Evidence map›Paper›PMID 36941857›Full record

ArticleAutism in adulthood2023

"I'm the Family Ringmaster and Juggler": Autistic Parents' Experiences of Parenting During the COVID-19 Pandemic.

Melanie Heyworth, Simon Brett, Jacquiline den Houting, Iliana Magiati, Robyn Steward, Anna Urbanowicz, Marc Stears, Elizabeth Pellicano

Open access · greenAbstract read
In one paragraph

Article in Autism in adulthood, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.

0numbers the graph read from it
0cells of the map it votes in
12citing papers in PubMed
2.0field-weighted citation impact, top 14% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

12 citing papers in PubMed, 19 citations in OpenAlex.

  1. Article
  2. Article
  3. Article
  4. Article
  5. Article
  6. Article
  7. Article
  8. The Foundations of Autistic Flourishing.Current psychiatry reports · 2023
    Review
  9. Article
  10. Impact of the COVID-19 Pandemic on Autistic Adults: a Scoping Review.Current developmental disorders reports · 2023
    Article
  11. Article
  12. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors at 6 institutions in 2 countries.

Melanie HeyworthMacquarie School of Education, Macquarie University, Sydney, Australia.
Simon BrettMacquarie School of Education, Macquarie University, Sydney, Australia.
Jacquiline den HoutingMacquarie School of Education, Macquarie University, Sydney, Australia.
Iliana MagiatiSchool of Psychological Science, University of Western Australia, Perth, Australia.
Robyn StewardWellcome Trust, London, United Kingdom.
Anna UrbanowiczRMIT University, Melbourne, Australia.ORCID https://orcid.org/0000-0002-7909-4526
Marc StearsSydney Policy Lab, University of Sydney, Sydney, Australia.
Elizabeth PellicanoMacquarie School of Education, Macquarie University, Sydney, Australia.ORCID https://orcid.org/0000-0002-7246-8003
Autism CRC · AUMacquarie University · AURMIT University · AUThe University of Sydney · AUThe University of Western Australia · AUWellcome Trust · GB

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Background: Little is known about autistic parenthood. The literature that exists suggests that autistic parents can find it difficult to manage the everyday demands of parenting and domestic life. While emerging research has also highlighted more positive parenting experiences, greater understanding of autistic parenthood is needed. Objective: This study sought to understand autistic parents' parenting experiences during the initial phase of the COVID-19 pandemic. Methods: Thirty-five Australian autistic parents (95% women) of autistic children (aged 4-25 years) took part in semi-structured interviews designed to elicit their experiences of life during lockdown. We used reflexive thematic analysis using an inductive (bottom-up) approach to identify patterned meanings within the data set. Results: Autistic parents repeatedly spoke of how the lockdown brought some initial relief from the intensity of their usual lives caring for their children. Nevertheless, most autistic parents felt that the "cumulative stress" of trying to juggle everything during lockdown proved very challenging, which eventually took its toll on parents' mental health. Parents were aware that they needed support but found it difficult to reach out to their usual social supports (including autistic friends) for help, and formal supports were virtually nonexistent. Consequently, they felt "very much forgotten." Nevertheless, they described how their connections with their children grew stronger over lockdown as they focused on nurturing their children's "mental health ahead of everything else." Conclusions: Our analysis shows how challenging conventional life can be for autistic parents. Parenting requires grappling with a distinctive set of demands, which are usually partially manageable through the informal supports many autistic parents draw upon. The relative absence of informal supports during the pandemic, however, left them reliant on more formal supports, which were not forthcoming. Research is urgently needed to identify the most effective formal supports for autistic parents, ideally in partnership with autistic parents themselves.

Indexed as

autistic parentingCOVID-19participatory researchsupports and services

Identifiers

PMID36941857
PMCPMC10024268
OpenAlexW4280653010

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

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.