News and Knowledge

In November, OAR’s Board of Directors authorized funding for six new applied autism research studies in 2021. These new grants, totaling $240,000, bring OAR’s total research funding to more than $4.4 million since 2002. This article is the fifth of six previews to be featured in The OARacle this year.

Since 2007, rates of suicide deaths have increased more than 75% in adolescents age 15 to 19 and nearly tripled in children between the ages of 10 and 14. In response to this public health crisis, medical organizations, including the American Academy of Pediatrics and The Joint Commission, which is an accrediting body for hospitals and other healthcare providers, have recommended screening for young people and for all patients presenting to hospitals with behavioral health concerns. Unfortunately, universal screening efforts that have been put in place as a result often ignore the complexity of special populations, such as autistic youth. This is especially concerning given that autistic individuals demonstrate a higher prevalence of suicide-related symptoms and higher incidence of death by suicide.

This OAR-funded study, Is Universal Suicide Screening in the ED Universally Effective? Considerations for Youth with ASD, will be the first to evaluate the effectiveness of universal screening in the emergency department for autistic youth compared to non-autistic youth. Led by co-principal investigators, Paige E. Cervantes, Ph.D., clinical assistant professor, and Sarah Horwitz, Ph.D., professor, both in the Department of Child and Adolescent Psychiatry at the NYU Grossman School of Medicine, the study will also be the first to document the differences in physician care and confidence in diagnosing and treating suicidal autistic and non-autistic youth.

Methodology and Evaluation

The study will be an extension of an effort by New York University’s Langone Hospital to develop a universal mental health screening program, with a focus on suicide. Both research teams will use a new tool, Kiddie-Computerized Adaptive Tests (K-CAT), to efficiently measure mental health symptoms and improve physician competence and confidence.

The goals of the OAR-funded study are to:

1. Evaluate how the K-CAT performs across autistic and non-autistic youth. If the K-CAT detects risk similarly across groups, universal screening would be more feasible and effective. The Ask Suicide-Screening Questions (ASQ), a commonly used suicide screening tool, will also be administered so that researchers can compare results to the K-CAT.
2. Abstract electronic medical records to identify differences in disposition when suicidality is identified in autistic and non-autistic youth. These comparisons will be conducted to identify discrepancies in care prior to staff training.
3. Measure physician behavior and self-efficacy in assessing and managing suicide risk in autistic youth compared to non-autistic youth at baseline, after the general training provided through the parent project, and again after autism-specific training that is the focus of the OAR-funded study.

Drs. Cervantes and Horwitz will conduct the study in the Children’s Comprehensive Psychiatric Emergency Program (CCPEP) in Bellevue Hospital, which serves a diverse patient population, nearly 75% of whom receive services funded through Medicaid and over half are categorized as living in high to very high levels of poverty. The research team will ask autistic youth between the ages of 7 and 18 and their caregivers if they would like to participate.

Projected sample size is 180 youth, plus their caregivers. Previous research has estimated that 10.7% of patients presenting to the CCPEP have a developmental disability. Given that percentage, the researchers expect to identify approximately 19 autistic youth with a goal of including youth with a range of cognitive levels.

The research team will also enroll approximately 13 CCPEP physicians, at both the trainee and attending levels. Although attending physicians are child and adolescent psychiatrists, they are not autism specialists so the researchers expect that they will have significantly lower knowledge and confidence caring for autistic youth.

Baseline Phase: During the three-month baseline phase of the parent project, trained research assistants will conduct eight-hour screening shifts three to four days per week. The parent project research team, which will include Drs. Cervantes and Horwitz, will analyze the data collected to determine what level of agreement there is between the K-CAT results and physician behavior to guide the nonspecific physician training. Prior to the training, the researchers will administer a physician survey to capture information on training, experience, and ratings of self-efficacy caring for suicidal autistic and non-autistic youth.

Nonspecific Feedback Phase: During the three-month feedback phase, the OAR-funded research team will collect data to compare to baseline data, comparing physician confidence and behavior before and after the nonspecific training. Drs. Cervantes and Horwitz expect physician confidence and behavior in caring for autistic youth to remain significantly lower compared to non-autistic youth.

Autism-Specific Training Phase: Assuming that expectation is correct, the OAR-funded research team will develop ASD-specific training as part of the proposed study extension. The training will be piloted with a group of five youth and five family stakeholders to obtain important feedback and ensure clarity and comprehensiveness of the training. The interactive training will include:

• Prevalence rates of autism and of suicidality in autism, both from published literature and the data collected in previous study phases, including data that illustrates the rate of under-diagnosis in autistic youth
• What autism is and the relationship between core and associated symptoms and suicidality, including documented suicide risk factors in autism, and unique challenges to assessing suicidality in autistic youth
• The importance of identifying symptoms and obtaining an autism diagnosis for addressing suicide risk
• Limitations of available tools and strategies for assessing and managing suicide risk in autistic youth
• Preliminary data on differences in K-CAT performance between autistic and non-autistic groups
• Adaptations that can be used to improve suicide risk assessment and management in autism, emphasizing special considerations for youth across cognitive levels

Autism-Specific Feedback Phase: The OAR-funded research team will analyze the data collected after the autism-specific training in order to evaluate its impact on physician care and confidence and examine data on K-CAT performance relative to clinical judgment.

Outcomes

• The study will include data collected from a diverse set of youth across age groups, ethnicities/races, genders, and cognitive levels, providing the ability to comprehensively analyze that data to identify care discrepancies among groups, and potentially highlight examples of healthcare inequity for autistic individuals.
• The results of the K-CAT screening could be a first step in determining whether it can be reliably used in emergency departments and community settings to widen the availability of screenings for mental health symptoms.
• Finally, the autism-specific training that the researchers will develop based on this study is essential for physicians to be able to adequately assess autistic individuals for mental health issues.

The researchers’ ultimate goal is to develop, evaluate, and disseminate autism-specific physician education, offering data-based considerations for adapting suicide screening and management strategies to improve care for autistic youth.

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.