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Functioning and quality of life in transition-aged youth on the autism spectrum - associations with autism symptom severity and mental health problems / Anna BACKMAN in Research in Autism Spectrum Disorders, 104 (June 2023)
[article]
Titre : Functioning and quality of life in transition-aged youth on the autism spectrum - associations with autism symptom severity and mental health problems Type de document : Texte imprimé et/ou numérique Auteurs : Anna BACKMAN, Auteur ; Eric ZANDER, Auteur ; Lise ROLL-PETTERSSON, Auteur ; Sarah VIGERLAND, Auteur ; Tatja HIRVIKOSKI, Auteur Article en page(s) : 102168 Langues : Anglais (eng) Mots-clés : Functioning Co-occurrence Self-report Autism spectrum disorder Transition-age Quality of life Index. décimale : PER Périodiques Résumé : Previous research notes difficulties in functioning and low quality of life (QoL) among transition-age youth on the autism spectrum, and poor mental health may contribute to these difficulties. This study examined the role of autism symptom severity and mental health problems on self-reported functioning and QoL in treatment-seeking transition-age autistic youth. The study included 140 autistic youth (16-25 years, M = 20.44 (SD = 2.95); n = 91 females [65%], n = 42 males [30%], n = 7 non-binary [5%]). We assessed functioning using a structured interview and QoL through a self-report questionnaire. Factors potentially associated with functioning and QoL were assessed using standardized self-report questionnaires of autism symptom severity, symptoms of anxiety and depression, and information from medical records. Participants reported functioning on the 90th percentile compared to general population norms, indicating significant disability, and also rated low overall QoL. Regression analysis showed that autism symptom severity and anxiety symptoms, and to some extent gender and having an ADHD diagnosis, explained 46% of the variance in overall functioning. Symptoms of anxiety and depression, and to a lesser extent, active friendship, explained 43% of the variance in QoL. Sampling limitations of the study include the overrepresentation of women and newly diagnosed participants. We highlight that functioning and QoL are multifactorial, necessitating a comprehensive assessment of transition-aged autistic youth, including mental health problems, to plan tangible interventions. En ligne : http://dx.doi.org/https://doi.org/10.1016/j.rasd.2023.102168 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=504
in Research in Autism Spectrum Disorders > 104 (June 2023) . - 102168[article] Functioning and quality of life in transition-aged youth on the autism spectrum - associations with autism symptom severity and mental health problems [Texte imprimé et/ou numérique] / Anna BACKMAN, Auteur ; Eric ZANDER, Auteur ; Lise ROLL-PETTERSSON, Auteur ; Sarah VIGERLAND, Auteur ; Tatja HIRVIKOSKI, Auteur . - 102168.
Langues : Anglais (eng)
in Research in Autism Spectrum Disorders > 104 (June 2023) . - 102168
Mots-clés : Functioning Co-occurrence Self-report Autism spectrum disorder Transition-age Quality of life Index. décimale : PER Périodiques Résumé : Previous research notes difficulties in functioning and low quality of life (QoL) among transition-age youth on the autism spectrum, and poor mental health may contribute to these difficulties. This study examined the role of autism symptom severity and mental health problems on self-reported functioning and QoL in treatment-seeking transition-age autistic youth. The study included 140 autistic youth (16-25 years, M = 20.44 (SD = 2.95); n = 91 females [65%], n = 42 males [30%], n = 7 non-binary [5%]). We assessed functioning using a structured interview and QoL through a self-report questionnaire. Factors potentially associated with functioning and QoL were assessed using standardized self-report questionnaires of autism symptom severity, symptoms of anxiety and depression, and information from medical records. Participants reported functioning on the 90th percentile compared to general population norms, indicating significant disability, and also rated low overall QoL. Regression analysis showed that autism symptom severity and anxiety symptoms, and to some extent gender and having an ADHD diagnosis, explained 46% of the variance in overall functioning. Symptoms of anxiety and depression, and to a lesser extent, active friendship, explained 43% of the variance in QoL. Sampling limitations of the study include the overrepresentation of women and newly diagnosed participants. We highlight that functioning and QoL are multifactorial, necessitating a comprehensive assessment of transition-aged autistic youth, including mental health problems, to plan tangible interventions. En ligne : http://dx.doi.org/https://doi.org/10.1016/j.rasd.2023.102168 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=504 An international qualitative study of functioning in autism spectrum disorder using the World Health Organization international classification of functioning, disability and health framework / S. MAHDI in Autism Research, 11-3 (March 2018)
