Paper: "A ‘choice’, an ‘addiction’, a way ‘out of the lost’:
exploring self-injury in autistic people
without intellectual disability"
This paper was published in 2019, in the journal Molecular Autism.
You can click HERE to download a PDF of the paper.
Keep reading to see a plain English summary, or you can watch my explanatory video!
Why is this an important issue?
Non-suicidal self-injury (NSSI) is when people deliberately hurt themselves for the purpose of causing themselves pain or damaging their body. This behaviour is also known as self-harm or self-injury, and in the general population, it is associated with great distress and is a feature of many mental illnesses. Although people who engage in NSSI are not trying to end their own lives, we know that they seem more likely than non-self-harmers to attempt suicide at a later date.
When this study was planned and conducted (2016-2018), very little was known about NSSI in autistic people. A lot of studies had looked at self-injury as just one kind of repetitive behaviour, often in individuals who were minimally verbal or had severe communication difficulties. These studies did not think about self-injury in the light of NSSI, i.e. as something that might occur in autistic adults without severe communication / intellectual disabilities and which might occur for similar reasons as in the general population. A single study suggested that autistic people without intellectual disabilities did indeed engage in self-injury which fitted the description of NSSI, as opposed to simply a repetitive behaviour. Still, very little was known about NSSI as it occurs in autistic people.
Here is a short video summary. You can open it up to large screen, and turn captions on and off by clicking the 'CC' button.
What was the purpose of this study, and what did the researchers do?
We aimed to find out more about NSSI in autistic adults without intellectual disabilities. Especially, we wanted to investigate what characteristics mark out autistic people who are most likely to engage in NSSI. We also wanted to understand more about what kind of NSSI behaviours autistic people engaged in, what purpose these behaviours seemed to play in their lives, and how they felt about their self-injury.
We asked 103 autistic adults to complete an online survey about self-injurious behaviour. In the whole group, only 27 participants had never self-harmed. We classed them as ‘non-self-harmers’. Forty-nine participants had engaged in self-injury in the past two years, so we classed them as ‘current self-harmers’. The remainder of the group (27) had a history of self-injury but hadn’t hurt themselves in the past two years, so we classed them as ‘historic self-harmers’.
There were so many results (findings) in this study, that we've split them into three parts!
Results Part 1: Describing self-injury
Self-harming participants reported beginning to self-injure in adolescence. The reasons they reported for self-injuring, the ways that they hurt themselves and the body areas they targeted, were very similar to what we know about non-autistic people who self-injure.
The most common reason that people self-injured was to feel something when they were experiencing a state of emotional numbness. After that, people most commonly reported self-injuring in order to calm down from high-intensity emotions like anxiety, anger or agitation. Other reasons people self-injured included self-injuring to punish themselves, or to deter themselves from more dangerous behaviours; to express their feelings when they were unable to find words; and to generate sensory experiences.
The images below show how our participants who engaged in NSSI felt about it.
In the first image, participants rated how much they agreed with the statement, "The fact that I intentionally hurt myself is a problem in my life":
In the second, they explained what aspects of their life were affected by NSSI.
The image below shows responses to a question about the reasons people engaged in NSSI. The percentages show how many participants reported engaging in NSSI for that reason:
To feel something (30%)
To calm down high-intensity emotions (27%)
To punish myself or avoid doing something more dangerous (19%)
As a means of communicating (4%)
Other reasons (3%)
Results Part 2: Predicting self-injury
We found that certain features differed between participants who had self-harmed (current or historic self-harmers) and those who had not. Participants in either of the self-harming groups were more likely to have a mental health condition and to be taking medication for it; they were also more depressed and more anxious than the non-self-harming group at the time of the study.
Alexithymia, a difficulty identifying your emotions and being able to describe them, was greatest in current self-harmers, slightly lower in historic self-harmers, and lowest in non-self-harmers. People with high levels of alexithymia seemed especially likely to engage in self-injury in order to calm down from high-intensity emotions and to communicate their feelings when they could not find words. This makes sense - people with alexithymia struggle to control their emotions, and being unable to describe your emotions is a key feature of alexithymia.
Sensory sensitivity was another variable which was highest in current self-harmers, intermediate in historic self-harmers, and lowest in non-self-harmers.
Results Part 3: How did people feel about their self-injury?
Some autistic people reported being very distressed about their self-injury. Often, they reported feeling like it was an addiction, something out of their control and ‘a sign of ‘how unwell [they] were’. Others did not feel that their self-injury was a problem in their life, but rather a coping behaviour that they could choose to use when desired.
Things that had helped autistic people reduce self-injury were:
gaining more awareness of their emotions and learning ways to manage them safely.
understanding their sensory triggers and needs.
receiving help with any mental illnesses.
for some, learning about their autism had helped their mental state.
Some participants mentioned forms of psychological therapy that had been helpful, while others pointed out that their encounters with psychotherapists had not always been helpful.
Participants emphasised how important it was for loved ones to respond calmly, non-judgementally and compassionately, keeping their own emotions in check and making sure the autistic person felt loved and supported. They also said how important it was for loved ones to try to understand the reasons behind self-injury, which would differ across individuals. Participants suggested that NSSI (self-harm) always served some kind of purpose in a person’s life, even though they may not fully be aware of it. They said how important it was to dispel negative assumptions and stigma about NSSI, such as the idea that it is an attention-seeking behaviour.
What are potential weaknesses in the study?
Because this study looked at a snapshot of participants’ current states, we cannot be sure if characteristics like being depressed or having high alexithymia are risk factors for self-injury, or may have occurred or increased as a consequence of self-injury.
We could not compare our autistic participants with non-autistic individuals, so cannot say if any of the features of NSSI in our sample were specific to autistic people who self-injure or true to anyone who self-injures. Our sample was too small to really tease apart the effects of individual variables in predicting self-injury.
Finally, our sample was not representative of autistic people with intellectual disabilities, non-binary and trans autistic people, or autistic people of colour.
How will these findings help autistic adults now or in the future?
NSSI is extremely important to study in autistic people, as for some people, it is a distressing and disfiguring behaviour which they feel is out of control. However, it is also important to study NSSI because, in the general population at least, NSSI seems somehow related to later suicide.
These findings indicate that NSSI (self-injury/self-harm) could be quite common in autistic people. NSSI in autistic people seems to resemble NSSI in non-autistic people in some important ways, including age at onset, reasons for self-injury, and methods used for self-harming. Certain characteristics are indicated as potential risk factors for engaging in NSSI, like depression and anxiety, alexithymia, and sensory sensitivity. Our participants also gave us an insight into their feelings about self-injury, what things might help them, and how loved ones could best support them.
Thank you for reading!
If you found this interesting, you may like to read:
If you are struggling with self-injury or your mental health, please look at the resources page in case there is something helpful there for you.