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Utility of Complex Trauma Questionnaires for Adults on the Autism Spectrum with Mild Intellectual Disability: A Systematic Review

Lookup NU author(s): Dr Iain McKinnon, Dr Sarah Wigham, Dr Raghu Lingam, Professor Jacqueline Rodgers



This is the final published version of a conference proceedings (inc. abstract) that has been published in its final definitive form by INSAR, 2021.

For re-use rights please refer to the publisher's terms and conditions.


Background Identification of trauma in people on the autism spectrum with intellectual disability is difficult as there a few trauma assessment tools available. Trauma questionnaires can support clinical case recognition, information gathering and formulation, and facilitate research evaluations of interventions for trauma-related mental health conditions during clinical trials. However, research suggests existing trauma questionnaires may not capture all symptoms of trauma relevant to autistic people with intellectual disabilities. Research suggests some trauma symptoms e.g. avoidance may be difficult to identify in people on the autism spectrum with intellectual disability while emotion dysregulation and interpersonal difficulties may be useful indicators. Objectives The aims of this two–stage review were to (i) identify questionnaires used in neuro-typical complex trauma intervention evaluations to measure emotion dysregulation and interpersonal difficulties and (ii) evaluate their psychometric properties. Finally, to discuss the potential utility of the questionnaires for people on the autism spectrum with mild intellectual disability and co-occurring trauma-related mental health conditions. Methods In Stage 1 four electronic databases (Medline, Cinahl, Embase, PsychInfo) were searched for neuro-typical complex trauma intervention studies. Second reviewers completed 20% of article sifting. In Stage 2 we used a formal search filter in Embase to identify articles evaluating the psychometric properties of the questionnaires used to measure emotion dysregulation and interpersonal difficulties in Stage 1 studies. The quality of the psychometric evidence for each measure was then assessed using the COSMIN (Consensus based Standards for the selection of health based Measurement Instruments) risk of bias checklist and this information was synthesized narratively. Results Twenty-one complex trauma intervention studies were identified in Stage 1 and they utilised four measures of emotion dysregulation and interpersonal difficulties. These measures included the Emotion Regulation Questionnaire, the Difficulties in Emotion Regulation Scale, the Inventory of Interpersonal Problems and the Inventory of Altered Self-Capacities. Thirty-five articles on their psychometric properties were identified during Stage 2 of the review. While unique qualities were identified for all four measures, overall the findings suggested the strongest psychometric evidence was for the Emotion Regulation Questionnaire (ERQ), and the Difficulties in Emotion Regulation Scale (DERS). While evaluations of content validity were scarce, several international versions of the ERQ and the DERS were evaluated and found to have good internal reliability, structural validity and construct validity across a range of clinical and neuro-typical groups. Conclusions Reviewing the psychometric properties of questionnaires used in the neuro-typical complex trauma research is an important preliminary stage in a process of exploring their utility and appropriateness for autistic people with mild intellectual disability. Evaluation on content validity and acceptability of the ERQ and DERS for people on the autism spectrum with mild intellectual disability will be useful next steps to inform future use and/or adaptation in the context of trauma-related mental health conditions.

Publication metadata

Author(s): McKinnon I, Wigham S, Reid K, Milton D, Lingam R, Rodgers J

Publication type: Conference Proceedings (inc. Abstract)

Publication status: Published

Conference Name: International Society for Autism Research Annual Meeting (INSAR)

Year of Conference: 2021

Pages: 705-705

Online publication date: 03/05/2021

Acceptance date: 05/03/2021

Date deposited: 14/07/2021

Publisher: INSAR