In pop culture we generally associate self-harm with severe mental illness and/or attention seeking behaviour. However, there are other factors that can influence a person to harm themselves, such as low self-esteem or a need to connect with the body on a physical, sensory level. Approximately fifty percent of people with autism have self-harmed at some point in their lives. This percentage is significantly higher than the percentage of neurotypicals (non autistics) that engage in self-harm, hence the need to examine autism and self-harm side by side.
But what do I mean by self-harm? How does this behaviour differ in people with autism, and why are we so much more likely to engage in it?
Self-harm on the autism spectrum can range from children with classical autism biting and scratching themselves when in distress, to high functioning autistic’s cutting themselves and hiding the wounds under clothing. The latter is more problematic because people generally have enough social awareness to effectively conceal what they are doing from others, meaning the problem continues to develop without knowledge or support. I cut myself several times a week for roughly a year before anyone knew. (This behaviour continued on off for two more years until I received adequate support for my Asperger’s Syndrome).
Here are some ways a person with autism might harm themselves:
- Hitting, biting, nipping and scratching
- Pulling out hairs
- Cutting or scraping
- Carving names into skin
- Burning skin
- Pricking skin with pins or sewing needles
- Abusing food and/or alcohol
I often observe the autistic children I work with hitting or biting themselves when in distress. This distress seems to come from an unmet need to control their routine or environment. For example: one child became increasingly distressed when his parent was late to collect him and bit down on his hand several times to soothe himself. Another child hit himself over the head repeatedly when someone took his toy away. In both cases the child could not control their environment or the situation they were in, which is likely to cause a huge amount of anxiety for someone with autism.
However, an autistic child could just as easily be biting or hitting themselves because they’re craving deep touch stimulation. I first started cutting when severely under-sensitive to touch and found the sensation of metal or glass breaking my skin very soothing, like a firm hand on the shoulder. I now achieve deep touch stimulation by running my hands across rough stone walls, the friction creating a similar sensation to the skin being cut. In some cases there is a fine line between self-harm and sensory stimulation.
Etching simple shapes or a lovers name into the skin seems to be more common in girls with high functioning autism. Sarah Hendrckx reflects on her history of self-harm:
‘As a teenager, I cut myself, a lot… I also etched boy’s names and initials into my hands. I can still see faint scars now. I spoke about this at a conference for women with autism and afterwards a woman came up to me and asked to see my scars. I showed her and then she showed me hers- almost invisible names on her hands in the same place (at the base of the thumb) that mine were.’ (Hendrickx, Women and Girls With Autism Spectrum Disorder, p. 207).
In my opinion teenagers with high functioning autism or Asperger’s experience romantic feels far more intensely than neurotypicals, and may be unable to process these feelings rationally, leaving self-harm as the only outlet. Hendrickx describes her own emotions as ‘overwhelming physical sensations that welled up inside my body like a volcano with no vent, no outlet for release’ (Hendrickx, Women and Girls With Autism Spectrum Disorder, p. 207).
The abuse of food and alcohol may seem like a less obvious form of self-harm. However, these behaviours can be just as destructive as cutting, biting or hitting. Alcohol abuse and binge eating were not a problem for me until I gave up cutting myself. At this point I weighed eight stone. I now weigh ten and a half stone. I started to binge eat regularly during my third year of university and would drink a bottle of wine a night, every night to deal with a combination of loneliness and stress. Nick Dubin, author of Asperger’s Syndrome and Anxiety, has reported weight gain and binge eating during times of stress. While Sarah Hendrickx suggests that in autistic individuals ‘alcohol and drugs may fulfil a similar function [to self-harm] by blocking out emotional confusion and the feeling of being overwhelmed’ (Hendrickx, Women and Girls With Autism Spectrum Disorder, p. 208).
In hindsight it’s easy to see these coping mechanisms replaced cutting for. While more culturally acceptable, long term binge eating and heavy drinking are just as harmful to the body as cutting, if not more so. The key difference is the damage caused by binge eating and drinking is located inside the body. Unlike the open wounds I used to inflict upon myself, this damage is completely invisible, and therefore harder to find appropriate support for.
In teenagers with Asperger’s Syndrome or high functioning autism, self-harm can be caused by mental health issues (such as depression and anxiety) or low self-esteem. Approximately fifty percent of women with autism have experienced depression, anxiety disorder, or had suicidal thoughts, including myself. Cognitive behavioural therapy, counselling and other forms of therapy can help with these issues. However, a big mistake sometimes made by mental health practitioners is treating the mental health issue while ignoring the autism. (For example: when I was sixteen the emotional reasons I had for self-harming were addressed during therapy, but the sensory reasons were not, which meant this destructive behaviour soon started up again).
As just one percent of the world’s population is autistic. It’s unsurprising people with autism can end up feeling isolated, misunderstood and excluded from the world. These feelings quickly lead to depression. Indeed, Hendrickx suggests that for some women on the autism spectrum, ‘their low mood is simply a consequence of their limited social acceptance and daily challenges: they [are] unable to differentiate their depression from their autism’ (Hendrickx, Women and Girls With Autism Spectrum Disorder, p. 204).
She also highlights how ‘anxiety is widely recognised as being a normal part of life for many people on the autism spectrum’ (Hendrickx, Women and Girls With Autism Spectrum Disorder, p. 205). In both the examples I used of autistic children self-harming, the child was experiencing high levels of anxiety. The reasons for their anxiety (the pathological need for routine and a lack of control over sensory environments) were directly linked to their autism. My own anxiety is usually the result of sensory issues. I’ve had plenty of panic attacks simply because my environment was too noisy. Bright lights, eye contact and unexpected physical contact are also triggers for anxiety.
It’s possible to be autistic and have excellent mental health. However, it’s clear any mental health issues someone on the spectrum does experience should be examined in the context of their autism, as should self-harm.
So how can we support a child or adult with autism in giving up self-harm?
There’s no one size fits all solution, but the worst strategy anyone could employ would be to say ‘stop self-harming!’ and leave it at that. Instead, try to discover and remove any triggers you think may be causing an autistic person to self-harm, such as social/academic pressure or unnecessary sensory stimulation. If they are self-harming because they crave the sensation it gives them, try to find a safer alternative that offers deep pressure, such as a squeeze machine. Antipsychotic medications like quetiapine or risperidone can be used to reduce high levels of anxiety. However, the person taking them MUST give their full consent, and their usage should only continue if the benefits of the drugs outweigh any negative side effects.
Earlier I mentioned isolation and low self-esteem as the cause of self-harm in some people with high functioning autism. In this case, cognitive behavioural therapy could be useful. It would also be helpful to reduce the social expectations any friends, family and work colleagues may have on that individual. However, low self-esteem often causes people to place unrealistic expectations on themselves, and this desperate need to prove oneself needs to be tackled too.
Many autistic people report high levels of ‘overwhelment’ right before cutting. A constructive way to help them stop would be to tackle the feeling of overwhelment itself, rather than the destructive behaviour it causes.
It’s not easy to stop self-harming. I haven’t cut myself in over three years, but the urge to do so is still part of my daily life. Hendrickx admits that ‘Even now in my 40s, the urge to cut myself is strong at times when I feel overwhelmed… but my ability to understand the consequences to myself and others of cutting myself has increased’ (Hendrickx, Women and Girls With Autism Spectrum Disorder, p. 207). When I started self-harming I did not have the empathy or theory of mind to predict how it would upset my family. But I do now, and sometimes that’s all that stops me from cutting again. Perhaps the best thing you can do for a person self-harming is remind them how much they mean to you, and watching them hurt themselves is more painful than any self-inflicted bite, scratch or cut.