Dépouillements

Putting autism research in social contexts / Kristen BOTTEMA-BEUTEL in Autism, 28-7 (July 2024)  

Public ISBD [article]  inAutism > 28-7 (July 2024) . - p.1597-1601 Titre : Putting autism research in social contexts Type de document : Texte imprimé et/ou numérique Auteurs : Kristen BOTTEMA-BEUTEL, Auteur Article en page(s) : p.1597-1601 Langues : Anglais (eng) Index. décimale : PER Périodiques En ligne : https://dx.doi.org/10.1177/13623613241245642 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531 [article] Putting autism research in social contexts [Texte imprimé et/ou numérique] / Kristen BOTTEMA-BEUTEL, Auteur . - p.1597-1601. Langues : Anglais (eng) in Autism > 28-7 (July 2024) . - p.1597-1601 Index. décimale : PER Périodiques En ligne : https://dx.doi.org/10.1177/13623613241245642 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531

Studies assessing domains pertaining to structural language in autism vary in reporting practices and approaches to assessment: A systematic review / Lue SHEN ; Amalia MONROE GULICK ; Mabel L. RICE ; Inge-Marie EIGSTI in Autism, 28-7 (July 2024)  

Public ISBD [article]  inAutism > 28-7 (July 2024) . - p.1602-1621 Titre : Studies assessing domains pertaining to structural language in autism vary in reporting practices and approaches to assessment: A systematic review Type de document : Texte imprimé et/ou numérique Auteurs : Lue SHEN, Auteur ; Amalia MONROE GULICK, Auteur ; Mabel L. RICE, Auteur ; Inge-Marie EIGSTI, Auteur Article en page(s) : p.1602-1621 Langues : Anglais (eng) Mots-clés : adolescents  autism spectrum disorders  behavioral measurement  communication and language  intellectual measurement  school-aged children Index. décimale : PER Périodiques Résumé : Language in autism is heterogeneous, with a significant proportion of individuals having structural language difficulties and inclusion of language impairment as a specifier under Diagnostic and Statistical Manual of Mental Disorders (5th ed.) criteria for autism. This systematic review asked: What are the reporting patterns of variables pertaining to structural language in autism prior to and after publication of the Diagnostic and Statistical Manual of Mental Disorders (5th ed.)? What norm-referenced assessments does research use to characterize the language abilities of autistic individuals with respect to language impairment? This preregistered review (PROSPERO: CRD42021260394) followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Searches took place in September 2022 and included Linguistics and Language Behavior Abstracts, PsycINFO, PubMed, and the Directory of Open Access Journals. Search terms included three essential concepts: autism, language, and age. Two coders independently screened and evaluated articles. Searches yielded 57 qualifying studies, with mostly consistent reporting practices prior to and after the Diagnostic and Statistical Manual of Mental Disorders (5th ed.). Studies varied in how they defined language groups and in what norm-referenced measures they used. Interpreting research on structural language in autism requires attention to diagnostic and grouping criteria. Although inconsistency in reporting in original studies limited this review, better understanding the available information on structural language in autistic individuals aged 3-21?years may support identification of language needs. Lay abstract Under the Diagnostic and Statistical Manual of Mental Disorders (5th ed.), language impairment can co-occur with autism. It is not yet clear how research defines, reports, and characterizes structural language abilities of autistic individuals eligible for school-based special education services (aged 3-21?years) in the United States. In the United States, students typically must be formally diagnosed to be eligible for services and supports. However, the quality of diagnosis is only as good as the research evidence on which diagnosis depends. To evaluate evidence quality, we examined how studies of school-aged autistic individuals report assessments of language ability. This systematic review included 57 studies using English language age-referenced assessments used to measure structural language. Findings showed many differences across studies in how language abilities were measured and reported. Also, none of the studies fully reported the variables relevant to characterizing language impairment. Outcomes were similar across versions of the Diagnostic and Statistical Manual of Mental Disorders. Findings indicate that researchers and clinicians should pay attention to reporting diagnostic and grouping criteria. Carefully interpreting research evidence is critical for ensuring that diagnostic criteria and supports are representative of and accessible to autistic individuals and relevant parties. En ligne : https://dx.doi.org/10.1177/13623613231216155 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531 [article] Studies assessing domains pertaining to structural language in autism vary in reporting practices and approaches to assessment: A systematic review [Texte imprimé et/ou numérique] / Lue SHEN, Auteur ; Amalia MONROE GULICK, Auteur ; Mabel L. RICE, Auteur ; Inge-Marie EIGSTI, Auteur . - p.1602-1621. Langues : Anglais (eng) in Autism > 28-7 (July 2024) . - p.1602-1621 Mots-clés : adolescents  autism spectrum disorders  behavioral measurement  communication and language  intellectual measurement  school-aged children Index. décimale : PER Périodiques Résumé : Language in autism is heterogeneous, with a significant proportion of individuals having structural language difficulties and inclusion of language impairment as a specifier under Diagnostic and Statistical Manual of Mental Disorders (5th ed.) criteria for autism. This systematic review asked: What are the reporting patterns of variables pertaining to structural language in autism prior to and after publication of the Diagnostic and Statistical Manual of Mental Disorders (5th ed.)? What norm-referenced assessments does research use to characterize the language abilities of autistic individuals with respect to language impairment? This preregistered review (PROSPERO: CRD42021260394) followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Searches took place in September 2022 and included Linguistics and Language Behavior Abstracts, PsycINFO, PubMed, and the Directory of Open Access Journals. Search terms included three essential concepts: autism, language, and age. Two coders independently screened and evaluated articles. Searches yielded 57 qualifying studies, with mostly consistent reporting practices prior to and after the Diagnostic and Statistical Manual of Mental Disorders (5th ed.). Studies varied in how they defined language groups and in what norm-referenced measures they used. Interpreting research on structural language in autism requires attention to diagnostic and grouping criteria. Although inconsistency in reporting in original studies limited this review, better understanding the available information on structural language in autistic individuals aged 3-21?years may support identification of language needs. Lay abstract Under the Diagnostic and Statistical Manual of Mental Disorders (5th ed.), language impairment can co-occur with autism. It is not yet clear how research defines, reports, and characterizes structural language abilities of autistic individuals eligible for school-based special education services (aged 3-21?years) in the United States. In the United States, students typically must be formally diagnosed to be eligible for services and supports. However, the quality of diagnosis is only as good as the research evidence on which diagnosis depends. To evaluate evidence quality, we examined how studies of school-aged autistic individuals report assessments of language ability. This systematic review included 57 studies using English language age-referenced assessments used to measure structural language. Findings showed many differences across studies in how language abilities were measured and reported. Also, none of the studies fully reported the variables relevant to characterizing language impairment. Outcomes were similar across versions of the Diagnostic and Statistical Manual of Mental Disorders. Findings indicate that researchers and clinicians should pay attention to reporting diagnostic and grouping criteria. Carefully interpreting research evidence is critical for ensuring that diagnostic criteria and supports are representative of and accessible to autistic individuals and relevant parties. En ligne : https://dx.doi.org/10.1177/13623613231216155 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531

School absenteeism in autistic children and adolescents: A scoping review / Maud PALMGREN ; Anna LINDBLADH ; Sven BÖLTE ; Ulf JONSSON in Autism, 28-7 (July 2024)  

Public ISBD [article]  inAutism > 28-7 (July 2024) . - p.1622-1637 Titre : School absenteeism in autistic children and adolescents: A scoping review Type de document : Texte imprimé et/ou numérique Auteurs : Maud PALMGREN, Auteur ; Anna LINDBLADH, Auteur ; Sven BÖLTE, Auteur ; Ulf JONSSON, Auteur Article en page(s) : p.1622-1637 Langues : Anglais (eng) Mots-clés : absenteeism  autism  dropout  interventions  prevalence  risk factor  school refusal Index. décimale : PER Périodiques Résumé : School absenteeism is a major societal problem, with a range of potential adverse long-term consequences. This scoping review aimed to provide a comprehensive overview of the research on school absenteeism in autistic children and adolescents, expose important gaps in the literature, and explore possibilities for future systematic reviews. Five relevant databases were searched systematically from inception to June 2023, yielding a total of 46 eligible reports from 42 separate studies. All studies were conducted in high-income countries, and most were published in the last decade. Three major themes emerged: occurrence, contextual factors, and interventions. The results of large-scale population-based studies clearly suggested that autistic children and adolescents were absent from school more often than their non-autistic peers, which partly was attributable to co-occurring conditions. Bullying also emerged as a potential risk factor. Only a few preliminary studies were available on targeted interventions, emphasizing the need for more robust studies. More research is also needed on the mechanisms leading to and maintaining school absenteeism in this group of learners. Overall, the diversity of research questions, methods, and definitions used in this body of research suggests that systematic reviews with narrow focus on a few key questions may still be premature. Lay abstract Autistic children and teenagers are, on average, absent from school more than their peers. The aim of this review was to provide an overview of the research on absence from school in autistic learners in primary and secondary school, to help guide future research. We sifted through 4632 reports and found 42 studies with a focus on school absence and autism. We looked at how, when, and where the studies were conducted. We also summarized the results and outlined how absence was measured in the studies. Absence from school may lead to problems later in life, like incomplete education and unemployment. It is therefore important to know how common this problem is among autistic learners, what the reasons may be, and what type of support they need. The studies were from high-income countries and were mainly published in the last 10 years. Studies based on school registers from the United States and the United Kingdom clearly showed that children and teenagers with autism had higher risk of school absence than those without autism. Absence was often linked to problems with mental health or additional neurodevelopmental conditions. Several studies also showed that absence in autistic children and adolescents was related to problems in school, like bullying or lack of knowledge about autism. Support programs were only evaluated in a few studies with a small number of study participants. We conclude that more research is needed to better understand why autistic learners are absent and what they need to thrive in school. En ligne : https://dx.doi.org/10.1177/13623613231217409 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531 [article] School absenteeism in autistic children and adolescents: A scoping review [Texte imprimé et/ou numérique] / Maud PALMGREN, Auteur ; Anna LINDBLADH, Auteur ; Sven BÖLTE, Auteur ; Ulf JONSSON, Auteur . - p.1622-1637. Langues : Anglais (eng) in Autism > 28-7 (July 2024) . - p.1622-1637 Mots-clés : absenteeism  autism  dropout  interventions  prevalence  risk factor  school refusal Index. décimale : PER Périodiques Résumé : School absenteeism is a major societal problem, with a range of potential adverse long-term consequences. This scoping review aimed to provide a comprehensive overview of the research on school absenteeism in autistic children and adolescents, expose important gaps in the literature, and explore possibilities for future systematic reviews. Five relevant databases were searched systematically from inception to June 2023, yielding a total of 46 eligible reports from 42 separate studies. All studies were conducted in high-income countries, and most were published in the last decade. Three major themes emerged: occurrence, contextual factors, and interventions. The results of large-scale population-based studies clearly suggested that autistic children and adolescents were absent from school more often than their non-autistic peers, which partly was attributable to co-occurring conditions. Bullying also emerged as a potential risk factor. Only a few preliminary studies were available on targeted interventions, emphasizing the need for more robust studies. More research is also needed on the mechanisms leading to and maintaining school absenteeism in this group of learners. Overall, the diversity of research questions, methods, and definitions used in this body of research suggests that systematic reviews with narrow focus on a few key questions may still be premature. Lay abstract Autistic children and teenagers are, on average, absent from school more than their peers. The aim of this review was to provide an overview of the research on absence from school in autistic learners in primary and secondary school, to help guide future research. We sifted through 4632 reports and found 42 studies with a focus on school absence and autism. We looked at how, when, and where the studies were conducted. We also summarized the results and outlined how absence was measured in the studies. Absence from school may lead to problems later in life, like incomplete education and unemployment. It is therefore important to know how common this problem is among autistic learners, what the reasons may be, and what type of support they need. The studies were from high-income countries and were mainly published in the last 10 years. Studies based on school registers from the United States and the United Kingdom clearly showed that children and teenagers with autism had higher risk of school absence than those without autism. Absence was often linked to problems with mental health or additional neurodevelopmental conditions. Several studies also showed that absence in autistic children and adolescents was related to problems in school, like bullying or lack of knowledge about autism. Support programs were only evaluated in a few studies with a small number of study participants. We conclude that more research is needed to better understand why autistic learners are absent and what they need to thrive in school. En ligne : https://dx.doi.org/10.1177/13623613231217409 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531

Social motor synchrony in autism spectrum conditions: A systematic review / Nicola YUILL in Autism, 28-7 (July 2024)  

