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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: 167172. 2013 International Society for Autism Research, Wiley Periodicals, Inc.
Keywords: neurodevelopmental disorders; autistic disorder; assessment; children and youth; psychiatry; mental health; health
care; ICF; ICF Core Set
From the Neuropsychiatric Unit, Department of Womens and Childrens Health, Center of Neurodevelopmental Disorders (KIND), Stockholm, Sweden
(S.B., E.S.); Division of Child and Adolescent Psychiatry, Stockholm County Council, Stockholm, Sweden (S.B.); Interagency Autism Coordinating
Committee, US Department of Health and Human Services, Washington, DC (J.E.R.); Division of Pediatric Neurology, Developmental Behavioral
Paediatrics and NeuroHabilitation, Department of Pediatrics and Adolescent Medicine, The University of Hong Kong, Hong Kong, China (V.C.N.W.); ICF
Research Branch in cooperation with the WHO Collaborating Centre for the Family of International Classifications in Germany (at DIMDI), Nottwil,
Switzerland (M.S.); Swiss Paraplegic Research (SPF), Nottwil, Switzerland (M.S.); Action for Autism, New Delhi, India (N.S.); Division of Child and
Adolescent Psychiatry, University of Cape Town, Cape Town, South Africa (P.J.V.); Department of Pediatrics, University of Alberta, Edmonton, Alberta,
Canada (L.Z.)
Received April 17, 2013; accepted for publication September 3, 2013
Address for correspondence and reprints: Elles de Schipper, Gvlegatan 22B, plan 8 113 30 Stockholm. E-mail: elles.de.schipper@ki.se
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 childrens and youths mental health, grant nr.
259-2012-24).
Conflict of interest: The authors declare that they have no conflict of interest related to this work.
Published online 3 October 2013 in Wiley Online Library (wileyonlinelibrary.com)
DOI: 10.1002/aur.1335
2013 International Society for Autism Research, Wiley Periodicals, Inc.