“Constantly overwhelmed and desperate for help”: Parents’ experiences of supporting their autistic child with mental health difficulties in the United Kingdom

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Ashworth, E., Bray, L., Hanlon, C., Pavlopoulou, G., Moore, D., Donaghy, B., Coen, E., Stanway, H., & Firth, E. (2025). “Constantly overwhelmed and desperate for help”: Parents’ experiences of supporting their autistic child with mental health difficulties in the United Kingdom. PLOS Mental Health, 2(9), e0000377. https://doi.org/10.1371/journal.pmen.0000377

Publication date: 22 Sep 2025 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
9
Publication authors identified as autistic
1 / 9 (11.1%)
  1. Emma Ashworth
  2. Lucy Bray
  3. Claire Hanlon
  4. Georgia Pavlopoulou
  5. David Moore
  1. Bethany Donaghy *
  2. Elizabeth Coen
  3. Harvey Stanway
  4. Ellen Firth

Abstract

Autistic children and young people are at increased risk of experiencing mental health difficulties, but often face delays or barriers to accessing support. While evidence exists regarding parents' experiences of supporting an autistic child, there is a lack of focus on parenting autistic children who are also experiencing mental health difficulties. This is despite the high likelihood of co-occurrence, the increased complexity this can bring, and the potential impact on the parents and their children. Thus, the present study aimed to explore parents' experiences of supporting their autistic child with mental health difficulties in the United Kingdom (UK). Mixed-methods surveys were completed by 300 parents/carers of autistic children who had previously sought help for their child's mental health difficulties. Qualitative data were extracted from open-text questions pertaining to parents' perceived impact of their children's mental health difficulties on all aspects of their life. Data were analysed using reflexive thematic analysis. Three themes, along with associated subthemes, were identified, namely 1) Deteriorating parental wellbeing, 2) The knock-on effect on the whole family, and 3) A lack of support. Findings underscore the significant challenges faced by parents, as they were often left to manage their child's deteriorating mental health without sufficient professional support. The emotional and physical toll on parents was thought to be exacerbated by long waiting times, inadequate support services, and a lack of understanding of autism within healthcare and educational systems. There is an urgent need for more neuroaffirmative, personalised approaches to supporting autistic children and their families, along with timely access to effective interventions. By ensuring earlier intervention and reducing systemic barriers, both the mental health of children and the wellbeing of their families can be significantly improved, ultimately fostering better outcomes for all involved.

Bibliography cited by this reference

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These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
36
Total cited references integrated for this publication.
Cited references with an identified autistic author
3 / 36 (8.3%)
Cited author occurrences identified as autistic
5 / 152 (3.3%)
Among occurrences linked to AutiHub author records: 5 / 60 (8.3%). Distinct cited authors identified as autistic: 4 / 142 (2.8%).
Cited author occurrences linked to AutiHub author records
60 / 152 (39.5%)
Distinct linked cited authors: 50 / 142 (35.2%)
Linked cited-author occurrences not identified as autistic
55 / 60 (91.7%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 55 / 152 (36.2%). Distinct linked cited authors not identified as autistic: 46 / 50 (92.0%).
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