By Sophie Longley, MSc Experimental Psychology student
I was diagnosed with autism last year, at 28 years old. Strangely, the diagnosis was not a surprise. In fact, it finally provided answers for why I felt so out of place in the world and why I would get so incredibly overwhelmed by things that others simply took in their stride. It also explained why I had trouble with maintaining friendships, why I tried so hard to fit in with everyone else to the point of exhaustion and why it felt like my environment was too loud, too bright, too much.
What I’ve just described are some of the many distressing experiences that autistic people encounter every day.
Autism research has come a long way in identifying our neurological differences compared to the non-autistic population. However, to truly understand our autistic experiences, research needs to go beyond our neurology towards investigating how we experience the world and in turn, how we are treated by others because of these differences, which as research suggests, results in lasting emotional harm and trauma.
This autism awareness week, I want to draw attention to research that I am conducting with my brilliant supervisor, Dr. Sophie Anns, on how late-diagnosed autistic women make sense of traumatic experiences. Using Interpretative Phenomenological Analysis (IPA), we will interview participants to identify the types of traumas they have each experienced and explore how getting an autism diagnosis later in life has affected how they make sense of these traumatic experiences. We’ve chosen IPA over other methodologies as we are not looking to generalise our findings across the entire autistic population (gasp!). Instead, we think it’s important to focus on how our autistic participants make sense of their own individual traumatic experiences since current literature highlights that these experiences are incredibly diverse across the autistic population.
To date, there is little qualitative research highlighting how autistic adults, particularly autistic women, experience trauma despite quantitative studies showing the prevalence of probable PTSD among the autistic population (Haruvi-Lamdan et al., 2020; Rumball et al., 2021). For clinicians, autism professionals and wider society to get a better grasp of what autistic people deem traumatic, not just how many of us may experience trauma, there is a need for further qualitative research on this topic. This will allow autistic people to describe, in-depth these experiences that may be perceived as not traumatic by others.
Although autistic people experience higher rates of trauma compared to the non-autistic population (these rates are higher for autistic women than autistic men), autistic people overall are less likely to receive a diagnosis for PTSD compared to non-autistic people (Rumball, 2021). This is partly due to these traumatic experiences being nuanced and not ‘traumatic enough’ to meet the PTSD diagnostic criteria, despite many autistic people reporting heightened arousal and intense anxiety following a traumatising experience – commonly associated with a clinical diagnosis of PTSD (Brewin et al., 2009)
Only until recently, research has identified a broad range of traumatic events experienced by autistic people, which may not be widely understood by clinicians. For instance, a recent study by Kerns (2022) found several sources of trauma among autistic adults such as social marginalisation, social exclusion at school and in the workplace, sensory trauma, and difficulties in seeking institutional support. Additionally, other research has identified difficulties with professional interactions and social relationships, offhand comments, challenges in finding supportive networks and repeated instances of stigma and discrimination (Gates, 2019; Sweeney, 2016; Botha & Frost, 2020) as sources of trauma. Interestingly, even the autism diagnostic process itself was cited as a traumatic event, particularly for those diagnosed in adulthood (Crane et al., 2018).
Likewise, Fulton, Reardon & Richardson et al., (2020) found that commonplace activities such as showering, brushing teeth, getting dressed, having breakfast or being in the company of others can be physically or emotionally harmful to autistic people, due to the sensory overwhelm often associated with these situations. The reason why these situations are deemed traumatic for autistic people and perhaps not others, is two-fold: not only do autistic people have a heighted sense of vigilance and hyperarousal to potential harm and are therefore primed to look out for traumatising sensory information (Fulton et al., 2020), but misunderstandings from others who label these events as not traumatic, lead to further distress (Fulton, et al., 2020). This brings to light a broad range of traumatic events that are not yet recognised by clinical measures for PTSD but are nonetheless still valid traumatic experiences for autistic people and should be taken seriously.
Stressful events not involving an immediate threat to life or physical injury such as the ones listed above are not considered trauma in the clinical sense (Paiet al., 2017) and therefore fall under the DSM-5 non-Criterion A category for PTSD. It’s the non-Criterion A trauma that our research is particularly interested in because unfortunately, no matter how many of these traumas autistic people experience, they may not be able to receive a clinical diagnosis for PTSD as such events are perceived as ‘less intense’ or even ‘harmless’. So, when assessing potential trauma among autistic people, it’s important to understand that what may be perceived as mildly distressing for most of the population, might be extremely traumatic for autistic people.
We hope that our research, among other emerging studies in this field, could potentially offer a case to revise the current clinical tools used to diagnose PTSD in autistic adults. But, with such a broad spectrum of traumatic experiences, the challenge for clinicians will be deciding which ones warrant a PTSD diagnosis. If anything, we hope our research will help to validate the traumatic experiences of our participants and raise awareness of different situations that some autistic people might find traumatic.
If you would like to find out more about this study, email Sophie Longley firstname.lastname@example.org or Dr. Sophie Anns email@example.com. They will be looking to recruit participants in April, following ethical approval.