Public ISBD [article]  inAutism > 28-7 (July 2024) . - p.1638-1653 Titre : Social motor synchrony in autism spectrum conditions: A systematic review Type de document : Texte imprimé et/ou numérique Auteurs : Nicola YUILL, Auteur Article en page(s) : p.1638-1653 Langues : Anglais (eng) Mots-clés : autism spectrum conditions  interpersonal synchrony  social motor synchrony Index. décimale : PER Périodiques Résumé : Some researchers suggest difficulties synchronising with a partner could underpin the social differences associated with Autism Spectrum Condition, potentially acting as a marker for autism. Social Motor Synchrony (SMS) is one aspect of synchrony that could augment observational diagnostic procedures. However, the full breadth of literature examining SMS in autism has not been systematically reviewed. A systematic review following the Preferred Reporting Items for Systematic Review and Meta-Analysis guidelines yielded 29 papers meeting inclusion criteria. Of 21 studies including a comparison group, all indicated weaker SMS between two autistic partners and in mixed-neurotype partnerships compared with two non-autistic partners. Papers involving mixed-neurotype pairs without a comparison group showed higher than chance SMS and demonstrated an increase in SMS over time following rhythm-based interventions. Although research so far demonstrates weaker SMS in pairs involving an autistic partner compared with non-autistic pairs, we identified several limitations which may have influenced SMS in autistic people and their partners. Further work is needed with autistic partnerships, more natural and preferred tasks within comfortable settings and partnerships, and more work to identify the basis of synchrony differences. We set out implications for design of further research. Lay abstract When two people interact, they often fall into sync with one another by moving their bodies at the same time. Some say autistic people are not as good as non-autistic people at moving at the same time as a partner. This has led some researchers to ask whether measuring synchrony might help diagnose autism. We reviewed the research so far to look at differences in Social Motor Synchrony (SMS) (the way we move together) between autistic people and people they interact with. The research suggests that interactions involving an autistic partner (either two autistic partners, or an autistic and non-autistic partner) show lower synchrony than a non-autistic pair. However, we recognised elements in the research so far that may have affected SMS in interactions involving an autistic person. One way SMS may have been affected in research so far might be the way interactions have been set up in the research studies. Few papers studied interactions between two autistic people or looked at synchrony in comfortable environments with autistic-preferred tasks. The studies also do not explain why synchrony might be different, or weaker, in pairs involving autistic partners. We use these limitations to suggest improvements for future research. En ligne : https://dx.doi.org/10.1177/13623613231213295 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531 [article] Social motor synchrony in autism spectrum conditions: A systematic review [Texte imprimé et/ou numérique] / Nicola YUILL, Auteur . - p.1638-1653. Langues : Anglais (eng) in Autism > 28-7 (July 2024) . - p.1638-1653 Mots-clés : autism spectrum conditions  interpersonal synchrony  social motor synchrony Index. décimale : PER Périodiques Résumé : Some researchers suggest difficulties synchronising with a partner could underpin the social differences associated with Autism Spectrum Condition, potentially acting as a marker for autism. Social Motor Synchrony (SMS) is one aspect of synchrony that could augment observational diagnostic procedures. However, the full breadth of literature examining SMS in autism has not been systematically reviewed. A systematic review following the Preferred Reporting Items for Systematic Review and Meta-Analysis guidelines yielded 29 papers meeting inclusion criteria. Of 21 studies including a comparison group, all indicated weaker SMS between two autistic partners and in mixed-neurotype partnerships compared with two non-autistic partners. Papers involving mixed-neurotype pairs without a comparison group showed higher than chance SMS and demonstrated an increase in SMS over time following rhythm-based interventions. Although research so far demonstrates weaker SMS in pairs involving an autistic partner compared with non-autistic pairs, we identified several limitations which may have influenced SMS in autistic people and their partners. Further work is needed with autistic partnerships, more natural and preferred tasks within comfortable settings and partnerships, and more work to identify the basis of synchrony differences. We set out implications for design of further research. Lay abstract When two people interact, they often fall into sync with one another by moving their bodies at the same time. Some say autistic people are not as good as non-autistic people at moving at the same time as a partner. This has led some researchers to ask whether measuring synchrony might help diagnose autism. We reviewed the research so far to look at differences in Social Motor Synchrony (SMS) (the way we move together) between autistic people and people they interact with. The research suggests that interactions involving an autistic partner (either two autistic partners, or an autistic and non-autistic partner) show lower synchrony than a non-autistic pair. However, we recognised elements in the research so far that may have affected SMS in interactions involving an autistic person. One way SMS may have been affected in research so far might be the way interactions have been set up in the research studies. Few papers studied interactions between two autistic people or looked at synchrony in comfortable environments with autistic-preferred tasks. The studies also do not explain why synchrony might be different, or weaker, in pairs involving autistic partners. We use these limitations to suggest improvements for future research. En ligne : https://dx.doi.org/10.1177/13623613231213295 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531

Differentiating early sensory profiles in toddlers at elevated likelihood of autism and association with later clinical outcome and diagnosis / Elena CAPELLI ; Chiara CANTIANI ; Carolina BERETTA ; Massimo MOLTENI ; Valentina RIVA in Autism, 28-7 (July 2024)  

Public ISBD [article]  inAutism > 28-7 (July 2024) . - p.1654-1666 Titre : Differentiating early sensory profiles in toddlers at elevated likelihood of autism and association with later clinical outcome and diagnosis Type de document : Texte imprimé et/ou numérique Auteurs : Elena CAPELLI, Auteur ; Chiara CANTIANI, Auteur ; Carolina BERETTA, Auteur ; Massimo MOLTENI, Auteur ; Valentina RIVA, Auteur Article en page(s) : p.1654-1666 Langues : Anglais (eng) Mots-clés : autism spectrum disorder  development  infancy  sensory  siblings Index. décimale : PER Périodiques Résumé : Sensory features are included in the diagnostic criteria of autism spectrum disorder, and sensory responsiveness may produce "cascading effects" on later development. However, the relation between early sensory profiles and later skills has yet to be defined. This study aims to characterize sensory subgroups in 116 toddlers at elevated likelihood for autism spectrum disorder and test their association with later autistic traits and diagnosis. We used latent class analyses to assess individual differences across sensory patterns, grouping individuals with similar sensory profiles together. The final model was chosen based on a stepwise procedure, starting with a one-class solution, and then adds one class at a time. The Sensory Profile-2 Questionnaire measured clinical sensory features, and four sensory patterns were evaluated (seeking, avoiding, sensitivity, and registration). We investigated sensory subgroups concerning socio-communication skills and restricted/repetitive behaviors at 24?months and the clinical best-estimate diagnosis at 3?years. A three-class solution was favored, and toddlers can be characterized into three homogeneous sensory groups: low seeking, sensory balanced, and high sensitivity. The results showed that the high sensitivity group showed later socio-communicative difficulties and restricted/repetitive behaviors. Children in this class were those with the highest percentage of diagnosis at 3?years (57.9%). These findings provide new insights into the nature of sensory processing and may have implications for personalized support needs. Lay abstract Early sensory responsiveness may produce cascading effects on later development, but the relation between sensory profiles and autistic diagnosis remains unclear. In a longitudinal sample of toddlers at elevated likelihood for autism, we aimed to characterize sensory subgroups and their association with clinical outcomes later on. Three sensory subgroups were described and early sensory sensitivity plays a significant role in later development and diagnosis. This study supported the importance of examining different levels of sensory patterns to dissect the phenotypic heterogeneity in sensory processing. As sensory differences are associated with later developmental outcomes, these results may be critical when designing intervention needs and support for children at increased likelihood for neurodevelopmental disorders. En ligne : https://dx.doi.org/10.1177/13623613231200081 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531 [article] Differentiating early sensory profiles in toddlers at elevated likelihood of autism and association with later clinical outcome and diagnosis [Texte imprimé et/ou numérique] / Elena CAPELLI, Auteur ; Chiara CANTIANI, Auteur ; Carolina BERETTA, Auteur ; Massimo MOLTENI, Auteur ; Valentina RIVA, Auteur . - p.1654-1666. Langues : Anglais (eng) in Autism > 28-7 (July 2024) . - p.1654-1666 Mots-clés : autism spectrum disorder  development  infancy  sensory  siblings Index. décimale : PER Périodiques Résumé : Sensory features are included in the diagnostic criteria of autism spectrum disorder, and sensory responsiveness may produce "cascading effects" on later development. However, the relation between early sensory profiles and later skills has yet to be defined. This study aims to characterize sensory subgroups in 116 toddlers at elevated likelihood for autism spectrum disorder and test their association with later autistic traits and diagnosis. We used latent class analyses to assess individual differences across sensory patterns, grouping individuals with similar sensory profiles together. The final model was chosen based on a stepwise procedure, starting with a one-class solution, and then adds one class at a time. The Sensory Profile-2 Questionnaire measured clinical sensory features, and four sensory patterns were evaluated (seeking, avoiding, sensitivity, and registration). We investigated sensory subgroups concerning socio-communication skills and restricted/repetitive behaviors at 24?months and the clinical best-estimate diagnosis at 3?years. A three-class solution was favored, and toddlers can be characterized into three homogeneous sensory groups: low seeking, sensory balanced, and high sensitivity. The results showed that the high sensitivity group showed later socio-communicative difficulties and restricted/repetitive behaviors. Children in this class were those with the highest percentage of diagnosis at 3?years (57.9%). These findings provide new insights into the nature of sensory processing and may have implications for personalized support needs. Lay abstract Early sensory responsiveness may produce cascading effects on later development, but the relation between sensory profiles and autistic diagnosis remains unclear. In a longitudinal sample of toddlers at elevated likelihood for autism, we aimed to characterize sensory subgroups and their association with clinical outcomes later on. Three sensory subgroups were described and early sensory sensitivity plays a significant role in later development and diagnosis. This study supported the importance of examining different levels of sensory patterns to dissect the phenotypic heterogeneity in sensory processing. As sensory differences are associated with later developmental outcomes, these results may be critical when designing intervention needs and support for children at increased likelihood for neurodevelopmental disorders. En ligne : https://dx.doi.org/10.1177/13623613231200081 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531

Is parent education a factor in identifying autism/takiw?tanga in an ethnic cohort of Pacific children in Aotearoa, New Zealand? A national cross-sectional study using linked administrative data / Betty KOLOSE-PULEFOLAU ; Troy RUHE ; Faith ALDRIDGE ; Siale FOLIAKI ; Liam KOKAUA ; Talai MAPUSUA ; Joanne DACOMBE ; Rosalina RICHARDS ; Russell BLAKELOCK ; Nicholas BOWDEN in Autism, 28-7 (July 2024)  

Public ISBD [article]  inAutism > 28-7 (July 2024) . - p.1667-1676 Titre : Is parent education a factor in identifying autism/takiw?tanga in an ethnic cohort of Pacific children in Aotearoa, New Zealand? A national cross-sectional study using linked administrative data Type de document : Texte imprimé et/ou numérique Auteurs : Betty KOLOSE-PULEFOLAU, Auteur ; Troy RUHE, Auteur ; Faith ALDRIDGE, Auteur ; Siale FOLIAKI, Auteur ; Liam KOKAUA, Auteur ; Talai MAPUSUA, Auteur ; Joanne DACOMBE, Auteur ; Rosalina RICHARDS, Auteur ; Russell BLAKELOCK, Auteur ; Nicholas BOWDEN, Auteur Article en page(s) : p.1667-1676 Langues : Anglais (eng) Mots-clés : autism  Pacific ethnicity  parental education  population data Index. décimale : PER Périodiques Résumé : Studies have found early detection of autism is protective for an individual and their family. Fewer Pacific children are diagnosed with autism compared with non-Pacific children, and those who have significantly higher needs, suggesting an undercount of those diagnosed. The purpose of this study was to explore any association between parental education and autism in Pacific children living in Aotearoa, New Zealand. This was a national cross-sectional study using data from New Zealand?s Integrated Data Infrastructure, including Pacific and non-M?ori non-Pacific children in the 2013 Census. A novel method was employed to capture autism, while years of parents' education was estimated from their highest attained qualification level. Apposite regression models were used to analyse the relationship between parental education and autism. We found that autism was identified in 1.1% of Pacific children compared with 1.6% of non-M?ori, non-Pacific children. A year of education among parents of Pacific children was associated with increased identification of autism (odds ratio = 1.10; 95% confidence interval = 1.06-1.15). The findings show education plays a positive role in receiving a diagnosis for Pacific autistic children but suggest a systemic failure to support Pacific parents to navigate existing health systems for themselves or their children. Lay abstract Previous studies of autism in Aotearoa, New Zealand, suggest that fewer Pacific children receive an autism diagnosis compared to European children. This study aimed to explore if formal education qualification of parents is related to receiving an autism diagnosis for their Pacific child. Our findings show that autism was identified in 1.1% of Pacific children compared with 1.6% among non-M?ori, non-Pacific children. Parents with higher levels of education were more likely to receive an autism diagnosis for their Pacific child. While the study findings indicate education plays a positive role in receiving a diagnosis for autistic children, they suggest a systemic failure of supporting Pacific parents and communities to navigate the health and education systems that exist in Aotearoa, New Zealand. En ligne : https://dx.doi.org/10.1177/13623613231217800 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531 [article] Is parent education a factor in identifying autism/takiw?tanga in an ethnic cohort of Pacific children in Aotearoa, New Zealand? A national cross-sectional study using linked administrative data [Texte imprimé et/ou numérique] / Betty KOLOSE-PULEFOLAU, Auteur ; Troy RUHE, Auteur ; Faith ALDRIDGE, Auteur ; Siale FOLIAKI, Auteur ; Liam KOKAUA, Auteur ; Talai MAPUSUA, Auteur ; Joanne DACOMBE, Auteur ; Rosalina RICHARDS, Auteur ; Russell BLAKELOCK, Auteur ; Nicholas BOWDEN, Auteur . - p.1667-1676. Langues : Anglais (eng) in Autism > 28-7 (July 2024) . - p.1667-1676 Mots-clés : autism  Pacific ethnicity  parental education  population data Index. décimale : PER Périodiques Résumé : Studies have found early detection of autism is protective for an individual and their family. Fewer Pacific children are diagnosed with autism compared with non-Pacific children, and those who have significantly higher needs, suggesting an undercount of those diagnosed. The purpose of this study was to explore any association between parental education and autism in Pacific children living in Aotearoa, New Zealand. This was a national cross-sectional study using data from New Zealand?s Integrated Data Infrastructure, including Pacific and non-M?ori non-Pacific children in the 2013 Census. A novel method was employed to capture autism, while years of parents' education was estimated from their highest attained qualification level. Apposite regression models were used to analyse the relationship between parental education and autism. We found that autism was identified in 1.1% of Pacific children compared with 1.6% of non-M?ori, non-Pacific children. A year of education among parents of Pacific children was associated with increased identification of autism (odds ratio = 1.10; 95% confidence interval = 1.06-1.15). The findings show education plays a positive role in receiving a diagnosis for Pacific autistic children but suggest a systemic failure to support Pacific parents to navigate existing health systems for themselves or their children. Lay abstract Previous studies of autism in Aotearoa, New Zealand, suggest that fewer Pacific children receive an autism diagnosis compared to European children. This study aimed to explore if formal education qualification of parents is related to receiving an autism diagnosis for their Pacific child. Our findings show that autism was identified in 1.1% of Pacific children compared with 1.6% among non-M?ori, non-Pacific children. Parents with higher levels of education were more likely to receive an autism diagnosis for their Pacific child. While the study findings indicate education plays a positive role in receiving a diagnosis for autistic children, they suggest a systemic failure of supporting Pacific parents and communities to navigate the health and education systems that exist in Aotearoa, New Zealand. En ligne : https://dx.doi.org/10.1177/13623613231217800 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531

