Using GPS and Self-Report Data to Examine the Relationship Between Community Mobility and Community Participation Among Autistic Young Adults.

IMPORTANCE: Community participation of autistic adults is important for health and well-being. Many clinical efforts and interventions aim to enhance community participation in this population. OBJECTIVE: To empirically examine the relationship between community participation and community mobility. DESIGN: A randomized controlled trial using data from baseline and 4- to 6-wk follow-up. SETTING: Community organizations serving autistic adults in Philadelphia. PARTICIPANTS: Sixty-three autistic young adults with data on community mobility and participation from a prior study on public transportation use. OUTCOMES AND MEASURES: Participants were tracked with GPS-enabled cell phones over a 2-wk period. A spatiotemporal data mining algorithm was used to compute the total number of destinations, nonhome destinations, unique destinations, percentage of time spent outside the home, and median daily activity space area from the GPS data. The Temple University Community Participation measure was used to collect self-report data in 21 different areas, and total amount, breadth, and sufficiency of participation were calculated. RESULTS: Moderate and statistically significant associations were found between community mobility and participation variables at baseline and follow-up. However, changes in community mobility were not related to changes in community participation. CONCLUSION: Health policymakers and providers should consider community mobility as a factor that can affect community participation in autistic individuals. Plain-Language Summary: Lower levels of community participation among autistic young adults affect health outcomes and overall quality of life. Community mobility is often a barrier to community participation. An understanding of the relationship between community mobility and community participation can lead to occupational therapists tailoring specific interventions and policies that support autistic young adults to engage in important life activities within the community.

Community Participation Challenges for Young Adults with Autism Spectrum Disorders During COVID-19 A Photovoice Study.

Autistic Individuals with or without co-occurring Mental Health Conditions Experience Challenges with Community Participation that can Affect Quality of life. These Challenges Involve, but are not Limited to, Transportation, Finances, Accessibility, Attitude towards Participation, and Infrastructure Issues. COVID-19 Added a new Layer of Community Participation Barriers for all Individuals, Especially Autistic Individuals. The purpose of this study is to understand the perceived community participation barriers and facilitators encountered by autistic individuals during a public health crisis using the Photovoice methodology. The study will compare these perceptions of autistic individuals with and without co-occurring mental health conditions during a public health crisis to determine if any distinctions can be determined. Photovoice, an established qualitative outreach methodology, was the foundation for the methods. Participants completed a narrative answering the question "what is a barrier or facilitator to your community participation?" Data were analyzed using grounded theory. Seventeen autistic participants with a mean age of 23 completed the Photovoice study. Eleven (65%) reported at least one co- occurring mental health condition. Data analysis resulted in two major themes COVID-19 and Transportation; and six subthemes access, safety, technology, leisure, shared experiences, and sensory. Autistic individuals with and without co-occurring mental health conditions chose to identify barriers more than facilitators. Participants without co-occurring mental health conditions viewed COVID-19 as a facilitator almost twice as often as those without. Participants with co-occurring mental health conditions reported transportation more as a barrier than those without. In this study conducted during COVID-19 regulations, autistic individuals identified COVID-19 and transportation as the primary barriers to community participation. COVID-19 was identified as both a barrier and a facilitator. Autistic individuals identified that COVID-19 enabled more on-line participation. Autistic individuals with co-occurring mental health conditions can experience a greater increase in symptoms when daily routines and participation are affected. Disruption and changes in participation for the autistic community during the COVID-19 pandemic can have future implications on this population's ability to reintroduce themselves into community participation. Identified facilitators; technology, shared experiences, and leisure are useful tools to combat the participation barriers.

Interventions for Work/Employment Participation for Autistic Adults (2013-2020).

Systematic Review Briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each Systematic Review Brief summarizes the evidence on a theme related to a systematic review topic. This Systematic Review Brief presents findings on work/employment interventions and participation outcomes for autistic1 adults.

Interventions for Social Participation for Autistic Adults (2013-2020).

Systematic Review Briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each Systematic Review Brief summarizes the evidence on a theme related to a systematic review topic. This Systematic Review Brief presents findings on social participation interventions and participation outcomes for autistic1 adults.

Developing and evaluating a toolkit of strategies to support remote inclusive research teams.

Research teams must collaborate with people with intellectual and developmental disabilities to identify effective and inclusive responses to the COVID-19 pandemic and other public health emergencies. Collaborating remotely requires telecommunication and other technologies. We designed and evaluated a digital "Toolkit for Remote Inclusive Research" to provide research teams with evidence-informed strategies to make remote research accessible to and inclusive of people with intellectual and developmental disabilities. First, we completed a rapid scoping review to identify technology used by people with intellectual and developmental disabilities on collaborative research teams. Second, we designed a digital toolkit featuring 23 strategies identified in the review. Third, six inclusive researchers evaluated the toolkit. We illustrate how our team used these evidence-informed strategies during the past year to develop this and other tools to support inclusive research.

