Abstract
Autistic youth are more likely to experience traumatic events and may be more likely to develop trauma-related symptoms. However, accurately identifying trauma-related symptoms in autistic youth can be challenging. We examined post-traumatic stress disorder (PTSD) and other trauma-related diagnoses in youth with and without autism spectrum disorder (ASD) in a large, pediatric psychiatric emergency department (ED) in a diverse urban setting. Between March 2019 and November 2021, 2728 patients presented at our emergency psychiatric ED. Youth with ASD were 42% less likely to receive trauma-related diagnoses (prevalence ratio 0.58, 95% CI 0.41, 0.80) compared with youth without ASD. One possible explanation for this finding is that trauma-related symptoms are under-detected in youth with ASD during emergency psychiatric evaluations. There is a need for trauma screening and diagnostic instruments specifically tailored to the unique needs of youth with ASD to ensure optimal assessment and care.
Lay abstract
Autistic youth are more likely to experience maltreatment, victimization, and other traumatic events. However, it can be difficult to identify trauma-related symptoms in autistic youth, especially in those with limited verbal communication. In this study, we compared the prevalence of trauma-related diagnoses given to youth with autism spectrum disorder (ASD) to those given to youth without ASD who presented to a specialized pediatric psychiatric emergency department. We found that youth with ASD were 42% less likely to receive trauma-related diagnoses than youth without ASD. As there is evidence that youth with ASD are no less likely to experience traumatic events compared with youth without ASD, one possible explanation for this result is that trauma-related symptoms are missed during emergency psychiatric evaluations. Developing trauma screening instruments specifically designed for the needs of youth with ASD is an outstanding need.
Introduction
Autism spectrum disorder (ASD) is a common psychiatric condition characterized by difficulties with social interaction, communication, and restricted and/or repetitive patterns of behaviors or interests (DSM-5). Youth with ASD are six times more likely than youth without ASD to present to hospital emergency departments (EDs) for emotional or behavioral symptoms (Lytle et al., 2018). Accurate recognition of trauma-related diagnoses in autistic youth can ensure optimal clinical management; however, few trauma assessment measures are validated or specifically designed for use with autistic youth (Haruvi-Lamdan et al., 2018; Kerns et al., 2023; Peterson et al., 2019). Identification of symptoms as trauma-related also may depend on caregivers’ and clinicians’ knowledge of a youth’s trauma history and baseline functioning. Consequently, post-traumatic stress disorder (PTSD) and other trauma-related conditions may be underdiagnosed in autistic youth even though they are at heightened risk for abuse, maltreatment, victimization, bullying, and other traumatic experiences (Hoover & Kaufman, 2018; Kerns et al., 2015; McDonnell et al., 2019).
Reports of the PTSD prevalence among autistic youth are variable. Consequently, it is difficult to ascertain whether autistic youth are more, less, or equally likely to experience PTSD compared with non-autistic youth. A meta-analysis estimated the prevalence of PTSD in ASD to range from 0% to 3.6% (Lai et al., 2019). Other studies suggest a higher PTSD prevalence among autistic individuals (Haruvi-Lamdan et al., 2020; Li et al., 2024; Mehtar & Mukaddes, 2011; Rumball, 2019). A large population-based cohort study indicated that youth with ASD have a 20 times greater risk of developing PTSD or acute stress disorder compared with youth without ASD (Li et al., 2024). Another study reported the lifetime PTSD prevalence in youth with ASD to range from 17% to 67% among those with traumatic experiences (Mehtar & Mukaddes, 2011). Most recently, a systematic review estimated that 5% of autistic children report lifetime diagnoses of PTSD (Quinton et al., 2024). By comparison, an epidemiological study of youth reported that 7% to 8% experienced PTSD by age 18 (Lewis et al., 2019). However, studies have not reflected the diversity of the autistic community, and studies assessing the impact of age, gender, and race on trauma in autistic individuals have been limited (Quinton et al., 2024).
