The authors of a perspective piece published in Autism in Adulthood noted several concerns they have regarding existing assessments of activities of daily living (ADLs) for autistic people and provided recommendations for researchers and clinicians, including partnering with Autistic adults to develop a new assessment tool and utilizing self-report.
The authors searched the American Psychological Association’s (APA) PsycArticles, CINAHL, Education Full Text (H.W. Wilson), APA PsycTests, Psychology and Behavioral Sciences Collection, APA PsycInfo, PubMed,EMBASE, OTJR: Occupation, Participation and Research,, and the American Journal of Occupational Therapy (AJOT).
They included studies that described the development of an assessment tool that evaluated independence in ADLs in Autistic adults, reported on the psychometric properties of an ADL assessment tool that could be used with adults, or described using an assessment to assess daily living skills.
They compared assessments from the 69 studies they identified based on assessment type, inclusivity, and performance and environmental factors. The majority of these studies reported using norm-referenced assessments.
Of the 17 measurement tools they found (5 unique norm-reference measures, 4 performance-based measures and 8 checklists, surveys and interviews used for these assessments), only 6 allowed autistic people to respond to the questions themselves rather than having a proxy respond for them. Also, 2 of the 6 (Pediatric Evaluation of Disability Inventory-Patient Reported Outcome [PEDI-PRO] and AAMR) were explicitly designed for the self-reporting of those with developmental disabilities.
A total of 2 assessments reported utilization of specific methods to improve accessibility: the adolescent and young adult activity card sort uses images with which individuals can indicate which ADL tasks they complete and the PEDI-PRO uses images, text-to-speech features, and practice items to support comprehension.
None of the tools considered sensory or emotional regulation in the context of ADL performance while 2 (PEDI-PRO and the Pediatric Evaluation of Disability Inventory-Computerized Adaptive Technology [PEDI-CAT]) considered motor challenges explicitly.
The authors said clinicians should work with Autistics to work on the individual’s unique goals and the areas in which they need additional support or environmental modification — regardless of peer comparisons and with consideration for interdependence opportunities. Performance-based assessments may be more able to identify these areas.
They also recommended avoiding “functional labeling” (eg “high functioning vs. low functioning”) and including the direct input of Autistics since “assessments that perpetuate and reinforce clinicians’ ignorance and/or bias toward deficits and the medical model…can lead to suppression of natural behaviors [which] can lead to learned helplessness, a lack of intrinsic motivation or autonomy, low self-esteem, unhealthy coping mechanisms, increased vulnerability to abuse, and high stress and anxiety levels.”
They also said clinicians need to consider personal and environmental factors — such as context, sensitivities, and differences in technologies in various settings — that may impact the Autistic individual’s ADL performance.
In addition, only half of the assessments were developed for adults older than 30 years old.
The researchers recommended collaborating with Autistics to develop norm-referenced assessments with large samples of adults who are neurodiverse or specifically for Autistics that allow for self-report and include methods to increase accessibility (eg, clarifying information, adding links that can lead to further explanations of terms, using images, and including autism-specific content) and consider performance and age factors.
Researchers and clinicians using previously developed assessments could ask Autistics questions regarding their beliefs about success in completing ADL tasks and what modifications they need during assessment to be comfortable during the assessment.
“If clinicians embrace Autistics’ differences and their specific goals, they can work together to identify environmental modifications, adaptations, or interventions that can promote independence and/or interdependence in ADL tasks,” the authors said.
Krempley T, Schmidt EK. Assessing activity of daily living task performance among autistic adults. Autism in Adulthood. Published online March 18, 2021. doi: 10.1089/aut.2020.0042