Defining Nonsuicidal Self-Injury in Autistic People: A Framework for Assessment Using Key Elements to Aid in Characterization

Abstract

Nonsuicidal self-injury (NSSI) is the intentional destruction of one’s own body tissue without suicidal intent and for purposes that are not socially or culturally accepted or practiced (e.g., intentional self-cutting, self-biting). Research on NSSI in autistic people is limited but increasing. NSSI is strongly associated with suicide, and it is an important behavior to better understand given the high rates of NSSI and suicide in autistic people. To date, research that focused on autistic people has mostly used self-report questionnaires to assess NSSI, with a more limited application of clinical interviews of NSSI. However, researchers and clinicians may find it challenging to determine whether a behavior is categorized as NSSI in autistic people, especially since autistic people may present with other behaviors that cause self-injury. We build upon the International Society for the Study of Self-Injury's key elements in defining NSSI to support better reliability of NSSI assessment across studies. We emphasize that when assessing for NSSI the behavior must meet these key elements: (1) not intended to cause death, (2) the physical self-injury/harm is intentional, (3) there is immediate physical injury following the behavior, (4) the physical injury is to the external body, not internal body, (5) the physical injury is self-imposed and not done by another being, and (6) it is not a part of social or cultural practices. It will be important for future work to develop measures that can accurately assess NSSI in autistic people and advance mechanistic and intervention research related to NSSI.

Community Brief

Why is this topic important?

Nonsuicidal self-injury (NSSI) may be quite common in autistic people. NSSI is intentional (on purpose) physical injury to one’s own body without intending to cause death and is related to suicidal thoughts and behaviors. Yet, few researchers study NSSI among autistic people. NSSI is often not clearly defined in measures and may be difficult to tell apart from other self-harm behaviors like behaviors that result in injury during a meltdown or a stim that results in injury. If researchers do not consistently decide what counts as NSSI in autistic people, that can have further effects on our knowledge, assessment, and treatment of NSSI in autistic people.

What is the purpose of this article?

We aim to (1) briefly summarize how NSSI and self-injury research have developed, (2) explain why it can be hard to measure NSSI, (3) provide key elements in defining NSSI, and (4) suggest future directions in the study of NSSI in autistic people. These key elements and recommendations will help clinicians and researchers define and measure NSSI when interviewing autistic people.

What personal or professional perspectives do the authors bring to this topic?

Authors bring lived, research, and clinical experience to this topic. We are a team of autistic and non-autistic researchers and clinicians. The authors are trained in a variety of disciplines including clinical and developmental psychology, rehabilitation science, counseling, and neuroscience with a strong collective expertise in autism, NSSI, suicidality, repetitive behaviors, emotion distress, and mental health.

What is already known about this topic?

NSSI may be quite common in autistic people. Prior work is limited to autistic people with mental health concerns, and these studies suggest high rates of history of NSSI in autistic people. Researchers usually measure NSSI with self-report surveys. We know it is difficult for individuals themselves and clinicians to determine whether a behavior counts as NSSI. Using interviews is helpful in measuring NSSI, but they are not used often in autism research.

What do the authors recommend?

We suggest the following framework for assessing NSSI: when assessing NSSI behaviors as part of an interview, six key elements define NSSI. (1) The behavior was not intended to cause death, (2) the self-injury/harm was intentional, (3) there was immediate physical injury following the behavior, (4) the injury is to the external body, not internal body, (5) the injury is self-imposed and not done by another being, and (6) the behavior is not a part of social or cultural practices. We provide recommendations for improving the assessment of NSSI in autistic people.

How will these recommendations help autistic adults now or in the future?

By applying these key elements, clinicians and researchers will be able to more accurately and consistently assess NSSI in autistic people. This will help advance precise measurement of NSSI in autistic people, with potential future impact on screening and intervention for NSSI in autistic people.