. Among children with autism, sensory symptoms remained constant with age and IQ in the domains of touch and smell, taste, and auditory.  However, sensory symptoms yielded significant differences with age and IQ among the visual  domain (Leekam et. al., 2007).

 

To lend itself to contribute to the establishment of pediatric, autism-friendly ER’s the  research on autism and sensory abnormalities must be understood in terms of how these  abnormalities are presented. In a retrospective review of clinical data caregivers of children with  and without autism, ages 3-6 (n=281), were asked to fill out Short Sensory Profiles (SSP’s). Most relevant to this literature review is the finding that children with autism were significantly  more under-responsive/sensory seeking than children without autism. This was exhibited in  children with autism by their tendency to tune out language, especially in the presence of  background noise (Tomcheck & Dunn, 2007). This finding may prove to be problematic in ER’s  where background noise is particularly manifest. In order to provide effective care patients must  be highly attentive to medical care providers. However, the findings of this study suggest that the  ER noise environment triggers a response in patients with autism that is counter-productive to  the provision of high quality care.

 

The differential effects of auditory stimuli on children and adolescents with autism  (n=11) as compared to those without autism (n=11) were also prevalent in a study based on the  results of psychoacoustic testing. These tests confirmed the researchers’ hypothesis that those  with autism have an enhanced perception of, and reduced tolerance for, loudness. In effect, this  means that sounds deemed moderate by individuals without autism are deemed to be loud by  children with autism. The authors related this finding to heightened annoyance levels, resulting  in irritation (Khalfa et. al. 2004).

 

The findings produced by Khalfa et al have vast implications for ER design for  individuals with autism. The typical, current ER environment tends to be considered loud by  typical individuals. It could thus be reasoned that the enhanced loudness effect and resulting  irritation felt by children with autism could have a drastic, negative impact on their ER  experience and the quality of care they receive. Purposed design and care adjustments for  pediatric ER’s may include alternative methods to decrease the volume of sound from machines  and overhead speakers, as well as the construction of rooms with sound proof walls such that  patients can quickly be placed away from the noise typical of waiting rooms.

 

According to a questionnaire assessing hyper and hypo sensitivities in children, ages 4- 14, with autism (n=30) as compared to a control group of normally developing peers (n=30),  children with autism differed from the control group across all domains, including auditory,  tactile, visual, gustatory, and vestibular (Talay-Ongan, A. & Wood K., 2000). Most pertinent to  this literature review are the authors’ discussion regarding the auditory and tactile domains.

 

Children with autism displayed both hyper- and hypo-acuity. Hyper-acuity presented as  children with autism hearing loud sounds prior to their typically developing peers. Hypo-acuity  was evidenced by children with autism through their lack of responsiveness to certain sounds,  namely the human voice (Talay-Ongan, A. & Wood K., 2000). This finding of hypo-acuity, also  termed as selective hearing, may better lend itself to solutions outside the realm of environmental  design. Such suggestions may include the training of health professionals on best practices in  treating children with autism. Without proper training medical care providers may mistake the  lack of responsiveness by children with autism as being mal-intended, thus producing undue  frustration and detracting from the quality of care provided.

 

In terms of tactile domain sensitivities, children with autism had adverse reactions, such  as crying, to seemingly harmless experiences, including getting wet, wearing certain clothing,  brushing teeth, and touching sticky materials. Children with autism displayed “tactile  defensiveness” and distress upon being touched by individuals unknown to them. This response,  however, tended to be at least partially mitigated when the child with autism initiated and  controlled the touch. Lastly, children with autism, more so than children in the control group,  displayed a dulled reaction to pain sensations (Talay-Ongan, A. & Wood K., 2000).

 

It is also worthy to note that the authors’ findings regarding the age effects among  children with autism countered their hypothesis. The study results revealed that sensitivities  among children with autism increased with age. The authors are not sure whether this finding  indicates an actual increase in sensitivity with age, or whether children with autism become more  able to express sensitivity as they age.

 

It is important to elaborate upon research findings that highlight auditory sensitivities  among individuals with autism. This understanding is bolstered by a literature review that  discusses assessment methods, interventions, and cases related to hyperacusis in individuals with  autism. Hyperacusis is defined as an increased sensitivity to certain frequencies and volumes of  sound. Individuals with autism experiencing hyperacusis tend to engage in compensatory  behaviors such as covering their ears, crying, having tantrums, fleeing the area, humming,  trembling, hyperventilating, and self-injury (Steigler & Davis, 2010). These behaviors may be  mistaken by hospital employees and health care providers as acting out or non-compliance by the  patient. As a result hospital employees and health care providers can become frustrated and/or  may not know how to properly react. This can cause individuals with special needs to receive  less than optimal medical care. One potential drawback of this literature review in the scope of this paper is that it includes research on individuals of all ages, such that it is not limited to the  pediatric patient population.

Spatial and Design Features Beneficial to Children with Autism

It is important to account for differential sensory processing in children with autism when  providing care to them in an ER setting. This can be in part achieved through environmental  adaptions. It is suggested that individuals with autism be afforded an ER environment free from  excess stimulation; this includes decreased lighting and noise levels. In terms of reducing noise  levels it is suggested that phones, pagers, and intercoms be shut off. Additionally, it is  recommended that the number of care providers and staff be as minimal as possible. (McGonigle et al 2014) This latter suggestion reduces the unwanted behavioral effects of  crowding and encounters with strangers, both of which can be difficult for children with autism.

