Abstract
The findings of this study highlight the valuable role that occupational therapists can play in helping autistic youth to achieve independence as adults by assessing their functional needs and strengths and by providing client-centered interventions.
Almost 30,000 autistic students exited high school with a regular diploma in 2020 (National Center for Education Statistics, 2022). Despite academic strengths, these autistic youth experience challenges with daily activities, interacting with others, and managing multistep life tasks, which can negatively affect their educational and vocational goals in adulthood (Munsell & Coster, 2021). For example, autistic college students often experience challenges in daily living skills and managing their health, which has a negative effect on their academic success (Flegenheimer & Scherf, 2022). To better prepare autistic youth for adulthood, it is important to understand how functional skills and the ability to manage daily tasks change over the transition to adulthood (Meyer et al., 2018).
Research on functional independence among autistic youth has used adaptive behavior measures to assess performance of daily tasks, including self-care and social and communication skills (Sparrow et al., 2016). This research indicates improvements during childhood but a plateau or decline in adolescence and adulthood (Meyer et al., 2018). However, the commonly used assessments, the Vineland Adaptive Behavior Scales–Third Edition (Sparrow et al., 2016) and the Adaptive Behavior Assessment System–Third Edition (Harrison & Oakland, 2015), were developed to diagnose intellectual disability (ID) in combination with intelligence tests, not to examine change over time (Munsell et al., 2022). These measures also focus on concrete functional skills (e.g., using a fork and knife), not the higher level skills needed in adulthood, such as managing complex tasks like preparing food for a week (Munsell et al., 2022).
Because developing self-management skills for daily tasks is necessary for independence in adulthood, it is important to examine the development of functional skills and the ability to take responsibility for organizing and managing tasks at the time of transition to adulthood in the autistic population (Kao et al., 2021). Prior studies examining adaptive behavior among autistic adolescents have emphasized the discrepancies between IQ and adaptive functioning, but they have not examined age-related differences (Alvares et al., 2020; Tamm et al., 2022). Longitudinal studies have focused on younger children or a single domain of functioning, or they have used only normative scores, which may not capture intraindividual change over time (Clarke et al., 2021; Meyer et al., 2018).
The Pediatric Evaluation of Disability Inventory–Computer Adaptive Test (ASD) (PEDI–CAT–ASD; Haley et al., 2019) was developed to measure functional and self-management skills among autistic youth. It has several advantages over traditional adaptive behavior measures. The PEDI–CAT–ASD captures functional performance in two skill domains (Daily Activities, Social/Cognitive) with a rating scale that describes the effort or time spent on a specific task rather than independent performance (Kao et al., 2021). A third domain, Responsibility, captures the extent to which youth assume responsibility for managing daily life tasks (Haley et al., 2019). Each domain takes approximately 10 min to complete using computer adaptive testing.
The current study aimed to describe how functional skills and the ability to manage daily activities change with age, using two analytic approaches: a cross-sectional analysis of age group and a longitudinal analysis. We conducted the cross-sectional analysis so that we could compare the magnitude of any delays in functional and daily task management skills between two age groups. The longitudinal analysis helps to understand autistic youth’s skills development over time. We examined Daily Activities, Social/Cognitive skills, and Responsibility in transition-age autistic youth with the PEDI–CAT–ASD. Understanding age group differences and changes over time in functional skills and self-management of daily life tasks in transition-age youth will provide important information for occupational therapy practitioners working with this population.
Method
Sample
This analysis used data from a recently completed study examining factors related to post–high school outcomes for diploma-track autistic youth. Parent–youth dyads were recruited through school personnel contacts, community agencies, and social media in the United States. Participants were included if the youth was (1) a current high school student, (2) had an autism diagnosis from a professional by parent report, (3) received special education services under the autism disability category (Individuals With Disabilities Education Improvement Act of 2004, Pub. L. 108-446), and (4) expected to graduate with a regular high school diploma. All youth had a score of 15 or higher on the Social Communication Questionnaire–Lifetime version (SCQ–L; Rutter et al., 2003), completed by a parent during a phone screen. Participants with a diagnosis of ID (IQ < 80) or significant physical limitations (e.g., wheelchair use) were excluded.
