Autistic children and adolescents experience suicidal thoughts and behaviors at higher rates than non-autistic children and adolescents, but there are currently no validated suicide risk assessment tools for autistic youth. This is problematic because it is well recognized that, due to differences in interpretation and experience, measures used in the general population are often not valid for use with autistic individuals and may lead to inaccurate results.

In a pilot study, titled “Perspectives on the K-CAT-SS for Autistic Youth“, researchers have evaluated the commercially available Kiddie-Computerized Adaptive Testing Suicide Scale (K-CAT-SS) through valuable input from autistic youth, caregivers, and autism specialist clinicians on the applicability of a novel measure of  suicide and mental health symptoms for use with autistic youth. Autistic youth were originally excluded from the K-CAT®’s development sample, and it is well documented that measures validated for the general population may not be acceptable or yield accurate results for autistic individuals. 

This research, led by Dr. Paige Cervantes, Assistant Professor in the Department of Psychiatry at Virginia Commonwealth University, underscores the critical importance of evaluating and adapting existing measures with input from the autism community. Dr. Cervantes and her colleagues evaluated a screening program for autistic youth using the K-CAT® within the context of a larger project to enhance suicide risk screening in emergency departments for all youth aged 7-17 years. Participants, including youth and caregivers, completed the K-CAT-SS followed by a web-based questionnaire and a virtual interview to gather impressions and identify areas for improvement, particularly focusing on the K-CAT®’s usability and completeness for autistic youth. Autism specialist clinicians also assessed the K-CAT®’s appropriateness for autistic youth and identified relevant symptoms not captured by the items. 

This pilot study engaged 14 participants, highlighting several key findings:

• Study participants were overall satisfied with the K-CAT® as a holistic evaluation
• The main study concerns included terminology, confusing phrasing, use of figures of speech, lack of specificity, and failure to account for the importance of context (i.e., different responses for different situations or triggers)
• On the K-CAT-SS, some items were labeled as potentially problematic in the assessment of autistic youth, with language issues most often cited in their rationale (lack of clarity, difficult vocabulary, abstract language)
• There was concern regarding diagnostic overlap, i.e., K-CAT-SS item inquiring about symptoms or behaviors that may be associated with autism rather than suicide risk
• Worry about youth emotional reaction (i.e., distress, shame, increased perseveration) when responding to K-CAT-SS items, and issues regarding item relevance

Dr. Paige Cervantes, the lead investigator, commented, “Despite high mental health needs, there are very few tools available to identify psychiatric symptoms in autistic youth and currently no validated suicide risk screening measure for this population. To improve detection and thus treatment of mental health symptoms and suicide risk, it is essential we work with the autism community to evaluate and adapt existing measures, such as the K-CAT®, for children and adolescents on the spectrum.” Several participants suggested additional topics for consideration in suicide risk assessment for autistic youth, including loss of interest in special interests, perseveration, emotion dysregulation, and non-suicidal self-injury (NSSI).

This pilot research study represents a crucial step towards developing validated suicide risk assessment tools for autistic youth, aiming to improve detection and intervention. The team plans to use additional community feedback to refine the K-CAT-SS for future use in this vulnerable population.

For more information on this study and its implications for suicide prevention in autistic youth, please refer to the full research article, published in Journal of Developmental and Physical Disabilities.