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

Abstract

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.

Measurement Properties of the Suicidal Behaviour Questionnaire-Revised in Autistic Adults

“…Similar to the findings in our study, autistic adults tend to report difficulties with complex language, imprecise response options, lack of autism relevant items, and inappropriate or insensitive language (e.g. Nicolaidis et al 2020 ). Therefore, it will be important to avoid multi-clause questions, include questions about the intensity and frequency of suicidal thoughts without a plan evident, and provide a more concrete alternative to gauge future suicide intent.…”

Development and Validation of the Suicide Behaviours Questionnaire – Autism Spectrum Conditions in Autistic, Possibly Autistic and Non-Autistic Adults.

“…COSMIN argues that content validity is the most important foundational property on which all other measurement properties rely on -if a tool is not relevant or clear to the target group, then it is unlikely to adequately capture the intended construct in that group. Despite this, few studies conduct extensive work to establish content validity of tools in groups, using rigorous methods such as participatory approaches [19,[60][61] or cognitive interviewing [62]. In contrast, we conducted extensive work to ensure that the adapted SBQ-ASC captured the unique experience of suicidality in autistic and possibly autistic adults, prior to nalising the tool and assessing its measurement properties in autistic, possibly autistic and non-autistic adults.…”

“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout

“…AASPIRE meets regularly through text-based chat and email. More information on our processes and guidelines can be found in our participatory methods publications [17][18][19][20] Our community partners identified the study topic, helped shape the grant proposal, and identified the key social media documents analyzed. The PI created first drafts of study materials and the full group discussed and edited the final documents.…”