Measurement properties of tools used to assess depression in adults with and without autism spectrum conditions: A systematic review.
Standard depression questionnaires lack autism validation, so interpret scores cautiously and seek extra information.
01Research in Context
What this study did
Burrows et al. (2018) hunted for every paper that checked if depression questionnaires work for autistic adults.
They screened the BDI-II, PHQ-9 and other common scales. They asked: do these tools really measure depression in people with autism, or do they mistake autism traits for mood symptoms?
What they found
Almost no study had run full validity tests in an autistic sample. The BDI-II and PHQ-9 are solid for the general public, but we lack proof they mean the same thing when an autistic adult fills them out.
How this fits with other research
Lerner et al. (2012) and Bitsika et al. (2016) already showed that parents and teachers score depression differently in autistic boys. Burrows et al. (2018) widens the worry to adults and to self-report forms.
Arnold et al. (2023) tried to build a new “autistic burnout” scale and hit the same wall: items overlap with depression questions and validity is shaky. The pattern is clear—our tools need autism-specific checks.
Cummings et al. (2024) now calls for new patient-reported outcome measures that include autistic voices from the start. Burrows et al. (2018) is the baseline that makes this call urgent.
Why it matters
If you screen an autistic adult today, you are probably using a scale that was never tested on them. Treat totals as clues, not verdicts. Follow up with open questions, caregiver input, and watch for items that may reflect sensory overload or social difference rather than mood. Push for formal adaptation studies in your clinic or collaborate on one—good data starts with good measurement.
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02At a glance
03Original abstract
UNLABELLED: Depression is the most commonly experienced mental health condition in adults with autism spectrum conditions (ASC). However, it is unclear what tools are currently being used to assess depression in ASC, or whether tools need to be adapted for this group. This systematic review therefore aimed to identify tools used to assess depression in adults with and without ASC, and then evaluate these tools for their appropriateness and measurement properties. Medline, PsychINFO and Web of Knowledge were searched for studies of depression in: (a) adults with ASC, without co-morbid intellectual disability; and (b) adults from the general population without co-morbid conditions. Articles examining the measurement properties of these tools were then searched for using a methodological filter in PubMed, and the quality of the evidence was evaluated using the COSMIN checklist. Twelve articles were identified which utilized three tools to assess depression in adults with ASC, but only one article which assessed the measurement properties of one of these tools was identified and thus evaluated. Sixty-four articles were identified which utilized five tools to assess depression in general population adults, and fourteen articles had assessed the measurement properties of these tools. Overall, two tools were found to be robust in their measurement properties in the general population-the Beck Depression Inventory (BDI-II), and the patient health questionnaire (PHQ-9). Crucially only one study was identified from the COSMIN search, which showed weak evidence in support of the measurement properties of the BDI-II in an ASC sample. Implications for effective measurement of depression in ASC are discussed. Autism Res 2018, 11: 738-754. © 2018 The Authors Autism Research published by International Society for Autism Research and Wiley Periodicals, Inc. LAY SUMMARY: Depression is the most common mental health problem experienced by adults with autism. However, the current study found very limited evidence regarding how useful tools developed for the general population are for adults with autism. We therefore suggest how these tools could be adapted to more effectively assess depression in adults with autism, and improve these individuals access to mental health assessment and support.
Autism research : official journal of the International Society for Autism Research, 2018 · doi:10.1002/aur.1922