 

Negin Irani and colleagues employed a two-part model to help guide best practices for  building spaces to suit the needs and propensities of children with autism. First a questionnaire  was distributed based on a qualitative study of 19 parents’ observations of their children with  ASD. Next an observational field study was conducted, using the same sample population, in  clinical and educational settings. Although the focus of this study was building therapeutic  centers its findings can still be useful in informing architectural and design features for autism friendly, pediatric ER’s. The findings from the study suggest that using light colors, avoiding  colors that heighten stimulation and decrease concentration, and using certain colors or a dark  room to enhance children’s concentration and decrease stress can positively impact the behavior  and stress levels of children with autism (Irani et al, 2014).

Current Developments

The existence of pediatric ER’s that provide specialized, autism-friendly environments  continues to be severely lacking. However, in fall 2014 Capital Health Medical Center— Hopewell located in the Hopewell Township in Pennington, New Jersey announced the launch of  its autism-friendly program in its Pediatric ER. The staff in the pediatric emergency department  in the Hopewell ER underwent training specific to caring for patients with autism. Additionally,  pediatric ER nurses are equipped with iPads that allow them to more effectively communicate  with patients and obtain the following information:

  • Reason(s) for visit
  • Pain and discomfort level
  • Communication preferences

(Capital Health 2014)

 

The Hopewell pediatric ER incorporates a variety of environmental features and  adaptions to make it more suitable for children with autism. To account for differences in visual  sensory processing the florescent lighting is dimmed and an overhead light is shined in the  corner. To provide for soothing touch-stimulation toys, blankets and objects of a variety of  textures, including soft, squishy, hard, noisy, and shiny will be on hand behind the nurses’  station; they will be distributed according to patient preferences. Additionally, it was found that  children with autism find having their arms being brushed to be a pleasant experience. This  prompted the creation of brush kits, which will be available for use and take-home by patients’  family members and caregivers. The autism-friendly additions to the Hopewell pediatric ER can  be largely attributed to the Scott Serbin of Emergency Medical Associates. Serbin has past  experience in working with hospitals to set up programs similar to Hopewell’s. Hopewell, however, is unique in their use of a parent focus group to guide its development and  improvement (Mulvaney, 2014).

Future, Needed Progress and Research

The initiative taken by Capital Health-Hopewell and other healthcare systems to provide  autism-friendly ER’s is mark of progress. However, autism readiness within ER settings is still  far from where it needs to be in order for quality care to be accessible to all patients with autism.  Autism-friendly ER’s are still few and far between. A nurse at Hopewell recalled a mother who  traveled over an hour to take her son with autism to an ER where he could receive specialized  care. (Mulvaney, 2014).

 

There is still much need and opportunity for further research on how to make ER’s more  autism friendly. One possible avenue of investigation relates to adapting hospital sound systems  to be more sensory friendly for patients with autism. This pertains to a range of factors, including  overhead sound systems and machine alerts and alarms

References

 

Kalb, L. G., Stuart, E. A., Freedman, B., Zablotsky, B., & Vasa, R. (2012). Psychiatric related emergency department visits among children with an autism spectrum disorder. Pediatric emergency care, 28(12), 1269-1276.

 

Croen, L. A., Najjar, D. V., Ray, G. T., Lotspeich, L., & Bernal, P. (2006). A comparison of health care utilization and costs of children with and without autism spectrum disorders in a large group-model health plan. Pediatrics, 118(4), e1203-e1211.

 

McGonigle, J. J., Venkat, A., Beresford, C., Campbell, T. P., & Gabriels, R. L. (2014). Management of agitation in individuals with autism spectrum disorders in the emergency department. Child and adolescent psychiatric clinics of North America, 23(1), 83-95.

 

Leekam, S. R., Nieto, C., Libby, S. J., Wing, L., & Gould, J. (2007). Describing the sensory abnormalities of children and adults with autism. Journal of Autism and Developmental Disorders, 37(5), 894-910. doi:http://dx.doi.org/10.1007/s10803-006-0218-7

 

Tomchek, S. D., & Dunn, W. (2007). Sensory processing in children with and without autism: a comparative study using the short sensory profile. American Journal of occupational therapy, 61(2), 190-200.

 

Khalfa, S., Bruneau, N., Rogé, B., Georgieff, N., Veuillet, E., Adrien, J. L., … & Collet, L. (2004). Increased perception of loudness in autism. Hearing research, 198(1), 87-92.

 

Talay-Ongan, A., & Wood, K. (2000). Unusual sensory sensitivities in autism: A possible crossroads. International Journal of Disability, Development and Education, 47(2), 201- 212.

 

Stiegler, L. N., & Davis, R. (2010). Understanding sound sensitivity in individuals with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 25(2), 67-75.

 

Irani N., Soltanzadeh, H. (2014) A study on architectural spaces from psychological perspective emphasizing the autism rehabilitation clinic. International Journal of Scientific & Engineering Research, 5(1)

 

Mulvaney, N. (2014, October 14). Capital Health-Hopewell opens 1st ‘autism-friendly’ pediatric emergency department in N.J. NJ. Retrieved 2015, from http://www.nj.com/mercer/index.ssf/2014/10/capital_health_-_hopewell_to_launch_first_autism-friendly_pediatric_emergency_department_in_nj.html 11. Capital Health Launches New Jersey’s First “Autism-Friendly” Pediatric Emergency  Room. (2014). Retrieved November 28, 2015, from http://www.capitalhealth.org/news/2014 News Articles/Autism Friendly EROpening

About the Author

Laura Kirsch, MHA

Laura Kirsch holds a Master of Health Administration from the Cornell University, Sloan Program in Health Administration. She is an associate consultant at ZS Associates, operating at the intersection of technology, operations, and strategy. She has a wealth of expertise in project implementations, cross-functional collaboration, change management, communications, and project scoping.