Patients with autism in the emergency department: cause of admissions and challenges

Abstract

Objective: This study aims to understand the presentations of autism spectrum disorder (ASD) patients in a tertiary hospital’s emergency department (ED) in Turkey, and the difficulties of families face in the ED.

Method: Clinical characteristics of ASD patients who presented to the ED between 1 January 2015 and 15 November 2020 were obtained by retrospective file review. The caregivers of the patients who had presented to the ED in 2020 were interviewed by a phone call.

Results: There were 740 applications of 224 patients (192 boys, 32 girls). Almost half of the patients were between 0 and 5 years old. Respiratory problems were the most common cause of admissions in all age groups. The second common reasons for ED visits were gastrointestinal problems in 0–5 years old, traumatic injuries/poisoning in 6–12 years old, and epilepsy/syncope in 13–17 years old. Psychiatric problems were less common (2.7%) than other reasons for admission. The most challenging issue for children was “the crowded waiting area, and the long waiting period” and followed by “physical restraint imposed on the child,” “noise,” and “bright light.”

Conclusion: As the clinicians’ awareness and use of more accurate diagnostic tools have increased, the ASD prevalence has gradually increased. To increase the quality of healthcare services for these patients, awareness studies and new interventions are needed.

Introduction

Autism spectrum disorder (ASD) is a neurodevelopmental disorder with significant difficulty in the social communication and social interaction and limited, repetitive behaviors and interests (American Psychiatric Association 2013). According to the Centers for Disease Control and Prevention’s latest data, ASD impacts 1 in 54 individuals (Maenner et al. 2020). Besides, 80% of children with ASD have at least one psychiatric comorbidity, and 0%–16% of children have an additional medical condition (De Bruin et al. 2007, Fombonne et al. 1997). Due to accompanying medical or psychiatric disorders, ASD patients present to emergency departments (EDs) at higher rates than their neurotypical peers (Vohra et al. 2016, Rava et al. 2017, Deavenport-Saman et al. 2016). However, these researches reflect data from developed countries. There is no data for ED visits of ASD patients in Turkey. Studies in which the children brought to EDs for psychiatric emergencies evalated in Turkey often consist of neurotypical children (Mutlu et al. 2015, Bilginer et al. 2021).

Children with ASD mainly present to ED due to gastrointestinal, neurological, and behavioral problems (Kalb et al. 2012). Besides they are nine times more often brought to EDs due to psychiatric conditions than their neurotypical peers (Kalb et al. 2012).The new and unfamiliar appearance of hospital conditions for children with ASD increases these children’s anxiety levels, and it can create difficulties for children, families, and healthcare professionals (Carpenter et al. 2014, American Academy of Pediatrics 2009). Families report that emergency room experiences exacerbate physical and mental health problems in some children. EDs are crowded and noisy environments where the patients can be exposed to many different sensory stimuli. Clinical features of patients with ASD, such as mental limitations to understand the necessity of medical procedures, communication difficulties, sensory sensitivity, difficulties in adapting to new environments, increase their anxiety in the emergency room and prevent healthcare professionals from providing adequate care (Muskat et al. 2015). There are still difficulties associated with emergency room admissions management for children with special needs. Studies on how to provide the best health service to children diagnosed with ASD and their families are limited (Cohen-Silver et al. 2014).

It is crucial to understand how the ASD prevalence affects these patients’ use of health services and how it creates a burden on the healthcare system (Zhang et al. 2017). According to Turkey’s only study that addressed the difficulties when children with ASD had in the hospital, “environmental difficulties” were the most frequently mentioned difficulties by families (Zengin-Akkuş et al. 2021). However, it is not detailed what this thematic definition covers in the study. In Turkey, there is no comprehensive study examining emergency service admissions of children and adolescents with autism. The limited number of studies that analyze pediatric psychiatric emergency patients show that pediatric mental health professionals rarely examine ASD patients in ED (Mutlu et al. 2015, Bilginer et al. 2021). This study aims to understand the emergency presentation of children with ASD who present to a university hospital’s ED, and the difficulties of families face in ED.

Materials and methods

Participants and procedure

This study had two stages. The first stage was a retrospective file evaluation, and the second was a phone call with the caregivers of children with ASD who had presented to the ED in the last year.