Infant responses to direct gaze and associations to autism: A live eye-tracking study / Pär NYSTRÖM ; Giorgia BUSSU ; Sven BÖLTE ; Terje FALCK-YTTER in Autism, 28-7 (July 2024)  

Public ISBD [article]  inAutism > 28-7 (July 2024) . - p.1677-1689 Titre : Infant responses to direct gaze and associations to autism: A live eye-tracking study Type de document : Texte imprimé et/ou numérique Auteurs : Pär NYSTRÖM, Auteur ; Giorgia BUSSU, Auteur ; Sven BÖLTE, Auteur ; Terje FALCK-YTTER, Auteur Article en page(s) : p.1677-1689 Langues : Anglais (eng) Mots-clés : autism spectrum disorder  direct gaze  infant development  live eye tracking Index. décimale : PER Périodiques Résumé : Being looked at is an important communicative signal, and attenuated responses to such direct gaze have been suggested as an early sign of autism. Using live eye tracking, we examined whether direct gaze elicits different gaze responses in infants at ages 10, 14 and 18?months with and without later autism in real-life interaction. The sample consisted of 169 infants: 35 with elevated likelihood of autism and subsequent diagnosis, 94 without subsequent diagnosis and 40 with typical likelihood of autism. Infants in all groups tended to look more towards the adult?s face shortly after the direct gaze occurred. Neither how much nor how quickly the infants responded to the direct gaze differentiated the without elevated likelihood of autism and subsequent diagnosis and with elevated likelihood of autism and subsequent diagnosis groups. Infants in the typical likelihood group looked more at the face after the direct-gaze event than infants in the two elevated likelihood groups, but this result is tentative. In an exploratory analysis, infants in the elevated likelihood of autism and subsequent diagnosis group looked away quicker from faces with direct gaze than infants in the typical likelihood group, but this measure did not correlate with dimensional autism or differentiate between the two elevated likelihood groups. The current results suggest that attenuated behavioural responses to direct gaze in infancy are neither strong nor specific early markers of autism. Lay abstract When other people look directly towards us, we often respond by looking back at them, and such direct-gaze responses are important for establishing eye contact. Atypical eye contact is common in autism, but how and when this aspect of autism develops is not well understood. Here, we studied whether how much and how quickly infants respond to others' direct gaze is associated with autism in toddlerhood. We did this by measuring direct-gaze responses in a playful social interaction using live eye tracking. The study included 169 infants, of whom 129 had an elevated likelihood of developing autism due to having a first-degree family member with the condition, and 40 with typical likelihood of autism. In the elevated likelihood group, 35 were diagnosed with autism spectrum disorder at 3?years of age, and 94 were not. The results showed that infants in all three groups tended to increase their looking towards the adult?s face after the adult looked directly at them. However, neither how much nor how quickly the infants responded to direct gaze by looking back at the adult reliably differentiated the infants with or without subsequent autism. While infants in the elevated likelihood of autism and subsequent diagnosis group tended to look away quicker from faces with direct gaze than infants in the typical likelihood group, this measure did not differentiate between the two elevated likelihood groups. We interpret the results as supporting the view that atypical direct-gaze responses are not early markers of autism. En ligne : https://dx.doi.org/10.1177/13623613231203037 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531 [article] Infant responses to direct gaze and associations to autism: A live eye-tracking study [Texte imprimé et/ou numérique] / Pär NYSTRÖM, Auteur ; Giorgia BUSSU, Auteur ; Sven BÖLTE, Auteur ; Terje FALCK-YTTER, Auteur . - p.1677-1689. Langues : Anglais (eng) in Autism > 28-7 (July 2024) . - p.1677-1689 Mots-clés : autism spectrum disorder  direct gaze  infant development  live eye tracking Index. décimale : PER Périodiques Résumé : Being looked at is an important communicative signal, and attenuated responses to such direct gaze have been suggested as an early sign of autism. Using live eye tracking, we examined whether direct gaze elicits different gaze responses in infants at ages 10, 14 and 18?months with and without later autism in real-life interaction. The sample consisted of 169 infants: 35 with elevated likelihood of autism and subsequent diagnosis, 94 without subsequent diagnosis and 40 with typical likelihood of autism. Infants in all groups tended to look more towards the adult?s face shortly after the direct gaze occurred. Neither how much nor how quickly the infants responded to the direct gaze differentiated the without elevated likelihood of autism and subsequent diagnosis and with elevated likelihood of autism and subsequent diagnosis groups. Infants in the typical likelihood group looked more at the face after the direct-gaze event than infants in the two elevated likelihood groups, but this result is tentative. In an exploratory analysis, infants in the elevated likelihood of autism and subsequent diagnosis group looked away quicker from faces with direct gaze than infants in the typical likelihood group, but this measure did not correlate with dimensional autism or differentiate between the two elevated likelihood groups. The current results suggest that attenuated behavioural responses to direct gaze in infancy are neither strong nor specific early markers of autism. Lay abstract When other people look directly towards us, we often respond by looking back at them, and such direct-gaze responses are important for establishing eye contact. Atypical eye contact is common in autism, but how and when this aspect of autism develops is not well understood. Here, we studied whether how much and how quickly infants respond to others' direct gaze is associated with autism in toddlerhood. We did this by measuring direct-gaze responses in a playful social interaction using live eye tracking. The study included 169 infants, of whom 129 had an elevated likelihood of developing autism due to having a first-degree family member with the condition, and 40 with typical likelihood of autism. In the elevated likelihood group, 35 were diagnosed with autism spectrum disorder at 3?years of age, and 94 were not. The results showed that infants in all three groups tended to increase their looking towards the adult?s face after the adult looked directly at them. However, neither how much nor how quickly the infants responded to direct gaze by looking back at the adult reliably differentiated the infants with or without subsequent autism. While infants in the elevated likelihood of autism and subsequent diagnosis group tended to look away quicker from faces with direct gaze than infants in the typical likelihood group, this measure did not differentiate between the two elevated likelihood groups. We interpret the results as supporting the view that atypical direct-gaze responses are not early markers of autism. En ligne : https://dx.doi.org/10.1177/13623613231203037 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531

Emotion recognition in autism spectrum condition during the COVID-19 pandemic / Christoph KORN ; Sabine C. HERPERTZ ; Thomas FUCHS in Autism, 28-7 (July 2024)  

Public ISBD [article]  inAutism > 28-7 (July 2024) . - p.1690-1702 Titre : Emotion recognition in autism spectrum condition during the COVID-19 pandemic Type de document : Texte imprimé et/ou numérique Auteurs : Christoph KORN, Auteur ; Sabine C. HERPERTZ, Auteur ; Thomas FUCHS, Auteur Article en page(s) : p.1690-1702 Langues : Anglais (eng) Mots-clés : autism spectrum disorder  COVID-19  emotion recognition  eye tracking Index. décimale : PER Périodiques Résumé : With the widespread use of masks in the COVID-19 pandemic, it is crucial to understand how emotion recognition is affected by partial face covering. Since individuals with autism spectrum condition often tend to look at the lower half of the face, they are likely to be particularly restricted in emotion recognition by people wearing masks, since they are now forced to look at the upper half of the face. This study compared the recognition of basic and complex emotions in individuals with and without autism spectrum condition, when faces were presented uncovered, with face masks, or with sunglasses. We also used eye tracking to examine group differences in gaze patterns during emotion recognition. Individuals with autism spectrum condition were less accurate at recognizing emotions in all three conditions. Averaged across the three stimulus types, individuals with autism spectrum condition had greater difficulty recognizing anger, fear, pride, and embarrassment than control group. There was no group difference in emotion recognition between the three conditions. However, compared to individuals without autism spectrum condition, there was no evidence of either gaze avoidance or preference for the mouth region. Our results suggest that emotion recognition is reduced in individuals with autism spectrum condition, but this is not due to differences in gaze patterns. Lay Abstract In the COVID-19 pandemic, wearing face masks became mandatory to prevent the spread of the virus. However, they restrict the ability to recognize emotions to the upper part of the face. Since individuals with autism spectrum condition often tend to look at the lower half of the face, they may be particularly restricted in emotion recognition by people wearing masks, since they are now forced to look at the upper half of the face. The current study compared the recognition of facially expressed emotions between individuals with and without autism spectrum condition. Each photo was shown in three types, once uncovered, once with face mask, and once with sunglasses. Our results revealed a reduction in accuracy of individuals with autism spectrum condition at recognizing emotions in all three stimulus types and exhibited more difficulties distinguishing anger, fear, pride, and embarrassment. During the emotion recognition task, there was no difference in which facial areas the groups looked at. We did not find evidence that the disadvantages of individuals with autism spectrum condition in emotion recognition were due to looking at different areas of the face. En ligne : https://dx.doi.org/10.1177/13623613231203306 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531 [article] Emotion recognition in autism spectrum condition during the COVID-19 pandemic [Texte imprimé et/ou numérique] / Christoph KORN, Auteur ; Sabine C. HERPERTZ, Auteur ; Thomas FUCHS, Auteur . - p.1690-1702. Langues : Anglais (eng) in Autism > 28-7 (July 2024) . - p.1690-1702 Mots-clés : autism spectrum disorder  COVID-19  emotion recognition  eye tracking Index. décimale : PER Périodiques Résumé : With the widespread use of masks in the COVID-19 pandemic, it is crucial to understand how emotion recognition is affected by partial face covering. Since individuals with autism spectrum condition often tend to look at the lower half of the face, they are likely to be particularly restricted in emotion recognition by people wearing masks, since they are now forced to look at the upper half of the face. This study compared the recognition of basic and complex emotions in individuals with and without autism spectrum condition, when faces were presented uncovered, with face masks, or with sunglasses. We also used eye tracking to examine group differences in gaze patterns during emotion recognition. Individuals with autism spectrum condition were less accurate at recognizing emotions in all three conditions. Averaged across the three stimulus types, individuals with autism spectrum condition had greater difficulty recognizing anger, fear, pride, and embarrassment than control group. There was no group difference in emotion recognition between the three conditions. However, compared to individuals without autism spectrum condition, there was no evidence of either gaze avoidance or preference for the mouth region. Our results suggest that emotion recognition is reduced in individuals with autism spectrum condition, but this is not due to differences in gaze patterns. Lay Abstract In the COVID-19 pandemic, wearing face masks became mandatory to prevent the spread of the virus. However, they restrict the ability to recognize emotions to the upper part of the face. Since individuals with autism spectrum condition often tend to look at the lower half of the face, they may be particularly restricted in emotion recognition by people wearing masks, since they are now forced to look at the upper half of the face. The current study compared the recognition of facially expressed emotions between individuals with and without autism spectrum condition. Each photo was shown in three types, once uncovered, once with face mask, and once with sunglasses. Our results revealed a reduction in accuracy of individuals with autism spectrum condition at recognizing emotions in all three stimulus types and exhibited more difficulties distinguishing anger, fear, pride, and embarrassment. During the emotion recognition task, there was no difference in which facial areas the groups looked at. We did not find evidence that the disadvantages of individuals with autism spectrum condition in emotion recognition were due to looking at different areas of the face. En ligne : https://dx.doi.org/10.1177/13623613231203306 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531

Cognitive emotion regulation difficulties increase affective reactivity to daily-life stress in autistic adolescents and young adults / Clémence FELLER ; Maude SCHNEIDER in Autism, 28-7 (July 2024)  

