Representativeness of autistic samples in studies recruiting through social media

Rødgaard, Eya-Mist; Jensen, Kristian; Miskowiak, Kamilla Woznica; Mottron, Laurent

doi:10.1002/aur.2777

Cited by 53 publications

(22 citation statements)

References 61 publications

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“…As reflected in their qualifications, they likely corresponded to a profile with fair-to-strong camouflage and compensation abilities, more normative verbal style, and possibly stronger executive function than others within the autistic spectrum [ 120 – 122 ]. Individuals with this profile seem disproportionately represented in studies which recruit via social media or other online methods [ 123 , 124 ]. As this is the approach adopted by the present study and several others in this relatively young field [ 22 , 30 , 31 , 52 – 54 ], findings are likely unrepresentative of all within the diverse autistic community.…”

Section: Discussionmentioning

confidence: 99%

Non-suicidal self-injury and its relation to suicide through acquired capability: investigating this causal mechanism in a mainly late-diagnosed autistic sample

et al. 2022

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Background Non-suicidal self-injury (NSSI) has been linked with a higher risk of suicide attempts in autistic and non-autistic people. In the general population, NSSI may confer acquired capability for suicide by eroding one’s fear and avoidance of pain and death. The present study aimed to explore acquired capability as the mediator of increased suicide risk conferred by NSSI in autistic and non-autistic adults. Methods Autistic and non-autistic adults (n = 314, n = 312) completed an online survey exploring lifetime suicide attempts, experience with NSSI, and acquired capability for suicide. We explored relationships between lifetime incidence of NSSI and lifetime suicide attempts via three facets of acquired capability (pain tolerance, reduced fear of death, and mental rehearsal of suicide). In self-harming participants (224 autistic and 156 non-autistic), we explored whether particular types and features of NSSI might be especially associated with capability and through that with suicide: namely engagement in scratching, cutting, and self-hitting, and engaging in more numerous forms of NSSI. Results While a higher frequency of NSSI was associated with all three facets of acquired capability, only reduced fear of death and mental rehearsal of suicide mediated an indirect relationship with lifetime suicide attempts. NSSI also directly predicted more numerous suicide attempts. Autistic people tended towards reduced fear of death and mental rehearsal regardless of NSSI status. Among self-harming autistic and non-autistic participants, cutting and an increased number of NSSI behaviours were associated with lifetime suicide attempts directly and indirectly via acquired capability. In both groups, self-hitting was associated with lifetime suicide attempts only via acquired capability. Limitations Our cross-sectional methodology negates inferences of directionality. While we controlled for age, our samples were poorly matched, with the autistic group two times older on average. The autistic sample, predominantly late-diagnosed, female and highly qualified, were unrepresentative of the whole autistic community. Conclusions Our data suggest that acquired capability, as measured herein, is an incomplete explanation for the association between NSSI and suicide risk. A broader construct with stable and transient facets may offer greater explanatory power, but it is probable that other variables explain or provide additional means through which this association arises.

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Section: Discussionmentioning

confidence: 99%

Non-suicidal self-injury and its relation to suicide through acquired capability: investigating this causal mechanism in a mainly late-diagnosed autistic sample

et al. 2022

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“…In the current study, 99% of participants scored above the AQ28 cutoff (>65) indicative of ASD. Consistent with other online self‐report survey research in autistic adults, the sample included a relatively high proportion of participants designated female at birth (Rødgaard et al, 2022; Rubenstein & Furnier, 2021) compared to population‐based estimates for autistic children (Maenner et al, 2021) and adults (Dietz et al, 2020). The study was approved by The George Washington University Institutional Review Board (IRB) and all participants provided informed consent.…”

Section: Methodsmentioning

confidence: 99%

Self‐reported cognitive decline among middle and older age autistic adults

et al. 2022

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Very little is known about autistic adults as they age. Early evidence suggests a potentially high risk for dementia and atypical cognitive decline in autistic middle age and older adults. Research in the general population indicates that self-reported cognitive decline may predict future dementia earlier than performance-based measures. Nevertheless, self-report dementia screeners have not been used to date in autism research. Therefore, in a sample of middle and older age autistic adults (N=210), participants completed a self-rated dementia screener, the AD8, to describe the prevalence of cognitive decline, to examine associations of cognitive decline with age, sex designated at birth, and autistic traits, and to document the psychometrics of a dementia screener in autistic adults. We found high rates of cognitive decline with 30% of the sample screening positive. The most common symptoms were declining interest in leisure activities, and increases in everyday problems with thinking, memory, and judgment. There was evidence that autistic individuals designated female at birth may be more vulnerable to cognitive decline than autistic individuals designated male at birth. Notably, reports of cognitive decline did not vary by age. Modestly elevated autistic traits were found in those screening positive versus negative for cognitive decline. Finally, the psychometrics of the dementia screener were good, including convergent validity with an independent measure of current memory problems. These results could signal an emerging public health crisis in autistic adults as they age, and support the potential utility of self-report measures for early screening for cognitive decline in this population.

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“…Autism studies that sample through online (social media) channels are at risk of sampling bias, including reversed sex ratio (more women than men), higher education levels, less participants with an intellectual disability and a later age of diagnosis compared to samples from a population study (Rødgaard et al, 2022). Some of these biases can be seen in the sample from Study 1.…”

Section: Studymentioning

confidence: 99%