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

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

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Bent, C., Aulich, A., Constantine, C., Fidock, E., Dwyer, P., Green, C. C., Smith, J., Gurba, A. N., Harrington, L. T., Gore, K. E., Rabba, A. S., Ayton, L. N., Fordyce, K., Green, J., Jellett, R., Kennedy, L. J., MacDuffie, K. E., Meera, S. S., Watson, L. R.,..., & Hudry, K. (2024). Autistic and autism community perspectives on infant and family support in the first two years of life: Findings from a community consultation survey. Autism, 29(9), 2282-2296. https://doi.org/10.1177/13623613241262077

Publication date: 30 Jul 2024 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

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Authors

Publication authors
21
Publication authors identified as autistic
5 / 21 (23.8%)
  1. Catherine Bent
  2. Alexandra Aulich
  3. Christos Constantine *
  4. Esther Fidock
  5. Patrick Dwyer *
  6. Cherie C. Green
  7. Jodie Smith
  1. Ava N. Gurba *
  2. Lucas T. Harrington *
  3. Katherine E Gore *
  4. Aspasia Stacey Rabba
  5. Lauren N. Ayton
  6. Kathryn Fordyce
  7. Jonathan Green
  1. Rachel Jellett
  2. Lyndel J Kennedy
  3. Katherine E. MacDuffie
  4. Shoba S. Meera
  5. Linda R. Watson
  6. Andrew Whitehouse
  7. Kristelle Hudry

Abstract

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.Lay abstractMost support programmes for Autistic children are available only after they are diagnosed. Research suggests that parenting supports may be helpful for parents and their infants, when provided in the first 2 years of life - before a formal diagnosis is given, but when information suggests an infant is more likely to be Autistic. However, we do not know how acceptable these types of supports might be to the Autistic and autism communities. We asked 238 Autistic and non-autistic people - some of whom were parents, and some of whom were professionals working in research, health and education - about their perspectives on very-early supports. People generally agreed that it could be acceptable to work with parents to help them understand and support their child's specific needs and unique ways of communicating. People suggested a variety of support strategies could be acceptable, including parent education, changing the environment to meet an infant's needs, and creating opportunities for infants' to make choices and exercise control. People preferred respectful and accurate language - including the term 'support' (rather than 'intervention') and 'early-in-life' (rather than 'at-risk' of autism, or 'pre-emptive' when describing developmental stage). Continuing to work with community members will help to make sure autism support programmes are relevant and helpful.

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 07:50.

