A longitudinal study identifying psychological and service delivery targets to improve daily living skills and quality of life outcomes among transition-age autistic youth
Project Number5R01MH133838-02
Contact PI/Project LeaderYERYS, BENJAMIN Other PIs
Awardee OrganizationCHILDREN'S HOSP OF PHILADELPHIA
Description
Abstract Text
PROJECT ABSTRACT
Approximately 1 million autistics will turn 18 in the next decade, many without the skills they need to achieve the
quality-of-life that they and their families’ desire. Without effective supports, autistic youth struggle with daily
living skills, regardless of their intellectual abilities. Daily living skills are fundamental to independence, paid
employment, and better quality-of-life for autistic adults. Existing daily living skill interventions for this age group
have only modest effects or show poor generalization to real world settings. Current treatments rely on explicit
instruction of specific daily living skills (e.g., the steps for taking a shower), and they lack inclusion of mutable
psychological factors that support the development and generalization of daily living skills. Treatments are further
limited by inadequate knowledge of how social determinants of health (e.g., family income, community
resources) contribute to daily living skills. Identification of mutable psychological factors and social determinants
of health driving change in daily living skills for transition-age autistic youth is a vital to improving public health
and social justice. This knowledge will identify pivotal intervention and service delivery targets for improving daily
living skills. Better executive function and self-determination skills are associated with more advanced daily living
skills, and both factors improve with treatment in autism. Our central scientific premise is that interventions for
daily living skills, and the service delivery systems that promote them, will be enhanced with greater knowledge
of psychological and systemic factors that directly impact these skills. Further, enhanced daily living skills will
result in downstream improvements in quality-of-life and productivity. This project will address gaps in our
knowledge with a prospective longitudinal study that evaluates psychological factors that drive change in daily
living skills during the time when autistic youth exit high school (AIM 1), as well as the impact of daily living skills
on quality-of-life (AIM 2). We will also explore the influence of both individual- (e.g., family income) and
neighborhood-level (childhood opportunity index) factors on daily living skills (AIM 3). Finally, there is a general
need for large representative samples (i.e., IQ range, speaking/nonspeaking, sex-assigned-at-birth, gender,
race, ethnicity). The proposed longitudinal study will contain 3 visits (T1: baseline, T2: +1 yr., T3: +2 yrs.; final
N=170). Our recruitment strategy will ensure all participants have at least one timepoint pre- and post-high school
exit. We predict: AIM 1, H1) executive function and self-determination will explain significant variance in
concurrent daily living skills above covariates; AIM 1, H2a,b) executive functioning and self-determination at
baseline will predict daily living skills at T3 and change in daily living skills over time above covariates; AIM 2,
H3a,b) larger increases in daily living skills will predict better objective and subjective quality-of-life and better
change in quality-of-life over time. In AIM 3, we explore both direct and indirect effects of social determinants of
health. This project will generate critical knowledge for enhancing daily living skills interventions and delivery
systems that will improve long-term outcomes for autistic adults and increase equitable access to services.
Public Health Relevance Statement
PROJECT NARRATIVE
The proposed prospective longitudinal study examines mutable psychological factors and social determinants of
health factors that impact the development of daily living skills, and the downstream effect of daily living skills on
quality-of-life for transition-age autistic youth. Autistic advocates have identified daily living skills—self-care,
domestic, community skills—and quality-of-life as top research priorities, and we believe there are 3 major
obstacles for autistic youth building the daily living skills and supports they need to become happy, productive
adults: 1) current daily living skill interventions don’t work well and don’t generalize; 2) autistic people experience
glaring inequities in access to care; and 3) daily living skills are not prioritized in treatment for all autistic
adolescents but should be given their link with quality-of-life. The knowledge generated from this project will
identify psychological factors that can be immediately integrated as targets into existing treatments and critical
social determinants of health to target with policy—providing a foundational path toward improving promoting
independence, happiness, and productivity for autistic adults.
NIH Spending Category
No NIH Spending Category available.
Project Terms
AccountingAddressAdolescenceAdultAdvocateAgeAutomobile DrivingCaregiversChildhoodCognitiveCommunitiesDataDevelopmentDocumentationEmploymentEmployment OpportunitiesEnrollmentEnsureEnvironmental Risk FactorEquityEthnic OriginFamilyGenderHappinessHealth PromotionHealth Services AccessibilityHealth educationHealthcareHomeIncomeIndependent LivingIndividualInstructionInsuranceInterventionKnowledgeLegalLinkLongitudinal StudiesNeighborhoodsOutcomeParticipantPlayPoliciesPrivatizationProductivityPsychological FactorsPublic HealthQuality of lifeRaceResearchResearch PriorityResourcesRoleSamplingSampling BiasesSchoolsSecondary SchoolsSelf CareSelf DeterminationService provisionServicesSiteSocial JusticeSocietal FactorsSocietiesSystemTalentsTeenagersTestingTimeVisitWorkYouthaccess disparitiesadolescent with autism spectrum disorderadult with autism spectrum disorderage groupautism spectrum disorderautisticcaregiver educationcommunity livingemerging adultethnoracialevaporationexecutive functionexperiencegender diversityhigh schoolimprovedindependent self careindexingindividuals with autism spectrum disorderintervention deliverylongitudinal, prospective studynon-verbalpreventpsychologicrecruitservice deliveryservice engagementsexsex assigned at birthskillssocial engagementsocial health determinantstargeted deliverytransition to adulthood
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