Public ISBD [article]  inAutism > 28-7 (July 2024) . - p.1703-1718 Titre : Cognitive emotion regulation difficulties increase affective reactivity to daily-life stress in autistic adolescents and young adults Type de document : Texte imprimé et/ou numérique Auteurs : Clémence FELLER, Auteur ; Maude SCHNEIDER, Auteur Article en page(s) : p.1703-1718 Langues : Anglais (eng) Mots-clés : adolescence  ecological momentary assessment  emotion regulation  mental health  negative affects  psychological stress Index. décimale : PER Périodiques Résumé : Increased reactivity to daily stressors is associated with mental health difficulties, which are common in autistic individuals. We investigated affective reactivity to daily-life stress, cognitive emotion regulation, and their link with co-occurring mental health symptoms in adolescents and young adults with autism. A 6-day ecological momentary assessment protocol was used to assess perceived daily-life stress (event-related, activity-related, and social stress) as well as negative affects in autistic (n = 39, age = 18.4) and non-autistic (n = 55, age = 18.1) participants. Co-occurring mental health difficulties, social functioning, and cognitive emotion regulation were assessed with questionnaires and clinical evaluations. Youth with autism showed higher levels of perceived stress related to their daily social context and activities, as well as an increased affective reactivity to activity-related stressors compared with non-autistic youth. Moreover, they reported using less adaptive and more non-adaptive emotion regulation, the latter increasing their affective response to daily stressors and possibly contributing to the severity of co-occurring mental health symptoms. Our findings demonstrate high perceived daily-life stress in autistic adolescents and young adults. To minimize the negative effects of stress and the development of mental health symptoms, interventions could focus on effective stress management and strategies that autistic young people use to manage their emotions. Lay abstract Previous research has shown that autistic individuals report high levels of perceived stress and have an increased likelihood of developing mental health difficulties. Increase in individuals' negative emotions in relation to perceived stress (i.e. affective reactivity to stress) is a known risk factor for mental health difficulties. In this study, we investigated perceived daily stress and affective reactivity to stress in autistic (n = 39, age = 18.4) and non-autistic (n = 55, age = 18.1) adolescents and young adults. We used the ecological momentary assessment, a technique that allows to assess individuals repeatedly in their daily life using their smartphone. Moreover, participants filled a questionnaire to evaluate the strategies they use to regulate emotions when faced with difficulties. Finally, a clinical interview and a parent-report questionnaire were used to assess mental health symptoms. Autistic youth reported higher levels of perceived daily stress compared with non-autistic peers. Moreover, they showed increased affective reactivity to stress related to their daily activities. Autistic participants reported more emotion regulation difficulties (e.g. more repetitive thinking of difficulties) compared with non-autistic participants. Difficulties in emotion regulation increased negative emotions in relation to stress and might contribute to the severity of mental health symptoms. We conclude that adolescents and young adults with autism report high perceived stress in their daily lives. To minimize the negative impact of stress and the development of mental health symptoms, people supporting autistic young people could focus on stress management skills and the strategies that the youth use to manage emotions. En ligne : https://dx.doi.org/10.1177/13623613231204829 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531 [article] Cognitive emotion regulation difficulties increase affective reactivity to daily-life stress in autistic adolescents and young adults [Texte imprimé et/ou numérique] / Clémence FELLER, Auteur ; Maude SCHNEIDER, Auteur . - p.1703-1718. Langues : Anglais (eng) in Autism > 28-7 (July 2024) . - p.1703-1718 Mots-clés : adolescence  ecological momentary assessment  emotion regulation  mental health  negative affects  psychological stress Index. décimale : PER Périodiques Résumé : Increased reactivity to daily stressors is associated with mental health difficulties, which are common in autistic individuals. We investigated affective reactivity to daily-life stress, cognitive emotion regulation, and their link with co-occurring mental health symptoms in adolescents and young adults with autism. A 6-day ecological momentary assessment protocol was used to assess perceived daily-life stress (event-related, activity-related, and social stress) as well as negative affects in autistic (n = 39, age = 18.4) and non-autistic (n = 55, age = 18.1) participants. Co-occurring mental health difficulties, social functioning, and cognitive emotion regulation were assessed with questionnaires and clinical evaluations. Youth with autism showed higher levels of perceived stress related to their daily social context and activities, as well as an increased affective reactivity to activity-related stressors compared with non-autistic youth. Moreover, they reported using less adaptive and more non-adaptive emotion regulation, the latter increasing their affective response to daily stressors and possibly contributing to the severity of co-occurring mental health symptoms. Our findings demonstrate high perceived daily-life stress in autistic adolescents and young adults. To minimize the negative effects of stress and the development of mental health symptoms, interventions could focus on effective stress management and strategies that autistic young people use to manage their emotions. Lay abstract Previous research has shown that autistic individuals report high levels of perceived stress and have an increased likelihood of developing mental health difficulties. Increase in individuals' negative emotions in relation to perceived stress (i.e. affective reactivity to stress) is a known risk factor for mental health difficulties. In this study, we investigated perceived daily stress and affective reactivity to stress in autistic (n = 39, age = 18.4) and non-autistic (n = 55, age = 18.1) adolescents and young adults. We used the ecological momentary assessment, a technique that allows to assess individuals repeatedly in their daily life using their smartphone. Moreover, participants filled a questionnaire to evaluate the strategies they use to regulate emotions when faced with difficulties. Finally, a clinical interview and a parent-report questionnaire were used to assess mental health symptoms. Autistic youth reported higher levels of perceived daily stress compared with non-autistic peers. Moreover, they showed increased affective reactivity to stress related to their daily activities. Autistic participants reported more emotion regulation difficulties (e.g. more repetitive thinking of difficulties) compared with non-autistic participants. Difficulties in emotion regulation increased negative emotions in relation to stress and might contribute to the severity of mental health symptoms. We conclude that adolescents and young adults with autism report high perceived stress in their daily lives. To minimize the negative impact of stress and the development of mental health symptoms, people supporting autistic young people could focus on stress management skills and the strategies that the youth use to manage emotions. En ligne : https://dx.doi.org/10.1177/13623613231204829 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531

Contributing to an autism biobank: Diverse perspectives from autistic participants, family members and researchers / Hannah RAPAPORT ; Rebecca POULSEN ; Michael YUDELL ; Elizabeth PELLICANO in Autism, 28-7 (July 2024)  

Public ISBD [article]  inAutism > 28-7 (July 2024) . - p.1719-1731 Titre : Contributing to an autism biobank: Diverse perspectives from autistic participants, family members and researchers Type de document : Texte imprimé et/ou numérique Auteurs : Hannah RAPAPORT, Auteur ; Rebecca POULSEN, Auteur ; Michael YUDELL, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.1719-1731 Langues : Anglais (eng) Mots-clés : autism  biobanks  bioethics  biomarkers  genetics Index. décimale : PER Périodiques Résumé : There has been intense debate within the autistic and autism communities about the use of autism biobanks - repositories containing biological and phenotypic materials - and of genomic autism research more broadly. Here, we sought to understand the views and experiences of those contributing to one specific biobank, the Australian Autism Biobank. We adopted a multi-informant approach, conducting semi-structured interviews with 77 people, including 18 autistic probands, 46 parents and seven siblings, all of whom donated material to the Biobank, as well as six researchers employed on the project. Specifically, we asked: what motivated participants and researchers to contribute to the Australian Autism Biobank? And how did they feel about their involvement in that process? We analysed the data using reflexive thematic analysis, adopting an inductive approach within an essentialist framework. We identified three themes, which revealed a wide diversity of viewpoints, including positive conceptualisations of autism linked to neurodiversity and more negative conceptualisations linked to hopes for the development of genetic screening and reproductive choice. These findings have implications for the meaning, value and future directions of autism science. This research has been conducted using the Australian Autism Biobank resource. Lay abstract A lot of autism research has focused on finding genes that might cause autism. To conduct these genetic studies, researchers have created 'biobanks' - collections of biological samples (such as blood, saliva, urine, stool and hair) and other health information (such as cognitive assessments and medical histories). Our study focused on the Australian Autism Biobank, which collected biological and health information from almost 1000 Australian autistic children and their families. We wanted to know what people thought about giving their information to the Biobank and why they chose to do so. We spoke to 71 people who gave to the Biobank, including 18 autistic adolescents and young adults, 46 of their parents and seven of their siblings. We also spoke to six researchers who worked on the Biobank project. We found that people were interested in giving their information to the Biobank so they could understand why some people were autistic. Some people felt knowing why could help them make choices about having children in the future. People also wanted to be involved in the Biobank because they believed it could be a resource that could help others in the future. They also trusted that scientists would keep their information safe and were keen to know how that information might be used in the future. Our findings show that people have lots of different views about autism biobanks. We suggest researchers should listen to these different views as they develop their work. En ligne : https://dx.doi.org/10.1177/13623613231203938 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531 [article] Contributing to an autism biobank: Diverse perspectives from autistic participants, family members and researchers [Texte imprimé et/ou numérique] / Hannah RAPAPORT, Auteur ; Rebecca POULSEN, Auteur ; Michael YUDELL, Auteur ; Elizabeth PELLICANO, Auteur . - p.1719-1731. Langues : Anglais (eng) in Autism > 28-7 (July 2024) . - p.1719-1731 Mots-clés : autism  biobanks  bioethics  biomarkers  genetics Index. décimale : PER Périodiques Résumé : There has been intense debate within the autistic and autism communities about the use of autism biobanks - repositories containing biological and phenotypic materials - and of genomic autism research more broadly. Here, we sought to understand the views and experiences of those contributing to one specific biobank, the Australian Autism Biobank. We adopted a multi-informant approach, conducting semi-structured interviews with 77 people, including 18 autistic probands, 46 parents and seven siblings, all of whom donated material to the Biobank, as well as six researchers employed on the project. Specifically, we asked: what motivated participants and researchers to contribute to the Australian Autism Biobank? And how did they feel about their involvement in that process? We analysed the data using reflexive thematic analysis, adopting an inductive approach within an essentialist framework. We identified three themes, which revealed a wide diversity of viewpoints, including positive conceptualisations of autism linked to neurodiversity and more negative conceptualisations linked to hopes for the development of genetic screening and reproductive choice. These findings have implications for the meaning, value and future directions of autism science. This research has been conducted using the Australian Autism Biobank resource. Lay abstract A lot of autism research has focused on finding genes that might cause autism. To conduct these genetic studies, researchers have created 'biobanks' - collections of biological samples (such as blood, saliva, urine, stool and hair) and other health information (such as cognitive assessments and medical histories). Our study focused on the Australian Autism Biobank, which collected biological and health information from almost 1000 Australian autistic children and their families. We wanted to know what people thought about giving their information to the Biobank and why they chose to do so. We spoke to 71 people who gave to the Biobank, including 18 autistic adolescents and young adults, 46 of their parents and seven of their siblings. We also spoke to six researchers who worked on the Biobank project. We found that people were interested in giving their information to the Biobank so they could understand why some people were autistic. Some people felt knowing why could help them make choices about having children in the future. People also wanted to be involved in the Biobank because they believed it could be a resource that could help others in the future. They also trusted that scientists would keep their information safe and were keen to know how that information might be used in the future. Our findings show that people have lots of different views about autism biobanks. We suggest researchers should listen to these different views as they develop their work. En ligne : https://dx.doi.org/10.1177/13623613231203938 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531

Experiences of interpersonal victimization and abuse among autistic people / Felicity SEDGEWICK in Autism, 28-7 (July 2024)  

Public ISBD [article]  inAutism > 28-7 (July 2024) . - p.1732-1745 Titre : Experiences of interpersonal victimization and abuse among autistic people Type de document : Texte imprimé et/ou numérique Auteurs : Felicity SEDGEWICK, Auteur Article en page(s) : p.1732-1745 Langues : Anglais (eng) Mots-clés : autism  intimate partner violence  relationships  sexual assault Index. décimale : PER Périodiques Résumé : Intimate partner violence and sexual assault are under-researched experiences in autistic people?s lives. Recent research, however, has shown that autistic people are more likely to have been victimized than non-autistic people. This research, therefore, sought to explore the firsthand accounts of a range of autistic people about intimate partner violence and sexual assault. Twenty-four autistic adults with lived experience (6 male, 15 female, 3 non-binary) aged 25-61?years took part in semi-structured interviews online. They were asked about their experiences of intimate partner violence and sexual assault, whether and how they felt being autistic interacted with those experiences, and what recommendations they would have for improving education in the future. Almost all participants had repeated experiences of intimate partner violence and sexual assault, regardless of gender, and there were clear similarities in their stories. Six themes with subthemes were identified. These were 'experiences of abuse', 'autism used against you', 'poor family models', 'impact of/on friendships', 'handling trauma', and 'recommendations for future practice'. Autistic people experience many of the same patterns of abuse as non-autistic people do, but there are unique autism-related vulnerabilities and outcomes. We found that there were a variety of responses to these experiences, and call for greater understanding so that autistic victims can be better supported. Lay abstract What do we already know? Autistic people are more likely to have negative life experiences than non-autistic people, from bullying and ostracization, to being victims of crime, to unemployment and homelessness. This includes being victims of intimate partner violence, sexual assault and domestic abuse. Quantitative work has suggested that as many as 90% of autistic people experience these forms of abuse in some form during their lives, but there is little work asking them to talk about harmful relationships in their own words. What does this article add? This article reports on interviews with 24 autistic adults about their experiences of being victims of intimate partner violence, sexual assault and/or domestic abuse. Some of the themes which came from these interviews are shared with non-autistic victims, but others appeared unique to autistic people. One of these was evidence for unique autism-related vulnerabilities, as well as the impact the abuse had on their relationships long term. Participants also talked about how the sex and relationship education they had received had inadequately prepared them for adult relationships, and how this had contributed to their struggle to recognize and react to abusive behaviour. Implications for practice, research and policy Policies around intimate partner violence and sexual assault need to be updated to account for the different ways in which neurodivergent people (people whose brains process information differently from the majority) may discuss their experiences, rather than looking for 'standard narratives' as an indicator of a need for support. Relationship and sex education should be tailored for autistic young people to help them recognize abusive behaviours, and include how to respond to these safely. We recommend that future research tries to focus specifically on the abuse experiences of autistic men, non-binary and trans people, who have been under-represented in studies to date. In addition, much less is known about the abuse experiences of autistic people of colour or autistic people with intellectual disabilities, who also need to be actively included in these discussions. En ligne : https://dx.doi.org/10.1177/13623613231205630 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531 [article] Experiences of interpersonal victimization and abuse among autistic people [Texte imprimé et/ou numérique] / Felicity SEDGEWICK, Auteur . - p.1732-1745. Langues : Anglais (eng) in Autism > 28-7 (July 2024) . - p.1732-1745 Mots-clés : autism  intimate partner violence  relationships  sexual assault Index. décimale : PER Périodiques Résumé : Intimate partner violence and sexual assault are under-researched experiences in autistic people?s lives. Recent research, however, has shown that autistic people are more likely to have been victimized than non-autistic people. This research, therefore, sought to explore the firsthand accounts of a range of autistic people about intimate partner violence and sexual assault. Twenty-four autistic adults with lived experience (6 male, 15 female, 3 non-binary) aged 25-61?years took part in semi-structured interviews online. They were asked about their experiences of intimate partner violence and sexual assault, whether and how they felt being autistic interacted with those experiences, and what recommendations they would have for improving education in the future. Almost all participants had repeated experiences of intimate partner violence and sexual assault, regardless of gender, and there were clear similarities in their stories. Six themes with subthemes were identified. These were 'experiences of abuse', 'autism used against you', 'poor family models', 'impact of/on friendships', 'handling trauma', and 'recommendations for future practice'. Autistic people experience many of the same patterns of abuse as non-autistic people do, but there are unique autism-related vulnerabilities and outcomes. We found that there were a variety of responses to these experiences, and call for greater understanding so that autistic victims can be better supported. Lay abstract What do we already know? Autistic people are more likely to have negative life experiences than non-autistic people, from bullying and ostracization, to being victims of crime, to unemployment and homelessness. This includes being victims of intimate partner violence, sexual assault and domestic abuse. Quantitative work has suggested that as many as 90% of autistic people experience these forms of abuse in some form during their lives, but there is little work asking them to talk about harmful relationships in their own words. What does this article add? This article reports on interviews with 24 autistic adults about their experiences of being victims of intimate partner violence, sexual assault and/or domestic abuse. Some of the themes which came from these interviews are shared with non-autistic victims, but others appeared unique to autistic people. One of these was evidence for unique autism-related vulnerabilities, as well as the impact the abuse had on their relationships long term. Participants also talked about how the sex and relationship education they had received had inadequately prepared them for adult relationships, and how this had contributed to their struggle to recognize and react to abusive behaviour. Implications for practice, research and policy Policies around intimate partner violence and sexual assault need to be updated to account for the different ways in which neurodivergent people (people whose brains process information differently from the majority) may discuss their experiences, rather than looking for 'standard narratives' as an indicator of a need for support. Relationship and sex education should be tailored for autistic young people to help them recognize abusive behaviours, and include how to respond to these safely. We recommend that future research tries to focus specifically on the abuse experiences of autistic men, non-binary and trans people, who have been under-represented in studies to date. In addition, much less is known about the abuse experiences of autistic people of colour or autistic people with intellectual disabilities, who also need to be actively included in these discussions. En ligne : https://dx.doi.org/10.1177/13623613231205630 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531