[article]
Titre : An international qualitative study of functioning in autism spectrum disorder using the World Health Organization international classification of functioning, disability and health framework Type de document : Texte imprimé et/ou numérique Auteurs : S. MAHDI, Auteur ; M. VILJOEN, Auteur ; T. YEE, Auteur ; M. SELB, Auteur ; N. SINGHAL, Auteur ; Omar ALMODAYFER, Auteur ; M. GRANLUND, Auteur ; P. J. DE VRIES, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Sven BÖLTE, Auteur Article en page(s) : p.463-475 Langues : Anglais (eng) Mots-clés : Icf assessment autism spectrum disorder clinical practice functioning qualitative study strength Index. décimale : PER Périodiques Résumé : 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. Autism Res 2018, 11: 463-475. (c) 2017 The Authors Autism Research published by International Society for Autism Research and Wiley Periodicals, Inc. LAY SUMMARY: The study findings support the need to understand the living experiences of individuals with Autism Spectrum Disorder (ASD) from a broader perspective, taking into account many areas of an individual's functioning and environment. The ICF can serve as foundation for exploring these living experiences more extensively by offering tools that enable wide variety of individual difficulties and strengths to be captured along with important environmental influences. As such, these tools can facilitate interventions that meet the needs and goals of the individual. En ligne : http://dx.doi.org/10.1002/aur.1905 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=352
in Autism Research > 11-3 (March 2018) . - p.463-475[article] An international qualitative study of functioning in autism spectrum disorder using the World Health Organization international classification of functioning, disability and health framework [Texte imprimé et/ou numérique] / S. MAHDI, Auteur ; M. VILJOEN, Auteur ; T. YEE, Auteur ; M. SELB, Auteur ; N. SINGHAL, Auteur ; Omar ALMODAYFER, Auteur ; M. GRANLUND, Auteur ; P. J. DE VRIES, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Sven BÖLTE, Auteur . - p.463-475.
Langues : Anglais (eng)
in Autism Research > 11-3 (March 2018) . - p.463-475
Mots-clés : Icf assessment autism spectrum disorder clinical practice functioning qualitative study strength Index. décimale : PER Périodiques Résumé : 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. Autism Res 2018, 11: 463-475. (c) 2017 The Authors Autism Research published by International Society for Autism Research and Wiley Periodicals, Inc. LAY SUMMARY: The study findings support the need to understand the living experiences of individuals with Autism Spectrum Disorder (ASD) from a broader perspective, taking into account many areas of an individual's functioning and environment. The ICF can serve as foundation for exploring these living experiences more extensively by offering tools that enable wide variety of individual difficulties and strengths to be captured along with important environmental influences. As such, these tools can facilitate interventions that meet the needs and goals of the individual. En ligne : http://dx.doi.org/10.1002/aur.1905 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=352 Content validation of common measures of functioning for young children against the International Classification of Functioning, Disability and Health and Code and Core Sets relevant to neurodevelopmental conditions / Emily D'ARCY in Autism, 26-4 (May 2022)
[article]
Titre : Content validation of common measures of functioning for young children against the International Classification of Functioning, Disability and Health and Code and Core Sets relevant to neurodevelopmental conditions Type de document : Texte imprimé et/ou numérique Auteurs : Emily D'ARCY, Auteur ; Kerry WALLACE, Auteur ; Angela CHAMBERLAIN, Auteur ; Kiah EVANS, Auteur ; Benjamin MILBOURN, Auteur ; Sven BÖLTE, Auteur ; Andrew J. O. WHITEHOUSE, Auteur ; Sonya GIRDLER, Auteur Article en page(s) : p.928-939 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder Child Child, Preschool Disabled Persons Family Humans International Classification of Functioning, Disability and Health Neurodevelopmental Disorders/diagnosis adaptive behavior attention-deficit/hyperactivity disorder autism spectrum disorders behavioral measurement cerebral palsy content validity developmental delay functioning Index. décimale : PER Périodiques Résumé : Young children who have developmental delay, autism, or other neurodevelopmental conditions can have difficulties doing things in different areas of their life. What they can and cannot do is called their level of functioning. There are lots of assessment measures that aim to assess functioning. But, we are not sure if these measures assess all the things we need to know about these children's functioning. Other research