A Lifespan Approach to Patient‐Reported Outcomes and Quality of Life for People on the Autism Spectrum

This article reports on the development of short forms from the Patient-Reported Outcomes Measurement Information System (PROMIS™) Sleep Disturbance (SD) and Sleep-Related Impairment (SRI) item banks. Results from post-hoc computerized adaptive testing (CAT) simulations, item discrimination parameters, item means, and clinical judgments were used to select the best-performing 8 items for SD and SRI. The final 8-item short forms provided less test information than the corresponding full banks, but correlated strongly with the longer forms. The short forms had greater measurement precision than the Pittsburgh Sleep Quality Index (PSQI) and the Epworth Sleepiness Scale (ESS), as indicated by larger test information values across the continuum of severity, despite having fewer total items--a major advantage for both research and clinical settings. Show more

Autobiographical descriptions and clinician observations suggest that some individuals with autism, particularly females, ‘camouflage’ their social communication difficulties, which may require considerable cognitive effort and lead to increased stress, anxiety and depression. Using data from 60 age- and IQ-matched men and women with autism (without intellectual disability), we operationalized camouflaging in adults with autism for the first time as the quantitative discrepancy between the person’s ‘external’ behavioural presentation in social–interpersonal contexts (measured by the Autism Diagnostic Observation Schedule) and the person’s ‘internal’ status (dispositional traits measured by the Autism Spectrum Quotient and social cognitive capability measured by the ‘Reading the Mind in the Eyes’ Test). We found that the operationalized camouflaging measure was not significantly correlated with age or IQ. On average, women with autism had higher camouflaging scores than men with autism (Cohen’s d = 0.98), with substantial variability in both groups. Greater camouflaging was associated with more depressive symptoms in men and better signal-detection sensitivity in women with autism. The neuroanatomical association with camouflaging score was largely sex/gender-dependent and significant only in women: from reverse inference, the most correlated cognitive terms were about emotion and memory. The underlying constructs, measurement, mechanisms, consequences and heterogeneity of camouflaging in autism warrant further investigation. Show more

Camouflaging entails ‘masking’ in or ‘passing’ social situations. Research suggests camouflaging behaviours are common in autistic people, and may negatively impact mental health. To enhance understanding of camouflaging, this study examined reasons, contexts and costs of camouflaging. 262 autistic people completed measures of camouflaging behaviours, camouflaging contexts (e.g. work vs. family), camouflaging reasons (e.g. to make friends) and mental health symptoms. Findings indicated a gender difference in reasons for camouflaging, with autistic women more likely to endorse “conventional” reasons (e.g. getting by in formal settings such as work). Both camouflaging highly across contexts and ‘switching’ between camouflaging in some contexts but not in others, related to poorer mental health. These findings have implications for understanding camouflaging in autistic adults. Show more