Dr Freya Rumball is an autism researcher at King’s College London and a highly specialist clinical psychologist working within Oxleas NHS Foundation Trust Adult Autism Assessment Service and Autism Partnership Programme. Here Dr Rumball discusses research exploring autistic people’s experience of trauma and post-traumatic stress disorder, and what support may help them.

Post-traumatic stress disorder (PTSD) is a mental health condition that can happen after experiencing a traumatic life event. Symptoms of PTSD include re-experiencing the traumatic event, avoiding triggers related to the event, negative changes in mood and thinking, and hyperarousal and reactivity (DSM-5, APA, 2013).

Research indicates that autistic people are more likely to report symptoms of PTSD. Although research has yet to establish clear prevalence rates, the rates of probable PTSD in autistic people (32-45%) are higher than those in the general population (4-4.5%) (Rumball et al. 2020; Rumball et al. 2021; Haruvi-Lamdan et al. 2020).

Increased risk?

The risk of PTSD is higher for groups who are more likely to be exposed to traumatic events. Research indicates that autistic people may be more likely to experience traumatic life events, particularly interpersonal traumas such as bullying and physical and sexual abuse. In the general population exposure to interpersonal traumas and a lack of social support increases the risk of PTSD (Brewin et al. 2000). 

Our own research (Rumball et al. 2020) and Kerns et al. (2022) suggest a number of other events that autistic people found traumatic: 

• abandonment by/loss of a loved one (for example a family member, pet or support staff)
• sensory experiences (for example fire alarms)
• transitions and change (for example school transitions, routine changes with the seasons, unpredictability in day to day life)
• social difficulties and confusion (for example difficulties interpreting social cues, misunderstandings and conflicts) 
• events related to one’s own mental health difficulties (for example psychotic experiences).

Autistic people may also be more likely to find these experiences traumatic due to autistic characteristics such as:

• sensory sensitivities
• communication and social interaction differences
• distress around changes to routines
• distress if prevented from taking part in repetitive and restricted behaviours such as stimming. 

Some theories suggest that other factors associated with being autistic, may mean an increased risk of developing or maintaining PTSD symptoms (Kerns et al 2015; Hoover 2015; Haruvi-Lamdan et al 2018), such as: 

• neurological and genetic factors
• detailed focused processing (in other words a tendency to focus on the details of a situation)
• increased rumination (unable to stop thinking about negative feelings and thoughts), inflexible thinking and avoidance
• emotion regulation difficulties.

Treating PTSD in autistic people

Recent findings from our research group ReSpect Lab, from a qualitative study lead by Dr Anneka Kumar (King’s College London), explored the experience of trauma and PTSD symptoms for autistic adults. Many of the symptoms were similar to the general population but some other themes did emerge that may impact on treatment. 

1. Individuals described difficulties separating which parts of their identity were related to underlying neurodiversity and which were related to their later trauma experiences. Many individuals developed an interest in trying to understand their traumatic experience, and for many this developed into an intense interest. 

2. Some individuals shared that they found it difficult to understand or explain their feelings which made it hard to communicate and talk about their experiences. Others shared that when they did discuss the impact of the trauma with others, it was minimised or not taken seriously.

“I have brought up trauma with some of the recent therapists, psychiatrists and psychologists that I’ve seen, and at best they’ve said ‘maybe’ and then moved on to talking about something else.”

3. Worryingly, many autistic people in this research described not being able to access appropriate psychological therapy within the NHS or charitable sectors. Instead they had to rely on paid help from the private sector. There was tendency to only offer medication rather than therapeutic interventions for autistic people with PTSD, with clinical misinformation that therapy could not be effective. 

A lack of research means we do not know how effective current PTSD treatments are for autistic people. In the meantime, common practice is to follow the general population recommendations for PTSD (NICE, 2018). These recommended treatments should be appropriately adapted for autistic people and their individual needs in areas such as communication, language, processing, sensory and intense interests (see Peterson et al. 2019 for more information). 

Autistic people may require:

• a greater number of sessions 
• a longer or shorter duration to each session 
• regular breaks.

It may also be beneficial to use a person’s intense interests within the therapy wherever possible. For example, Gerhardt and Smith (2020) describe using an autistic boy’s interest in Minecraft as a therapeutic tool, to create a book about his difficult life experiences and a hopeful future, helping him re-process the trauma narrative. 

Before beginning trauma-focused therapy it is important to stabilise the individual with emotional coping strategies and creating feelings of safety. Support strategies that have been found to be helpful in the general population include: 

• mindfulness and grounding in the present moment
• creating feelings of safety (for example an object/picture that symbolises safety)
• sensory soothing activities (for example essential oils, candles)
• relaxation exercises such as yoga/Pilates, exercise or dance
• reengaging with life (for example routines, volunteering, employment, relationships).

Dr Kumar’s research with autistic adults describes activities that they found helpful following trauma, and in the recovery from PTSD. Some used exercise and yoga as ways to focus the brain on things other than trauma.

“Exercise, that is what saved me I think….it helped me with the stress and helped me with the anxiety on a physical level but also it was the only space I had to be alone”.

Others described using music and music therapy, and engaging with nature and animals.