In the first stage, firstly, the file numbers of the patients with ICD codes of Childhood Autism (F84.0), Asperger Syndrome (F84.0), Rett Syndrome (F84.0), Pervasive Developmental Disorder (F84.0), who presented to the ED between 01.01.2015 and 12.11.2020 were provided with the permission of the hospital management. Then the patients’ examination records were retrospectively analyzed. Data such as the reasons of the patients’ applications to the ED, repeated applications within the same month, the distribution of applications within/out of working hours, the patients’ previous medical/psychiatric diseases, and their level of speech were collected from the files.

In the second stage, the authors called 55 caregivers of ASD patients who presented to ED in the last year and interviewed one of the parents (n = 23) who gave consent to participate in the study. This interview started with brief information about the study and continued with eight yes/no questions regarding the most common difficulties experienced by children with ASD in ED and one open-ended question allow families to report themselves to the researchers. The researchers covered the phone calls.

Statistical analysis

Data obtained through the retrospective file analysis were recorded in the SPSS 23.0 package program, and descriptive statistics were applied. Counting variables such as the patients’ clinical or socio-demographic characteristics and common reasons for ED visits were shown as percentages (%). Categorical variables compared with Chi-Square test. The level of significance was taken as p < 0.05.

Ethical approval

Primarily the permission of hospital administration was obtained for retrospective file scan. In the study’s phone call stage, the caregivers were informed verbally about the study, and the interview continued with the caregivers who gave verbal consents to participate in the study. The Ethics Committee of the KTU Faculty of Medicine approved the study with the protocol number 2020/382.

Results

Findings about the characteristics of the participants

There were 740 hospital admissions of 224 patients between determined dates. 85.7% of the patients were male (n = 192) and 14.3% (n = 32) were female. The distribution of the admissions by year is in Figure 1. Concerning the age group, 55.5% of patients were between 0 and 5 years old, 36.2% were 6 and 12 years, 7.0% were 13 and 17 years, and 1.2% were over 17 years old. The patients who had at least one child psychiatry admission were 83.0% (n = 186) of the participants. Of whom the 58.9% (n = 109) resided in the town centers, and 41.3% (n = 77) resided in the districts or villages. While 40.3% of the patients’ mothers (n = 75) had a high school education or above, 59.6% (n = 111) had a lower education level than the high school. Table 1 displays the clinical characteristics of the patients.

Figure 1.

Distribution of admissions by years.

Table 1.

Clinical characteristics of the patients.

Clinical characteristics	n (%)
Level of speech
No speech	59 (29.9)
Single words	74 (37.5)
Sentences	64 (32.4)
Additional psychiatric disordera
None	77 (39.1)
Intellectual disability	173 (87.8)
ADHD	90 (45.6)
Conduct disorder	58 (29.4)
Anxiety disorder, OCD	17 (8.6)
Tic disorder	2 (1.0)
Depression	1 (0.05)
Bipolar disorder	1 (0.05)
Epilepsy
Present	77 (34.4)
Absent	147 (65.6)
Additional medical illness (including epilepsy)b
Present	115 (51.3)
Absent	109 (48.7)

ADHD = attention deficit hyperactivity disorder; OCD = obsessive–compulsive disorder.

^a One patient may have more than one psychiatric diagnosis.

^b Asthma, congenital anomalies, muscle diseases, hypothyroidism or allergic conditions.

