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Purpose <p>National autism guidance increasingly shapes diagnostic practices and service pathways, yet comparative research has focused primarily on clinical content and methodological quality rather than the governance structures through which guidance is produced. We argue that differences in autism guidance are influenced not only by clinical recommendations but also by governance structure, lived-experience participation, and implementation architecture. This study examines how autism guidance is commissioned, who participates in development, and how guideline processes are linked to implementation across six countries: Australia, England, Norway, Scotland, Sweden, and the United States.</p> Methods <p>Using qualitative comparative document analysis, publicly available guideline documents and associated methodological materials were examined to assess each country’s guideline authority, document function and scope, procedural transparency, lived-experience participation, implementation linkages, and relationship to broader national autism strategy. Participation was categorized along a spectrum from consultation to representation to co-production.</p> Results <p>The analysis reveals substantial cross-national variation in how authority, participation, and implementation are structured within national autism guidance systems. Countries with centralized guideline authorities documented the most formalized mechanisms for incorporating lived-experience perspectives, while distributed or consultation-based models afforded less formal influence. Procedural transparency was generally high where centralized bodies existed but variable in distributed systems. Implementation linkages ranged from formal quality standards, indicators, and national strategy alignment to informal regional adoption.</p> Conclusion <p>These governance differences are not fully captured by existing appraisal tools such as AGREE II. The findings provide a descriptive foundation for future research examining how governance arrangements influence autism guidance implementation, legitimacy, and impact.</p>

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Who Shapes National Autism Guidance? A Cross-National Comparison of Autism Guideline Development, Representation, and Implementation

  • 期刊论文

  • 出版模式：

    开放获取

  • 发表日期：

    2026年6月27日

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  • Caleb P. Hwang,
  • Roald A. Øien,
  • Fred R. Volkmar

摘要

Purpose

National autism guidance increasingly shapes diagnostic practices and service pathways, yet comparative research has focused primarily on clinical content and methodological quality rather than the governance structures through which guidance is produced. We argue that differences in autism guidance are influenced not only by clinical recommendations but also by governance structure, lived-experience participation, and implementation architecture. This study examines how autism guidance is commissioned, who participates in development, and how guideline processes are linked to implementation across six countries: Australia, England, Norway, Scotland, Sweden, and the United States.

Methods

Using qualitative comparative document analysis, publicly available guideline documents and associated methodological materials were examined to assess each country’s guideline authority, document function and scope, procedural transparency, lived-experience participation, implementation linkages, and relationship to broader national autism strategy. Participation was categorized along a spectrum from consultation to representation to co-production.

Results

The analysis reveals substantial cross-national variation in how authority, participation, and implementation are structured within national autism guidance systems. Countries with centralized guideline authorities documented the most formalized mechanisms for incorporating lived-experience perspectives, while distributed or consultation-based models afforded less formal influence. Procedural transparency was generally high where centralized bodies existed but variable in distributed systems. Implementation linkages ranged from formal quality standards, indicators, and national strategy alignment to informal regional adoption.

Conclusion

These governance differences are not fully captured by existing appraisal tools such as AGREE II. The findings provide a descriptive foundation for future research examining how governance arrangements influence autism guidance implementation, legitimacy, and impact.