title: Functioning and disability in autism spectrum disorder: A worldwide survey of experts.
abstract: This study is the second of four to prepare International Classification of Functioning, Disability and Health (ICF; and Children and Youth version, ICF(-CY)) Core Sets for Autism Spectrum Disorder (ASD).The objective of this study was to survey the opinions and experiences of international experts on functioning and disability in ASD.
  
  
  
  Using a protocol stipulated by the World Health Organization (WHO) and monitored by the ICF Research Branch, an email-based questionnaire was circulated worldwide among ASD experts, and meaningful functional ability and disability concepts were extracted from their responses. These concepts were then linked to the ICF(-CY) by two independent researchers using a standardized linking procedure.
  
  
  
  N = 225 experts from 10 different disciplines and all six WHO-regions completed the survey. Meaningful concepts from the responses were linked to 210 ICF(-CY) categories. Of these, 103 categories were considered most relevant to ASD (i.e., identified by at least 5% of the experts), of which 37 were related to Activities and Participation, 35 to Body functions, 22 to Environmental factors, and 9 to Body structures. A variety of personal characteristics and ASD-related functioning skills were provided by experts, including honesty, loyalty, attention to detail and creative talents. Reported gender differences in ASD comprised more externalizing behaviors among males and more internalizing behaviors in females.
  
  
  
  The ICF(-CY) categories derived from international expert opinions indicate that the impact of ASD on functioning extends far beyond core symptom domains. Autism Res 2016, 9: 959-969. © 2016 The Authors Autism Research published by Wiley Periodicals, Inc. on behalf of International Society for Autism Research.
authors.affiliation: Department of Women's and Children's Health, Center of Neurodevelopmental Disorders (KIND), Pediatric Neuropsychiatry Unit, Karolinska Institutet, Stockholm, Sweden.|Child and Adolescent Psychiatry, Center of Psychiatry Research, Stockholm County Council, Stockholm, Sweden.
authors.forename: Elles
authors.initials: E
authors.lastname: de Schipper
authors.affiliation: Department of Women's and Children's Health, Center of Neurodevelopmental Disorders (KIND), Pediatric Neuropsychiatry Unit, Karolinska Institutet, Stockholm, Sweden.|Child and Adolescent Psychiatry, Center of Psychiatry Research, Stockholm County Council, Stockholm, Sweden.
authors.forename: Soheil
authors.initials: S
authors.lastname: Mahdi
authors.affiliation: Division of Child & Adolescent Psychiatry, University of Cape Town, Cape Town, South Africa.
authors.forename: Petrus
authors.initials: P
authors.lastname: de Vries
authors.affiliation: CHILD, SIDR, Jönköping University, Jönköping, Sweden.
authors.forename: Mats
authors.initials: M
authors.lastname: Granlund
authors.affiliation: LWL-University Hospital for Child and Adolescent Psychiatry, Ruhr-University Bochum, Hamm, Germany.
authors.forename: Martin
authors.initials: M
authors.lastname: Holtmann
authors.affiliation: Learning Disability Clinic, Department of Pediatrics, Seth G.S. Medical College & K.E.M. Hospital, Mumbai, India.
authors.forename: Sunil
authors.initials: S
authors.lastname: Karande
authors.affiliation: Psychiatry Section, King Abdulaziz Medical City, College of Medicine, Riyadh, Saudi-Arabia.
authors.forename: Omar
authors.initials: O
authors.lastname: Almodayfer
authors.affiliation: Paul Baerwald School of Social Work and Social Welfare, Hebrew University of Jerusalem, Jerusalem, Israel.
authors.forename: Cory
authors.initials: C
authors.lastname: Shulman
authors.affiliation: Centre for Developmental Psychiatry and Psychology, Monash University, Melbourne, Victoria, Australia.
authors.forename: Bruce
authors.initials: B
authors.lastname: Tonge
authors.affiliation: Department of Paediatrics and Adolescent Medicine, The University of Hong Kong, Hong Kong SAR, China.
authors.forename: Virginia V C N
authors.initials: VV
authors.lastname: Wong
authors.affiliation: Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada.
authors.forename: Lonnie
authors.initials: L
authors.lastname: Zwaigenbaum
authors.affiliation: Department of Women's and Children's Health, Center of Neurodevelopmental Disorders (KIND), Pediatric Neuropsychiatry Unit, Karolinska Institutet, Stockholm, Sweden. sven.bolte@ki.se.|Child and Adolescent Psychiatry, Center of Psychiatry Research, Stockholm County Council, Stockholm, Sweden. sven.bolte@ki.se.
authors.forename: Sven
authors.initials: S
authors.lastname: Bölte
mesh_terms: D000203:Activities of Daily Living / Q000145:classification / Q000523:psychology; D000293:Adolescent; D000328:Adult; D000368:Aged; D000067877:Autism Spectrum Disorder / Q000145:classification / Q000175:diagnosis* / Q000523:psychology; D002648:Child; D002675:Child, Preschool; D003431:Cross-Cultural Comparison; D004185:Disability Evaluation; D005260:Female; D006306:Health Surveys; D006801:Humans; D033183:Interdisciplinary Communication; D064702:International Classification of Functioning, Disability and Health; D000070516:Intersectoral Collaboration; D008297:Male; D008875:Middle Aged; D012737:Sex Factors; D014944:World Health Organization
keywords: assessment; autism; child psychiatry; heterogeneity; neurodevelopmental disorder; quality of life