has identified lists of items (codes) that need to be assessed to understand functioning for young children with different neurodevelopmental conditions fully. These lists include body functions (the things a child's body or brain can do), activities and participation (the activities and tasks a child does) and environmental factors (parts of the environment that can influence functioning). In this study, we looked at the items from these lists assessed by different functioning measures to see how they compared to what should be assessed. The measures that we looked at covered 21%-57% of all the codes and 19%-63% of the codes for lists specific to different conditions. Most of the measures focused on activity and participation codes, and they rarely assessed environmental factors. Knowing which codes and how much of the lists the measures assess can help researchers, clinicians and policymakers to choose measures that are more appropriate for young children with neurodevelopmental conditions. En ligne : https://dx.doi.org/10.1177/13623613211036809 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=473
in Autism > 26-4 (May 2022) . - p.928-939[article] Content validation of common measures of functioning for young children against the International Classification of Functioning, Disability and Health and Code and Core Sets relevant to neurodevelopmental conditions [Texte imprimé et/ou numérique] / Emily D'ARCY, Auteur ; Kerry WALLACE, Auteur ; Angela CHAMBERLAIN, Auteur ; Kiah EVANS, Auteur ; Benjamin MILBOURN, Auteur ; Sven BÖLTE, Auteur ; Andrew J. O. WHITEHOUSE, Auteur ; Sonya GIRDLER, Auteur . - p.928-939.
Langues : Anglais (eng)
in Autism > 26-4 (May 2022) . - p.928-939
Mots-clés : Autism Spectrum Disorder Child Child, Preschool Disabled Persons Family Humans International Classification of Functioning, Disability and Health Neurodevelopmental Disorders/diagnosis adaptive behavior attention-deficit/hyperactivity disorder autism spectrum disorders behavioral measurement cerebral palsy content validity developmental delay functioning Index. décimale : PER Périodiques Résumé : Young children who have developmental delay, autism, or other neurodevelopmental conditions can have difficulties doing things in different areas of their life. What they can and cannot do is called their level of functioning. There are lots of assessment measures that aim to assess functioning. But, we are not sure if these measures assess all the things we need to know about these children's functioning. Other research has identified lists of items (codes) that need to be assessed to understand functioning for young children with different neurodevelopmental conditions fully. These lists include body functions (the things a child's body or brain can do), activities and participation (the activities and tasks a child does) and environmental factors (parts of the environment that can influence functioning). In this study, we looked at the items from these lists assessed by different functioning measures to see how they compared to what should be assessed. The measures that we looked at covered 21%-57% of all the codes and 19%-63% of the codes for lists specific to different conditions. Most of the measures focused on activity and participation codes, and they rarely assessed environmental factors. Knowing which codes and how much of the lists the measures assess can help researchers, clinicians and policymakers to choose measures that are more appropriate for young children with neurodevelopmental conditions. En ligne : https://dx.doi.org/10.1177/13623613211036809 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=473 Functional gender differences in autism: An international, multidisciplinary expert survey using the International Classification of Functioning, Disability, and Health model / Karl LUNDIN in Autism, 25-4 (May 2021)
[article]
Titre : Functional gender differences in autism: An international, multidisciplinary expert survey using the International Classification of Functioning, Disability, and Health model Type de document : Texte imprimé et/ou numérique Auteurs : Karl LUNDIN, Auteur ; Soheil MAHDI, Auteur ; Johan ISAKSSON, Auteur ; Sven BÖLTE, Auteur Article en page(s) : p.1020-1035 Langues : Anglais (eng) Mots-clés : Disability International Classification of Functioning and Health autism cross-cultural female autism phenotype functioning gender differences Index. décimale : PER Périodiques Résumé : In this study, we explored if professionals working with autistic people in different regions of the world perceive differences between females and males diagnosed with the condition. A total of 131 professionals responded to a survey that included an open question about gender differences in autism. Of these, 32 responded that they do not perceive gender differences in autism. The information provided by the other 99 experts was analyzed to identify common patterns. Three main differences were found, (1) Matching the clinical conceptualization