Psychometric Evaluation of the Parent Effort Scale.

Objective: The Parent Effort Scale (PES) is a parent report questionnaire designed to quantify the level of effort required of caregivers to assist their children in developmentally appropriate home- and community-based activities. This manuscript describes the psychometric evaluation of the PES. Method: Data collected from 304 parents of children ages 2-7 years (167 parents of a children with autism spectrum disorder and 137 parents of neurotypical children) were factor analyzed, calibrated using item response theory, and evaluated for construct validity. Results: The final PES scales are reliable and valid measures of the level of parental effort required to assist children in dressing, personal hygiene, sleep, socialization at home, participation in community events, and access to healthcare. A total score reflects overall parental effort. Conclusion: The PES can be used to plan and evaluate the effectiveness of interventions that aim to help parents enhance children's participation opportunities and thus, support their cognitive and social development.

How people with intellectual and developmental disabilities on collaborative research teams use technology: A rapid scoping review.

BACKGROUND: We conducted a rapid scoping review to identify how inclusive research teams use technology during the research process that could support remote collaboration during public health emergencies like the COVID-19 pandemic. METHOD: We searched three databases and conducted a hand search. Two independent reviewers screened 1498 abstracts and titles for inclusion criteria; 81 full text articles were further reviewed; 47 were included. We extracted information about each type of technology, categorised technology used during the research process, and documented described accommodations. RESULTS: We identified 47 articles and 94 examples of technologies used by people with intellectual and developmental disabilities throughout the research process: team formation and team function (38), data collection (19), data analysis (17) and dissemination (20). CONCLUSIONS: Technology use by team members with intellectual and developmental disabilities demonstrates promise for remote research collaborations during public health and climate emergencies and teams with members living in diverse locations.

Impact of COVID-19 on Community Participation and Mobility in Young Adults with Autism Spectrum Disorders.

Transportation and mobility for community participation is difficult for persons with Autism Spectrum Disorders (ASD) under normal circumstances, but the impact of COVID-19 made access even more challenging. Researchers used a single-subject design to examine patterns of change from before and after the COVID-19 pandemic in community mobility and participation as measured by GPS and daily participation questionnaires. Participants were young adults with ASD between the ages of 21 and 27 (4 males, 2 females) who were enrolled in a subsequent study. Community mobility and participation decreased for all participants in both essential and non-essential activities. Additionally, the number of trips for participants decreased substantially in the after COVID-19 periods, as did the variability in modes of transit.

Psychometric Evaluation of the Participation and Sensory Environment Questionnaire-Home Scale (PSEQ-H).

IMPORTANCE: The impact of sensory processing challenges on occupational participation is underrepresented by existing measurement tools even though these outcomes are highly prioritized by families. The Participation and Sensory Environment Questionnaire-Home Scale (PSEQ-H) is a parent-report assessment designed to evaluate the impact of the sensory environment on young children's participation in home-based activities. OBJECTIVE: To describe the psychometric evaluation of the PSEQ-H, including the tool's structural validity; item difficulty, discrimination, and bias; reliability; and construct validity. DESIGN: Psychometric field study. SETTING: Community. PARTICIPANTS: Three hundred four parents of children ages 2-7 yr (167 parents of children with autism spectrum disorder). METHOD: Parent-report PSEQ-H data were factor analyzed, calibrated using Item Response Theory, and evaluated for construct validity. RESULTS: The final PSEQ-H is a reliable and valid 15-item parent-report measure of the sensory environment's impact on children's dressing, self-care, sleep, and social and play activities. CONCLUSIONS AND RELEVANCE: The PSEQ-H can be used to plan and evaluate the effectiveness of interventions for reducing the impact of the sensory environment on children's participation in home-based tasks and activities. WHAT THIS ARTICLE ADDS: The PSEQ-H measures how young children's sensory environments influence their participation at home. The measure can be used to plan and evaluate occupational therapy interventions that aim to reduce sensory processing-related barriers to children's completion of developmentally salient activities.

Effectiveness of Noise-Attenuating Headphones on Physiological Responses for Children With Autism Spectrum Disorders.

