Emotion Dysregulation in Youth Presenting for Evaluation to a Specialized Autism Clinic
Objectives: To compare (1) the prevalence of ED among youth with and without ASD and (2) whether youth with and without ASD differ in ED symptom profiles, parenting stress and treatment utilization.
Methods: Data were from 1099 youth (n=727 with ASD; n =372 without ASD), ages 6 to 18 years (M=10.2, SD=3.0), who were seen by a clinician for evaluation at a specialized ASD clinic between 2014-2017. ASD diagnosis was confirmed via clinical evaluation. Parents completed the Child Behavior Checklist (CBCL), the Parenting Stress Index-4th Edition, and customized clinic forms that asked about current mental health treatments. ED was assessed using the Dysregulation Profile from the CBCL, which is a composite T score of the aggression, anxious/depressed, and attention problems subscales (Achenbach, 1991). Moderate and severe ED were defined as T scores between 180-210 and above 210, respectively. Bivariate (Chi-square and t-tests) and multivariate (logistic, multinomial and linear regressions) analyses were employed to examine the associations between ED, ASD, parental stress, recipient of treatment, and demographics (age, gender, race, and insurance status).
Results: Overall, 55% of youth with ASD and 67% of youth without ASD met the cutoff for ED. Youth without ASD were more likely to have severe ED (27% vs. 15%), however, the proportion of youth with moderate ED was comparable across the groups (40% for both groups). After adjusting for demographics, youth with ASD had a significantly lower probability of having moderate/severe ED (OR = 0.62; p < 0.001), specifically severe ED (0.41; p < .001). When examining symptom profiles, all three Dysregulation Profile subscales were significantly lower in the ASD group (all p < .05). Parenting stress levels were significantly related to increasing levels of ED, regardless of ASD diagnosis, (p < 0.001). Overall, 37% of youth with ED were receiving no treatment and 21% were receiving both pharmacotherapy and behavioral therapy.
Conclusions: The majority of youth presenting to an ASD clinic had moderate or severe ED. Severe ED was more common in youth who did not end up with an ASD diagnosis. This finding likely reflects the complex mental health issues of youth who present for ASD evaluations but do not have ASD. It is therefore critical that clinicians not rely on ED as a specific feature of ASD, but rather maintain focus on obtaining a thorough developmental history of core ASD features. The high levels of parenting stress and alarmingly limited number of youth with ED engaged in treatment demonstrates the importance of early detection and facilitating access to care for all youth with ED.