Measurement properties of tools used to assess suicidality in autistic and general population adults: A systematic review

Cassidy, Sarah; Bradley, Louise; Bowen, Erica; Wigham, Sarah; Rodgers, Jacqui

doi:10.1016/j.cpr.2018.05.002

Cited by 72 publications

(91 citation statements)

References 77 publications

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“…One expects a high level of rigor when translating or adapting measures cross-culturally or cross-linguistically 11,12 ; however, this same care and attention has not traditionally been given to studies that include autistic adults as participants. For example, two recent systematic reviews found a dearth of studies assessing the measurement properties of tools to measure depression 34 or suicidality 35 in autistic adults and made recommendations for needed adaptations. Yet the literature provides almost no guidance on what an adaptation process may entail.…”

Section: Discussionmentioning

confidence: 99%

Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations

Nicolaidis

Raymaker

McDonald

et al. 2020

Autism in Adulthood

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Despite growing appreciation of the need for research on autism in adulthood, few survey instruments have been validated for use with autistic adults. We conducted an institutional ethnography of two related partnerships that used participatory approaches to conduct research in collaboration with autistic people and people with intellectual disability. In this article, we focus on lessons learned from adapting survey instruments for use in six separate studies. Community partners identified several common problems that made original instruments inaccessible. Examples included: (1) the use of difficult vocabulary, confusing terms, or figures of speech; (2) complex sentence structure, confusing grammar, or incomplete phrases; (3) imprecise response options; (4) variation in item response based on different contexts; (5) anxiety related to not being able to answer with full accuracy; (6) lack of items to fully capture the autism-specific aspects of a construct; and (7) ableist language or concepts. Common adaptations included: (1) adding prefaces to increase precision or explain context; (2) modifying items to simplify sentence structure; (3) substituting difficult vocabulary words, confusing terms, or figures of speech with more straightforward terms; (4) adding hotlinks that define problematic terms or offer examples or clarifications; (5) adding graphics to increase clarity of response options; and (6) adding new items related to autism-specific aspects of the construct. We caution against using instruments developed for other populations unless instruments are carefully tested with autistic adults, and we describe one possible approach to ensure that instruments are accessible to a wide range of autistic participants.

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Section: Discussionmentioning

confidence: 99%

Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations

Nicolaidis

Raymaker

McDonald

et al. 2020

Autism in Adulthood

View full text Add to dashboard Cite

show abstract

“…Clinicians are in crucial need of appropriate tools for this purpose, especially given their anxiety about treating mental ill-health in autistic people [81]. The development of brief autism-specific screening tests for suicidality is fortunately underway [117], and we laud this important effort.…”

Section: Limitations and Directions For Future Studymentioning

confidence: 99%

Links between self-injury and suicidality in autism

et al. 2020

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Background: Autistic individuals without intellectual disability are at heightened risk of self-injury, and appear to engage in it for similar reasons as non-autistic people. A wide divergence of autistic perspectives on self-injury, including those who frame it as a helpful coping mechanism, motivate investigating the link between self-injury, suicide ideation, and attempts which has been reported in typically developing individuals. Method: One hundred three autistic participants completed the Non-Suicidal Self-Injury Assessment Tool (NSSI-AT), the Suicide Behaviors Questionnaire (SBQ-R), and the Interpersonal Social Evaluation List (ISEL-12) across two online studies. Logistic regression was conducted to predict self-harming status via responses to questions on suicidality, and to predict whether certain self-injurious behaviors, including cutting, were especially associated with suicide ideation and attempts. Non-parametric correlation analysis examined relationships between suicide ideation/ attempts and other variables that might characterize self-harmers especially at risk of suicidality. These included perceived access to social support, purposes or reasons for self-injury, the number of different self-injurious behaviors engaged in, the duration and lifetime incidence of self-injury, and the individual's feelings about their self-injury. Results: While self-injuring status was significantly predicted by responses to a question on suicide ideation and attempts, there was no relationship between suicide ideation/attempts and a participant's personal feelings about their self-injury. The method of cutting was also predicted by suicide ideation and attempts, though other methods common in autistic people were at borderline significance. Use of self-injury for the regulation of low-energy emotional states like depression, for self-punishment or deterrence from suicide, and for sensory stimulation, was associated with suicide ideation and attempts, as was the number of self-injurious behaviors engaged in. There was no significant relationship between suicide ideation/attempts and the duration and lifetime incidence of self-injury or social support. Conclusions: These preliminary data suggest that while individuals might frame their self-injury as a positive or neutral thing, there remains a concerning relationship between self-injury and suicidality which exists regardless of individual feelings on self-injury. This is consistent with the theoretical perspective that self-injury can be a "gateway" through which individuals acquire capability for lethal suicidal behaviors. The data highlight that particular methods (cutting) and reasons for self-injury may be of significant concern, but this information, which might be of extreme value for clinicians, requires further investigation and validation.

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“…3 The measurement of autistic adult outcomes remains in its infancy, with few valid and reliable measures, and a reliance on utilizing standardized measures validated for other non-autistic groups in research and practice. 5,6 Autism research has also historically neglected to meaningfully involve all autistic adults in research, such as those with an intellectual disability or those who speak few or no words, 7 although leaders in the field have paved the way for these efforts. Advancing measurement to understand autism in adulthood will require new measurement methods appropriate and validated for all autistic adults.…”

mentioning

confidence: 99%