Barriers to healthcare and a 'triple empathy problem' may lead to adverse outcomes for autistic adults: A qualitative study / Laura CARRAVALLAH ; Mona JOHNSON ; Jane O?SULLIVAN ; Nicholas CHOWN ; Stuart NEILSON ; Mary DOHERTY in Autism, 28-7 (July 2024)  

Public ISBD [article]  inAutism > 28-7 (July 2024) . - p.1746-1757 Titre : Barriers to healthcare and a 'triple empathy problem' may lead to adverse outcomes for autistic adults: A qualitative study Type de document : Texte imprimé et/ou numérique Auteurs : Laura CARRAVALLAH, Auteur ; Mona JOHNSON, Auteur ; Jane O?SULLIVAN, Auteur ; Nicholas CHOWN, Auteur ; Stuart NEILSON, Auteur ; Mary DOHERTY, Auteur Article en page(s) : p.1746-1757 Langues : Anglais (eng) Mots-clés : adults  autism  autistic  epistemic injustice  healthcare  health services  insider research  minority stress theory  qualitative research  triple empathy problem Index. décimale : PER Périodiques Résumé : Autistic people experience more co-occurring health conditions and, on average, die younger than non-autistic people. Despite growing awareness of health inequities, autistic people still report barriers to accessing healthcare. We aimed to explore the experiences of autistic people accessing healthcare, shining a light on the complex interplay of relevant factors and to explain, at least in part, the possible reasons underling health disparities and adverse health outcomes. This is a qualitative study from an autistic research team. Data were collected from 1248 autistic adults as part of a large, mixed-methods, international survey exploring barriers to primary healthcare. This article reports the qualitative findings, following a thematic analysis. Using our exploratory findings, we then constructed a model to explain the reported experiences. Respondents reported a variety of barriers. Here, our article gives voice to their stories, in their own words. Themes included: early barriers; communication mismatch; doubt - in oneself and from doctors; helplessness and fear; and healthcare avoidance and serious adverse health outcomes. Our constructed model outlines a chronological journey through which healthcare access barriers may lead to adverse health outcomes. Our findings also build on the double empathy problem, situating this in a medical context, proposing a triple empathy problem. Lay abstract Autistic people live with more mental and physical health conditions and, on average, die younger than non-autistic people. Despite widespread commitments to tackling these issues, autistic people still report various barriers to accessing healthcare. This article aims to explore the area in depth, from the perspective of autistic people. This research benefits from being led by autistic people, for autistic people - all of the researchers are autistic, and most of us are also medical doctors. Data, in the form of written comments and stories, were collected as part of a large survey. Here, we explored these for common themes and possible deeper meaning within the experiences. People who took part reported a variety of barriers. Here, our article gives voice to their stories, in their own words. Themes included: early barriers; communication mismatch; doubt - in oneself and from doctors; helplessness and fear; and healthcare avoidance and adverse health outcomes. Our findings allowed us to create a model that aimed to understand and explain the reported barriers in the context of the previously known consequences. We also built on wider autism theories to explain our findings in more depth. En ligne : https://dx.doi.org/10.1177/13623613231205629 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531 [article] Barriers to healthcare and a 'triple empathy problem' may lead to adverse outcomes for autistic adults: A qualitative study [Texte imprimé et/ou numérique] / Laura CARRAVALLAH, Auteur ; Mona JOHNSON, Auteur ; Jane O?SULLIVAN, Auteur ; Nicholas CHOWN, Auteur ; Stuart NEILSON, Auteur ; Mary DOHERTY, Auteur . - p.1746-1757. Langues : Anglais (eng) in Autism > 28-7 (July 2024) . - p.1746-1757 Mots-clés : adults  autism  autistic  epistemic injustice  healthcare  health services  insider research  minority stress theory  qualitative research  triple empathy problem Index. décimale : PER Périodiques Résumé : Autistic people experience more co-occurring health conditions and, on average, die younger than non-autistic people. Despite growing awareness of health inequities, autistic people still report barriers to accessing healthcare. We aimed to explore the experiences of autistic people accessing healthcare, shining a light on the complex interplay of relevant factors and to explain, at least in part, the possible reasons underling health disparities and adverse health outcomes. This is a qualitative study from an autistic research team. Data were collected from 1248 autistic adults as part of a large, mixed-methods, international survey exploring barriers to primary healthcare. This article reports the qualitative findings, following a thematic analysis. Using our exploratory findings, we then constructed a model to explain the reported experiences. Respondents reported a variety of barriers. Here, our article gives voice to their stories, in their own words. Themes included: early barriers; communication mismatch; doubt - in oneself and from doctors; helplessness and fear; and healthcare avoidance and serious adverse health outcomes. Our constructed model outlines a chronological journey through which healthcare access barriers may lead to adverse health outcomes. Our findings also build on the double empathy problem, situating this in a medical context, proposing a triple empathy problem. Lay abstract Autistic people live with more mental and physical health conditions and, on average, die younger than non-autistic people. Despite widespread commitments to tackling these issues, autistic people still report various barriers to accessing healthcare. This article aims to explore the area in depth, from the perspective of autistic people. This research benefits from being led by autistic people, for autistic people - all of the researchers are autistic, and most of us are also medical doctors. Data, in the form of written comments and stories, were collected as part of a large survey. Here, we explored these for common themes and possible deeper meaning within the experiences. People who took part reported a variety of barriers. Here, our article gives voice to their stories, in their own words. Themes included: early barriers; communication mismatch; doubt - in oneself and from doctors; helplessness and fear; and healthcare avoidance and adverse health outcomes. Our findings allowed us to create a model that aimed to understand and explain the reported barriers in the context of the previously known consequences. We also built on wider autism theories to explain our findings in more depth. En ligne : https://dx.doi.org/10.1177/13623613231205629 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531

Validity and feasibility of using the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) in primary care clinics in Singapore / Siew Pang CHAN ; Evelyn C. LAW ; Shang Chee CHONG ; Ramkumar AISHWORIYA in Autism, 28-7 (July 2024)  

Public ISBD [article]  inAutism > 28-7 (July 2024) . - p.1758-1771 Titre : Validity and feasibility of using the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) in primary care clinics in Singapore Type de document : Texte imprimé et/ou numérique Auteurs : Siew Pang CHAN, Auteur ; Evelyn C. LAW, Auteur ; Shang Chee CHONG, Auteur ; Ramkumar AISHWORIYA, Auteur Article en page(s) : p.1758-1771 Langues : Anglais (eng) Mots-clés : autism  autism spectrum disorder  children  Modified Checklist for Autism in Toddlers  Revised with Follow-Up  primary care  screening  M-CHAT-R/F Index. décimale : PER Périodiques Résumé : Screening for autism in childhood has been advocated as a part of standard care. Challenges exist with screening implementation and performance of screening tools in clinical practice. This study aimed to examine the validity and feasibility of using the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) for screening of autism in Singapore. Caregivers completed the M-CHAT-R/F as a part of the routine 18-month well-child visit in seven primary care clinics. Screening and follow-up interviews were administered by trained nursing staff. Children screened positive and a subset of those screened negative underwent diagnostic assessments for autism, which included an Autism Diagnostic Observation Schedule, Second Edition. Participants were 5336 multiethnic children (mean age 18.6?+?0.9?months, 51.3% male gender). In total, 113 (2.1%) were screened positive, of which 54 (1.0%) were classified to have autism after their diagnostic assessment. Sensitivity of the M-CHAT-R/F was 88.6%, specificity 71.4%, and positive predictive value 90.7% for an autism diagnosis. The majority of respondents rated the screening process as feasible within the clinic setting. The M-CHAT-R/F had acceptable psychometric properties and high feasibility when used in primary care settings in Singapore. Recommendations for implementation of systematic screening and future research are presented. Lay abstract Systematic screening for autism in early childhood has been suggested to improve eventual outcomes by facilitating earlier diagnosis and access to intervention. However, clinical implementation of screening has to take into account effectiveness and feasibility of use within a healthcare setting for accurate diagnosis of autism. In Singapore, autism screening using a structured screening tool is not currently employed as a part of routine well-child visits for children in primary care clinics. In this study, 5336 children (aged 17-20?months) were screened for autism using the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) during their 18-month well-child visit in seven primary care clinics. Screening and follow-up interviews were administered by nursing staff at each clinic. Children screened positive and a portion of those screened negative then underwent diagnostic assessments to determine whether they met the diagnostic criteria for autism. In total, 113 (2.1%) were screened positive, of which 54 (1.0%) met the criteria for autism. Children who screened positive and received a diagnosis accessed autism-specific intervention at an average age of 22?months. Nurses and physicians rated the acceptability and practicality of the M-CHAT-R/F highly. Therefore, the M-CHAT-R/F questionnaire was an effective and feasible tool for autism screening among 18-month-old children in this study. Future studies will be designed to determine the optimal age of screening and role of repeated screening in Singapore, as well as to better understand any potential improved outcomes nationwide compared with pre-implementation of autism screening. En ligne : https://dx.doi.org/10.1177/13623613231205748 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531 [article] Validity and feasibility of using the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) in primary care clinics in Singapore [Texte imprimé et/ou numérique] / Siew Pang CHAN, Auteur ; Evelyn C. LAW, Auteur ; Shang Chee CHONG, Auteur ; Ramkumar AISHWORIYA, Auteur . - p.1758-1771. Langues : Anglais (eng) in Autism > 28-7 (July 2024) . - p.1758-1771 Mots-clés : autism  autism spectrum disorder  children  Modified Checklist for Autism in Toddlers  Revised with Follow-Up  primary care  screening  M-CHAT-R/F Index. décimale : PER Périodiques Résumé : Screening for autism in childhood has been advocated as a part of standard care. Challenges exist with screening implementation and performance of screening tools in clinical practice. This study aimed to examine the validity and feasibility of using the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) for screening of autism in Singapore. Caregivers completed the M-CHAT-R/F as a part of the routine 18-month well-child visit in seven primary care clinics. Screening and follow-up interviews were administered by trained nursing staff. Children screened positive and a subset of those screened negative underwent diagnostic assessments for autism, which included an Autism Diagnostic Observation Schedule, Second Edition. Participants were 5336 multiethnic children (mean age 18.6?+?0.9?months, 51.3% male gender). In total, 113 (2.1%) were screened positive, of which 54 (1.0%) were classified to have autism after their diagnostic assessment. Sensitivity of the M-CHAT-R/F was 88.6%, specificity 71.4%, and positive predictive value 90.7% for an autism diagnosis. The majority of respondents rated the screening process as feasible within the clinic setting. The M-CHAT-R/F had acceptable psychometric properties and high feasibility when used in primary care settings in Singapore. Recommendations for implementation of systematic screening and future research are presented. Lay abstract Systematic screening for autism in early childhood has been suggested to improve eventual outcomes by facilitating earlier diagnosis and access to intervention. However, clinical implementation of screening has to take into account effectiveness and feasibility of use within a healthcare setting for accurate diagnosis of autism. In Singapore, autism screening using a structured screening tool is not currently employed as a part of routine well-child visits for children in primary care clinics. In this study, 5336 children (aged 17-20?months) were screened for autism using the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) during their 18-month well-child visit in seven primary care clinics. Screening and follow-up interviews were administered by nursing staff at each clinic. Children screened positive and a portion of those screened negative then underwent diagnostic assessments to determine whether they met the diagnostic criteria for autism. In total, 113 (2.1%) were screened positive, of which 54 (1.0%) met the criteria for autism. Children who screened positive and received a diagnosis accessed autism-specific intervention at an average age of 22?months. Nurses and physicians rated the acceptability and practicality of the M-CHAT-R/F highly. Therefore, the M-CHAT-R/F questionnaire was an effective and feasible tool for autism screening among 18-month-old children in this study. Future studies will be designed to determine the optimal age of screening and role of repeated screening in Singapore, as well as to better understand any potential improved outcomes nationwide compared with pre-implementation of autism screening. En ligne : https://dx.doi.org/10.1177/13623613231205748 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531