of autism where professionals described differences in core symptoms of autism, and that autistic females were less similar to the conceptualization of autism. In (2) Co-existing problems, professionals described that autistic males display more apparent problems including hyperactivity, while autistic females were perceived as having more internalizing issues such as anxiety and eating disorders. In the last category, (3) Navigating the social environment, experts perceived autistic females as more socially motivated, and more inclined to camouflage social difficulties, making their challenges less evident. Professionals also perceived differences in the social environment, for example, that autistic girls receive more support from their peers while autistic boys are more often bullied. Our results suggest that professionals working in different parts of the world acknowledge gender differences in autism, but also that there might be some regional differences. Finally, we found that gender differences reported by the international professionals could largely be assessed with a shortened version of the International Classification of Functioning by the World Health Organization, specifically developed for autism. En ligne : http://dx.doi.org/10.1177/1362361320975311 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444
in Autism > 25-4 (May 2021) . - p.1020-1035[article] Functional gender differences in autism: An international, multidisciplinary expert survey using the International Classification of Functioning, Disability, and Health model [Texte imprimé et/ou numérique] / Karl LUNDIN, Auteur ; Soheil MAHDI, Auteur ; Johan ISAKSSON, Auteur ; Sven BÖLTE, Auteur . - p.1020-1035.
Langues : Anglais (eng)
in Autism > 25-4 (May 2021) . - p.1020-1035
Mots-clés : Disability International Classification of Functioning and Health autism cross-cultural female autism phenotype functioning gender differences Index. décimale : PER Périodiques Résumé : In this study, we explored if professionals working with autistic people in different regions of the world perceive differences between females and males diagnosed with the condition. A total of 131 professionals responded to a survey that included an open question about gender differences in autism. Of these, 32 responded that they do not perceive gender differences in autism. The information provided by the other 99 experts was analyzed to identify common patterns. Three main differences were found, (1) Matching the clinical conceptualization of autism where professionals described differences in core symptoms of autism, and that autistic females were less similar to the conceptualization of autism. In (2) Co-existing problems, professionals described that autistic males display more apparent problems including hyperactivity, while autistic females were perceived as having more internalizing issues such as anxiety and eating disorders. In the last category, (3) Navigating the social environment, experts perceived autistic females as more socially motivated, and more inclined to camouflage social difficulties, making their challenges less evident. Professionals also perceived differences in the social environment, for example, that autistic girls receive more support from their peers while autistic boys are more often bullied. Our results suggest that professionals working in different parts of the world acknowledge gender differences in autism, but also that there might be some regional differences. Finally, we found that gender differences reported by the international professionals could largely be assessed with a shortened version of the International Classification of Functioning by the World Health Organization, specifically developed for autism. En ligne : http://dx.doi.org/10.1177/1362361320975311 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444 Gender-based differential item functioning on the child behavior checklist in youth on the autism spectrum: A brief report / Hillary K. SCHILTZ in Research in Autism Spectrum Disorders, 79 (November 2020)
[article]
Titre : Gender-based differential item functioning on the child behavior checklist in youth on the autism spectrum: A brief report Type de document : Texte imprimé et/ou numérique Auteurs : Hillary K. SCHILTZ, Auteur ; Brooke E. MAGNUS, Auteur Article en page(s) : 101669 Langues : Anglais (eng) Mots-clés : Differential item Functioning Autism Co-occurring symptoms Child behavior checklist Females Gender Index. décimale : PER Périodiques Résumé : Background Given the call for gender-informed autism research (Mandy & Lai, 2017), understanding the presentation and measurement of commonly co-occurring behavioral and emotional concerns among males and females on the autism spectrum is paramount. The validity of conclusions in this area of research necessitates that questionnaires capture true differences in constructs rather than systematic gender-based differences in measurement, an assumption which may be violated due to