Ability and Disability in Autism Spectrum Disorder

A Systematic Literature Review Employing the International Classification of Functioning, Disability and Health-Children and Youth Version

Elles J De Schipper, Aiko Lundequist, David Coghill, Petrus J De Vries, Mats Granlund, Martin H Holtmann, Ulf Jonsson, Sunil C Karande, John E. Robison, Cory Shulman, Nidhi Singhal, Bruce Tonge, Virginia V.C.N. Wong, Lonnie Zwaigenbaum, Sven Bölte

Research output: Contribution to journalReview ArticleResearchpeer-review

24 Citations (Scopus)

Abstract

Objective: This study is the first in a series of four empirical investigations to develop International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism Spectrum Disorder (ASD). The objective was to use a systematic review approach to identify, number, and link functional ability and disability concepts used in the scientific ASD literature to the nomenclature of the ICF-CY (Children and Youth version of the ICF, covering the life span). Methods: Systematic searches on outcome studies of ASD were carried out in Medline/PubMed, PsycINFO, ERIC and Cinahl, and relevant functional ability and disability concepts extracted from the included studies. These concepts were then linked to the ICF-CY by two independent researchers using a standardized linking procedure. New concepts were extracted from the studies until saturation of identified ICF-CY categories was reached. Results: Seventy-one studies were included in the final analysis and 2475 meaningful concepts contained in these studies were linked to 146 ICF-CY categories. Of these, 99 categories were considered most relevant to ASD (i.e., identified in at least 5% of the studies), of which 63 were related to Activities and Participation, 28 were related to Body functions, and 8 were related to Environmental factors. The five most frequently identified categories were basic interpersonal interactions (51%), emotional functions (49%), complex interpersonal interactions (48%), attention functions (44%), and mental functions of language (44%). Conclusion: The broad variety of ICF-CY categories identified in this study reflects the heterogeneity of functional differences found in ASD—both with respect to disability and exceptionality—and underlines the potential value of the ICF-CY as a framework to capture an individual's functioning in all dimensions of life. The current results in combination with three additional preparatory studies (expert survey, focus groups, and clinical study) will provide the scientific basis for defining the ICF Core Sets for ASD for multipurpose use in basic and applied research and every day clinical practice of ASD. Autism Res 2015, 8: 782–794.

Original languageEnglish
Pages (from-to)782-794
Number of pages13
JournalAutism Research
Volume8
Issue number6
DOIs
Publication statusPublished - 1 Dec 2015

Keywords

  • assessment
  • autism
  • child psychiatry
  • Diagnostic and Statistical Manual of Mental Disorders
  • diagnostics
  • International Classification of Diseases
  • neurodevelopmental disorder

Cite this

De Schipper, Elles J ; Lundequist, Aiko ; Coghill, David ; De Vries, Petrus J ; Granlund, Mats ; Holtmann, Martin H ; Jonsson, Ulf ; Karande, Sunil C ; Robison, John E. ; Shulman, Cory ; Singhal, Nidhi ; Tonge, Bruce ; Wong, Virginia V.C.N. ; Zwaigenbaum, Lonnie ; Bölte, Sven. / Ability and Disability in Autism Spectrum Disorder : A Systematic Literature Review Employing the International Classification of Functioning, Disability and Health-Children and Youth Version. In: Autism Research. 2015 ; Vol. 8, No. 6. pp. 782-794.
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abstract = "Objective: This study is the first in a series of four empirical investigations to develop International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism Spectrum Disorder (ASD). The objective was to use a systematic review approach to identify, number, and link functional ability and disability concepts used in the scientific ASD literature to the nomenclature of the ICF-CY (Children and Youth version of the ICF, covering the life span). Methods: Systematic searches on outcome studies of ASD were carried out in Medline/PubMed, PsycINFO, ERIC and Cinahl, and relevant functional ability and disability concepts extracted from the included studies. These concepts were then linked to the ICF-CY by two independent researchers using a standardized linking procedure. New concepts were extracted from the studies until saturation of identified ICF-CY categories was reached. Results: Seventy-one studies were included in the final analysis and 2475 meaningful concepts contained in these studies were linked to 146 ICF-CY categories. Of these, 99 categories were considered most relevant to ASD (i.e., identified in at least 5{\%} of the studies), of which 63 were related to Activities and Participation, 28 were related to Body functions, and 8 were related to Environmental factors. The five most frequently identified categories were basic interpersonal interactions (51{\%}), emotional functions (49{\%}), complex interpersonal interactions (48{\%}), attention functions (44{\%}), and mental functions of language (44{\%}). Conclusion: The broad variety of ICF-CY categories identified in this study reflects the heterogeneity of functional differences found in ASD—both with respect to disability and exceptionality—and underlines the potential value of the ICF-CY as a framework to capture an individual's functioning in all dimensions of life. The current results in combination with three additional preparatory studies (expert survey, focus groups, and clinical study) will provide the scientific basis for defining the ICF Core Sets for ASD for multipurpose use in basic and applied research and every day clinical practice of ASD. Autism Res 2015, 8: 782–794.",
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De Schipper, EJ, Lundequist, A, Coghill, D, De Vries, PJ, Granlund, M, Holtmann, MH, Jonsson, U, Karande, SC, Robison, JE, Shulman, C, Singhal, N, Tonge, B, Wong, VVCN, Zwaigenbaum, L & Bölte, S 2015, 'Ability and Disability in Autism Spectrum Disorder: A Systematic Literature Review Employing the International Classification of Functioning, Disability and Health-Children and Youth Version', Autism Research, vol. 8, no. 6, pp. 782-794. https://doi.org/10.1002/aur.1485

Ability and Disability in Autism Spectrum Disorder : A Systematic Literature Review Employing the International Classification of Functioning, Disability and Health-Children and Youth Version. / De Schipper, Elles J; Lundequist, Aiko; Coghill, David; De Vries, Petrus J; Granlund, Mats; Holtmann, Martin H; Jonsson, Ulf; Karande, Sunil C; Robison, John E.; Shulman, Cory; Singhal, Nidhi; Tonge, Bruce; Wong, Virginia V.C.N.; Zwaigenbaum, Lonnie; Bölte, Sven.