A sample of 50 autistic high school students and their parents participated at an initial time point (Time 1). Approximately 20 mo later, 34 families participated at a second time point (Time 2). Sample characteristics are presented in Table 1. Most youth and parents lived in a suburban community. Most parent respondents were mothers and had a college degree or higher. Most youth attended public school and spent the majority of their time in the general education setting. Many youth had co-occurring mental health conditions (e.g., anxiety, attention deficit disorder or attention deficit hyperactivity disorder, depression). Most youth received services focused on social and organizational skills; very few received direct occupational therapy services. Youth whose parent completed the PEDI–CAT–ASD at Time 2 ranged in age from 16 to 22 yr (M = 19.72 yr, SD = 1.11).
Demographic Characteristics of Autistic Youth and Parents at Time 1 (N = 50)
One parent did not report.
Pediatric Evaluation of Disability Inventory–Computer Adaptive Test (ASD) normative scores were calculated on the basis of biological sex.
One participant with male sex reported their gender as female.
Procedure
All study procedures were approved by the Charles River Campus Institutional Review Board at Boston University. Autistic youth and their parents provided informed consent or assent for youth younger than age 18 yr. At Time 1, parents reported demographic information and other measures via an online survey. Parents also completed the youth’s functional skills measure (PEDI–CAT–ASD) through a phone and Zoom interview with research staff or independently using the Q-global digital tool (https://qglobal.pearsonclinical.com). Participants received electronic gift cards for completing the measures.
Measures
The PEDI–CAT–ASD is a proxy-report measure of a youth’s functional skills (Daily Activities and Social/Cognitive domains) and ability to manage daily life tasks (Responsibility domain). The PEDI–CAT–ASD is validated for use with autistic individuals ages 0 to 21 yr, with excellent reliability (intraclass correlation coefficient ≥ .86) and concurrent validity with the Vineland Adaptive Behavior Scales–Second Edition (Kramer et al., 2016). The Daily Activities domain includes daily living skills such as eating and household maintenance. The Social/Cognitive domain measures communication, safety, and problem-solving. For these domains, parents rated the youth’s typical performance on a 4-point scale: 1 = unable, 2 = hard, 3 = a little hard, and 4 = easy. The Responsibility domain measures self-management skills that require youth to use several functional skills in combination with each other. Items are rated on a 5-point scale quantifying how much the youth takes responsibility for the task, ranging from caregiver has “full responsibility” (1) to child takes “full responsibility” without any direction (5).
The PEDI–CAT–ASD provides two types of scores: scaled scores and normative T scores; for both, higher scores represent more developed functional skills. Scaled scores track the youth’s current status, and T scores compare their performance with that of same-age nonautistic peers (M = 50, SD = 10). T scores between 30 and 70 are considered within the expected range for age. The Social/Cognitive scaled scores are adjusted for differential item function (Kramer et al., 2015). In this study, parents completed a content-balanced version of the PEDI–CAT–ASD (maximum of 30 items per domain). The PEDI scoring system does not allow any missing data; thus, all scores represent completed items.
Data Analysis
Statistical analyses were conducted with IBM SPSS Statistics (Version 27). PEDI–CAT–ASD scores were reasonably normally distributed, except for the Daily Activities and Social/Cognitive T scores. Given our sample size (≥30) and the advantages of parametric tests (Pallant, 2016; Sullivan, 2018), we conducted independent-samples t tests to compare scores on the PEDI–CAT–ASD domains cross-sectionally between two age groups at Time 1 (14–17 yr vs. 18–20 yr), determined by a median split on age. We then conducted paired-samples t tests with all youth who had PEDI–CAT–ASD scores at both Time 1 and Time 2, regardless of age group, to examine changes in domain scores over time. We also conducted nonparametric statistics and report these results. The significance threshold was set at .05. Effect sizes were interpreted by Cohen’s d for t tests, with 0.2 classified as a small effect, 0.5 as a moderate effect, and ≥0.8 as a large effect (Cohen, 1988). The nonparametric values of r were also indicated using Cohen’s (1988) criteria of 0.1 = small effect, 0.3 = moderate effect, and 0.5 = large effect.
In addition, we examined whether there were differences in baseline characteristics between the two age groups and participants who completed both Time 1 and Time 2. There was no statistically significant difference in youths’ baseline characteristics (SCQ–L, gender, race/ethnicity, mental health condition, time in general education) or parental characteristics (age, race/ethnicity, household income, highest education degree) between the two age groups at Time 1. The only significant demographic difference between the initial sample and those who participated at both time points was that fewer youth who identified as Hispanic/Latino participated at Time 2 (n = 1; 3%) than at Time 1 (n = 4; 27%), χ2(1) = 6.39, p = .011.
