Assessing Activity of Daily Living Task Performance Among Autistic Adults

Abstract

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.

Lay summary

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.

Background

Activities of daily living (ADLs) refer to “activities oriented toward taking care of one's own body” that are “completed on a routine basis,” such as bathing or showering, toileting, dressing, eating and feeding, mobility, hygiene and grooming, or sexual activity.¹ There is a growing body of literature highlighting the new challenges Autistics face as they transition into adulthood and the demands associated with ADLs become more complex.² One area Autistics often experience challenges is with ADLs and adaptive behavior.^2–5 ADLs are one component of adaptive behavior skills; adaptive behavior skills refer to conceptual, social, and practical skills defined by typical performance, rather than ability, and are skills that people learn and refine as they age to facilitate their function in their everyday life tasks.^2,6 We will focus on ADL tasks specifically due to previous concerns identified with social and communication impairments influencing other adaptive behavior domains that do not explicitly measure communication, such as certain ADLs in the daily living skills domain, and because autistic self-advocates have suggested that ADLs are an important area to focus on.^7,8 There is a significant need to address these challenges as they contribute to disparities in independent living, employment, education, and social and intimate relationships for autistic adults compared with those with other developmental disabilities and those without disabilities.^2,9,10 Challenges associated with ADLs also have been found to negatively impact overall mental health and quality of life for the autistic individual.^2,9 In an effort to identify appropriate supports and services and to evaluate the efficacy of these supports and services, a reliable and valid measure of ADL performance is needed for clinical and research settings. Yet, there is no “gold standard” assessment utilized across fields.

There are numerous possible reasons for the lack of a “gold standard” assessment to measure ADL performance among Autistic adults. One reason may be due to the vast differences between assessment types and inherent needs. For example, there may be benefits for researchers using norm-referenced assessments, as they can compare large broad samples and discern differences in performance compared with a “normative” sample. Similarly, some clinicians may be required to use norm-referenced assessments to determine eligibility to receive services, whereas others may prefer performance-based assessments that allow researchers or clinicians to observe an individual completing an ADL task and identify areas of intervention or adaptation that may best support them.^11,12 Additionally, some researchers and clinicians may prefer questionnaires, interviews, or checklists due to time and cost constraints.^11,12

Another reason for the lack of a “gold standard” assessment may be concerns associated with the inclusivity of ADL assessments. We describe inclusivity of an assessment as being socially valid (e.g., the acceptability and satisfaction of an assessment tool for the given constructs among the people under evaluation), permitting self-report, and including methods to improve accessibility for respondents. In general, few assessments have been found to be socially valid or include Autistics in the development of the assessment.^13–15 This is vital because even when assessment tools have established psychometrics with Autistics there is concern that they are missing important information from an Autistic perspective.¹¹ Many assessments also do not use Autistic input as a reporter for their own assessment, instead they rely on parent or caregiver-report. This is concerning since parents and other proxy-reporters may not share the same concerns, needs, and goals as the autistic adult.^16,17 This is also problematic because it excludes Autistics from being involved in an evaluation of their own abilities.

Finally, there is debate in the field regarding the specific constructs that should be included when measuring ADL performance. As previously mentioned, some clinicians report concerns with using adaptive behavior measures due to previous work that suggests social and communication impairments can influence other domains, such as certain tasks in the daily living skills domain.⁷ However, there is a need to consider other factors that may influence ADL performance, such as individual factors (e.g., sensory, motor, and emotions) and contextual factors, such as one's environment and access to resources.^18–20 Many Autistics have sensory differences, which may include hyper- or hyporeactivity to sensory input in one's environment and this may impact ADL performance, as it has been shown to do among Autistic children.^20,21 Additionally, some Autistics experience motor delays or difficulties, which has been found to impact ADL performance.^19,22,23 Finally, many autistic adults have anxiety, which can be related to changes in routine, sensory experiences, cognitive overload, unfamiliar social situations or difficulty in understanding the social situations, or from undiagnosed or diagnosed trauma.^16,24–26 In fact, Autistics are more likely to experience anxiety than neurotypical individuals.²⁶ Furthermore, anxiety may interfere with ADL performance and even if a person is alexithymic²⁷ they may still exhibit behaviors associated with their anxiety. Heightened anxiety may lead to an inability to complete ADLs on certain days when they are feeling nervous, sad, or scared, as it has been shown to do in Autistic children.^28,29 However, despite previous work demonstrating the association between these factors and ADL performance, and experts in the field calling for their consideration,³⁰ it is challenging to find ADL assessments that consider performance and environmental factors.

