The process of co‐design for a new anxiety intervention for autistic children

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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Cullingham, T., Rennard, U., Creswell, C., Milton, D., Buckle, K. L., Godber, L., Gordon, K., Larkin, M., & Green, J. (2024). The process of co‐design for a new anxiety intervention for autistic children. JCPP Advances, 5(2), e12255-e12255. https://doi.org/10.1002/jcv2.12255

Publication date: 13 Aug 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
9
Publication authors identified as autistic
2 / 9 (22.2%)
  1. Tasha Cullingham
  2. Una Rennard
  3. Cathy Creswell
  4. Damian Milton *
  5. Karen Leneh Buckle *
  1. Lucie Godber
  2. Kate Gordon
  3. Michael Larkin
  4. Jonathan Green

Abstract

Background: Mental health difficulties are common for autistic people; however, almost no interventions have been co-designed with the autistic community. Co-design has the potential to add important insights from lived experience into intervention design, but there are currently limited examples of how rigorously to undertake this practice. This paper details a worked model of co-design and its process, focussed on adapting an evidenced parent-led intervention for non-autistic child anxiety (HYC), to meet the needs of young autistic children. The aim is to provide an example of co-design, integrating autistic, parental, academic, clinical, experience and expertise. Methods: Using prior literature and theory, including Experience-Based Co-Design, we developed an iterative and collaborative process between the research team and an expert reference group (ERG). The research team comprised autistic and non-autistic members. The ERG included parents (autistic and non-autistic) of autistic children with anxiety problems, autistic adults with experience of anxiety problems, and clinicians with experience supporting autistic children with anxiety problems. The ERG and research team reviewed information from qualitative research interviews with autistic children with anxiety problems and their parents along with information from clinical experience and the academic literature to reach consensus on the adapted intervention design. Results: The creation of a truly co-designed intervention that includes a neurodiversity-affirmative perspective, alongside CBT techniques. With anxiety problems experienced by autistic children being framed by combining the impacts of being neurodivergent in a neurotypical world, developmental science and well known cognitive behavioural models of child-anxiety. Conclusion: Co-design can help to integrate multiple perspectives and result in the creation of interventions that are potentially relevant and acceptable to autistic people, their family members, and clinicians.

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 07:53.

Cited references
36
With a DOI
32
Without a DOI, from raw bibliography text
4
10 / 36 (27.8%) cited references include at least one author identified as autistic.
References with data to complete
0 / 36 (0.0%)
References with detected author names
36 / 36 (100.0%)
Without detected author names
0
Without a structured title
0
Without a stable identifier
3
References with raw author names still to review
0
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
206
From DOI or external metadata
206
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
111 / 206 (53.9%) names are linked to an author already present in AutiHub. 95 / 206 (46.1%) names are not yet linked.
Names linked to a person identified as autistic
32 / 206 (15.5%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 32 / 111 (28.8%). Distinct people identified as autistic: 28 / 177 (15.8%).
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