Cited references
34
With a DOI
33
Without a DOI, from raw bibliography text
1
14 / 34 (41.2%) cited references include at least one author identified as autistic.
References with data to complete
1 / 34 (2.9%)
References with detected author names
33 / 34 (97.1%)
Without detected author names
1
Without a structured title
1
Without a stable identifier
1
References with raw author names still to review
1
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
194
From DOI or external metadata
194
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
3
140 / 194 (72.2%) names are linked to an author already present in AutiHub. 54 / 194 (27.8%) names are not yet linked.
Names linked to a person identified as autistic
22 / 194 (11.3%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 22 / 140 (15.7%). Distinct people identified as autistic: 18 / 165 (10.9%).
  1. Gauri Divan , Vivek Vajaratkar , Miraj U. Desai , Luisa Strik‐Lievers , Vikram Patel (2012). Challenges, Coping Strategies, and Unmet Needs of Families with a Child with A utism Spectrum Disorder in G oa, I ndia . Autism Research, 5(3), 190-200. Wiley.
    Type: Article DOI: 10.1002/aur.1225 OpenAlex: https://openalex.org/W1484239003
    Crossref OpenAlex OpenCitations
  3. Lauren H Hampton , Elizabeth M Rodriguez (2022). Preemptive interventions for infants and toddlers with a high likelihood for autism: A systematic review and meta-analysis . Autism, 26(6), 1364-1378. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211050433 OpenAlex: https://openalex.org/W3207186816
    Crossref OpenAlex OpenCitations
  4. Enola K. Proctor , John Landsverk , Gregory Aarons , David Chambers , Charles Glisson , Brian Mittman (2009). Implementation Research in Mental Health Services: an Emerging Science with Conceptual, Methodological, and Training challenges . Administration and Policy in Mental Health and Mental Health Services Research, 36(1), 24-34. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10488-008-0197-4 OpenAlex: https://openalex.org/W2097206783
    Crossref OpenAlex OpenCitations
  6. Mei L. Law , Jatinder Singh , Mathilde Mastroianni , Paramala Santosh (2022). Parent-Mediated Interventions for Infants under 24 Months at Risk for Autism Spectrum Disorder: A Systematic Review of Randomized Controlled Trials . Journal of Autism and Developmental Disorders, 52(6), 2553-2574. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-021-05148-9 OpenAlex: https://openalex.org/W3181226634
    Crossref OpenAlex OpenCitations
  7. Katherine E Pickard , Allison L Wainer , Kathryn M Bailey , Brooke R Ingersoll (2016). A mixed-method evaluation of the feasibility and acceptability of a telehealth-based parent-mediated intervention for children with autism spectrum disorder . Autism, 20(7), 845-855. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315614496 OpenAlex: https://openalex.org/W2253221248
    Crossref OpenAlex OpenCitations
  9. Mandeep Sekhon , Martin Cartwright , Jill J. Francis (2017). Acceptability of healthcare interventions: an overview of reviews and development of a theoretical framework . BMC Health Services Research, 17(1), 88. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s12913-017-2031-8 OpenAlex: https://openalex.org/W2582406074
    Crossref OpenAlex OpenCitations
  10. Simon Bury , Rachel Jellett , Jennifer R. Spoor , Darren Hedley (2023). “It Defines Who I Am” or “It’s Something I Have”: What Language Do [Autistic] Australian Adults [on the Autism Spectrum] Prefer? Journal of Autism and Developmental Disorders, 53(2), 677-687. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-020-04425-3 OpenAlex: https://openalex.org/W3007056653
    Crossref OpenAlex OpenCitations
  12. Laurent Mottron (2017). Should we change targets and methods of early intervention in autism, in favor of a strengths-based education? European Child & Adolescent Psychiatry, 26(7), 815-825. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s00787-017-0955-5 OpenAlex: https://openalex.org/W2587703740
    Crossref OpenAlex OpenCitations
  13. Géraldine Dawson , Lauren Franz , Sam Brandsen * (2022). At a Crossroads—Reconsidering the Goals of Autism Early Behavioral Intervention From a Neurodiversity Perspective . JAMA Pediatrics, 176(9), 839. American Medical Association (AMA).
    Type: Article DOI: 10.1001/jamapediatrics.2022.2299 OpenAlex: https://openalex.org/W4285024688
    Crossref OpenAlex OpenCitations