This perspective piece aims to describe assessment tools available to evaluate ADLs for Autistics adults, including the assessment type, inclusivity, and consideration of performance and environmental factors. We initiated this work because we were unable to identify an assessment tool to evaluate Autistic adults' ADL performance that was useful and appropriate for a research study from the autistic co-researcher of that specific study's perspective. This warranted formal exploration and critique of available ADL measures.

Positionality

The first author is an autistic female self-advocate with a Masters in Social Work and a Bachelor's degree in religion and a minor in humanities. Her research interests are societal perspectives of autism, trauma related to applied behavioral analysis, and ethical considerations for evidence-based practices in autism research. The second author is a nonautistic female postdoctoral researcher and occupational therapist. Her clinical experience is primarily with the pediatric population, but her research is focused on Autistic adolescents and adults.

In this perspective piece, the authors use the term “Autistics” to describe groups of Autistic people due to self-advocates' preferences for identity-first language and to embrace the first author's personal preferences.^31–34 Both authors firmly support the neurodiversity paradigm. The neurodiversity paradigm is a biopsychosocial model that views autism as a natural variation in the brain that deserves equal respect and acceptance.^35,36 The neurodiversity paradigm suggests that we embrace biological and genetic differences and instead adapt the environment to negate the distress and trauma Autistics experience.^35,36 It is also important to note we do not distinguish between autistic individuals with or without diagnosed intellectual disability since the accuracy of intelligence measures has been questioned and may not be relevant or accurate.^37–39 Also, we believe that methods should be taken to ensure the opinions of all Autistics are included in the assessment process regardless of intellectual ability. Finally, the assessment tools included in this perspectives piece view ADLs within a Western-centric lens.

Methods

For this perspective piece, we conducted a thorough review of the literature. Specifically, we searched the following databases: (1) American Psychological Association's (APA) PsycArticles, CINAHL, Education Full Text (H.W. Wilson), APA PsycTests, Psychology and Behavioral Sciences Collection, APA PsycInfo, (2) PubMed, (3) EMBASE, (4) OTJR: Occupation, Participation and Research, and (5) American Journal of Occupational Therapy (AJOT) to identify relevant articles. We included OTJR and AJOT since occupational therapy practitioners facilitate participation in everyday life activities for their clients and therefore are likely to include ADL assessments or interventions in their research. The second author screened all relevant articles by title and abstract. We included studies if they described the development of an assessment tool that evaluated independence in ADLs for autistic adults, reported on the psychometric properties of an ADL assessment tool that could be used with adults (18 years or older), or described utilizing an assessment to assess daily living skills in their study. Once we identified tools, we conducted a narrower search of that specific assessment to identify any established psychometric properties. Additionally, we used web-based searches of sites such as Pearson's Assessments to identify more descriptive details about assessments including the time it takes to complete and qualifications for the assessor. Due to the nature of our objectives to identify all relevant assessment tools, we did not impose year limits. We excluded studies if they were not in English, were not acceptable for use with autistic adults, or did not include a measure of ADL performance.

We compiled assessment studies into a table that included author(s) and publication date, study objective(s), population (i.e., diagnosis and ages), and measurement tool utilized in the study (Supplementary Table S1). Next, we sought access to each assessment tool; however, if we could not obtain an assessment due to cost or access, we still included it with the limited information we had available through the studies that described that particular assessment. We then compiled data for each assessment tool identified in this search, including descriptions and psychometric properties of each measure (Table 1). We compared assessments using predetermined priorities the authors identified: (1) assessment type, (2) inclusivity, and (3) performance and environmental factors.