Coming out autistic at work: A review of the literature / Tia R. SCHULTZ ; Suzanne KUCHARCZYK ; Nancy WELSH-YOUNG in Autism, 28-7 (July 2024)  

Public ISBD [article]  inAutism > 28-7 (July 2024) . - p.1772-1784 Titre : Coming out autistic at work: A review of the literature Type de document : Texte imprimé et/ou numérique Auteurs : Tia R. SCHULTZ, Auteur ; Suzanne KUCHARCZYK, Auteur ; Nancy WELSH-YOUNG, Auteur Article en page(s) : p.1772-1784 Langues : Anglais (eng) Mots-clés : autism spectrum disorder  diagnosis  quality of life  vocational/labor force participation Index. décimale : PER Périodiques Résumé : Research consistently documents the negative postsecondary outcomes of autistic individuals. Identifying facilitators and barriers to obtaining and maintaining employment is imperative to improve postsecondary outcomes. Autism diagnosis disclosure at work may serve as a facilitator or barrier to obtaining and maintaining employment, but little is known about the lived experiences of individuals on the spectrum regarding diagnosis disclosure at work. To ascertain why autistic individuals choose to pursue disclosure or choose not to disclose at work, how they disclose, and the consequences of that disclosure, a state-of-the-art literature review was conducted. Ten studies met the final inclusion criteria and were synthesized to provide guidance to autistic individuals, families, and professionals who support autistic individuals' transition to employment. Lay abstract Research consistently documents the poor postsecondary outcomes of autistic individuals. It is important to identify supports that help autistic individuals get and keep jobs to improve postsecondary outcomes. Autism diagnosis disclosure at work may serve as a support (e.g., receiving accommodations) or as a barrier (e.g., discrimination) to getting and keeping employment, but little is known about the lived experiences of autistic individuals on diagnosis disclosure at work. To better understand why individuals on the spectrum choose to pursue disclosure or choose not to disclose at work, how they disclose, and the consequences of that disclosure, a state-of-the-art literature review was conducted. Ten studies met the final inclusion criteria and were synthesized to provide guidance to autistic individuals, families, and professionals who support their transition to employment. Findings from the review indicate that diagnosis disclosure is a highly complex decision. Across reviewed studies, participants chose to pursue disclosure for specific reasons, including access to accommodations or support, increase understanding, and advocate for self or others. Autistic individuals participating across reviewed studies shared they chose not to disclose primarily due to fears of discrimination and experience of stigma. Both the hopes (access to accommodations and supports) and fears (bullying and discrimination) were validated in the experienced consequences of disclosure. More research is needed on the contextual experiences of how individuals on the spectrum disclose their diagnosis at work. En ligne : https://dx.doi.org/10.1177/13623613231206420 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531 [article] Coming out autistic at work: A review of the literature [Texte imprimé et/ou numérique] / Tia R. SCHULTZ, Auteur ; Suzanne KUCHARCZYK, Auteur ; Nancy WELSH-YOUNG, Auteur . - p.1772-1784. Langues : Anglais (eng) in Autism > 28-7 (July 2024) . - p.1772-1784 Mots-clés : autism spectrum disorder  diagnosis  quality of life  vocational/labor force participation Index. décimale : PER Périodiques Résumé : Research consistently documents the negative postsecondary outcomes of autistic individuals. Identifying facilitators and barriers to obtaining and maintaining employment is imperative to improve postsecondary outcomes. Autism diagnosis disclosure at work may serve as a facilitator or barrier to obtaining and maintaining employment, but little is known about the lived experiences of individuals on the spectrum regarding diagnosis disclosure at work. To ascertain why autistic individuals choose to pursue disclosure or choose not to disclose at work, how they disclose, and the consequences of that disclosure, a state-of-the-art literature review was conducted. Ten studies met the final inclusion criteria and were synthesized to provide guidance to autistic individuals, families, and professionals who support autistic individuals' transition to employment. Lay abstract Research consistently documents the poor postsecondary outcomes of autistic individuals. It is important to identify supports that help autistic individuals get and keep jobs to improve postsecondary outcomes. Autism diagnosis disclosure at work may serve as a support (e.g., receiving accommodations) or as a barrier (e.g., discrimination) to getting and keeping employment, but little is known about the lived experiences of autistic individuals on diagnosis disclosure at work. To better understand why individuals on the spectrum choose to pursue disclosure or choose not to disclose at work, how they disclose, and the consequences of that disclosure, a state-of-the-art literature review was conducted. Ten studies met the final inclusion criteria and were synthesized to provide guidance to autistic individuals, families, and professionals who support their transition to employment. Findings from the review indicate that diagnosis disclosure is a highly complex decision. Across reviewed studies, participants chose to pursue disclosure for specific reasons, including access to accommodations or support, increase understanding, and advocate for self or others. Autistic individuals participating across reviewed studies shared they chose not to disclose primarily due to fears of discrimination and experience of stigma. Both the hopes (access to accommodations and supports) and fears (bullying and discrimination) were validated in the experienced consequences of disclosure. More research is needed on the contextual experiences of how individuals on the spectrum disclose their diagnosis at work. En ligne : https://dx.doi.org/10.1177/13623613231206420 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531

Diabetes mellitus in privately insured autistic adults in the United States / Brittany N. HAND in Autism, 28-7 (July 2024)  

Public ISBD [article]  inAutism > 28-7 (July 2024) . - p.1785-1794 Titre : Diabetes mellitus in privately insured autistic adults in the United States Type de document : Texte imprimé et/ou numérique Auteurs : Brittany N. HAND, Auteur Article en page(s) : p.1785-1794 Langues : Anglais (eng) Mots-clés : autism  diabetes  medical co-morbidity Index. décimale : PER Périodiques Résumé : Diabetes mellitus is a challenging chronic health condition at the forefront of attention of the healthcare system. Important estimates quantifying how diabetes prevalence varies by age are available for the general population, but these estimates are poorly characterized among autistic adults. Improved diabetes prevalence and likelihood estimates are needed to understand the impact of diabetes on this population. We analyzed IBM MarketScan health claims data from 2019 to 2020 to estimate diabetes prevalence among privately insured autistic (N = 54,500) and non-autistic adults (N = 109,000) and estimate autistic adults' likelihood of diabetes relative to non-autistic adults at 5-year age intervals (e.g. 18-22 to 23-27) when controlling for demographic factors. Diabetes prevalence was 5.15% for autistic adults and 3.07% for non-autistic adults. Autistic adults had a higher likelihood of diabetes than non-autistic adults at most 5-year age intervals, with the greatest difference at ages 23-37 (odds ratio = 2.67; 95% confidence interval = 2.33-3.06). Our findings suggest that autistic adults may be more likely than non-autistic adults to experience diabetes. Thus, development of diabetes support services and programs that accommodate autistic adults' individualized needs are important for future study to promote optimal diabetes outcomes for this population. Lay abstract Diabetes is a chronic health condition that is challenging to manage. Estimates of how common diabetes is among non-autistic adults are available, but improved estimates for autistic adults are needed. The purpose of this study was to obtain improved diabetes estimates for autistic adults. We analyzed a large private health insurance claims database to estimate how common diabetes was among autistic adults, and how likely autistic adults were to have diabetes compared to non-autistic adults at 5-year age intervals throughout adulthood (e.g. 18-22, 23-27). We found that diabetes was more common among autistic adults than non-autistic adults and that autistic adults were significantly more likely than non-autistic adults to have diabetes throughout most of adulthood. Our findings suggest that autistic adults may be more likely than non-autistic adults to experience diabetes in adulthood. The development of diabetes support services and programs that accommodate autistic adults' individual needs are important for future study to promote positive diabetes outcomes for autistic adults. En ligne : https://dx.doi.org/10.1177/13623613231206421 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531 [article] Diabetes mellitus in privately insured autistic adults in the United States [Texte imprimé et/ou numérique] / Brittany N. HAND, Auteur . - p.1785-1794. Langues : Anglais (eng) in Autism > 28-7 (July 2024) . - p.1785-1794 Mots-clés : autism  diabetes  medical co-morbidity Index. décimale : PER Périodiques Résumé : Diabetes mellitus is a challenging chronic health condition at the forefront of attention of the healthcare system. Important estimates quantifying how diabetes prevalence varies by age are available for the general population, but these estimates are poorly characterized among autistic adults. Improved diabetes prevalence and likelihood estimates are needed to understand the impact of diabetes on this population. We analyzed IBM MarketScan health claims data from 2019 to 2020 to estimate diabetes prevalence among privately insured autistic (N = 54,500) and non-autistic adults (N = 109,000) and estimate autistic adults' likelihood of diabetes relative to non-autistic adults at 5-year age intervals (e.g. 18-22 to 23-27) when controlling for demographic factors. Diabetes prevalence was 5.15% for autistic adults and 3.07% for non-autistic adults. Autistic adults had a higher likelihood of diabetes than non-autistic adults at most 5-year age intervals, with the greatest difference at ages 23-37 (odds ratio = 2.67; 95% confidence interval = 2.33-3.06). Our findings suggest that autistic adults may be more likely than non-autistic adults to experience diabetes. Thus, development of diabetes support services and programs that accommodate autistic adults' individualized needs are important for future study to promote optimal diabetes outcomes for this population. Lay abstract Diabetes is a chronic health condition that is challenging to manage. Estimates of how common diabetes is among non-autistic adults are available, but improved estimates for autistic adults are needed. The purpose of this study was to obtain improved diabetes estimates for autistic adults. We analyzed a large private health insurance claims database to estimate how common diabetes was among autistic adults, and how likely autistic adults were to have diabetes compared to non-autistic adults at 5-year age intervals throughout adulthood (e.g. 18-22, 23-27). We found that diabetes was more common among autistic adults than non-autistic adults and that autistic adults were significantly more likely than non-autistic adults to have diabetes throughout most of adulthood. Our findings suggest that autistic adults may be more likely than non-autistic adults to experience diabetes in adulthood. The development of diabetes support services and programs that accommodate autistic adults' individual needs are important for future study to promote positive diabetes outcomes for autistic adults. En ligne : https://dx.doi.org/10.1177/13623613231206421 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531

Bilingual exposure might enhance L1 development in Cantonese-English bilingual autistic children: Evidence from the production of focus / Albert Kwing Lok LEE ; Hoi Kwan YUEN ; Fang LIU ; Virginia YIP in Autism, 28-7 (July 2024)  

Public ISBD [article]  inAutism > 28-7 (July 2024) . - p.1795-1808 Titre : Bilingual exposure might enhance L1 development in Cantonese-English bilingual autistic children: Evidence from the production of focus Type de document : Texte imprimé et/ou numérique Auteurs : Albert Kwing Lok LEE, Auteur ; Hoi Kwan YUEN, Auteur ; Fang LIU, Auteur ; Virginia YIP, Auteur Article en page(s) : p.1795-1808 Langues : Anglais (eng) Mots-clés : autism spectrum disorders  bilingualism  production of focus Index. décimale : PER Périodiques Résumé : This study investigated bilingualism effects on the production of focus in 5- to 9-year-old Cantonese-English bilingual autistic children?s L1 Cantonese, compared to their monolingual autistic peers as well as monolingual and bilingual typically developing children matched in nonverbal IQ, working memory, receptive vocabulary and maternal education. The results from an elicitation task showed that monolingual autistic children had significantly lower accuracy than typically developing children in producing focus in subject and object positions. Bilingual autistic children in general performed similarly to monolingual autistic children but outperformed their monolingual autistic peers in the production of object focus with a significantly higher accuracy. The total amount of English exposure did not relate to the accuracy of focus production in autistic and typically developing children. Our results also revealed autistic children?s tendency to make use of less prosodic means to produce focus. The overall findings indicate that bilingual exposure has no detrimental effect on the language skills of autistic children but might enhance the production of focus in bilingual autistic children?s L1 Cantonese. Lay abstract It is commonly believed among professionals and parents that exposure to two languages imposes an additional burden on children with autism spectrum disorder. However, there is a lack of empirical evidence to support or reject this belief. With the prevalence of autism and an increasing number of children growing up bilingual, it is urgent to understand how bilingual exposure interacts with autism. Bilingual autistic children from Hong Kong, with Cantonese as their first language and English as their second language, took part in the study. We used a production game to test how bilingual autistic children use different levels of linguistic knowledge to produce contrastive information in real conversations, compared to their monolingual autistic peers and typically developing children matched in language abilities, nonverbal IQ, working memory and maternal education. We found that bilingual autistic children performed as good as typically developing children in general, and they even performed better than monolingual autistic children. Our findings suggest a bilingual advantage in autistic children in conveying constative information in sentences. We thus encourage parents to engage their children in rich bilingual environments. Clinicians, educators and other professionals may also consider adding bilingual aspects in training programmes to support families raising bilingual autistic children. En ligne : https://dx.doi.org/10.1177/13623613231207449 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=532 [article] Bilingual exposure might enhance L1 development in Cantonese-English bilingual autistic children: Evidence from the production of focus [Texte imprimé et/ou numérique] / Albert Kwing Lok LEE, Auteur ; Hoi Kwan YUEN, Auteur ; Fang LIU, Auteur ; Virginia YIP, Auteur . - p.1795-1808. Langues : Anglais (eng) in Autism > 28-7 (July 2024) . - p.1795-1808 Mots-clés : autism spectrum disorders  bilingualism  production of focus Index. décimale : PER Périodiques Résumé : This study investigated bilingualism effects on the production of focus in 5- to 9-year-old Cantonese-English bilingual autistic children?s L1 Cantonese, compared to their monolingual autistic peers as well as monolingual and bilingual typically developing children matched in nonverbal IQ, working memory, receptive vocabulary and maternal education. The results from an elicitation task showed that monolingual autistic children had significantly lower accuracy than typically developing children in producing focus in subject and object positions. Bilingual autistic children in general performed similarly to monolingual autistic children but outperformed their monolingual autistic peers in the production of object focus with a significantly higher accuracy. The total amount of English exposure did not relate to the accuracy of focus production in autistic and typically developing children. Our results also revealed autistic children?s tendency to make use of less prosodic means to produce focus. The overall findings indicate that bilingual exposure has no detrimental effect on the language skills of autistic children but might enhance the production of focus in bilingual autistic children?s L1 Cantonese. Lay abstract It is commonly believed among professionals and parents that exposure to two languages imposes an additional burden on children with autism spectrum disorder. However, there is a lack of empirical evidence to support or reject this belief. With the prevalence of autism and an increasing number of children growing up bilingual, it is urgent to understand how bilingual exposure interacts with autism. Bilingual autistic children from Hong Kong, with Cantonese as their first language and English as their second language, took part in the study. We used a production game to test how bilingual autistic children use different levels of linguistic knowledge to produce contrastive information in real conversations, compared to their monolingual autistic peers and typically developing children matched in language abilities, nonverbal IQ, working memory and maternal education. We found that bilingual autistic children performed as good as typically developing children in general, and they even performed better than monolingual autistic children. Our findings suggest a bilingual advantage in autistic children in conveying constative information in sentences. We thus encourage parents to engage their children in rich bilingual environments. Clinicians, educators and other professionals may also consider adding bilingual aspects in training programmes to support families raising bilingual autistic children. En ligne : https://dx.doi.org/10.1177/13623613231207449 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=532

