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  • 1.
    Black, Melissa H.
    et al.
    School of Occupational Therapy, Social Work and Speech Pathology, Curtin University, Perth, Western Australia. Curtin Autism Research Group, Curtin University, Perth, Western Australia .
    Mahdi, Soheil
    Center of Neurodevelopmental Disorders (KIND), Centre for Psychiatry Research; Department of Women’s and Children’s Health, Karolinska Institutet & Child and Adolescent Psychiatry, Stockholm Health Care Services, Stockholm County Council, Stockholm, Sweden .
    Milbourn, Benjamin
    School of Occupational Therapy, Social Work and Speech Pathology, Curtin University, Perth, Western Australia; Curtin Autism Research Group, Curtin University, Perth, Western Australia .
    Thompson, Craig
    School of Occupational Therapy, Social Work and Speech Pathology, Curtin University, Perth, Western Australia; Curtin Autism Research Group, Curtin University, Perth, Western Australia .
    D'Angelo, Axel
    Center of Neurodevelopmental Disorders (KIND), Centre for Psychiatry Research; Department of Women’s and Children’s Health, Karolinska Institutet & Child and Adolescent Psychiatry, Stockholm Health Care Services, Stockholm County Council, Stockholm, Sweden .
    Ström, Eva
    Swedish Public Employment Service, Unit for Rehabilitation and Work, Hallunda-Norsborg, Stockholm, Sweden..
    Falkmer, Marita
    Jönköping University, School of Education and Communication, HLK, CHILD. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, HHJ, Dep. of Rehabilitation. School of Occupational Therapy, Social Work and Speech Pathology, Curtin University, Perth, Western Australia; Curtin Autism Research Group, Curtin University, Perth, Western Australia .
    Falkmer, Torbjörn
    Jönköping University, School of Health and Welfare, HHJ. CHILD. School of Occupational Therapy, Social Work and Speech Pathology, Curtin University, Perth, Western Australia; Curtin Autism Research Group, Curtin University, Perth, Western Australia; Pain and Rehabilitation Centre. Department of Medical and Health Sciences, Linkoping University, Linkoping, Sweden .
    Lerner, Matthew
    Stony Brook University, Stony Brook, New York, USA..
    Halladay, Alycia
    Autism Science Foundation, New York, USA.
    Gerber, Alan
    Stony Brook University, Stony Brook, New York, USA..
    Esposito, Christopher
    Stony Brook University, Stony Brook, New York, USA..
    Girdler, Sonya
    School of Occupational Therapy, Social Work and Speech Pathology, Curtin University, Perth, Western Australia; Curtin Autism Research Group, Curtin University, Perth, Western Australia .
    Bölte, Sven
    School of Occupational Therapy, Social Work and Speech Pathology, Curtin University, Perth, Western Australia; Curtin Autism Research Group, Curtin University, Perth, Western Australia; Center of Neurodevelopmental Disorders (KIND), Centre for Psychiatry Research; Department of Women’s and Children’s Health, Karolinska Institutet & Child and Adolescent Psychiatry, Stockholm Health Care Services, Stockholm County Council, Stockholm, Sweden .
    Perspectives of Key Stakeholders on Employment of Autistic Adults across the United States, Australia and Sweden2019In: Autism Research, ISSN 1939-3792, E-ISSN 1939-3806, p. 1-15Article in journal (Refereed)
    Abstract [en]

    Despite efforts to improve employment outcomes for autistic individuals, internationally their employment rates remain low. There is a need to better understand the factors influencing successful employment for autistic adults in the labor market from the perspectives of multiple keystakeholders. This study represents the second in a series of papers conducted as part of an International Society for Autism Research policy brief aimed at improving employment outcomes for autistic individuals. A community consultation methodology using focus groups, forums, and interviews was applied with autistic individuals (n = 19), family members (n = 18), service providers (n = 21), employers (n = 11), researchers (n = 5), and advocacy group representatives (n = 5) in Australia, Sweden, and the United States, aiming to identify the factors perceived to determine gaining and maintaining employment for autistic individuals. Directed content analysis, guided by the International Classification of Functioning, Disability and Health (ICF), was conducted to investigate the key factors influencing employment outcomes for autistic individuals. Meaningful verbal concepts, or units of text with common themes, were also derived from the qualitative data and then linked and compared to the ICF Autism Spectrum Disorder (ASD) Core-sets. Across countries, activity and participation and environmental factor categories of the ICF were the most associated with employment outcomes. Results suggest that removal of environmental barriers and enhancing environmental facilitators may assist to remediate ASD-related difficulties in the workplace.

    LAY SUMMARY: This study sought to understand the perspectives of autistic individuals and key stakeholders on factors influencing if autistic adults get and keep jobs. Across Australia, Sweden, and the UnitedStates, focus groups and interviews were conducted to understand international perspectives on what helps and hinders getting and keeping a job for autistic individuals. The environment, including supports, relationships, attitudes, and services, were perceived to be the most important for workplace success. Intervention targeting barriers and facilitators in the workplace environment may support autistic adults to be successful in the labor market.