Table 1.

Daily Living Skill Assessments, Details, and Psychometric Properties for Autistics

Assessment	Population	Respondent	Time	Description	Psychometric properties
Norm-referenced assessments
Vineland Adaptive Behavior Scales, second edition63	Individuals birth to 90 years	Parent/caregiver or teacher	20–60 minutes	A semi-structured interview format that is conducted with a qualified health professional. This measure includes three domains: communication, daily life, and social skills. In the daily life domain, there are three subdomains: personal, academic, and school community. This assessment tool is available in Spanish. This tool requires someone with a master's degree in psychology, education, speech language pathology, occupational therapy, social work, counseling, or a similar field to conduct, score, and interpret.	Internal consistency (r = 0.84–0.96). Test–retest reliability (r = 0.83–0.97). Minimal clinically important differences between 2.8 and 3.4 points for the Adaptive Behavior Composite and between 3.0 and 3.3 for the daily living skills domain for Autistics. There are established norms for Autistics available if clinicians or researchers want to compare performance with other Autistics, instead with the TD population.45,65
Pediatric Evaluation of Disability Inventory, Computerized Adaptive Test44	Autistic children and youth aged 3–21 years	Parents or caregivers	10–20 minutes	This norm-referenced assessment evaluates ADLs according to underlying ability using the International Classification of Functioning, Disability, and Health framework. Specifically, this assessment measures four domains: daily activities, social/cognitive, mobility, and responsibility. Participants can identify the level of ease at which the child can complete the task (unable, hard, a little hard, easy). This assessment uses computer adaptive technology to determine which items should be presented dependent on the respondent's responses, therefore improving the efficiency of the test. There are two versions, one is a “speedy” version and another more comprehensive version. This tool requires someone with a master's degree in psychology, education, speech language pathology, occupational therapy, social work, counseling, or a similar field to conduct, score, and interpret.	Excellent test–retest reliability (>0.95 across domains).65 High correlations (ICC >0.95).30
Diagnostic Adaptive Behavior Scale66	Individuals with intellectual or developmental disability, including autism aged 4–21 years	Parents, family members, or some form of respondent familiar to the individual	30 minutes	This assessment includes 75 items that were identified using item–response theory from an original pool of 260 items. This assessment was designed to identify a cutoff area of significant adaptive behavior deficits across conceptual, social, and practical skills. Items are ranked from 0 to 3, indicating that the individual does not do it, does it with some reminders or assistance, does it and sometimes needs reminders or assistance, or does it independently.	Convergent validity with VABS-II (0.70–0.84). Test–retest reliability is good to excellent with ICC = 0.78–0.95. Interrater reliability was excellent with ICC = 0.87.66
ABAS-267	Individuals birth to 89 years	Parent, caregiver, and/or teacher, self-rating option for adults	15–20 minutes	The ABAS-2 has a variety of forms available, including one for adults aged 16–89 years. The ABAS-2 measures adaptive behavior including conceptual, social, and practical skills and was designed for individuals with intellectual disability, attention-deficit hyperactivity disorder, Alzheimer's disease, autism, and other diagnoses. This tool requires someone with a master's degree in psychology, education, speech language pathology, occupational therapy, social work, counseling, or a similar field to conduct, score, and interpret. This assessment is also available in multiple languages.	Internal consistency is high, ranging from 0.97 to 0.99. Test–retest reliability is also high with each coefficient being in the 0.90s. Interrater reliability of the adult form also had coefficient scores of 0.90.
BASC-268	Children and young adults aged 2–25 years	Individual, parent, or teacher	10–20 minutes	This checklist assesses internalized and externalized behavioral difficulties and adaptive function for children, adolescents, and adults up to 21 years of age. This assessment is available in multiple languages.	Internal consistency was high with coefficients in the 0.90s for composite scales and 0.80s for the individual scales. Test–retest reliability was moderate to high with correlations in the 0.80s for composite scores and 0.70s for individual scores. Interrater reliability was moderate with composite scores from 0.57 to 0.74 and individual scores between 0.53 and 0.65. This measure has high construct and convergent validity compared with the Achenbach System of Empirically Based Assessment and the BASC.