Toward a strengths-based model for designing virtual reality learning experiences for autistic users / Nigel NEWBUTT ; Minyoung LEE ; Jie LU ; Marc-Sonley FRANCOIS ; Pavlo D. ANTONENKO ; Noah GLASER in Autism, 28-7 (July 2024)  

Public ISBD [article]  inAutism > 28-7 (July 2024) . - p.1809-1827 Titre : Toward a strengths-based model for designing virtual reality learning experiences for autistic users Type de document : Texte imprimé et/ou numérique Auteurs : Nigel NEWBUTT, Auteur ; Minyoung LEE, Auteur ; Jie LU, Auteur ; Marc-Sonley FRANCOIS, Auteur ; Pavlo D. ANTONENKO, Auteur ; Noah GLASER, Auteur Article en page(s) : p.1809-1827 Langues : Anglais (eng) Mots-clés : autism  design framework  strengths-based approach  user-centered design  virtual reality Index. décimale : PER Périodiques Résumé : This study presents a strengths-based framework for designing virtual reality experiences tailored to the needs and abilities of autistic individuals. Recognizing the potential of virtual reality to provide engaging and immersive learning environments, the framework aligns the strengths and preferences of autistic users with the affordances of virtual reality platforms. Drawing on the existing literature and empirical findings, the framework highlights key areas of alignment, including visual perception, anxiety management, attention to differences, concrete thinking, and response to positive feedback. The framework emphasizes the importance of involving autistic individuals in the co-design and co-creation of virtual reality technologies to ensure a more tailored and preferred user experience. By adopting a strengths-based approach and actively involving autistic individuals, the design and implementation of virtual reality interventions can better address their unique needs and foster positive outcomes. The study concludes by advocating for continued research and collaboration to advance the field of virtual reality technology for autistic individuals and to work toward shared goals with the autistic community. Lay abstract Virtual reality has been studied for its potential in supporting individuals with autism, but existing research often focuses on deficits and lacks consideration of individual preferences and strengths. This article introduces a framework that emphasizes the strengths and abilities of autistic individuals when designing virtual reality interventions. It builds upon an existing taxonomy of educational technology affordances and extends it to align with the unique needs of autistic individuals. The framework provides guidance for incorporating virtual reality technology that supports and amplifies autistic strengths, such as visual perception and response to positive feedback. The framework has implications for practice, research, and policy. For practitioners, it offers a tool for designing virtual reality experiences that cater to the strengths of autistic individuals, enhancing engagement and educational outcomes. Researchers can utilize the framework to guide the development of user-centered virtual reality interventions and expand our understanding of the potential benefits of virtual reality for autistic populations. Policymakers and educators can consider this framework when incorporating virtual reality into educational settings, ensuring that virtual reality technology is used in a way that aligns with the strengths and needs of autistic learners. Overall, the framework promotes a strengths-based approach in utilizing virtual reality technology for individuals with autism, fostering inclusivity and maximizing the benefits of immersive experiences. En ligne : https://dx.doi.org/10.1177/13623613231208579 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=532 [article] Toward a strengths-based model for designing virtual reality learning experiences for autistic users [Texte imprimé et/ou numérique] / Nigel NEWBUTT, Auteur ; Minyoung LEE, Auteur ; Jie LU, Auteur ; Marc-Sonley FRANCOIS, Auteur ; Pavlo D. ANTONENKO, Auteur ; Noah GLASER, Auteur . - p.1809-1827. Langues : Anglais (eng) in Autism > 28-7 (July 2024) . - p.1809-1827 Mots-clés : autism  design framework  strengths-based approach  user-centered design  virtual reality Index. décimale : PER Périodiques Résumé : This study presents a strengths-based framework for designing virtual reality experiences tailored to the needs and abilities of autistic individuals. Recognizing the potential of virtual reality to provide engaging and immersive learning environments, the framework aligns the strengths and preferences of autistic users with the affordances of virtual reality platforms. Drawing on the existing literature and empirical findings, the framework highlights key areas of alignment, including visual perception, anxiety management, attention to differences, concrete thinking, and response to positive feedback. The framework emphasizes the importance of involving autistic individuals in the co-design and co-creation of virtual reality technologies to ensure a more tailored and preferred user experience. By adopting a strengths-based approach and actively involving autistic individuals, the design and implementation of virtual reality interventions can better address their unique needs and foster positive outcomes. The study concludes by advocating for continued research and collaboration to advance the field of virtual reality technology for autistic individuals and to work toward shared goals with the autistic community. Lay abstract Virtual reality has been studied for its potential in supporting individuals with autism, but existing research often focuses on deficits and lacks consideration of individual preferences and strengths. This article introduces a framework that emphasizes the strengths and abilities of autistic individuals when designing virtual reality interventions. It builds upon an existing taxonomy of educational technology affordances and extends it to align with the unique needs of autistic individuals. The framework provides guidance for incorporating virtual reality technology that supports and amplifies autistic strengths, such as visual perception and response to positive feedback. The framework has implications for practice, research, and policy. For practitioners, it offers a tool for designing virtual reality experiences that cater to the strengths of autistic individuals, enhancing engagement and educational outcomes. Researchers can utilize the framework to guide the development of user-centered virtual reality interventions and expand our understanding of the potential benefits of virtual reality for autistic populations. Policymakers and educators can consider this framework when incorporating virtual reality into educational settings, ensuring that virtual reality technology is used in a way that aligns with the strengths and needs of autistic learners. Overall, the framework promotes a strengths-based approach in utilizing virtual reality technology for individuals with autism, fostering inclusivity and maximizing the benefits of immersive experiences. En ligne : https://dx.doi.org/10.1177/13623613231208579 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=532

Mindreading beliefs in same- and cross-neurotype interactions / Sophie WEBB ; Helen WILKINSON in Autism, 28-7 (July 2024)  

Public ISBD [article]  inAutism > 28-7 (July 2024) . - p.1828-1837 Titre : Mindreading beliefs in same- and cross-neurotype interactions Type de document : Texte imprimé et/ou numérique Auteurs : Sophie WEBB, Auteur ; Helen WILKINSON, Auteur Article en page(s) : p.1828-1837 Langues : Anglais (eng) Mots-clés : autism  double empathy  mindreading beliefs Index. décimale : PER Périodiques Résumé : A large sample of autistic and non-autistic adults was recruited to investigate whether self-reported beliefs about their own and other people?s mindreading abilities were in line with either mindreading deficit accounts of autism or the double empathy problem (DEP) (which proposes mindreading difficulties are relational in autism). Three hundred and forty-eight (139 autistic) participants completed an online questionnaire which asked about autism identification and diagnostic status and their beliefs about their own mindreading abilities in relation to autistic and non-autistic others, and about autistic and non-autistic others' abilities to read their (the participant?s) own minds. While autistic participants did report weaker mindreading abilities, this was only true in relation to non-autistic others. Both groups reported better mindreading abilities in same- than other-neurotype interactions, with autistic participants reporting mindreading abilities commensurate with non-autistic participants in relation to autistic targets. The same pattern was found when participants were asked about other people?s mindreading abilities. The findings were more consistent with the DEP than deficit theories, as the target reference group strongly impacted participants' perceived mindreading abilities. While self-reported beliefs do not necessarily reflect actual mindreading abilities, they may still have important consequences for intergroup relations and social outcomes for autistic people. Lay Abstract Autistic people are often characterised as having problems with mindreading, which refers to understanding other people?s thoughts, beliefs and feelings. However, it has recently been suggested that mindreading difficulties may be a two-way issue between autistic and non-autistic people. This would imply that autistic people may not have difficulty reading the minds of other autistic people, whereas non-autistic people may struggle to read autistic people effectively. In this study, we created a survey in which we asked a relatively large sample of autistic and non-autistic people to rate their own and others' mindreading abilities in relation to autistic and non-autistic others, respectively. Both groups believed that they were better at reading others in their own group than the other group. The autistic respondents reported levels of mindreading skill at least commensurate with the non-autistic respondents when the mind to be read was specified as autistic. Thus, both groups of participants' responses were consistent with the notion that mindreading abilities are relational. Although self-reports are subjective, such beliefs could have important consequences for well-being and intergroup relations. En ligne : https://dx.doi.org/10.1177/13623613231211457 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=532 [article] Mindreading beliefs in same- and cross-neurotype interactions [Texte imprimé et/ou numérique] / Sophie WEBB, Auteur ; Helen WILKINSON, Auteur . - p.1828-1837. Langues : Anglais (eng) in Autism > 28-7 (July 2024) . - p.1828-1837 Mots-clés : autism  double empathy  mindreading beliefs Index. décimale : PER Périodiques Résumé : A large sample of autistic and non-autistic adults was recruited to investigate whether self-reported beliefs about their own and other people?s mindreading abilities were in line with either mindreading deficit accounts of autism or the double empathy problem (DEP) (which proposes mindreading difficulties are relational in autism). Three hundred and forty-eight (139 autistic) participants completed an online questionnaire which asked about autism identification and diagnostic status and their beliefs about their own mindreading abilities in relation to autistic and non-autistic others, and about autistic and non-autistic others' abilities to read their (the participant?s) own minds. While autistic participants did report weaker mindreading abilities, this was only true in relation to non-autistic others. Both groups reported better mindreading abilities in same- than other-neurotype interactions, with autistic participants reporting mindreading abilities commensurate with non-autistic participants in relation to autistic targets. The same pattern was found when participants were asked about other people?s mindreading abilities. The findings were more consistent with the DEP than deficit theories, as the target reference group strongly impacted participants' perceived mindreading abilities. While self-reported beliefs do not necessarily reflect actual mindreading abilities, they may still have important consequences for intergroup relations and social outcomes for autistic people. Lay Abstract Autistic people are often characterised as having problems with mindreading, which refers to understanding other people?s thoughts, beliefs and feelings. However, it has recently been suggested that mindreading difficulties may be a two-way issue between autistic and non-autistic people. This would imply that autistic people may not have difficulty reading the minds of other autistic people, whereas non-autistic people may struggle to read autistic people effectively. In this study, we created a survey in which we asked a relatively large sample of autistic and non-autistic people to rate their own and others' mindreading abilities in relation to autistic and non-autistic others, respectively. Both groups believed that they were better at reading others in their own group than the other group. The autistic respondents reported levels of mindreading skill at least commensurate with the non-autistic respondents when the mind to be read was specified as autistic. Thus, both groups of participants' responses were consistent with the notion that mindreading abilities are relational. Although self-reports are subjective, such beliefs could have important consequences for well-being and intergroup relations. En ligne : https://dx.doi.org/10.1177/13623613231211457 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=532

What do parents of nonverbal and minimally verbal autistic children think about genomic autism research? / Umar TOSEEB ; Naomi BARROW in Autism, 28-7 (July 2024)  