In: Autism Research, Vol. 8, No. 6, 01.12.2015, p. 782-794.

Research output: Contribution to journalReview ArticleResearchpeer-review

TY - JOUR

T1 - Ability and Disability in Autism Spectrum Disorder

T2 - A Systematic Literature Review Employing the International Classification of Functioning, Disability and Health-Children and Youth Version

AU - De Schipper, Elles J

AU - Lundequist, Aiko

AU - Coghill, David

AU - De Vries, Petrus J

AU - Granlund, Mats

AU - Holtmann, Martin H

AU - Jonsson, Ulf

AU - Karande, Sunil C

AU - Robison, John E.

AU - Shulman, Cory

AU - Singhal, Nidhi

AU - Tonge, Bruce

AU - Wong, Virginia V.C.N.

AU - Zwaigenbaum, Lonnie

AU - Bölte, Sven

PY - 2015/12/1

Y1 - 2015/12/1

N2 - Objective: This study is the first in a series of four empirical investigations to develop International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism Spectrum Disorder (ASD). The objective was to use a systematic review approach to identify, number, and link functional ability and disability concepts used in the scientific ASD literature to the nomenclature of the ICF-CY (Children and Youth version of the ICF, covering the life span). Methods: Systematic searches on outcome studies of ASD were carried out in Medline/PubMed, PsycINFO, ERIC and Cinahl, and relevant functional ability and disability concepts extracted from the included studies. These concepts were then linked to the ICF-CY by two independent researchers using a standardized linking procedure. New concepts were extracted from the studies until saturation of identified ICF-CY categories was reached. Results: Seventy-one studies were included in the final analysis and 2475 meaningful concepts contained in these studies were linked to 146 ICF-CY categories. Of these, 99 categories were considered most relevant to ASD (i.e., identified in at least 5% of the studies), of which 63 were related to Activities and Participation, 28 were related to Body functions, and 8 were related to Environmental factors. The five most frequently identified categories were basic interpersonal interactions (51%), emotional functions (49%), complex interpersonal interactions (48%), attention functions (44%), and mental functions of language (44%). Conclusion: The broad variety of ICF-CY categories identified in this study reflects the heterogeneity of functional differences found in ASD—both with respect to disability and exceptionality—and underlines the potential value of the ICF-CY as a framework to capture an individual's functioning in all dimensions of life. The current results in combination with three additional preparatory studies (expert survey, focus groups, and clinical study) will provide the scientific basis for defining the ICF Core Sets for ASD for multipurpose use in basic and applied research and every day clinical practice of ASD. Autism Res 2015, 8: 782–794.

AB - Objective: This study is the first in a series of four empirical investigations to develop International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism Spectrum Disorder (ASD). The objective was to use a systematic review approach to identify, number, and link functional ability and disability concepts used in the scientific ASD literature to the nomenclature of the ICF-CY (Children and Youth version of the ICF, covering the life span). Methods: Systematic searches on outcome studies of ASD were carried out in Medline/PubMed, PsycINFO, ERIC and Cinahl, and relevant functional ability and disability concepts extracted from the included studies. These concepts were then linked to the ICF-CY by two independent researchers using a standardized linking procedure. New concepts were extracted from the studies until saturation of identified ICF-CY categories was reached. Results: Seventy-one studies were included in the final analysis and 2475 meaningful concepts contained in these studies were linked to 146 ICF-CY categories. Of these, 99 categories were considered most relevant to ASD (i.e., identified in at least 5% of the studies), of which 63 were related to Activities and Participation, 28 were related to Body functions, and 8 were related to Environmental factors. The five most frequently identified categories were basic interpersonal interactions (51%), emotional functions (49%), complex interpersonal interactions (48%), attention functions (44%), and mental functions of language (44%). Conclusion: The broad variety of ICF-CY categories identified in this study reflects the heterogeneity of functional differences found in ASD—both with respect to disability and exceptionality—and underlines the potential value of the ICF-CY as a framework to capture an individual's functioning in all dimensions of life. The current results in combination with three additional preparatory studies (expert survey, focus groups, and clinical study) will provide the scientific basis for defining the ICF Core Sets for ASD for multipurpose use in basic and applied research and every day clinical practice of ASD. Autism Res 2015, 8: 782–794.

KW - assessment

KW - autism

KW - child psychiatry

KW - Diagnostic and Statistical Manual of Mental Disorders

KW - diagnostics

KW - International Classification of Diseases

KW - neurodevelopmental disorder

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U2 - 10.1002/aur.1485

DO - 10.1002/aur.1485

M3 - Review Article

VL - 8

SP - 782

EP - 794

JO - Autism Research

JF - Autism Research

SN - 1939-3792

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ER -