Performance-based measures
Goal attainment scaling70	Anyone	Parents, caregivers, or the individual	20–40 minutes	Goal attainment scaling is a method of scoring progress on individualized goals. Clinicians or researchers establish a criteria for a “successful” outcome (0) and then define what is considered “somewhat better” (+1), “much better” (+2) or “somewhat worse” (−1), “much worse” (−2). Some recommend using a modified scale for Autistics, specifically −2 level represents baseline and if the individual makes no progress that is considered the worst possible outcome. Therefore, −1 indicates progress, but 0 through +2 remain the same (Ruble et al., 2012).	Overall validity is limited due to the nature of assessing the construct of meeting goals and not one specific construct.71 Reliability of GAS was assessed specifically for Autistics. Interrater reliability is excellent with ICC = 0.96. Also, of note, there were no statistically significant differences among teachers and researchers completing GAS or if they were reviewing videos or live observations.72
University California, San Diego Performance-Based Skills Assessment, Brief56	Severely mentally ill adultsa	Performance-based/observation based	15 minutes	This assessment tool is a performance-based measure that evaluates an individual's ability to engage in everyday living tasks, specifically using three tests of financial and communication ability. For example, these tests include scenarios where individuals are asked to review and accurately pay a bill, contact emergency providers, and schedule a doctor's appointment. Each test has a standardized scoring procedure for assessors to utilize and each individual will receive a total score between 0 and 100.	There are no psychometric properties available specific to the autistic population.
Katz Independence Index73	Older adults	Questions and/or observations	NS	A 6-item assessment of independence in bathing, dressing, toileting, transferring, continence, and feeding. Participants' performance in these tasks is summarized as grades, where A is most independent and G is most dependent completion of the task.	No formal reliability or validity reports available.
Katz Instrumental Activities of Daily Living74	Older adults	Questions and/or observations	NS	An assessment that analyzes independence in eight IADLs, including laundry, responsibility of medications, food preparation, and shopping, among others. These assessment breaks down the tasks associated with successful completion of each activity and allows you to rank whether or not they were able to complete that specific task to get an overall score of independence in IADLs.	No formal reliability or validity reports available.
Checklists, surveys, or interviews
Waisman Activities of Daily Living69	Adolescents and adults with intellectual or developmental disabilities (i.e., autism, Down syndrome, fragile X syndrome, and intellectual disability)	Parents of the adolescent or adult	5 minutes	A 17-item parent report measure of personal care, housekeeping, and meal-related activities. Items assess activities such as dressing, grooming, chores, meal preparation, and community mobility. Items are rated on a 3-point scale of independence (0 = cannot complete, 1 = completes with help, 2 = completes independently) and are summed to achieve an overall score of independence.	Internal consistency: Cronbach's alpha = 0.90 in autism. Criterion validity compared with Vineland Screener's Composite Score (r = 0.78) and “Daily Living Skills” Subdomain (r = 0.82). Reproducibility: k = 0.93 in autism. Responsiveness: Individuals with autism improved between 1.1 and 1.6 points over time. No floor or ceiling effects for autistic participants.