Diagnosing trauma in autistic youth is challenging because trauma-related symptoms may present differently in this population. First, characteristics that shape how individuals with ASD experience and react to the world may render them more likely than individuals without ASD to perceive events as traumatic (Haruvi-Lamdan et al., 2018; Kerns et al., 2015; Peterson et al., 2019). Hypersensitivities, unusual fears, and differences in sensory processing and understanding may lead autistic individuals to experience events as more aversive, distressing, or threatening than their non-autistic peers (Haruvi-Lamdan et al., 2018; Kerns et al., 2015). There is evidence that autistic individuals experience a broader range of events as traumatic (Haruvi-Lamdan et al., 2020; Kerns et al., 2023; Rumball et al., 2020).
Second, autistic individuals may be more likely to develop trauma-related symptoms or experience more distressing trauma symptoms than non-autistic individuals. Differences in sensory and emotional processing could make flashbacks and other re-experiencing symptoms more intrusive (Kildahl et al., 2020). Cognitive rigidity and perseverative tendencies could interfere with disengaging from traumatic memories, limiting trauma processing (Haruvi-Lamdan et al., 2018). Impaired social communication could make seeking support and coping after traumatic events more difficult (Haruvi-Lamdan et al., 2018). Also, ASD and PTSD may share underlying neurobiological abnormalities that increase the risk for co-occurrence (Haruvi-Lamdan et al., 2018; Kerns et al., 2015).
Third, trauma-related symptoms may manifest differently among persons with compared with without ASD (Haruvi-Lamdan et al., 2018; Kerns et al., 2015, 2023). Trauma-related symptoms among youth with ASD may include aggression, self-injury, sleep disturbances, anxiety, fearfulness, and irritability (Brenner et al., 2018; Hoover, 2015; Kerns et al., 2023). Also, trauma-related symptoms may overlap with ASD symptoms, which may lead to trauma-related symptoms being dismissed or misattributed to underlying ASD (Peterson et al., 2019; Rumball, 2019). Traumatic experiences may also exacerbate stereotyped behaviors, rigidity, and other ASD symptoms, further clouding the diagnostic picture (Haruvi-Lamdan et al., 2020; Kerns et al., 2015; Rumball, 2019).
Trauma-related conditions may be underdiagnosed among youth with ASD because of the challenges inherent in detecting and accurately identifying trauma-related symptoms in this population. Youth with ASD commonly present to hospital EDs with self-harm, aggression, behavioral dysregulation, and sleep disturbances (McGonigle et al., 2014), which could be manifestations of trauma. The proportion of youth with ASD who receive PTSD and other trauma-related diagnoses during emergency psychiatric evaluation is unknown. To address this knowledge gap, we compared trauma-related diagnoses in youth with and without ASD who presented to a large, high-acuity, pediatric psychiatric ED in a diverse urban setting.
Methods
We conducted a retrospective review of electronic health records of youth ages 5–17 years presenting at a pediatric psychiatric ED in New York, NY, from March 30, 2019, to November 15, 2021. Institutional Review Board (IRB) approval was received; informed consent was waived. There was no community involvement in this study
Demographic and clinical characteristics included age (continuous; 5–12, 13–17 years); biological sex (female, male); gender-expansive identity (yes, no); race (Asian, Black, Other, White); insurance type (public, private); COVID-19 pandemic timing (March 2019 to March 2020, March 2020 to November 2021); and length of stay (continuous; < 24, 24–72, > 72 h). Clinical diagnoses at discharge were assigned based on ICD-10 codes (ASD: F84.x; trauma: F43.x, F94.1, F94.2, T76.x, T74.x, Z62.810). Other examined discharge diagnoses include intellectual disability, learning disability, attention-deficit hyperactivity disorder (ADHD), other common psychiatric disorders, and non-psychiatric medical conditions (Supplemental Table 1). Diagnoses were based on comprehensive evaluations conducted by a multidisciplinary team supervised by a board-certified child psychiatrist.
