This special issue features ten papers analyzing data from the Autism Inpatient Collection (AIC), a multi-site study of children and adolescents with ASD ages 4–20 years old who were admitted to one of six specialized inpatient psychiatry units. In some instances, comparison groups of ASD youth in outpatient treatment settings were also examined. In addition to contributing to our understanding of autism by utilizing the full spectrum, these papers also shed light on the inpatient ASD population and its treatment, which is critical given that approximately 11% of children with ASD are reported to be psychiatrically hospitalized before age 21 (Mandell 2008).
Predictors of inpatient psychiatric hospitalization were examined by Righi and colleagues using the AIC and a comparison cohort of age and sex matched children with ASD who had never been psychiatrically hospitalized (Righi et al. 2017). The authors examined three classes of predictors: individual characteristics, family resources, and the severity of psychiatric condition/behavioral presentation. The authors found that lower adaptive functioning, greater ASD symptom severity, having a single primary caregiver, the presence of a mood disorder, and sleep problems were all independent predictors of increased risk for psychiatric hospitalization. This study provides insight into which children with ASD may require this level of care in order to be safe and functional within their community.
Wink and colleagues completed the first study to prospectively capture psychotropic medication usage data in a large sample of ASD youth admitted to inpatient psychiatric facilities (Wink et al. 2017). Across the cohort, 91.7% were treated with at least one psychotropic medication, which is much higher than the 55–65% rate described in most outpatient reports (Rosenberg et al. 2010). Antipsychotics were the most frequently employed class of medications, which is not surprising given that acute behavioral crisis typically precipitates admission. Relatively high rates of antidepressants, ADHD, or sleep medications underscore the prevalence with which these psychiatric comorbidities impact this population. Participants remained on a relatively stable number of psychotropic medications from admission to discharge, underscoring the behavioral severity, comorbidities, and treatment refractory nature of youth with ASD requiring inpatient admission. Interestingly, the percentage of patients on zero medications increased from 2.9% at discharge to 36% 2 months post-discharge, which may point to a discrepancy between inpatient and community practitioner prescribing practices or to durability in the effect of inpatient behavioral treatment.
To examine effects of specialized inpatient treatment, an analysis of changes in problem behavior severity from admission to discharge and 2 months post-discharge was conducted by Pedersen and colleagues (Pedersen et al. 2017). Using the Aberrant Behavior Checklist-Irritability subscale, the authors found that serious problem behaviors (physical aggression, self-injury and severe tantrums) decreased from admission to discharge, and that improvement was sustained at 2 months post-discharge, though improvement in tantrum-like behaviors regressed slightly from discharge to the 2 month follow-up. Despite its disproportionately high significance for children with ASD, research on psychiatric hospital treatment has mostly emerged only in the past decade, with increasing attention toward the utilization of inpatient psychiatric services and the development and effectiveness of specialized inpatient programming.
Two studies in this special issue utilized the AIC’s large amount of data on minimally verbal and intellectually disabled youth to deepen our understanding of the relationship between verbal ability and psychiatric symptom presentation and problem behavior. Lerner and colleagues compared children from the AIC with those recruited through an outpatient developmental disabilities clinic, to provide the first large scale estimate of differences in psychiatric symptom profiles between minimally verbal and fluently verbal youth with ASD, using the Child and Adolescent Symptom Inventory 5 (CASI-5) (Gadow 2013; Lerner et al. 2017). Both verbal ability groups were significantly impacted by psychiatric co-morbidity as assessed by symptom severity. Fluently verbal youth with ASD were more likely to exceed clinical cut-offs for depression and oppositional defiant disorder, and had greater impairment due to depression symptoms compared to minimally verbal individuals. The finding that fluently verbal youth were more likely to experience depressive or oppositional symptoms was robust even after controlling for IQ, and prompts speculation that verbal youth may be at particular risk for experiences that produce depressive and oppositional reactions.
