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Nothing about us without us: the importance of local collaboration and engagement in the global study of autism

  • Rosa A. Hoekstra (a1), Fikirte Girma (a2), Bethlehem Tekola (a3) and Zemi Yenus (a4)

Abstract

Our current understanding of autism and other developmental disorders is primarily based on research conducted in high-income countries, predominantly in North America and Europe. Even within high-income countries, White participants are overrepresented in autism research. There is now increased recognition that a more global and diverse research representation is warranted. This paper argues that in order for global and diverse research efforts to be effective, it is essential to collaborate and engage with local experts and stakeholders, including local researchers, clinicians and representatives from governmental and non-governmental organisations. Such collaborations ensure that studies use culturally appropriate methods and materials, and that research findings are interpreted taking local context into account. Ultimately, these collaborations build local capacity and foster the development of culturally and contextually appropriate interventions that address locally perceived needs. The adage ‘nothing about us without us’ is vital to global autism research.

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This is an Open Access article, distributed under the terms of the Creative Commons Attribution-NonCommerical-NoDerivatives licence (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is unaltered and is properly cited. The written permission of Cambridge University Press must be obtained for commercial re-use or in order to create a derivative work.

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Nothing about us without us: the importance of local collaboration and engagement in the global study of autism

  • Rosa A. Hoekstra (a1), Fikirte Girma (a2), Bethlehem Tekola (a3) and Zemi Yenus (a4)

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Nothing about us without us: the importance of local collaboration and engagement in the global study of autism

  • Rosa A. Hoekstra (a1), Fikirte Girma (a2), Bethlehem Tekola (a3) and Zemi Yenus (a4)
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