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Parent Perceptions of Community Autism Spectrum Disorder Stigma: Measure Validation and Associations in a Multi-site Sample

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Abstract

In this study we developed a brief, English/Spanish bilingual parent-reported scale of perceived community autism spectrum disorder (ASD) stigma and tested it in a multi-site sample of Latino and non-Latino white parents of children with ASD. Confirmatory factor analysis of the scale supported a single factor solution with 8 items showing good internal consistency. Regression modeling suggested that stigma score was associated with unmet ASD care needs but not therapy hours or therapy types. Child public insurance, parent nativity, number of children with ASD in the household, parent-reported ASD severity, and family structure, were associated with higher stigma score. The scale and the scale’s associations with service use may be useful to those attempting to measure or reduce ASD stigma.

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Funding

This study was funded by Grant K23MH095828 from the U.S. National Institute of Mental Health; Dr. Lindly’s effort was partially funded by T32HS000063 from the U.S. Agency for Healthcare Research and Quality.

Author information

Author notes

  1. Olivia J. Lindly

    Present address: Division of General Academic Pediatrics, Massachusetts General Hospital, Boston, MA, USA

  2. Alison E. Chavez

    Present address: Department of Psychology, University of Massachusetts Boston, Boston, MA, USA

Authors and Affiliations

  1. Division of General Pediatrics, Doernbecher Children’s Hospital, Oregon Health & Science University, 707 SW Gaines St., Mail Code CDRC-P, Portland, OR, 97239, USA

    Katharine E. Zuckerman, Olivia J. Lindly, Alison E. Chavez & Maritza Cobian

  2. Oregon Health & Science University – Portland State University School of Public Health, Portland, OR, USA

    Katharine E. Zuckerman

  3. Department of Psychiatry and Pediatrics, University of Colorado School of Medicine, Aurora, CO, USA

    Nuri M. Reyes

  4. Department of Clinical Psychology, Pacific University, Hillsboro, OR, USA

    Maritza Cobian

  5. Department of Pediatrics, Los Angeles Children’s Hospital, University of Southern California, Los Angeles, CA, USA

    Kristy Macias & Kathryn A. Smith

  6. University of Southern California University Center for Excellence in Developmental Disabilities, Los Angeles, CA, USA

    Kristy Macias & Kathryn A. Smith

  7. Department of Pediatrics, University of Colorado School of Medicine, Aurora, CO, USA

    Ann M. Reynolds

  8. Harvard Medical School, Boston, USA

    Olivia J. Lindly

Authors
  1. Katharine E. Zuckerman
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  2. Olivia J. Lindly
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  4. Alison E. Chavez
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  8. Kathryn A. Smith
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Contributions

KEZ conceived of the study, supervised all aspects of the study, and drafted the manuscript. OJL lead the study data analysis and assisted with drafting the manuscript. AEC participated in study design and data collection, and assisted with data analysis and drafting the manuscript. KAS, AMR, KM, and NMR all contributed to study design and data collection, and critically reviewed the final manuscript. MC contributed to data collection and critically reviewed the final manuscript.

Corresponding author

Correspondence to Katharine E. Zuckerman.

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Conflict of interest

Drs. Zuckerman, Lindly, Reyes, Reynolds, and Smith have declared that they have no conflicts of interest to disclose. Ms. Chavez, Ms. Cobian, and Ms. Macias also have declared that they have no conflicts of interest to disclose.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study. As the project was deemed minimal risk, the IRB allowed an information sheet to serve as the consent document, and consent was implied by completion of the survey.

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Zuckerman, K.E., Lindly, O.J., Reyes, N.M. et al. Parent Perceptions of Community Autism Spectrum Disorder Stigma: Measure Validation and Associations in a Multi-site Sample. J Autism Dev Disord 48, 3199–3209 (2018). https://doi.org/10.1007/s10803-018-3586-x

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  • DOI: https://doi.org/10.1007/s10803-018-3586-x

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