differential item functioning (DIF). Method In the present study, caregiver-report data on the Child Behavior Checklist (CBCL) (N = 502) were gathered across multiple studies from the National Database for Autism Research (NDAR), an NIH-funded data repository. Results Confirmatory factor analysis initially revealed poor to acceptable fit across subscales, suggesting a lack of unidimensionality. Fit was acceptable on all subscales following modifications for low factor loadings or highly correlated residuals. Multiple indicator multiple cause (MIMIC) models indicated that the majority of items did not show substantial DIF, with no items flagged for gender-based DIF on the Attention Problems, Withdrawn/Depressed, and Somatic Problems subscales. Items were flagged for gender-based DIF, however, on the Social Problems, Anxious/ Depressed, Aggressive Behavior, and Thought Problems subscales. Conclusions These findings indicate that few items on a measure of emotional and behavioral problems (Child Behavior Checklist; CBCL) function differently for male and female youth on the autism spectrum. This study has implications for future autism research aiming to accurately capture co-occurring emotional or behavioral problems and examine the etiology, trajectory, and ultimately treatment for males and females on the autism spectrum. En ligne : https://doi.org/10.1016/j.rasd.2020.101669 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=434
in Research in Autism Spectrum Disorders > 79 (November 2020) . - 101669[article] Gender-based differential item functioning on the child behavior checklist in youth on the autism spectrum: A brief report [Texte imprimé et/ou numérique] / Hillary K. SCHILTZ, Auteur ; Brooke E. MAGNUS, Auteur . - 101669.
Langues : Anglais (eng)
in Research in Autism Spectrum Disorders > 79 (November 2020) . - 101669
Mots-clés : Differential item Functioning Autism Co-occurring symptoms Child behavior checklist Females Gender Index. décimale : PER Périodiques Résumé : Background Given the call for gender-informed autism research (Mandy & Lai, 2017), understanding the presentation and measurement of commonly co-occurring behavioral and emotional concerns among males and females on the autism spectrum is paramount. The validity of conclusions in this area of research necessitates that questionnaires capture true differences in constructs rather than systematic gender-based differences in measurement, an assumption which may be violated due to differential item functioning (DIF). Method In the present study, caregiver-report data on the Child Behavior Checklist (CBCL) (N = 502) were gathered across multiple studies from the National Database for Autism Research (NDAR), an NIH-funded data repository. Results Confirmatory factor analysis initially revealed poor to acceptable fit across subscales, suggesting a lack of unidimensionality. Fit was acceptable on all subscales following modifications for low factor loadings or highly correlated residuals. Multiple indicator multiple cause (MIMIC) models indicated that the majority of items did not show substantial DIF, with no items flagged for gender-based DIF on the Attention Problems, Withdrawn/Depressed, and Somatic Problems subscales. Items were flagged for gender-based DIF, however, on the Social Problems, Anxious/ Depressed, Aggressive Behavior, and Thought Problems subscales. Conclusions These findings indicate that few items on a measure of emotional and behavioral problems (Child Behavior Checklist; CBCL) function differently for male and female youth on the autism spectrum. This study has implications for future autism research aiming to accurately capture co-occurring emotional or behavioral problems and examine the etiology, trajectory, and ultimately treatment for males and females on the autism spectrum. En ligne : https://doi.org/10.1016/j.rasd.2020.101669 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=434 Parent/caregiver perspectives of functioning in autism spectrum disorders: A comparative study in Sweden and South Africa / M. VILJOEN in Autism, 23-8 (November 2019)
PermalinkParental perspectives of functioning in their children with autism spectrum disorder: A global scoping review / Marisa VILJOEN in Autism, 25-1 (January 2021)
PermalinkRelationship between the social functioning of children with autism spectrum disorders and their siblings’ competencies/problem behaviors / Christie M. BREWTON in Research in Autism Spectrum Disorders, 6-2 (April-June 2012)
PermalinkThe Gestalt of functioning in autism spectrum disorder: Results of the international conference to develop final consensus International Classification of Functioning, Disability and Health core sets / Sven BÖLTE in Autism, 23-2 (February 2019)
PermalinkAn International Clinical Study of Ability and Disability in Autism Spectrum Disorder Using the WHO-ICF Framework / S. MAHDI in Journal of Autism and Developmental Disorders, 48-6 (June 2018)
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