A ‘choice’, an ‘addiction’, a way ‘out of the lost’: exploring self-injury in autistic people without intellectual disability

Abstract

Background Non-suicidal self-injury (NSSI) describes a phenomenon where individuals inflict deliberate pain and tissue damage to their bodies. Self-injurious behaviour is especially prevalent across the autism spectrum, but little is understood about the features and functions of self-injury for autistic individuals without intellectual disability, or about the risk factors that might be valuable for clinical usage in this group. Methods One hundred and three autistic adults who responded to an online advertisement were classified as current, historic or non-self-harmers in accordance with responses to the Non-Suicidal Self-Injury Assessment Tool (NSSI-AT). Multinomial regression aimed to predict categorisation of participants in accordance with scores on tests of autistic traits, alexithymia, depression, anxiety, mentalising and sensory sensitivity. Linear regression examined relationships between these predictors and the range, frequency, lifetime occurrence and functional purposes of NSSI. Qualitative analysis explored the therapeutic interventions that participants had found helpful, and what they wished people understood about self-injury. Results Current, historic and non-self-harming participants did not differ in age, age at diagnosis, male-to-female ratio, level of employment or education (the majority qualified to at least degree level). The most common function of NSSI was the regulation of low-energy affective states (depression, dissociation), followed by the regulation of high-energy states such as anger and anxiety. Alexithymia significantly predicted the categorisation of participants as current, historic or non-self-harmers, and predicted use of NSSI for regulating high-energy states and communicating distress to others. Depression, anxiety and sensory-sensitivity also differentiated participant groups, and sensory differences also predicted the range of bodily areas targeted, lifetime incidence and frequency of NSSI. Sensory differences, difficulty expressing and identifying emotions also emerged as problematic in the qualitative analysis, where participants expressed the need for compassion, patience, non-judgement and the need to recognise diversity between self-harmers, with some participants perceiving NSSI as a practical, non-problematic coping strategy. Conclusions Alexithymia, depression, anxiety and sensory differences may place some autistic individuals at especial risk of self-injury. Investigating the involvement of these variables and their utility for identification and treatment is of high importance, and the voices of participants offer guidance to practitioners confronted with NSSI in their autistic clients. Electronic supplementary material The online version of this article (10.1186/s13229-019-0267-3) contains supplementary material, which is available to authorized users.

Links between self-injury and suicidality in autism

“…Further exploration of this relationship was motivated by questions raised in our previous study of NSSI in autism [40]. We were intrigued by the dichotomy between individuals greatly troubled about their self-injury and those who seemed to accept it matter-of-factly.…”

“…Following on from our previous work, we query whether the conscious perspectives or meanings ascribed to NSSI are also important determinants of the suicide risk faced by individuals who self-harm. Our qualitative findings [40] suggested a striking dichotomy between participants who expressed distress and/or a lack of conscious control over NSSI, and those who framed it as a conscious choice, a neutral or even positive option to deal with "overwhelming feelings," "stressful situations," or even "to achieve homeostasis". This diversity was also manifest in the quantitative data, where 17% of self-harming participants did not perceive their self-injury as problematic in their lives, 14% were neutral about it, 24% saw perceived it as quite problematic, and 9% found it strongly problematic.…”

“…As stated previously, the majority of participants [2] (82) completed this measure as part of a previous study [40] and then completed the SBQ-R and the Interpersonal Social Evaluation List (ISEL-12) in the context of the new study. The small remainder (22) completed the SBQ-R and the ISEL-12 first in the context of the new study, and were then willing to complete the NSSI-AT as an optional extra.…”

“…This study was advertised to participants as an investigation of stress and physical and mental health. We invited back autistic participants from the previous investigation into self-injury [40], who had been recruited from support groups local to the primary researcher (Dorset), from social media, and from the Cambridge Autism Research Database (CARD) at the Autism Research Centre, Cambridge, UK. There was a high rate of return with 82 participants responding (80% of the original sample).…”

“…Our own group conducted a more in-depth analysis of self-injury in 103 autistic adults without intellectual impairment [40]. As in the previously described study [35], we corroborated an average onset age in adolescence; the most common methods of self-injury (scratching/ pinching and cutting) and most common bodily locations (arms and hands); and most common initial motivations (anger at the self and upset, though a large proportion of our participants claimed to have stumbled on self-injury "accidentally" and found it served a functional purpose, i.e., in fulfilling some need).…”