55. COMMUNITY FUNCTIONING AND RELATED SUPPORT NEEDS IN AUTISTIC ADULTS WITH AND WITHOUT GUARDIANSHIP: PHENOTYPIC, GENETIC, AND SOCIAL-ENVIRONMENTAL ASSOCIATIONS

Background Community functioning – living independently, maintaining employment, and building relationships – can vary substantially across autistic adults. While some gain full-time employment and establish a household with their partner, others live in group homes and do not participate in employment or education. Understanding variability in autistic community functioning, along with contributors to this variability, is essential for developing services aligned with individual support needs. However, community functioning has rarely been examined at scale across autistic adults with and without guardianship, in relation to individual genetic or social-environmental exposures, or with space for stakeholder perspectives. Methods Leveraging the SPARK cohort, we analyzed data from 15,145 autistic adults aged 18-64 years, including 4,707 with and 10,438 without legal guardianship. We evaluated community functioning across three domains: employment, daily living (living arrangement), and social (marital status). Guardians reported on behalf of participants with guardianship, while participants without guardianship provided self-report data, including stakeholder perspectives. Participants contributed data for neuropsychiatric phenotypes and social-environmental exposures (e.g., area deprivation index; ADI). From participants’ genetic data, we estimated: a) common polygenic scores (PGS) for cognition, autism, and schizophrenia, and b) rate of disruptive rare variation in genes associated with autism or intellectual disability (neurodevelopmental disability associated variation; NDAV). Results Autistic community functioning was highly heterogeneous and varied by sex, guardianship status, autistic traits, and average etiological exposures. Compared to full-time employment, part-time employment was associated with higher autism PGS and NDAV rate, while either participating in vocational/special education or not participating in work/education was associated with lower cognition PGS, higher schizophrenia PGS, and higher NDAV rate. Average ADI was lower for both students and those in vocational/special education, and higher for those not in work/education. Relative to living with a partner/spouse, living alone/with roommates was associated with higher autism PGS, living with parents/relatives was associated with higher NDAV rate, and living in a group home was associated with higher autism PGS and schizophrenia PGS. Moreover, compared with being married, being either partnered or divorced was associated with lower NDAV rate, whereas being divorced was associated with higher ADI and being single with lower ADI. Autistic stakeholders recognized professional supports for community functioning as priorities for the autistic community, with social supports being the most frequently endorsed priority (∼54%). Underscoring these priorities, distinct profiles of support needs for community functioning tracked with different average burdens of mental health challenges. Discussion In the largest survey to date of the US autistic adult community, community functioning differs by individual phenotypic, genetic, and social-environmental factors, while support needs range from minimal to substantial depending on the domain. Using this information, we are working to identify risk and resilience factors for requiring further support in each domain, towards responding to autistic stakeholders’ calls for prioritizing community functioning support needs.

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Journal
European Neuropsychopharmacology
Published
2026-09-21
DOI
https://doi.org/10.1016/j.euroneuro.2026.113082
Primary Topic
Autism Spectrum Disorder Research
Type
article
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article

55. COMMUNITY FUNCTIONING AND RELATED SUPPORT NEEDS IN AUTISTIC ADULTS WITH AND WITHOUT GUARDIANSHIP: PHENOTYPIC, GENETIC, AND SOCIAL-ENVIRONMENTAL ASSOCIATIONS

Chiara Auwerx, Michael Talkowski, Jack Fu, Taylor Thomas et al.
European Neuropsychopharmacology
Autism Spectrum Disorder Research
article

55. COMMUNITY FUNCTIONING AND RELATED SUPPORT NEEDS IN AUTISTIC ADULTS WITH AND WITHOUT GUARDIANSHIP: PHENOTYPIC, GENETIC, AND SOCIAL-ENVIRONMENTAL ASSOCIATIONS

Chiara Auwerx, Michael Talkowski, Jack Fu, Taylor Thomas, Elise Robinson, Kyle Satterstrom, Susan Kuo
article en

Abstract

Background Community functioning – living independently, maintaining employment, and building relationships – can vary substantially across autistic adults. While some gain full-time employment and establish a household with their partner, others live in group homes and do not participate in employment or education. Understanding variability in autistic community functioning, along with contributors to this variability, is essential for developing services aligned with individual support needs. However, community functioning has rarely been examined at scale across autistic adults with and without guardianship, in relation to individual genetic or social-environmental exposures, or with space for stakeholder perspectives. Methods Leveraging the SPARK cohort, we analyzed data from 15,145 autistic adults aged 18-64 years, including 4,707 with and 10,438 without legal guardianship. We evaluated community functioning across three domains: employment, daily living (living arrangement), and social (marital status). Guardians reported on behalf of participants with guardianship, while participants without guardianship provided self-report data, including stakeholder perspectives. Participants contributed data for neuropsychiatric phenotypes and social-environmental exposures (e.g., area deprivation index; ADI). From participants’ genetic data, we estimated: a) common polygenic scores (PGS) for cognition, autism, and schizophrenia, and b) rate of disruptive rare variation in genes associated with autism or intellectual disability (neurodevelopmental disability associated variation; NDAV). Results Autistic community functioning was highly heterogeneous and varied by sex, guardianship status, autistic traits, and average etiological exposures. Compared to full-time employment, part-time employment was associated with higher autism PGS and NDAV rate, while either participating in vocational/special education or not participating in work/education was associated with lower cognition PGS, higher schizophrenia PGS, and higher NDAV rate. Average ADI was lower for both students and those in vocational/special education, and higher for those not in work/education. Relative to living with a partner/spouse, living alone/with roommates was associated with higher autism PGS, living with parents/relatives was associated with higher NDAV rate, and living in a group home was associated with higher autism PGS and schizophrenia PGS. Moreover, compared with being married, being either partnered or divorced was associated with lower NDAV rate, whereas being divorced was associated with higher ADI and being single with lower ADI. Autistic stakeholders recognized professional supports for community functioning as priorities for the autistic community, with social supports being the most frequently endorsed priority (∼54%). Underscoring these priorities, distinct profiles of support needs for community functioning tracked with different average burdens of mental health challenges. Discussion In the largest survey to date of the US autistic adult community, community functioning differs by individual phenotypic, genetic, and social-environmental factors, while support needs range from minimal to substantial depending on the domain. Using this information, we are working to identify risk and resilience factors for requiring further support in each domain, towards responding to autistic stakeholders’ calls for prioritizing community functioning support needs.

European NeuropsychopharmacologyVol. 111
Broad Institute (US), Massachusetts General Hospital (US)
Openalex Percentile: Top 9%
Autism Spectrum Disorder Research
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