The pandemic paradox: a mixed methods participatory approach to understanding autistic adults’ experiences during COVID-19

This publication is included in the Autistic Autism Scholarship Project. two authors of this publication are identified as autistic in the project.

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Lowe, J., Jones, S. C., & Mizzi, S. (2024). The pandemic paradox: a mixed methods participatory approach to understanding autistic adults’ experiences during COVID-19. Disability & Society, 40(9), 2517-2538. https://doi.org/10.1080/09687599.2024.2439973

Publication date: 20 Dec 2024 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
3
Publication authors identified as autistic
2 / 3 (66.7%)
  1. Jennifer Lowe *
  2. Sandra C. Jones *
  3. Simone Mizzi

Abstract

Although researchers have attempted to understand the lived experiences of autistic adults during the COVID-19 pandemic, existing studies have noted a lack of participatory research. Adopting a truly participatory approach, two autistic researchers led this study alongside an autism advisory panel established to guide the national online survey from inception to the dissemination of results. The autistic community identified six domains of importance: (1) social connectedness, (2) community participation, (3) support needs, (4) educational outcomes, (5) learning experiences, and (6) employment. A convergent mixed methods design resulted in the largest representation of autistic adults’ experiences during the COVID-19 pandemic to date (N = 951). An integrated and narrated synopsis of autistic adults’ lived experiences revealed the paradoxical nature of public health measures as increasing and decreasing wellbeing, potential issues with the accuracy of proxy reports, and demographic differences. Improvements in education and approaches to learning are recommended for further exploration.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 17:07.

Cited references
65
With a DOI
53
Without a DOI, from raw bibliography text
12
17 / 65 (26.2%) cited references include at least one author identified as autistic.
References with data to complete
10 / 65 (15.4%)
References with detected author names
55 / 65 (84.6%)
Without detected author names
10
Without a structured title
10
Without a stable identifier
11
References with raw author names still to review
10
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
292
From DOI or external metadata
292
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
10
165 / 292 (56.5%) names are linked to an author already present in AutiHub. 127 / 292 (43.5%) names are not yet linked.
Names linked to a person identified as autistic
34 / 292 (11.6%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 34 / 165 (20.6%). Distinct people identified as autistic: 27 / 256 (10.5%).
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