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Classification of Functioning and Impairment: The Development of ICF Core Sets for Autism Spectrum Disorder

Authors

  • Sven Bölte,

    1. Neuropsychiatric Unit, Department of Women's and Children's Health, Center of Neurodevelopmental Disorders (KIND), Stockholm, Sweden
    2. Division of Child and Adolescent Psychiatry, Stockholm County Council, Stockholm, Sweden
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  • Elles de Schipper,

    Corresponding author
    1. Neuropsychiatric Unit, Department of Women's and Children's Health, Center of Neurodevelopmental Disorders (KIND), Stockholm, Sweden
    • Address for correspondence and reprints: Elles de Schipper, Gävlegatan 22B, plan 8 113 30 Stockholm. E-mail: elles.de.schipper@ki.se

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  • John E. Robison,

    1. Interagency Autism Coordinating Committee, US Department of Health and Human Services, Washington, DC
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  • Virginia C.N. Wong,

    1. Division of Pediatric Neurology, Developmental Behavioral Paediatrics and NeuroHabilitation, Department of Pediatrics and Adolescent Medicine, The University of Hong Kong, Hong Kong, China
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  • Melissa Selb,

    1. ICF Research Branch in cooperation with the WHO Collaborating Centre for the Family of International Classifications in Germany (at DIMDI), Nottwil, Switzerland
    2. Swiss Paraplegic Research (SPF), Nottwil, Switzerland
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  • Nidhi Singhal,

    1. Action for Autism, New Delhi, India
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  • Petrus J. de Vries,

    1. Division of Child and Adolescent Psychiatry, University of Cape Town, Cape Town, South Africa
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  • Lonnie Zwaigenbaum

    1. Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada
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  • The development of ICF Core Sets for ASD is supported by the Swedish Research Council (grant nr. 523-2009-7054), and the Swedish Research Council in partnership with FAS, FORMAS and VINNOVA (cross-disciplinary research program concerning children's and youth's mental health, grant nr. 259-2012-24).
  • Conflict of interest: The authors declare that they have no conflict of interest related to this work.

Abstract

Given the variability seen in Autism Spectrum Disorder (ASD), accurate quantification of functioning is vital to studying outcome and quality of life in affected individuals. The International Classification of Functioning, Disability and Health (ICF) provides a comprehensive, universally accepted framework for the description of health-related functioning. ICF Core Sets are shortlists of ICF categories that are selected to capture those aspects of functioning that are most relevant when describing a person with a specific condition. In this paper, the authors preview the process for developing ICF Core Sets for ASD, a collaboration with the World Health Organization and the ICF Research Branch. The ICF Children and Youth version (ICF-CY) was derived from the ICF and designed to capture the specific situation of the developing child. As ASD affects individuals throughout the life span, and the ICF-CY includes all ICF categories, the ICF-CY will be used in this project (“ICF(-CY)” from now on). The ICF(-CY) categories to be included in the ICF Core Sets for ASD will be determined at an ICF Core Set Consensus Conference, where evidence from four preparatory studies (a systematic review, an expert survey, a patient and caregiver qualitative study, and a clinical cross-sectional study) will be integrated. Comprehensive and Brief ICF Core Sets for ASD will be developed with the goal of providing useful standards for research and clinical practice and generating a common language for functioning and impairment in ASD in different areas of life and across the life span. Autism Res 2014, 7: 167-172. © 2013 International Society for Autism Research, Wiley Periodicals, Inc.

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