Roughly 70% of autistic children have at least one co-occurring psychiatric diagnosis, and over 30% have two or more. Rates of problem behaviors are also high, with 56% of autistic youth directing aggression toward caregivers and 30% engaging in self-injury. There is also growing evidence that suggests that rates of suicidal ideation and attempts are higher in autistic adolescents and young adults compared to the general population.
Parents and family members often turn to the emergency room when a mental health crisis occurs, as well as psychiatric hospitalization. While understandable, these are not ideal solutions since these experiences can result in seclusion/restraint, long wait times, use of multiple drugs, and care that is often not sensitive to the patient’s needs.
Dealing with mental health issues before they spiral out of control through outpatient crisis screening and management is a better alternative. However, no research exists on outpatient screening or multidisciplinary treatment approaches for mental health crises experienced by autistic individuals. In a 2019 OAR-funded research study, “A Pilot Study of Outpatient Mental Health Crisis Screening in Youth and Young Adults with Autism Spectrum Disorder,” Luke Kalb, Ph.D., an assistant professor and public health researcher at Johns Hopkins University, sought to address that lack by:
- Examining the feasibility and validity of an outpatient crisis screening protocol among 400 autistic youth who are served at two specialized autism community clinics.
- Identifying the prevalence and basic characteristics of autistic youth in crisis.
- Gathering feedback from caregivers and providers about their experiences with the protocol.
The research team used two clinics for the study. The Center for Autism and Related Disorders at the Kennedy Krieger Institute (KKI-CARD), in Baltimore, Maryland, serves a large, racially mixed, urban population of youth with ASD. The second clinic, the WellSpan-Philhaven Center for Autism and Developmental Disorders (WP-CADD), outside Harrisburg, Pennsylvania, serves a mostly rural white population, all of whom receive medical assistance. Two licensed social workers and two board-certified behavioral analysts at WP-CADD participated in the study, and three child and adolescent psychiatrists participated at KKI-CARD.
Data collection occurred between July 20, 2020 and April 29, 2021 with a total of 404 autistic children screened. Most (77%) were males. Six percent were Hispanic, 14% Black/African American, 71% White, and 15% other race. The youth ranged in age from 1 to 25 years old.
Dr. Kalb and his team used a parent-reported measure, the Mental Health Crisis Assessment Scale (MCAS), which they created specifically for autistic youth. The MCAS defines crises as “the presence of acute psychiatric symptoms and the perceived inability of the parent to manage these symptoms.” Parents can complete the MCAS in about 10 minutes. They are asked to:
- Rate the severity of 14 mental health behaviors (e.g., physical aggression, elopement, dangerous impulsivity).
- Select which of the 14 behaviors could cause the greatest harm to the child.
- Report on the severity of the behaviors they selected and whether they believe that they can safely manage the behavior.
The screening rate was very high (80%), suggesting mental health crisis screening is feasible in an outpatient center. The MCAS was strongly aligned with clinician determination of crisis, suggesting that it is a valid screening protocol. Of the 160 parents who responded to the satisfaction survey, 95% felt the survey was not too long and not upsetting while 94% thought it was helpful for their clinician. All seven clinicians who participated reported that the MCAS was very/extremely helpful in facilitating communication with parents and identifying safety concerns. None reported hearing from the parents that the MCAS was burdensome, and most (62%) felt the MCAS never or rarely interrupted clinical flow.
Despite being in active mental health treatment, 25% of the autistic youth who were screened were at risk for a mental health crisis. Dr. Kalb and his team found the MCAS to be highly accurate in identifying youth at risk for crisis. Parents and clinicians also found it to be a valuable tool. Ultimately, this study supports the value of mental health crisis screening via the MCAS.
As a result of study findings showing high levels of crisis, Kennedy Krieger provided funding for the research team to develop a brief crisis prevention-intervention program. Once that intervention has been developed and tested, the team will submit a combined screening and intervention trial to the National Institutes of Health.
Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.