La Trobe

Autistic and autism community perspectives on infant and family support in the first two years of life: Findings from a community consultation survey

journal contribution
posted on 2025-11-19, 23:35 authored by Catherine BentCatherine Bent, Alexandra AulichAlexandra Aulich, Christos Constantine, Esther Fidock, Patrick DwyerPatrick Dwyer, Cherie GreenCherie Green, Jodie SmithJodie Smith, AN Gurba, LT Harrington, Katherine GoreKatherine Gore, Aspasia Stacey RabbaAspasia Stacey Rabba, LN Ayton, K Fordyce, J Green, Rachel JellettRachel Jellett, Lyndel KennedyLyndel Kennedy, KE MacDuffie, SS Meera, LR Watson, AJO Whitehouse, Kristelle HudryKristelle Hudry
<p dir="ltr">Emerging evidence suggests parenting supports implemented in the first 2 years of life may influence developmental outcomes for infants more likely to be Autistic. Yet questions remain about acceptability of these supports to the Autistic and autism communities. Through mixed-methods participatory research – co-designed and produced by Autistic and non-Autistic researchers – we sought diverse community perspectives on this topic, including to understand the relative acceptability of different support options. A total of 238 participants completed our online survey: 128 Autistic and 110 non-Autistic respondents, some of whom also self-identified as parents of Autistic, otherwise neurodivergent, and/or neurotypical children, and/or as health/education professionals and/or researchers. Most participants agreed that very-early-in-life approaches should help parents understand and support their children, and disagreed that these should seek to suppress autistic behaviour. Most agreed with the goal of respecting infant autonomy, and that parent education towards creating sensitive, accommodating environments could be appropriate, albeit with nuanced differences-of-opinion regarding the acceptability of specific therapeutic approaches. Participants generally endorsed the terms ‘support’ (vs ‘intervention’) and ‘early-in-life’ (vs ‘at-risk’/‘pre-emptive’). Engaging equal-power partnerships for the development, delivery of, and discourse around early-in-life autism supports will ensure end-user community values and needs are respected. </p>

Funding

This project was supported by funding via an International Society for Autism Research (INSAR) Topical Brief and a La Trobe University Early Career Researchers ‘ABC Award’ grant. JG is a UK NIHR Senior Investigator (NF-SI-0617-10168) and funded by the NIHR Manchester Biomedical Research Centre (NIHR203308).

History

Publication Date

2025-09-01

Journal

Autism

Volume

29

Issue

9

Pagination

2282 - 2296

Publisher

Sage

ISSN

1362-3613

Rights Statement

© The Author(s) 2024. This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).

Usage metrics

    Journal Articles

    Exports

    RefWorks
    BibTeX
    Ref. manager
    Endnote
    DataCite
    NLM
    DC