My first introduction to self-harm in autism was with headbanging. While headbanging is a relatively uncommon version of self-harm in the general population, for autistic individuals, headbanging is much more common; in one study, it represented the most prominent form of self-injury in a sample of autistic youth (Akram et al., 2017).
I had associated headbanging with intellectual disability, yet as a therapist with some specialty in neurodivergence, I have been surprised by the number of autistic folks I have met without an intellectual disability who engage in this kind of self-harm. I wanted to learn more.
There is the old trope of a person who reaches a breaking point, snaps, and bashes their head. Sitcoms have pointed fun at this for ages. Yet while overwhelm does appear to play a role in self-harm within autism, when met with the shame and fear of those who engage in behavior, it becomes anything but a joke.
Headbanging can be a dangerous form of self-harm. In addition, many report feeling out of control during these times. It can be scary for all involved.
Self-harm is common in autism, and while estimates of its prevalence vary, studies have indicated that the problem may affect as many as 24 percent (License et al., 2020) to 33 percent of samples (Akram et al., 2017). Low mood and impulsivity have been noted as risk factors for self-harm in at least one autistic sample (License et al., 2020).
In my experience, the patterns of self-harm in autism often differ from how they show up in neurotypicals. In autism, overwhelm, mindstorms (meltdowns), and fatalistic thinking tend to be engaged when self-harm is present. The stress of neurotypical demands, social isolation, sensory overload, and perfectionism can create a perfect storm for overwhelm.
When met with negative self-beliefs—often formed by living in a world set up for neurotypical people—grounds are ripe for self-harm. Research shows that autistic people often carry lower levels of self-esteem and sense of power in their lives than neurotypical controls (Nguyen et al., 2020).
Tragically, this sometimes reaches a level of self-hatred. Repeated interpersonal traumas such as lack of acceptance, pushing away sensory needs, isolation, exclusion, and the need to mask can worsen this already low self-worth while creating extreme, negative beliefs about one's self. When these beliefs are triggered in situations of imperfection, coping can be exceptionally hard. The person may resort to old stories they have told themselves of not being good enough, not belonging, and that this will never change.
Lastly, during these storms, there tends to be a fatalistic quality. It can feel like everything is bad and always will be. The level of upset becomes intense, leading someone to wish for immediate relief. Unfortunately, some find that relief in self-harm.
In radically-open DBT (RO-DBT) there is a dialectic balance between under-control and over-control. Under-control involves impulsivity and a dramatic/erratic presentation. Over-control, on the other hand, involves a lot of hypervigilance, black/white (rule-governed) thinking, strong conscientiousness, and control over self.
The person might not come across as openly suffering at first, but inside, the story could be completely different. Overcontrolled individuals have high rates of suicide (Omalan and Lynch, 2018). RO-DBT characterizes most autistics as overcontrolled (Lynch, 2020).
While stereotypically, self-harm has been associated with styles of under-control, such as that often exhibited in borderline personality disorder, RO-DBT points out that self-harm is also common in over-control. For people with a style of over-control, self-harm might represent what RO-DBT calls an "emotion leak," a space wherein after pushing away significant emotion and trying to control everything, the walls break down. Emotion leaks might describe why some autistics may be more apt to self-harm behaviors such as headbanging at the moment as opposed to ones that require gathering tools like cutting.
Still, it should be noted that many autistic people do engage in more traditional forms of self-harm as well. In RO-DBT, it is noted that overcontrolled individuals may be less likely to disclose their self-harm and often take steps to hide it, showing the compounded shame that self-harm can ignite.
Loneliness is also a common experience for autistic individuals, which strongly affects mental health. A study of 71 autistic adults found that loneliness was associated with both depression and self-harm (Hedley et al., 2018).
Another qualitative study of autistic adults found that while receiving quality mental health care led to positive outcomes, focus groups indicated that accessing such care was often difficult. They also cited a lack of understanding among mental health professionals of autism-specific needs (Camm-Crosbie et al., 2019).
Navigating a world set up for neurotypical brains creates specific needs for autistic clients in mental health treatment. Yet mental health interventions are not always naturally neurodiversity-affirming.