Adolescent and Adult Psychoeducational Profile.75	Adolescent or adults with severe “developmental handicaps”	The direct observation scale is done by a trained clinician; the home scale involves an interview with a parent, whereas the school/work involves an interview with the teacher or supervisor.	90 minutes	This assessment is an extension of the Psychoeducational Profile and is geared toward identifying needs and goals for autistic adolescents and adults related to independence in their home and community. This assessment has three scales: Direct Observation (4 items per functional area), Home (8 items per functional area), and School/Work (8 items per functional area) with six functional areas each. The functional areas are vocational skills, independent functioning, leisure skills, vocational behavior, functional communication, and interpersonal behavior.66,67	Acceptable reliability was determined for autistic participants on the direct observation scale (R = 84.4), home scale (R = 82), and school/work scale (R = 83.1), with the exception of the Interpersonal behavior section for both the direct observation scale (R = 43.8) and the school/work scales (58.3). Validity was determined by comparing the results with other adaptive behavior measures in participants individualized education programs and by confirming through questionnaires with parents and group-home managers.75
The Revised ADL Index76	Adults with intellectual disability living at home	Parent or caregiver	NS	The revised ADL index was a measure modified from the Barthel Index,66 which included 31 items of personal and instrumental ADL function that was rated on a 4-point Likert scale.	No psychometric properties were found.
Frenchay Activities Index55	Adults poststroke	Interview	5 minutes	This survey assesses IADL participation for individuals after stroke. Specifically, there are 15 items related to domestic chores, leisure/work, and outdoor activities. These items are scored using a 1–4 Likert scale where 1 is the lowest level of completion and 4 is the highest.	There are no psychometric properties available specifically for Autistics.
ABTAC77	Individuals with severe intellectual disabilities	Parent- or caregiver-report	NS	This checklist measures daily living and self-help skills in dressing, grooming, hygiene, bathing, housekeeping. and meal preparation. Items are scored from 1 to 4 dependent on level of assistance. A score of 1 indicates maximum assistance or dependence, 2 is moderate, 3 is minimal, and 4 indicates that the individual can independently perform the task.	Test–retest reliability ranged from 0.85 to 0.99. Interrater coefficients ranged from 0.83 to 0.97.
AYA-ACS43	Older adults	Individual	NS	This assessment tool reviews a variety of culturally relevant activities either drawn or photographed and participants respond “yes” or “no” to the question of whether they have completed the task drawn or photographed in the past 6 months. Participants are then asked if they are interested in completing that task in the next 6 months.	Excellent test–retest reliability was reported for chores (k = 0.74, p = 0.000), social (k = 0.72; p = 0.000), and education (k = 0.85; p = 0.000). Moderate test–retest reliability was reported for health (k = 0.48; p = 0.000), leisure (k = 0.48; p = 0.000), and work (k = 0.53; p = 0.000). And finally, poor test–retest reliability is identified for the parenting domain (k = 0.15; p = 0.57). Content and face validity has also been reported among adolescents and young adults with and without disabilities, as well as health care professionals. It is unclear the percentage of these individuals that were autistic.43
AAMR Adaptive Behavior Scale: Residential and Community42	Individuals with intellectual disabilities aged 18–80 years	Individual	15–30 minutes	This assessment is a cognitive evaluation designed for individuals with intellectual disability and autism. It measures adaptive behavior for children in residential and community living facilities but has been discontinued and is no longer available for purchase or use.	No psychometric properties were found.
PEDI-PRO40,41	Youth with developmental disabilities aged 14–21 years	Youth with developmental disabilities	NS	This assessment's conceptual framework is aligned with the International Classification of Functioning, Disability, and Health definition of activity and evaluates perceived performance in “Daily Activity,” “Social/Cognitive,” and “Mobility” domains. Youth self-report their perceived performance of activities in the context of valued “everyday life situations” (e.g., work, getting ready in the morning, going to a restaurant) on a 3-point Likert scale from “very easy,” “a little easy,” or “a little hard” instead parent report. This assessment was also developed with youth with developmental disabilities, including Autistic youth to ensure social validity.	Face validity has been established through two studies with youth with developmental disabilities and professionals (study 1: 15.8% of participants were Autistic; study 2: 18.6% of participants were Autistic).40 With a sample that included Autistic youth (46.15%), test–retest reliability was moderate to good for all domains (Daily Activities = 0.81; Social/Cognitive = 0.83; and Mobility = 0.80). Internal reliability was also found to be strong (α = 0.86–0.90).78