  • 2.
    de Schipper, Elles
    et al.
    Karolinska Institutet.
    Lundequist, Aiko
    Karolinska Institutet.
    Coghill, David
    University of Dundee, Ninewells Hospital and Medical School, Dundee, UK.
    de Vries, Petrus J.
    University of Cape Town, South Africa.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Education and Communication, HLK, CHILD. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Holtmann, Martin
    Ruhr University Bochum, Hamm, Germany.
    Jonsson, Ulf
    Karolinska Institutet.
    Karande, Sunil
    Seth G.S. Medical College & K.E.M. Hospital, Mumbai, India.
    Robison, John E.
    US Department of Health and Human Services, Washington, DC.
    Shulman, Cory
    Hebrew University of Jerusalem, Israel.
    Singhal, Nidhi
    Action for Autism, New Delhi, India.
    Tonge, Bruce
    Monash University, Victoria, Australia.
    Wong, Virginia C. N.
    The University of Hong Kong, China.
    Zwaigenbaum, Lonnie
    University of Alberta, Edmonton, Canada.
    Bölte, Sven
    Karolinska Institutet.
    Ability and disability in autism spectrum disorder: A systematic literature review employing the International Classification of Functioning, Disability and Health-Children and Youth Version2015In: Autism Research, ISSN 1939-3792, E-ISSN 1939-3806, Vol. 8, no 6, p. 782-794Article, review/survey (Refereed)
    Abstract [en]

    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.

  • 3. de Schipper, Elles
    et al.
    Mahdi, Soheil
    de Vries, Petrus
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Holtman, Martin
    Karande, Sunil
    Almodayfer, Omar
    Shulman, Cory
    Tonge, Bruce
    Wong, Virginia V. C. N.
    Zwaigenbaum, Lonnie
    Bölte, Sven
    Functioning and disability in autism spectrum disorder: A worldwide survey of experts2016In: Autism Research, ISSN 1939-3792, E-ISSN 1939-3806, Vol. 9, no 9, p. 959-969Article in journal (Refereed)
    Abstract [en]

    Objective: 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.

    Methods: 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.

    Results: 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.

    Conclusion: The ICF(-CY) categories derived from international expert opinions indicate that the impact of ASD on functioning extends far beyond core symptom domains

  • 4.
    Mahdi, Soheil
    et al.
    Center of Neurodevelopmental Disorders (KIND), Division of Neuropsychiatry, Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
    Viljoen, Marisa
    Division of Child & Adolescent Psychiatry, University of Cape Town, Cape Town, South Africa.
    Yee, Tamara
    Department of Pediatrics, University of Alberta, Edmonton, Canada.
    Selb, Melissa
    ICF Research Branch, a cooperation partner within the WHO Collaborating Centre for the Family of International Classifications in Germany (at DIMDI), Nottwil, Switzerland.
    Singhal, Nidhi
    Action for Autism, The National Centre for Autism, New Delhi, India.
    Almodayfer, Omar
    Mental Health Department, KAMC-R, MNGHA, Riyadh, Saudi Arabia.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    de Vries, Petrus J.
    Division of Child & Adolescent Psychiatry, University of Cape Town, Cape Town, South Africa.
    Zwaigenbaum, Lonnie
    Bolte, Sven
    Center of Neurodevelopmental Disorders (KIND), Division of Neuropsychiatry, Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
    An international qualitative study of functioning in autism spectrum disorder using the World Health Organization international classification of functioning, disability and health framework2018In: Autism Research, ISSN 1939-3792, E-ISSN 1939-3806, Vol. 11, no 3, p. 463-475Article in journal (Refereed)
    Abstract [en]

    This is the third in a series of four empirical studies designed to develop International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism Spectrum Disorder (ASD). The present study aimed to describe functioning in ASD (as operationalized by the ICF) derived from the perspectives of diagnosed individuals, family members, and professionals. A qualitative study using focus groups and semi-structured interviews were conducted with 19 stakeholder groups (N = 90) from Canada, India, Saudi Arabia, South Africa, and Sweden. Meaningful concepts from the focus groups and individual interviews were linked to ICF categories using a deductive qualitative approach with standardized linking procedures. The deductive qualitative content analysis yielded meaningful functioning concepts that were linked to 110 ICF categories across all four ICF components. Broad variation of environmental factors and activities and participation categories were identified in this study, while body functions consisted mainly of mental functions. Body structures were sparsely mentioned by the participants. Positive aspects of ASD included honesty, attention to detail, and memory. The experiences provided by international stakeholders support the need to understand individuals with ASD in a broader perspective, extending beyond diagnostic criteria into many areas of functioning and environmental domains. This study is part of a larger systematic effort that will provide the basis to define ICF Core Sets for ASD, from which assessment tools can be generated for use in clinical practice, research, and health care policy making.

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