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Studying the Emergence of Autism Spectrum Disorders in High-risk Infants: Methodological and Practical Issues

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Abstract

Detecting early signs of autism is essential for timely diagnosis and initiation of effective interventions. Several research groups have initiated prospective studies of high-risk populations including infant siblings, to systematically collect data on early signs within a longitudinal design. Despite the potential advantages of prospective studies of young children at high-risk for autism, there are also significant methodological, ethical and practical challenges. This paper outlines several of these challenges, including those related to sampling (e.g., defining appropriate comparison groups), measurement and clinical implications (e.g., addressing the needs of infants suspected of having early signs). We suggest possible design and implementation strategies to address these various challenges, based on current research efforts in the field and previous studies involving high-risk populations.

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Acknowledgments

We thank the National Alliance for Autism Research (NAAR) and the National Institute of Child Health and Human Development (NICHD) for supporting the workshop where we initially formulated the ideas outlined in this paper, and to NAAR, NICHD and the National Institute of Mental Health (NIMH) for supporting our ongoing collaborative research. In particular, we thank Dr. Andy Shih and Dr. Eric London at NAAR for their support and guidance. We also thank the investigators who have joined the ‘Baby Sibs’ Research Consortium since the initial inception of this paper, including Drs. Alice Carter, Leslie Carver, Kasia Chawarska, John Constantino, Karen Dobkins, Deborah Fein, Daniel Menninger, Helen Tager-Flusberg, and Nurit Yirmiya for their valuable insights and outstanding commitment. We also thank the scientific advisors to the consortium, including Drs. Anthony Bailey, Peter Mundy, Peter Szatmari, Steve Warren and Marshalyn Yeargin-Allsopp. Dr. Zwaigenbaum is supported by a New Investigator Fellowship from the Canadian Institute of Health Research.

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Authors and Affiliations

  1. Department of Paediatrics, McMaster Children’s Hospital at McMaster University, PO Box 2000, Hamilton, L8N 3Z5, Ontario, Canada

    Lonnie Zwaigenbaum

  2. Division of Pediatric Translational Research and Treatment Development, National Institute of Mental Health, Bethesda, MD, USA

    Audrey Thurm

  3. Departments of Pediatrics and Psychology & Human Development, Vanderbilt University, Nashville, TN, USA

    Wendy Stone

  4. Division of Occupational Science, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

    Grace Baranek

  5. Departments of Pediatrics and Psychology, Dalhousie University, Halifax, NS, USA

    Susan Bryson

  6. Department of Psychology, University of Pittsburgh, Pittsburgh, PA, USA

    Jana Iverson

  7. Center for Developmental Biology and Perinatal Medicine, National Institute of Child Health and Human Development, Bethesda, MD, USA

    Alice Kau

  8. Yale Child Study Centre, Yale University, New Haven, CT, USA

    Ami Klin

  9. Department of Psychology, University of Michigan, Ann Arbor, MI, USA

    Cathy Lord

  10. Department of Psychiatry and Behavioral Sciences, Kennedy Krieger Institute, Baltimore, MD, USA

    Rebecca Landa

  11. Department of Psychiatry and Behavioral Sciences, Johns Hopkins School of Medicine, Baltimore, MD, USA

    Rebecca Landa

  12. Department of Psychiatry and Behavioral Sciences, University of California at Davis, Sacramento, CA, USA

    Sally Rogers

  13. Departments of Psychology and Psychiatry, University of California, Los Angeles, CA, USA

    Marian Sigman

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  1. Lonnie Zwaigenbaum
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  2. Audrey Thurm
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  3. Wendy Stone
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  4. Grace Baranek
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  5. Susan Bryson
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  7. Alice Kau
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  8. Ami Klin
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  9. Cathy Lord
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  10. Rebecca Landa
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  11. Sally Rogers
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  12. Marian Sigman
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Correspondence to Lonnie Zwaigenbaum.

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Please note that the opinion and assertions contained herein are the private opinions of the authors and are not to be construed as official or as representing the views of the National Institute of Child Health and Human Development, the National Institute of Mental Health, or the National Institutes of Health.

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Zwaigenbaum, L., Thurm, A., Stone, W. et al. Studying the Emergence of Autism Spectrum Disorders in High-risk Infants: Methodological and Practical Issues. J Autism Dev Disord 37, 466–480 (2007). https://doi.org/10.1007/s10803-006-0179-x

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