  15. Caroline Joyce , Emma Honey , Susan Leekam , Sarah L. Barrett , Jacqui Rodgers (2017). Anxiety, Intolerance of Uncertainty and Restricted and Repetitive Behaviour: Insights Directly from Young People with ASD . Journal of Autism and Developmental Disorders, 47(12), 3789-3802. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3027-2 OpenAlex: https://openalex.org/W2589756919
    Crossref OpenAlex OpenCitations
  16. Jonathan Green , Andrew Pickles , Greg Pasco , Rachael Bedford , Ming Wai Wan , Mayada Elsabbagh et al. (2017). Randomised trial of a parent‐mediated intervention for infants at high risk for autism: longitudinal outcomes to age 3 years . Journal of Child Psychology and Psychiatry, 58(12), 1330-1340. Wiley.
    Type: Article DOI: 10.1111/jcpp.12728 OpenAlex: https://openalex.org/W2605716357
    Crossref OpenAlex OpenCitations
  17. (n.d.). Dwyer P. Harrington L. Gurba A. (2021 October 22). About that study on ‘preventing’ autism diagnoses and how autism researchers can do better. Thinking person’s guide to autism. Thinking Person’s Guide to Autism. https://thinkingautismguide.com/2021/10/on-study-about-preventing-autism-diagnoses.html
    Type: Other
    Crossref
  18. Jonathan Green (2022). Autism as emergent and transactional . Frontiers in Psychiatry, 13, 988755-988755. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyt.2022.988755 OpenAlex: https://openalex.org/W4303431894
    Crossref OpenAlex OpenCitations
  19. Andrea McGlade , Koa Whittingham , Jacqui Barfoot , Leisa Taylor , Roslyn N. Boyd (2023). Efficacy of very early interventions on neurodevelopmental outcomes for infants and toddlers at increased likelihood of or diagnosed with autism: A systematic review and meta‐analysis . Autism Research, 16(6), 1145-1160. Wiley.
    Type: Article DOI: 10.1002/aur.2924 OpenAlex: https://openalex.org/W4363646099
    Crossref OpenAlex OpenCitations
  20. Wendy L. Stone , Lisa V. Ibanez , Pascale Carpentier , Elyanah Posner , Alice Bravo , Lindsay Frederick et al. (2021). Early Intervention Providers’ Perspectives About Working with Families of Toddlers with Suspected ASD: A Qualitative Study . Journal of Autism and Developmental Disorders, 51(3), 814-826. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-04337-x OpenAlex: https://openalex.org/W2994832309
    Crossref OpenAlex OpenCitations
  21. Jonathan Green (2023). Debate: Neurodiversity, autism and healthcare . Child and Adolescent Mental Health, 28(3), 438-442. Wiley.
    Type: Article DOI: 10.1111/camh.12663 OpenAlex: https://openalex.org/W4384025431
    Crossref OpenAlex OpenCitations
  23. Arianna Manzini , Emily Jones , Tony Charman , Mayada Elsabbagh , Mark H. Johnson , Ilina Singh (2021). Ethical dimensions of translational developmental neuroscience research in autism . Journal of Child Psychology and Psychiatry, 62(11), 1363-1373. Wiley.
    Type: Article DOI: 10.1111/jcpp.13494 OpenAlex: https://openalex.org/W3176566720
    Crossref OpenAlex OpenCitations
  25. Katherine E. MacDuffie , Annette M. Estes , Holly L. Peay , John R. Pruett , Benjamin S. Wilfond (2021). The Ethics of Predicting Autism Spectrum Disorder in Infancy . Journal of the American Academy of Child & Adolescent Psychiatry, 60(8), 942-945. Elsevier BV.
    Type: Article DOI: 10.1016/j.jaac.2021.01.006 OpenAlex: https://openalex.org/W3122724040
    Crossref OpenAlex OpenCitations
  27. Lucie Jurek , Kathy Leadbitter , Bruno Falissard , Cyrille Colin , Sandrine Touzet , Marie-Maude Geoffray (2023). Parental experience of parent-mediated intervention for children with ASD: A systematic review and qualitative evidence synthesis . Autism, 27(3), 647-666. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221112204 OpenAlex: https://openalex.org/W4288084639
    Crossref OpenAlex OpenCitations
  29. Qi Wei , Wendy Machalicek , Jinlan Zhu (2023). Treatment Acceptability for Interventions Addressing Challenging Behavior Among Chinese Caregivers of Children with Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 53(4), 1483-1494. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-021-05196-1 OpenAlex: https://openalex.org/W3183346895
    Crossref OpenAlex OpenCitations
  34. Andrew Whitehouse (2023). Commentary: A spectrum for all? A response to Green et al. (2023), neurodiversity, autism and health care . Child and Adolescent Mental Health, 28(3), 443-445. Wiley.
    Type: Article DOI: 10.1111/camh.12666 OpenAlex: https://openalex.org/W4383999414
    Crossref OpenAlex OpenCitations