Trauma exposure and post‐traumatic stress disorder in people with intellectual disabilities: A Delphi expert rating

Abstract

Background There is a lack of research on trauma in people with intellectual disabilities. This study assessed expert consensus on the traumatic potential of a broader range of adverse life events, and differences in symptom manifestation and behavioural symptom equivalents of post‐traumatic stress disorder (PTSD) symptoms. Method The present authors conducted a three‐step Delphi survey using a mixed‐methods design. Twenty‐nine expert raters participated in the survey, and 16 persisted to the final round. Consensus was calculated using the interquartile range. Results Traumatic potential was attributed to adverse life events, particularly revolving around sexuality and autonomy. DSM‐5 symptoms of PTSD were rated as partially adequate, with behavioural symptom expression being the main difference to the general population. Conclusion The range of traumatic events should be broadened for people with intellectual disabilities. A specific subset of events need to be defined in future research. Detection of PTSD depends upon determining specific symptom correlates of challenging behaviour.

“If we do not look for it, we do not see it”: Clinicians' experiences and understanding of identifying post‐traumatic stress disorder in adults with autism and intellectual disability

“…Trauma‐related symptoms were described following events that would rarely be considered traumatic in the general population, suggesting that a broader range of events need to be considered when assessing PTSD and trauma‐related symptoms in individuals with ASD and ID. This is in line with previous suggestions that ASD increases vulnerability to PTSD (Brewin et al, 2019; Kerns et al, 2015; Peterson et al, 2019; Rumball, 2019) and that individuals with ID may develop PTSD following less severe events than those included in the DSM 5 criterion A (American Psychiatric Association, 2013; McCarthy et al, 2017; Rittmannsberger et al, 2019). Examples provided by the informants suggest that this may be due to, for instance, sensory processing issues (Brewin et al, 2019), or because individuals lack access to information others take for granted.…”

“…Expression of psychiatric disorder in general may be affected by both ASD and ID (Bakken et al, 2016; Helverschou et al, 2011), and assessments may rely on clinicians' or caregivers' recognition of behavioural expressions of psychiatric symptoms, particularly in individuals with more severe levels of ID (Fletcher, Barnhill, & Cooper, 2017). While current knowledge regarding behavioural expressions of PTSD symptoms in individuals with ASD and ID is limited (Kildahl et al, 2019; Rittmannsberger, Kocman, Weber, & Lueger‐Schuster, 2019), it has been suggested that presentation of PTSD in more severe levels of ID may align with symptom presentation in typically developing children (McCarthy, 2001; Mevissen, Didden, & de Jongh, 2016), including behavioural acting out of traumatic experiences and increased likelihood of disorganized or agitated behaviours (McCarthy et al, 2017). Moreover, individuals with ASD may display symptoms of psychiatric disorder in idiosyncratic or atypical ways, such as changes to the quality, frequency or intensity of repetitive behaviours (Rosen, Mazefsky, Vasa, & Lerner, 2018), but knowledge is sparse with regards to PTSD (Kildahl et al, 2019).…”

“Driven and Tense, Stressed Out and Anxious”: Clinicians’ Perceptions of Post-Traumatic Stress Disorder Symptom Expressions in Adults with Autism and Intellectual Disability

“…Knowledge regarding individuals' trauma experiences and interpretation of behavior were seen as important to identify the more PTSDspecific symptoms reexperiencing and avoidance, underlining the need for psychiatric assessment in this population to be trauma sensitive, thorough, and multi-dimensional. Challenges recognizing and identifying reexperiencing and avoidance in individuals with ASD and ID have previously been suggested to relate to these symptoms' intra-psychic nature and patients' lack of verbal abilities (Kildahl et al, 2019;Rittmannsberger et al, 2019). Current findings indicate that this may only be a partial explanation, as development of reexperiencing and avoidance may follow different trajectories in some individuals with ASD and ID and thus be expressed in a wider range of ways.…”

Applicability of the post‐traumatic stress disorder gate criterion in people with mild to moderate intellectual disabilities: Do additional adverse events impact current symptoms of Post Traumatic Stress Disorder in people with intellectual disabilities?

“…Behavioural symptoms may occur as an expression of or reaction to intrusion symptoms, or as a response to an inability to avoid triggers due to a lack of autonomy (Wigham & Emerson, 2015). People with intellectual disabilities might lack the skills to understand these symptoms and therefore have trouble verbalizing them or recognizing them from an interviewer's description (Rittmannsberger et al, 2019). The current possibilities for verbal self‐report assessment seem to be insufficient to gain adequate insight into these symptoms in people with intellectual disabilities.…”

“…Indeed, this claim is supported by previous studies literature: experienced professionals and practitioners suggest that events going beyond the definition of the gate criterion, such as parental bereavement and having children removed, were common sources of trauma (Mitchell & Clegg, 2005). Moreover, expert raters considered such events as potentially traumatic for people with intellectual disabilities, especially events revolving around the broader themes of sexuality and autonomy (Rittmannsberger, Kocman, Weber, & Lueger‐Schuster, 2019).…”