Development of a Conceptual Model of Loneliness in Verbal Autistic Adults Using Qualitative Content Analyses.

Hillary Schiltz, Derica Su, Juliette Lerner, Carla Mazefsky, Catherine Lord

Abstract read

In one paragraph

Article in Journal of autism and developmental disorders, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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1 · What the graph read from it

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4 · The record

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5 · Who and what money

Authors and funding

5 authors.

Hillary SchiltzSemel Institute for Neuroscience and Human Behavior, University of California, Los Angeles, 760 Westwood Plaza, Los Angeles, CA, 90024, USA. hschiltz@mednet.ucla.edu.

Derica SuSemel Institute for Neuroscience and Human Behavior, University of California, Los Angeles, 760 Westwood Plaza, Los Angeles, CA, 90024, USA.

Juliette LernerSemel Institute for Neuroscience and Human Behavior, University of California, Los Angeles, 760 Westwood Plaza, Los Angeles, CA, 90024, USA.

Carla MazefskyDepartment of Psychiatry, University of Pittsburgh, 3811 O'Hara St, Pittsburgh, PA, 15213, USA.

Catherine LordSemel Institute for Neuroscience and Human Behavior, University of California, Los Angeles, 760 Westwood Plaza, Los Angeles, CA, 90024, USA.

Funding

Family caregivers in later life: A longitudinal study of well-being and mental health in families of adults with autism and developmental disabilitiesR01AG080599 · NIA · UNIVERSITY OF CALIFORNIA LOS ANGELES · PI Catherine Lord · 2023 to 2026

$2.6M

Autism Speaks Autism Speaks Postdoctoral FellowshipNIA NIH HHS R01AG080599

6 · The paper itself

Abstract

purposeLoneliness has serious consequences for physical and mental health. Therefore, the high vulnerability of autistic adults to loneliness is concerning (Hymas et al., in: Rev J Autism Dev Disord., 2022. https://doi.org/10.1007/s40489-022-00330-w ). However, foundational questions regarding the operationalization and importance of loneliness to the autistic community remain largely unanswered, and thus were the aims of the current study.

methodsProcedures followed initial steps of the PROMIS (Patient-Reported Outcomes Measurement Information System) guidelines. A preliminary conceptual model of loneliness was developed based on literature in the general population and presented to focus groups and individual interviews involving 13 autistic adults and 5 autism professionals. Transcripts were analyzed using qualitative content analysis.

resultsParticipants indicated that research on loneliness in autistic adults was worthwhile because of the commonality, significant negative impact, need to challenge misconceptions, and identify prevention/intervention strategies. Revisions to an initially proposed conceptual model of loneliness in autism included clarifications (e.g., satisfaction with vs. presence of relationships), modifications (e.g., frequency vs. availability of contact), and additions (e.g., social exhaustion, feelings of difference, and animals).

conclusionOur proposed conceptual model of loneliness in autism identifies key nuances and concepts overlooked by models and measures of loneliness developed for non-autistic populations. These findings underscore the need to improve methods for assessing loneliness among autistic adults.

Indexed as

Autistic adultsConceptual modelLonelinessMeasurement

Identifiers

PMID41091359

DOI10.1111/pere.12397

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.