Co-production of a Neurodiversity-Affirmative Anxiety Intervention for Autistic Children

medRxiv (Cold Spring Harbor Laboratory)(2023)

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摘要
Background Mental health difficulties are common for autistic people; however, few interventions have been co-produced with the autistic community. Mental health interventions constructed with a ‘non-autistic lens’ likely miss key understandings from autistic experiences and priorities of the autistic community. Additionally, the style and aims of intervention may be prone to unconscious bias around the pathologisation of autism. Currently, there are limited methodological and practical examples of how to rigorously co-produce mental health interventions with autistic people. This paper details the methodology and processes of co-adapting an intervention for autistic children with anxiety problems. Providing a worked example of co-producing a neurodiversity-affirmative mental health intervention which reflects autistic, parental, academic, and clinical, experience and expertise. Methods We co-adapted content from a brief, parent-led, CBT approach for non-autistic children with anxiety problems to meet the needs of autistic children and their parents. The adaptation for autistic children was co-constructed using processes and strategies adopted from Experience-Based Co-Design (EBCD). The research team, comprising autistic and non-autistic members, worked alongside an expert reference group (ERG). The ERG comprised 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 mental health difficulties. Data were obtained from qualitative research interviews with autistic children with anxiety problems and parents. These data were considered reciprocally by the research team and the ERG. Results The resulting intervention includes a neurodiversity-affirmative perspective that considers how anxieties for autistic children can emerge from being neurodivergent in a neurotypical world integrated with traditional CBT techniques and understandings of anxiety. Conclusion Successful co-production can help to integrate multiple theoretical backgrounds and result in the creation of interventions that are potentially acceptable to clinicians, autistic people and their family members. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement This project was funded by the National Institute for Health and Care Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number NIHR203495). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. All experts by experience were paid for their involvement in the work. Pre-grant expert by experience work was funded via an NIHR Research Design Service Patient and Public Involvement grant. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: Manchester Foundation Trust was the sponsor. The project was approved by the HRA (IRAS 307932), and Funded by via NIHR RFPB (NIHR203495) I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes Data is not available due to confidentiality
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关键词
autistic children,anxiety,co-production,neurodiversity-affirmative
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