Univariate statistics described sociodemographic characteristics and discharge diagnoses. We examined differences between patients with and without ASD using chi-square tests, two-sample t-tests, or Mann–Whitney U tests. Poisson regression models estimated the prevalence ratio (PR) and 95% confidence interval (CI) of the association between ASD and trauma diagnosis, adjusted for age, sex, race, insurance type, and length of stay. We examined whether the adjusted association between ASD and trauma differed by whether the visit was before or during the COVID-19 pandemic using a product interaction term. All analyses were restricted to each patient’s first visit during the study period.
Results
From March 2019 to November 2021, 2728 unique patients presented to the pediatric psychiatric ED (Table 1). The prevalence of ASD was 10.6% and the prevalence of intellectual disability was 4.5%. Co-occurring intellectual disability was present in 17.6% of autistic patients compared with 3% of non-autistic patients. Autistic patients were younger and more likely to be male compared with non-autistic patients, but there were no significant group differences for race, insurance type, or length of stay.
Characteristics of patients presenting at a pediatric psychiatric emergency department, overall and by diagnosis with autism spectrum disorder, New York, NY, 2019–2021 (N = 2728).
SD: standard deviation; IQR: interquartile range; ADHD: attention-deficit hyperactivity disorder.
Patients with ASD were less likely to receive trauma-related diagnoses (14.5%) compared with patients without ASD (26.3%; p < 0.001) despite those with ASD receiving a higher number of diagnoses (3.0 vs 2.0, p < 0.001; Table 1). Patients with ASD were more likely to receive diagnoses of intellectual disability, learning disability, ADHD, and medical conditions and less likely to receive diagnoses of mood disorders, adjustment disorders, and substance use disorders compared with patients without ASD diagnoses (Table 1).
In adjusted analyses, patients with ASD diagnoses were 42% less likely to receive trauma-related diagnoses (PR 0.58, 95% CI 0.41, 0.80) compared with patients without ASD diagnoses, adjusted for age, sex, race, insurance type, and length of stay (Table 2). Patients with length of stay > 72 h were more likely to receive trauma-related diagnoses than patients with length of stay < 72 h (PR 2.77, 95% CI 2.33, 3.31), adjusted for ASD, age, sex, race, and insurance type. In interaction models additionally adjusting for the time period, the association between ASD and trauma diagnosis was comparable before (PR 0.60, 95% CI 0.37, 0.98) and during the COVID-19 pandemic (PR 0.56, 95% CI 0.35, 0.88; interaction p = 0.82).
Adjusted prevalence ratios and 95% confidence intervals for association between patient characteristics and trauma-related diagnoses, pediatric psychiatric emergency department, New York, 2019–2021 (n = 2537).
Discussion
In this study of over 2500 visits to a pediatric psychiatric ED, we observed that youth with ASD were substantially less likely to receive trauma-related diagnoses compared with youth without ASD. This difference in prevalence is notable because research suggests that individuals with ASD are at least as likely as individuals without ASD to experience traumatic events (Hoover & Kaufman, 2018; Kerns et al., 2017; McDonnell et al., 2019). Our findings may reflect a tendency to under-diagnose trauma-related symptoms and conditions among youth with ASD. However, alternative explanations are possible. Autistic youth may have been referred to our ED for trauma-related reasons less frequently than youth without ASD or may have had traumatic reactions other than PTSD. It is also possible that autistic youth in our study were less likely to have been exposed to traumatic events, less likely to experience events as traumatic, or more resilient in the face of trauma, rendering them less likely to develop trauma-related symptoms.