Examination of the relationship between verbal ability and problem behaviors in ASD has produced conflicting results, with some researchers reporting an inverse relationship, and others the opposite (Baghdadli et al. 2003; Matson et al. 2009). Using the AIC cohort, Williams et al. examined problem behaviors at hospital admission and found that both fluently verbal and minimally verbal youth exhibited a high severity and frequency of problem behaviors (Williams et al. 2017). Controlling for IQ and age, the verbal ability groups did not differ in their severity of SIB, stereotypy, or irritability on the Repetitive Behavior Scale—Revised, SIB subscale (RBSR-SIB) (Bodfish et al. 2000; Lam and Aman 2007) or the Aberrant Behavior Checklist—Irritability subscale (ABC-I) (Aman et al. 1985). Instead, increasing problem behavior severity was associated with lower adapting/coping scores on the Vineland 3, even after controlling for verbal ability. Adaptive/coping behaviors require flexibility and differential responses to contextual demands, as well as cognitive control, regardless of verbal ability. This finding suggests the potential primacy of the relationship between problem behaviors and poor adapting/coping ability, distinct from verbal ability, and underscores the importance of developing adapting/coping strategies to address problem behaviors across the spectrum.
While it is well known that children with developmental disabilities are at higher risk for abuse (Hall-Lande et al. 2014), how an experience of trauma may present in youth with ASD is not well described. Brenner and colleagues utilized the AIC data to identify that a history of trauma was associated with more intrusive thoughts, distressing memories, loss of interest, irritability, and lethargy on the CASI-5 and ABC (Brenner et al. 2017). Individuals meeting clinical criteria for post-traumatic stress disorder (PTSD) scored higher on measures of externalizing behavior, suggesting that problem behaviors, which are often approached from a functional perspective in applied behavioral analysis (ABA), may in some instances also be symptomatic of trauma. A history of trauma was also unrelated to the severity of core symptoms of ASD, suggesting that less severe ASD core symptoms are not necessarily protective from traumatic experiences. This study revealed a high rate of parent-reported trauma for inpatient youth with ASD and described associated behavioral manifestations, underscoring the need for trauma screening and awareness of potential red flags in a child’s behavior.
In a related vein, Horowitz and colleagues highlighted the prevalence of suicidality in verbal hospitalized children with ASD in the AIC, finding that 22% often or very often talked about death or suicide, by parent report (Horowitz et al. 2017). Importantly, talking about death or suicide was associated with meeting clinical criteria for co-morbid mood and anxiety disorders on the CASI-5, again suggesting that youth with ASD are not protected from serious problems, such as suicidality, when they experience anxiety or mood impairment. These findings indicate a critical need to develop valid and reliable suicide screening measures for this population.
Sannar et al. evaluated the relationship of behavioral presentation at admission and sleep during the hospitalization (2017). The authors found that greater irritability, stereotypy, and hyperactivity were associated with significantly fewer minutes of observed sleep during the last five nights of the hospital stay. The findings suggest that after adjusting to the hospital unit and when nearing readiness for discharge, a relationship between sleep and problem behavior emerges, raising the possibility of an etiology common to both sleep and behavior problems in ASD, such as neurobiological factors, psychiatric or medical comorbidities, or medication side effects.
The prior studies all used parent-report measures to examine associations between clinical indicators of psychopathology and observable behaviors and/or patient characteristics. A slightly different approach was taken by Handen et al. to examine risks for self-injurious behavior (SIB), comparing parent-reported SIB at admission and SIB observed by direct care staff in the inpatient setting. The authors found that while 74% of youth had parent-reported SIB at home, only 25% were observed to engage in SIB while hospitalized. Patients with SIB in both home and hospital had significantly lower non-verbal IQ, greater social communication deficits, more stereotyped behavior and higher scores on the Repetitive Behavior Scale Revised, SIB subscale (Handen et al. 2018). This paper provides vital information that may aid caregivers and clinicians in identifying SIB risk in children with ASD.
Finally, this special issue highlights the urgent need for new measurement tools to adequately capture important dimensions in youth with ASD across the full range of intellectual and verbal abilities. Specifically, a previous article by Mazefsky et al. describe development of the Emotion Dysregulation Inventory (EDI), a parent-report questionnaire designed to measure emotional distress and difficulty with emotion regulation in ASD, including in minimally verbal and intellectually disabled individuals (Mazefsky et al. 2016). The EDI was developed using guidelines from the Patient-Reported Outcomes Measurement Information System (PROMIS®; National Institute of Health 2014) and tested with the AIC sample. The psychometric properties of the EDI are reported in the current special issue (Mazefsky et al. 2018). The EDI was sensitive to change from admission to discharge and was normally distributed across the range of verbal ability and non-verbal IQ. The EDI continues to be used, normative data are being collected in the AIC and other research cohorts, and the measure will likely become a valuable tool to better assess symptoms and outcomes across the spectrum.