Results
Overall Functional Skills and Daily Life Task Management
As shown in Table 2, autistic youths’ highest scaled scores were in the Social/Cognitive domain, followed by the Daily Activities and Responsibility domains. T scores indicated that autistic youth were delayed in the Social/Cognitive and Daily Activities domains compared with same-age peers.
Age-Related Differences in Daily Activities, Social/Cognitive, and Responsibility Domains
Result was reported on the basis of equal variances not assumed, t(34.283).
Result was reported on the basis of equal variances not assumed, t(30.601).
Cross-Sectional Age-Related Differences
Scaled scores did not differ significantly by age group (18–20 yr vs. 14–17 yr) on any domain (Table 2). However, youth ages 18–20 yr had significantly lower T scores on the Social/Cognitive and Responsibility domains than did youth ages 14–17 yr (Cohen’s d ≥ 0.8). Mann–Whitney U tests revealed the same patterns with moderate effect sizes (p < .01, r > .37).
Longitudinal Changes
All youth showed improvements from Time 1 to Time 2 in the Daily Activities and Responsibility domains (scaled scores; see Table 3). The effect sizes were moderate (Daily Activities, Cohen’s d = −0.49) and large (Responsibility; Cohen’s d = −1.03). Participants made gains in Daily Activities T scores over time (Cohen’s d = −0.44). Wilcoxon signed-ranks tests resulted in the same patterns (p < .01, r > .36).
Changes Over Time in Daily Activities, Social/Cognitive, and Responsibility Domains (N = 34)
t(32); t scores could not be calculated for 1 participant age 22 yr.
Discussion
The purpose of this study was to examine functional skills and self-management of daily life tasks among diploma-track autistic youth at the time of transition to adulthood. Overall, autistic youths’ functional and self-management skills fell below those of nonautistic peers across domains. Older youth (ages 18–20 yr) were more delayed than younger youth (ages 14–17 yr) in social/cognitive and self-management skills compared with same-age peers. These findings are consistent with previous research documenting challenges in adaptive behaviors among this population (Tamm et al., 2022; Viezel et al., 2022). Longitudinal analyses, however, indicated that youth gained functional and self-management skills, but not at the same rate as their peers. They showed significant improvements over time on scaled scores in the Responsibility and Daily Activities domains, suggesting that they continued developing these skills during the transition years. Given the significant associations between functional skills and achievement of adult outcomes (Clarke et al., 2021), these findings indicate that it is important to consider functional skills interventions for transition-age autistic students (Munsell & Coster, 2021).
These findings are relevant to the provision of occupational therapy services for this population. Occupational therapists have the requisite skills and background to support continued development of functional and self-management skills for daily tasks among this population given their expertise in maximizing functional performance (Eismann et al., 2017). Many autistic youth in this sample received school-based services focused on social and organizational skills, but few specifically received occupational therapy services. These findings can be used to advocate for the important role of occupational therapy services to prepare autistic youth without ID for adulthood.
Limitations and Future Research
This analysis has several limitations. The sample was relatively small and homogeneous. Future work could use a larger and more diverse sample, and it could extend the descriptive findings to examine factors associated with change over time, including service receipt and family factors. We also did not design this study to examine social, ethnic, and cultural variables related to functional development, which would be important to do in future studies. Also, a self-report version of PEDI was recently validated for transition-age youth with developmental disabilities (Kramer et al., 2021). Future research should incorporate youths’ perspective for a more comprehensive understanding of functional challenges and a client-centered approach (Kramer et al., 2021).
Implications for Occupational Therapy Practice
Functional and self-management skill development is important for adulthood. Occupational therapists can play a valuable role in assisting these students to achieve functional independence by assessing their functional needs and strengths and providing client-centered interventions, including skills training and accommodations (Eismann et al., 2017). Clinicians can use the findings to advocate for proactively addressing functional needs of autistic youth without ID and the role of occupational therapy in this area.
Conclusion
The study findings indicate that diploma-track autistic youth have challenges in functional skills and self-management of daily life tasks compared with nonautistic peers while showing the potential for improvement. Focusing on these youths’ functional needs will enhance their participation in occupations as adults, such as education, employment, and social and community life.
Footnotes
Acknowledgments
We thank the research participants for their time, as well as the members of our community advisory board for their contributions to this study over the years. The research reported here was supported by the Institute of Education Sciences, U.S. Department of Education, through Grant R324A160113 to Boston University. The opinions expressed are those of the authors and do not represent views of the institute or the U.S. Department of Education. These findings were previously presented at the Gatlinburg Conference on Theory and Research in Intellectual and Developmental Disabilities.