{
  "abstract": "Background Autism research in low- and middle-income countries (LMIC), including Kenya, is limited, despite growing global prevalence. Surveys are a primary tool used to understand neurodevelopmental disorders, like autism, in LMICs. However, measures supported by studies in high income countries are often not valid for use in LMICs.Objectives This session describes the culturally grounded development process of the Autism in Context of Education-Kenya Survey (ACE-KS) and the results when administered to Kenyan caregivers and teachers of autistic children.Methods To develop the ACE-KS, we blended evidence-centered design, a psychometric framework for designing measurement tools, with community-based participatory research, which emphasizes equitable stakeholder involvement. We administered the ACE-KS to 130 Kenyan caregivers and teachers.Results The ACE-KS measures six constructs. Psychometric analyses indicate construct validity and scale reliability. Findings from the initial administration revealed insights into how autism is perceived among Kenyan caregivers and teachers. While most respondents endorsed scientifically legitimate causes of autism, many identified other causes such as mothers’ exposure to domestic violence, vaccines, and complications during birth. Perceptions varied considerably on appropriate teaching strategies for autistic children. Respondents were evenly split on whether teachers should be responsible for punishing a child with autism.Conclusions Merging evidence-centered design with community-based participatory research traditions can enhance the cultural and contextual validity around autism survey instruments in LMIC. Our work offers a replicable model for researchers aiming to develop participatory, culturally responsive tools for deployment in underrepresented contexts and contributes to efforts to improve autism knowledge and support in LMICs. The research reported in the abstract was made possible by a grant from the Spencer Foundation (#202400130). The views expressed are those of the authors and do not necessarily reflect the views of the Spencer Foundation.",
  "authors": [
    {
      "affiliations": [
        "University of Virginia, Charlottesville, USA"
      ],
      "name": "Mandy Rispoli"
    },
    {
      "affiliations": [
        "University of Virginia, Charlottesville, USA"
      ],
      "name": "James Soland"
    },
    {
      "affiliations": [
        "Moi Teaching and Referral Hospital, Eldoret, Kenya"
      ],
      "name": "Chelagat Saina"
    },
    {
      "affiliations": [
        "Moi Teaching and Referral Hospital, Eldoret, Kenya"
      ],
      "name": "Mark Omollo"
    },
    {
      "affiliations": [
        "Indiana University School of Medicine, Indianapolis, USA"
      ],
      "name": "Rebecca McNally Keehn"
    },
    {
      "affiliations": [
        "Indiana University School of Medicine, Indianapolis, USA"
      ],
      "name": "Megan McHenry"
    },
    {
      "affiliations": [
        "North Carolina State University, Raleigh, USA"
      ],
      "name": "Jamie Pearson"
    }
  ],
  "title": "40 The autism in context of education-Kenya survey; designing a culturally responsive survey and initial results",
  "uid": "312c7768-a553-5dbc-a6cb-d658e6693be1"
}