Objective: The purpose of this study was to evaluate the proof of concept of an intervention to decrease sympathetic activation as measured by skin conductivity (electrodermal activity, EDA) in children with an autism spectrum disorder (ASD) and auditory hypersensitivity (hyperacusis). In addition, researchers examined if the intervention provided protection against the negative effects of decibel level of environmental noises on electrodermal measures between interventions. The feasibility of implementation and outcome measures within natural environments were evaluated. Method: A single-subject multi-treatment design was used with six children, aged 8-16 years, with a form of Autism (i.e., Autism, PDD-NOS). Participants used in-ear (IE) and over-ear (OE) headphones for two randomly sequenced treatment phases. Each child completed four phases: (1) a week of baseline data collection; (2) a week of an intervention; (3) a week of no intervention; and (4) a week of the other intervention. Empatica E4 wristbands collected EDA data. Data was collected on 16-20 occasions per participant, with five measurements per phase. Results: Separated tests for paired study phases suggested that regardless of intervention type, noise attenuating headphones led to a significance difference in both skin conductance levels (SCL) and frequency of non-specific conductance responses (NS-SCRs) between the baseline measurement and subsequent phases. Overall, SCL and NS-SCR frequency significantly decreased between baseline and the first intervention phase. A protective effect of the intervention was tested by collapsing intervention results into three phases. Slope correlation suggested constant SCL and NS-SCR frequency after initial use of the headphones regardless of the increase in environmental noises. A subsequent analysis of the quality of EDA data identified that later phases of data collection were associated with better data quality. Conclusion: Many children with ASD have hypersensitivities to sound resulting in high levels of sympathetic nervous system reactivity, which is associated with problematic behaviors and distress. The findings of this study suggest that the use of noise attenuating headphones for individuals with ASD and hyperacusis may reduce sympathetic activation. Additionally, results suggest that the use of wearable sensors to collect physiological data in natural environments is feasible with established protocols and training procedures.

Examining Primary Care Health Encounters for Adults With Autism Spectrum Disorder.

OBJECTIVE: Our objective was to identify perceived barriers and strategies to improve primary care encounters, as reported by adults with autism spectrum disorder (ASD), caregivers of adults with ASD, and primary care providers (PCPs) treating adults with ASD. METHOD: As part of a larger mixed-methods design, adults with ASD, caregivers, and PCPs (N = 78) in Los Angeles and Philadelphia completed surveys examining barriers to care and strategies to improve care. RESULTS: Multiple barriers to care were reported by adults with ASD and caregivers, including communication and sensory challenges. Adults with ASD and caregivers reported minimal use of strategies during primary care visits but indicated that those used were helpful during care. Expert PCPs reported using strategies more frequently than novice PCPs. All respondent groups endorsed that strategies had the potential to improve care in the future for adults with ASD. CONCLUSION: Opportunities exist for occupational therapy collaboration in primary health care and primary care education to improve care for adults with ASD.

Reliability of the Participation and Sensory Environment Questionnaire: Community Scales.

BACKGROUND: The Participation and Sensory Environment Questionnaire (P-SEQ): Community Scales is a parent report questionnaire designed to examine the impact of the sensory environment on participation within community activities for children with autism spectrum disorder (ASD). METHODS: This study used a cross sectional quantitative design to establish the reliability and discriminate validity of the P-SEQ: Community Scales. RESULTS: This study established the initial reliability of the questionnaire including internal consistency of 0.98 test-retest reliability of 0.76. The P-SEQ: Community Scales demonstrated significant differences in item distribution for children without ASD as compared to those with ASD, an essential aspect of construct validity. CONCLUSIONS: The results of this study indicate that the questionnaire is a reliable tool that can be used to assess the impact of sensory environment's impact on participation in community activities. Identified barriers can be modified to support participation in community tasks.

Impact of Noise-Attenuating Headphones on Participation in the Home, Community, and School for Children with Autism Spectrum Disorder.

AIM: The purpose of this study was to conceptualize the benefits and limitations of using noise-attenuating headphones for children with autism spectrum disorder (ASD) on participation in home, community, and school environments from the perspective of parents and teachers. METHODS: Grounded theory methodology was used to guide data collection and analysis. Ten parents and five teachers of children with ASD and auditory hypersensitivity aged 6-12 completed recorded interviews. Interviews were transcribed and crosschecked prior to analysis by two or more researchers. Constant comparison was used during open and axial coding followed by theoretical integration. RESULTS: Participants identified that the use of noise-attenuating headphones increased participation in home, community, and school settings. Barriers and benefits were identified for both around-ear and in-ear headphones. Preparation for use was an identified strategy that reduced the barriers and increased use of the headphones. Additionally, many of the children learned to predict when they needed the headphones and requested their use. CONCLUSION: Results of the study identified parental and teacher support for the use of noise-attenuating headphones to increase participation in natural environments for children with ASD, as well as suggestions to facilitate use for practicing physical and occupational therapists.

Caregiver Strategies to Enhance Participation in Children With Autism Spectrum Disorder.

