Assessing Activity of Daily Living Task Performance Among Autistic Adults

Activities of daily living (ADLs) are activities that people engage in on a routine basis, such as brushing their teeth, preparing a meal, and caring for their child. Independence with ADLs is associated with better outcomes in independent living, education, employment, relationships, and mental health. Therefore, this perspective piece includes a review of the literature and assessment databases to identify and summarize ADL assessments for Autistic adults. These assessments were compared and analyzed using the neurodiversity paradigm. Specifically, we compared assessments using predetermined priorities the authors identified: (1) assessment type, (2) inclusivity, and (3) performance factors. We identified five unique norm-referenced measures, four performance-based measures, and a variety of checklists, surveys, questionnaires, and/or interviews used to assess ADL performance among Autistic adults. The authors present their perspectives regarding the challenges with the current assessments, including the high-frequency use of norm-referenced assessments, lack of inclusivity, and failure to consider performance factors (e.g., sensory, motor, and emotional), and the paucity of assessments designed specifically for Autistic adults older than 30 years. In response to these challenges, we recommend researchers partner with Autistic adults to develop a new assessment tool. If researchers or clinicians are using existing measures, we recommend that they utilize self-report over proxy-report and include methods to improve the accessibility of the assessment. We also recommend that clinicians and researchers offer breaks, comfort objects, or sensory modifications during the assessment to decrease anxiety; and ask follow-up questions to understand whether environment or emotional health are impacting one's ADL performance.

Why is this topic important?: Activity of daily living (ADL) assessments are used to determine what Autistics can and cannot do in their day-to-day life, what services they may be eligible for, and to monitor gains. However, we struggled to find an assessment that was useful and relevant from an Autistic point-of-view.What is the purpose of this article?: The purpose of this article was to review and evaluate current ADL assessments usefulness for Autistics and provide recommendations for improving the ADL assessment process.What is the perspective of the authors?: The first author is an Autistic social worker and the second author is an occupational therapist and postdoctoral fellow. The authors' perspective is based in the neurodiversity paradigm and social model of disability, which centers on respecting and acknowledging differences in the brain and their effects on Autistics' lives. We believe in strengths-based approaches versus deficit-based models.What did you find about this topic?: We found 17 measurement tools, some that compared Autistic ADL performance with neurotypical performance, a few that were observation-based meaning the researcher or clinician watched the Autistic person complete the ADLs, and many forms or guides that asked questions about ADL performance. Only six measures allowed Autistic people to respond to the questions themselves, whereas the rest of the measures had someone else respond for them. These measures did not include questions about how sensory differences (e.g., feeling upset by the feeling of jeans or the taste of minty toothpaste) or feeling sad or nervous may also impact ADL performance.What do the authors recommend?: We recommend that researchers partner with Autistic adults to make new ADL assessments. If researchers or clinicians are using previously made ADL assessments, we recommend that they use self-report and adapt the materials to make it easier to understand (e.g., using pictures). We also recommend that researchers and clinicians ask Autistics what they need or want to make the assessment easier and more comfortable for them. Finally, researchers and clinicians should ask follow-up questions about sensory differences and whether someone is feeling sad or nervous to know how this impacts their ability to do their ADL tasks.How will these recommendations help autistic adults now or in the future?: These recommendations will help Autistic adults be more involved in the evaluation process, which will make the assessments more trustworthy and relevant to Autistics. This also could help more Autistic people get services and supports that are useful to them. Finally, this may help researchers when monitoring if these supports or services actually work.