^a Not explicitly for autistics.

ABAS-2, Adaptive Behavior Assessment System-II; ABTAC, adaptive behavior task analysis checklist; ADLs, activities of daily living; AYA-ACS, adolescent and young adult activity card sort; BASC-2, Behavior Assessment System for Children II; GAS, goal attainment scaling; IADLs, instrumental activities of daily living; ICC, intraclass correlations; NS, not specified; PEDI-PRO, Pediatric Evaluation of Disability Inventory-Patient Reported Outcome; TD, typically developing; VABS-II, vineland adaptive behavior scale, second edition.

Findings

Our search resulted in the inclusion of a total of 69 studies (Fig. 1), 22 of which reported on the development or psychometric properties of a specific ADL measure and 47 that described an intervention study that utilized a measure of ADLs (Supplementary Table S1).

FIG. 1.

PRISMA flowchart.

Assessment type

We identified a total of 17 measurement tools: 5 norm-referenced, 4 performance-based, and 8 checklists, surveys, questionnaires, or interviews.

Inclusivity

Only six measures use self-report, and two of these tools were explicitly designed for self-report of those with developmental disabilities (e.g., the Pediatric Evaluation of Disability Inventory-Patient Reported Outcome [PEDI-PRO]^40,41 and AAMR⁴²). Additionally, only two assessments we identified report utilization of specific methods to improve accessibility: (1) the adolescent and young adult activity card sort uses images that individuals can sort to indicate which ADL tasks they complete⁴³ and (2) the PEDI-PRO uses images, text-to-speech features, and practice items to support comprehension.^40,41

Performance and environmental factors

In line with the neurodiversity paradigm, the environment may cause distress which may inhibit Autistics' ADL performance.^35,36 As previously described, sensory, motor, and emotional differences have been identified as possible factors that contribute to ADL performance. Yet, none of the identified assessment tools considered sensory or emotional regulation in the context of ADL performance and only two considered motor challenges explicitly (e.g., the Pediatric Evaluation of Disability Inventory-Computerized Adaptive Technology [PEDI-CAT]⁴⁴and PEDI-PRO).^40–42

Interpretation

There are numerous reasons to utilize measures of ADLs for Autistic adults. ADL performance can inform Autism diagnostic evaluations, identify strengths and challenges for intervention goals, and monitor effectiveness of interventions.⁴ This is particularly important as research indicates that ADL performance may impact one's independent living status, employment, education attainment, their relationships, and overall quality of life^2,9,10; however, there is no “gold standard” assessment of ADL performance for Autistics. Furthermore, the available assessments present challenges associated with assessment type, inclusivity, and consideration of performance factors that make it difficult to identify an appropriate ADL assessment for Autistic adults.

The majority of studies reported using norm-referenced assessments designed to compare the Autistic individual with the general population, specifically indicating whether one's ADL performance is similar to their same-aged peers with and without disabilities. Although this can be useful when identifying needs for services or support, we challenge the need for norm-referenced assessments. In line with the neurodiversity paradigm,^35,36 clinicians should work with Autistics to identify ADL tasks where they need additional support or environmental modification regardless of how they compare with their peers. Additionally, assessment tools that compare individuals to a normative standard of ADL completion are lacking consideration for interdependence. Individuals can achieve the same outcomes differently; if someone completes an ADL task with support or assistance, they still are ultimately able to accomplish the task. Therefore, researchers and clinicians need to consider the individual's unique goals when considering their ADL performance. This would allow researchers and clinicians to more readily establish the need for person-centered supports and advocate for policies to reflect these needs. To this point, performance-based assessments may be better in identifying where Autistics may benefit from supports or services to increase their independence or interdependence with ADL tasks.

However, both norm-referenced and criterion-referenced assessments include risks associated with basal and ceiling effects. Specifically, basal effects, or the point at which all items prior would likely be achieved by the individual, may prevent these assessments from identifying accurate standard scores for Autistics with greater support needs.³⁷ One alternative is computerized adaptive tests (CAT), which rely on other measurement theories to construct scales that are responsive to an individual's level. However, basal and ceiling effects and some CAT can operate under the assumption that skills are developed linearly (e.g., if you cannot pick up a Cherrio using a pincer grasp, you cannot use a pincer grasp to pull apart a bag of chips). However, performance factors associated with ADL tasks may cause differences in development for Autistic individuals. Autistics skills and performance abilities may vary day-to-day based on personal and environmental factors, further exacerbating concerns associated with current assessments. Finally, we caution clinicians and researchers alike on using norm-referenced ADL or intelligence quotient assessments to provide a “functional label” of an Autistic individual (e.g., “high functioning vs. low functioning”). These labels are predominantly focused on cognitive abilities and may lead to underassessment of Autistic adults who have been labeled as “higher functioning.”³⁶ This is reflected in current research demonstrating Autistic young adults who required less supports or services during secondary education continue to have challenges with employment, postsecondary education, and independent living following secondary education.⁴⁵ Similarly, those who are labeled “low functioning” also experience disparities due to lowered expectations, restricted freedom, and lack of support to participate in more complex skills and activities.^46–49