Findings about the admissions and related factors

Between the study dates, the average number of admissions to the ED was three. Besides, 21.9% of the patients (n = 49) had more than three ED admissions. 30.8% (n = 228) of all admissions were during working hours (between 08.00 and 17.00 on weekdays), and 69.2% (n = 512) were out of working hours. 16.2% (n = 120) of the admissions were repeated admissions within the same month. Respiratory symptoms were the most common cause of ED visits in all age groups. Among the children presenting with respiratory problems in 2020, none of them had a positive COVID-19 test or none of the symptoms were associated with COVID-19 infection. The second most common reasons for ED visits were gastrointestinal problems in children aged 0–5, traumatic injuries/poisoning in children aged 6–12, epilepsy/syncope in children aged 13–17 (Table 2). There was no significant difference between admission due to traumatıc injuries/poisoning and the presence of Attention deficit hyperactivity disorder (ADHD), gender, or maternal education level. However, admissions due to traumatic injuries/poisoning were significantly higher during non-working hours (p = 0.015; χ² = 5.922), and admissions due to examination and medical dressing were significantly higher during working hours (p = 0.003; χ² = 8.608). Patients with recurrent admissions in the same month most frequently presented with respiratory system problems (n = 48; 40.0%), epilepsy/syncope (n = 16; 13.3%), and traumatic injuries/poisoning (n = 12; 10.0%). There was no significant difference between the recurrent admissions and the presence of comorbid medical illnesses, epilepsy, living in rural/urban areas, or level of speech. On the other hand, patients with comorbid medical conditions had a significantly higher rate of more than three ED visits (Table 3).

Table 2.

Reasons of ED visits by age groups.

	Age groups				Total (n = 740) n (%)
	0–5 years (n = 411) n (%)	6–12 years (n = 268) n (%)	13–17 years (n = 52) n (%)	>17 years (n = 9) n (%)
Respiratory symptoms	177 (43.1 %)	76 (28.4 %)	15(28.8 %)	1 (11.1 %)	269(36.4 %)
Traumatic injury or poisoning	39 (9.5 %)	45 (16.8 %)	7 (13.5 %)	0 (0.0 %)	91(12.3 %)
Epilepsy/syncope	39 (9.5 %)	32 (11.9 %)	14(26.9 %)	5 (55.6 %)	90 (12.2 %)
Gastrointestinal symptoms	49 (11.9 %)	24 (9.0 %)	2 (3.8 %)	–	75(10.1 %)
Examination and medical dressing procedures	23 (5.6 %)	30 (11.2 %)	3(5.8 %)	–	56 (7.6 %)
Somatic complaints	19(4.6 %)	23(8.6 %)	4(7.7 %)	–	46 (6.2 %)
Mouth, tooth, eye and ear infections	16(3.9 %)	13(4.9 %)	1(1.9 %)	–	30(4.0 %)
Fever	25(6.1 %)	4(1.5 %)	–	–	29 (3.9 %)
Psychiatric problemsa	5 (1.2 %)	11(4.1 %)	4(7.7 %)	–	20 (2.7 %)
Otherb	19(3.6 %)	10(3.4 %)	2(3.8 %)	3(33.3 %)	34 (4.5 %)

ED = emergency department.

^a Aggression, agitation, anxiety.

^b Urinary system problems, diabetic complications, allergic reaction.

Table 3.

Comparison of the reasons according to the frequency of ED admission.

	>3 ED visits n (%)	≤3 ED visits n (%)	p	χ2
Medical condition	32 (65.3)	83 (47.4)	0.027*	4.897
Epilepsy	19 (38.8)	58 (33.1)	0.463	0.538
Living in rural area	13 (35.1)	64 (43.0)	0.388	0.747
Traumatic injuries or poisoning	4 (8.2)	33 (18.9)	0.075	3.175
Maternal education (high school education and above )	19 (51.4)	56 (37.6)	0.127	2.335

ED = emergency department.

^*p < 0.05.

Findings about the phone call

Finally, according to the information obtained from the caregivers of 23 patients who accepted the phone call, the most challenging issue for children in the ED was “the crowded waiting area and the long waiting period.” It was followed by “physical restraint imposed on the child,” “noise,” and “bright light” (Table 4).

Table 4.

Results of the phone call (n = 23).

The most difficult/disturbing factor during the stay in ED	n (%)a
1. Noise	6 (26.1)
2. Bright light	2 (8.7)
3. Cool room temperature	—
4. Higher room temperature	—
5. Intense smell	—
6. The crowded waiting area and the long waiting period	13 (56.5)
7. Dormitory type hospitalization	—
8. Physical restraint during medical procedures	8 (34.8)
9. Other
Over reaction to white coat and injector	4 (17.4)
Unsafe beds	1 (4.3)

ED = emergency department.

^a Distribution among 23 parents who gave consent to the phone call.