For example, when a neurotypical client avoids eye contact in a session, this may be an indication of anxiety or withdrawal that prompts a therapist to inquire further. On the contrary, many autistic individuals find it easier to focus when not making eye contact; the same may require nothing more from the therapist than to accept the communication difference without demanding eye contact. This is why there is a strong need for neurodiversity-affirming care.
Addressing self-harm in autism is tricky and may involve multiple layers. Most critically, when individuals' needs are heard, and they feel safe to be themselves, self-esteem rises, and the level of risk decreases. Such trends emphasize the need for intervention on a community level through education.
Increasing acceptance of autism and creating communities that are more friendly to the needs of autistic people may help to combat isolation and create spaces of safety. Celebration of neurodiversity to improve the inclusion of neurodivergent people and provision of support in job and education settings to decrease overwhelming demands while giving individuals a chance to show their best in the workplace/school are relevant steps.
Additional prevention measures may include improving access to quality and neurodiversity-affirming autism assessments earlier. While autism onsets close to birth, many do not receive the diagnosis until late childhood, adolescence, or adulthood.
Without the diagnosis of "autism," many youth experience misunderstanding, and exclusion. The weight of neurotypical expectations and pressure to mask can press harder. A study of 396 autistic children found that youth who received an autism diagnosis after the age of 11 were significantly more likely to engage in self-harm (Hosozawa et al., 2021).
Still, psychological assessments traditionally used to diagnose autism are not always covered by health insurance, making access difficult for families without significant means. Even when assessments are accessible, assessment and diagnosis are not always neurodiversity-affirming or precise, particularly for women and those without a comorbid intellectual disability.
For autistic individuals who are engaged in self-harm, there may be an immediate need to readjust stresses and for advocacy. Psychotherapy can also help. Research has shown promising results for the use of dialectical behavioral therapy in autistic individuals struggling with self-harm (Phillips et al., 2024). Approaches such as RO-DBT, which address the fatalistic mind states that often underlie self-harm in autism; acceptance and commitment therapy, which assists with navigating intense emotional states while moving toward one's goals; and/or approaches bent toward self-compassion are just a few that may be effective.
Self-harm is common in autism, but it doesn't have to be. By addressing the systemic problems that lead to self-harm while also providing necessary mental health support, we can address this under-discussed challenge.
References
Akram, B., Batool, M., Rafi, Z., & Akram, A. (2017). Prevalence and predictors of non-suicidal self-injury among children with autism spectrum disorder. Pakistan Journal of Medical Sciences, 33(5), 1225.
Camm-Crosbie, L., Bradley, L., Shaw, R., Baron-Cohen, S., & Cassidy, S. (2019). ‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality. Autism, 23(6), 1431-1441.
Hedley, D., Uljarević, M., Wilmot, M., Richdale, A., & Dissanayake, C. (2018). Understanding depression and thoughts of self-harm in autism: A potential mechanism involving loneliness. Research in Autism Spectrum Disorders, 46, 1-7.
Hosozawa, M., Sacker, A., & Cable, N. (2021). Timing of diagnosis, depression and self-harm in adolescents with autism spectrum disorder. Autism, 25(1), 70-78.
Licence, L., Oliver, C., Moss, J., & Richards, C. (2020). Prevalence and risk-markers of self-harm in autistic children and adults. Journal of autism and developmental disorders, 50(10), 3561-3574.
Lynch, T. (2020). Radically Open Dialectical Behavioral Therapy: Theory and Practice for Treating Disorders of Overcontrol. New Harbinger
Nguyen, W., Ownsworth, T., Nicol, C., & Zimmerman, D. (2020). How I see and feel about myself: Domain-specific self-concept and self-esteem in autistic adults. Frontiers in Psychology, 11, 913.
O’Mahen, H., & Lynch, T. R. (2018). How to differentiate overcontrol from undercontrol: findings from the RefraMED study and guidelines from clinical practice. RADICALLY OPEN, 41(3), 132.
Phillips, M. D., Parham, R., Hunt, K., & Camp, J. (2024). Dialectical behaviour therapy outcomes for adolescents with autism spectrum conditions compared to those without: findings from a seven-year service evaluation. Advances in Autism.
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