Another key concern we identified is the limited inclusion of Autistics in the development and implementation of these tools. The mantra “Nothing About Us Without Us” is a part of the disability rights movement, which aligns with the neurodiversity paradigm. The premise of this movement is that disabled and Autistic people should be the driving stakeholders when determining areas where supports, services, and additional research is needed.^50,51 Aligned with this movement, measurement developers should include the Autistic community when developing measures.¹⁴ Yet, to our knowledge, only one of the assessments reported here actually incorporated Autistics' input when developing the assessment tools (e.g., PEDI-PRO).^40,41 This is a common concern in research, as it often leads to measurement tools or interventions that do not address Autistics' concerns or have social validity.^13–15 Furthermore, many of the identified tools rely on proxy-report and do not actively include Autistics as informants. This is problematic as some research has demonstrated large discrepancies between proxy- and self-report.¹⁷ Tools may utilize proxy-report because they lack accessibility for some Autistics, as few assessments identified in this perspective piece specified the inclusion of methods to improve the accessibility.

The lack of inclusivity in ADL assessments for Autistics and the use of “functional labeling” may also lead to increases in proxy- and clinician decisions without the direct input of Autistics. This is concerning as clinical practice is driven by assessment, and assessments that perpetuate and reinforce clinicians' ignorance and/or bias toward deficits and the medical model (i.e., “fixing” an individual to meet societal expectations) can lead to suppression of natural behaviors (e.g., stimming) or masking. Suppression of natural behaviors 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.^52–54 For example, an Autistic client may stim while anxious, but may hide that need or suppress the behavior for fear of how the assessor may perceive their abilities. This is especially true when they are more obvious stim behaviors (e.g., rocking, hand flapping, spinning, and vocal stims). Natural verbal communication patterns that involve repetition, a focus on special interests, detailed explanations of actions and events, and free association may be curtailed to meet what Autistics believe the assessor wants to see and/or hear. Or a client may force themself to communicate verbally even if it causes distress. Clients may also hide sensory overload from assessors, which means that they are in a state of crisis while trying to meet demands. Obvious sensory equipment, such as headphones and chewies, may be left behind to alleviate potential bias. 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.

Clinicians need to consider personal and environmental factors and how these may impact differences in ADL performance. Specifically, measures need to consider how their sensory experiences and motor differences, as well as how anxiety and depression, may impact their ADL performance.^20,22,23,35 For example, an Autistic adult with challenges with dexterity may prefer toothpicks over loose floss because it increases the size of the object they are using to complete their hygiene tasks. Additionally, someone may be sensitive to rough textures and therefore may not be able to don, doff, or tolerate wearing jeans, but may be able to don, doff, and tolerate wearing leggings or sweatpants. ADL measures need to consider these variations to obtain an accurate picture of ADL performance for each individual person.³⁵ Finally, the environment that an individual is completing an ADL task in may influence one's ability to complete the task. Specifically, people have their own routines and habits that influence their participation. An Autistic adult may have a routine that includes picking their clothes out for the day and dressing while seated on their bed, but when in a novel setting may have challenges identifying how to dress outside their usual context. Additionally, there may be differences in the equipment utilized for specific ADL tasks. For example, microwaves differ and if someone is accustomed and able to use their own microwave that does not mean this skill will automatically translate to another microwave in a clinic or research setting. The ADL assessments described in this review do not ask questions to understand the impact of performance and environmental factors on one's ability to complete their ADLs.