Trauma-related symptoms may be difficult to identify in youth with ASD during emergency psychiatric evaluations. Trauma-related symptoms can be nonspecific and include aggressive outbursts, fearfulness, anxiety, irritability, self-injurious behavior, language regression, and affective dysregulation in ASD youth (Brenner et al., 2018; Hoover, 2015; Kerns et al., 2023). These symptoms can overlap with ASD features resulting in diagnostic overshadowing between ASD and trauma-related diagnoses. This phenomenon involves the misattribution of trauma-related symptoms to ASD rather than recognizing them as a distinct clinical concern (Peterson et al., 2019; Rumball, 2019). Deciphering nonspecific and overlapping symptoms may be particularly challenging in hospital EDs where time pressures, chaotic environment, and limited collateral information may impede clinicians’ ability to ascertain whether symptoms stem from traumatic events. In addition, clinicians may struggle to effectively interview and assess autistic youth for traumatic experiences and trauma-related symptoms. Social communication impairments among youth with ASD may interfere with their ability to report traumatic events or describe “classic” post-traumatic symptoms, such as flashbacks and nightmares. Sequelae of trauma, such as emotional dysregulation, cognitive rigidity, and a desire to avoid distressing memories, might further compromise their ability to relate their experiences. Limited communication abilities among youth with ASD might lead clinicians to rely on caregiver reports. Caregivers, however, might not have a comprehensive awareness and understanding of a youth’s experiences, particularly when it comes to traumatic events. These factors may lead clinicians to miss or misinterpret trauma-related symptoms. Also, there are limited trauma assessment measures and no clear clinical guidelines tailored to the needs of autistic youth. Most existing assessment tools have not been validated and may not adequately capture the unique manifestations of trauma in this population (Haruvi-Lamdan et al., 2018; Hoover, 2015; Kerns et al., 2015; Peterson et al., 2019; Rumball, 2019).
Notably, our study showed youth with a longer length of stay were more likely to receive trauma-related diagnoses. We suspect that the increased evaluation time and clinical contact afforded by longer stays facilitated the detection of trauma histories and trauma-related symptoms in youth, including those with ASD. However, it is also possible that youth with trauma-related diagnoses suffered from more severe symptomatology and required a longer stay for stabilization and treatment.
To the best of our knowledge, this is the first systematic investigation of the co-morbidity of ASD and trauma-related diagnoses in a real-world ED setting. We examined data from a specialized pediatric ED in a diverse metropolitan area. Our ED draws high-acuity, complex cases, and symptom presentations, rendering it ideally suited for investigating this complicated topic. Our child and adolescent psychiatry department is trauma-informed and attuned to the nuances of evaluating youth with autism and those with trauma histories, rendering our results particularly notable (Donnelly et al., 2021; Gudiño et al., 2014; Kuriakose et al., 2018).
Our study’s primary limitation is that data were derived from clinical records without standardized or systematic diagnoses and assessments so we relied on ICD-10 codes for diagnostic information. In addition, we were unable to verify whether the youth in our study had been exposed to traumatic events. Also, our cross-sectional analyses represent a single instance of care.
Our study provides essential information on patterns of ASD and trauma-related diagnoses in high-acuity psychiatric settings. Findings underscore the pressing need for specialized assessment instruments and clinician education to facilitate the detection of trauma-related symptoms in youth with ASD to optimize clinical care.
Supplemental Material
sj-docx-1-aut-10.1177_13623613241274832 – Supplemental material for Short report: Trauma diagnoses during emergency psychiatric evaluation among youth with and without autism spectrum disorder
Supplemental material, sj-docx-1-aut-10.1177_13623613241274832 for Short report: Trauma diagnoses during emergency psychiatric evaluation among youth with and without autism spectrum disorder by Alexandra Junewicz, Sakshi Dhir, Fei Guo, Yuxiao Song, Cheryl R. Stein and Argelinda Baroni in Autism
Footnotes
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by the Department of Child and Adolescent Psychiatry of the NYU Grossman School of Medicine.
IRB approval
IRB approval was received from the NYU Langone Program for the Protection of Human Subjects and the NYC Health + Hospitals Institutional Review Board (IRB study number 21-00448).
Supplemental material
Supplemental material for this article is available online.
References
Supplementary Material
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