Participation is necessary for childhood development, however, children with disabilities participate in fewer activities than their nondisabled peers. This study identified strategies caregivers use to increase participation in home- and community-based activities for children with autism spectrum disorder. Survey responses of 44 caregivers were analyzed through open and axial coding to develop a central theme and five broad themes. Caregiver strategies which produce a participation outcome fell into five themes: (a) adapters/facilitators, (b) pragmatic considerations, (c) social reframing, (d) sensory adjustments, and (e) desperate measures. Nonproductive strategies were identified where the child did not participate in the activity. Adaptations/facilitators were more likely used in the home, whereas community-based strategies were more often pragmatic considerations. Nonproductive strategies occurred more frequently in the community. When evaluating a child's participation, occupational therapy (OT) practitioners should take into consideration the context of the activity to identify appropriate and helpful strategies.

Brief Report: Reliability of the Participation and Sensory Environment Questionnaire: Home Scales.

The Participation and Sensory Environment Questionnaire: Home Scales (P-SEQ): Home Scales is a parent report tool designed to assess the impact of the sensory environment on participation in daily activities in the home of children with and without autism spectrum disorder. A cross-sectional study was completed to determine internal consistency, test-retest reliability, and examine item distribution. A total of 304 parents of children between the ages of 2 and 7 years of age completed the P-SEQ: Home Scales. Results identified excellent internal consistency (α = 0.96), moderate test-retest reliability (r = .62), and reasonable item distribution. Results suggest that the P-SEQ: Home Scales provides reliable estimates of the impact of the sensory environment on children's participation in home activities.

State of the Science of Sensory Integration Research With Children and Youth.

Many children and youth with and without disabilities are affected by challenges in processing and integrating sensations. Occupational therapy practitioners serve a pivotal role in the evaluation and treatment of this population. This special section of the American Journal of Occupational Therapy includes articles that elucidate the relationship between sensory processing and participation in valued occupations as well as articles that guide best practice, including systematic reviews on common occupational therapy interventions for children and youth with challenges in processing and integrating sensation. This editorial elaborates on key issues for future research.

Effectiveness of Cognitive and Occupation-Based Interventions for Children With Challenges in Sensory Processing and Integration: A Systematic Review.

This systematic review examines the evidence for the effectiveness of cognitive and occupation-based interventions to improve self-regulation in children and youth who have challenges in processing and integrating sensory information. The Preferred Reporting Items for Systematic Reviews and Meta-Analysis guided the methodology. Five studies identified through a comprehensive database search met the inclusion criteria and were separated into categories of cognitive and occupation-based interventions. Articles that did not specifically measure sensory integration (SI) or processing challenges were omitted. Synthesis of the articles suggests that self-regulation (e.g., sensory processing, emotional regulation, executive functioning, social function) improved with cognitive and occupation-based interventions. Because the number of studies that measured sensory processing or SI challenges was limited, researchers are encouraged to include these measures in future research to understand the impact of a broader range of cognitive and occupation-based interventions.

Development and Content Validity of the Participation and Sensory Environment Questionnaire.

Qualitative methodology was used to develop items for a questionnaire designed to examine the perspectives of parents regarding the impact of the sensory environment on participation for children aged 3 to 5 who have autism spectrum disorders (ASD). A total of 34 parents/caregivers of children with ASD and 8 experts in ASD and/or measurement completed qualitative interviews for concept, content review, and cognitive interviewing. The result was a pool of 35 items for home/community domains for 3 scales. The outcome of this study was the development and content validation of the Participation and Sensory Environment Questionnaire (PSEQ).

Reliability of the Participation and Sensory Environment Questionnaire: Teacher Version.

The Participation and Sensory Environment Questionnaire-Teacher Version (PSEQ-TV) is a teacher-report questionnaire to assess the impact of the sensory environment on participation of preschool children with autism spectrum disorder (ASD). Many children with ASD have sensory processing differences, although these differences are frequently examined from the standpoint of the person. The PSEQ-TV provides a single assessment to examine both participation and the sensory environment for preschool aged children with ASD. This study established the reliability of the PSEQ-TV including internal consistency of 0.98 and test-rest reliability of 0.70. The results indicate initial reliability of PSEQ-TV as an instrument that can be used to identify sensory environmental barriers within the preschool setting to target during interventions to increase participation.

Caregivers' Perspectives on the Sensory Environment and Participation in Daily Activities of Children With Autism Spectrum Disorder.

The purpose of this phenomenological study was to obtain caregivers' perspectives on the impact of the sensory environment on participation in daily activities of their young children with autism spectrum disorders (ASD). Interviews were completed with 34 caregivers of children with ASD ages 3-7 yr. Results strongly suggest that parents and caregivers were pivotal in enabling participation for their children through the implementation of specific strategies and a parental decision-making process. The decision-making process considered amount of effort necessary to support participation and whether participation in a given activity was perceived as essential or nonessential. Strategies enabled participation and reduced the effort required to support the child's participation. Strategies either directly related to the sensory factors of the environment or focused on reducing behavioral responses associated with sensory factors. In this study, we identified important considerations to enhance participation in the home and community environments for children with ASD.