Discussion

This is the first study which reflects the clinical manifestations of ED visits of children and adolescents with ASD in Turkey. According to the study, the most common ASD patients who visited the ED were between the ages of 0–5. Approximately 2/3 of the patients had no speaking skills, or their speech was at the level of a single word. Respiratory problems were the most common cause of admissions in all age groups, but psychiatric problems were less common than other reasons for admission.

Traumatic injuries/poisoning were important reasons for admissions, especially for school-age children. Families often experienced difficulties in the ED due to the crowded waiting area, noise, and physical restraint imposed on their children during medical procedures.

Studies show that children with ASD in EDs are primarily males with an average age of 12 years (Cohen-Silver et al. 2014, Zhang et al. 2017). In our study, the male patients were also six times more than the girls. This result was not surprising as it is well known that ASD is more common in the male gender (American Psychiatric Association 2013). On the other hand, there were no ASD patient admissions under six years old in the Cohen-Silver and colleagues study (Cohen-Silver et al. 2014), but more than half of the children in our study were under six. According to recent research conducted in Turkey, children under six years old brought to the pediatric ED constitute 60% of all admissions, and approximately 20% of all admissions were between the ages of 6–11. However, there were no data on children diagnosed with ASD in this study (Karakaş et al. 2020). Deavenport-Saman et al. (2016) showed that children aged 0–6 years with ASD present less to the ED than their neurotypical children. The same study showed that children with ASD between the ages of 6–11 and between the ages of 12–17 presented to the ED more frequently than neurotypical children. In our study, data on neurotypical children were not evaluated. However, the distribution of the admissions by age group was similar to the definition of Karakaş et al. (2020). Besides, as a reflection of the COVID-19 pandemic in 2020, it was observed that the frequency of admissionsdecreased dramatically. This result also raised the question of whether there is an unnecessary increased use of ED in general.

In this study, patients were admitted to the emergency room an average of three times. Besides, 16% of the patients had recurrent admissions within the same month between the study dates. This rate was considerably lower than the regular admission rate (25%) and repeated admission in the first fifteen days after the first admission (50%) determined in the research of Cohen-Silver et al. (2014). On the other hand, in our study, the rate of mothers who have a high school or above education level (40%) and brought their children to the ED more than three times was higher than the mothers who have lower education level. However, unlike McElligott and Summer (2013), who showed that the lower education level of mothers of children with ASD increasing the ED admissions rate, there was no relationship between the rate of ED visits more than three times and maternal education level. New studies with large samples are needed to support these data and show whether there is a cultural differences.

Children diagnosed with ASD may have multiple comorbidities that require medical care, such as respiratory system diseases or mental health disorders (Liptak et al. 2006, Kohane et al. 2012). The presence of more than one medical condition in children with ASD was interpreted as a reason for their families to prefer to go to the ED instead of a primary health care center (Cohen-Silver et al. 2014). Indeed the children with ASD present to the ED more frequently with other medical conditions (Zhang et al. 2017). In our study, half of the patients had at least one medical condition. Besides, having a comorbid medical condition was significantly associated with more than three admissions to the ED. Previous studies showed that children with ASD frequently present to the ED due to epilepsy, seizures, neurological symptoms, gastrointestinal problems such as nausea, vomiting, diarrhea, abdominal pain, and constipation (Vohra et al. 2016, Deavenport-Saman et al. 2016, Cohen-Silver et al. 2014). Problems such as respiratory tract infections, viral infections, otitis media were among other less frequently defined causes of emergency admission (Deavenport-Saman et al. 2016). In our study, the most common reason for admitting to the ED was respiratory problems in all age groups. None were due to COVID-19 infection. Many studies underline the mediating role of immune dysfunction and inflammation in the etiology of ASD (Gesundheit et al. 2013, Mead and Ashwood 2015). Moreover, the similar increasing trend in the prevalence of immune-mediated respiratory diseases and autism calls into question the common etiologic factors (Kotey et al. 2014). On the other hand, it has been reported that neurotoxic effects caused by air pollution, which is emphasized as an important environmental factor in the etiology of respiratory diseases, may contribute to the etiology of ASD (Costa et al. 2020). The association of ASD and respiratory disease, whose etiological similarities were overstressed, could explain emergency service admissions. In this study, psychiatric reasons constituted only 2.7% of all admissions. It is emphasized that psychiatric reasons are among the leading causes of emergency admission for children with ASD (Vohra et al. 2016). Although 60% of the patients in our study had at least one comorbid psychiatric disorder, ED admission was mainly for other reasons. Trauma or poisoning, epilepsy/syncope, and gastrointestinal problems followed the respiratory problems, respectively. The distibution of reasons were similar with a recent study examined the all admissions to a pediatric ED in Turkey (Pakdemirli et al. 2020). However, the age range of children who brought with traumatic injuries/poisoning in our study differed from this study. Pakdemirli et al. (2020) showed that children aged six or under were frequently brought to ED due to trauma, and the distribution between genders was similar. Our study showed that especially school-aged children with ASD were brought in due to traumatic injuries/poisoning regardless of gender.

