Mental Health Crises in Youth with Autism Spectrum Disorder
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Date
2017-06-20
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Johns Hopkins University
Abstract
Background: Roughly 75% of youth with Autism Spectrum Disorder (ASD) have a co-occurring psychiatric disorder. These symptoms can pose a risk of injury to self or others when the child is in crisis. However, little is known about the epidemiology of mental health crises among this population. The goal of this dissertation was to fill this gap by examining mental health crises among youth with ASD from several interrelated perspectives - service use, measurement, and intervention - across three disparate studies.
Objective: The first study examined psychiatric emergency department (ED) use and receipt of outpatient mental health care among youth with ASD compared to two groups: youth with Attention Deficit-Hyperactivity Disorder (ADHD) and no ASD and youth without either diagnosis. The second study reported on the psychometric evaluation of the first crisis assessment measure designed specifically for youth with ASD: the Mental Health Crisis Assessment Scale (MCAS). The third study assessed one year pre-post effects of the START (Systemic, Therapeutic, Assessment, Resources, Treatment) program on caregivers’ perceived support from and access to mental healthcare for their dependent, changes in the dependents’ mental health symptoms, and psychiatric ED visits as well as psychiatric hospitalizations.
Methods: Data for the first study came from adolescents ages 12-17 years with ASD (N=46,323), ADHD and no ASD (N=408,066), and without ASD or ADHD (N=2,330,332) enrolled in the 2010-2013 MarketScan Commercial Claims Database. Psychiatric ED visits were identified when the primary diagnosis billed indicated a psychiatric disorder (ICD-9 290-319.XX). Outpatient mental health visits were identified when a reimbursed claim was submitted by a mental health professional or a mental health-related procedure was billed during the visit. In the second study, data on the MCAS were gathered from 606 caregivers of a child with ASD, ages 3-25 years, enrolled in the Interactive Autism Network, an online autism registry. The MCAS is a 27-item caregiver report measure that asks the informant to rate the severity of 14 emotional and behavioral symptoms. The caregiver then selects the behavior they perceive as the most dangerous and rates the acuity of as well as their efficacy in managing this behavior. The MCAS was tested for internal consistency (via Cronbach’s alpha), construct validity (via Exploratory and Confirmatory Factor Analyses), criterion validity (via Receiver Operator Characteristic curves, with a semi-structured clinician interview serving as the criterion variable), and convergent validity (by examining the association between the MCAS and measures of parental stress and frustration, family distress, and urgent psychiatric service use). In the third study, one year pre-post data from 111 caregivers of an individual aged 14-71 years (Mean age = 21y, SD = 11y) with an Intellectual/Developmental Disability (IDD), 58% of whom had ASD, who were newly enrolled in the START program. Perceived support from and attitudes towards the mental healthcare system were assessed via the Family Experiences Interview Schedule (FEIS). The Aberrant Behavior Checklist (ABC) assessed the presence of challenging behaviors and history of psychiatric hospitalization and ED visits for mental health purposes were gathered by the individuals’ service coordinator.
Results: In the first study, youth with ASD had an increased rate of psychiatric ED visits compared to youth without ASD or ADHD (IRR = 9.9, 95% CI: 9.4, 10.4) and youth with ADHD only (IRR = 2.0, 95% CI: 1.9, 2.1). Youth with ASD also had increased use of outpatient mental health services 30 days before and 30 days after the ED visit when compared to both comparison groups (all p<.001). In the second study, the MCAS demonstrated robust psychometric characteristics, including strong internal consistency (α = .85), internal construct validity (RMSEA = .08. CFI = .97, TLI = .95), and external criterion validity (Area Under the Curve = .85). Strong positive relationships emerged between the MCAS and measures of family distress (r = 0.56), parental stress and frustration (r = 0.48), and use of emergency psychiatric services (OR =24.2, 95% CI: 8.6 – 68.2; all p<.05). Notably, forty percent of parents reported their child experienced a mental health crisis over the preceding three months. In the final study, caregivers enrolled in START reported significant improvement in caregiver service experiences (FEIS total score, t = 5.4) and a decrease in ABC subscale scores (Hyperactivity, t = 6.0; Irritability, t = 5.9; Lethargy t = 4.9), with effects sizes in the moderate range (d ranged from .7 to .6). A significant decrease in psychiatric ED use (z = 2.9) and inpatient psychiatric hospital services (z = 2.6) was also observed (all p<.001 for Study 3).
Conclusion: Youth with ASD were at increased risk of visiting the ED for psychiatric purposes; however, their service use was not simply a product of decreased access to outpatient psychiatric care. Increased psychiatric ED use among this population may be due to high levels of mental health crises, which was found in the second study. Results from the psychometric analyses suggest the MCAS has the potential to identify youth with ASD at-risk for experiencing a mental health crisis and the START program holds the promise of improving outcomes, for both the caregiver and service user, while reducing dependence on costly and restrictive hospital-based services. It is hoped that the work presented here will lay the groundwork for future research on mental health crises, with the ultimate aim of improving the lives of individuals with a developmental disability and/or serious mental illness and those who care for them.
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Keywords
autism, crisis, mental health, emergency, intellectual disability