Finally, only 50% of these assessments are developed for adults older than 30 years. These age limitations can make it increasingly difficult to measure ADL performance and may be contributing to the higher frequency of checklists, surveys, questionnaires, and/or interviews that do not have established psychometric properties or the use of assessment tools initially designed for other populations (e.g., the Frenchay Activities Index⁵⁵ for older adults poststroke and the University California, San Diego Performance-Based Skills Assessment, Brief⁵⁶ for adults with mental health conditions). The lack of assessments for Autistic adults older than 30 years may be due to the limited services available to adults after they have transitioned out of secondary education;^57–59 if services are not provided to Autistic adults in this area, then an assessment tool to measure their progress may not have been needed. However, ADL interventions have been identified as high priority by Autistic adults and their families.⁶⁰ Therefore, it is imperative that we develop ADL measures for Autistics that extend throughout the life span.

Recommendations

Despite our critique that norm-referenced assessments are not necessary, we do acknowledge the inherent expectation that norm-referenced data will be included for eligibility of some services and in federally funded research studies, specifically for funding mechanisms that align with the medical model. To address this concern, we recommend researchers collaborate with Autistics to develop norm-referenced assessments with large samples of adults who are neurodiverse or specifically for Autistics. These tools should also allow for self-report and include methods to increase accessibility, such as simplifying or clarifying information, adding links to further explain terms, using graphics or images, and including autism-specific content.^{14,40,41,43,61–63} New tools should also consider how performance factors may impact ADL performance. Assessment tools developed for Autistic adults should also consider the performance of those in middle and late adulthood.

Researchers and clinicians using previously developed tools may consider asking additional questions to better understand whether Autistics feel they can always, sometimes, or never complete the ADL task and what factors contribute (e.g., sensory experiences, motor, emotional, or environmental). Additionally, environmental context should be considered. For example, Autistics should be asked to consider their ability to complete their ADL tasks in their usual environment and routines. Alternately, if Autistics are being observed when completing an ADL task in a novel setting, clinicians and/or researchers should consider possible differences due to the environment and/or tools available to them. If tools have already been developed without Autistics, researchers should consider evaluating the social validity of tools among Autistics before use with them.¹⁴ If needed, tools should be modified or new ones developed that are deemed relevant and appropriate for Autistics by Autistics.⁶¹

We also caution researchers and clinicians when using norm-referenced assessments against using norm-referenced data to categorize or label individuals (e.g., high functioning if they need less supports or low functioning if they need more supports) due to concerns with under-assessing, poor-quality assessments, and/or impacts on expectations and thus service availability. In addition, researchers and clinicians should ask autistic respondents ahead of time what modifications they may need during the assessment to be comfortable and reduce anxiety related to the assessment. Some considerations include dimming the lights, reducing sounds or distractions, fidgets, comfort objects, not wearing perfume, and allowing breaks.

Conclusions

This perspective piece identified five unique norm-referenced measures, four performance-based measures, and a variety of checklists, surveys, and interviews used to assess ADL performance among Autistic adults. We noted concerns regarding the use of norm-referenced assessments, inclusivity of the assessment tool, and performance factors (e.g., sensory experiences, motor, and emotional), as well as novel concerns associated with the limited availability of measures for older Autistic adults. Recommendations are provided to address these challenges.

Authorship Confirmation Statement

T.K. and E.K.S. contributed to the conceptualization of this perspective piece. E.K.S. conducted the literature review of ADL assessments, reviewed all title and abstracts, and read all full-text articles in detail to develop Supplementary Table S1, Table 1, and the assessment-type section. T.K. formulated the perspective “themes,” completed the subsequent literature review to support our opinions, and read all full-text articles identified to support the remainder of our “themes.” Both T.K. and E.K.S. contributed to the introduction and discussion, with the majority of recommendations being identified by T.K. Both T.K. and E.K.S. have reviewed and approved the submission of this article. This article has been submitted solely to this journal and is not published, in press, or submitted elsewhere.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

No funding was received for this article.

Supplementary Material

Supplementary Table S1