In this study, in addition to the characteristics of ED applications of children with ASD, information about the difficulties families faced in ED was also obtained. Previous studies shows that long waiting times in EDs, the inappropriate communication style of healthcare professionals, physical examination performed here, all invasive interventions including forcible bodily touching and physically uncomfortable conditions created difficulties for both ASD and neurotypical children in ED (Cohen-Silver et al. 2014, McGonigle et al. 2014, Giarelli et al. 2014). Besides, sensory overload such as noise, mobility, bright lights, and crowds are the other difficulties experienced by children with ASD in the emergency room (Vaz 2010). All these difficulties may create severe problems for children diagnosed with ASD. Besides, the children’s language processing and cognitive deficits limit their ability to understand the requirements of emergency room interventions (such as injection, vascular access) (Kalb et al. 2012). In our study, one in three children could speak at the level of sentences, and nearly 90% of children had intellectual disability comorbidity. The most frequently mentioned problems by families were similar to previous studies. More than half of the families participating in our study complained about the crowd and the long waiting time. Also, noise, physical restraint, and bright light were other difficulties that families complained about EDs. In addition, physical restraint imposed on children was a problem frequently mentioned by families and one mother complained of unsafe beds in the emergency room. Children diagnosed with ASD may react unpredictably or even violently to stimuli during a routine medical intervention concerning these disabilities and other clinical features. Therefore children diagnosed with ASD can often be physically restrained or sedated during routine medical interventions and procedures (Brown et al. 2019). At this point, ensuring patient safety is also very important. In the light of these results, taking the child into a quieter and darker area during the clinical evaluations and ensuring the physical safety of the patient in procedures can help and improve the experiences of children with ASD and their families during ED visits. Besides, determining the order of priority for what to do, shortening the duration of the patient’s stay in the emergency by making only critical evaluations, knowing the triggers for behavioral activation of the child andavoiding physical restraint as much as possible is also recommended.

These study results reflect data from only one university hospital. Study data need to be supported by large-sampled research across the country. This study was conducted by examining the emergency room admissions of patients with an ICD code for ASD as a result of retrospective review of hospital records. Therefore, patients who presented to the ED but did not have an ICD code for ASD in the hospital before might have been missed. Besides, this study was carried out in a university hospital’s ED in which the physical conditions are above the country’s standards. The ED has sections divided according to the intervention areas and single children’s rooms. This situation may have affected the difficulties identified in the interviews with caregivers. In addition, the interviews reflect retrospective information obtained from families who have presented to the ED in 2020. This is also the COVID-19 pandemic period in which the number of ED admissions decreased. These factors may also have affected the results.

Conclusions

As the clinicians’ awareness and use of more accurate diagnostic tools have increased, the ASD prevalence has gradually increased. As a result, the patients are more often in hospitals for their health care needs. To increase the quality of healthcare services for these patients, awareness studies and new interventions are needed. This study demonstrate that the crowded waiting area, the long waiting period, noise, crowded waiting area, noise, and physical restraint are most repeated challenges for children in the ED. There is a need for multicentered prospective studies with large samples to examine the needs for children with special needs, therefore to develop child-friendly EDs and to improve the quality of care and the time of patients spend in the ED.

Disclosure statement

No potential conflict of interest was reported by the authors.