Public ISBD [article]  inAutism > 28-7 (July 2024) . - p.1838-1846 Titre : What do parents of nonverbal and minimally verbal autistic children think about genomic autism research? Type de document : Texte imprimé et/ou numérique Auteurs : Umar TOSEEB, Auteur ; Naomi BARROW, Auteur Article en page(s) : p.1838-1846 Langues : Anglais (eng) Mots-clés : autism  genomics  Genome-Wide Association Studies  inclusion  minimally verbal  nonverbal  qualitative  Spectrum 10 K Index. décimale : PER Périodiques Résumé : Concerns have been raised about genomic studies of autism. Most recently, the Spectrum 10?K study was paused due to criticism from the autistic community. This situation raised important questions about how the autistic and autism communities perceive genomic research. The Personal Experiences of Autism and Perceptions of DNA-based-research study was established to address this issue. Twenty parents of nonverbal or minimally verbal autistic children took part in the current study. Data were provided in diverse formats including online interviews, telephone interviews, and writing. This approach was co-produced with autistic experts by experience. Data were analysed using reflexive Thematic Analysis. We found that participants were supportive of autism research, including some genomic research, if it is designed to support autistic people and is ethical and transparent. However, while some believed that polygenic scores, genomic predictors of the statistical probability of being autistic, would be helpful, others argued that this would only be true in an ideal world. Participants felt that they and their children were often excluded from, and unrepresented by, the autistic and autism communities. We conclude that genomic researchers need to work with the autistic and autism communities to design future work, and that it is important to ensure a representative range of voices are heard. Lay abstract In Summer 2021, a genomic study of autism, Spectrum 10?K, was paused due to backlash from the autistic and autism communities. This raised important questions about how these communities perceive genomic research. The Personal Experiences of Autism and Perceptions of DNA-based research study was established to address this issue among a range of sub-groups within these communities. Twenty parents of nonverbal or minimally verbal autistic children took part in the current study. Data were provided in diverse formats including online interviews, telephone interviews, and writing. This approach was co-produced with autistic experts by experience and involved a parent of a minimally verbal autistic child. Data were analysed using reflexive Thematic Analysis. We found that participants were supportive of autism research, including some genomic research, as long as it is designed to support autistic people and is ethical and transparent. However, while some believed that polygenic scores, genomic predictors of the statistical probability of being autistic, would be helpful, others argued that this would only be true in an ideal world and that the world is too far from ideal. Participants felt excluded from the autistic and autism communities and that the dominant voices in those communities do not represent them or their children. We concluded that genomic researchers need to work with the autistic and autism communities to design future work, and that it is important to ensure a representative range of voices are heard. En ligne : https://dx.doi.org/10.1177/13623613231213431 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=532 [article] What do parents of nonverbal and minimally verbal autistic children think about genomic autism research? [Texte imprimé et/ou numérique] / Umar TOSEEB, Auteur ; Naomi BARROW, Auteur . - p.1838-1846. Langues : Anglais (eng) in Autism > 28-7 (July 2024) . - p.1838-1846 Mots-clés : autism  genomics  Genome-Wide Association Studies  inclusion  minimally verbal  nonverbal  qualitative  Spectrum 10 K Index. décimale : PER Périodiques Résumé : Concerns have been raised about genomic studies of autism. Most recently, the Spectrum 10?K study was paused due to criticism from the autistic community. This situation raised important questions about how the autistic and autism communities perceive genomic research. The Personal Experiences of Autism and Perceptions of DNA-based-research study was established to address this issue. Twenty parents of nonverbal or minimally verbal autistic children took part in the current study. Data were provided in diverse formats including online interviews, telephone interviews, and writing. This approach was co-produced with autistic experts by experience. Data were analysed using reflexive Thematic Analysis. We found that participants were supportive of autism research, including some genomic research, if it is designed to support autistic people and is ethical and transparent. However, while some believed that polygenic scores, genomic predictors of the statistical probability of being autistic, would be helpful, others argued that this would only be true in an ideal world. Participants felt that they and their children were often excluded from, and unrepresented by, the autistic and autism communities. We conclude that genomic researchers need to work with the autistic and autism communities to design future work, and that it is important to ensure a representative range of voices are heard. Lay abstract In Summer 2021, a genomic study of autism, Spectrum 10?K, was paused due to backlash from the autistic and autism communities. This raised important questions about how these communities perceive genomic research. The Personal Experiences of Autism and Perceptions of DNA-based research study was established to address this issue among a range of sub-groups within these communities. Twenty parents of nonverbal or minimally verbal autistic children took part in the current study. Data were provided in diverse formats including online interviews, telephone interviews, and writing. This approach was co-produced with autistic experts by experience and involved a parent of a minimally verbal autistic child. Data were analysed using reflexive Thematic Analysis. We found that participants were supportive of autism research, including some genomic research, as long as it is designed to support autistic people and is ethical and transparent. However, while some believed that polygenic scores, genomic predictors of the statistical probability of being autistic, would be helpful, others argued that this would only be true in an ideal world and that the world is too far from ideal. Participants felt excluded from the autistic and autism communities and that the dominant voices in those communities do not represent them or their children. We concluded that genomic researchers need to work with the autistic and autism communities to design future work, and that it is important to ensure a representative range of voices are heard. En ligne : https://dx.doi.org/10.1177/13623613231213431 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=532

Characterizing mechanisms of caregiver-mediated naturalistic developmental behavioral interventions for autistic toddlers: A randomized clinical trial / Bailey J. SONE ; Jeffrey GRAUZER ; Laura SUDEC ; Aaron KAAT ; Megan Y. ROBERTS in Autism, 28-7 (July 2024)  

Public ISBD [article]  inAutism > 28-7 (July 2024) . - p.1847-1860 Titre : Characterizing mechanisms of caregiver-mediated naturalistic developmental behavioral interventions for autistic toddlers: A randomized clinical trial Type de document : Texte imprimé et/ou numérique Auteurs : Bailey J. SONE, Auteur ; Jeffrey GRAUZER, Auteur ; Laura SUDEC, Auteur ; Aaron KAAT, Auteur ; Megan Y. ROBERTS, Auteur Article en page(s) : p.1847-1860 Langues : Anglais (eng) Mots-clés : autism spectrum disorders  communication and language  interventions-psychosocial/behavioral Index. décimale : PER Périodiques Résumé : To address the variability of naturalistic developmental behavioral intervention outcomes, the current study sought to isolate the effects of the instructional strategies of caregiver-mediated naturalistic developmental behavioral interventions. In this comparative efficacy trial, mothers of 111 autistic children (18-48?months) were randomized to learn one of two sets of naturalistic developmental behavioral intervention language facilitation strategies (responsive or directive). We aimed to characterize the effect of strategy type on language outcomes and explore the extent to which joint engagement outcomes mediated language outcomes. Children in the directive condition had significantly greater scores across multiple language assessments. At follow-up, the effect of strategy type on the frequency of spontaneous directed communication acts was fully mediated by coordinated joint engagement (indirect effect = ?2.070, 95% CI = [?4.394, ?0.06], p <0.05). Thus, children may benefit from caregiver prompts to facilitate long-term language outcomes. The current study is an initial step in the identification of the mechanisms of caregiver-mediated NDBIs. Lay abstract Caregiver-mediated early interventions support caregivers' use of strategies to improve their young autistic child?s communication. In the current clinical trial, we sought to isolate the most effective strategies to improve short-term and long-term child communication outcomes. Results demonstrated how children may benefit from caregiver prompts to facilitate long-term language outcomes. In conclusion, the current study improves our understanding of how early intervention facilitates child communication outcomes. En ligne : https://dx.doi.org/10.1177/13623613231213283 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=532 [article] Characterizing mechanisms of caregiver-mediated naturalistic developmental behavioral interventions for autistic toddlers: A randomized clinical trial [Texte imprimé et/ou numérique] / Bailey J. SONE, Auteur ; Jeffrey GRAUZER, Auteur ; Laura SUDEC, Auteur ; Aaron KAAT, Auteur ; Megan Y. ROBERTS, Auteur . - p.1847-1860. Langues : Anglais (eng) in Autism > 28-7 (July 2024) . - p.1847-1860 Mots-clés : autism spectrum disorders  communication and language  interventions-psychosocial/behavioral Index. décimale : PER Périodiques Résumé : To address the variability of naturalistic developmental behavioral intervention outcomes, the current study sought to isolate the effects of the instructional strategies of caregiver-mediated naturalistic developmental behavioral interventions. In this comparative efficacy trial, mothers of 111 autistic children (18-48?months) were randomized to learn one of two sets of naturalistic developmental behavioral intervention language facilitation strategies (responsive or directive). We aimed to characterize the effect of strategy type on language outcomes and explore the extent to which joint engagement outcomes mediated language outcomes. Children in the directive condition had significantly greater scores across multiple language assessments. At follow-up, the effect of strategy type on the frequency of spontaneous directed communication acts was fully mediated by coordinated joint engagement (indirect effect = ?2.070, 95% CI = [?4.394, ?0.06], p <0.05). Thus, children may benefit from caregiver prompts to facilitate long-term language outcomes. The current study is an initial step in the identification of the mechanisms of caregiver-mediated NDBIs. Lay abstract Caregiver-mediated early interventions support caregivers' use of strategies to improve their young autistic child?s communication. In the current clinical trial, we sought to isolate the most effective strategies to improve short-term and long-term child communication outcomes. Results demonstrated how children may benefit from caregiver prompts to facilitate long-term language outcomes. In conclusion, the current study improves our understanding of how early intervention facilitates child communication outcomes. En ligne : https://dx.doi.org/10.1177/13623613231213283 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=532

Effectiveness of a universal preschool-based program for emotional education in 3- to 5-year-old children with autism spectrum conditions / Catrina CLOTAS ; Marina BOSQUE-PROUS ; Albert ESPELT in Autism, 28-7 (July 2024)  

Public ISBD [article]  inAutism > 28-7 (July 2024) . - p.1861-1865 Titre : Effectiveness of a universal preschool-based program for emotional education in 3- to 5-year-old children with autism spectrum conditions Type de document : Texte imprimé et/ou numérique Auteurs : Catrina CLOTAS, Auteur ; Marina BOSQUE-PROUS, Auteur ; Albert ESPELT, Auteur Article en page(s) : p.1861-1865 Langues : Anglais (eng) Mots-clés : autism spectrum disorders  cluster randomized trial  emotional competence  preschool children  universal intervention Index. décimale : PER Périodiques Résumé : The "1,2,3,emoció!" is a universal preschool program of emotional education for children aged 3-5?years that has positive effect on emotional competence. The objective of this study was to evaluate the effectiveness of this program specifically in 3- to 5-year-old children with autism spectrum conditions. The effectiveness was evaluated during the first year of implementation (school year 2018-2019) in Barcelona. We conducted a cluster randomized community trial, with schools as units of randomization. The children?s level of emotional competence was evaluated with the validated Emotional Competence Assessment Questionnaire (score range from 30 to 180). We designed a linear regression model for paired measures. The dependent variable was the final Emotional Competence Assessment Questionnaire score adjusted by the initial score, sex, and grade. The sample consisted of 49 children with autism spectrum conditions, of which 11 were girls. Children in the intervention group showed an increase from the initial score to the final score that was almost three times higher (16.1) than the increase observed in children in the comparison group (6.6). The difference between the two groups was statistically significant, with 8.9 points (95% confidence interval: 1.2-16.6) attributed to the intervention. We conclude that the "1,2,3,emoció!" universal program has the potential to be effective in children with autism spectrum conditions. Lay abstract There are numerous programs and interventions to improve social and emotional skills that expressly target children with autism spectrum conditions. However, there is less knowledge about the impact of universal (directed to all children) school programs of emotional education specifically on these children. In this context, the aim of our study was to evaluate the impact of the "1,2,3,emoció!" universal school program on them. The results show that children with autism spectrum conditions participating in the program improved their emotional competence more than the ones who did not participate. Therefore, we conclude that the "1,2,3,emoció!" universal program is effective in children with autism spectrum conditions. This promising outcome gives the opportunity to these children to benefit from group learning in an inclusive school setting, by complementing individual interventions with a universal program. En ligne : https://dx.doi.org/10.1177/13623613231217058 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=532 [article] Effectiveness of a universal preschool-based program for emotional education in 3- to 5-year-old children with autism spectrum conditions [Texte imprimé et/ou numérique] / Catrina CLOTAS, Auteur ; Marina BOSQUE-PROUS, Auteur ; Albert ESPELT, Auteur . - p.1861-1865. Langues : Anglais (eng) in Autism > 28-7 (July 2024) . - p.1861-1865 Mots-clés : autism spectrum disorders  cluster randomized trial  emotional competence  preschool children  universal intervention Index. décimale : PER Périodiques Résumé : The "1,2,3,emoció!" is a universal preschool program of emotional education for children aged 3-5?years that has positive effect on emotional competence. The objective of this study was to evaluate the effectiveness of this program specifically in 3- to 5-year-old children with autism spectrum conditions. The effectiveness was evaluated during the first year of implementation (school year 2018-2019) in Barcelona. We conducted a cluster randomized community trial, with schools as units of randomization. The children?s level of emotional competence was evaluated with the validated Emotional Competence Assessment Questionnaire (score range from 30 to 180). We designed a linear regression model for paired measures. The dependent variable was the final Emotional Competence Assessment Questionnaire score adjusted by the initial score, sex, and grade. The sample consisted of 49 children with autism spectrum conditions, of which 11 were girls. Children in the intervention group showed an increase from the initial score to the final score that was almost three times higher (16.1) than the increase observed in children in the comparison group (6.6). The difference between the two groups was statistically significant, with 8.9 points (95% confidence interval: 1.2-16.6) attributed to the intervention. We conclude that the "1,2,3,emoció!" universal program has the potential to be effective in children with autism spectrum conditions. Lay abstract There are numerous programs and interventions to improve social and emotional skills that expressly target children with autism spectrum conditions. However, there is less knowledge about the impact of universal (directed to all children) school programs of emotional education specifically on these children. In this context, the aim of our study was to evaluate the impact of the "1,2,3,emoció!" universal school program on them. The results show that children with autism spectrum conditions participating in the program improved their emotional competence more than the ones who did not participate. Therefore, we conclude that the "1,2,3,emoció!" universal program is effective in children with autism spectrum conditions. This promising outcome gives the opportunity to these children to benefit from group learning in an inclusive school setting, by complementing individual interventions with a universal program. En ligne : https://dx.doi.org/10.1177/13623613231217058 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=532